Monday, December 28, 2009
My sweet Christmas laptop broke!
The mouse pad just stopped working this morning while Lou was fooling around
adding an account for himself on my machine. Lou tried everything he could
think of to get the mouse working. It is really hard in Windows 7 to use
keyboard shortcuts, I'll tell ya. Old Windows standby key combinations just
do not work, grrrr.
Anyway, we eventually broke down and called Tech Support for an outrageous
$3 per minute... and $45 later, the technician gave up and agreed that it
must be a mouse pad hardware failure.
We bought the laptop at Costco so we called the closest Costco to our
hotel... They were fabulous! If we had the box, they would have let us
return it for a full refund even though we bought it in North Carolina and
even though we did not have the receipt! But we did not bring the box on
vacation with us.
So, my economical idea was to run out and purchase a mouse. I was sure that
if we plugged in a normal mouse, I could use the laptop just fine during
vacation and then deal with replacing it when we got home.
But Lou thinks big.
His idea was to run out to Best Buy and get me another new laptop. We would
ship the broken laptop home (in the new laptop box) and then return it to
Costco after our vacation. Awesome! Fabulous!
We went to the Best Buy where Brian works and got to say hello to him. It
took awhile, but we finally found a laptop that I just completely fell in
love with. (It's a Sony Vaio.) Lou bent over and grabbed the laptop box from
under the display and ALL THE LIGHTS WENT OUT! The entire store went dark.
The laptops around us continued to twinkle away on battery power though.
The employees started herding us all to the front, and then the lights came
back on. Whew! So we decided to go look at camera batteries and talk to
someone about the return policy and then I had to visit the ladies room and
then ALL THE LIGHTS WENT OUT AGAIN! Ooooh, it was totally pitch dark in that
So the lights started going on and off. We got in line, hoping that the
lights would stay on long enuff for us to check out. But it was not to be.
Eventually they announced that the lights would be off for a couple of
hours, and everyone in line had to turn in their as yet unmade purchases and
leave. We had been laughing and joking around. We're on vacation, so who
cares if we're in the dark at Best Buy.
We decided to go to another Best Buy. When we got there, we found the laptop
that I fell in love with, and it was sitting right next to a delicate pale
pink laptop. "Oh yes," said the salesman, "that one is exactly the same
model, except for the color."
Clearly my borrowed guardian angels were the ones who knocked out the
electricity to that first Best Buy! I was meant to get the pink one.
And so you must have guessed, I am sitting here in my PJs in our hotel room,
typing away on my awesome pink Sony Vaio while Lou watches Monday Night
Football and drinks beer, which he certainly deserves because he is, as I
have often said, the best husband in the world.
Oh yeah, and tomorrow is his birthday!
Posted by Karen at 10:06 PM 8 comments:
Sunday, December 27, 2009
Who's Buried in Grant's Tomb?
Our vacation started when the limo guy came to pick us up. I was romping
with Samantha on the front lawn, killing time, because we were totally ready
to leave, with all our luggage (7 bags) lined up on the floor of the garage.
The limo guy did NOT make us listen to classical music, which was a relief.
We ran into no traffic and got to the airport lickety split. Curbside
checkin took four bags off our hands, and we headed in to security where
there was no one in line at all.
At this point, I am a little worried about my clinical trial drugs in the
insulated bag with both an ice pack and a bag of ice cubes (in case they
make me throw away the ice pack). So I say to the xray screener guy, "I have
an ice pack in my suitcase."
He asks me, "What's in it?"
This question confuses me. What is in my ice pack? What does he think is in
my ice pack? So I say rather emphatically, "Ice."
His expression does not change at all -- he just repeats his question, and I
realize what he really wants to know is what I am using the ice pack for. So
I say, "Drugs," and then realize almost immediately that this is almost as
bad an answer as "Ice." So I clarify that it is chemotherapy and he nods and
waves me through.
Posted by Karen at 9:46 PM 2 comments:
Saturday, December 26, 2009
Cold Hard Cash
I was nervous that I will forget my clinical trial drugs, so Lou suggested I
put his wallet in the fridge on top of the drugs. He won't forget his
wallet, ergo we won't forget my drugs.
On a usual weekday, I put my car keys in the fridge with the drugs -- I
cannot drive myself to work without my car keys. (That wouldn't work today
because we are not bringing my keys with us on the trip.)
Only one thing left to be packed: my wig. I washed my hair and it wasn't
quite dry enough to be packed away last night.
I am so excited about this trip. Going to have a lot of fun. I am pretty
sure that I will be able to log on during the cruise and update this blog.
If not, then I'll say HAPPY NEW YEAR now.
Posted by Karen at 8:32 AM 5 comments:
Thursday, December 24, 2009
Teeny Tiny Eyelashes
I have been watching my scalp pretty closely, waiting for my hair to be long
enough to stop wearing my wig. I was so obsessed with my scalp that I forgot
to check my eye area for signs of improvement. Till today.
I am thrilled to report that I have loads of little eyebrow hairs, but more
importantly, I have teeny tiny little baby eyelashes coming in!
They are pretty invisible at this point but they exist and they bode well
for the future.
Posted by Karen at 3:01 PM 2 comments:
Wednesday, December 23, 2009
After Dinner Mints
Yesterday I talked to my clinical trial nurse about how to take my pills on
When I told her Lou's first plan, which involved waking up every day at
6:00AM for a quick breakfast and then taking the pills at 8:00AM, she said
that she thought that idea stunk. "You don't want to have to wake up at
6:00AM every day on your vacation."
She loved the idea of taking the pills two hours after dinner. (That was
Lou's second plan.)
She explained that it is okay to switch from 10:00AM to 10:00PM -- as long
as I do the entire two weeks at 10:00PM. It would not be good to do 10:00AM
one day and then 10:00PM the next day because I would not have an even
amount of the drug in my bloodstream.
So, my clinical trial drug will be my after dinner mints!
While she had me on the phone, the nurse clarified that I am not supposed to
have anything but water for two hours BEFORE and AFTER I take the pills.
Yikes. I often drink coffee like an hour after the pills.
Lou pointed out that I won't be able to eat the chocolate that the steward
will leave on my pillow every night. I'll just have to save them for the
morning -- or stay up really really late every night!
Posted by Karen at 10:10 PM 3 comments:
Saturday, December 19, 2009
Lou asked me if I had given any thought as to how I would take my clinical
trial pills on the cruise. These pills have to be refridgerated all the
time. Plus I have to take them at basically the same time every day, two
hours after a light meal. I usually eat breakfast at 8:00AM, drive to work
with the pills in an insulated bag with an ice pack, stick the pills into
the fridge in the breakroom nearest to my office, and then finally take the
pills at 10:00AM.
For this vacation, I will have to carry the pills onto the plane, in the
insulated bag with the ice pack. Anyone think that the ice pack will freak
out the TSA screener? Maybe I ought to bring just plain old ice cubes.
Getting onto the plane is just the first hurdle.
We'll have a mini fridge in the cabin to keep the pills cold on the trip.
But we have some excursions that start at 9:00AM. That means I have to carry
the pills onto the tour bus in the insulated bag so I can take them at
10:00AM. I guess that would be okay. I could put a bottle of water in the
bag, too, and it would stay cold.
Lou suggested that I wake up every morning at 6:00AM, have some coffee and
toast, and then take the pills two hours later at a very convenient 8:00AM.
That way, I take the pills before leaving for any excursion, no insulated
bag required. I guess that would work. Not cool to have to wake up so early
every day on vacation. But it does sound a lot more convenient than dragging
the insulated bag all over the Caribbean and maybe losing it while
The other suggestion that Lou had was to see if I could just take them every
night three hours after dinner. (We bumped it up to three hours because
dinner is not a light meal.) I am going to ask the clinical trial nurse what
she thinks of that idea. It would mean taking the pills at 11:00PM instead
of 10:00AM, and I don't know what she'll think of that.
Oh! One last thought: when we bought our sneakers today, I saw a pink
baseball cap that said Life is Good and I thought, "Yes it is!"
Posted by Karen at 5:36 PM 6 comments:
Wednesday, December 16, 2009
My ankles occasionally got a little swollen during the Gem/Tax chemo, but
that ended 7 weeks ago and it has gotten worse in the last couple of weeks.
On Sunday and Monday night, my ankles and feet were lumpy and strange, and
they had not gone back to normal by morning -- which is what has always
happened in the past.
On Tuesday, my left foot actually hurt to walk on, so I called the nurse for
my oncologist that morning to report this new development.
My oncologist called me later that day to talk about it. He prescribed both
a diuretic and potassium. The diuretic will get rid of this extra water, and
the potassium will stop me from getting leg cramps.
Plus I have to wear compression stockings. Unfortunately, a compression
stocking is nothing like a Christmas stocking. Although, if I did hang one
by the mantle for Santa to fill, I wonder how many presents he could stuff
into it. It's very stretchy. But everything would be crushed by morning.
Well, after one day I see great improvement. I actually have an ankle bone!
I'll be taking these new prescriptions for just one week.
Posted by Karen at 6:23 AM 6 comments:
Saturday, December 12, 2009
Beyond a Reasonable Doubt
Dr Reidel called me yesterday to tell me that my triglyceride level was
high. It has been creeping up since I started the clinical trial, and it is
now officially HIGH.
He was calling to suggest that I start taking a "statin" to help bring down
that number. I picked up the prescription on my way home last night, and I
took my first pilll last night. I read the insert carefully. I am supposed
to watch out for muscle aches and weakness of my legs.
High triglycerides are nothing to be happy about, but the thing is, this is
exactly one of the side effects of the clinical trial drug. (Sugar pills,
not so much.)
So I am feeling really confident that I am getting the real drug. Doing the
All day I have been running around with Lou getting ready for the party. I
just finished ironing the Christmas tablecloths ;^) and everything is all
done. So we are going into the hot tub now, to relax. The I might take a
It is weird to be in the hot tub during daylight hours with the golfers
driving by in their carts. I usually wave hello to them.
Posted by Karen at 1:53 PM 1 comment:
Wednesday, December 9, 2009
Make Me Laugh
Laughing is so good for you. I am really lucky because Lou makes me laugh. I
have been known to be a little funny myself.
In the last few months, we have been making an effort to DVR funny shows so
that we have something to laugh about. This morning we watched some standup
comedy from Comedy Central. We tried two comedians today, but neither one
was very funny. We have like eight shows on the DVR, so it is just the luck
of the draw.
