Friday, December 31, 2010
2010 Quick Updates
I am going to go back on "cancer vacation" again till my next scan which
is set for the beginning of February. Happy New Year! See ya in February!
Christmas Eve 2010
Again last night I had to take Advil to get to sleep because my legs
ached. Slept great though. Woke up pretty excited that it's Christmas-Eve-Day.
I have been having a blast with Patsy and Omer. I cannot believe it is
almost Christmas. Luckily, I am ready for it. Last night I had to take Advil to
get to sleep because my back and legs hurt.
Patsy and Omer arrive this afternoon for a week. We are going to have a
lot of fun. I have been getting stomach aches lately. Last time this happened,
Dr R suggested taking zantac every day and the stomach aches went away.
Samantha and I have been walking every morning this week, even though it
is really cold. We both think it is a good way to start the day.
Even though it is really cold this morning, my plan is to walk Sam before
I go to work.
Rainy day, perfect for hanging around the house in my pajamas. I logged on
and put in 7 hours at work, too. Plus I started wrapping presents. What a great
Got the Christmas tree 70% decorated last night.
(LATER) The news is good! One spot grew by 3mm, the rest stayed the same,
and no new spots appeared.
(EARLY) Ready to hear my results.
I went to bed pretty early last night. Scan Day is exhausting. But I slept
great and woke up happy. It is very cold here today, in the twenties right now.
Monday 12-6-20010 Scan Day today!
October 8, 2010
At lunchtime yesterday I got a migraine, and it started up again two hours
later. A double migraine. Bummer. But I am still doing the happy dance over my
good results, and I feel fine today.
October 7, 2010
Feeling good today, but decided to work from home because of the low white
blood cell count. Don't want to run the chance of someone coughing on me in the
October 6, 2010
Nothing cheers a person up like excellent scan results!
October 6, 2010
-- Scan Results Day -- Quick! Cross your fingers and toes, or say a quick
prayer, or send vibes out to the universe in my favor. Lou and I meet with the
doctor at 9:00AM at Duke. I slept amazingly well last night! No lying awake
October 5, 2010
My eyelashes are growing back! When we went to that wedding, there was
nothing on which to put mascara -- but this morning there is!
October 4, 2010
Had a great weekend. Awesome massage on Saturday! Got a new ironing board
cover in a cheery autumn pattern and then ironed for hours while Lou watched
October 1, 2010
Goodbye September, hello October!
September 30, 2010
I coughed a lot last night, which was strange. But I feel very good this
September 29, 2010
Every day, I feel better. I have a bounce in my step again. My plan was to
go for a walk this morning, but it is raining cats and dogs.
September 22, 2010
I woke up many times last night, which stinks. But I did wake up this
morning early enough to make breakfast for Lou. I have not made him breakfast in
like 2 weeks!
September 21, 2010
Woke up a million times last last, but slept till 8:00AM which was nice.
Feeling okay. Not shaky.
September 19, 2010
My cold and cough are almost gone! That is great news.
September 18, 2010
Woke up at 5:15AM. Thank God today is my last dose of Decadron; tomorrow I
will be able to sleep late!
September 17, 2010
Coughed a lot last night. I was wide awake from 3:30AM to 5:15AM, but then
I went back to sleep for a couple more hours. I spent those wee hours looking at
fascinating pictures in a coffee table book on ancient Egypt that Robert lent
us. So now I feel sort of generally lousy. No serious complaints though.
September 16, 2010
Lou slept upstairs in the guest room so that my coughing wouldn't keep
hiom awake all night again. I did cough a lot last night, so it was a good
decision. I am feeling okay this morning. I have taken lots of anti-nausea
drugs. No nausea yet.
September 15, 2010
Last dose of Doxorubicin today!
September 14, 2010
I coughed all night long. Yikes.
September 13, 2010
Yikes, I woke up feeling really bad.
September 12, 2010
Woke up feeling really bad.
September 8, 2010
I slept great! I woke up with a sore throat and slight headache, but the
cough is gone.
September 7, 2010
Patsy just reminded me that I have a low white blood cell count, so it is
really good that I am staying home nursing my cold. I am suposed to watch for a
September 3, 2010
I have been power walking every morning this week, so I decided to take
this morning off.
September 1, 2010
I slept really well last night (instead of waking up over and over) and so
today I am feeling more energetic.
August 31, 2010
Got up early and jumped in the hot tub with Lou. A long column of
thousands of small black birds flew over the house toward the northwest. It was
wild, went on for minutes.
August 29, 2010
Bummer of a migraine today. I have been exhausted all weekend but not
nauseated, so that is a good thing.
August 28, 2010
Chemo insomnia got me up at 3:30AM, but I am happy to report that I am NOT
feeling nauseated or exhausted. I bet later today I will feel exhausted from
lack of sleep, but that is OK with me!
August 27, 2010
Well, I am exhausted and nauseated. And my iron died! So I cannot even
amuse myself by ironing.
August 26, 2010
Woke up just after five o'clock this morning. Must drink decaf for the
next couple of days because the Decadron makes me hyper. Feeling okay.
August 24, 2010
Sorry for not checking in here sooner! I got up really early so I could go
for a walk, but it is just dumping rain out there.
August 20, 2010
Jeepers, I woke up this morning from a dream where I was trying to get my
dead body buried. Yuck! I think maybe I'm watching too much TV on Egypt and
August 19, 2010
Went for the longer walk this morning, 2.2 miles. Feeling good!
August 18, 2010
No hip or back pain this morning! Yahoo!
August 17, 2010
I woke up with my left hip and lower back on fire. Now that I am up and
moving around, it is just sore.
August 16, 2010
I feel really good this morning
Yikes! It's Friday the Thirteenth! The good news is, my hip did not hurt at all
when I woke up this morning.
August 12, 2010
Woke up with some hip pain. Went for a long walk early this morning with
my neighbor, Sue. Got a big project to accomplish today at work!
August 11, 2010
Last night was one of those nights where I dreamt all night long that I
was awake. Amazingly, I woke up refreshed anyway. This morning I went for a
walk. I did not go to the gate -- I am getting bored with walking to the gate.
My hip does not hurt today!
August 10, 2010
I was exhausted yesterday, but I went to work anyway. I put in a full day
and got a lot done. Funny thing is, I "woke up" around 6PM and got all energetic
for an hour or so! I slept really well and feel good this morning. I do not feel
August 7, 2010
Wide awake at 3:30AM, so now I am ironing. Yesterday I had a tiny bit of
nausea, and took Zofran and Compazine to keep it from growing. Right now, no
nausea at all. Feeling good. Watching a No. 1 Ladies' Detective Agency DVD while
I iron. Got the volume down low so I don't wake up Lou.
August 6, 2010
I am feeling okay but plan to work from home again in case nausea hits.
After tomorrow, the threat of nausea is gone. So far, so good.
August 5, 2010
My back is bothering me a little right now, so I think that I won't be
able to sit at this desk much longer. Good thing I have my awesome pink laptop
and a LazyBoy... my plan is to log in to work for a half day.
August 4, 2010
No time to update the blog this morning! Woke up at 7:15AM and was out the
door at 8:00AM, headed to Duke.
July 29, 2010
Got up early and walked to the pool, which is a 2-mile loop.
July 28, 2010
Feeling good today.
July 27, 2010
I stayed up late again, reading, and woke up later than usual this
morning. Went for the 2 mile walk in the cool, fresh summer morning air.
July 26, 2010
I slept great last night and feel pretty good today. Just finished some
July 25, 2010
Today I am feeling mighty fine. I helped bring groceries into the house,
even bounced back down the stairs to bring up a second load of stuff.
July 22, 2010
Finally got in the hot tub this morning, and it helped my achy bones.
July 21, 2010
Woke up in minor pain this morning. My shoulders ached, my lower back
ached... it feels like the Neulasta shot getting my bone marrow all cranky
July 20, 2010
Today is supposed to be the start of a heat wave in NC. Yikes! So Lou,
Sam, and I went for our early morning walk while it was still cool.
July 19, 2010
Wide Awake at 5:00AM! Feeling good today. Went for the 2-mile loop and
picked up three golf balls! Woo Hoo!
July 18, 2010
I am tired today. The good news is that the nausea seems to be gone.
July 17, 2010
They say insomnia never killed anyone... but it definitely leads to too
much online shopping.
July 16, 2010
I woke up just after 4:00AM ready to start my day. Grrr Decadron! No
caffeine for me.
July 14, 2010
I am feeling good. Tomorrow I get to kill some cancer cells!
July 13, 2010
Did not set my alarm this morning, hoping that I could catch up on my
sleep from yesterday. I think it worked. I feel great.
July 9, 2010
July 8, 2010
My left hip bothered me all night. It was not painful enough to warrant
taking some Tylenol, however.
July 7, 2010
My eyesight has been a little blurry for the last couple of weeks. I think
that it might be dry eye caused by the chemo, so I have been using eye drops.
Did not sleep well, but woke up early and went for a walk with Lou and Sam
before it got too hot.
July 6, 2010
I must be out of the woods regarding migraines! 9 days since last migraine
July 2, 2010
Headed out now for the two-mile walk with Lou before work. It is abou 60
degrees, nice. Feeling pretty good this morning. 5 days since last migraine
July 1, 2010
Went for a walk this morning with Lou and Sam. 4 days since last migraine
June 30, 2010
I enjoyed nine fabulous hours of sleep last night! It can't be helped that
I was unable to take the antibiotic within a six hour window. 3 days since last
June 29, 2010
Oooh not such a good day today! 2 days since last migraine
June 28, 2010
Breakfast was so quiet this morning without Patsy and Omer! I'll call them
on my way into the office, to hear how the trip home is going. 1 day since last
June 27, 2010
Update Another fricking migraine! Thank God for Maxalt. 0 days since last
June 27, 2010
Woke up early to see Patsy and Omer off. They have been away from home for
over a month, which I totally appreciate, because they made everything so much
easier to deal with. 6 days since last migraine
June 25, 2010
Slept okay, but woke up at 5:00AM. 4 days since last migraine
June 24, 2010
Slept great last night, feel good this morning. 3 days since last migraine
June 22, 2010
Went with Lou and Sam for their morning walk around the block. What a
beautiful day! Patsy and Omer arrive some time today. Chemo tomorrow. 2 days
since last migraine
June 20, 2010
Feeling very good these days, but chemo again on Wednesday. 1 day since
June 19, 2010
Slept really well again. 0 days since last migraine
June 18, 2010
Slept really well last night. 1 day since last migraine
June 17, 2010
Feeling pretty good this morning. Got a long day ahead of me. 0 Days Since
June 15, 2010
I cannot believe that it is mid-June already. My back is stiff; I have to
make an effort to stand up straight. No pain though. Just stiffness.
June 14, 2010
Slept "late" -- till 6:56AM! I woke up four minutes before my alarm went
off. Feeling very good today.
June 12, 2010
Painful patches on my scalp lead me to believe that I will indeed be
losing my hair as predicted. Darn darn darn. And drat.
June 11, 2010
I miss being able to sleep late. Got up at 6:ooAM and logged on to work
for an hour to get something urgent taken care of.
June 10, 2010
Woke up every 2 hours last night! But feel good this morning.
June 9, 2010
My checkup went really well. My labs look good. I got an antibiotic for my
uinpleasant side effect. I also got the prescription for the Decadron for the
next dose of chemo, which happily won't be till June 23. I am in my office! I
better get to work!
June 8, 2010
Went for two short walks yesterday, once after lunch and once after
dinner. That is the best proof of all that I am feeling better.
June 7, 2010
Feel almost normal this morning! Looking at a lovely vase of flowers from
Lou's coworkers at Endicia, really pretty, with pink roses and big dramatic
June 6, 2010
Feeling much better!
June 4, 2010
I am not well. I am in bed. No barfing yet, just intense nausea.
June 2, 2010
A cup of tea was required to wake me up, but once I got going, I felt
Memorial Day 2010
I love a long weekend!
Saturday, May 29, 2010
Slept great, despite the storms. Woke up this morning at 5:30AM and worked
for a couple of hours. Now we are all going for a 2-mile walk.
Friday, May 28, 2010
Woke up at 6:40AM after a great night's sleep. Feeling great.
Thursday, May 27, 2010
Jet lag is wearing off. I was awake at 9:00PM last night, and asleep at
6:00AM this morning
Wednesday, May 26, 2010
Feeling good. Wondering if I should still be taking the 1/2 Glyburide
pill. I think I will track my numbers a couple of days and report to my primary
Tuesday, May 25, 2010
Woke up in my own bed at 2:00AM, realized my body thought it was 9:00AM,
but I managed to talk my body into going back to sleep till 5:30AM
Friday, May 21, 2010
I probably have not mentioned my blood sugar lately. My numbers are good
(95 to 140) and I am taking 1/2 pill of Glyburide every morning. It is not easy
to cut the pill with my butter knife... I end up with one neat half pill and a
pile of powder and rubble.
Slept great and woke up with skinny ankles. I have been taking the
diuretic in the late afternoon, and so for a short time in the morning my ankles
look and feel great
Yesterday I did not take the diuretic because we were on a tour with
limited access to bathrooms ;^) My ankles did not swell much
There is just too much going on to find time to make a real post. But
today we are at sea and I will make the effort. I want to post some pictures. I
feel good, maybe I do not have the stamina I once had, but no one does, right?
We are on the Celebrity Equinox! The cabin is fantastic, the ship is
awe-inspiring. But I am zonked from the long travel day. We need to stay awake
and get through the lifeboat drill. We are still waiting for our luggage, whcih
is why I have no pictures to post yet.
Too excited to sleep! I had to get up at 5:00AM because I was just too
excited about the trip. Lou and I ran out to get bagels, then I logged on to
work for a little while
My blood sugar numbers have been getting lower and lower. I am down to 1/2
tablet of Glyburide in the morning, and hope to be off that medication soon.
Heart stress test this morning! Doxorubicin is hard on your heart, so your
heart has to be okay before you start. This test is to make sure my heart is
I wiggled into the new compression stockings today and am looking forward
to only moderate swelling. (Last night the swelling was horrendous, but I wore
no stiockings and stood up ironing for hours and hours
Woke up itchy a lot last night. Sat in the sun room, applying ice to my
legs, and watching water fowl floating on the little pond out there.
UPDATE Patsy and Omer are driving out from Arizona to be here for the
first chemo treatment! Yahoo! It will probably take them 4 days to make the trip
in their lovely new Honda Accord. And they are bringing me the good ironing
board. Life is good.
My left leg and feet are very numb. Otherwise I am feeling good.
I slept through the night! Didn't wake up even once. What a miracle
My sore throat is a lot better, and I think that I feel better in general.
At one point yesterday I was striding down the hall at work feeling wonderful
My throat hurts when I swallow, like my glands are swollen on the right
side only. And I am exhausted! But today is Scan Day, and I am not miserabkle
enough to skip it.
Slept until 8:40AM this morning, what a treat. It is great to be home. Lou
is out right now walking Samantha, and I am supposed to be surfing the web for a
way to keep the barn swallows from making their muddy nest on our front porch
again this year...
Woke up at 4:08AM with a tummy ache, but felt fine when Lou woke me up at
8:00AM with a cup of coffee
We walked for hours yesterday through the Biltmore house. It was awesome.
I'm having a great time, and I feel great. There is no fridge in our hotel room,
so the clinical trial drugs are in the cooler. Need to get more ice before we
take off for the day
Oh boy, we both slept great last night. This mattress is so comfortable. I
wonder if they sell them in the gift shop
I am on vacation! In 52 minutes we leave for Asheville. No time to chat.
Feeling very good. I stopped doing the PT exercises, and the pain went away. I
must have been doing something wrong.
On Saturday, we see "Wicked" at the fabulous DPAC in Durham, NC. John and
Pat are coming too, so I know we'll have a great time
I have slept great three nights in a row! But this morning I woke up itchy
I slept great AGAIN last night. But I just realized that I have a bunch of
PT exercises to do before I leave for work...
I slept great last night. I took some Advil before going to bed because my
back was bothering me. Late this morning I have a PT appointment
My back is bothering me, but I plan to arrange a physical therapy
appointment today. Slept well last night although my alarm at 7:00AM came as
quite a shock.
I'm itchy again. I'm grateful that I got a week's vacation from the
itchiness. Tonight we go to dinner with Chaz and Darleen. Looking forward to a
lot of laughs
TAX DAY 2010
We sent our taxes in weeks ago, so today is not particularly painful.
Plus, I slept great last night. I'm a little itchy this morning, but I know I
can use an ice cube if I need to.
I didn't sleep well at all. Got a big day today. Wish me luck
Another great night's sleep! This morning I briefly saw my ankle bones,
but swelling has commenced
What a great weekend! Knock on wood, the itchiness has abated. I feel very
good this morning, did not wake up once last night.
At 5:00AM I came out to the sitting room and rubbed ice on my itchy legs.
It worked really well, except I lost one ice cube somewhere in the dark
: Again, I woke up only twice last night! My itchy legs woke me up, but I was
too sleepy to get an ice cube to make the itchiness stop. This morning, I am
sneezy and my ankles are already swollen, but other than that I feel good.
: Only woke up twice last night. That's an improvement
: My left leg is still numb right above my knee, and starting yesterday it is
also tight and sore. I think that my message to Dr Morris must have gotten lost
because they have not called me back yet. I am not sure if I should call UNC
again or just talk to Dr Riedel at Duke.
Happy Easter 2010
: Still not sleeping well, awoke with leg cramps and limped into the bathroom to
stand on the cold tile, which works miracles. Having a lovely day with Lou.
Watched a movie and went for a late lunch to 35 Chinese Restaurant in Cary where
we ate lamb.
: Got up around 6:30AM after another restless night. I foresee a nap in my
: Got up around 6:30AM after another restless night. I foresee a nap in my
April Fool's Day 2010
: I haven't been sleeping well; I wake up a few times every night. This morning
I was tired and grumpy and everything ached. So Lou and I jumped into the hot
tub. After that, I felt pretty good.
Wednesday 3-31-10: Got up early this morning so we could watch last night's
episode of LOST. Last night I dreampt that I was at my hairdresser's trying to
get an appointment for a haircut. (I think it is too soon for that.)
Tuesday 3-30-10: I was so completely exhausted yesterday evening! But I feel
great right now.
Monday 3-29-10: Slept until almost 8:00AM! That's a good thing, because today
will be a long day. My ankles are swelling already, so I guess I'll have to wear
compression stockings today.
Friday 3-26-10: Woke up completely stuffed up! And dry. I drank a big glas of
water and came back to life. Today my team at work is going out to lunch to
celebrate all the birthdays and milestones we missed in the last 6 months
because we were so slammed with work.
Thursday 3-25-10: Woke up early today to drive Lou to an appnt before work. My
blood sugar was 146 this morning -- the numbers are finally improving
Wednesday 3-24-10: I feel good today. Lou and I went to diabetes class all day
yesterday. It was very educational and
Monday 3-22-10: Wow, I have not posted since Thursday! I didn't think I had that
much fun this weekend. No more nausea! But my ankles are swollen, my face and
scalp are broken out, my left leg is still bothering me, and I am all stuffed
up. Slept for nine hours last night.
Thursday 3-18-10: I was exhausted this morning when my alarm went off at 7:00AM
because even though I went to bed early, I was awake for what seemed like a
Wednesday 3-17-10: Yesterday I forgot to take the Metformin with dinner.Didn't
remember till I was in bed. Checked my blood sugar (200) and then took the pill.
Was a little nervous to take the pill on an empty stomach but it was fine
Tuesday 3-16-10: Yesterday I was only a little nauseated! But I was completely
exhausted. Today I feel pretty good -- hope it stays that way. Blood sugar was
151 when I woke up this morning
Sunday 3-14-10: I spent most of the day waiting to throw up. Ugh, Metformin does
not agree with me
Saturday 3-13-10: Had to take a nap this afternoon. I think that this
uncontrolled blood sugar is kicking my butt.
Friday 3-12-10: Slept great, did not wake up once in the night. Probably from
relief at the good news yesterday.
Thursday 3-11-10: Slept great! Going to do my PT exercises now and leave soon
for the day at Duke...
Wednesday 3-10-10: Dreamt about spiders last night, but woke up feeling pretty
Tuesday 3-9-10: Itchy, Stuffy, and Numb! Three new dwarves for Snow White to
cook for? Nope, just how I feel today
Monday 3-8-10: So far, feeling pretty good today. My left leg seems more numb
than last week, but the pain is gone. I guess that means physical therapy is
Saturday 3-6-10: Today we see Spring Awakening at the DPAC and then go to a
steakhouse with a bunch of neighbors.
Friday 3-5-10: Last night I was nauseated. But today I woke up feeling pretty
: Last night I slept pretty good, and this morning I feel pretty good.
Sunday Night 2-28-2010
: Today I have not felt that great. I have had a headache and just haven't felt
: Thank God It's Friday!
: I was exhausted last night! But I slept good and woke up feeling refreshed.
Work is a little crazy right now because deadlines are looming. That RUSH RUSH
RUSH mode can be really fun (for a short time). Right now, it is snowing so
prettily, but it is not sticking to the roads.
: I was exhausted yesterday. Maybe starting to take Metformin to lower my blood
sugar is wiping me out, I don't know. This morning I woke up just before 7:00AM
but was so tired still I crawled back into bed for another hour and a quarter.
Feel pretty good right now, ready to face the day.
: Hmmm, blood sugar was 196 this morning. My goal is 80 to 120. I slept eight
hours, but I am still tired. Otherwise I am feeling pretty good.
: Slept more than 9 hours last night! Ahhh, that is wonderful. Right now I have
that headache again, but I hope it will go away soon because at lunch today I
started taking a prescription to help control my blood sugar levels.
: Last night my blood sugar was a whopping 345, so at 11:30PM I hopped on the
exercise bike and did 5 miles in 40 minutes. When I retested, I was down to 218.
Tomorrow morning I see my primary care physician and hopefully start getting
this mess under control.
: This morning I rinsed my sinuses and feel much better.
: My platelets are low, so my nose is full of blood, which does not smell great.
: Woke up with a headache. Blood sugar 176. Finally get to send it my results to
the nurse today.
: Girl Scout Cookies have arrived! And me with high blood sugar. Boo hoo! This
morning Lou said that high blood sugar might be the best thing that ever
happened to me (to help in my never ending weight struggle). So I joked, "You're
saying it's a gift from God?" because I heard that from a lady once about the
cancer. (I wanted to spit on her.)
: I am obsessed about checking my blood sugar level. If it didn't hurt to jab my
finger, I'd be doing it more than three times per day. This morning it was 182
: Happy Valentine's Day! Lou is making breakfast right now, grits and eggs.
: I woke up to lovely snow blanketing the neighborhood. I am not exhausted any
more. My energy level is back where it ought to be. I guess I caught up on my
: I am still dragging! Headache, congestion, exhaustion... I give up, I am going
back to bed. This afternoon, I go to Duke for routine labwork
: I am dragging! I feel as though I have a cold. When I blow my nose, there is a
creepy amount of blood in the tissue (which is a known side effect of the
clinical trial drug and probably too gross for me to mention here, sorry).
: Lou woke me up at 7:00AM. I was dreaming that my old oncologist was there
giving me an exam, very weird. My cough might be back. My ankles are looking
mighty fine though. I have an appointment this Thursday to see my oncologist.
: Nineteen years ago today, I went on a blind date with this guy named Lou, and
it was the best decision I ever made. At some point, I'll have to tell you the
story of how he threw away my phone number after that first date...
Monday 02-01-10: Going to be a tough day today.
Sunday 01-31-10: Lovely snow day yesterday, trapped in the house, in my PJs,
watching movies, doing laundry... and knowing the whole time that four inches of
snow in Massachusetts wouldn't trap you in your house but it is lovely that here
in North Carolina it does
Saturday 01-30-10: SNOW! It's lovely. I was WIDE AWAKE last night and logged on
to work till about 2:30AM. There is nothing I like better than sending out email
in the middle of the night.
Friday 01-29-10: I slept great (with the help of an Ambien pill) and woke up
raring to go. I heard a lot of great stuff yesterday in the training and having
some work to do
Thursday 1:30AM 01-28-10: I AM SO WIDE AWAKE. It must be the prednisone. I need
to be alert at work tomorrow -- no TODAY. I am supposed to listen to an
important training session. Oh but my cough is better!
Tuesday 1-26-10 evening update: Cough, cough cough cough!
Tuesday 01-26-10: We got up early this morning to watch 24. I slept well, my
ankles look good, but the port is still tender.
Monday 01-25-10: I woke up in the middle of the night convinced that some
mechanism attached to my arm had fallen over on top of Lou. He didn't appreciate
being woken up to see if he was okay ;^)
Sunday 01-24-10: I am sitting in my LazyBoy with my feet elevated and my laptop
in my lap. Heaven! Lou is upstairs working. I am going to the grocery store, and
then a friend is coming over to sew something and work on her resume. I can't
get to the Y today, but I will go for a walk.
Saturday 01-23-10: Lou is upstairs working, and I am sitting here thinking up
something to blog about. We had a great day. I took all the Christmas
decorations off the Christmas tree and boxed them up nicely
Friday 1-22-10: I just took my last antibiotic. I hope my cough goes away soon.
I slept great last night!
Thursday 01-21-10: My alarm went off at 5:30AM so I can get to the vanpool, so I
am dragging. But I feel pretty good. Right now, my ankles look great: no
swelling at all.
Wednesday 01-20-10: I slept great last night and feel pretty good this morning.
It is supposed to be 63 degrees today, but tomorrow it will drop to 44. It is so
much more convenient to take my clinical trial pills at night! Plus, it means no
snacking is possible after dinner
Tuesday 01-19-10: Yesterday I wore very cute shoes, but they allowed my feet to
swell. Today I'll wear my sneakers instead.
Monday 01-18-10: Lou and I got up at 6:00AM so we could watch the two hour
premiere of "24" this morning :^) so I cannot complain that I did not get enough
sleep last night.
Sunday 01-17-10: I am dragging today! This cold and asthma is wearing me out. I
am going grocery shopping and then I am going to get back into my PJs and just
do nothing today.