Last night, we killed Season 1 Disc 1 for The Big Bang Theory. Oh my God,
now that is a funny show. I got email from Netflix telling me that another
Big Bang disc is on the way to us.
I cannot believe how funny Big Bang is. We laugh out loud through the whole
30 minutes. Of course it helps that we are complete Star Trek geeks. But we
The first time we saw Happy Gilmore, we were laughing so hard, we had to
stop the movie so we could calm down. We have watched the movie a million
times now; we sort of wore it out so there is no more laughing out loud.
Posted by Karen at 8:24 AM 2 comments:
Tuesday, December 8, 2009
At the Mercy of the Refridgerated Pills
I was thinking about working from home today. I have a little cough and
always think it is better not to go to work and cough on people and make
them sick. Plus I'd enjoy spending the day in my PJs in front of my PC. And
most importantly, I can get a lot done here with no distractions.
Sure, Lou is here in the house, but he is pretty disciplined when he's
working. I think he leaves his office only twice per day: at noon for lunch
and then again at 3:30 for green tea. Sam the dog sleeps all day. Sometimes
she comes in here and demands to be petted by bonking my left arm with her
head. She's very insistent. I mouse with my left hand, so she definitely
interrupts my work. But it is nice, except I end up with Golden Retriever
fur all over my keyboard. Of course, this is not nearly as bad as Spike the
cat (God rest his soul) who would actually walk across the keyboard to get
my attention. I'd end up with fsjbndaigfvpoe5934 in my document.
Anyway, back to me contemplating working from home.
I realized that I can't do it because I left my clinical trial pills in the
refridgerator in the breakroom at work. So I have to go in to the office. In
exactly one hour and forty-five minutes, I have to take four pills.
That's fine. I can keep my office door shut. That ought to contain the
Posted by Karen at 8:16 AM 2 comments:
Saturday, December 5, 2009
Think of Me
The Phantom of the Opera was fabulous. It will be at the DPAC for a month,
so if you are in the Raleigh area, go Go GO!
Lou and I have seen this play seven times now. We saw it in London in 1999,
and the guy who played the Phantom in that production was the BEST ever. The
guy today was pretty darned awesome too.
Anyway, I got a little choked up when Christine started singing "Think of
Think of me, think of me fondly,
when we've said goodbye.
Remember me once in a while -
please promise me you'll try.
Sitting there in the dark theater with the most wonderful guy in the world
next to me, I was slapped with the image of Lou thinking of me fondly after
I am gone.
Lousy thoughts like that sneak up on me when I am not paying attention.
But I quickly reminded myself that today I feel wonderful. My numbers are
good. My tumors shrank significantly. I am pretty sure I am getting the
clinical trial drug. Clearly I am not going anywhere any time soon.
Plus, the unvarnished truth is, I am such a pain to live with, who's to say
that he would think of me fondly ;^)
Posted by Karen at 6:47 PM 4 comments:
Wednesday, December 2, 2009
Alarm Goes off at 5:30AM
I have been feeling pretty good!
As a result I have been working longer hours. And I have been rushing off in
the morning to make the vanpool pickup, which means I have to leave the
house by 6:45AM. Making the vanpool is minor miracle and shows me how good I
am feeling. This time last month, I could not have set my alarm for 5:30AM
and then been able to function at all during the day. I needed so much more
sleep. Now I just need eight hours. Fabulous!
But my feet are still numb. Last night in the hot tub, I accidently kicked
something and apologized to Lou. But I had not kicked him. He said, "You
can't tell the difference between me and the hot tub?" but I can't because
my feet are still numb.
And I am still bald but I can see peach fuzz without the aid of a powerful
flashlight! I wonder if I ought to be doing anything to speed this hair
re-growth. Is there a fruit to eat? A cream to apply? I'm very motivated
because I am tired of wearing a wig. Last week at the grocery store, I stood
in front of some Rogaine products for awhile, but I did not buy anything.
I broke my glasses yesterday, which is a total drag because I cannot read
very well with my contacts. I was on the floor in my office, doing my
physical therapy exercises. I had taken off my glasses and foolishly set
them on the floor next to me. And when I got up, I knelt on them! Not too
much damage -- one lens popped out and the frames are bent. Argh. I am
supposed to get them repaired this morning at Eye Associates across the
street from my office.
My next doctor's appointment is next Thursday for a minor checkup.
My next CT scan is January 14. That will be a big milestone, but I can't
start worrying about it now.
Posted by Karen at 8:45 AM 3 comments:
QUICK UPDATES FOR DEC
Tuesday 12-29-09: Happy Birthday, Lou! Slept pretty well, but kept waking
myself up from dreams where I forgot to take important pink pills. Feeling
pretty good and headed out for a walk now. Plan to put my feet up later
because my ankles are swollen again.
Monday 12-28-09: Another great day! But I am still coughing, and my
complexion belongs on a 15 year old's face. Tonight I take my clinical trial
drugs for the first time after dinner instead of after breakfast. Dinner at
Bubba Gump's ended at 9:00PM so we set an alarm on Lou's phone to remind me
to take the pills at 11:00PM.
Sunday 12-27-09: What a great day! I am coughing a lot less. We went for a
short walk this morning and then a long walk tonight. I think the sunshine
and ocean breeze are helping.
Saturday 12-26-09: I just woke up minutes ago. I am quickly blogging half
asleep and checking email so that Lou can then pack away my laptop (it is
coming with us on vacation). Feeling pretty good. I just coughed my first
cough of the day -- not too bad.
Friday 12-25-09: Merry Christmas! I am using my NEW CHRISTMAS LAPTOP to
update my blog. Santa was very good to me this year. Slept for hours
yesterday afternoon after taking my first dose of antibiotics for this
cough. Hoping to feel much better soon. Today I must finish packing for the
Thursday 12-24-09: My cough was getting worse, so I got some antibiotics.
Wednesday 12-23-09: I am going to have to start taking the diuretic again
because my ankles swelled up today despite the compression stockings.
Feeling pretty good, otherwise. When I remember to take the albuterol, no
coughing. Hey I am on vacation! Woo Hoo!
Tuesday 12-22-09: Today I do not take the diuretic, so i will keep a watch
on my ankles. Feeling good! Started packing for the cruise!
Saturday 12-19-09: Cough! Cough! I starting taking albuterol and my cough is
improving. Lou and I got new sneakers today for our cruise. (Our current
sneaks were pretty raunchy looking; the red dirt out here stains
Friday 12-18-09: Cough cough cough cough! Good thing I am working home today
to avoid driving in the expected afternoon snow.
Thursday 12-17-09: Let myself sleep late today, to make up for yesterday.
Feeling good! Ankles are much improved. Got a bit of a cough though.
Wednesday 12-16-09: Too early to tell how I feel. I have physical therapy at
7:30AM today. Who makes these early morning appointments? Oh yeah, I do.
7:30AM always seems like a good idea till the alarm goes offFriday 12-11-09:
Lou and I have to run a couple of errands this morning. He let me sleep till
8:00AM and brought me tea in bed! Life is good. Checkup yesterday went well.
Something related to white blood cells is low but not low enough to stop the
clinical trial. My next checkup is mid-January with a CT scan.
Oops forgot to save a couple of days!
Wednesday 12-09-09: It is pouring rain this morning! I feel pretty good. I
have a boo boo in my mouth that is not healing. Looking forward to some
energy work today with Amelia and Healing Touch. Last time, I don't know
what she did, but I felt as though every inch of my skin was buzzing with
electrical energy. It was cool.
Tuesday 12-08-09: I've had three mild yet unpleasant side effects for about
a week but I don't feel like telling you about them. I'll tell the doctor on
Monday 12-07-09: Happy Birthday, Dad! I feel really good today. Got a busy
week ahead of me.
Saturday 12-05-09: Headed out soon for a massage which I really need because
my muscles ache. (Both my knees are killing me; what's that about?!) Today
Lou and I plan to eat lunch at the Mellow Mushroom and see The Phantom of
the Opera at the fabulous DPAC. Feeling so good!
Friday 12-04-09 Evening Update: Spent the evening writing Christmas cards
and watching TV with Lou. What a great night!
Friday 12-04-09: Wow, I slept till 8:00AM and only woke up because the phone
rang. I feel great. Tomorrow we go see The Phantom of the Opera!
Thursday 12-03-09: Glasss are fixed! The Eye Associates in Cary NC is always
a pleasure to deal with, especially manager Jeremy. I defintely see peach
fuzz. Salt and pepper colored, though. But I won't complain about the color.
I just want some hair.
Wednesday 12-02-09: Woke up feeling great at 7:20AM! No alarm clock today.
Can't ride in the vanpool because I have to go to physical therapy this
Posted by Karen at 8:44 AM No comments:
Thursday, November 26, 2009
I have a lot to be thankful for!
My awesome husband
My happy marriage
The comfort I receive from prayer
My excellent job
My "Cadillac" health insurance
My brilliant and fun coworkers
My wonderful parents
Duke's Bone and Soft Tissue Sarcoma Center
Significant shrinkage in all eight tumors
Evidence that I am getting the clinical trial drug
CyberKnife radiation surgery
Avante physical therapy
All my friends
My bossy Golden Retriever Sam
Memories of Molly, Spike, and Winnie
Doane's guardian angels
Long term disability insurance
Foyle's War, 2 new episodes just arrived from Netflix
That I have not breathed a word to my best friend that my cancer is back
because I cannot burden her with worry about me because she is struggling
with her husband's cancer. I've had the honor of supporting & encouraging
her, the way you all support & encourage me.
Posted by Karen at 9:36 AM 6 comments:
Tuesday, November 24, 2009
Woo hoo! My hemoglobin has been hovering in the nines for months, and
yesterday it was eleven. No wonder I have been feeling so good! Twelve is
the low end of the normal range, so you could say I am almost normal now ;^)
Duke Clinic 1C was jam packed yesterday, probably because of the holiday
week. All those Thursday and Friday patients have to be seen at some point,
Monday through Wednesday. I sat around for 50 minutes waiting to have my
blood drawn. Yikes. Sure, I was reading an Agatha Christie paperback,
printed in 1971, that I bought at the Wake County library sale for a buck.
The title is something about chimneys. You have to be gentle when you're
reading a paperback that is 38 years old.
Turns out that the nurses who draw blood through ports were really backed up
-- but the nurses who draw blood by sticking a needle in your arm were less
backed up. Lesson learned: in the future, I will tell the desk clerk when I
check in that I will take the first available nurse, that it does not have
to be a port nurse.
Ooooh, maybe I shouldn't call them port nurses. Makes them sound like they
are in the Navy.
Anyway, all is well. I am continuing in the clinical trial.
Etiquette question: Yesterday in the clinic waiting room, I saw someone that
I work with. This person seemed to be accompanying a parent. I did not go
over to say hello. I was not sure if it would be appropriate or intrusive.
Plus to be honest even though I say hello to this person every day in the
hallway at work, I do not know their name. Hard to say hello when you do not
have a name. Plus, I always wear my wig at work and always wear my baseball
cap at the clinic. What if I was not recognizable? That would have been
Posted by Karen at 8:47 AM 3 comments:
Saturday, November 21, 2009
Searching for Side Effects
On Friday I was talking to a friend at work about how if you pay too much
attention to a list of side effects, maybe you start to manufacture some of
those side effects...
I admit that I have been looking for side effects this week, hoping to
determine whether I am actually getting the study drug, but at the same time
I have been reveling in how awesome and energetic I feel. It has been a
Well, on Friday, I did not feel all that great. I had some exhaustion at
midday (a giant cup of coffee helped) and a dry mouth. The dry mouth stuck
with me all day, but is gone this morning. It was not so bad that I had to
use the magic mouthwash, but I did need to chew Trident all day. The
exhaustion was back at the end of the day. How do I know it wasn't just
normal end-of-a-long-week exhaustion? We were on our way to Genki for a
fabulous sushi dinner when I decided I was too tired (!!) and so we picked
up Chinese takeout and headed home to watch the "new" Star Trek movie (which
had just arrived via Netflix).
Then on Saturday I had real chemo exhaustion and had to go to sleep for two
hours in the afternoon.
So... what do you think? Maybe I am getting the real trial drug and not the
[I'm going to stop obsessing about this now.]
Posted by Karen at 9:12 AM 3 comments:
Thursday, November 19, 2009
If I take this really powerful flashlight and shine the light across my
scalp and then lean in really close to the bathroom mirror, I can see some
Goodness gracious, I am feeling impatient to see some hair growth. I got my
last chemo on October 22 -- that is virtually a month ago. I think in 2007
my hair came back faster than this. (Does anyone remember?)
I have completed four days of the clinical trial. I haven't noticed any side
effects -- and believe me I have been looking for them because I want to
know if I am getting the drug and not the sugar pills.
The study drug comes in a Z-fold card that contains an entire week's worth
of pills. The pills need to be refrigerated, and they need to be taken two
hours after I eat breakfast. Two hours after breakfast, I am in the office.
So I have been lugging this Z-fold card back and forth to work each day in
an insulated bag with an ice pack.
If these are fricking sugar pills, then they are the most pampered sugar
pills on the planet.
Posted by Karen at 10:37 PM 2 comments:
Tuesday, November 17, 2009
Two Trips to Duke on Monday
I started the clinical trial! No way to know if I am actually getting the
It is sort of complicated because the pills have to be refrigerated and
taken precisely 2 hours after a small meal.
I spent the morning at Duke! Traffic on 147 made me 25 minutes late (until I
hit 147, I was going to be early for once).
I had blood drawn, had an EKG, peed in a cup, answered a million questions
about how I feel, saw Dr Reidel, received my drugs in a sack with an ice
pack to keep them cold, and then finally headed to the office.
At the office, I got some AWESOME new info from someone; totally cleared up
my confusion on a difficult topic.
Then about ten minutes before I was scheduled to take my first dose of the
study drug, the nurse called me. She was frantic to make sure I had not
taken the drug yet. My heart sank. Had they determined some reason to keep
me out of the clinical trial?! But no. They had not taken enough blood, and
they absolutely needed to do that before I took my first dose. If I would
come back, they would pay for my parking.
I headed back to Duke. It took awhile for them to slip me in between other
patients, but they finally drew two more vials of blood. The nurse ordered
me to go have a light snack so that I could take my first dose in two hours.
The Seattle's Best coffee shop in the Duke Clinic cafeteria had a lovely
pumpkin loaf for my light snack.
As I left, I felt completely exhausted, exactly how I felt last week after
they took six vials of blood. I drove home and crawled into bed and slept
for over a hour. After my nap, I felt fine.
Posted by Karen at 8:54 AM 2 comments:
Sunday, November 15, 2009
Clinical Trial Starts Monday
Tomorrow morning, I go to Duke to start the clinical trial for AP23573.
They are supposed to run a bunch of tests (bloodwork, EKG, etc), give me the
first dose, and then watch me for one hour to make sure I don't keel over
with some kind of adverse reaction.
This is a randomized double-blind study, so nobody is supposed to know if I
am getting the drug or the sugar pill. I've been praying to get the drug. I
even asked my friend Doane to send a couple of her guardian angels to
intervene on my behalf when the coin gets flipped.
I have one task left to do before Monday morning. I need to update the list
of medications that I currently take, and I have to add approximately when I
started taking each one. Jeepers. Who knows that kind of info? I mean, I can
hardly remember what I had for breakfast this morning.
Posted by Karen at 5:59 PM 2 comments:
Thursday, November 12, 2009
Physical Therapy Working Wonders
My physical therapy for my bulging disc has been going great. The pain has
been reduced by a ridiculous and wonderful 85% after just three visits.
It turns out, my psoas muscle was really tight and causing most of the
trouble. That was the reason I couldn't even stand up straight. Well, after
everything that poor psoas muscle has gone through, no wonder it was tight
and achy. We bombarded it with radiation and chemo! Then the tumor shrank
significantly -- does that leave a gaping hole in the muscle or what?
Anyway, I have been working on stretching it out. The first PT appointment
was actually terribly painful as the therapist dug into the muscle
mercilessly. I had to go home, take a pain pill, and go to sleep. But the
results have been fantatsic. I can now stand up straight. Even more
importantly, I can sleep again! And walk!
The nerve pain from the bulging disc is almost all gone too. I guess now
that the psoas is not pulling everything out of alignment, maybe the bulging
disc is not pushing up against the nerve root any more.
Life is good!
Posted by Karen at 12:03 PM 7 comments:
Monday, November 9, 2009
Chemo Pity at the Flu Clinic
The Wake County H1N1 flu clinic in Fuquay-Varina was scheduled to open at
9:00AM. I pulled up at 8:15AM and there was already a long line of people. I
parked on the street and jumped into the line as quickly as I could. I
seemed to be the only adult there without children. The kids were running
around playing, and the parents were mostly chatting. I was standing with
some very nice people, which is good, because we were together for almost
It was sunny and beautiful, and I ended up bringing my winter coat back to
my car because I did not need it.
I had deliberatly worn a baseball cap instead of my wig, because I wanted it
to be obvious that I was really in the high risk category. (Who in their
right mind would shave her head just to bluff her way into an early flu
shot?) In addition, I had brought along my asthma inhaler with official
prescription sticker, in case I needed to further convince them to give me
the shot. I am a ridiculous worrier.
For an hour and ten minutes, the line did not move at all. After that, we
made slow but steady progress toward the building. We could not see the door
from where we were, and I was reminded of being in line outside the Vatican
Museum in Rome, thinking that when we finally got around the corner, we
would be near the door -- only to find that when we got around the corner,
the door was still nowhere in sight.
After about an hour and forty minutes, we had come within sight of the door;
at that point, I guess-timated that it would take at least another forty
five minutes till I was actually getting the shot. A nurse was working her
way down the line, explaining the difference between the mist (live virus
for healthy people) and the shot (dead virus for high risk people).
One of the moms said she was surprised that her five-year-old daughter had
begged for the shot instead of the mist; she just could not deal with the
idea of having something squirted up her nose. (That led to a funny
conversation about dogs getting the kennel cough vaccine squirted up their
noses, and what is the chance they are really giving kennel cough vaccines
in there?) I said that I had to get the shot.
The nurse took a look at me with my bald head (not really hidden by my
baseball cap) and asked if I was getting chemo. She suggested that I make
sure that I did not end up getting my shot right next to someone who was
getting the mist, because the mist could easily disperse in my direction and
make me sick. She said that I ought to wear a mask just to be safe and she
went back into the building to get me one.
Ten minutes later, the nurse came back with a mask for me, but she said that
they had decided to pull me out of the line and give me the shot right away!
They didn't think it was a good idea for me to be in line for so long or to
be anywhere near the mist. Also, there were apparently a lot of people who
showed up sick and germy, and they didn't want me exposed. (Don't worry, the
people closest to me all seemed very healthy.)
This was awesome! Chemo pity at its best!
I said goodbye to my new pals, put on the mask, and slipped in a side door.
From what I could see, it was pretty crowded in there. I was handed over to
another nurse who led me away to the quiet side of the building, gave me the
shot, and then brought me out the back door so I didn't even have to walk
past the long line on my way back to my car.
Gosh, this was just an excellent experience!
I'll tell you, I have been pretty worried about the swine flu and the
availability of the vaccine. I figure that with my asthma and the chemo, I
was really high risk.
So one more time, let's do the happy dance!
Posted by Karen at 11:28 AM 2 comments:
Sunday, November 8, 2009
Exhausted on Saturday
I was fine when I woke up on Saturday morning around 9:00AM. Amazingly, my
back pain has been greatly reduced by that first visit to physical therapy
and by doing the exercises that she gave me.
Lou and I had big plans for Saturday: a trip to Costco, followed by sushi
lunch at a new restaurant called Japan Inn on Falls of Neuse Road.
On the drive to Costco, it became clear that I wasn't feeling so good. I
started arguing with our GPS system, doing U turns, and re-selecting Costco
as our destination because I was certain that I had accidently chosen some
other destination. It was the chemo exhaustion side effect! It's a
ridiculous exhaustion that makes me very difficult to deal with. This was
completely unexpected because I got my last chemo two and a half weeks ago
and I've been feeling better and better every day for the last week.
We made it to Costco safely, but shopping was difficult. We were trying to
buy my Christmas present, which was supposed to be either a laptop or a
desktop computer to replace the one in my home office. It took forever to
narrow it down to a choice between one particular laptop and one recently
marked down fascinating desktop computer with a touch-screen monitor and no
tower because all the computer's guts are built into the back of the
Somehow we got through Costco, got through lunch, and I went straight to bed
when we got home.