Saturday 01-16-10: I am feeling better, still coughing and congested but a bit
Friday 01-15-10: I got up at 5:30AM and rode in the vanpool to work. My legs are
aching today. The doctor told me yesterday that all this swelling is caused by
the Tax chemo, which I stopped taking in October, and that this side effect
might last as long as a year after you stop taking the chemo! Yikes.
Wednesday 01-13-10: Yesterday got antibiotics and asthma medicine. Actually got
an albuterol treatment before I left the doctor's office and felt much better.
Tomorrow is my scan!
Tuesday 01-12-10: Slept better last night. Today I feel as though I am fighting
a cold. Stuffy head, cough, tiredness. I have been coughing for more than 3
weeks. I see my primary care physician this afternoon; maybe he can help
Monday 01-11-10: Didn't sleep at all last night! Maybe because I drank tea after
4:00PM yesterday. Turned off my alarm clock because I knew I could not get up at
5:30AM. When I finally got up at 7:00AM, I felt pretty good. Really looking
forward to getting back to work. I still have a cough and swollen feet, but
these are minor problems
Sunday 01-10-10: Today I walked Sam around the block, did laundry, and read.
Quiet and restful. I am still coughing and plan to call my primary care
Saturday 01-09-10: We are home safe and sound! I am tired. Traveling is
exhausting, even when it is pretty easy like today.
Friday 01-08-10 EVENING UPDATE We are all packed, suitcases are in the hallway,
and ready to go home. I am about to pack away my laptop. We're having a later
dinner at 9:00PM. I feel great.
Friday 01-08-10: YIKES! Both feet are so swollen this morning I cannot put my
pink flip flops on. I am going to elevate my legs all day long. Otherwise, I
feel good and am looking forward to going home.
Thursday 01-07-10: Got a pot of coffee delivered to our cabin this morning; what
a great way to wake up! Feeling pretty good. The white painful spot on my gums
seems smaller and less painful
Wednesday 01-06-10: Lou let me sleep till 8:30! We stayed up late last night
watching a movie under the stars on a huge screen near one fo the pools. State
of Play, with Russell Crowe. My ankles are still problematic, but I feel pretty
Tuesday 01-05-10: I ran down to the coffee bar this morning to get croissants
and lattes -- and brought them back to the cabin for us to enjoy in bed. (I
never can deliver Lou coffee in bed at home because he is always up before me.)
I have a small sore in my mouth; I think that it might be from the clinical
trial drug. I am visualizing red and white blood cells ruching over to make it
Monday 01-04-10: Coffee delivery at 7:00AM woke me up. We sat on the balcony and
drank a pot of coffee before breakfast. What a great way to wake up! I am
visualizing my hair growing... but I am not seeing much results ;^)
Sunday 01-03-10: Gosh I sleep great on a cruise ship! I still have a little
cough and my ankles are still troublesome. Today we go to a volcanic black sand
beach! I am so excited.
Friday 01-01-10: My cough is almost gone, but my ankles are really swollen. Hey,
my peach fuzz and eyebrows are really coming in good!
Posted by Karen at 11:02 AM
Wednesday, December 15, 2010
Janitorial Help Wanted
My bottle of AHCC arrived in the mail yesterday. That's the mushroom extract
stuff that is supposed to increase natural killer cells activity and therefore
boost your immune system. I am hoping to get more natural killer cells roaming
around inside me, looking for cancer cells to beat up.
I felt sort of led to AHCC.
I first heard about natural killer cells a long time agao, and I remember
thinking that they were really cool, like violent janitors working inside my
body. I spent a bunch of time visualizing them zooming around inside me, taking
care of business, whacking cancer cells with their brooms. I especially
visualized this every time I saw a scan and had a good idea where various tumors
A few weeks ago, I started thinking about natural killer cells again, out of the
Then I was in a waiting room and decided to borrow a magazine (okay, I stole a
magazine) because it contained an article about meditation that I thought was
really practical. Flipping through the magazine later, I noticed another article
on fighting allergy symptoms by taking something called AHCC to increase the
number of natural killer cells working for you.
Wow, I thought, you can increase the number of natural killer cells working for
you? That would be excellent.
So I surfed the web a little. I saw some interesting claims but little proof. I
also figured out where to buy the stuff. But I decided that I would have to
check with Dr R before I started taking a new supplement, especially since the
web warned that it decreases the effectiveness of Doxorubicin. I am totally all
done taking Doxorubicin, but I figured I ought to check anyway.
Dr R said that there was no proof that it would work, but that if I wanted to
try it, then I should. He actually suggested that I run my own informal clinical
trial, which I thought was a cool idea.
So, I started taking the AHCC this morning. Let's say I have put an ad in the
paper, looking to hire on a big crew of violent janitors for a special cleanup
project. No experience necessary. Cool uniforms and big heavy brooms will be
issued to all new hires.
Posted by Karen at 9:43 AM 6 comments:
Sunday, December 12, 2010
Meltdown Last Thursday
On Thursday night, I had a meltdown.
You can imagine what I was feeling. I am human, after all.
I really do not want to have cancer, especially such a nasty kind. I'm bummed
that we have not been able to get rid of it, despite all the chemo I've had.
It bothers me that I would hardly even know I have cancer except for all the
trouble that the chemo and radiation have caused, like part of my left leg is
numb, I don't know that I have to pee till I really really have to pee right
now, both feet are sort of numb, my toenails are freaky looking, I am still
close to bald, and so on.
Every time I feel an ache or a twinge, my first thought is that it is the
cancer. Every time we plan a vacation, I wonder if I'll be able to go. Every
time I hear someone say that God does not give you more than you can handle, I
get ticked off.
And my "good news" from last week -- that only one tumor grew -- didn't seem all
that good on Thursday night. Who cares if only one tumor grew? None of them
shrank. None of them disappeared forever.
So on Thursday night, I sat on the couch with Lou and cried all over him. (He
really is the best husband in the world.)
Afterward I felt a lot better.
Acceptance is the answer to all my problems today. Accepting that I have cancer
doesn't mean that I like it. It just means that I realize how fruitless and
unpleasant my life would be if I spent all my time railing against this fact of
my life. So, except for the occasional meltdown, I maintain a pretty good
attitude. I focus on the positive, and try to have a good time.
This whole weekend, I have been feeling great. My good news from last week is
good news again. I'm looking forward to another awesome two months without
chemo. I'm reading When God Doesn't Make Sense by Dr. James Dobson, and I just
finished re-reading The Problem of Pain by C. S. Lewis.
Ooooh, and I am looking forward to talking AHCC and revving up my natural killer
Posted by Karen at 6:42 PM 1 comment:
Thursday, December 9, 2010
Natural Killer Cells
I was reading an article about meditation in Natural Health magazine, and I saw
another article about fighting allergies with natural killer cells. Those are
the cells that roam around your body looking for intruders -- and killing them.
I've heard of natural killer cells and I used to visualize them attacking my
Anyway, this article mentioned a supplement that can increase the number of
natural killer cells you have in your body. It's called AHCC (Active Hexose
Correlated Compound). It is an extract from mushrooms. It is supposed to be good
for your immune system in general. I also found some info on the web about the
idea that you might be able to use AHCC to fight cancer cells.
So, on Wednesday, I asked Dr R if it would be okay for me to try taking AHCC. I
felt a little silly, like I was asking if I should take shark cartilege or make
chicken sacrifices. But he was supportive, as always. He said that there was no
definitive evidence either way regarding whether it would be effective in the
fight against the sarcoma -- but that if I wanted to try it, it would be a
perfectly good idea to do so, especially since I am not getting any chemo for at
least the next two months. He suggested that I run my own informal clinical
I could NOT have taken it this summer, because AHCC reduces the effectiveness of
So I ordered a bottle. Now I am waiting for it to come in.
Posted by Karen at 8:35 AM 2 comments:
Wednesday, December 8, 2010
Like Waiting for Santa
Waiting for the doctor to come in and give me my results is like waiting for
Santa. Will this be something I want, like a shiny new pen with my name on it?
Or will it be something I don't want, like a lump of coal?
This morning, I woke up at 6:00AM, immediately wide awake and thinking about how
I would be getting my results soon. I wasn't scared or nervous. I was just
looking forward to knowing.
Our plan this morning is to get coffee at Electric Beanz. (Mine is an
extravagant half eggnog latte, and Lou's is an Italian roast drip.) Then we eat
bagels for breakfast at Breugger's. After that, we zoom up to Duke to see what
Santa left in my stocking.
I MUST HAVE BEEN A VERY GOOD GIRL
NO COAL IN MY STOCKING
The news is good. One spot grew (by 3 mm) and the rest basically stayed the
same. And there were no new spots! That is the best part.
So, we are going to continue leaving me alone. No more chemo for another two
months. Ooooh, I get to keep feeling good. Happy dance! Going to have a Merry
Christmas for sure.
My next scan will be on February 7.
Posted by Karen at 6:44 AM 7 comments:
Tuesday, December 7, 2010
Happy Birthday, Dad
Today is my Dad's birthday. He's a wonderful father, the best ever. I took this
picture with my cell phone when we were out there visiting my parents last
month, and now when I get a call from my Dad's cell phone, this picture pops up.
Scan Day yesterday went well.
I had a hard candy in my mouth when the nurse accessed my port, because I got
nauseated the last few times from the smell and taste of the saline flush. But I
didn't plan well and had no candy for when they de-accessed my port. I was
flooded with the smell and taste, and although it was unpleasant, I did not
become nauseated. That is awesome. I guess I was just easily nauseated during
The clinic was backed up, and so I spent most of the afternoon waiting around to
be called. But I had a book to read, so I was happy. It was a medical thriller,
an old one called Miracle Cure by Michael Palmer.
I also met a nice lady who was hanging out in the CT Scan waiting room. She was
waiting to be admitted to the hospital. She hadn't expected to be admitted; she
had her first appointment with a new doctor for breathlessness, and the doctor
said that she could not go home in that condition. We talked about how stressful
it is while they are trying to figure out what is wrong with you. I did not
mention to her that a lot of characters in Miracle Cure had breathlessness and
ended up dead because they were in a clinical trial run by an evil
pharmaceutical company and greedy doctors...
I get my results tomorrow, and I will post them as soon as I can.
Posted by Karen at 8:47 AM 1 comment:
Monday, December 6, 2010
I'm back! Vacation is over.
This was an excellent idea. And it worked. For the most part, I did not talk
about or think about cancer. There were people who don't read the blog and who
asked me how I was doing. I would say I was really good and try to avoid going
Of course, I couldn't completely forget about cancer. My denial just is not that
strong. For one thing, my lack of hair was a constant reminder. I was still
wearing a hat to work until about a week ago. Once I got complete coverage (no
shiny bald patches) I gave up the hats.
I will admit that I have found myself worrying about this scan as the date
approached. Last time around, I made myself consider the worst possibilities in
detail so I would be ready for bad news. I decided not to do that again, if I
could help it. Better to be surprised by bad news than to waste a week or two
miserably waiting for bad news that might not come.
The scan is this afternoon, and I get the results on Wednesday. Wish me luck.
Posted by Karen at 8:28 AM 5 comments:
Monday, October 11, 2010
Things are good! Chemo ended almost one month ago. I feel good. My hair is
starting to grow back. And most importantly, last week, I got good news from my
So I don't have to even think about cancer till my next scan, which will be on
December 6, 2010
Last week, when Dr R ran through all my options for the future, he said that my
treatment will probably continue to follow this pattern: the cancer will grow,
we'll use chemo to beat it back, and then we'll take some time off... but
eventually the cancer will grow again and the whole cycle will start over. At
least, that is the plan till someone comes up with a way to kill it forever.
So this weekend, I started thinking about how I could have years and years and
years of chemo & cancer ahead of me. I guess till now I have mainly thought
about TODAY and what's on the immediate horizon.
I realized that the idea of years and years and years of thinking about cancer
every day sounds completely awful to me. I decided that I want a break from
thinking about cancer. I want to go on a Cancer Vacation.
I am not talking about another cruise. I am talking about just living my regular
life, without thinking about and talking about and blogging about cancer.
Yeah, I said no blogging about cancer. You go on a cancer vacation, you do not
bring your cancer blog with you. You leave the cancer blog at home.
I know there are some of you who check in every day to see how I am doing, and I
love you for it. You have no idea how your support and friendship and love have
made everything so much easier to handle. I think this blog is one of the best
things I have ever done. But I need a break. Maybe you need a break, too.
So, this vacation starts right now. My bags are packed! I am logging off, and I
won't be back here till my vacation is over, which will probably be right before
my next scan.
Let's meet back here on December 5, okay?
Posted by Karen at 8:22 AM 10 comments:
Wednesday, October 6, 2010
Nothing Grew! Nothing New!
No new tumors appeared!
None of the existing tumors grew!
A few tumors shrank!
Here are some specifics. The tumor in the pancreas shrank. The tumor in the
psoas shrank. One of the tumors in the left lung shrank. The amount of shrinkage
was not huge, but any shrinkage is good shrinkage.
What a relief. I was braced for bad news, and we got excellent news instead.
Thanks to everybody who kept reminding me that miracles happen.
Now I get two months off, and I expect to feel better every day. I go back on
December 6 for my next CT Scan.
My white blood cell count (neutrafils) is very low, so if you see me, do not
sneeze on me. It will bounce back up pretty quickly now that chemo is over.
The other good thing that happened is that Dr R ran through some of my options
for the future. There are two more chemo drugs for sarcoma. More exciting is
some chemo drug for sarcoma that is in wide use in Europe and Asia (did not
catch the name) and that is now available in Charolotte, SC, as a clinical
trial. I would have to pay $250 per dose out of pocket. Plus I would have to
travel to Charlotte every three weeks. (Not exactly a hardship because Charlotte
is super nice.) I could stay on that drug for as long as it works. After that,
there is at least one other chemo drug not specifically approved for sarcoma but
currently being tried out on sarcoma. And then finally there are some clinical
So, lots of options for the future, but nothing needs to be done today.
Nothing needs to be done today! Yahoo!
Lou and I did the Happy Dance in the parking garage at Duke.
Posted by Karen at 11:37 AM 297 comments:
Tuesday, October 5, 2010
Discord in the Ross Household
Twice a year, there is discord in the Ross Household. Those are nights when the
New England Patriots play the Miami Dolphins.
Childhood sports team affiliations cannot be denied. I grew up in Massachusetts,
and Lou grew up in Miami. My high school band (I was a flag in the color guard)
once performed at halftime in Foxboro for the Pats.
Last night, the Patriots were in Miami. Here is an excerpt from the report filed
by Gus Morse online:
"What started out as a dominating first half from the Miami Dolphins’ defense
against the New England Patriots crumbled into a 41-14 Monday Night Football
loss, described as embarrassing by several Dolphins."
Arguing over the game has been a fun distraction from waiting for our
appointment with Dr R tomorrow to get the results of yesterday's CT scan. That
scan was as pleasant as can be, I am happy to report.
Posted by Karen at 7:49 AM No comments:
Monday, October 4, 2010
Scan Day Today
Magical medical technology! They can peer inside my body without surgery! This
afternoon I go to Duke for my scan, to see how the Doxorubicin worked.
I am reminded that not so long ago, doctors couldn't really tell what was
happening inside you unless they did surgery and took a peek. That was the case
in 1996 when Lou's Mom has cancer. They had no idea how bad it was till they did
So every time I get a scan, I am glad that they can scan me. I am hoping for
more Star Trek technology, like if they could just beam the tumors out of me.
Last night we watched the 60 Minutes story on Bill and Melinda Gates and their
efforts to fight AIDs, malaria, and mother/baby deaths. I got all choked up, and
then I realized it wasn't about their philanthropy at all. It was that I was
nervous about today. It was good to get it out of my system, and I felt better
I won't get the results till Wednesday morning.
Posted by Karen at 8:21 AM 2 comments:
Friday, October 1, 2010
Lee Child Insomnia
Lee Child's books are so gripping, page turning, and compelling, I cannot put
one down once I start reading! Last night I finished Bad Luck and Trouble. "You
do not mess with the special investigators." Excellent. Gosh, I am half hoping
he writes something with Neagley as his main character. I am bummed that there
are just two existing Jack Reacher novels to go.
Anyway, after I finished reading last night, I was all revved up and could not
go to sleep. I ended up logged on to work for two hours! Cleaned up a pile of
little issues that had been nagging at me. Nothing like the wee hours to help
So this morning, I am sort of dragging. Luckily, it is Friday... and tomorrow
morning I get a massage.
Posted by Karen at 8:46 AM 2 comments:
Thursday, September 30, 2010
Eighteen years ago, it rained at my wedding. People said that would bring us
good luck, and it did. We have had a wonderful marriage, and every day I am
reminded how lucky I am to have Lou.
This weekend, Lou and I went to the wedding of Amelia and Steve. (Amelia is my
friend from work, and the person who does the energy work, Healing Touch, which
has been helping me deal with my chemo side effects.)
This was an amazing wedding.
We were directed to park in a field. Then we climbed aboard a golf cart for a
fast, bumpy trip up the hill to Amelia's folks' place. We were hanging on for
dear life (we were on the back bench and could have been thrown right off by any
of the bumps), and Lou looked at me and said, "I am really glad we came to this
wedding!" It was better than any excursion we ever paid for on a cruise.
Anyway, we made it to the house alive and got pretty good seats on the upper
level of the flagstone patio. The view was gorgeous, of woods and a pond and a
meadow. (When the bride and groom joined the minister, we could see Amelia's
face, but not Steve's.)
It started to sprinkle rain drops on us, which we figured would bring Amelia and
Steve nothing but good luck. Another friend from work, Anya, quickly found an
umbrella for her daughter, Drake, and her cello. Drake's performance was so
Then the rain stopped, but it started up again later while some lady was reading
an Irish blessing and got to the part about God's blessings being like little
raindrops. A collective, awed "Oooo," swept through the assembled guests!
Then, while Steve was reciting his vows, the sun broke through the clouds and
shone down on them, like God was saying, "You are bathed in my light, and your
future together is very bright."
I got all choked up.
The reception was excellent, and dinner was excellent. We got to chat with the
minister and his wife Nancy, who informed us that the same minister married
Amelia's parents too.
But, by now I was completely exhausted and we had to slip away. We stayed
overnight in a hotel and then drove home really early to find poor old Samantha
sort of mad at us for leaving her. John next door had dropped by a couple of
times to check on her, but she was still annoyed with us, until we took her for
a walk and plied her with cookies and got back in her good graces.
Posted by Karen at 9:26 AM 1 comment:
Wednesday, September 29, 2010
Chemo is Over!
"Chemo has been over for awhile, Karen," you might be thinking. "Wasn't the last
chemo on September 15?"
You'd be right, if that was what you were thinking.
But somehow, until late last night, it hadn't really sunk in that chemo is over.
Late last night is when I realized that I can finally schedule another massage
appointment with Martha at Avante Physical Therapy in Cary, NC, because chemo is
over! (No massages allowed during chemo because of all the drugs swirling around
in your system.)
I have this knot on my left shoulder that is killing me... and I know Martha can
make it go away.
Posted by Karen at 8:30 AM 2 comments:
Monday, September 27, 2010
Personality NOT Linked to Cancer Risk or Prognosis
Here are a couple of quotes from a Reuters Health article that I found:
"People who are friendly and outgoing and those prone to be nervous and moody
have at least one thing in common: their personalities do not seem to be
connected to their risk of developing or dying from cancer, a new study finds."
"The findings, from two long-running studies of Finnish and Swedish twins, add
to evidence refuting the theory that there are certain cancer-prone
personalities, and that personality is an important factor in the odds of
"The notion that having a 'fighting spirit' will affect your cancer prognosis is
an appealing one, said Coyne, who directs the behavioral oncology program at the
University of Pennsylvania School of Medicine in Philadelphia."
For the full article, use this link:
Why did I like this article so much? Because when I hear someone telling me that
I am going to be fine because I am so cheerful, sometimes it strikes me the
wrong way. I "hear" that I had better stay cheerful, or else I won't be fine.
And I "hear" that if I end up not fine, it will be my fault because I was not
cheerful enough. Grrrrr. (I know that is not what the person is really saying.)
But I am very glad to be a cheerful person. It certainly helps make every day
more enjoyable. Maybe personality type is more of a quality of life issue.
What if some Grumpy Joe and I have the same tumors, get the same treatment, have
our tumors shrink (or not) at the same rate, and have the same number of days
left on the planet? Which one of us is having more fun? The moody one
complaining about everything, or the cheerful one focuing on the bright side and
planning crazy vacations?
The article says a cheerful personality won't buy me more days -- but I think it
buys me more fun every day.
Posted by Karen at 9:08 AM 6 comments:
Thursday, September 23, 2010
Time for Walkies
I haven't been sleeping well at all. It takes a long time to fall asleep, and
then I wake up many times in the night. I can blame Decadron for a few nights of
insomnia, but not for this. It has to be because I have not been walking at all.
I always sleep better when I am exercising.
I haven't felt like walking at all for like two weeks. I had that bad cold and
then the last dose of chemo... but now that's all over. I need to start walking
again, if only so I can get a good night's sleep.
It's already a little late this morning to go for a walk, and it will get up to
96 degrees this afternoon. Darn. Maybe I can do laps inside the air conditioned
building at lunchtime.
Posted by Karen at 8:49 AM 2 comments:
Wednesday, September 22, 2010
Last Day of Summer 2010
Yesterday was another shaky day, but I did not go down for a ridiculous nap.
That is progress. I feel as though I am emerging from the other side of chemo
I feel better this morning. Not shaky, and stronger. So, my plan is to actually
go in to the office.
Tonight, summer ends. I must admit that I am looking forward to cooler
temperatures and long-sleeved shirts. I'm so tired of all my summery clothes.
The funny thing is, tomorrow we are expecting 96 degree heat. Welcome, Autumn!
I find myself thinking about what it will be like when all my chemo options are
exhausted, and the cancer is growing. That will be a difficult time. I feel
really good about my choices, my oncologist, and the sarcoma specialty center at
Duke, so I assume that I won't be filled with regret. The only thing I could
have done differently was to fall for some of the crazy claims, like eating
pureed asparagus every day, or cottage cheese mixed with flax seed oil, or some
wacky supplement that someone was trying to sell me. Those crazy claims offend
me. What kind of loser do you have to be to take advantage of a panicking cancer
patient by selling them crap that won't work? I can only hope that there is a
special circle in hell for those people. (It's probably right next to the people
who steal from the elderly.)
Posted by Karen at 8:16 AM 1 comment:
Tuesday, September 21, 2010
I struggled with that shaky chemo feeling yesterday. Like, if I held out my
hands, they would shake. Plus, I was tired and sort of groggy.
I logged on remotely to work for the morning, but then I had to go to sleep
after lunch. This time, I slept for hours and hours. I was much better when I
finally woke up around 5:00PM. I actually worked till 9:30PM! Got a lot done,
too. That was nice.
Posted by Karen at 8:45 AM 1 comment:
Sunday, September 19, 2010
Maybe Tomorrow I'll Sleep Late
Jeepers, I was wide awake at 3:00AM today. I tried to fall back to sleep for a
half hour, but it was no good. So I got up and had a lovely small cup of my
regular tea, Tetley British Blend (round teabag). Yum. Usually I drink from a
huge mug with two teabags, but I figured I had better start small after not
having any caffeine for four days.
Maybe tomorrow I will be able to sleep late. Not the most fabulous plan for a
Monday morning, a working day, but it's what I've got. By tomorrow, the Decadron
will have worn off. The thing is, I didn't want to take any Ambien to sleep this
weekend. So I have been waking up early like this. Waking up early won't kill ya.
Waking up early, puttering around the kitchen, making little clattering noises,
and rousing your husband might get ya in trouble though ;^) which is why I am
tucked away in my office.
Yesterday I dragged myself around the short loop with Lou and Sam, and then I
went to sleep for almost two hours. Ridiculous! Then we went out to lunch at
Sushi Thai in Cary. Total perfect yummification. Then we went to Macy's and I
returned my brand-new, expensive, dripping Rowenta iron and replaced it with a
brand-new, less-expensive, non-dripping Rowenta iron. I started ironing
practically the minute I got home, so I am sure it does not drip water at all. I
ironed six shirts and then had to stop because I was tired. Basically, I spent
the rest of the day watching NetFlix Miss Marple movies and waiting for my
zombie exhaustion to make me fall asleep again (but it never happened).
I took only one anti-nausea pill yesterday. So basically I was just easily
tired. That is not bad at all! My cold and cough are almost gone, too, which is
good because I have two days of antibiotics left.
I finally finished the three Stieg Larrson novels. They were excellent, but they
took concentration (although maybe that is the chemo talking). Thanks to the
lady who warned me that I needed to have the third book in hand before I even
started reading the second book. She was right. I had to go from the end of book
2 right into book 3 without a break.
This morning I started the next Jack Reacher novel by Lee Child, One Shot. I am
getting bummed about how quickly I am working my way through these novels. When
my Mom first got me hooked by sending me the first in the series, Killing Floor,
I was so psyched that there were like 14 to go. It seemed like that number of
novels ought to keep me entertained for awhile. But I have been flying through
them. Lee Child is excellent at keeping the reader hooked. I haven't stayed up
late into the night reading like this in years. I usually put my book down early
enough to get a good night's sleep. "Got to go to work tomorrow," I think. But
not when I am reading Jack Reacher. I have stayed up way to long because I
couldn't wait to see what happened next. I just checked the list, and because I
read a couple out of order [gasp] I only have three to go. Argh. I just hope Lee
Child is busy writing number 15...
Do you think it's funny that I love these Jack Reacher novels as much as I love
the Precious Ramotswe novels? Opposite ends of the spectrum in crime novels, for
Posted by Karen at 4:11 AM 4 comments:
Saturday, September 18, 2010
Long Nap on Friday
Except for a quick run out to the pharmacy to pick up a refill of Campazine
(anti-nausea pill) yesterday, plus a walk through the grocery store for milk and
a cooked chicken, I did nothing at all. I slept all afternoon, I read a little,
and I watched some TV.
In the past, I have waited till I was definitely nauseated before taking
anything. I decided that was waiting too long. Once you get nauseated, it is so
hard to get rid of. So this time, at the earliest hint of nausea, I take a pill.
It's working out a lot better because the nausea hasn't gotten its grip on me.
It's sort of funny, though, to have settled on this most workable approach on my
last dose of Doxorubicin!