When I woke up, I was a new woman. With a new laptop! But I won't see it
again till Christmas.
Posted by Karen at 9:32 AM 3 comments:
Thursday, November 5, 2009
Bananas in the Filing Cabinet
The bananas in my filing cabinet really struck a chord with a lot of you.
When I finally made it into the office on Tuesday morning, you'd have
thought the bananas would be uppermost in my mind. But I got distracted
getting a cup of coffee and checking email. I think Meredyth IM'ed me asking
about the bananas, and that is when I pulled open the filing cabinet drawer.
A strong yet pleasant banana aroma wafted out at me. The two bananas were
covered in brown spots, but the skin was intact. There was no leakage. There
were no fruit flies.
The bananas were soft but not disgustingly so. In fact, they would have been
perfect for banana bread.
I left them on the counter in the break room. People at work will eat
anything. Maybe there is someone who loves a really ripe banana, someone who
only buys the clearance bananas at the grocery store.
Later I noticed that the bananas were gone.
Posted by Karen at 7:44 AM 1 comment:
Tuesday, November 3, 2009
No More Chemo!
Yesterday, the decision was easy to make: No More Chemo! Instead, I will
start the clinical trial in two weeks.
My October 30 scan results show the following:
•no new tumors have appeared
•the little lung nodules all stayed the same size
•the tumor in the psoas shrank by another teeny bit
•the tumor in the pancreas shrank by another 20%
Overall, this entire four-month course of chemotherapy was highly
successful! All of the tumors shrank significantly since the chemo started.
The best part is that I am done chemo. Doing the happy dance!
I should probably clarify that I am done chemo for now. The plan is to
monitor my insides closely, and if a new tumor appears or if there is
significant growth of the old tumors, then we would use chemo like a
baseball bat to beat the cancer senseless again.
This clinical trial is pretty interesting. It will test the effectiveness of
a drug (AP23573) that might help keep the cancer from starting to grow
again. Presumably, the longer you can keep the cancer from starting to grow
again, the longer you live... the longer you live, the better treatments are
available... and the better treatments are available, the longer you live.
(I'm feeling dizzy again. How about you?)
It is a double-blind, randomized clinical trial, so no one will know if I am
getting the drug or not. I am going to have to say, "The drug that I might
be taking..." but that is cool.
Yesterday we started the ball rolling for the clinical trial. I signed a
bunch of paperwork, and then they took a ton of blood for the baseline
labwork. Maybe that is why I completely CRASHED when I got home and slept
for two hours. But after that, I felt fabulous and logged on to work for two
I am very excited to be going in to the office this morning, and not just
because I put a banana in my filing cabinet last Monday and have not been
Posted by Karen at 8:17 AM 8 comments:
Sunday, November 1, 2009
Rainy Sleepy Sunday
Today looks like it will be a cold, rainy day, perfect for hanging around
the house doing nothing in my PJs. The high today will be 58 degrees.
Lou and I are watching the X Men Wolverine movie. (We took a break from the
movie so I could update my Halloween posting about the little pirate who ran
screaming off our porch.)
Today, nothing much needs to happen. I need to read the clinical trial
consent form one more time, and Lou needs to watch a little football.
My oncologist is a Phillies fan, so I might watch highlights from the World
Series Game Four tonight so I have some baseball banter for our appointment
Emotionally, I am definitely feeling a lot better than yesterday. I guess I
just needed to vent. Plus, I feel so much better. I have some energy again!
No more twitching and shaking!
Posted by Karen at 8:36 AM 3 comments:
QUICK UPDATES FOR NOV
Friday 11-27-09: Happy turkey leftover day ;^) Slept great, feel great, and
had a turkey sandwich for breakfast.
Thursday 11-26-09: Happy Thanksgiving! Slept great, fee great, and already
baked a pumpkin pie this morning.
Tuesday 11-24-09: Woke up feeling pretty good! I have been sleeping through
the night, which is really fabulous but which might not sound so exciting
unless you have spent nights waking up over and over.
Monday 11-23-09: I am headed to Duke this morning to get lab tests to see
how I am doing on the clinical trial. Had a lot of muscle aches yesterday,
so last night we sat in the hot tub with cold raindrops falling on our
heads. It was lovely!
Sunday 11-22-09: I am feeling much better today!
Saturday 11-21-09 UPDATE: Total chemo exhaustion around 2PM! Had to crawl
into bed and zonk out for 2 hours. Jeepers. I am torn between being THRILLED
that I am getting the study drug and BUMMED that I do not feel well. Isn't
that just human nature?
Saturday 11-21-09: Lou is off to the gun show, so I am on my own this
morning. Sam wants to go for a walk, but it's only 45 degrees out... Slept
great. Feel like I am fighting off a cold, so I took some C and some
Thursday 11-19-09 Night Update: Great dentist appointment today; no
cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I
have been scurrying around the house tidying up and getting things ready for
the house cleaners, who come tomorrow morning. (I am such a lucky woman!)
Can you belive how good I am feeling? It is a miracle.
Thursday 11-19-09 Night Update: Great dentist appointment today; no
cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I
have been scurrying around the house tidying up and getting things ready for
the house cleaners, who come tomorrow morning. (I am such a lucky woman!)
Can you belive how good I am feeling? It is a miracle.
Thursday 11-19-09: Woke up early for a dentist appointment. Feeling pretty
good. Baldness and numb feet seem to be my only complaints. Going to be a
Wednesday 11-18-09: Did NOT sleep well, but I feel good this morning. I
certainly did my stretches yesterday and went for a walk.
Tuesday 11-17-09: I did my stretches this morning!
Monday 11-16-09: I have been feeling so good, I slacked off my stretching
and woke up this morning in pain again. Nothing like pain to motivate me to
do what needs to be done.
Sunday 11-15-09: Happy to report that I am finally sleeping through the
night again. No more waking up four times a night in pain! Yahoo.
Friday 11-13-09: Going to see the Steve Miller Band tonight! Feeling good.
Slept LATE which felt great after two mornings waking up early. Last night I
was exhausted after a long day (10 hours at work).
Thursday 11-12-09: I am feeling pretty darned good! I have not had to nap
for the last couple of days. I have only experienced a little exhaustion. Of
course, my feet are still numb, and I still have no hair, but who can
Monday 11-09-09: Big day today. Going to try to get an H1N1 flu shot and
have another physical therapy appointment for my back. I think that I might
feel stubble on top of my head! Is my hair starting to grow back? Feeling
okay this morning. Tired.
Sunday 11-08-09: Feeling pretty good this morning. Heard on the news about
H1N1 flu shot clinics in Wake County tomorrow morning. I really really want
to get a n H1N1 flu shot ASAP! I wonder how early I ought to show up to get
Friday 11-06-09 (Evening) Today was the first day I did not have to take a
nap! I did yawn a lot in the van on the way home. If I could have reclined
my seat, I could have fallen asleep. This has been a great week. Every day,
I have felt a little better. Lou and I just came in from the hot tub. I'm
all relaxed and my back does not hurt.
Thursday 11-05-09 Afternoon Update Physical therapy was painful but awesome.
It is clear that my psoas muscle is very tight and irritated and causing
about half of what I thought was bulging disc pain. Afterward, I was
completely wiped out and dragged home and went to sleep. I just woke up, had
a cuppa, and am about to log on to work. Feeling pretty good now.
Thursday 11-05-09: Today I have my first physical therapy appointment for my
bulging disc. I feel happy and energetic. My right foot is less numb than my
left foot. This morning I experienced the Unspeakable Side Effect but now I
Wednesday 11-04-09: Woke up at 5:30AM so I can ride in my fantastic Triangle
Transit Authority vanpool today. My ribs ache less this morning. My energy
crashed again yesterday afternoon and I had to nap. So even though I feel a
lot better, I still can't get through the day without a nap.
Tuesday 11-03-09: All my side effects will eventually disappear, but today I
woke up with numb feet, rib pain, and baldness ;^) Looking forward to
talking to my primary care physician this afternoon about the bulging disc.
Monday 11-02-09: BEEP BEEP BEEP alarm clock woke me up at 6:30AM because we
have to be at Duke by 9:00AM. Woke up with all the usual complaints, none
too terrible. Looking forward to talking to the doctor this morning.
Sunday 11-01-09: Welcome to November! Don't forget to turn back your clocks.
I have only been up for 30 minutes, but I am feeling better today. Hands are
Posted by Karen at 8:07 AM No comments:
Saturday, October 31, 2009
Bald Head Scares Trick-or-Treaters
Last year was our first Halloween in this house. We got 60
trick-or-treaters. It was an awesome night. The minivans would pull up, the
doors would be flung open, and a bunch of kids would come tumbling out onto
our lawn in their costumes. They bravely did the entire three-house
cul-de-sac on foot and then climbed back into the minivans to zoom off into
the night. Tonight we got 51 kids, and it was just as awesome as last year.
I wanted to hand out candy to the trick-or-treaters without a hat or a wig
or a scarf -- just BALD. I had hoped that it wouldn't be too scary for the
little ones. After all, lots of grownups wear costumes to hand out candy.
(Lou wore his usual getup: black cowboy hat and Star Wars light saber.)
But a little tiny guy dressed like a pirate took one look at me and ran
screaming from the porch, all the way across the lawn, back to Mommy. He did
not want to take the candy from the scary bald lady.
So I put on a hat.
I got Super Chemo nine days ago, and I still feel lousy. This was my 6th
cycle. They warned me that with every cycle, the side effects would be
worse. I know it's not that bad compared to some of the stories I've heard,
but I still have the exhaustion, aches, pains, dizziness, hot flashes,
shaking hands, twitching eyes, numb feet, dry mouth, ringing ears, and I
keep running out of steam and falling asleep. By today, I expected to be
feeling a lot better. I hate complaining like this. But I was thinking, you
cannot "cheer me on" if I do not tell you that I need it.
On Monday, Lou and I will meet with the doctor to hear the results of the
scan and decide what to do next. I am not worried about the results of the
scan; I expect more shrinkage. But I have to tell you, the idea that the
doctor might suggest two more cycles of chemo just fills me with dread. Lou
is great -- every time I say something about whether I can handle two more
cycles of chemo, he tells me to just wait for Monday.
Posted by Karen at 5:56 PM 1 comment:
Friday, October 30, 2009
Another Big Scan Day Today
Today's Big Scan Day sort of snuck up on us! I did not give you a countdown
or much of a warning. To be honest, that last fabulous MRI was so awesome
that it wiped away my natural anxiety for this scan.
However, I did just finish three back-to-back rosary novenas, so I was doing
my part in the prayer department :^) (For a novena, you say the rosary every
day for nine days in a row for a specific favor; three novenas takes 27
days.) First novena, I asked for good results on the upcoming scan. Second
novena, I copied Jesus by asking, "Father, if you are willing, please take
this cup away from me. Otherwise your will be done not mine." And the third
novena, I asked for help making the right decision on Monday -- to choose
the best next step in my journey.
Lou is coming with me today. I tried to talk him out of it because I am just
going for a scan and won't see the doctor. But Lou won't budge. I think he
considers it his duty which is so sweet. I have been pretty pathetic all
week, and I think he doesn't trust me to drive to Duke safely without him
there to poke me awake if I pass out or get dizzy. (I have not been dizzy
since Tuesday morning. I will not be passing out. Nothing to worry about.)
We'll hear the results from this scan on Monday.
Yesterday, I read through the Clincial Trial paperwork -- twice.
Posted by Karen at 7:43 AM 4 comments:
Wednesday, October 28, 2009
Do You Want My Posts Via Email?
I finally found instructions on my blogspot.com host to explain how I can
configure the blog to send you email whenever I publish a new post!
If you are interested, let me know by sending me email at firstname.lastname@example.org.
But, you won't see quick updates or comments via email.
I have not decided yet whether to email the entire post or just the first
255 characters. The question is, should this email serve as a notification
that I have posted something new?
Either way, the email would end with a link to the actual blog.
Posted by Karen at 9:36 AM No comments:
Tuesday, October 27, 2009
Tired of Napping
Yesterday morning I felt just fantastic and drove in to the office. But
after a couple of hours, I crashed and felt very tired and had to head home.
When I got home, I crawled into bed to sleep because that was all I was good
for. But as I lay there, I so much did not want to take a nap. I am so tired
Posted by Karen at 9:17 AM 3 comments:
Sunday, October 25, 2009
Who is Your Nurse?
The treatment room was super busy on Super Chemo Day, and I finally got
called at 3:00PM (my appointment was for 12:30).
My nurse asked if I wanted to have a bed instead of a recliner. I knew that
I would be getting chemo for like three hours and figured a comfy adjustable
hospital bed would be delightful -- an opportunity to go out in style since
I am hoping that this is my last chemo treatment for awhile.
So I get the bed, I get hooked up, everything is going fine... and then the
machine starts beeping because it is time to change the bag of drugs. Some
random nurse comes over and asks (like they always do) "Who is your nurse?"
and for the life of me I have no idea. Usually I read the name off the
badge. Usually when I first get into the treatment room the nurse makes a
big production about saying, "Hi Karen, I'm insert-name-here and I'll be
your nurse today."
But all I could come up with was the fact that this nurse was married on
March 24, 1968 which seems like very strange info for me to have, eh? But
when she verified my birthdate (March 27, 1965), she immediately volunteered
her wedding date because they are sort of close. (Not really though.)
So I say this to the random nurse: "I have no idea who my nurse is, but I
know she was married on March 24, 1968," and the random nurse starts
laughing hysterically because she knows exactly who I mean. Turns out, Nurse
Penny manages to work her wedding date into a lot of conversations. Such as,
you ask how old her daughter is, and she starts by counting from her own
My red blood cell count was 9.5.
Super Chemo went really well.
My next appointment is Friday, October 30, for another big CT Scan With
Contrast. This is the scan to see how well the entire six cycles of chemo
did at shrinking the tumors. I am very hopeful and enthusiastic because the
results so far have been just fantastic. Then on Monday, November 2, we will
decide what to do next: monitoring, clinical trial, or more chemo. Lou will
be coming to that appointment to help make the decision.
To prepare for the decision, Dr Reidel gave me a lot of info about the
clinical trial, but I will have to type that in some other time. I am
overdue for a nap now.
Posted by Karen at 1:56 PM 4 comments:
Thursday, October 22, 2009
Super Chemo Day #6
Today we go kill some cancer cells! It is Super Chemo Day, when I get both
Gem and Tax. We're using both of the big guns today.
The wierd part for me is that this is #6, so it is probably my last Super
Chemo Day. Now that is pretty darned exciting, to have the chemo coming to
But I am living in some uncertainly because there is the possibility that we
will decide to add on two more cycles. That happens only RARELY and only if
the next scan (Oct 30 with results on Nov 2) shows even more dramatic and
significant shrinkage. In that case, there might be some value in two more
cycles to see if even more shrinkage can be achieved. Of course, I have to
be able to deal with the side effects. And the doctor has said that he is
leaning more toward immediately going into the clinical trial instead. So...
I am praying a rosary novena asking for help making the right decision and I
asked my super-web-skilled brilliant friend Allison in Seattle to surf the
web looking for anything she can find on 8 cycles of Gem/Tax versus the
standard 6 cycles; we'll see if she can find anything.
What else can I tell ya?
I'll have to keep a mouth full of ice for the hour that the Tax is
administered to try to minimize the dry mouth. It is sort of difficult but
well worth the effort because it has helped. I hate that dry mouth!
Soon I will be interested in researching the whole bulging disc thing to see
what I should be doing. Thanks to everyone who has given me info on what
Ah, fantastic fun planned for the weekend: Cindy flies in from Florida to
spend the weekend with us! We are so psyched. Apparently we are ALL required
to watch the Miami Hurricanes college football game on Saturday night. Woo
Posted by Karen at 7:13 AM 2 comments:
Monday, October 19, 2009
Excellent MRI Results!
I just cannot even believe how great the news is!
Dr Reidel just phoned me with the results of Friday's MRI. The tumor in the
psoas muscle SHRANK SIGNIFICANTLY! The report says that it started at 4.7 by
4.8, and is now 2.5 by 1.9. Maybe some of my mathmetician pals can tell me
what percentage shrinkage that is.
Remember, at the last scan, this is the one tumor that did not shrink at
all. But we were cool with that because it had been already beaten up pretty
badly with the CyberKnife radiation, and sometimes tumors like that just sit
there and never shrink but never grow either.
So why am I in pain?!
I have a bulging disc. A plain old ordinary non-life-threatening bulging
disc! It is pushing on a nerve root.
The standard approach would be to use ibuprofen for at least a month to try
to get the disc un-bulged, and if that does not work to try a steroid
injection to shrink the disc.
The tricky thing is that ibuprofen could cause kidney trouble during chemo,
so I cannot take the max. The max is 2400 mg per day. I am going to take
1200 mg per day, see if that helps.
Well, I can tell you, just knowing that it is a "disc problem" and not a
"cancer problem" has already helped!
I am sitting here laughing and crying all at once. This is such awesome
news. I am so grateful. I have been praying pretty hard for help, and I know
a lot of you are praying too, and it is working. I am going to have to calm
down a little bit before I jump in the car and head to work.
Posted by Karen at 9:54 AM 12 comments:
Expecting MRI Results Today
I expect to hear my MRI results today. On Friday, the nurse said that the
preliminary results for an MRI are available within 24 hours, and the final
report is available within 48 hours. I am really looking forward to getting
the scoop. At this point, I am not even nervous; I just want to know what's
going on in there.
I had another night of waking up in pain in the wrong position. Maybe I need
to pile up all available pillows to build a fort around me so I can't roll
over. Probably wouldn't work. Probably I'd end up tossing the pillows over
at Lou in my sleep. Oh he would just love that ;^)
I had a great weekend for ironing. I brought down some winter clothes and
packed away some summer clothes. (It will be 63 degrees today, but it will
be 77 degrees this Wednesday through Friday). I'll see those summer clothes
again soon enough when we start packing for the cruise!
Speaking of weather, did you know the term "cumulus cloud" was coined in
1804? Just another tidbit from The Age of Wonder, from the chapter about how
some Englishmen used fabulous new hot air balloons and hydrogen balloons to
gather data about nature. It is funny how long it is taking me to read that
book! Does not help that I keep reading fiction. About a week ago, I
finished re-reading all the Harry Potter books. That was a lot of fun; that
went very quickly.
Posted by Karen at 8:59 AM No comments:
Thursday, October 15, 2009
I am having an MRI on Friday to see what is going on with the tumor in the
psoas muscle. Specifically, we are going to "rule out spinal cord
I have been in low level pain for a week. At night, I can't lie on my back,
on my stomach, or on my left side. Luckily, Advil and Tylenol have taken
care of the pain for the most part, although I do wake up around 3:00AM
every night in pain because at some point I rolled over into a painful
If I stand up straight, my pain level jumps from a dull aching 1 to a
serious 4. So if you see me and notice that I am walking sort of slumped
over to the left, that is why. Slumpy is comfy! [Oh, that is awful.]
The really great part is that when I am sitting in my ergonomic office chair
at work, I am comfortable and nothing hurts. I forget about being sick, and
I completely focus on work. As I have said before, sometimes I forget to go
home! ;^) Thank God I do not have a job where I have to stand up straight.
Dr Reidel suggested that the pain might be radiation recall, which is when
you have radiation followed by chemo -- and during the chemo, the radiation
side effects (redness, pain) come back.
Easy Chemo was very easy today. We definitely killed some cancer cells
today. I got another Aranesp injection (hemoglobin at 9.4). The best part
was when my nurse teased the pregnant nurse who dropped my Neulasta shot,
asking if she wanted to give me this shot too. I love the idea that I helped
add a story to the Treatment Room folklore.
Posted by Karen at 5:40 PM 7 comments:
Wednesday, October 14, 2009
I Miss My Eyelashes
You never know how good you have it till it's gone. In this case, I'm
talking about eyelashes.
Who knew eyelashes were so darned important?
Now that mine are almost all gone, my eyes are constantly irritated with
dust and whatever other, um, irritants I don't even want to think about. So
my eyes water a lot, which washes away any eyemakeup I put on.
Luckily I wear glasses, and you can't really see my eyes. Hmmm, you'd think
my glasses would provide some dust protection. I must live and work in a
particularly dusty environment.