(I am hoping that this is a strategy I won't have to employ in the future, but
realistically I guess I have learned something that I will be able to use
My mouth has been really dry. This is a new side effect for me on Doxorubicin,
but a typical one for this chemo. I have been lucky to have avoided it till now.
Some people get awful mouth sores; dodged that bullet.
Lou is still sleeping, and I am trying to be as quiet as a mouse so as not to
wake him up. Today our plan is to return my fancy new steam iron to Macy's. It
drips water. Bummer.
At breakfast, I will take my last dose of Decadron! That means one more decaf
morning to suffer through, and one more day feeling sort of speedy yet
exhausted. I am hoping that tonight I will get a good night's sleep and not wake
up in the wee hours of the morning.
Both the Patriots and the Dolphins play on Sunday -- but not each other, thank
I guess that sort of wraps up the entire weekend!
Posted by Karen at 6:07 AM 1 comment:
Thursday, September 16, 2010
When Life Hands You Lemons
When life hands you lemons, the gang where Lou works sends you a big, beautiful,
lemony yellow bouquet to cheer you up!
Can you see the lemons? There is one in the bottom of the vase, underwater. And
there is one dangling from the flowers, on the right.
What an awesome bouquet! I love it! Thanks, everyone Lou works with!
Posted by Karen at 3:40 PM 1 comment:
Wednesday, September 15, 2010
Not Too Sick for Chemo
Hey, I got my last dose of Doxorubicin today!
The day started with some trouble. I waited a half hour for a nurse to access my
port and draw blood for the labwork (too many patients, not enough nurses) and
then the poor woman could not get blood return from my port. Saline went in just
fine, but no blood would come out. She fooled with it a bit, then quit. There
were too many people in the waiting room for her to keep fooling with my port.
So she walked me through a maze of corridors to a different department, where
another nurse used a needle to get blood out of my arm the old fashioned way.
I had a nice chat with Dr R, but my bloodwork was not back, so he could not say
whether I would be getting chemo. He sent me off to the cafeteria for a coffee
with the promise that he would phone my cell if I was not getting chemo. I never
got a call, and then I got paged to go to the treatment room to get chemo.
When we got to the treatment room, I warned the nurse there that my port was
acting temperamental. But you know what? It worked just fine for her! She got
great blood flow immediately. What a relief. So I got my last dose of
Doxorubicin with no trouble at all.
Lou is listening to a book on tape about the richest 400 people in the world,
and he kept shutting it off and telling me some interesting tidbit, like how
four of the top five richest people never graduated from college.
Anyway, we zoomed home and ate leftovers for lunch. Then Lou went to work and I
flopped onto my bed and slept for two hours.
I'm awake now and heading out to the pharmacy for some drugs.
Posted by Karen at 3:41 PM 1 comment:
Am I Too Sick for Chemo?
Today is supposed to be my last dose of Doxorubicin! But the question is, am I
too sick to get it? All depends on what the labwork says.
I started the antibiotic yesterday. I coughed a lot last night, waking us both
up a few times. You'd think maybe we'd be cranky this morning, but we are both
cheerful. I'm excited at the prospect of finishing up the Doxorubicin. Let's
killl a few more cancer cells today, and then go get a scan in three weeks.
But with this cold and my low neutrafil count, I might not get chemo today.
I was thinking about telling Lou to stay home today. If he is not with me, and
if it turns out I am too sick for chemo, then I could go straight to work from
Duke... but how crazy is that? If I am too sick for chemo, then I am too sick
Cross your fingers! I want this chemo!
Posted by Karen at 6:39 AM No comments:
Tuesday, September 14, 2010
Tomorrow when I go to the Duke Clinic, I am supposed to wear a paper mask to
protect other patients from my germs! Nice.
As it stands, I am still getting chemo tomorrow. Having a bad cold does not
necessarily keep you from getting chemo. It all comes down to what the lab says
about your bloodwork.
I coughed all night long. This morning, I started coughing up nasty yellow goop,
which means I have a respiratory infection. I've got an appointment with my
fabulous primary care physician later this morning, and I expect to come home
with a bag full of antibiotics.
On the phone and in email, a couple of my dearest friends have very kindly
suggested that if I had just called in sick last week when they told me to, then
maybe I wouldn't be so sick this week. Well, I'm not 100% sure that saying I
told you so is technically within the spirit of the Cheer Me On blog. ;^) It's
not called the Bum Me Out blog. Or the Tell Me Off blog.
I know I should have taken it easy last week. But that is so hard to do. With
the flowerbed, it was unbelievably satisfying to get those flowers planted. A
couple of times yesterday, I snuck outside in my PJs to admire my flowerbeds.
And with work, it is super hard to call in sick because I love what I do and I
have deadlines. Oooh, if it turns out I am too sick for chemo, then I bet I can
work from home for the rest of the week! Excellent! (I never learn.)
Posted by Karen at 9:15 AM 3 comments:
Monday, September 13, 2010
And on Sunday, He Rested
I spent all day Sunday resting.
Well, I ran out to the grocery store in the morning. Lou came with me, though,
and did all the heavy lifting.
I took Vitamin C, rested, watched movies, and read. My cold symptoms were pretty
serious yesterday (and today). Headache, sore throat, nasty productive cough...
I am starting to get a little worried about chemo on Wednesday. I called the
chemo nurse to give them a heads up that I have a bad cold.
Ooooh, I wonder if they won't want me coming in to the clinic at all because I
might spread my germs to other patients whose immune systems are compromised.
Lou just talked me into staying home today. I am bummed because I am looking
forward to a meeting at 11:00. Maybe I can try to do it over the phone. I guess
it depends on how bad my voice is.
Posted by Karen at 8:49 AM 1 comment:
Sunday, September 12, 2010
No Rest for the Wicked
I feel awful today. I have a headache, a very sore throat, and a nasty
productive cough. Strangely, my sinuses are clear. I have decided that this cold
would probably have gotten this bad even if I had spent Friday and Saturday
Of course, I didn't spent Friday and Saturday resting.
On Friday, I worked 10 hours in the office. On Saturday, I ran a million errands
and planted a lot of flowers. I'm happy with what I accomplished on both days.
Home Depot has chsysanthemums at an awesome price right now, and I picked up
nine plants last weekend. It took me a week to get them planted because every
hole I dug uncovered something strange, like pockets of gravel, or short lengths
of rope, or empty burlap sacks, or chunks of concrete. All the yellow
chrysanthemums went into the big flower bed in the front yard. That big flower
bed now looks perfectly ordinary and acceptable. I no longer cringe when I look
Yesterday I had to go back to Home Depot for more Miracle Grow dirt, and I
picked up one Balloon Flower plant to fill a gap in the small flower bed near
Posted by Karen at 10:38 AM 4 comments:
Friday, September 10, 2010
The Eye of the Storm
Yesterday must have been the eye of the storm, the calm pause in the middle of
I felt really wonderful yesterday. I didn't even blog because I was in such a
rush to get to the office. I had a great day, too. I ran around, talking to
people all day, gathering lots of good info to stuff into my book. I even
volunteered to update a particular chapter that on a topic that I loath and
fear. Not once did I cough. No germs did I spread.
But last night, the cough was back. I even woke up in the night coughing. Lou
woke up, too. And this morning, I've got the cough, the sore throat, the whole
So the debate in the Ross household this morning is, do I work from home today?
Lou wants me to stay home. I want to go in because I need to talk to some people
to clear up some questions I have. Lou counters that I could use the phone to
ask my questions. I argue that these questions are too complex to talk about on
the phone. Stalemate.
I am going to take another 12 hour Sudafed, rinse my sinuses, jump in the
shower, and see how I feel after that...
Next Wednesday is my last dose of Doxrubicin. I want to feel well by next
Wednesday. I wouldn't want to do anything that causes this cold to linger any
longer than it has to. I don't want to have the sniffles when the nausea hits.
Ooooh and the plan for this weekend involves the Museum of History and an
exhibit on George Washington!
Posted by Karen at 8:18 AM 3 comments:
Wednesday, September 8, 2010
No More Coughing
My cough is gone!
I still have sinus congestion, a sore throat, and a headache though. Yesterday
Lou gave me a 12 hour Sudafed, which worked great. It was the old formula for
which you must go to the pharamacy, show ID, and get written up in a logbook.
(The old formula is what people used to make methamphetamine, right? So
pharmacists had to make it harder to buy. Darned drug dealers making everyone's
life more complicated!)
I actually got in a full day of work yesterday. Someone had asked me to add
something to my book like two weeks ago -- and yesterday I finally did it.
That's a good feeling! Now I just have to get this new text approved by an
I am sort of torn about whether to work from home again today. I am not coughing
anymore, but I am not that well either. But today is my group meeting, which I
hate to miss. I guess I will go take a shower now and see how I feel afterward.
Posted by Karen at 9:03 AM 3 comments:
Tuesday, September 7, 2010
Supposed to Feel Great
Darn it, I am supposed to feel great from now till next Wednesday when I get my
last dose of Doxorubicin, but I feel awful today. My lungs are tight, my sinuses
are stuffed up, my back aches, I have a small dry cough, and I am tired...
basically I have a cold.
I have been sidelined by the common cold. Jeepers. I guess I've grown accustomed
to more dramatic illnesses like, "chemotherapy-induced nausea" or "fatigue
associated with a low blood cell count." Not the sniffles!
I slept as late as I could this morning, took some Sudafed and some Vitamin C,
and now I am going to log on to work. I'm not going into the office because I
figure I do not want to spread this germ and I probably will need to take a nap
Anyway, I had a fabulous long weekend:
•On Saturday, Lou and I went to the planetarium in Chapel Hill and saw a show on
black holes. It was awesome. I took away two things: that gravity is like
acceleration and that there are a disconcertingly large number of black holes in
our universe that are constantly sucking in all surrounding matter at an
alarming rate. My worries for the safety of the universe were abated by a
delicious lunch at the Weathervane restaurant at that store called A Southern
•On Sunday, we went for a really long walk in the neighborhood. I bought some
yellow mums on sale at Home Depot for the flower bed by the stop sign. My
wonderful neighbor Nick poured holy water from Lourdes over my head! And then we
wrapped up Sunday night at Chas and Darlene's house for dinner and a roaring
fire in the firepit.
•On Monday, Lou sprayed Round-Up on the crabgrass in the front lawn while I
planted some of my plants. After a couple of hours, it was too hot to continue
working in the yard, so we quit. We went out to lunch AGAIN and then did a
little shopping for the house. We finished the day by killing our second disc of
The Unit (Season 1) which we are hooked on. By the afternoon, I had started
feeling this cold creep up on me, with the exhaustion and the little cough, so I
ended my weekend on the couch under a blanket.
Posted by Karen at 9:12 AM 2 comments:
Friday, September 3, 2010
Happy Birthday, Mom!
Today is Patsy's birthday!
Posted by Karen at 8:15 AM 2 comments:
Wednesday, September 1, 2010
Jeepers, I was dragging for about a week, and it took its toll on my mood. It is
hard to be tired for a long time. Nothing seems fun when you are so tired.
So last night, I found myself reading psalms in The Bible. Not just any psalms
either. Just the lamentations! They are the ones that are like, Oh Lord, rescue
me from the mire!
The lamentations really cheered me up. Today I feel a lot better, both
physically and emotionally. I think the appeal of the lamentations is two-fold.
First, I got the message that there's lots suffering in the world, so much so
that it made it into The Bible. I am clearly not the only person with problems.
Second, my situation doesn't seem so bad in comparison. I am not in a pit with
my enemies rejoicing over me.
I am feeling so much better that I am actually headed into the office. (I have
been working from home so far this week.)
My friend Truett sent me this picture awhile ago. It is a snapshot that someone
in his congregation took of his church.
Late Afternoon Update
I went to the office and got some good work done. At about 2:00PM, I started to
see blank spots on my computer screen. Migraine! I had to head home. Total
bummer. The Maxalt helped, but I had a bad headache for the next couple of
hours. It's 5:00PM now and the headache is now mild.
Also, my new Rowenta iron arrived via UPS this afternoon, but a big chunk of the
plastic housing was BROKEN off and rattling around in the box. This iron is
really lovely looking, though. Macy's has the best customer service on the
planet, and they are expediting me another iron. All I have to do now is drop
off the broken iron at my local Macy's. A couple more days of wrinkly clothes...
Posted by Karen at 9:21 AM 2 comments:
Tuesday, August 31, 2010
Just Let Me Sleep
This last dose of chemo has sucked all the energy out of me. I am still taking
two naps per day.
Yesterday, I logged on to work from home. I worked for 2.5 hours, took a long
break for a nap and lunch, and then worked another 2.5 hours in the afternoon.
By then, I was toast.
I could take a nap right now.
Posted by Karen at 9:13 AM 2 comments:
Saturday, August 28, 2010
Avoid Your Favorite Foods
Helpful tip sheets about surviving chemo warn you to avoid your favorite foods
when you are nauseated, because you might associate that feeling with that food
-- and completely ruin your favorite foods forever.
I haven't ruined any food, but I think I might have ruined The Andy Griffith
Show in a similar manner. For the last couple of days, I have been nauseated and
too exhausted to sleep or read or converse intelligently. All I could manage was
watching TV. So I have been working my way through season 1 of The Andy Griffith
Show thanks to NetFlix. I really enjoyed the epsiodes, especially Don Knotts. I
had forgotten how hysterical he was! But I was sitting there, nauseated and
tired and occasionally drifting off to sleep. So I found myself clearing out
season 2 from my NetFlix queue. I just can't face it right now.
I've got some Miss Marple coming instead. Plus I have a lot of good stuff piled
up in my Tivo queue.
It's about 4:30AM on Saturday. I am thrilled to report that I am finally not
nauseated. I am trying to be very quiet so I don't wake up Lou or Samantha. I
cannot iron, because my iron died yesterday. It got really hot, burned my
ironing board cover, and then refused to heat up after that. Total bummer.
(Apparently, no matter how awful I feel, I can still amuse myself by ironing.)
I am not sure what the heck wrinkly outfit I am going to wear to work on Monday!
But I have surfed the web (oh the joy of chemo insomnia!) and order a new
Rowenta from Macy's.
Rowenta DW9080 Iron "Steamium"
I am pretty psyched! Free shipping, so I have to wait an entire week. Maybe one
of my neighbors will take pity on me and lend me their iron for some Sunday
Update at 8:30AM: I walked Sam in the dark at 6:00AM, a slow stroll around the
block, sniffing everything. We even woke up a little birdie sleeping on the
front porch when we left the house! Then I went along for a longer walk, for a
total of 2.6 miles this morning. There was this amazing sweet smell on the
Posted by Karen at 4:35 AM 4 comments:
Thursday, August 26, 2010
Successful Dose 5
Yesterday during Doxorubicin dose 5, I hope we slaughtered a bunch of cancer
The whole day went really well. Lou and I left the house just before 7, and we
got to the checkin counter at Duke just before 8, when my appointment was. I
didn't go in for bloodwork till after 8:30 but that just gave me time to read my
Jack Reacher novel.
Dr R reported that my neutriphils count is 1400. They do not like to give you
chemo if it is not 1500, but he said we would go ahead anything. I said that I
really hoped I was not going to have to get another Neulasta shot, and he said
no. Thank God! That was a week and a half of misery I am glad to avoid.
Neutrils are white blood cells that are for cuts and infections. They are what
makes pus yellowy white. Ick. Is there anything I can do to bring that count up?
I need to be careful about being around germs. I also need to get enough sleep.
Luckily, I had my favorite nurse in the treatment room. (Well, they are all
awesome.) This time, my port gave us no trouble at all. (Last time, it was
clogged and it took like an hour and a half to clear it.) We mostly talked about
local restaurants that we ought to try.
On the way home, Lou and I always stop for lunch. This time, we went to The
Olive Garden because I was really craving eggplant parmesan. It was very good,
and we were seated immediately. Whenever we try to go there for dinner, there
seems to be a long wait because it is popular and packed to the rafters.
But I have to admit that I was tired and generally not well for the rest of the
day. I tried to sleep early in the afternoon, but I couldn't. It was like I was
too tired to fall asleep. So I gave up and read Jack Reacher. Later, I started
watching espidosdes of The Andy Griffith Show and fell alseep for at least an
hour in the very late afternoon.
This morning, I woke up at 5:00AM totally wide awake, so I got up and checked
email and played with Sam. Today I have physical energy (must be the Decadron)
but I am mentally tired. Lou walked Sam alone, then he walked me too! It is very
cool right now, nice walking weather.
Oh, and today I started eating Nutrisystem food again. My weight has gone up a
bit since coming off the clinical trial drug that miraculously made me totally
disinterested in food. Because I threw out my clothes as soon as they got too
big, I need to stop gaining weight before all my clothes don't fit!
Posted by Karen at 8:25 AM 2 comments:
Tuesday, August 24, 2010
Fruity Candy Plans
Tomorrow morning, I get Doxorubicin dose 5, and then there is only one more dose
I have been feeling really great, physically, for at least the last week. I made
the most of it. Awhile ago, I asked my neighbor Pat for some help with this
flowerbed at the edge of the road that just looks awful. So this weekend, we
came up with a plan, went shopping at three local nurseries, and brought home
ten plants. Ten plants might not sound much, but it was more than enough work
planting them! The flowerbed looks better but still needs some work. I feel as
though I have some momentum and can handle the rest of the beautification
But I caught myself over the weekend thinking, "Oh, rats, chemo Wednesday, that
is going to stink."
I shook that off and reminded myself that it's more like, "Yahoo, chemo
Wednesday, let's kill some cancer cells!"
I had been really struggling with nausea, but for dose 4 we changed some things
and it helped tremendously. Just having fruity candy in my mouth when they
accessed my port made it so that I didn't start the day completely nauseated.
And then the new medication, Emend, helped through the weekend. So I am looking
forward to feeling not too terrible Thursday through Sunday. Whatever happens,
by Sunday afternoon, I'll be feeling fine.
So my only remaining problem? My appointment is for 8:00AM tomrrow! Lou and I
are going to have to get up wicked early to get to Durham by 8:00AM.
I better not read in bed tonight. I am reading Lee Child's 5th book in the Jack
Reacher series, and just like the others, it is so gripping that it makes me
stay up late into the night, reading long after I ought to have gone to sleep.
These books are so awesome. In case you are looking for something good to read,
the first one in the series was Killing Floor by Lee Child.
Posted by Karen at 7:29 AM 2 comments:
Wednesday, August 18, 2010
Studying Ancient Egypt
Lou and I continue watching the Teaching Company DVDs on Ancient Egypt in
preparation for the big trip in April. We just watched two lectures on King Tut.
The first lecture explained how Howard Carter found the tomb in the Valley of
the Kings. The second lecture was all about King Tut's life and what happened to
his poor wife after he died. The second lecture was especially interesting
because the professor posited his own personal and controversial theory that
King Tut was murdered.
If you have any interest in learning about King Tut, here is an interesting
I am feeling great this week! Yesterday I worked for ten hours, and I walked to
Build T for BBQ chicken lunch. I just feel very good. I expect to continue
feeling this good till chemo next week.
Today I woke up early and went for a longer walk. I will have to measure this
new route in the car to see how long it is.
My only complaint is that I have a knot in my left shoulder, and my massage
therapist told me I cannot get a massage during chemo. Total bummer. I'll see if
Lou is up for jumping in the hot tub this morning.
Posted by Karen at 8:32 AM 3 comments:
Monday, August 16, 2010
Lou and I have been married for eighteen wonderful years.
We went to Kanki at the Crabtree Valley Mall for sushi lunch on Saturday to
celebrate. We sat in the dimly lit, crowded restaurant, holding hands across the
granite topped table, and decided to have another wonderful eighteen years
together. Then we ate some awesome raw fish.
I really am married to the best guy in the whole world.
Oooh, after lunch, we wandered over to the Williams and Sonoma and bought a
Cuisinart convection bread machine so Lou can start making bread at home again.
Posted by Karen at 8:07 AM 5 comments:
Wednesday, August 11, 2010
Little things can really have a huge impact on your quality of life.
For months, my fingernails were a huge problem for me. It was the clinical trial
drug. My nails were very thin and flexible -- and they chipped or tore virutally
time I touched something. I had to keep them trimmed really short, because when
they tore, it was often up over the quick, which is so gross.
I could not put on a necklace because pushing back the tiny knob on the clasp
was enough to crumple my fingernail.
Anything that required using my fingertips was hard to accomplish, because my
fingertips were sore.
Well, the good news is, that is over! My fingernails are now back to normal,
nice and strong. And my fingertips no longer hurt.
Posted by Karen at 8:59 AM 2 comments:
Tuesday, August 10, 2010
One evening, we saw a family of deer making their way through the neighborhood.
Mom was leading her three little fawns across our neighbor's lawn, and Dad was
bringing up the rear.
Dad glared at us as we sat there taking pictures from the car.
Posted by Karen at 7:39 AM No comments:
Sunday, August 8, 2010
Weekend of the Long Naps
Both yesterday and today, I was struck down by complete exhaustion and forced to
surrender to a long nap. What a waste of weekend minutes! But I admit, I was
nonfunctional before each nap, and much better afterward.
Two hours almost to the minute is what one of these naps takes.
Both days, though, I started off early with a 2-mile walk. In the morning, I see
and hear a lot of birds. I am hoping that these walks will keep me strong. My
plan is to stay strong till a cure becomes available.
Posted by Karen at 4:59 PM 3 comments:
Saturday, August 7, 2010
Last weekend, Rich, Lisa, Lou and I went to Mount Airy, NC, for the first time.
That's the hometown of Andy Griffith. It's also "Mayberry USA," the setting for
The Andy Griffith Show.
It rained on us, which we blamed on our Seattle friends, but we still had a
I have not laughed this much in a while!
So here I am outside Floyd's Barber Shop. Looks like Floyd took a little too
much off this time, by golly! What can you expect for an $8 haircut, I guess.
Here's Lisa and me with the statue of Andy and Opie going fishing.
I put The Andy Griffith Show in my NetFlix queue.
Posted by Karen at 5:00 PM No comments:
Friday, August 6, 2010
Eavesdropping in the Treatment Room
On Wednesday, I sat next to a guy in his sixties, and his wife. The guy was
getting chemo. They smiled and said hello but did not seem to want to talk.
At some point, his nurse came over and started patient education. This was the
first time the guy was getting chemo. It is always interesting to listen in on
patient education. One thing is that I am surprised at how much I know, and
another thing is that I might pick up something new. Every chemo is different
and has different things to watch out for.
Whatever this guy is getting, he has to come back the next day for a Neulasta
shot. So right at the end, the nurse is standing there with her palm pressed to
her forehead, saying, "I just heard about something that can help with Neulasta
bone paine, it's over the counter and you take it for something else, but for
the life of me..."
So I piped up, "Claritin and Aleve?" On Monday morning, my favorite
port-accessing nurse had told me about how her doctor recently presented a paper
on how people who took Aleve and Claritin experienced significantly less bone
pain after the Neulasta shot.
"Yes! Claritin! Thanks!"
So, this was one time when butting in was a good thing!
Posted by Karen at 9:03 AM
Thursday, August 5, 2010
Emending the Plan
I dragged around all afternoon yesterday, yawning and sleepy. I actually had my
eyes closed during part of one Egypt lecture. But when it was finally time to go
to bed, I woke up and got all fidgety. Darn that Decadron. Dr R had given me
half the usual dose because I started a new anti-nausea drug yeseterday, so I
had hoped to be able to sleep easily. The new drug is Emend. We're trying it
because last time, I was on Decadron, Zofran, and Compazine and still was
nauseated. So Emend is like the big gun; with any lucky I won't need any Zofran
I also think it made a big difference that I took Compazine and Jolly Ranchers
yesterday so that I did not start feeling mauseated when they accessed my port.
Once that nausea starts, it is so hard to get rid of.
Last night, Lou went to bed without me. I puttered around quietly in my office,
surfed the web looking at silverware, and watched part of a Miss Marple DVD from
At about 2:00AM, a thunderstorm was right over our house. It was amazing. It
woke up Sam and Lou, and then they came looking for me. Lou talked me into
trying to come to bed, but first I had to burn off some energy, so I washed the
baking dish which had been sooking in the sink since dinner and then I tried
washing all our existing silverware with a paste of baking soda to try to make
it shinier. Mixed results. (Again with the mixed results!)
I woke up just after 8:00AM. That is five hours of sleep. I feel okay right now,
and I plan to log on to work for a half day.
Here is the outrageous silverware I fell in love with while I was surfing the
web. It's Palace Orchard from Reed and Barton, totally on sale right now because
it is being discontinued. It is so bold and beautiful! I hope it will look good
next to my good china, and not be a distraction.
Here is my good china.
Posted by Karen at 10:22 AM 2 comments:
Wednesday, August 4, 2010
Not a Rare and Delicate Flower
I won't make you wait. Lou and I went in to see Dr R this morning, and he told
us that Monday's CT Scan shows "mixed results." A couple tumors grew, a couple
tumors shrank, and no new tumors appeared. Because the results were mixed, it's
sort of a guessing game as to whether to continue on Doxorubicin.
Ultimately, we decided to stay the course. (I never seriously considered
quitting.) We would not want to give up on Doxorubicin too soon -- because I
have only two or three additional chemos to try after Doxorubicin! Radiation is
still on the table, but only if a tumor gets so big that it starts to cause
trouble that cannot be solved by pain meds or chemo.
So I got chemo today on schedule.
I suggested (and Dr R agreed that it was possible) that the tumor growth could
have occurred in the five weeks between the last scan and the start of the
Doxorubicin. That's the window where I was bouncing back from the clinical trial
drug and cruising to Greece on the Celebrity Equinox with my honey.
Also, let's not lose sight of the fact that no new tumors have appeared. That is
just super duper, completely fabulous, front page news. My tumor count has been
pretty steady. Last April/May, they found eight tumors, and then in October they
added one teeny spot on L5.
Getting the chemo today was no walk in the park, though.
My port would not give any blood return. It took in the saline really easily,
but it would not output any blood. That was not cool, especially for such a
tricky chemo as Doxorubicin. Two nurses worked on me. I was rolling from side to
side, leaning back, leaning forward, coughing, raising one arm, raising the
other arm, taking deep breaths, and generally just trying anything to get the
port working. Nothing worked.