My local news will be doing a report tonight on that new prescription drug
that helps you grow nice thick eyelashes. The reporter said in a really
ominous tone that there are side effects. I want to see this report. Maybe
on Thursday I'll ask for a prescription. What's a few more side effects? I
probably wouldn't even notice them.
Posted by Karen at 9:36 AM 2 comments:
Tuesday, October 13, 2009
On the way to work yesterday, I called Chemo Nurse Marni and she actually
answered her phone, so I didn't have to leave a message. That was excellent.
I reported my hip pain. I didn't take any Advil yesterday morning so that I
would be able to characterize the pain for her. When I told her that, she
immediately piped up with, "Let me ask you some questions about your pain,"
and we both started laughing like maniacs.
Anyway, the questions were great because I got to say NO to them, and they
are the questions that would indicate that the nerves are involved with the
tumor in the psoas. Like, "Do you have shooting pain down your leg?"
So now I am convinced that the pain is just the tumor sitting there
whimpering and smoking and dying from all the chemo and radiation. That's
I'm supposed to call back if it gets worse; otherwise just take notes about
the pain and report to the doctor when I see him on Thursday.
This Thursday is Easy Chemo 6. We originally planned six cycles, so this
might be the last one.
Posted by Karen at 8:46 AM No comments:
Tuesday, October 6, 2009
Waited Three Hours
I called the triage nurse yesterday just after 11:00AM to report that I was
very dizzy and needed to hear back from them because this was a completely
new and unpleasant symptom.
I had surfed the web a little and saw that dizziness is on the list of
things you are definitely supposed to call your oncologist about. It can be
caused by anemia, which of course I was just talking about yesterday.
Well, three hours later, I still had not gotten a call back from the triage
Lou said I ought to call Dr Reidel directly. It was surprisingly hard to do
that; I had to psych myself up. I didn't want to bother him. That seems kind
of funny now. Maybe it just goes to show how impaired my judgement was.
Anyway, Dr Reidel had given me the phone number to reach him directly, so I
used it. When I explained the dizziness, he suggested that I might be
dehydrated and told me what to do to fix it. He suggested that if I was not
better in 24 hours to call back. He agreed that it might be my red blood
cell count, but that we should rule out the dehydration first. That was
I immediately drank some grape Pedialyte (baby gatorade type drink). I found
an unopened bottle in the fridge, leftover some "stomach upset" from weeks
and weeks ago. Dear God that was so gross and sweet! (I bet babies love it
I have not had any dizziness today, which is awesome. I am going to keep
aggressively re-hydrating today.
Today I am not feeling that great. It's the flu-like symptoms from the
Neulasta shot, I think. Some bones hurt and I am so weak. I was trying to
fold sheets and I had to put them down because they were too heavy. (Yes, I
was doing laundry. Yes, I iron my sheets. Yes, I am insane.)
Posted by Karen at 9:20 AM 8 comments:
Monday, October 5, 2009
Red Blood Cell Count Still Low
Remember two weeks ago, my red blood cell count was 9.8 (should be 12 to 15)
and so they gave me an Aranesp injection to bring it up?
And they also suggested that I eat things like spinach and beans and liver?
Yum! Which I did.
Last Thursday, when I got Super Chemo, I asked what my red blood cell count
was. My nurse gave me the printout from my labwork. Sort of expected it to
be up -- but the red blood cell count did not go up. The red blood cell
count was 9.7.
Maybe it would have gone further DOWN had I not had the injection.
I have not really noticed any symptoms except on Friday I cut my finger, and
it took a few minutes of applying pressure and elevating my hand above my
head to get it to stop bleeding.
Turns out, I can get this Aranesp injection every three weeks if I need it.
But I can have beans and spinach and liver (yum) more often than that.
I better surf the web and find out what else is good to eat for iron. I
don't want to wear out these favorites. That is what I do: find a new
favorite and eat it too often till I get to the point where I never want to
see or smell it again. Broccoli. Salmon with mashed potatoes and brussels
sprouts. Cream of Wheat, oh it was YEARS before I could eat Cream of Wheat
Oooh, we booked the cruise and started looking at shore excursions! That was
Posted by Karen at 9:13 AM 4 comments:
Thursday, October 1, 2009
Christmas Vacation Approved!
Yahoo, here is what I found out today.
My next Scan Day will probably be November 4. That is the day when we will
decide whether I will add on two extra cycles of chemo and whether I qualify
for the clinical trial of the experimental drug to keep the cancer from
starting to grow again.
Even if I add in the two extra cycles of chemo, I'll be done with chemo on
December 3, and Dr Reidel says that is long enough recovery time to fly at
Christmas. I can go on a cruise! And I will not miss any treatment to to do
If I do qualify for the clinical trial, then super luckily, the clinical
trial is a daily pill that I would administer to myself with minimal side
effects and monitoring that does not need to occur on a weekly basis. So I
can do it while on vacation without putting anything in jeopardy.
Dr Reidel said that there is no strong evidence that the two extra cycles
offer substantial benefit and that he is leaning toward my immediately
starting the clinical trial instead -- if I qualify.
Of course I will certainly do the two extra cycles if he says to, but I will
admit that I would rather be done with chemo after six cycles.
So, this evening Lou and I settled on a Princess cruise! We'll be on the
fabulous new Ruby Princess which has [gasp] a SUSHI restaurant onboard.
Imagine my excitement!
Posted by Karen at 10:54 PM 6 comments:
Hints About the Future
I haven't mentioned any of this to you yet, but last week Dr Reidel gave me
some hints about what the future might hold for me.
I am in the middle of Cycle 5 of Gem/Tax, and we originally planned six
cycles of Gem/Tax followed by another Scan Day. I think that puts Scan Day
on November 5, 2009. Here's where the hints about the future come in, and
they all depend on what we learn on Scan Day:
•If I get significant shrinkage again, and if I can tolerate more chemo, we
will add on two more cycles of Gem/Tax (6 weeks) in an effort to just
totally beat the cancer down and take advantage of how well Gem/Tax is
•If I get significant shrinkage but I can't tolerate more chemo because my
bloodwork is bad or my attitude is bad, we do not add any any more chemo and
instead go to monitoring on a two-month schedule. (What are the chances that
my attitude will be bad?! Zip!)
•Instead of monitoring, there is a chance that I can join a clinical trial
of some drug they are testing to slow the rate of the cancer starting to
grow again. I did not get the drug name. I think Dr Reidel said it is a
weekly pill drug with minimal side effects. I know for sure he said that
they already have eleven patients in this trial. I said ABSOLUTELY YES I am
interested. I want anything they can give me. We'll all just have to pray
that I get the actual drug and not the fricking sugar pill!
•If I do not get significant shrinkage, then I think we go to monitoring or
the clinical trial. I think that you have to show that at least some
improvement occurred between the third-cycle Scan Day and the sixth-cycle
Scan Day to get into the clinical trial.
I am unclear of what happens if I add on two more cycles of chemo -- can I
do the clinical trial after that?
It is totally okay that I do not have all the details at this point. This
was just a preliminary chat about what might happen. I like that because it
gives me time to adjust my thinking.
My big questions for Dr Reidel today involve VACATION PLANS. Lou and I are
desperate to go on vacation. We get that week between Christmas and New
Year's off, and we have been looking at ten-day Southern Caribbean cruises
I want to find out today what the chances are for my being able to fly and
cruise and snorkle and shop and nap in a lounge chair on the Lido Deck with
a good book in my lap... If I am in the clinical trial, can the shipboard
doctor give me the weekly pill? Is it possible to delay the start of the
clinical trial? Should we book a cruise now or wait till Scan Day? Will I
need sunscreen 200 SPF?
We love cruises. We basically check in to a luxury hotel, unpack once, and
wake up every morning in a fabulous new place. We have been on twelve
cruises so far and hope to go on many more, God willing. Our first cruise
was to Alaska in 1997, which was our five-year delayed honeymoon. If you are
interested, you can see pictures from all our cruises on
Posted by Karen at 7:21 AM 1 comment:
QUICK UPDATES FOR OCT
Saturday 10-31-09: Happy Halloween!
Friday 10-30-09: Woke up in pain from the bulging disc. My head was also
ringing. I have to admit I was down in the dumps last evening; tired of not
feeling good. But yesterday was a little better, and I hope today is a
little better too.
Thursday 10-29-09: I guess to lie in bed for two days is not so good for a
Wednesday 10-28-09: Woke up in pain from both the bulging disc and all the
bones in my back. Ate breakfast and went right back to bed. Pathetic! I
would be happier if I had a good book to read. I am suddenly feeling dizzy
and have the Unspeakable Side Effect, so I am headed back to bed. Later!
Tuesday 10-27-09: Dizzy this morning! Darn. Had a migraine after lunch.
Spent the day in bed. Listened to the radio for awhile.
Monday 10-26-09: The low dose Advil regimen is really helping with the
bulging disc! The left hip pain is greatly reduced. I feel pretty good right
now. My ribs ache, my mouth is dry, my feet are numb, but I am NOT tired. I
got a migraine yesterday afternoon, but the Immitrex stopped it in its
tracks. It was amazing.
Sunday 10-25-09: Gosh I feel as though have been sleeping since Super Chemo
on Thursday! I have been waking up at 9:00AM, taking long afternoon naps,
and then crawling into bed completely exhausted at night. In the few hours I
managed to stay awake, I had a lot of laughs with Cindy this weekend! What a
great visit. Cindy drove us around, which was a super treat. Lou and I
dropped Cindy off at the airport just before noon, grocery shopped, and now
we are finally home. I am seriously ready to put my pajamas back on and go
take a nap. Otherwise, I feel good! Just sleepy.
Thursday 10-22-09 Evening Update: Super Chemo went really well. They put me
in a bed instead of a chair, which was just wonderful and comfy. My chemo
was supposed to be at 12:30 but I didn't get called till 3:00 because they
were really busy. I was reading a great book and did not get upset. It is
what it is. Managed to keep ice in my mouth the entire hour of Docetaxel!
Tomorrow is a vacation day, and Cindy arrives.
Thursday 10-22-09: Had a pretty good night's sleep with Ambien to counteract
the 40 ml Decadron I had to take yesterday. (I am taking Ambien 3 nights out
of each chemo cycle, and Lou has control of the bottle, because I have heard
really bad things about sleeping pills.) Slept 6.5 hours; got up when when
Lou's coffee maker started grinding the beans, hoped to bring him a cup in
bed, but he got up too. Feeling pretty good. Time to go make breakfast!