They decided to try a TPA, where they inject an anticoagulant into the port, let
it sit for awhile, and then suction it back out. (You do not want to flush the
anticoagulant into the patient's system!) The anticoagulant cleans out the
blockage inside the port mechanism, and you get instant blood return. (They
theorized that maybe the nurse on Monday did not flush me well enough or did not
use heparin. From now on, I plan to pay closer attention when someone
de-accesses my port.)
After 30 minutes, Nurse S. tried the port. Only anticoagulant came out -- no
blood return -- so she injected it back into the port. Feeling
uncharacteristically pessimistic, I asked what would happen if it still didn't
work after an hour. Nurse S. suggested that we could inject the Doxorubicin via
a normal IV, but yikes I wasn't too thrilled about that and offered to come back
and try again tomorrow. Nurse S. went off to work on other patients.
She came back at about the 75 minute mark. She explained that she had worked out
a plan with the charge nurse. If the port didn't work now, I would sit for
another hour and try again. If it still didn't work, she would consult Dr R and
let me go home with the anticoagulant still in the port, so it could sit
overnight. I would come back tomorrow, and it would work. That all sounded
better than using a vein for the Red Devil! So we had a plan.
Then she tried the port, and this time it worked like a charm. Nice dark red
blood filled the tubing so fast, it was like magic. Yahoo! We were good to go.
The rest of the chemo went smoothly. We finished about 1:30PM. (We had come into
the treatment room at about 10:30AM.)
Oh, and I noticed that the last two times anyone accessed my port, I got
nauseated by the saline flush. Mildly nauseated, but persistenly so. When they
access the port, there is a flood of taste and smell like bathroom cleaner. It
has always seemed gross, but was never a real problem till recently. So Dr R had
me take a Compazine, and the Nurse S gave me a Jolly Rancher candy. No nausea!
Excellent! Even better, Nurse S. assured me that I was not a rare and
pathetically delicate flower, because lots of people get nauseated by the
Posted by Karen at 3:58 PM 6 comments:
Tuesday, August 3, 2010
Questionable Magazine in Waiting Room
As I sat in the waiting room at Duke yesterday, I started flipping through a
magazine and found an article about how lots of people die every year from the
big dose of radiation that you might get during a CT Scan. Yikes! I have to get
a CT Scan every two months. I do not want to be reading this kind of info... I
put that mag down and started reading the novel I had brought with me instead.
Otherwise, my scan day was quite pleasant.
While I was in the machine, after they took the first few scans, there was a
long break where nothing was happening. I drifted off, then sort of woke up and
realized that a significant amount of time had passed. I started wondering if
they had forgotten about me. I always wonder what would happen if the technician
keeled over dead from a heart attack while I was in the machine. How long would
I be stuck in the machine before someone noticed?
Right when I was about to call out, "Hellooo there..." the technician's voice
came over the speaker to tell me that they had not forgotten about me, that they
were comparing the scans to the set from two months ago. Oooh, I wanted to ask
how the comparison was going, but I didn't. I don't think that the technicians
are allowed to tell you anything. And rightly so! I want the offical analysis,
the final report.
Tomorrow (Wednesday) I get the results from Dr R.
Posted by Karen at 1:37 PM 1 comment:
Wednesday, July 28, 2010
Some New Drug
When I think back to my last dose of chemo, I was so nauseated! The nausea
started very quickly, about eight hours after the dose. And it lingered for two
and a half days. No vomiting, however, which is awesome.
The Physician's Assistant said that there is some fantastic, new, expensive
anti-nausea drug that I will have to try at my next dose of Doxorubicin. I wish
I had asked her the name of the drug. I could have looked it up in the meantime.
Ah, but I also keep reminding myself that there is a scan on Monday. If the scan
results are good, I'll continue with the Doxorubicin and try the new anti-nausea
drug. If the scan results are not good, I'll quit the Doxorubicin and switch to
something else. It's a funny mental balancing act, not knowing what is going to
Posted by Karen at 8:28 AM 6 comments:
Sunday, July 25, 2010
Home Depot Migraine
Right before taking the first bite of my fabulous $1.50 Home Depot polish
sausage lunch yesterday, I saw sparkly lights and realized I had a migraine. I
took a Maxalt immediatly, but the migraine must have been going for about 15 to
20 minutes already.
We were able to have lunch and shop and go home -- and then the migraine started
all over again. Total bummer. I am not clear what to do in a case like that. I
did not think that I could take another Maxalt for 24 hours, so I just sort of
went to bed and suffered. (Since then, I received another copy of the insert
from Rite Aid and read that I can take another does after waiting 2 hours. Great
news for the future.)
Lou woke me up at 6PM so we could go to dinner with Meredyth and Woody. I felt
pretty good by then. We had a great time.
Posted by Karen at 1:20 PM 1 comment:
Thursday, July 22, 2010
The No. 1 Ladies Detective Agency discs have started arriving via NetFlix. I
love the books, love love love the books! Alexander McCall Smith is a genius!
The TV show is very good, and I am enjoying it a lot, but Mma Ramotswe on TV is
a little different than Mma Ramotswe in my head. She seemed more calm, more
serene, when I read her.
I am lucky right now. I have some NetFlix discs to watch, my class on Ancient
Egypt to watch, and four new books to read:
•The Woods by Harlan Coban
•Back Spin by Harlan Coban (Number 4 in the Myron Bolitar Series)
•Killing Floor by Lee Child
•The Beach House by Jane Green
•The Girl With the Dragon Tattoo by Stieg Larsson
I finally finished Laura Bush's memoir! I am really glad I read it, and I loved
most of it. I admit I sort of skimmed the last quarter of the book. It seemed as
though the author ran out of steam, and the last quarter didn't have any
emotional impact. It was like, "then I did this, and then I went here, and then
I talked to these ladies about this..." (I hate to say that, because I would not
want to dissuade anyone from reading her book.) So, I'll tell you again, I loved
most of this book. It made me laugh. It brought tears to my eyes many times. I
even learned a lot. It just did not end that strongly. Part of that is probably
me! I really struggle with nonfiction and often rely on an airplane flight to
force me to finish a nonfiction book.
Posted by Karen at 8:20 AM 1 comment:
Tuesday, July 20, 2010
Heat Wave and Hot Tub
Yesterday I started off with a lot of energy. I was also (if I may say so)
really mentally sharp -- and as a result got a lot of tricky work done on my
project. Days like that are gifts!
But around lunchtime, I started struggling with exhaustion. It took more and
more effort to keep working, till by 2:00PM I knew I needed to quit for the day.
So I headed home, fell asleep, and woke up later feeling a lot better. I think I
could have slept for hours longer, but Sam woke me up with a bunch of doggy
growly noises. I swear she did it on purpose because it was 5:00PM, time for her
dinner. My old puppy school instructor would be disappointed to hear that the
first thing I did was get her dinner!
Last night, I had aching ribs and muscle spasms in my neck and back. I
definitely remember that from last summer, so I am thinking it must be the
Neulasta shot. Tonight, I plan to jump in the hot tub and relax those muscles.
I caught a whiff of something bad yesterday morning outside my car, and I
wondered maybe if I had driven over something gross. Nope, turns out that I
forgot to bring my leftover salmon filet into the house on Saturday! It sat out
in the hot car for days. Man, that is a bad stink. I left all the car windows
rolled down last last, and I hope the car is aired out this morning.
Posted by Karen at 8:04 AM 1 comment:
Monday, July 19, 2010
Now that the Decadron regimen is complete, I can drink regular tea this morning!
Yum! No wonder I'm a happy person; it does not take much to make me happy.
Since chemo on Thursday, I have had to totally avoid all caffeine, because the
Decadron hypes me up enough without any help. If I have any caffeine, then I
feel unpleasantly speedy. And Lou has to say, "Please stop talking for a while,"
in the nicest possible way.
But today I am back with my regular tea. I am sitting here in my dark office,
drinking a huge mug o' tea. No email to speak of this morning, except for a few
shipping notifications from my online shopping insomnia binge the other night
Posted by Karen at 5:48 AM No comments:
Sunday, July 18, 2010
There is something sort of great about waking up early in the morning. Today Lou
and I went out to Brig's for breakfast and then did the grocery shopping for the
week -- and got home by 10:30AM.
The rest of the day is sort of dragging, though. I cleaned the guest room closet
because George and Rich and Lisa are coming in the next couple of weeks... and I
scooped dog poop in the backyard. But overall I am tired and unmotivated. Good
thing there is no ironing left to do.
I haven't had a good time the last couple of days. There has been a lot of
nausea, but no vomiting at all. I phoned the "oncologist on call" at Duke
yesterday because I had been taking the max of everything (Decadron, Zofran, and
Compazine) and I was still nauseated. So she said to take an extra Decadron.
That worked wonders! And today I am feeling no nausea. Yahoo!
I am really looking forward to August 2 (scan) and August 4 (results) to see if
this stuff is working.
Posted by Karen at 2:31 PM No comments:
Saturday, July 17, 2010
Email From The Golf Course
Dr R sent email from either the beach or the golf course saying that I ought to
get the Neulasta shot, so I went to Duke on Friday and got it. The shot itself
took 5 seconds. The entire journey and wait was 2 hours. Not bad, but I was
wiped out when I got home. I bounced back after lunch, worked some more, and
then crashed again.
I am glad I got the shot, grateful that I have good insurance, but maybe a
little nervous because I rememebr from last summer it made me feel as though I
had the flu.
Plus I have this constant headache, which might be from the Zofran, because the
bottle has a sticker that says, "Might cause headache." It was NOT the power of
suggestion either -- I had the headache long before I noticed the sticker.
Ugh, and the Decadron woke me up at 3:00AM. I tried to go back to sleep but got
more and more restless till I just got up at 3:25AM. (Did not want to wake up
Lou!) I have been shopping online since then, visited my neighbor's PartyLite
Candle web site, spent some time at Barnes and Noble too. Now I think I 'll just
watch TV for awhile and iron the backlog of Lou's t shirts.
Posted by Karen at 4:37 AM 1 comment:
Friday, July 16, 2010
Is My Cup Half Full or...
Is my cup half full or is my cup ready to be dumped out because there is a fruit
fly swimming in my beverage?
Translation: Was yesterday's dose of Doxorubicin my half way point, or was it my
I'll have a CT Scan on August 2, and then on August 4 Dr R will tell me if this
chemo is working. By working, I mean the cancer either stayed the same or
shrank. If it is working, we continue on with the next three doses. If it is not
working, we quit Doxorubicin and come up with a new plan.
Yesterday went okay.
My neutrafils count was low, at the actual cutoff point for whether they would
give me chemo. (Neutrafils, which I might be spelling wrong, is one of the
components of white blood cell count and is responsible for fighting off
bacteria.) I asked about a Neulasta shot, and the PA said we ought to wait and
see if it drops further. It was funny, Lou and I were like, why wait?! So she
will email Dr R at the beach and ask him what he thinks. I hope to hear today.
I was very surprised to feel nausea yesterday. Previously, I have felt no nausea
on the first day. With the drugs they give me in the IV, I really shouldn't feel
nausea on the first day. So I was in complete denial for hours as the mild
nausea sat in my throat. "I think I feel mildly nauseated, but that's not
By 8:00PM, the nausea was a little stronger, and I realized I really was
nauseated and took a Compazine, hoping that it would also help me sleep. It
seemed to take a long time for the nausea to go away and a long time to fall
asleep. But eventually it worked.
When I woke up this morning, I did not feel nauseated. Today I start taking
Decadron, which really helps to keep the nausea way. I am also going to take
Zofran too. That is what I did last time, to keep the nausea from starting.
Since it already started yesterday, then I think I really need it.
Posted by Karen at 5:53 AM No comments:
Tuesday, July 13, 2010
My fingernails have been a disaster for months and months.
The Gem/Tax chemo last summer made them really thick, with ridges. I didn't
think that was very nice. Then the clinical trial drug really messed up my
nails. They became paper thin, flexible, and easy to tear. Yikes. I tried to
keep them trimmed because any small rough spot could catch on something and
become a tear, and any length could get banged and cause a big break. I also
tried painting them with clear, tough polishes but that didn't seem to help.
(Maybe I did not put on enough coats.)
Well, I am thrilled to report that my thumbs seem to be bouncing back. The nails
on my thumbs are no longer completely bendy and paper thin. They are like
Now I just have to wait for my other digits to catch up.
Posted by Karen at 8:10 AM No comments:
Friday, July 9, 2010
It's In The Car
This time around being bald, I could not face the wig. So I have been wearing
baseball caps -- and a couple of times, scarves. It seems to be working out
fine. I'm really comfortable, which is all that matters this time around.
Last time around, it mattered a lot to hide the fact that I was getting chemo.
That was what the wig was about. This time, I don't care about hiding it. (I
think the fact that it is going pretty well has something to do with not needing
to hide it. I am not nearly as messed up this time.)
The funny thing is, my car is filled with baseball caps. I wear a cap all day
but take it off when I get into the car to go home. Then I forget it in the car.
Lo, there are now at least six caps in the car! Pretty soon they'll all be in
the car, and I won't have to decide which one to wear till I get to the parking
lot at work in the morning.
I do need a white cap, though. Or I need to go to the fabric store and get some
white fabric for a scarf. Maybe a cool eyelet so my head could breathe... This
time of year, I am wearing a lot of outfits that would look best with white
Posted by Karen at 8:32 AM No comments:
Tuesday, July 6, 2010
Lots of Fun
I had so much fun this weekend! Here we are at Chas and Darlene's house, after a
cookout and swimming in their awesome pool.
At the same party, we also got to celebrate a huge vistory for our friend Mo and
his dog Chloe. At an agility competition in Charlotte this weekend, Chloe won a
MACH (Master Agility Championship), which means she has accumulated an amazing
750 points for wins over her career as an agility competitor! This
accomplishment took 4 years of hard work.
Here is Mo holding a cake that says, Congratulations Mo and Chloe.
We had a great time hanging out at Chas and Darlene's house. Around 9PM, though,
I really crashed. I was suddenly exhausted and we split. So we missed the
Posted by Karen at 8:36 AM 1 comment:
Thursday, July 1, 2010
Something To Look Forward To
K A R E N
That is my name spelled out in hieroglyphs that I found on the web!
Lou and I have booked a trip to Egypt for next April. I have wanted to see the
pyramids for years and years, but I didn't think that Egypt was a safe place to
go. Turns out that Egypt is very tourist friendly and safe. Plus, the dollar is
I know that I already told you about how we booked a Celebrity cruise for
October 2011 that had two days in Egypt, and that was exciting enough. (We are
cancelling that cruise!)
On Father's Day, we went to a play with Nick and Sharon, and in the playbill,
there was an advertisement for a Deluxe Egyptian Adventure. As we waited for the
play to start, we read through the itinerary and were completely blown away.
It's a 10 day trip, starting and ending in a 5 star Cairo hotel, but the entire
middle is a cruise on the Nile on the M/S Jasmin! So... instead of two days in
Eqgypt and HOURS on a bus we get eight days in Egypt and very little time on a
bus! (The travel agent said that bus rides are 30 minutes or less at each stop
on the Nile. Gosh, I hate being trapped on a bus.)
This tour will benefit the NC State Arts Program. It is run by The Travel Guys
of Raleigh. Here is the official trip link in case you are interested in joining
Here is a random link that I found that shows the boat we'll be on, on the Nile:
If you decide to join us, tell The Travel Guys we sent you so we can get $50 off
our price! ;^) We sent in all our paperwork yesterday. We signed up for travel
insurance, just in case we have to cancel.
Egypt seems like the kind of place where you want to know a little something
before you go. Sort of like Rome. You have to know something in order to
maximize your enjoyment. So I sent away for a Teaching Company course on ancient
Egypt. It's a series of 48 lectures on DVD, and we have already watched six of
them. It's awesome. I just wish I also had the CD version so I could listen
again to each lecture in the car, to reinforce it.
Posted by Karen at 8:47 AM 2 comments:
Tuesday, June 29, 2010
Big Blue Pills
On Saturday, I noticed a sprinkling of delicate red bumps at my newly shaved
temples. I knew immediately what it would turn into: a painful infected mess of
a rash covering my face and scalp. I've had this rash a couple of times now, and
it is from the chemo.
In the past, I waited to talk to my doctor till the rash was just unbearable.
This time I wanted to see if I could stop it before it got too bad. Why be
miserable if I can avoid it. Also in the past, Dr R was hesitant to prescribe
antibiotics -- he got me to dab my head with cortizone cream instead (which
helps, but slowly and messily). However, my primary care physician Dr S did not
hesitate to give me antibiotics when he saw this rash last summer. I decided if
Dr R gave me any flack, I would go see Dr S instead.
I called my nurse at Duke on Monday morning and asked for antibiotics. No
problem, they called in a funky antibiotic prescription for me immediately. I
have to take a big blue pill every six hours for the next seven days, and I
cannot lie down for at least ten minutes after taking each pill. Oh, and the
insert has a frightening description of some kind of rare diarrhea that can
actually kill you.
I took the first pill at 7:00PM, went to bed at 9:00PM, and set my alarm for
1:00AM. I was really disorientated at 1:00AM when the alarm went off. I managed
to take the second pill and then just stood in the kitchen for ten minutes
wondering what happens to you if you lie down too soon. Meanwhile, my alarm
starting going off again in the bedroom because I had hit snooze instead of
turning it off. (Lou was thrilled at being woken up twice.) I reset the alarm to
go off at 7:00AM for the third pill, but by then I was so anxious, I kept waking
myself up the rest of the night!
I am exhausted. There is no way I am taking this pill every six hours tonight.
I'll do the best I can, maybe aim for eight hours overnight.
As a result of the completely disrupted sleep and the chemo, I had a very very
bad morning. I started driving to work, realized I could not make it, and headed
home. Then we lost power! I ended up back in bed, which helped, because now I am
Power is back on, which is good, because I don't want to know how hot it can get
with no air conditioning.
My new favorite beverage! Thanks to Bonnie at work for lending me a bottle
Posted by Karen at 12:34 PM No comments:
Sunday, June 27, 2010
Saturday morning started off great when I woke up happy and energetic. We all
went to the new Brigs for a fantastic breakfast. Patsy got ginormous pancakes
and shared them with everyone.
Then we ran some errands at Michaels and Dicks, but then I totally crashed. I
was suddenly completely exhausted. I asked Omer if he could drive us home. I
went to bed, but was so tired, I could not fall asleep. I just lay there for a
long time resting. I felt somewhat better when I finally got up, but I was
basically exhausted for most of the day.
I perked up in the evening. We took this picture after dinner.
This morning, I feel great again. I slept well but had elaborate exhausting
We had a fun breakfast; I made salmon bagels for everyone but Patsy. I am so
glad that my parents came out to help! Having them here was a huge help, and a
huge comfort. Plus a lot of laughs.
After sending Patsy and Omer off on their journey home, Lou and I walked the 2
mile loop to the gate. I have just come back from grocery shopping all alone --
I have not had to do that in a month! My plan today is to putter around the
house, do some ironing, and go out to dinner tonight with a bunch of people in
the neighborhood to celebrate Nick's birthday.
Posted by Karen at 9:26 AM 1 comment:
Friday, June 25, 2010
Much Better Than Last Time
Gosh, yesterday was much better than my first Thursday after Doxorubicin. I took
the Decadron and Zofran on schedule, and had no nausea. (I did have a little
nausea Friday night, but took a Compazine.)
I loined Lou and Sam for the short loop walk on Thursday morning; luckily I
bumped into a neighbor headed out to the gate, so I left Lou and Sam on the
short loop and took off on the longer loop. Poor old Sam is no longer interested
in long walks. Four-tenths of a mile is pretty much her limit, but she would
like to do it twice a day.
No caffeine for me at all yesterday, to try to keep the Decadron speediness
under control. That might have contributed to my mild all-day headache.
It took me all day, but I worked a half day from home. I also went out to lunch
with the gang (including John next door) and drove Lou to the Stock Building
Supply to pick up the window sash they manufactured for us to replace our first
window broken by a golfer. (Golf balls don't break windows. Golfers break
So to compare this dose of Doxorubicin to the first dose, this is much better.
By now, last time, I was a complete zombie, still fighting to get the nausea
under control (and I would not succeed till later today).
Oh, but I am bald now. But that is a relief after the massive shedding that
Posted by Karen at 5:51 AM 2 comments:
Thursday, June 24, 2010
Second Big Dose
Yesterday I got my second big dose (5 syringles) of Doxorubicin. Everything went
well at Duke. Lou, Patsy, and Omer came along as planned.
The only disappointment was that I forgot to bring in a bag of novels that I had
planned to abandon in the treatment waiting room. Ah, next time.
My hair has been falling out a lot in the last couple of days, till it looked
sort of awful unless I was wearing a hat. So yeasterday afternoon I got my head
shaved. At this point, my plan is to wear hats.
I took an Ambien last night, because otherwise I would have been awake all night
once the Decadron kicked in. I am hoping to work from home today, do I needed to
I told my nurse yesterday what happened after the last dose, how not talking the
Decadron pills really did not work out, and that I was very nauseated and it
took multiple does of Compazine and Zofran to get the nausea under control. She
suggested that in addition to the Decadron pills, I should also take the Zofran
starting this morning. I should save the Compazine if I actually feel any nausea
(the compazine is the one that makes me sleepy).
So that is the plan.
Posted by Karen at 6:48 AM 3 comments:
Monday, June 21, 2010
The 15-day deadline came and went last Thursday without any of my hair falling
out! I thought maybe I had dodged this bullet, maybe my hair said, "Not again.
We are not falling out again."
But this weekend, I definitely saw some hair mixed in with the shampoo suds in
the shower. Although, when my hair was dry, it looked exactly the same.
Last night, I woke up with my scalp hurting from the pressure of my head on the
pillow. That happened in 2007 and 2009 before my hair started falling out.
I'm still hoping that maybe my hair will just thin out. I am not going to run
out and get my head shaved. I'm going to wait and see what happens.
Hope for the best, plan for the worst, expect nothing. I don't know if this
counts as planning for the worst, but Meredyth is knitting me a cap. We had fun
on Friday going to a yarn shop, looking for a lightweight soft yarn. We got two
yarns, a pink and a tan. One is silk and the other is linen. Meredyth is going
to try a pattern that has a lot of air holes, because otherwise a knitted cap
will just be too hot.
Posted by Karen at 8:03 AM 2 comments:
Sunday, June 20, 2010
Fourth Migraine in a Week
I had migraines on Saturday, Monday, Wednesday, and then Saturday again.
Last night, I had my fourth migraine of the week. It was already well under way
when I noticed a small blob of sparkly lights in the middle of my vision. That
means I missed about 15 minutes of light sensitivity and blank spots.
I took Maxalt immediately. The sparkly lights increased (as usual) and lingered
for 20 minutes (as usual). When the sparkly lights go away, the actual head ACHE
starts. But last night, no ache. Well, I had a teeny tiny headache. But that is
I did not have to go to bed! It's a miracle!
If this had happened at work, I could have sat quietly for 20 minutes till the
sparkly lights ended and then gone right back to work.
So, I will definitely be filling this prescription today.
Posted by Karen at 7:35 AM No comments:
Friday, June 18, 2010
Ready, Set, Go
I am ready for my next migraine to strike. I am armed with Maxalt!
Yesterday, I decided it was crazy to wait almost a week to talk to Dr R about
these migraines, so I called my primary care physician. He was on vacation, but
I got an appointment with another provider that morning. In fact, I had 21
minutes to get there. I zoomed out of my office.
The appointment went well, and I ended up with two samples of Maxalt, plus a
prescription in case the samples work. The nurse practicioner was most
interested in determining whether these headaches were something new (requiring
a CT Scan). But they are old familiar migraines, just happening more often.
Now it is just a waiting game.
Do I see sparkles?
No, that is the sunlight dancing off the silver tag on Samantha's collar...
Posted by Karen at 8:03 AM 1 comment:
Thursday, June 17, 2010
At 2:00PM yesterday, my day was interrupted by another migraine. This time I did
not notice anything till the sparkly lights appeared. That is actually pretty
far advanced, probably about 20 minutes into it where there are blind spots and
a sensitivity to light. I guess I was so intent on my work that I just didn't
notice the blind spots.
Nothing to do but take an Immitrex and go home.
Next Wednesday, when I go for Doxorubicin dose #2, I am going to ask Dr R for a
prescription for the migraine drug that Tinalynne takes, Maxalt. It would be
great if I could find something that allows me to keep functioning, instead of
having to go home and go to bed.
And now for something compeltely different...
Today is the day my hair is scheduled to begin falling out (15 days after the
first Doxorubicin treatment). But I just tugged on a few strands and nothing
happened. (I know how silly that sounds.)
I will be very nervous when I shampoo my hair because last time it came out,
that is how it started, with handfuls of soapy hair in the shower.
Posted by Karen at 8:16 AM No comments:
Tuesday, June 15, 2010
Time for Walkies
My house is exactly one mile from the gate at the back entrance into my
neighborhood. So, if I walk to the gate and back, it is a two-mile walk with
some serious hills.
I love this walk. There are no turns, so I can't get lost. I get to examine my
neighbors yards, wave at the people driving by, and check out the prices on
houses for sale. All the dogs are locked up, so there is nothing to worry about.
On Friday night, Patsy and I walked this route after our big sushi dinner. We
saw a lot of fireflies in the bushes near the gate. I noticed that the door to a
pickup truck in a driveway has been left ajar, so I knocked on the front door. A
big strapping guy came to the front door and stood there looking at me through
the glass storm door. When I realized he was not going to open the storm door
(did he think I was a home invader?!) I said loudly that his truck door was open
and left without waiting for a response. As we walked away, we saw him run out
to the truck. Anyway, we hadn't told Lou and Omer what we were doing, and we had
been gone for an hour, so as we finally reached the front porch, they popped out
of the house with car keys. They were coming to look for us!
On Saturday morning, Lou and I walked a different two-mile route, to the
neighborhood pool and back. We watched a few minutes of a kids swim meet, which
On Monday night, Lou and I walked to the gate and back after a turkey dinner.
The temperature was finally starting to drop, and there was a nice breeze. Rain
seemed likely, but we got there and back in 45 minutes without a raindrop
falling on us.
It feels great to get out and walk.