Wednesday 10-21-09: Had to get up early today because Lou has a doctor
appointment. Kind of nice when someone else is seeing the doctor! Started
taking the Decadron today, so could not have my favorite mug of tea with
breakfast. Decaf instant coffee for the next five days because any caffeine
will make me MANIC.
Tuesday 10-20-09: Yesterday I had my three doses of Advil, eight hours
apart, at 10AM, 6PM, and then 2AM. I've been waking up at 2 or 3 in the
morning in pain anyway, so that third dose was no trouble. Today my Advil
schedule is 7:30AM, 3:30PM, and 11:30PM. Feeling pretty darn good!
Monday 10-19-09: Feeling pretty darned good!
Sunday 10-18-09: Slept late again! Did not sleep well, though. Woke up
multiple times in pain from sleeping in the wrong position. There is only
one position where the hip does not hurt, and I can't seem to stay in that
position when I am asleep. Feeling pretty good, otherwise.
Saturday 10-17-09: Slept really late! Lou woke me up at 9:00AM with a cup of
tea in bed. I'm telling you, I'm married to the best guy on the planet. My
hip pain is about half what it was on Thursday. Feeling really great, which
is good because we have a big list of errands to do today.
Friday 10-16-09: MRI today at 11:00AM. I forgot to ask when I will hear the
results! (Have not even had it yet, and I already want the results.) Woke up
pretty early, WIDE AWAKE and feeling good. Got through a bunch of email at
work. I actually got to exchange email in real time with a collegue in
India! What a great way to start the day. My plan is to go to the office
after the MRI.
Thursday 10-15-09: Easy Chemo today!
Wednesday 10-14-09: It is going to be in the mid 50s today! Time to break
out some long sleeves, maybe a cardigan. I wonder how the wig will look with
Monday 10-12-09: Slept till after 8:00AM this morning and woke up with sinus
congestion, sore throat, and hip pain. I didn't post all weekend because my
hip has ached all weekend, and I did not want to post that. Luckily, the
ache goes away when I take Advil and/or Tylenol. This morning I will call my
medical oncologist and report that my hip hurts. (My CyberKnife doctor said
to call him if my hip started to hurt again, but I will start with my
Friday 10-12-09: Had a lot of hip pain last night, which I think must be
from sitting on this uncomfortable wooden chair in my home office all week.
Feel okay and plan to go in to work where I have a nice office chair waiting
Thursday 10-08-09: Today I have the Unspeakable Side Effect, so I am working
Wednesday 10-07-09: Got a migraine last night but Immitrex seemed to work
okay. This morning I feel tired.
Tuesday 10-06-09: Yesterday went downhill fast with dizziness. Gosh at one
point I was sure I was going to hit the floor; I just hung on to an inside
doorway and waited for it to pass. Dr Reidel suggested that it might be
dehydration so I aggressively re-hydrated yesterday and that has helped. So
far today, not feeling like I am gonna pass out!
Monday 10-05-09: All done taking Decardon for this cycle! Looking forward to
a really good night's sleep tonight. Plus I got to drink my regular
caffeinated tea (with Splenda) at breakfast this morning. Have some bone
pain and other yucky side effects this morning, so I am planning to work
from home (in case in gets worse). But I am not tired at all and am looking
forward to putting in a full day's work.
Sunday 10-04-09: Woke up a lot last night. Finally gave up trying to make
myself sleep at 6:00AM. Feel pretty good this morning except ears are
ringing and feet are numb. The bones in my upper back woke me up but Advil
took care of that around 4:00AM.
Saturday 10-03-09: Slept till after 8:00AM this morning and feel very good
so far. I am working remotely this morning; Lou is too, so the house is
pretty quiet. Yesterday I was tired. I had my Neulasta shot and headed home
to collapse on the couch. Really liking the new Flash Forward TV show.
Thursday 10-01-09: Late update: Came home from Super Chemo very happy but
very tired. Dragged around so sleepy and then around 8PM WOKE UP just when I
should have been crawling into bed. I hope I can sleep tonight.
Thursday 10-01-09: Welcome to October! Gosh this year is flying by! I woke
up every 90 minutes last night and finally gave up trying to sleep at
4:30AM. I read Harry Potter book 5 for awhile, puttered around the house,
and then made Lou an awesome Maltby Cafe stype potato/egg/cheese breakfast.
I feel very good and look forward to SUPER CHEMO today.
Posted by Karen at 6:42 AM No comments:
Tuesday, September 29, 2009
There is a pink spiral calendar notebook that lives on the kitchen table.
It's where I keep track of my side effects and solutions and appointments
It's really helpful, mostly because the process of writing down a symptom
and solution makes it so much easier to remember what to do the next time
that same symptom shows up.
And some of the side effects snuck up on me -- I didn't realize what they
were till I looked at the notebook and saw the pattern.
Lately I have been wondering about the impact of expecting certain side
effects to occur. I am not afraid that I can make them happen -- it is more
like, I do not want to waste any time worrying about side effects that could
Yet, there is some value in planning ahead. It is a sort of balancing act,
trying to be ready without worrying.
Here is what I mean. Last time I got Super Chemo, a few days passed and then
I had two migraines and flu-like symptoms and spent 2.5 days in bed. That
was my worst week yet. (The great thing is, my "worst week" was not that
bad! I feel pretty lucky that chemo has not been very difficult at all and
yet is killing the cancer. Thank God!)
Anyway, this Thursday, I am getting Super Chemo again. So, next Monday
through Wednesday, I might feel lousy again. I have noticed that I am not
agreeing to do anything extra (important meetings at work, dinner plans with
friends) on those particular days.
I think it is smart to be ready in case those days are not good.
I just don't want to worry about it from now till then.
So if I catch myself worrying, I will just remind myself about my
Significant Shrinkage and let myself be flooded with the inevitable JOY and
RESOLVE that comes every time I visualize the tumors shrinking and smoking
and whimpering under the onslaught of the chemo.
I am reminded of: "Hope for the best, plan for the worst, and expect
Posted by Karen at 8:55 AM 4 comments:
Friday, September 25, 2009
Low Red Blood Cell Count
Nurse Amy, whom I think is awesome, was my nurse yesterday.
I got Easy Chemo as planned, but in addition I also got an Aranesp injection
to boost my red blood cell (hemoglobin) count. My HGB was 9.8 when it should
be 12 to 15.5. When Nurse Amy came over with the injection, I thought she
was trying to give me the Neulasta injection, which should not happen till
next Friday. She explained that we need to boost my red blood cell count.
She also gave me a printout of my lab results, which was super cool not that
I know how to interpret the 30+ things on the printout.
Aranesp comes with a pretty nice handout. Nurse Amy also talked about how I
ought to be eating things that will boost my iron. So on the way home I
stopped at a Harris Teeter and got liver. I really like liver!
I have seen Dr Reidel eleven times. One time was when we met for my "second
opinion" to review my case and switch me over to Duke. Ten times were for
chemo; and eight of those times, I first got a nice long satisfying chat
with some random oncology resident who was assisting him. These residents
asked a million questions and recorded my answers and all my side effects
and passed along the high points to the doctor. (I never realized till now
how satisfying it is when someone writes down everything you say!) I know
either they or he filtered my info because Dr Reidel would later come in and
focus on the important one every week.
The last two visits, however, there has been no resident to chat with. I
really miss that! And Dr Reidel does not want to chat. He asks for what's
most pressing. As he left the exam room yesterday, I felt vaguely
disappointed and unfulfilled. It wasn't till much later that I realized how
much I miss his parade of residents.
Ho, but later on, I got plenty of chatting! (People always say be careful
what you wish for.) In the treatment room, I sat next to a lovely couple
(Chris and Eva ) and chatted with them almost the entire time I was there.
He was a "biological" patient -- not a chemo patient -- and she was
crocheting and keeping him company. They live like three miles from me! They
sure helped make the time fly by.
Usually, my neighbors in the treatment room simply nod a friendly hello and
then ignore me for the rest of the time. That is okay, too, because I bring
a book, and my rosary, and my Tetris and just totally entertain myself.
Posted by Karen at 5:59 AM 7 comments:
Sunday, September 20, 2009
Go Take a Walk
One of the handouts from Duke says if you are feeling really tired, the best
thing to do is to get some exercise every day, and you will start to feel
So, for the last five days, I have made myself take at least a short walk
with Samantha the Golden Retriever. My house is at the bottom of a hill
where two roads sort of dead end into each other, so there is this perfect
short walk where I go up the hill, across a flat top part, and then back
down the hill to my house in one loop. It's just one block, but it is
I sort of have to drag myself up the hill. My legs are so tired, right from
the start. It wasn't like this before chemo. I liked walking up the hill
It's an interesting walk because there are two houses under construction,
and that is fun to watch. Although, they have both progressed to the point
where most of the outside seems to be done and the interesting work is all
going on unseen inside.
There are still a lot of empty lots for sale in the neighborhood. Those lots
are all overgrown and fascinating to Samantha. So we both have a good time.
Plus, if Sam poops in a wild lot, I don't have to pick it up.
Plus, my neighbors are all really nice. A couple of weeks ago, I came home
with a huge bag of tomatoes. Awesome.
Today Lou took Samantha for the short one-block loop, then dropped her off
at the house and then we went for a longer walk up by the driving range and
the tennis courts and pool. The pool closes after today, I think. We still
have never gone swimming there. Next summer for sure.
We had to stop a lot during the walk either because I was tired or out of
breath. At one point, Lou suggested that I STOP TALKING because we were
halfway up a huge hill, I was gasping for breath, and I was only halfway
through some story about work.
Posted by Karen at 3:21 PM 5 comments:
Thursday, September 17, 2009
Migraine Experiment Continues
Since 2004, I had had maybe four to six migraines per year. They are not
that bad, lots of sparkly lights, bad headache, difficulty speaking for
about an hour, waste of a day. From what I have heard, that is not too bad.
But during chemo, yikes! That number has jumped. (I have gotten a migraine
on both of the last two days.) So my primary care physician gave me a
selection of migraine drug samples to see whether we could find one where I
can stay upright and functional instead of having to go to sleep.