Posted by Karen at 8:32 AM 2 comments:
Monday, June 14, 2010
I had a migraine late Saturday night, which actually wasn't all that bad because
I immediately took Immitrex and went to bed and fell asleep. On Sunday, all I
had was residual pain when I bent over.
But this morning, I felt great and rushed into work for a very cool class
starting at 9:00AM. I stopped in the ladies room before heading in to take my
seat -- and I saw sparkles. Another migraine! No. I was so disappointed because
it would have been awesome to take the class. Darn darn darn.
I had Immitrex in my pocketbook and took a pill with handfuls of water from the
sink in the bathroom. I stopped in the classroom to let the instructor know I
had to go home, and now I am home. The sparklles are gone, and the headache pain
I just wanted to quickly post before I crawl into bed and (I hope) fall asleep.
I remember that I had like six migraines the first time that I started chemo, in
2007. And I had a bunch of migraines last year. For while I even had a counter
"How Many Days Till Migraine?" on the blog in 2009.
Posted by Karen at 9:47 AM 2 comments:
Friday, June 11, 2010
The Worst Is Over
My bloodwork was all good, one week after the first dose of Doxorubicin.
Dr R called me late on Wednesday to let me know that all my numbers looked good.
In the next week, my white blood cell counts count plummet, though, so i am
supposed to watch out for any fevers. If I have a fever of 105 degrees, I am
supposed to immediately go to the ER. (Like, where else would I go with a raging
fever? Shopping? Rollerblading?)
Then he reiterated something that I thought he had said a month ago -- but that
I did not dare to hope was true. He said that the first dose was the worst and
that my body would sort of get used to the Doxorubicin so that none of the
remaining does would be as hard to deal with as this first one.
That is awesome news, especially after Gem/Tax, where every dose got
progressively harder to deal with.
Oooh, and it is FRIDAY today, so Weekend Happy Dance!
Posted by Karen at 8:03 AM 3 comments:
Tuesday, June 8, 2010
Tomorrow morning, I go to Duke to have my bloodwork checked and see Dr. R for a
checkup one week after the chemo started. My plan is to go alone, so that I can
go to work afterward.
This afternoon, Lou helped me compile a list of questions. It's not much of a
list: two questions and one unpleasant side effect.
What is amazing to me is that I can have something like this unpleasant side
effect, something that is bugging me minute to minute -- but when I get into the
examination room, I just forget all about it. "Completely fine," I'll say
blithely. "Nothing to report."
So a list is a huge help.
Patsy and Omer are a huge help too! We teased them today because they managed to
get through the entire day without stopping in at the grocery store for
something. (Every day I think things I must have, and they run out to get them.
It is better than being on a cruise... in a suite... with a butler.) Lou waited
till 9:00PM to point this out to them, so that it would be too late for them to
go to Harris Teeter.
Hey, I did not go in to the office today. My plan was to go in to the office.
Around 9:00AM, I got all dressed up and started driving to work, but felt lousy
all of a sudden and turned around before I even got out of the neighborhood. I
felt good enough to log in remotely and work from home and finally clean up some
pesky issues. I did not take a nap today. I was exhausted at 9:00PM when Patsy
and Omer went to bed, but once I went to bed, I woke right up. I am finally
feeling sleepy after checking email and surfing the web for an hour. I hope when
I crawl back under the covers, I fall right to sleep.
Posted by Karen at 11:50 PM No comments:
Wearing Flip Flops
For months I have been complaining about my swollen ankles and feet. Dr R says
it's a side effect from the Docetaxel that might last as long as a year from my
last dose (October '09). I have had to wear compression stockings and take a
diuretic and only wear my sneakers to keep the swelling under control. Sandals
and MaryJane shoes were completely out of the question because my feet would
swell where ever there was an open space that let them swell. Yuck.
But for the last few days, the swelling has been gone! Completely gone! I should
have taken a photo of my skinny feetsies.
I even wondered if "lack of edema" was a known side effect of Doxorubicin that
they had forgotten to mention in the handouts. But I didn't think about it a lot
because I did not want to jinx it.
My feet and ankles were so un-swollen that I have been wearing flips flops since
our lunch outing on Saturday. Flip flops! Not just any old lousy flip flops,
either. Pale pink flip flops with a "secret" compartment built into the sole,
just large enough to hide a credit card or a hotel key or a couple of folded
dollar bills. These are party flip flops. Spring Break flip flops!
Well, last night, I felt a familiar and unwelcome sort of tightness in my feet
and realized that there was a tiny bit of swelling. Grrrr.
Then it hit me. I spent so much time in bed in the last week, probably 20 out of
every 24 hours, that of course my ankles were not swelling. Being prone or
elevating your feet is an excellent way to stop swelling. But after one day of
working from home, a mere 7 hours of sitting at the table in front of my laptop,
the swelling was coming back. Darn. Party's over.
Let's not be drastic. Party's not over. But a couple of people have started to
look around for their coats and empty potluck dish, in preparation for saying
I am hoping I can use this new knowledge to keep the swelling under control.
Posted by Karen at 9:14 AM 2 comments:
Sunday, June 6, 2010
No Nausea While You're Asleep
What a weekend.
At some point late on Friday, I guess I had accumulated enough Compazine and
Zofran in my bloodstream to keep the nausea away for longer than an hour at a
time! Actually, it got to the point where I only had brief periods of nausea.
The trade off was that I was like completely comatose. I slept day and night,
for most of the weekend. I would wake up briefly, eat or drink something, and
then zonk out again.
Sleeping was a gift. Impossible to feel nauseated while asleep! Other than two
quick outings, I have been in my PJs and/or asleep continuously since my last
report on Friday morning.
The outings were lunch at a Mexican restaurant on Saturday (followed by a long
nap) and Costco shopping this morning (followed by a longer nap).
I have not taken anything for nausea since midday today. I even helped make
dinner tonight, which was a miracle, because for most of the weekend, when I was
awake, I just sat around like a zombie letting Lou, Patsy, and Omer wait on me.
I slept all afternoon, though. In a little while, I'll be going to bed, and I
expect to fall right to sleep.
I'm going to NOT set my alarm in the morning. I plan to sleep as late as I can
and then make the decision to either log in remotely or actually go into the
office. If I am still sleeping too much, it would be silly to drive in to the
So, thanks for the nice messages! It was a heck of a weekend, but I seem to have
made it through to the other side.
Posted by Karen at 9:17 PM 3 comments:
Friday, June 4, 2010
Oh what was I thinking, to turn down the Decadron that Dr R offered for the
first three days after chemo?
I sure won't turn it down for the next dose of Doxorubicin, And I told him on
the phone last night that I would never again complain about the sleeplessness
and speediness from Decadron. I would give anthying for a little sleeplessness
and speediness right now -- if I could only get rid of the nausea.
The nausea slapped me in the face yesterday at 5pm. I had wondered how it would
start, if it would start. I expected it to tiptoe in quietly and grow slowly.
But that is not what happened. One minute I was sitting there thinking maybe I
ought to log on to work and check email, and the next minute I was ready to
I immediately took a Compazine, and in a few minutes I was fine. But it didn't
last long. After about an hour, the nausea was back. I held it at bay with
ginger ale but realized I was fighting a losing battle, so I called Dr R. He
suggested that I start take the Zofran, too, along with the Compazine. And he
suggested taking them straight through for the next few days.
I can take a Compazine every 6 hours, and a Zofran every 8 hours. What I have
noticed so far is that each pill gives me like one hour of feeling okay, but
then there is nausea. But there has been no barfing, so that is a success.
I am in that okay hour right now which is how I can blog.
Posted by Karen at 9:24 AM 7 comments:
Thursday, June 3, 2010
Checking Email After Midnight
I ended up sleeping all afternoon Wednesday after chemo. I got up for homemade
chicken soup and some TV, but then I was back in bed just after 8:30PM. I had a
headache and was sleepy. I might have even been a tiny bit nauseated, but that
is practically impossible on the first day, so I just ignored it until I fell
Around 1:00AM, the steroids must have finally kicked in, because I woke up and
felt all jumpy and started worrying that maybe I had forgotten to tell my
manager that I was starting chemo on Wednesday. I had to get out of bed or run
the risk of waking up Lou with my fidgeting. So I came out to the dining room
where my laptop is, sent email to my manager, started checking email, and
decided to also update the blog.
I feel shaky and generally unwell. I am sneezing a lot, and I still have a
headache. That is not too bad.
During chemo yesterday, a nurse came over to ask, "Did I drop your Neulasta
shot?" Yes! I did not recognize her at first because she is no longer very
pregnant. (The baby is fine.) So I told her she was on my blog, and I gave this
blog address to her.
Posted by Karen at 2:37 AM No comments:
Wednesday, June 2, 2010
Big Dose of Doxorubicin
Got a nice big dose of doxorubicin today! 164 mg
For sarcoma, my nurse explained, the dose is like 75 mg per meter squared.
That's a big smack in the face for the sarcoma. Whack! The dose for sarcoma is
more intense than, say, the dose for a typical breast cancer, which might be
like 50 mg per meter squared. The "per meter squared" part is all about the
surface area of the patient (height and weight). So I really did get a big dose,
big for the sarcoma and big for my surface area :^)
The chemo was administered in five separate syringes, and my nurse sat with me,
injecting them one after the other through my beloved Power Port. It's a serious
chemo, a bad one if there is a spill or leak, so they do it carefully and watch
for trouble. It is not something you'd hang in a bag and walk away from.
Lou was in the treatment room and so now he knows my secret: that I have a lot
of laughs getting chemo. The nurses in the treatment room are the best, and the
mood is light. Sure, this is deadly serioous business, but come on, we can't sit
there and cry the whole time. Lou said he would like to come for my next dose,
too. What can I tell you, I have the best husband in the world.
I warned Lou not to tell anyone how much fun getting chemo is, or else I won't
be able to get any chemo pity from anybody.
I made a decision today that I sure hope I do not come to regret. I declined to
take a prescription of the Decadron, the steriod that stops inflammation and
nausea, because it makes me too speedy. If I end up barfing, I will regret this
decision -- and next time I will take the Decadron with no complaints about
sleeplessness and the inability to stop talking and snacking.
Dr. R said to NOT take the Compazine prophylactically [gasp] and so that is the
plan right now. I have a compazine in my pocket, ready for the first hint of
nausea. Almost no one gets nauseated on the first day, so it is sort of overkill
to have a pill in my pocket. I am hoping it's like having an umbrella: if you
have the umbrella with you, you won't need it. It only rains if you leave your
umbrella at home.
I think that I am going to curl up on the couch and either nap or read my new
book, Storm Prey, by John Sandford. I'll report if anything happens...
Posted by Karen at 2:29 PM 2 comments:
Tuesday, June 1, 2010
Let's Kill Some Cancer Tomorrow
Chemo starts tomorrow, and everyone is coming: Lou, Patsy, Omer, and me. I am
surprised Samantha hasn't asked if she can come, too, but maybe her plan is to
grab her leash and sit by the door tomorrow.
It will probably take all morning for the labwork, seeing Dr Reidel, and then
getting the chemo. We are thinking that we'll stop for a nice lunch somewhere on
the way home.
I am supposed to be able to drive myself to and from this chemo, but it seemed
like a good idea to have company for this first time with Doxorubicin.
My plan is to take compazine prophylactically afterward, so that no nausea
occurs. (I have not heard yet what Dr Reidel's plan is.) I am going to ask for a
prescription of Zophran, too, because I remember that drug being like the big
gun for stopping any nausea immediately.
Thanks to Valerie for reminding me about Zophran.
I haven't posted anything all weekend because I have been waiting for some kind
of insight into how I feel about tomorrow. (Plus, it has been a lot of fun
having Patsy and Omer here.) I have heard a lot from ladies who had Doxorubicin,
and so a lot of my fears are allayed. And I think I am in that place where I am
thinking, it won't be easy or fun, but there is a good chance we're gonna kill
some cancer. Nothing I like better than killing some cancer.
Tomorrow can't get here soon enough. Let's kill some cancer.
Posted by Karen at 8:05 AM 1 comment:
Friday, May 28, 2010
Lou, Omer, Patsy, and I sat out on the deck drinking coffee (and tea) and
listening to birds and watching golf course maintenance men at work for awhile
Then it was time for breakfast. Karen made Lou's breakfast, Patsy made Karen's
breakfast, Patsy made Patsy's breakfast, and Omer made Omer's breakfast. That's
a lot of cooks in the kitchen at one time, but it was fun.
Omer accidentally spilled the beans about real mayonaise being in the house, and
Lou scoffed that he already knew about it. There is no hiding anything from that
guy, even if you tuck the jar behind the pickles.
Lou and I are headed to work, and Patsy and Omer will entertain themselves
Last night, we went to Tripps for dinner. As we pulled into a parking spot, I
noticed our closest neighbor, Pat, standing outside the restaurant. Turns out
she was waiting for John, so we all had dinner together. It was great fun. We
talked a lot about our recent trip.
Posted by Karen at 8:07 AM 1 comment:
Thursday, May 27, 2010
100 Miles West of Asheville
My parents are coming!
Lou suggested that it might be a good idea to ask them to come here for the
first round of Doxorubicin chemo, which starts next Wednesday. I had to think
about it for awhile. Do I want to barf on my parents? But they loved the idea
and offered to drive here lickety split. After thinking about it, I realized
that having them here will make everything so much easier -- and if ya can't
barf on your parents, then who can ya barf on?
(Subsequent research has indicated that there might not be any barfing at all.)
Patsy and Omer left the Phoenix Arizona area on Monday morning and have driven
like maniacs to get here. We didn't expect them till Saturday, but it looks as
though they will arrive this evening, or sooner. We thought that they would take
their time, visit some landmarks, sleep late in some motels... but no.
This morning, they said they were 100 miles west of Asheville.
Just a minute ago, Patsy called to update their status: they are now in the same
time zone as I am.
•On Monday night, they slept in Santa Rosa, New Mexico.
•On Tuesday night, they slept in Van Buren, Arkansas.
•One Wednesday night, they slept in Harriman, Tennessee.
•Tonight, they will sleep in Raleigh, North Carolina!
The only sad news is that the ironing board had a bad hinge, and so they are not
bringing it to me. This morning I ironed a little and reassured my current
ironing board that she would not be supplanted by some newcomer.
Posted by Karen at 9:40 AM 3 comments:
During a staff meeting yesterday, I was overwhelmed with sleepiness and actually
briefly put my head down on the table. The more serious discussion had ended,
and we were sort of just chatting about current events and general complaints.
That part of the meeting is often the most interesting, so it was strange that I
could not focus. I assumed that it was jetlag and that I desperately needed some
When the meeting ended, I grabbed some lunch and went back to my office. I
checked my blood sugar before lunch (because I had decided to check it often for
a couple of days, to gather enough data with which to request going off the
Glyburide). It was 63. No wonder I was sleepy!
I immediately drank some orange juice and then re-checked my blood sugar in 15
minutes. It was 69. I ate lunch and kept an eye on it for the rest of the day.
It stayed low, never higher than 112 even after spagetti.
I guess I have all the data I need to stop taking the Glyburide. So this
morning, no 1/2 green tablet for me.
Woo Hoo! How many people become non-diabetic?! I feel very lucky.
Posted by Karen at 7:41 AM No comments:
Wednesday, May 26, 2010
Questions Need to be Asked
In one week, the new chemo starts. I think that I need to call Dr R and ask some
questions. But the questions are only half formed and swirling in my head. I
need to make a list and then call.
Mostly, I am interested to hear what we are going to do to keep the nausea and
barfing from occurring. Nurse Carolyn said, "There will be nausea and vomiting,"
but so many people I have talked to have told me otherwise.
I was also going to ask about Doxil (which someone mentioned in a comment)
instead of Doxorubicin, but after I surfed the web a little I am not going to
ask. There is an increase in some terrible hand and foot side effect, and I
already have a lot of foot trouble...
But most importantly, I have to pick up some Sudafed for Lou before I go to work
this morning. He is miserable.
Oh, and here's a big THANK YOU to Nancy for the amazing cookies from Kona. They
arrived last night when all our accumulated mail was delivered, and I must admit
that the box is somewhat depleted. They are awesome. It has made the transition
from the cruise to real life a little easier to take. There are a lot of cookies
on board a cruise ship, let me tell you.
Posted by Karen at 8:47 AM No comments:
Tuesday, May 25, 2010
Travel days are a drag. We got up at 4:45AM to get off the ship at 6:00AM for
our bus to the airport. I continued reading Laura Bush's memoirs but had to stop
when I realized we were at 9/11 and I could not handle reading about that on a
When we got to the airport, we were told that our flight to JFK was cancelled!
Mechanical problems, they said. We formed a massive line in front of the Delta
ticket desk and waited and waited... no one looked happy as they walked away
after being waited on. A lady next to us checked the internet and found that she
had already been re-booked onto a flight tomorrow. We thought for sure that is
what would happen to us, and we shrugged and resolved to suffer one more evening
of fun in Rome if that is what the universe wanted to do to us ;^)
But when we got to the desk, we were placed in a US Air flight to Charlotte
leaving just 30 minutes later than our original flight! Awesome. I did the happy
dance, told some people in line what we got, and then split for security.
It was a strange experience in the airport. We stood in line for an initial
security screening, stood in line for checking bags, stood in line for another
security screening, jumped on a bus to get to our gate, hung around for awhile,
presented our tickets to board the plane, went down a million steps, and then
gopt on another BUS for the ride out to the huge jet on the tarmac! There were
two stairways leading to the jet. There were nine seats in our row (2 5 2).
Anyway, the part I skipped is that we used up the rest of our Euros in the
airport for coffee and croissants at Food Land (super yum) and then bought water
to carry on to the plane. Luckily we also ran into Lela and Robert, whom we had
met on the ship but never exchanged email addresses with.
Oh, and I got a migraine between the coffee and running into Lela! Luckily I had
Immitrex right there in my carry on. I had a long period of sparkly lights and
moderate pain. I was worried that I would mis-read something and make us miss
our flight, but it worked out fine. Once we got on the plan, I slept for quite
awhile and then woke up feeling much better and even able to read. (This
morning, when I cough or sneeze, I have residual sharp headache pain, but that
is normal for me after a migraine.)
I like US Air. The flight attendants were awesome. I watched The Blind Side,
finally, and cried.
It is so good to be home. I am leaving soon for work, and Lou is out walking
Miss Samantha right now.
What a fabulous trip!
Posted by Karen at 8:01 AM 1 comment:
Friday, May 21, 2010
Almost every afternoon, Lou and I go the Cafe al Bacio on Deck 5. Lou gets
espresso, and I get a pot of tea. I usually bring my laptop and take the
opportunity to type up a description of what happened so far that day. Keeping a
log of the trip is the only way we remember everything that happened. It comes
in handy when we post pictures to www.rossranch.com too.
So here I am, blogifying in the coffee shop. Too bad I am not smiling.
I am having an excellent trip!
I have been trying not to think too much about chemo starting on June 2. I was
greatly relieved at all the information I got from various people. So then I put
it out of my mind for now.
Today I looked at scarves for my head but did not find anything to buy. There
were many lovely options, but nothing appealed to me as something I could wear
to work wrapped around my head. I am not looking forward to wearing a wig again.
I heard that I'll probably lose my hair 15 days after I start the Doxorubicin.
That's June 17.
Posted by Karen at 9:24 AM 2 comments:
Thursday, May 20, 2010
I am wearing Olay plush plum lipstick in the hopes that no one will call me
This morning our tour does not leave till 10:15AM, so Lou and I have been
enjoying a liesurely morning. First, we slept late, and then I ran down to the
coffee shop to take out frothy caffeinated beverages. We sat on the balcony
watching the island of Rhodes as we approached. Then the butler (!!!) delivered
breakfast, arranging a white tablecloth and fancy place settings for us on the
table on the balcony. (I am in heaven.)
We docked smoothly at the port and luckily we have a fabulous view of the Old
Town (the part of the town inside the ancient walls).
We have been sitting around, drinking coffee and tea and freshly squeezed orange
juice, and watching the taxi drivers clean their windshields, laugh, talk, and
wrestle as they wait for victims, er, tourists, to disembark.
Our tour today is a walking tour through the Old Town.
I am feeling great. My back was bothering me yesterday. Every time I got up, I
had to make an effort to stand up straight. But some Advil and a good night's
sleep solved that problem.
We have met a lot of people, and I have not mentioned that I am about to jump
back into chemo. Let them think I just have an unfortunate hairstyle.
Posted by Karen at 8:39 AM 1 comment:
Monday, May 17, 2010
A Little Light Reading
I realized today that I have not been itchy for days. It is funny, but true,
that it is difficult to notice the absence of something. I am not even sure when
the itchiness subsided.
I am feeling good. I have been sleeping really well; there is nothing like being
rocked to sleep on a ship. We have been waking up early and running around all
day like maniacs, and then I am ready for bed around 9:00pm.
I totally fell asleep on the bus today. Almost everyone fell asleep.
I am reading Laura Bush's memoir, Spoken From the Heart, and I am really
enjoying it. I am not that far into it. The first President Bush has just been
elected, and Laura and George have just moved to Washington. The memoir is full
of unexpected, touching stories. I keep getting really choked up and having to
stop reading. And I keep reading short passages aloud to Lou because I want to
There was one passage that really got me. I'm going to quote it here for you
because, well, you'll see why:
"Life's largest truth may be that everyone faces tragedy. Learning to accept
those tragedies, learning to accept that life is riddled with events large and
small, events that you may cause or that may happen to you, events that you can
never control, is perhaps the hardest lesson of all. In that wrenching fact, I
have faith that no one is ever alone."
Posted by Karen at 3:28 PM 3 comments:
Sunday, May 16, 2010
I am the yellow hat in the lower left corner of this photo. This is the Piazza
del Duomo in Taormina, Sicily, where we were supposed to meet up before
returning to our bus for the ride back to the ship.
We spent a wonderful 2+ hours wandering around Taormina.
Posted by Karen at 9:34 AM 2 comments:
Tuesday, May 11, 2010
Thumpa Thumpa Thumpa
The heart stress was not at all what I expected. I thought that I would be on a
treadmill huffing and puffing with electrodes and beeping, like Tim Allen in The
Instead, I had to undress and put on a couple of hospital gowns and endure a
couple of injections. The first injection was a substance that the nurse said
was like liquid tin that would prepare my red blood cells for the second
injection. Thirty minutes later, I got the second injection, which was a
radioactive substance that stuck to my red blood cells. Then the nurse quickly
popped me under some kind of xray camera thingie and took pictures for about 20
minutes. Afterward, I got to watch a black and white movie of my heart pumping
away in my chest.
My heart is strong, and I ought to be able to have the Doxorubicin. Of course, I
have to wait for official word from the doctor.
Posted by Karen at 9:23 PM 3 comments:
Duke Blue Devils Serve Up "The Red Devil"
On Sunday, Lou and I dropped by our neighbor's house to talk about how they will
entertain Miss Samantha while we are on vacation. They'll walk her and then hang
out and keep her company.
I took the opportunity to ask Pat if she knew anything about Doxorubicin (brand
name Adriamycin). I thought that maybe she had heard something, but it turns out
that she has actually had it!
Pat told me that people call it The Red Devil. (It is red, and it turns your pee
and tears red for a couple of days.) The wonderful news is that Pat told me that
she did not have nausea and vomiting while taking it. She took Compazine
prophylactically (as a preventive measure). That is, she took it on a schedule
to keep nausea from starting, instead of waiting till she was nauseated.
I plan to do the same.
You know, I was mystified why Nurse Carolyn would say, "there WILL be nausea and
vomiting," when we were talking about this chemo. There are so many anti-nausea
drugs, why would there be nausea and vomiting?
Knowledge is power, and I feel a lot better about the coming treatment. Of
course, my thrilling vacation is helping cheer me up too. I just asked Lou if he
was busy on Thursday, if maybe he'd like to go do something fun that day. Maybe
fly to Rome.
Posted by Karen at 7:45 AM 1 comment:
Monday, May 10, 2010
Yesterday I had all my vitamins, supplements, and prescriptions out on the
table, and I was filling up my pill containers for the trip. I had just picked
up a bunch of refills from the pharmacy that afternoon, too. I am bringing 14
days of drugs, althought the trip is actually 12 days, just in case we get stuck
For each vitamin or medicine, after I finished filling the pill container, I set
that bottle aside so I could see how many bottles were left to deal with. When
there was just one bottle left, I was sort of mystified because according to my
expectations, the pill containers were full and complete.
I looked at the remaining bottle. It was a prescription made out to me by Dr
Reidel. The name was prochlorperazine, generic of prochlorperazine maleate. I
had no clue what this drug was and why they had filled it for me. So I googled
prochlerperazine maleate and flipped out. It is an anti-psychotic drug for
schizophrenics who have severe symptoms! Yikes! How could this happen, that the
pharmacy gave me someone else's drug?! I worried about some poor schizoprenic
out there being told that there was no prescription waiting for her. What would
the voices in her head say about that?!
I called the pharmacy, but they had closed already. I told the clerk that the
pharmacy had made a huge mistake, and he said I needed to talk to the pharmacy
manager in the morning.
Lou talked me out of fishing through the trash can in the garage looking for the
pharmacy insert that must have come with the mystery bottle. I couldn't learn
anything from the insert that I would not learn in the morning when I called the
pharmacy. He was right.
I glanced at another web site that google found for me, and then the word
compazine jumed out at me. Compazine is one of the anti-nausea drugs I used to
have for chemo and which I will be using again for the new round of chemo.
Had Dr Reidel called in a new prescription for me without telling me? He had
asked me to bring my old bottle of pills with me on June 2 so he could make sure
that the old ones were not expired and so he could call in a new prescription..
I looked again at the mystery bottle, at the fill date. 6-28-2009. Oh God, I had
not even noticed the date. 2009 is last year. This was my old bottle of
compazine, which I had taken out of the drawer to that I would not remember to
bring it to my appointment. I always kept an elastic band around it, so it would
stand out from the other bottles and be easy to find if I ever felt nauseated.
But I had thrown away the grungy elastic band and put the bottle on the kitchen
table, where it had gotten mixed in with all my other bottles by accident.
The first thing I thought of was, Thank God the pharmacist had not been in. I
would have felt like such a dope to be telling him he made a huge mistake --
only to have him tell me I was the one making the mistake. That fill date just
did not register at all.
So I put the compazine away, with a new elastic band around it. I need a
Posted by Karen at 8:12 AM 2 comments:
Saturday, May 8, 2010
How Much Pressure Can I Take?
Yesterday, I picked up two pairs of new compression stockings from the Ashworth
drug store in Cary. My varicose vein socks just did not exert enough pressure to
keep my feet and ankles from swelling.
This morning, first thing I did was take a shower and then jump back into bed
and elevate my feet so that my ankles did not start swelling. Then I pulled on
the new socks. That was not as hard as I had expected, probably for two reasons:
I read the manual last night so I knew the recommended strategy, amd my ankles
were a lot smaller than when the lady measured me.
So far, so good. I am dressed and ready to leave the house. Lou and I are headed
out for breakfast, and then we will run a million errands to get ready for the
trip. Tomorrow, I do laundry and we pack.
The only other ankle news is that my fabulous primary care physician suggested
that I bring extra diuretic and potassium with me on the trip, so if I super
swell in the heat, I have a medical solution.
Posted by Karen at 7:59 AM No comments:
Friday, May 7, 2010
Am I Still Diabetic?
There is a chance that the diabetes will go away now that I am off the clinical
trial drug, presuming of course that (A) I was ever on the real clinical trial
drug and that (B) the diabetes was actually caused by the clinical trial drug
(and not by my love of pasta).
So I am checking my blood sugar faithfully, like 5 times per day. That's first
thing in the morning, and then both before and after both lunch and dinner.
On Wednesday and Thursday afternoons, I dropped to 98 (which is about 50 points
lower that the previous week). In general, the last couple of days, my numbers
have been much improved, but they are still not within the normal range.
I saw my fabulous primary care physician yesterday and he suggested that I
monitor my blood sugar closely. If the numbers are all in the double digits then
I should switch to one half pill per day. Then if the numbers remain in the
double digits, I can go off the pill entirely and see what happens. I was
looking for this strategy because I didn't want to be wondering what to do while
I am on the cruise, with no access to my doctor. (Although there is always a
medical center on board.)
It's funny but a lot of times things hit the fan on vacation. Sometimes those
things are difficult, like the ridiculous swelling of my ankles in January in
the Florida heat. Sometimes those things are good, like when we finally got an
offer on our house while we were anchored off the coast of Spain, and we had to
fax a 50 page signed offer back to our agent using the on-board satellite fax...
It would be wonderful to have the diabetes go away. (But it would be okay if it
does not go away, because it certainly helps one stick to a reasonable food
Posted by Karen at 9:14 AM 1 comment:
Wednesday, May 5, 2010
Wow, this morning I read all your comments and felt buoyed up. Thanks everyone
for cheering me on! Your comments have always been helpful, but this week they
helped more than ever. I was really bummed on Monday. Now I am reminding myself
to focus on the positive and keep fighting as hard as I can.
Starting on Monday night, Lou and I cancelled all my travel plans for the year,
which included trips to Tallahassee FL, San Antonio TX, Sun City West AZ, and a
cruise to Greece. They were all hard to cancel, especially the trip to my
parents' house and the trip with my old friend Kathy from Seattle.
But Lou is always thinking a few steps ahead, like life is a chess game, and he
suggested that we try to do something BEFORE the chemo starts on June 2. We have
just under a month, and I will be feeling wonderful. We could go anywhere, do
anything... as long as my boss agreed to let me go (which she did).
There is no denying that we love a cruise more than anything. It's so easy to
unpack once in what is essentially a luxury hotel, and then wake up every
morning in a fabulous new place because the hotel floated there overnight. Plus,
there is a chocolate on your pillow every night, and now that I am not longer
taking the clinical trial drug, I can have that chocolate!
We looked at Northern Europe and Greece, and Greece won. (I have been trying to
go on a Greek Isles cruise for years, but something always seems to get in the
way. I started thinking that the universe does not want me to go to Greece, but
this cruise fell into place so beautifully that the universe must want me
We leave next Thursda!! We fly to Rome, hop on a bus, and board the Celebrity
Cruises new ship, Celebrity Equinox. It's a 10 Night Eastern Mediterranean
Cruise, and here is the itinerary:
Rome (Civitavecchia), Italy
Sicily (Messina), Italy
Athens (Piraeus), Greece
Ephesus (Kusadasi), Turkey
Rome (Civitavecchia), Italy
Last night, we chose shore excursions. Oooh, we are going to have fun. The fact
that this cruise stopped in Naples was a big deciding factor because, ever since
we saw Pompeii, we have wanted to go back to see Herculaneum. (Pompeii was a
commercial town, and Herculaneum was a resort town. Plus Herculaneum is supposed
to be much better preserved.)
Anyway, the plan is to go and have loads of fun before the chemo starts.
And here is a diagram of our cabin:
Posted by Karen at 8:56 AM 12 comments:
Monday, May 3, 2010
Kicked Off the Clinical Trial
Today was Scan Day, and the news was not good.
I knew something was not right when Dr Reidel talked about this and that for a
few minutes without once mentioning my scan results. And the clinical trial
nurse was in the room, too, which is unusual. Maybe she was there to hug me. She
did end up cracking some pretty funny jokes later on.
The news: Two tumors in my lungs doubled in size, but they were very tiny to
start with! One went from 9mm to 18mm, and the other went from 2mm to 4mm. Plus,
the mass in my pancreas also grew by some unspecified but small amount. (The
tumor in my psoas muscle stayed the same; that is the one that is a charcoal
nugget still smoking from the radiation and chemo it has been bombarded with.)
It did not matter how small the growth was, however. Any growth at all meant
that the clinical trial drug is no longer working, and so I got booted out of
My eyes immediately filled with tears, and those tears started rolling down my
cheeks silently. I just ignored the waterworks as I asked questions and listened
to the news. Dr Reidel handed me a very small box of tissues, and I wiped out
almost the entire box.
I am getting four weeks to bounce back from the clinical trial drug and get
ready for more chemo.
The chemo will be Doxorubicin (brand name Adriamycin). There will be nausea and
vomiting. The chemo is red, so I will have freaky red tears and red pee for a
couple of days afterward.
Here are the good things that I am supposed to keep in mind:
•I don't have to deal with the clinical trial pills anymore. No more keeping
them in the fridge, no more making sure I consumed only water for two hours
before and after I took the pills.
•The tumors grew only a little bit.
•I do not have all that much cancer (there are nine tumors but they are very
•Doxorubicin works from about 60% of people.
•Doxorubicin is injected pretty quickly -- I won't have to sit around for 3+
hours getting this chemo.
Chemo starts on June 2.
I will probably feel wonderful for the next four weeks as the clinical trial
drug gets out of my system. I'm going to enjoy feeling wonderful.
Posted by Karen at 8:25 PM 10 comments:
Thursday, April 29, 2010
Is It Time Yet?
Yesterday we drove to Chimney Rock State Park. The elevator to the top of the
Chimney Rock was not functioning, so we walked up the stairs (315 feet height)
to the observation "deck." It was awesome! We did have to stop numerous times to
let me catch my breath, but that just meant more time to enjoy the scenery on
the way up. I was glad that the elevator was broken because otherwise we would
have missed all that fun.
The elevator was working when it was time to go down, which was nice.
Then we did the Hickory Nut Falls Trail (1.5 mile round trip). That was fun too,
very pretty. There was a huge group of teenagers from Florida swimming in the
water at the Falls.
Well, it was a great day, but at 9:00PM we were both completely exhausted and
ready to fall asleep. But I had to stay awake till 10:30PM to take my pills!
Argh! Lou set his cell phone alarm for me and fell asleep. I read for what
seemed like a million years, then I got up to check the time because I was
worried that his alarm maybe had not gone off. But it was only 10:08PM.
Twenty-two minutes to go... went back to reading The Full Cupboard of Life, an
Alexander McCall Smith book. When the alarm finally went off, I happily took the
pills and went right to sleep.
Posted by Karen at 9:43 AM
Monday, April 26, 2010
Do We Have Everything?
The plan was for us to leave the house at 10:00AM to head to Biltmore for our
After the car was all packed with luggage and cooler and books, Lou suggested we
sit for a minute and do a mental inventory. I ran through everything that I had
packed and felt pretty complete.
Then Lou suggested we give Samantha the bone leftover from Lou's 22 ounce
"cowboy" ribeye steak from Ruth's Chris Steakhouse, so I went into the fridge to
get the meaty bone. Lou lured Sam outside, leaving me standing in front of the
open fridge, fretting about whether I ought to throw away the leftover rice,
chicken, and beans in there. Then I glanced one shelf up and saw my stack of
clinical trial drug folders -- and realized with a start that I had not packed
my drugs for the week!
That would have been awful, to have gotten all the way to Biltmore only to have
to turn around and come home again. (I would have come home, too. I wouldn't
want to miss even one dose.)
So I threw a folder of drugs (each week's supply of pills comes in its own
folder) into the cooler. Soon after that, we hit the road for a lovely four-hour
We're listening to Dean Koontz's The Good Guy on Lou's MP3 player and really
enjoying it. This one is particuly funny (and scary). We laughed out loud a
bunch of times.
We got to the Inn on Biltmore Estate just after 3:00PM. Our high tea reservation
was for 3:30PM. Gosh I love high tea. Lou was a good sport and drank a freaky
strong tea blended with chilies and chocolate, followed by a couple of cocktails
;^) I stuck with a black tea, with hints of fruit. Everything was wonderful,
especially our waitress. The scones were cherry and chocolate.
Just when we were contemplating our last few pastries, the fire alarm went off
and we were gently herded outside. Luckily, we got a good spot under the portico
because it was drizzling and windy.
Aferward we walked down the hill to see the Antler Hill Village (winery, shops,
pub, farm). Here I am with the inn behind me.
Tomorrow we're supposed to have a thunderstorm and rain all day. We plan to tour
the Biltmore House tomorrow. We have an audio tour. We saw that there is also a
Behind the Scenes tour as well as a Rooftop tour! If it is raining, we'll save
the gardens for later in the week (Wednesday and Thursday are 'sposed to be
I am feeling great, not tired at all. My only complaint would be that my ankles
and feet are swollen, itchy, and numb all at the same time. How can they be both
itchy and numb?! It's just wrong.
Posted by Karen at 10:06 PM 3 comments:
Wednesday, April 21, 2010
Don't Drink That!
I got email yesterday from Ann-Marie (one of my clinical trial nurses) informing
me that I do NOT need to drink the oral contrast when I go for my next CT Scan!
That is great news, because it tastes like orange-flavored bathroom cleaner.
And you have to sit around for an hour afterward before they can scan you, so it
makes the day drag.
The funny thing is, Ann-Marie added, "If they try to make you drink it, just
refuse and have them call me." That's funny because I had to argue with them to
get them to give it to me last time. Nothing like having to argue for something
that you really really do not want.
Posted by Karen at 8:44 AM 1 comment:
Friday, April 16, 2010
Nothing To Worry About
Dr Reidel called me this morning. I was sort of horrified to hear his voice
because he sounded very serious and all I could think was that he had bad news
But he was calling to report that he already showed my MRI to the
musculoskeletal radiologist guys for a second review. They said that there is
nothing to worry about. The lesion on the ilium does not look like cancer. It
might be "red marrow." More importantly, that lesion can be seen in the
mid-October MRI, so it is not new.
So there is no reason to take me off the study drug! (Thank God.)
Gosh, there is a lot in that mid-October MRI that I never heard about. I was
wondering how there could be som much in the mid-October MRI that I never heard
about. But if I think back, I was in a lot of pain and really worried. So when
the report said that the tumor in the psoas shrank significantly and that there
was a bulging disc, I guess we were all so relieved that no one bothered to read
the rest of the report.
Here's what I am thinking: all these reports get posted to the Duke web site for
me to view, and I think that I should start reading them. After all, it's my
health we are talking about.
Posted by Karen at 10:13 AM 3 comments:
Thursday, April 15, 2010
Early Results versus Final Results
I'll tell ya, there is almost no traffic on highway 40 at 5:30AM. Lou and I
practically flew up to Durham for my 6:30AM checkin for the MRI. Jane (our GPS)
got us to the Lenox Baker Children's hospital with no trouble.
It was still dark, but I saw signs that said "MRI" and pointed off to the left.
We followed the signs to what turned out to be a stockade fence surrounding six
or seven of those big medical trailers that each houses its own MRI machine. We
headed over to the gate marked "MRI Registration" but it was locked! I peered
through the wooden slats and could see a walkway leading to another trailer in
the back. I had to assume that we were in the right place.
We stood around for 15 minutes. Right at 6:30AM, another car came into the
parking lot. It was a lady with the key to the gate. She let us in and let us
hang in the waiting room while she opened up the office.
It would have been nice if the Duke computer that told me to check in at 6:30AM
had mentioned that the office would not open till 6:30AM. Maybe I would not have
gone 80MPH if I knew we would have to stand around in the dark parking lot
listening to birds (which was actually quite pleasant).
The scan itself went really well. My scan guy was funny and personable. There
were a lost of scans, and then they gave me contrast through my fabulous Bard
Power Port, and then more scans followed. I am glad I am not claustrophobic
because I was squished in the MRI tube for awhile.
Lou and I drove over to the Duke Clinics and got coffee at the Seattle's Best in
the food court. There were Tim's Cascade potato chips for sale! We didn't buy
any. It was just so cool to see them. We have not seen them since we left
We saw Dr Reidel at about 9:30AM, and he had only the most preliminary of
results to give me. First, though, he wanted to hear why we had this scan, so I
told him about how Dr Morris was insistent that I get a scan to see why part of
my leg is numb.
The early results were that the tumor in the psoas looks exactly the same as it
did in mid-October. Yahoo!
The final results would probably not be available till Thursday, and Dr R has a
whopping 32 patients to see on Thursday, so I was not going to get the results
till Friday. That was cool with me. I felt bad for him, having to see 32 people
in one day (his usual is 20 to 22 max). He was really funny, saying that
everyone would be mad at him because he was going to be way behind schedule and
have little time to spend with each person.
Lou and I left feeling pretty good. I am totally okay with the idea that there
is some nerve damage from the radiation, because that is so much nicer than
hearing that the tumor grew or the bone started to fragment or something equally
I dropped Lou at home, and I went to the office.
Late in the afternoon, I was making good progress on a tricky problem at work
when my phone rang. It was Dr R calling with the final results. I took notes.
There is nothing horrendous, but it is not all good news.
•The tumor in the psoas is indeed the same size. That is great news.
•The psoas muscle on the left is much smaller. That is not so great news.
•Something (I think the shrunken psoas) has narrowed the exit of the nerve,
which probably means the nerve is being compressed, and which is probably
causing the numb area on my leg. That is okay news.
•I do not have one bulging disc -- I have three bulging discs. That's probably
causing my lower back discomfort.
•The lesion on L5 is the same size as it was in mid-October. Are you thinking,
"What lesion on L5?!" That is exactly what I was thinking. Apparently there is a
small lesion on L5 that was there in mid-October. I don't remember hearing about
it. Dr R did not remember hearing about it either. Darn, I guess my tumor count
is nine, not eight.
•There is a new 9 millimeter lesion on the right ilium bone (see illustration
below). The lesion is non-enhancing (did not glow from contrast like the tumor
in the psoas). No one knows what this thing is. Dr R is going to present it to a
group of musculoskeletal specialists at a conference on Tuesday and see what
they think. I might need a bone scan, which is no big deal. If it does not glow
on the bone scan, then we can ignore it.
I will be waiting to hear what the conference on Tuesday thinks.
And I think that I will try physical therapy again. It "failed" last time
because we were trying to make the numbness go way. I think our new goals will
be to beef up the psoas muscle and un-bulge the three discs.
Posted by Karen at 8:59 AM No comments:
Tuesday, April 13, 2010
Wicked Early Day Tomorrow
I got one of those automated phone calls from Duke where a computer talks to you
about your appointment. The computer wants me to check in for my MRI at 6:30AM.
Yikes. That is one early appointment!
Lou and I will probably leave the house at 5:30AM (or a little earlier) to give
ourselves time to get to Durham and find this place. It is a children's Hospital
about a mile away from the Duke Clinics, where I usually go. (Yesterday
afternoon I used mapquest and zoomed right close in the satelite photo.)
We're going to McDonalds for breakfast on the way. That is the one bright spot
in the plan.
Speaking of healthy eating ;^) I am thrilled to report that I continue to lose
weight. Being diabetic sure makes it easy to follow a food plan! Actually, it
would probably be very difficult and annoying if I did not have the fabulous
side effect of decreased appetite from the clinical trial drug. (It is so
wonderful to not think about food all day long. I think that Ariad needs to look
into re-purposing this drug for weightloss. Well, maybe not. I'm not sure that
anyone would be so in love with the drug if it weren't keeping their cancer from
Posted by Karen at 8:56 AM 2 comments:
Wednesday, April 7, 2010
Got the MRI Appointment Already
Duke is awesome!
When I logged on this morning to check email and blogify, I saw that I had email
from Duke with my MRI appointment. Plus, someone just phoned me to confirm.
The MRI is next Wednesday at 7:00AM. Then I see Dr Riedel at 9:30AM for the
I'm going to ask Lou to come with me.
There is nothing as difficult as having to WAIT for the results of a scan. (My
brain just goes into overdrive manufacturing various worst-case scenarios.) So I
love that Duke always schedules an appointment right after a scan to give me the
What's the MRI for? Looking for a reason for the numbness and pain in my left
leg. To quote Dr Morris, it might be tumor-related, or treatment-related
(radiation side effects), or totally unrelated.
I just hope that whatever it is, it does not result in me getting kicked off the
clinical trial. If you are a praying person, that might be a good thing to pray
Posted by Karen at 8:52 AM 7 comments:
Tuesday, April 6, 2010
We went to bed last last before the game ended. This morning Lou replayed the
final couple of minutes from the game. Duke wins! 2010
You won't see it on the news but Duke also won yesterday in a skirmish over my
MRI. I gave up waiting for UNC to call back to make my MRI appointment.
I called Caroline, one of my clinical trial nurses at Duke. I told her the
story. [The story is that in February, at a checkup with my radiation oncologist
at UNC, Dr M said if the numbness and pain in my left leg did not go away
quickly with PT then I needed to have an MRI to see what is going on. (For
example, there might be some nerve damage from the radiation.) PT did not work,
so I dilly-dallied and then finally called for the MRI at UNC -- but after a
week and a half, no one has called me back.]
Caroline called me back to say that Dr R agreed that an MRI was a good idea, and
someone is supposed to call me today to set up the MRI appointment and a
followup to discuss the results a week later.
I had a little bit of a meltdown yesterday evening worrying about this MRI and
whatever it is that is causing the pain and numbness. But I felt much better
this morning. It is better to know. Maybe something can be done.
Posted by Karen at 8:33 AM No comments:
Sunday, April 4, 2010
Lou and I just watched an action movie where the first few scenes are at
Santorini, Greece. It was absolutely beautiful -- until a small earthquake and
then guys with guns showed up...
Why am I telling you this? Lou and I just booked a cruise to the Greek Isles on
Princess for this September! And Santorini is one of our stops.
I have wanted to do the Greek Isles for years, but other vacations and then the
cancer got in the way. Nothings going to stop us now. [knock on wood]
September is just around the corner. We will just have celebrated our 18th
wedding anniversary, too, so it will be super special.
And just last night Doane offered to give me a beach cover up. Coincidence? I
Posted by Karen at 6:33 PM No comments:
Saturday, April 3, 2010
One of the questions the clinical trial nurse asks at every checkup is whether I
am itchy. I have been mildly itchy all along, but lately I have been super
It's my calves. I have been waking up at night with super itchy calves. I
scratch and it feels wonderful, but the itch is never satisfied because as soon
as I stop scratching, the itchiness returns.
Good thing my fingernails are ridiculously short (they are thin and chip and
peel very easily) because I could do some serious damage with the scratching.
This morning I gave up trying to sleep at 6:30AM (on a Saturday!) because of the
Then I remembered my friend Carol who suffers from itchiness and who uses ice
bags to make it stop. So I got some ice and settled into my LazyBoy and rubbed
the ice on my legs. It worked! The itchiness went away. (Right now my calves are
just a little itchy, not itchy enough to make me start scratching.
Lou and I had breakfast and walked Sam and are looking forward to maybe watching
Posted by Karen at 9:57 AM 4 comments:
Wednesday, March 31, 2010
No Soup For You!
Last night I walked into the house just as Lou was serving dinner: chicken
piccata, brown rice, and asparagus. The house smelled wonderful, and the food
tasted as good as it smelled. There is nothing so nice as coming home to dinner
on the table.
I estimated that I had two carbs for dinner (2/3 cup of rice). That meant that I
could have a Jello pudding cup for dessert. We both have our own sugar free, fat
free, Jello pudding cups. Mine are milk chocolate and Lou's are dark chocolate.
But before dessert, Lou suggested we take Miss Samantha for a walk because it
was such a beautiful evening. We did the usual loop and then we kept walking out
toward the gate to the neighborhood. It is exactly one mile from our house to
Sam did her business, and I bagged it -- and then Lou suggested that, instead of
taking it home, I ought to dump it in one of the dog trash stations that are
located around the neighborhood. The closest one was almost all the way to the
gate! Poor Sam was dragging all four feet, so I skipped ahead to the dog station
and then rejoined Sam and Lou. Now my feet were dragging too.
We turned around to go home. Time for pudding! But when I looked at my watch, I
saw that it was already 7:45PM. My food cut off time is 7:30PM, so I can take
the clinical trial pills at 9:30PM. Argh! No pudding for me!
We laughed about that all the way home.
Posted by Karen at 8:46 AM No comments:
Monday, March 29, 2010
Birthday Lunch With Pat and John
I chose German food (not sushi) for my birthday lunch on Saturday, and Lou
invited our closest neighbors Pat and John to come with us to the Bavarian
Brathaus of Cary (on Tryon Road). What a great restaurant! We had a wonderful
time. The food was excellent, and the conversation was even better.
Pat and John gave me a lovely cutting board made by a Native American artist,
Ken Smith. Pat took pictures, which came out really well even though it was a
little dark in the restaurant.
Our waiter somehow knew that it was my birthday and brought over a large musical
machine that required cranking -- but the machine emitted only a few forlorn
moans no matter how much he cranked and fiddled with the settings. Our waiter's
struggles and eventual defeat were probably more entertaining than the music
would have been.
Posted by Karen at 8:42 AM 3 comments:
Friday, March 26, 2010
Karen Turns 45 Tomorrow
Tomorrow is my birthday! I'll be 45.
I am happy to be turning 45 and just hope that I get to get older and older and
So far the plan is for a massage first thing on Saturday, and then lunch out
with my sweet husband. I still have not chosen between sushi and German food...
It is funny to be 45. Most of the time I feel as though I am 25, although there
have been some days this year when I felt like I was 85 ;^)
Posted by Karen at 8:01 AM 8 comments:
Thursday, March 25, 2010
Left a Message
Yesterday I finally called Dr Morris!
I talked to the receptionist, who took the message. Dr Morris's nurse was out
yesterday, so she'll get the message some time today. Then she'll talk to Dr
Morris. Then finally someone will phone me to make the MRI appointment.
I feel as though I have a little reprieve while messages are passed back and
Posted by Karen at 6:22 AM No comments:
Monday, March 22, 2010
Physical Therapy Did Not Solve the Problem
When I saw Dr Morris for my recent post-radiation checkup, I was having some
pain and numbness in my left leg, and some pain in my lower back. He was
concerned about it and suggested that we have an MRI to see what's going on. But
I was completely unconcerned because I had had similar pain at the end of 2009,
and that physical therapy took care of it very quickly. He said that if PT did
not take care of it this time, I should let him know because I ought to have an
I have been going to PT for a few weeks now. The pain is almost all gone, but
the numbness persists. Last week, I suggested to my physical therapist that
maybe this time PT was not working. She has been trying lots of things to get
the numb area to go away, to no avail. She agreed that I ought to call Dr Morris
That was on Thursday morning, and I still have not called yet.
I just hesitate to open what could be a can of worms. I keep thinking that
whatever he finds, there is not going to be any kind of pleasant solution. What
is the chance that a strict regimen of eating ice cream and watching movies is
going to be his recommendation? Nil!
But, I am not the doctor. So I guess I will call today.
Posted by Karen at 8:06 AM 3 comments:
Thursday, March 18, 2010
No More Metformin!
Today I talked to Kathleen, who is the nurse for my fabulous primary care
I gave her my recent blood sugar numbers and said I was still pretty nauseated
by the Metformin. I told her that my oncologist was not happy that my blood
sugar numbers had not improved.
A couple of hours later, she called back with the excellent news that I am to
STOP taking the Metformin and switch to Glyburide instead.
Yahoo, happy dance, no more nausea!
Posted by Karen at 2:31 PM 2 comments:
Update on the Clinical Trial Drug
Here is a news article about the clinical trial drug (called AP23573 or
ridaforolimus) that I might be getting:
And here is a "fact sheet" on ridaforolimus:
Posted by Karen at 2:24 PM No comments:
Wednesday, March 17, 2010
Ginger and MaryAnn
I've been complaining about Metformin-induced nausea for a couple of weeks now,
and it never occurred to me to use ginger.
When I got radiation last June, I was slightly nauseated and a few sips of
ginger ale helped enornmously. Ginger snaps were awesome. Anything with ginger
helped. Nancy mailed me ginger cookies; Frankie mailed me ginger bread; Karla
mailed me ginger tea. (Sorry if I forgot anyone.)
A couple of days ago, I noticed ginger ale in my fridge. It was sugary regular
ginger ale, which is not such a great idea with the diabetes. (The nurse said it
was better not to drink your carbohydrates.) But a few sips did wonders for me.
Right now, ginger snaps and ginger bread seem like such a waste of my
carbohydrate servings for the day. So this weekend I decided to try eating a
sprinkle of ground ginger, which is the "active ingredient" after all. And it
Yesterday I was at work, feeling pretty sick for hours, and my friend Carol
offered to go to the drug store to get me Dramamine. I countered with a trip to
the grocery store for ground ginger, and she agreed. So I got a ground ginger
delivery at work yesterday! And it did the trick.
Posted by Karen at 8:30 AM 1 comment:
Thursday, March 11, 2010
Preliminary Report: No Growth!
We're still waiting for the final report, but the preliminary report from my
scan today is that nothing grew. Yippee! It's been five months since chemo
ended, and nothing has grown.
It was a pretty long day. I am glad Lou was there.
Yesterday I talked to my clinical trial nurse to find out if I really needed
oral contrast. She said that I had to be ready to request the oral contrast (in
addition to the intravenous contrast) if the radiology department did not offer
it to me. My nurse explained that the people running the clinical trial required
oral contrast and that they had been dissatisfied with the January scan because
there was no oral contrast.
Well, I love Duke, but gosh, today the people in radiology were very dismissive
at first. When I said that I had been told that I needed oral contrast, more
than one person just said, "No you don't," and would not even listen to me.
Finally I planted myself in front of the nurse's desk and explained that the
clinical trial required the oral contrast. The nurse in charge launched into
what was clearly going to be a long lecture on why oral contrast is no longer
used at Duke. Grrrr. I said that I wasn't going to argue about it, that I had
been told very adamantly that I must have the oral contrast, and that if they
didn't agree they were going to have to work it out with my doctor.
Okay, so my voice got a little quivery and I relied again on chemo pity, but
after that they were very nice and eventually I got two big cups of some
disgusting stuff to drink. Nothing like having to argue and fight for something
that I knew was going to gross me out.
(My hair is almost grown back to the point where I won't get any more chemo
pity, but I think it is something that I can live without.)
Anyway, it was well worth the effort because the scan looks good, nothing has
grown, I get to stay on the clinical trial, and I won't even have to think about
oral contrast for another eight weeks!
Posted by Karen at 9:26 PM 5 comments:
Wednesday, March 10, 2010
Family Outing Tomorrow
Last night I told Lou that I am a little nervous about tomorrow's scan. I think
I am always nervous right before a scan, even though I am still confident that I
am getting the clinical trial drug, and confident that it is working.
He offered to come along for moral support. At first I said no, because it can
be such a drag to hang out there all day. I just bring a book and read. On a
scan day, I got for bloodwork, then a scan, and then a couple of HOURS later I
see the doctor with the results of the scan. (Don't get me wrong, I still love
Duke and the sarcoma specialty center, especially when I hear from people that
they have to wait a WEEK or more to get the results of their scans. Waiting is
I realized how much more fun it would be if Lou came along.
So, he'll be joining me tomorrow! I'm pretty excited. Plus, we are listening to
a Dean Koontz book (The Husband) in the car, and we'll be able to listen for
about an hour and a half (round trip).
Posted by Karen at 8:43 AM 4 comments:
Tuesday, March 9, 2010
Thursday is Scan Day
This Thursday I go to Duke for my second CT Scan after starting the clinical
trial for AP23573. Let's hope that everything stays the same size again.
About a month ago, someone from Duke called to ask whether I had been given oral
contrast before my last CT Scan. I had not. She said that I should have been and
suggested that if they don't give it to me this next time, I ask them about it.
I'm not sure how I feel about that. I don't like the idea that the CT Scan
people didn't do the right thing, and I'll be pretty weirded out if it happens
again. On the other hand, I cannot even remember the name of this nurse who
I think that I'll call my clinical trial nurse today and see what she thinks.
Posted by Karen at 8:14 AM No comments:
Monday, March 8, 2010
New Strategy Is Working
The new strategy of spreading out the two Meformin pills seems to be working. I
take one at breakfast and one at dinner, instead of two at lunchtime. I have
been a little nauseated for a short time every day. Nothing like last Friday,
when I was completely nauseated for hours.
But I have also been feeling lousy: tired, achy, and just not right. I'm
assuming that it's just part of getting used to the Metformin and maybe also
just the effects of high blood sugar. My primary care physician said that people
with high blood sugar often have pain in their abdomen.
My numbers still are not fantastic.
Poor Lou, having to put up with me.
I took a long nap yesterday afternoon and woke up feeling pretty good. This
morning I feel pretty good and am looking forward to going to work.
Two movies I tried to watch this week but quit after about ten minutes:
Posted by Karen at 8:38 AM 1 comment:
Saturday, March 6, 2010
Oh my God, I got through chemo twice and only had three days when I was
completely nauseated and ready to barf. But now after two days on Metformin, I
was so completely nauseated, I was sure I was going to barf on myself.
On Wednesday I increased the dose of Metformin from 500mg to 1000mg. On
Wednesday night, I was slightly nauseated but assumed that it was my chicken
dinner acting up. Thursday night when I went to bed, I was really nauseated, so
much so that it took forever to fall asleep. And then Friday morning, as I drove
to work, I was increasingly nauseated till I was sure that I would have to pull
over and barf by the side of the road.
I would have just turned around and gone home, but I had papers to deliver to
someone at work, and a lot of work to do to meet my looming deadlines.
It was awful. Once I got to my office, I decided that I could barf in my trash
can if I needed to. I remembered that the Metformin info sheet from the pharmacy
mentioned nausea as a possible side effect, so I surfed the web and found a
million hits on people being nauseated on Metformin. Fiver percent of people
prescribed Metformin (or another drug like it) actually stop taking it because
of the nausea. So I called my primary care physician's office.
If chemo didn't make me barf, then by God some diabetes medicine isn't going to
make me barf.
The nurse called back with a plan. Even though the pills I am taking are
extended release, I am going to try taking one at breakfast and one at dinner
for the next couple of days. If I am still sick on Sunday, then I can back it
down to one pill per day and call the doctor on Monday for new instructions.
So on Friday, I drank a lot of water but didn't eat much. Around 1:30 just
before the cafeteria closed, I got a hard boiled egg. Later in the afternoon,
the nausea went away. At 4:30 I ate some apple with some peanut butter. And then
I had a normal dinner. No more nausea on Friday.
And no nausea today. Good thing because we have big plans today. Lunch at some
restaurant in the American Tobacco District, a play at the DPAC, and then dinner
out with a bunch of neighbors to some steakhouse in Clayton.
Posted by Karen at 9:32 AM 1 comment:
Friday, March 5, 2010
Must Eat Carbs
On Tuesday I had an hour long, private assessment as part of my diabetes
management class. It was a real eye opener, especially about food.
The woman performing the assessment was an RN. I said that my number one goal
was to figure out what I am supposed to be eating. A nutritionist will talk
about that in detail during the day long class, but I needed some guidance now.
(The day long class will be on March 23.)
I am supposed to eat carbs at every meal! So my lunch on Monday, 4 oz meatloaf
with a cup of steamed broccoli and caulifour, was not good. Sure, there were
some bread crumbs in the meatloaf but that is the only carb in that meal.
I have been avoiding carbs for so long, it is funny to have someone tell me that
I must eat carbs at every meal, 9 servings per day. Portion size matters: one
serving of carbs is 15 g, which is 1/3 cup rice or a small orange or a slice of
It really helps that my appetite is decreased. A third of a cup of rice actually
looks reasonable to me.
There was a strange, unpleasant moment during my assessment. First I have to
tell you what an A1C is. It's a measurement of how high your blood sugar has
been over the last two months, based on the interesting fact that sugar
molecules stick to blood cells, and blood cells live for about 2 months.
So the nurse was telling me that I ought to aim for an A1C of 7 for now, but
once my cancer was cured, I should aim for an A1C of 6.
"My cancer won't be cured," I said.
She pointed her finger at my and said very emphatically, "YES IT WILL."
"No, it won't."
"YES IT WILL BE CURED."
I was sort of shocked that she was continuing to argue with me. It seemed as
though she thought if she could make me say that it would be cured, then by
golly it would be cured. I hate that. As if it were so easy, to just chant, "I
am cured, I am cured," and magically I am cured!
I realized that I had not made it clear that I had metastacized leiomyosarcoma,
eight tumors, in three different areas, and that although chemo had caused them
to shrink, none had disappeared. Back in June 2009, my doctors all made it clear
that they could not cure the cancer but that we had a very good shot at beating
it back and controlling it. (And they were right. We did beat it back, and we
are controlling it. Yahoo!)
So I sat back in my chair and said, "My doctors have made it clear that they
cannot cure the cancer. Of course I'm praying for a miracle," I raised my arms
up toward heaven.
"But what about the clinical trial?"
I had told her all about the clinical trial because it was what was making me
diabetic. "That won't cure anything. It's just to keep the tumors from starting
to grow again."
And that finally closed the topic.
After I left, I got kind of upset. I don't want to have to convince someone that
the cancer cannot be cured. I don't really want to think too much about how it
can't be cured. I just want to focus on TODAY. I feel pretty good today, I can
go to work today, and I can have fun with Lou today. All the tumors stayed the
same in the last scan, nothing's growing, and that is worth a happy dance.
Of course, I have done all the right things, updated the will, updated the
advanced directive stuff, reviewed my beneficiaries, and talked about important
things with Lou.
If I have two years left, then I want to have as much fun as I can. If I have
ten years left, then it would be a shame if I spent that whole ten years worried
about dying. Think of all the fabulous vacations I could have in ten years!
Might even get to Egypt some day to see the pyramids!
Posted by Karen at 9:00 AM 3 comments:
Tuesday, March 2, 2010
On Friday, Dr Morris reminded me that he wants to hear about any new symtoms
that affect my ability to walk and go to the bathroom. (Yikes.) All the nerves
that control those functions go through the area that we irradiated last June.
He explained that when new symptoms develop, the cause is one of the following
I laughed at Totally Unrelated. It was so unexpected.
The pain in my back and leg (from the tight psoas muscle and bulging disc) is
back, and I am certain that it is from those nights I jumped on the exercise
bike and frantically rode for like 5 miles to try to get my blood sugar down.
Back in December, my physical therapist warned me that I would have to slowly
work back up to a reasonable length of time on a cardio machine because
otherwise I might stress out that muscle. Too bad I did not remember her warning
till after the damage was done.
I had been in pain for about one week when I realized I had better go back to
Avante Physical Therapy for some intervention. On Saturday, I got a fantastic
medical massage, and yesterday I saw the physical therapist. The pain is already
greatly reduced. That is good news, because Dr Morris said if it did not respond
quickly to the PT then he would suggest an MRI to see if there is something new
He's a great doctor. He reminded me that because we can't cure this cancer, we
are focussed preserving and improving on my quality of life -- and me walking
around in pain is not such good quality of life.
I was a little bummed when I left because the whole appointment served to remind
me how serious radiation is, and that I could still develop problems from the
treatment, like bone fractures in that area. On my drive home, I called my
friend, Donna, and she cheered me up pretty quickly.
I'm still completely thrilled about having had CyberKnife. I feel really lucky
that I had access to pinpoint robotic radiation to seriously mess with that
tumor. If in the future there was another tumor that needed to get slapped with
radiation, I wouldn't hesitate to go back.
The best part of the appointment was when I got to relay the info that the tumor
had actually shrunk significantly according to the October 15, 2009 MRI.
Oh, and the first doctor I talked to (Dr Laura Somebody?) showed me some yoga
breathing that is easy to do and has been proven in studies to improve lung
function for people with mild asthma. Cool.
Posted by Karen at 9:03 AM No comments:
Thursday, February 25, 2010
When I saw my primary care physician about my high blood sugar, he asked if I
wanted to talk to a nutritionist, and I agreed that it was a good idea.
I want to understand what I should be eating (and not eating) for better control
of my blood sugar. Some things are obvious, like no more yummy yogurts with 27 g
of sugar! Plus, the diabetics in my life have offered a lot of good info, but I
want a plan and some handouts. I love handouts. I like looking for typos.
Plus, now that my appetite has decreased so significantly (which is the miracle
side effect of the clinical trial drug, let me tell you!), I am not that
interested in food and am very open to the idea of getting a food plan. I want
to make sure that I am getting all the nutrients that I need so I can stay
healthy and strong to fight the cancer, but I still want to keep losing weight.
So I called the nutritionist for an appointment, and she suggested that I go to
the adult diabetes management program at Wake Med Cary instead. It sounds great:
a one hour private assessment, a full day class, followup appointments, and a
support group if you like that kind of thing ;^) The program is run by a nurse
and a nutritionist. Before I can sign up, my primary care physician needs to
fill out a referral, so I am in a holding pattern right now.
Tomorrow afternoon I go see Dr Morris at UNC for my six-month followup after
CyberKnife radiation surgery. I am really looking forward to telling him about
how that tumor in my psoas muscle shrank significantly. I could not be happier
about CyberKnife and my experience with Dr Morris and his team.
I have to look back in this blog so I can tell him exactly how much it shrank.
It is so cool that this blog is a record of what has been happening, because I
would never remember it all. Even the really shocking stuff, the stuff I thought
that I would never forget, well I have forgotten most of it. Probably a good
Posted by Karen at 8:51 AM No comments:
Monday, February 22, 2010
Can I Blame Chemo Brain?
On Saturday Lou and I ran around doing lots of errands. It was fun. One of the
things we did was look at weightlifting equipment for home, since we are not
going to the YMCA any more.
Anyway, I was pretty tired mid afternoon, so we went home and I was crashed in
my Lazyboy when the phone rang. The caller ID said STARBUCKS, so I picked it up.
It was the manager of a Starbucks, calling to let me know that she had found my
pocketbook in the store a little while ago.
"You're probably frantic," she said, "wondering where it was and how you were
going to get it back!"
"Actually, I had no idea that it was missing!" I replied.
Really, I had no clue yet that it was missing. I thought that it was in the back
seat of the car. I might not have noticed for another few hours, if she had not
Oh how I wish I could blame this on chemo brain! But I think it is just me.
Anyway, I rushed back to Starbucks and retrieved my pocketbook. Everything was
still in it, thank God. The whole identity theft is such a mightmare.
Posted by Karen at 2:03 PM 1 comment:
Saturday, February 20, 2010
Should Not Have Changed My Diet
Darn it, maybe I wasn't listening when I got my instructions about testing my
blood sugar for a week! Yesterday Ann-Marie said that I should NOT have changed
my diet at all. That would have given them a better picture of my situation with
the high blood sugar.
But I did change my diet because those high numbers freaked me out and I kept
getting a headache that would not go away. What were the changes? Not too
drastic. No more yogurt with 27g of sugar in the afternoon! And I stayed away
from bread as much as I could. Stuff like that.
Anyway, it's clear I need to get the blood sugar under control, and Dr R asked
whether I wanted to see my primary care physician or have them find me someone
at Duke. I chose my fabulous primary care physician. I got an appointment to see
him on Monday morning.
One interesting side note: if he puts me on Metformin, there is some kind of
restriction at Duke regarding CT Scans and Metformin, like I would have to not
take the Metformin that day till after the scan.
I read through the clinical trial drug paperwork again and saw that 10% to 20%
of patients get the high blood sugar side efect. I always was at the top of my
Posted by Karen at 9:29 AM 1 comment:
Friday, February 19, 2010
Submitted My Report
Yesterday I emailed all my blood sugar numbers for the week to Ann-Marie, my
clinical trial nurse. She had asked me to chek my blood sugar three times per
day, and I did. Some days, I checked four times but I didn't send in the extra
I should have also phoned just in case she doesn't check her email often, but
the day got away from me.
I am hoping that they write me a prescription for some low dose diabetes drug,
if only to make this headache go away and stop me from drinking so much water
I saw at Rite Aid for about $20 I can get my own blood monitor in PINK. Nice.
When I hear something, I will post it.
Posted by Karen at 8:34 AM 3 comments:
Wednesday, February 17, 2010
Today at lunchtime, I am going to see Amelia for a Healing Touch (HT)
appointment. I have gotten out of a regular routine, and I am looking forward to
doing it like every other week. There are still enough weird side effects from
the clinical trial drug that I need it.
I always feel energized after HT. And there have been times when I got on the
table with pain, and that pain was gone when I got off the table.
A couple of weeks ago, I slipped in the rain and whacked my knee pretty good. I
limped around for awhile. Then I visited Amelia in her office to talk about a
project I am working on (actually to see if I could just copy a bunch of work
she had already done). During the meeting I had to keep pushing back from the
desk because I could not keep my knee bent without pain. At the end of the
meeting, she asked if I wanted her to try to help my knee. She held one hand
over my knee, and the other hand up in the air pointing away, and then the pain
went away. I practically skipped across campus back to my office.
I don't understand it, and I don't care.
Posted by Karen at 8:19 AM No comments:
Monday, February 15, 2010
Three Movies on Sunday
How can you tell that football season is over?
Lou and I watched three movies on Sunday!
•The Two Jakes
•John's Carpenter's The Thing
These are such old movies, I can't imagine that I need to warn you that the next
couple of paragraphs are going to give away details... So SPOILER ALERT.
I had forgotten that someone has cancer in The Two Jakes and chooses to blow
himself up by lighting a cigarette in a house that's filling up with explosive
fumes. I was thinking sitting there on the couch cuddled up with Lou, thinking,
"Well, everyone has to make that decision for themselves," as if in real life a
gas-filled-house opportunity ever rolls around right when you are dealing with a
very bad cancer prognosis.
John Carpenter's The Thing didn't have any cancer surprises. I've seen it a
million times. I love that movie. There is this scene when the head on an
alien-infested dead body rips itself free from the body, grows spider legs and
googly eye stalks, and starts to sneak away out the door. One of the guys says
something like, "You gotta to be F-ing kidding," and then another guy uses the
flame thrower on the escaping head. (I think that line sums up where I was at
last April and May.)
And here is the scene:
Posted by Karen at 8:46 AM 2 comments:
Sunday, February 14, 2010
The Magic of Exercise
Last night my blood sugar level was 299, yikes. Lou suggested that I go ride the
exercise bike for 30 minutes and then re-check my blood.
So I went up and read Pagan Babies by Elmore Leonard and rode for 3 miles in 30
minutes. The result: my blood sugar level dropped 29 points to 270.
Who knew that there could be such immediate gratification?
Posted by Karen at 9:40 AM 1 comment:
Saturday, February 13, 2010
Sweetheart, Sweetie, Sugar Pie
My appointment on Thursday with my oncologist went really well, although it
seemed to take forever, which meant that I had a lot of time to read my book and
linger over my hospital cafeteria lunch.
The one surprising and unpleasant bit of news was that my blood sugar level is
high. This is just another typical side effect from the clinical trial drug,
they hastened to explain. It does not mean I am now diabetic.
My blood sugar was at 250 about 4.5 hours after I had eaten anything. Yikes. My
breakfast that morning had been what I thought was a virtuous bowl of cereal. I
had mixed two oaty flaky fruity cereals together. The fruity part (cranberries
and diced figs) must have been what sent my blood sugar soaring. Plus all the
carbs from the flakes probably didn't help.
The high blood sugar explains my headache, too. The headache got worse after
So, for the next week, I will be checking my blood sugar three times per day,
recording the results, and then emailing all the data to my clinical trial nurse
Ouch, the finger prick hurts. It takes a lot of resolve to push the button on
the jabbing tool when I know that I am about to stab my finger. Yes I am a baby
:^) The monitor I am using requires very little blood, so I think I will try to
prick some other body part and see if it hurts less than my fingers.
My numbers have dropped now that the cereal is out of my system, but they are
still not great: 155 to 211.
That reminds me, I had better go chuck those two cereals into the trash. Too bad
I already threw out the boxes; it would have been interesting to check the
Posted by Karen at 11:16 AM 2 comments:
Thursday, February 11, 2010
Crunchy Cheesy Ouchies
Tinalynne and I bought snackies for the three hour drive to the cemetary.
Strawberry Twizzlers for her, Red Vines for me. How could two old best friends
be so diametrically opposed to what is virtually the same snack food? Well, they
aren't the same. They are completely different.
We also had a bag of Smartfood, which is white cheddar cheesy popcorn. Mrs
DeAngelo and I were in the back seat with no supervision, and we did our best to
polish off the medium sized bag of cheesy crunchy goodness.
But there was hell to pay later on for me. I had forgotten that if I eat too
much of something crunchy like Cheetos, the inside of my mouth gets irritated.
With the chemo and the clinical trial drug, the irritation becomes actual
booboos and they take forever to heal.
(Of course, if I have just one serving of crunchy goodness, no mouth booboos
Anyway, for five days I felt a piercing pain every time my inside cheek scrapes
against my back molars. Such scraping occurs every time I talk or smile or
swallow... But today the pain is gone. Still a little sore, but I do not want to
walk around with a mouthful of air to keep my cheek away from my teeth. Such is
the price for a cheese popcorn attack.
Posted by Karen at 8:40 AM 2 comments:
Wednesday, February 10, 2010
I wore my wig in Missoula for the viewing, the funeral, and the luncheon after
the funeral. (The rest of the time, I was bare headed or wore a baseball cap.)
My friends here told me I did not need to wear the wig, that I did not look
pathetic and chemofied. But I didn't want to be any kind of chemo-distraction or
cancer-reminder during those times.
Plus, there was a chance that I was delivering the eulogy during the funeral
mass. If Michael's baby sister Jennifer found that she could not go on, she had
the option to call me up to take over, but that not what happened at all.
Jennifer was perfect. She was composed yet clearly heartbroken and did a
wonderful job reading various memories of Michael that had been written.
I have a nice wig. It is very cute. It has three silicone sticky patches that
really hold it in place on my head. Plus, having peach fuzz also helped to hold
it in place, so it was actually a lot more comfortable than it used to be.
But Missoula is very dry. What I think happened is the dryness affected the
sticky patches. By "affected," I mean "rendered them totally non-sticky" so that
there was nothing to held the wig on my head during the luncheon. The elastic
that is built into the wig started to pull it up my head. It felt as though the
whole thing was about to go SPROINGG and fly up into the air like in a cartoon!
When I tried to pull it back down into place in the back, the whole thing
slipped backward because the sticky patch on my forehead was not sticking. I had
to scoot into the ladies room several times during the luncheon to get it back
in place. As I was walking to the bathroom, I was just hoping that it did not
look too freakish. There is nothing so wrong looking than a lopsided wig.
Well, as a result, I just could not deal with the wig. After the luncheon, we
assembled at the cars for the 3 hour drive to the cemetary, and I pulled off the
wig and stuffed it in a little plastic bag.
When we got to the cemetary, it was cold and snowing, so I put on my hood and
looked like one of the crowd.
And there was a heck of a crowd there at the cemetary in Columbia Falls, which
was where Michael grew up. Someone counted 67 people, plus the military
personnel who performed the 21 gun salute, Taps, and the moving presentation of
the American flag.
Falling snow muffles sound and gives such a fresh taste to the air. It was
beautiful and peaceful.
Posted by Karen at 8:51 AM 3 comments:
Tuesday, February 9, 2010
Home Sweet Home
I arrived home on Sunday, around 9:30PM, after a long but easy day of travel.
When I pulled into the garage, I bumped the car into the big Christmas tree box
like I always do and was flooded with happiness to be home.
Lou carried my suitcase in for me, and Sam gave me a warm sniffy welcome.
I can't write about the trip yet, except to say that I am really glad that I
went. I hope that I was a help.
I slept about ten hours on Sunday night, and eight hours last night, but I am
still exhausted. (I never got eight hours of sleep during the trip; there was
too much to do every day, and too much to talk about every night when Tinalynne
and I were finally alone.) I could go back to bed right now, but I can't,
because I need to go to work.
My suitcase is in my bedroom, with everything just dumped out on the floor
because late Sunday night I had to find my asthma medicine.
I started coughing again on Sunday. I was waiting for my final flight when a
woman sat down next to me, wearing some kind of horrific perfume that
immediately made it hard to breathe. I started coughing and choking and quickly
gathered up all my stuff and moved away from her. I had never had such a strong
reaction before. It would have been nice to know what she was wearing, but I
didn't dare go near enough to ask. I tried to keep an eye on her as we boarded;
I was ready to ask to have my seat changed if she was going to be near me. But
she was in first class. I saw her as soon as I boarded. So I just waited till
the aisle was clear enough that I could walk by her holding my breath.
Yesterday I was still coughing, and I was ready to call the asthma doctor, but I
have not coughed once this morning.
Posted by Karen at 9:01 AM No comments:
Wednesday, February 3, 2010
Just a Quick Visit
Lou usually makes all of our travel arrangements. I hardly ever have to do
anything except agree that, goodness, I would like to go on another cruise.
Tonight we found out why Lou books all our travel. It is because I cannot be
Here's what happened. I was busy folding and packing and actually doing my
famous last minute load of laundry, so my sweet husband offered to go check me
in for my flights. A couple of minutes later, he came back and stood there
quietly laughing at me. He had discovered that I had accidentally booked my
return flight home on Sunday March 7th instead of Sunday February 7th.
Can you imagine what would have happened early Sunday morning when the ticket
agent informed me that I was a month early for my flight?!
At first we thought we would have to pay $150 to have Delta change the
reservation, but the agent on the phone suggested that we cancel the reservation
for free and then just re-book it correctly this time. The good news is, there
were more flights to choose from, and my new return trip home will take just
over 9 hours (instead of 11 and a half).
The re-booking process went pretty well, except that booking almost identical
flights two days in a row apparently set u]off a fraud alert at Citibank, so the
Delta website made me use another card, and then I had to call Citibank and
convince them that I was the one booking all that travel.
It's been a long day; I don't know why I'm so wide awake. I'm almost all packed.
In the morning, I just need to stuff my ice pack, clinical trial drugs, regular
drugs, wig, books, snacks, and pocketbook into my carry-on and then drive to the
Ooooh, my longjohns arrived! I tried them on underneath my black suit, and they
are perfect and comfy. I hope they do the trick to keep me warm outside on
Friday. My suit is a really thin material, not suitable for winter in Montana.
Perhaps not suitable for spring in Montana either ;^)
Posted by Karen at 12:12 AM 2 comments:
Tuesday, February 2, 2010
Sometimes it is good to let practical considerations and silly issues distract
from the big picture. I was wondering what to pack for the trip, and so I just
checked the weather for Missoula:
Snow on Thursday, with temperatures from 38 (high) to 26 (low).
Clouds on Friday, with temperatures from 37 (high) to 29 (low).
I think I better pack a turtleneck and a sweater. I would have worn my hiking
boots to keep my feet warm, but last night I almost fell walking on ice in my
darned hiking boots.
Keep your fingers crossed that my new silk thermal undergarment arrives in time
from Lands End... yeah, I am talking about longjohns. This must be a new low.
Our friend Scott used to live in Missoula, and he told us one winter it got so
cold that trees exploded from the ice inside them.
Posted by Karen at 4:57 PM No comments:
Delta Flies to Missoula
Tinalynne called last night to let us know that the viewing will be Thursday and
the funeral will be Friday.
Lou immediately went online to book me some airline tickets to Missoula,
Montana. He spent two hours working out the itinerary on Travelocity, and then
the site bounced him out before he could make the purchase. Oooh, he was not a
happy camper. I so took over the driver's seat and we used the Delta airline
site to get the tickets.
In both directions, I'll be changing planes twice. The trip out will take 10
hours and 16 minutes, and the trip home will take 11 hours 35 minutes. I was
hunting around last night for some reading material.
I'll miss three days of work, which is less than ideal at this point in my
project, but it can't be helped. If deadlines weren't looming, I would have
stayed longer to help.
The bigger news is that Lou also told Tinalynne last night about my cancer
coming back, and she took it really well.
(We couldn't say anything before this. I didn't want her worrying about me.
Plus, she and Michael said a couple of times that they took hope from how well I
was doing. But chemo this summer meant I could not travel, and so Lou and I
could not go see Michael, which is something we really wanted to do. It meant so
much to us when our friends visited when I was sick.)
That's all I have time for! I have to get to work and do as much as I can before
I have to split tomorrow.
Posted by Karen at 9:00 AM 1 comment:
Monday, February 1, 2010
My Dear Friend Michael
I am up early again but today it is not the prednisone.
We got the call from Tinalynne around 4:30AM that her husband Michael had passed
away after his courageous battle with cancer.
Michael was just the most awesome guy.
You know I blather on and on here about all my tests and my feelings and my side
efffects and how many centimeters things are, because it gives me comfort to
share the news and for me it makes it so much easier to trudge this road because
I am always thinking, "Ooooh, I have to remember to put THAT in my blog!"
But Michael was a really private guy, so I won't tell you much here except that
he was someone you were really glad to be friends with, a veteran, active in his
church, devoted to his family, wicked ridiculously funny and fun to be with.
Never said a bad word about anyone.
In the grand tradition of the Old West, he went back East, found himself a
lovely bride, and brought her back to beautiful Montana which is truly God's
country. (That's how I met him, when my best friend from college fell in love
So if you have a moment, would you pray for Michael who is with God in Heaven,
and also for Tinalynne and the rest of the family?
Posted by Karen at 5:28 AM 2 comments:
Sunday, January 31, 2010
Please Stop Talking Now
Taking prednisone has been interesting. It has kept me awake every night and
made me energetic during the day. Lou has been reaping some benefits because I
have been eager to run down to the fridge in the garage to get him a can of
soda, or to run upstairs to put things away, or to do the dishes... none of
which activities I am usually thrilled to do.
I have four days left on this prescription, but the dose is getting pretty low.
For the next two days I take one pill twice a day, and then for two days I take
one pill once a day, and then I am done. (My asthma seems improved, but I will
have to check my peak flow later to get an accurate measurement. I still have
alittle cough though.)
Last night was a little strange. At about 7:00PM I just totally crashed and was
falling asleep on the couch. So I dragged myself off to bed at 8:30PM and slept
great with no cheminal intervention till 5:00AM this morning when I WOKE UP and
then accidentally woke up Sam and Lou, too, when I blundered off to the bathroom
in the dark.
So now we are all up! Not our usual Sunday morning routine. Lou usually gets up
at 7:00AM and has a couple of hours of peace and quiet alone with Sam before I
finally wake up and join the party.
I made myself a cuppa and pressed the button on Lou's beloved coffee maker. Then
Lou suggested we look at pay-per-view channels to see if we could fins a movie
to watch, but I guess I am just a little too energetic and loud this morning
because after I excitedly read out loud the descriptions of about eleven movies,
he asked me to please stop talking till he had a little more coffee in him ;^)
So, now I am blogging in my office, and he is watching an old Star Trek TNG
quietly by himself. (Have I mentioned lately how much I love my laptop? On
Friday I sat in my LazyBoy all day, with my swelling ankles elevated, and with
my laptop logged on to work. Heaven! WiFi gives me the freedom to go anywhere in
the house to work, but right now I am tucked away in my office where I wouldn't
be tempted to keep talking at the poor man.)
I think we are watching Pelham 123 (Netflix) and Whiteout (PPV) today. Plus I am
planning to iron and maybe log on to work to see if anyone answered any of the
questions that I emailed on Friday and Saturday. Another lovely day.
Has anyone seen District 9? We like alien movies but aren't sure if we want to
pay to see it.
Posted by Karen at 6:21 AM 1 comment:
Friday, January 29, 2010
Jumped from 350 to 390
Today is day three of taking Prednisone for my asthma. Five days to go. This
morning I took my first reduced dose. If you're not familiar with it, Prednisone
is soemthing that you start with a higher dose and gradually work your way down
I just checked my peak flow, and it has improved from 350 to 390! (425 is my
normal score.) Nice improvement.
Plus my coughing is virtually gone. Oh except when Bonnie, my neighbor at work,
IM'ed me that she couln't hear me coughing any more, and then she IM'd something
funny, which made me laugh -- and then I started coughing ;^)
The Prednisone is a steriod, but it didn't occur to me that it would affect me
like the Decadron did this summer. It wasn't till I was just lying there in bed
INEXPLICABLY WIDE AWAKE on Wednesday night I realized it might. Decadron kept me
up all night too; it also made me crazy chatty and turned my face red.
This week I have the insomnia and the red face, but I do not think I have been
crazy chatty. I'm sure that you will let me know if you disagree ;^) I have been
pretty energetic, however. Last night I stayed at work till almost 9:00PM, and
while I was compiling my project, I went to YouTube and played the Big Bang
Theory theme song and danced around my office. Good thing I have a door.
My plan today is to work from home. We're supposed to get snow tomorrow night.
I'll be on the phone from 9:00AM to 12:00PM listening to a training
presentation. Poor Lou won't be able to get any phone calls from work during
that time period. Nothing but peace and quiet for him, so he's heartbroken.
Hmmm, if I play music and dance around my home office, I hope it doesn't bother
him, hut his office is way at the other end of the house and up a flight of
Posted by Karen at 8:02 AM 1 comment:
Tuesday, January 26, 2010
68% Ain't Good
Oooh, it is worth it to go to an actual asthma doctor when your asthma is
I had my lung function tested, and I scored 68%, where 100% would be normal. Lou
pointed out that a 68 would get me a D if this were a real test.
I also did a peak flow (which is where you take in a big deep breath and then
blow out as hard as you can in one big puff). My score was 350 (my normal is
The only thing they did not do, which my old asthma doctor in Seattle always
did, was make me blow my nose in some Saran Wrap (instead of Kleenex) and then
look at the results under the microscope. That is one test I do not miss.
The doctor asked a million questions and then made three suggestions:
•that I stop using my nebulizer (because I do not feel that it is helping)
•that I take a short course of prednisone (because I have been coughing far too
•that I use a stronger dose of Advair for one month only
Tomorrow morning, I start the prednisone. I will probably start feeling a lot
better really quickly. I am really looking forward to not coughing. I would do
the happy dance but dancing makes me cough.
Posted by Karen at 9:55 PM 2 comments:
Lou Remembers Everything
Lou is so darned organized. Yesterday morning I asked, "Didn't I go to an
asthma/allergy type doctor about two years ago?" And within two minutes he had
the doctor's name, phone, and address. And I thought it was good that I even
remembered seeing an asthma doctor two years ago. So I called the office and got
an appointment for this afternoon. I am hoping that there is something we can do
to stop this cough.
As for the tender spot above my port, Dr R suggsted that, since it is getting
better, we just wait and see what happens. That was good news for me -- I didn't
really want to leave work and go to Duke. Too much work to do! But I knew that
it was important enough to report.
That's all the news for now.
Posted by Karen at 8:10 AM 1 comment:
Monday, January 25, 2010
Calling the Doctor Today
After all my talk yesterday about not being sick anymore, it is sort of funny to
report that today I need to call the doctor.
There is a red, tender spot above my Power Port, along the tube that goes from
the port to my jugular. It has been red and tender for two weeks, and it was
very uncomfortable on Friday and Saturday but much less so today. It is NOT warm
to the touch, which would indicate an infection. Anyway, I think that I had
better call and report this to my oncologist's nurse and see what she says. I
have never had any trouble with my port; I am really glad I got a port because
it made chemo much easier to deal with. Plus, I always think of it as my Borg*
There is also the matter of this cough that won't go away. I've seen my primary
care physician twice. Today I am going to try to get an appointment with an
actual asmtha doctor. My asthma is definitely acting up. But my friend Barbara
told me that she coughed for like 6 weeks too, and that was a virus. So maybe it
is a virus that has irritated my asthma.
I'll let ya know what happens.
* That is a Star Trek reference, not something you can buy at IKEA.
Posted by Karen at 8:23 AM No comments:
Sunday, January 24, 2010
Forget About It
Lou and I had some wonderful long talks while we were on vacation. One of the
things we talked about turned into a New Year's resolution for me: to change my
attitude so that I no longer think about myself as a sick person.
Okay, some of you are thinking, "But, Karen, you are such a sick person." Yes, I
know, but that is not what I mean.
Here is what I mean:
•When we start talking about a fabulous trip somewhere next spring to celebrate
my parents amazing 50th wedding anniversary and I secretly worry if I will be
okay to travel or if I will be on chemo again. What I need to do is just plan
the trip and assume that I will be fine. If I am not fine, we'll deal with it
then -- that is what cancellation policies are for. No reason to worry about it.
•I still have not started going back to the YMCA to work out. I know I should be
working out because I will feel a lot better, have more energy, and get rid of
this stiffness. Being sick gives me permission to be lazy! During chemo, when my
immune system was really compromised, it would not have been a good idea to go
to the YMCA and be amongst people and their germs. But I am not on chemo now. I
actually feel pretty good! I still have to get eight hours of sleep, and I am
struggling with swollen ankles every day, but those are minor problems.
I am not suggesting that I can completely forget about having cancer. I do have
doctor appointments. I am still practically bald. And five days a week, I still
have to take refridgerated clinical trial pills in the middle of a four-hour
block of time during which I consume only water. (Trust me, that does not happen
naturally.) But I am always happy when I take the pills. I still feel a little
thrill of luck and triumph because I am sure that these are the real drug, not
the sugar pill.
I just need to keep reminding myself how good I feel. And I need to drag myself
to the YMCA.
Posted by Karen at 10:24 AM 2 comments:
Sunday, January 17, 2010
Other pictures from the Cruise
The guy on the left is my fabulous wonderful husband. We are in Grenada, the
isle of spices.
Here we are on a cliff on St Thomas.
A very nice English lady took this picture for us. Then I was supposed to take
her picture with her husband, so she gave me her point-and-click type camera.
But I could not make it work! I aimed it, pressed the button, heard a click --
but no picture! We tried three times, no joy, and then it was time to get back
on the bus. At the next stop, she found someone else to take their picture ;^)
Posted by Karen at 11:50 AM No comments:
Pictures from New Year's Eve
This morning Lou and I went through the pictures from the cruise. He will
eventually publish all of them to our website http://www.rossranch.com/ with all
our other vacations.
I picked a couple of pictures to post here.
Lou and I wandered around the ship during the day on December 31, 2009, to see
the preparations being made for the various New Year's Eve parties. Once we saw
these balloons, we knew which party we were going to.
Here is the view looking up from Deck 5, where the dance floor is. This area is
called The Piazza. It is a big open area 3 decks high with lots of shiny brass
Here is a sideways view, from Deck 7.
Here we are at dinner on New Year's Eve, all dressed up. We ate in The Crown
Grill, which is a steakhouse on board the Ruby Princess. It was awesome and
Posted by Karen at 11:44 AM 1 comment:
Saturday, January 16, 2010
They All Died
Lou and I met a lot of people on the cruise. It is fun to sit down next to
someone and have a nice chat and find out where they are from and where they
have travelled to. Even when we end up sitting with people who are having a
miserable time, we still have a good time because we laugh about it later and
tell each other we are glad that we are having fun.
Well, there was one conversation that really upset me on the cruise. I had been
standing alone by the rail on the Promenade Deck late one afternoon, watching
the ship prepare to pull away from the dock on one of the islands. (Lou was
walking laps around the deck.) A little crowd of ladies wearing a lot of perfume
joined me at the rail, and I had to escape because the scents were irritating my
So I went and sat upwind of them, next to some guy. We were talking about
perfume and stinky candles and potpourri, when his wife joined us. The whole
time, I am coughing this dry little asthma cough. We were having a great time
till she asked about my health. Once I verified that my lovely hairstyle was the
result of chemo, she started to tell me stories about everyone she knew with
cancer. The problem was, everyone she talked about had died.
By this time, Lou had joined us, and I shot him this amused look like, can you
believe this lady?
But what got me was when she started talking about this woman she knew who had a
little dry cough that would not go away. (I am still coughing as we sit there.)
The woman eventually goes to the doctor and finds out that she has lung cancer
and is dead soon afterward.
I am trying to be polite, but now all I can think of is that my cough is not
asthma at all -- it is the cancer and soon I will be dead too. Her husband was
looking at her with this horror-struck expression, as though watching a train
wreck in slow motion. At this point, even she seemed to realize that her long
list of dead friends was probably not what I wanted to hear about.
So, I made a big show of looking at my watch and exclaimed that we had better
get moving if we wanted good seats for the comedian, and Lou and I took off. We
kept running into them for the rest of the cruise, but we always seemed to be
rushing off somewhere else, no time to chat.
Gosh, I had forgotten all about this until I heard that my CT Scan showed that
none of the tumors grew. Some little part of me had been secretly worried about
my persistent cough. Very happy to report that it is just asthma.
Posted by Karen at 11:10 AM 6 comments:
Thursday, January 14, 2010
I'll start by telling you that the CT Scan today showed no growth at all. All
eight tumors stayed the same! Yippee! So, not only am I positive that I am
getting the real clinical trial drug, now I am also positive that it is working.
This was a long day, though. I had labs at 10:00AM, CT Scan at 11:00AM, and then
an appointment with Dr R at 2:30PM. My plan had been to sneak out after the CT
Scan and go for sushi at the awesome place down the street where I had sushi
with Deborah... but a nurse convinced me to take a beeper and stay in the
building somewhere because she would try to get me in earlier than 2:30PM.
Well, that did not work.
The beeper never beeped. Around 4:30pm, Dr R's nurses found me stretched out on
a padded bench in the corridor outside of Clinic 1A, reading. We chatted about
my fabulous vacation as well as the three trips one nurse made as a high school
missionary doing construction work in Haiti, Egypt, and Peru. Eventually we got
down to business and I answered all their questions about how I have been
feeling and what drugs I am taking.
I saw the doc himself at just before 5:00PM -- and that was when I finally got
the good news about the CT Scan. I have to admit, however, that when the nurse
brought me a fresh supply of the clinical trial drug at 4:30PM, I stopped
worrying about my CT Scan results because I figured that they wouldn't be giving
me more of the drug if my results were bad. (They told me that if there is any
growth, I get kicked out of the study.)
I can understand why they were running so late today. Every waiting room was jam
packed with people. It was CRAZY today. With Martin Luther King Jr Day on
Monday, lots of doctors needed to see their Monday patients today.
Basically, I hung out at the hospital doing nothing from 12:15PM to 4:30PM. When
I say "doing nothing," what I mean is getting progressively more worried about
the results of the scan :^) I also ate lunch, wandered around the building, sat
outside in the sunshine till I got cold, finished reading Spare Change by Robert
Parke. and started reading The Pale Horse by Agatha Christie novel.
I picked up hot and sour soup for dinner on my way home.
One hour till I can take my pills and go to sleep!
Posted by Karen at 8:24 PM 6 comments:
Wednesday, January 13, 2010
Taking the clinical trial drugs at 10:00PM is so much more convenient that
taking them at 10:00AM. I don't have to drag them back and forth to work in an
insulated ice pack, which is nice. They can just stay in the fridge at home.
Perhaps more importantly, when I get to work, I can have a cup of coffee to
jumpstart my mental processes. When I was taking the pills at 10:00AM, I
couldn't have anything but water. Water doesn't jumpstart anything except maybe
a trip to the rest room.
Tomorrow I am having a CT Scan. We'll see how well the clinical trial drug is
I also got a letter from UNC asking me to come back for a followup after my
CyberKnife radiation surgery. I made an appointment to see Dr Morris at the end
of this month. I am looking forward to telling him about how the tumor in the
psoas shrank so significantly and then later how my psoas tightened up so that I
could not start up straight.
Posted by Karen at 9:00 AM
Sunday, January 10, 2010
Lavendar Epsom Salts
At least two people told me to soak my feet in epsom salts to help relieve the
swelling. I don't remember who suggested it first, but today my sister-in-law,
Lynda, suggested it while I was sitting in the parking lot outside of the Rite
Aid. Perfect timing; no opportunity for me to forget.
I bought lavendar-scented epsom salts and then came home and used them for a
long hot soak. What a difference it made! I had ankle bones again! I had slender
feet! Plus I smelled nice!
But it did not last.
Standing around barefoot ironing all afternoon clearly hastened the re-swelling
process. In retrospect, I wish I had pulled on some compression stockings after
the soak. But at least I have a new way to combat the swelling.
Tomorrow is Monday and my vacation is over. I'll be heading to work, I hope in
the vanpool. Toward that end, I'll be going to bed soon so I can wake up at
At this point, my plan is to go bare-headed to work. I have salt and pepper
peach fuzz, still pathetically short but at least with no more freaky shiny bald
patches. (I just can't deal with the wig any more.)
Posted by Karen at 8:48 PM 4 comments:
Friday, January 8, 2010
It's 10:20AM on Friday, the last day of our cruise, which is bittersweet because
I hate for the trip to end yet I really want to go home.
I am in the Explorer's Lounge with Lou, who is listening to a lecture about
navigation at sea. We are in the front row. I have my laptop in my lap, my feet
elevated on the couch, and I am clearly not paying attention to the speaker. I
hope that is not too rude! There are a lot of people here, mostly men, and they
seem to be hanging on every word and every slide.
The paperwork for the clinical trial drug listed a lot of possible side effects.
One possible side effect is a decrease in appetite. I'm definitely experiencing
this side effect.
It is pretty weird, not being hungry. I've spent my whole life being hungry and
interested in my next meal ;^) so in a way this makes the clinical trial drug
even more of a miracle drug.
But now I am just not hungry. Early this morning, I ran down to the coffee bar
to get lattes and pastries. But when I got there, I realized that I was not at
all interested, so I got a latte and a chocolate croissant for Lou and nothing
for me. In what universe does that happen?!
What is really funny is that the paperwork for the clinical trial drug indicated
that there is not a resulting decrease in weight -- I guess because it is pretty
easy to eat even when you are not hungry.
Perhaps this is just the universe trying to make up for the fact that the
steroids I had during chemo INCREASED my appetite so that I gained weight during
chemo, which seems so wrong.
Posted by Karen at 9:36 AM 1 comment:
Thursday, January 7, 2010
One Week Till Scan
One week from today, I go for my first CT Scan after starting the clinical
trial. It will be two and a half months since chemo ended, and two months since
the clinical trial started.
I am sitting here trying to determine how I feel. I don't feel nervous (which
surprises me). I just feel really interested to see what the results are. Of
course I am hoping that the results are good: no new tumors; no growth of
existing tumors. But I am not anxious. Maybe it's impossible to feel anxious
about anything after 12 days of wonderful vacation fun.
Lou and I just walked a mile on the Promenade Deck. We got lapped by some
rickety old folk, but that is okay.
We are headed up to Skywalkers Lounge to sit in comfy chairs and read and rest.
This afternoon, we have an amazing 3 hour "Ultimate Ship Tour." We're finally
going to see the bridge! Plus a whole lot of behind the scenes, crew only areas
that are normally completely off limits to passengers.
We saw this tour on a flyer on the first day. It costs big bucks, and you had to
put your name on a list and just HOPE that you got picked. (Lou thinks that they
did a background check.)
We got picked!
This will be something to remember for sure.
Posted by Karen at 10:33 AM 2 comments:
Wednesday, January 6, 2010
Sir! This is the ladies locker room!
This has been a great day. We are in Aruba but we chose to stay on board today
to relax by the pool. Then I had a massage, and soon I will run off for a
facial. Such luxury and pampering!
Somthing funny happened in the ladies locker room after my massage.
I was at a locker, swathed in a huge terry cloth robe, no hat on, fiddling with
the key trying to open the locker. A woman at the door called to me, "Sir, this
is the ladies locker room!"
So I said, "That's okay, I'm a lady."
The poor woman apologized and said she was embarassed. I told her not to worry
about it because it's an easy mistake to make. This is not the first time it
happened. I guess with just a glance, the lack of hair leads you to think I'm a
guy. I must need bigger earrings and maybe a touch of lipstick!
Anyway, the peach fuzz has pretty much filled in everywhere on my scalp, and I
no longer have any shiny bald patches. But it is very short and a mix of black
and white, so it is very hard to see (especially the white). It is sort of fun
to pet though ;^)
I have been getting pretty comfortable walking around the pool without a hat.
I promised myself that I would not have to wear the wig to work anymore once my
vacation was over. I am not sure how I will feel on Jan 11 when I go back to
work -- I can't say yet whether I'll be a redhead or a salt-and-pepper head.
Posted by Karen at 3:38 PM 1 comment:
Tuesday, January 5, 2010
Ultimate Fashion Faux Pas
Today I am wearing a pink polo shirt, pink Boston Red Sox cap, white Bermuda
shorts, white sneakers, and flesh-colored compression stockings. Yes,
compression stockings with shorts, this is what I have chosen to wear today.
It looks awful.
But I have to wear the stockings, and it is going to be pretty darned hot today,
so I have to wear the shorts.
Maybe people will be so busy looking at my obvious semi-baldness that they won't
notice the stockings ;^)
These stockings are flesh colored, but they have a band of white silicon dots
along the top which looks terrible but miraculously keeps the stockings in
place. (There is something super awful about compression stockings that fall
down and have to be constantly pulled back up.)
Anyway, I plan to enjoy the sunshine and sights on Bonaire.
Posted by Karen at 9:06 AM 4 comments:
Monday, January 4, 2010
Two Year Old Neighbor
We have a two year old in the next cabin who is crying his heart out. He's on
the balcony, poor little guy. (I am not saying that Mom and Dad have locked him
out there alone! I am sure someone is out there with him.)
Lou is on our balcony listening to a book on his MP3 player, smoking a cigar,
and drinking a margarita. I cannot tell if he can hear the sobbing. I can hear
it, and I am inside the cabin with the sliding glass doors closed. Uh oh, now I
hear the stamping of little feet! Maybe someone needs a nap.
I have always wondered about kids who go on cruises. When they grow up, do they
rebel against luxury and go camping instead?
I was trying to take a nap but couldn't. I guess the latte I had after lunch
kicked in finally.
Tonight there is a White Hot Party on deck starting at 10:15PM. You're supposed
to wear white. I have plenty of white; so does Lou. So we plan to go dance the
night away on deck. (which is why I was trying to take a nap, so I could stay up
My cough has come back, so I am using my inhaler again which helps. My ankles
are still swollen; right now I have my feet elevated while I type with my laptop
in my lap. (I love this laptop.) I think that I might even resort to wearing my
compression stockings with shorts [gasp] which looks terrible but would help a
lot to control the swelling. Today I just couldn't do it, so I wore a skirt
instead to try to camoflage the compression stockings.
Today is the day that most of my coworkers went back to work. I thought about
work for awhile today. There's a lot for me to do when I get back, but I do not
feel as panicked about work as I did before this vacation. I think that the
break has done me good.
Posted by Karen at 3:10 PM 1 comment:
Friday, January 1, 2010
There is no sushi restaurant on the Ruby Princess. Instead, there is a wine bar
called Vines where you choose a glass of wine, and the staff give you either a
bit of cheese or a bit of sushi to enhance your wine-drinking experience. I am
not a wine drinker; therefore no sushi for me.
But I am having such a great time, I do not even care.
New Year's Eve in particular was just perfect. Lou and I got all dressed up,
went out to the Crown Grill for a special dinner to celebrate Lou's birthday,
and then saw a wacky comedy show with Adam Ace. By then it was 11:15PM and time
to go to one of the three parties on board. We chose the party in The Piazza
(which is a beautiful three story atrium mid ship) because there would be a
balloon drop, and I had never been in a balloon drop before.
When we got to The Piazza, the place was very crowded. There is a small dance
floor, and I started to walk away to find a good spot along the railing from
which we would have a good view of the action. But then I was overwhelmed with
the certainty that I did not want to watch the action -- I wanted to be in the
middle of the action. Plus, the balloons were suspended over the dance floor.
With everything that has happened this year, I want to enjoy myself as much as
possible today because there are no guarantees for tomorrow. I just couldn't
stand the idea of my shyness keeping me from having fun.
So, I grabbed Lou's hand and we slipped into the slow-moving stream of people
making their way onto the dance floor. Luckily, Lou is The Best Husband in the
World and always game for whatever happens. Boy it was crowded. Then I saw a big
open space, right in front of the band. We squeezed our way over there and
The music was great, and everyone was having fun. I was laughing and dancing and
bumping into people and having them bump into me. Then the band started playing
"I Will Survive" and I got completely and unexpectedly choked up. Lou knew and
hugged me tight.
As midnight approached, I looked up at three floors of people all crowded
against the railings looking down at the band and dance floor, and I was filled
with joy that I was dancing and not watching. Not that we were really dancing!
There wasn't enough room to do more than wiggle or bounce in place.
Suddenly everyone was counting down to midnight, and then Lou grabbed me for a
big romantic kiss and the balloons floated down on top of us. It was magical. We
batted the balloons back into the air, and we stomped on some of them. I grabbed
a perfect pale pink balloon and held on to it for a long time, planning to bring
it back to the cabin and have Lou take a picture of me with it and post it to
this blog so you could see my sparkly black gown, but a tiny little girl on the
end of the dance floor stared so hungrily at my balloon that I had to give it to
her. It was my first good deed for 2010
Happy New Year!
Posted by Karen at 8:49 PM