All of these drugs work different for different people, so the point is to
find one that works for me.
Excedrin Migraine: This is what I have always taken at the first sign of
blank spots. I basically rush home and go to sleep for a few hours to escape
the pain, but then I am okay.
Treximet: I remember that I was not really impressed; it did not seem to be
any better than Excedrin. I definitely went to sleep, but I am not sure if I
tried to stay awake. Might be a good idea to try Treximet once more and take
Relpax: Got rid of the sparkly lights very fast, but about 45 minutes into
the headache, my head HURT a lot and I was actually nauseated. (Months of
chemo, and it takes this migraine to nauseate me!) Almost exactly two hours
into the headache, the sparkly lights came back. So I ended up in bed after
Frova: The sparkly lights lasted an extra long time and made it impossible
to see anything. I never could have driven the car like that. However, for a
few hours, I felt pretty good, minor headache only, able to watch TV. But
five hours later, the entire headache came back. Sparkly lights followed by
lots of pain. I took a second pill. I ended up in bed to escape the pain.
Then later I was groggy.
Immitrex: The sparkly lights were very short lived. The headache pain was
moderate. I could not read. It was best if I went to sleep. I could not have
stayed at work through the migraine.
Maxalt: The sparkly lights lasted for the usual 20 minutes, but then no
headache followed! I was almost perectly fine. I had a MINOR headache (more
like a hint of a headache). I definitely could have stayed at work!
Fantastic! No wonder this stuff is so expensive. (Updated June 2010)
Posted by Karen at 8:26 AM 4 comments:
Monday, September 14, 2009
Cars from All Over
Because I got the Super Chemo on Friday, today I had to run up to Duke for
my Neulasta shot.
Whenever I pull into the parking garage there, I am surprised at the license
plates on the other cars: Massachusetts, California, Virginia, West
Virginia, Georgia, I forget the rest. Duke is an amazing place and people
come from all over to get care there. I feel so glad that I switched over. I
have these peace of mind that I am in the right place, being part of the
Bone and Soft Tissue Sarcoma Center.
I mentioned to today's nurse that last time around, the syringe got dropped,
and she laughed and said that they gave that other nurse such a hard time
for a week afterward! Nothing got dropped today. But no tickling and no
pinching, either. It didn't sting till she pulled it out though. Strange.
I should be washing my wig tonight but I am just not really up to the effort
tonight. If you see me tomorrow, try not to notice the messy hair.
I haven't mentioned it, but I have been enjoying reading The Age of Wonder.
I am in the middle of the chapter about how balloonists got started in the
mid 1700s in France with paper or silk balloons filled with hot air or
hydrogen. Everyone was so excited about it, but the English were skeptical
and called it the French Folly. Benjamin Franklin worried that there might
be military applications, so that troops could float over and drop down on
the enemy or view their encampments... so interesting.
Today I had my last dose of Decadron, so I am hoping for a deep
uninterrupted sleep tonight and the thrill of a real cup of tea tomorrow
Rosary update: I have completed one novena to thank Mary for my significant
shrinkage, and I am a couple days into one to thank St. Jude. After that, it
is St. Peregrine's turn and then I will be complete.
Posted by Karen at 7:57 PM 3 comments:
Friday, September 11, 2009
Nothing to Worry About
Yesterday when I saw Dr Reidel, I asked about the other medical conditions
that were "noted" in the preliminary report from the CT Scan. I had googled
each one, and to me they sound awful. I admit that I have kept these other
things to myself all week because I wanted us all to bask in the golden glow
of Significant Shrinkage. Didn't want anything to tarnish that joyous news.
I'll tall you right up front that Dr Reidel says that I have nothing to
worry about for any of these medical conditions. I'm just posting them here
for full disclosure ;^)
Here are the other medical conditions noted in the preliminary report:
•Small pericardial effusion (a very little bit of fluid collecting around
•Diffuse hepatic steatosis (fatty liver)
•Postoperative changes of ventral hernia repair (what's up with my
incisional hernia repair?)
But the doctor said those are "nothing to worry about." Basically, when they
review the scan, they have to note everything they see but do not include
any kind of value judgement or attempt to put it into context (like, "This
is expected during chemo" or "Whoa Nelly what the heck is that doing
there?!") I'm cool with that. [Patsy, are you cool with that?]
Plus I have had hip pain in my right hip for like two weeks. (I had hip pain
in my left hip for months and did not even think to mention it and lo it was
a tumor in my psoas muscle! So now I mention everything that hurts or
twinges.) But when Dr Reidel checked the final report from the CT Scan,
there is nothing happening there. He suggested that it might be "referred
pain" from the arthritic changes in my back. The hot tub does make the right
hip pain go away.
Posted by Karen at 7:58 AM 3 comments:
Wednesday, September 9, 2009
Vitamin D Deficiency
This spring, everyone in my vanpool was talking about being tested for
Vitamin D deficiency. Nobody spends any time out in the sun anymore, and
when we do, we are all slathered up with sunblock, so people just aren't
producing Vitamin D the way they used to...
The vanpoolers who were deficient said how great they felt after they
started taking Vitamin D. Mostly they felt energized and cheerful. Who
doesn't want to feel more energized and cheerful? Especially during chemo!
So in mid-August when I went to my primary care physician for migraine drugs
and antibiotics for my head, I also asked if he would test me for Vitamin D
Deficiency. The doctor and nurse both chuckled and said that practically
everyone who comes in wants to be tested for that. It is the new popular
health issue to worry about. The doctor said he would be happy to test me,
but that most people who ask end up not having a deficiency. I guess if you
are actually deficient, you show up complaining about the symptoms, and the
doctor suggests that you get tested for this deficiency.
Well, turns out I am deficient. The results showed me scoring like a 16.8
when the normal range is 32 to 100. So I got a prescription for 50,000 IU of
Vitamin D to be taken weekly for 12 weeks. When I filled the prescription,
the bottle contained six pills, which seemed so strange to the clerk and I
that we checked with the pharmacist. Six pills was correct because this is
something you take once a week.
I have been taking it for five weeks now. I know this because I was filling
up my pill box and saw that I need to refill the prescription.
That started me wondering whether I feel more energized & cheerful. Ten
weeks into the chemo, I would have to say I have less energy than before
chemo started ;^) Probably, I would be even less energized & cheerful than I
am today if I were not taking it.
I am naturally pretty cheerful and upbeat anyway. If I got any more
cheerful, you might start to wonder if it were artificially induced. But it
isn't. Unless you count chocolate.
Posted by Karen at 8:22 AM 4 comments:
Thursday, September 3, 2009
Let's all do the happy dance!
The preliminary report on today's CT Scan shows "significant shrinkage" in
the tumors, which is absolutely the best news that I could have hoped for
(short of a miraculous total disappearance of the cancer but let's not get
Here are some details from the preliminary report:
•There are no new nodules in the lungs!
•The 1.3cm lung nodule shrank to 0.9cm.
•The 0.9cm lung nodule shrank to .5 cm.
•The 6mm lung nodule shrank to 2mm. (There are six nodules but they only
measured three representative ones.)
•The mysterious 4cm x 4cm "solid mass" in the pancreas shrank to 3.0cm x
•The 4cm tumor in the psoas muscle did NOT shrink. It stayed the same. I am
thinking it is so messed up from the Cyber Knife radiation that even this
fabulous chemo cannot make it shrink. Oooh, and there are NO new bony
abnormalities where the tumor is eating into L4.
Yahoo! Such fabulous news! So we stay the course. I do three more cycles of
Gem/Tax, which will take nine weeks. Then we do another scan.
Knowing that there has been significant shrinkage makes it so much easier to
get the chemo and laugh at the side effects!
Thanks everyone for all your prayers and good thoughts and comments and
I said the rosary every day for the last 15 days asking for help. I also
prayed to St. Jude, the patron saint for lost causes, and St. Peregrine, the
patron saint for cancer survivors. And of course today I started a novena to
thank Jesus and Mary for their help.
Sushi tomorrow night!
Posted by Karen at 8:02 PM
Thursday, September 3, 2009
Today is Scan Day!
Here is the plan:
7:00AM Karen and Lou leave the house
9:30AM CT Scan with contrast
10:40AM See Dr Reidel, get results
Check back later for the results.
Posted by Karen at 6:57 AM 9 comments:
QUICK UPDATES FOR SEPT
Wednesday 9-30-09: I'm taking Decadron today in preparation for Super Chemo
tomorrow. I slept 8.5 hours and feel fine this morning.
Tuesday 9-29-09: Today it will be a beautiful Fall day in the low 70s. My
sore throat is gone! I wonder how my red blood cell count is doing?
Monday 9-28-09: From the head cold: still have a sore throat but feel less
miserable than yesterday. From the chemo: the bones in my shoulders and
upper back hurt.
Sunday 9-27-09: Miserable head cold.
Saturday 9-26-09: Went for a 2 mile walk this morning! Had to stop and rest
a lot, but it was a great walk. Feeling good today. Off to the grocery store
and coffee shop now...
Friday 9-25-09: Wide awake after seven solid hours of sleep. Sore throat
again. Took an Airborne fizzy pill this morning.
Thursday 9-24-09: Woke up with some kind of cold! Sore throat, stuffed up,
blah. But today is Easy Chemo Day and I am going to Duke to kill some cancer
cells even if I have to bring a box of tissues with me. Oooh maybe they are
going to make me wear a mask!
Wednesday 9-23-09: Maybe 8 hours of sleep is not enough! Feel kind of achy
with upset stomach this morning. But I am ironing my khakis and headed for
Monday 9-21-09: Plan to take the vanpool today, so I am up early. Feel
pretty good, considering that it is 5:40AM on a Monday.
Sunday 9-20-09: Feel good again today. Went for a long walk with Lou. Had to
stop often to rest, but it was an awesome walk.
Saturday 9-19-09: Feel good again today.
Friday 9-18-09: Woke up feeling totally fine. Yahoo!
Thursday 9-17-09: Still have flu-like symptoms but no migraine yet!
Hope to work from home today.
Wednesday 9-16-09: Evening Update: It is just after 5:00PM and I am finally
feeling almost human. I go another migraine this morning! And another day of
flu-like symptoms. If we stick to the pattern, I can expect a happy healthy
day tomorrow though.
Tuesday 9-15-09 Afternoon Update: Gosh, around 8:00AM my day went to hell!
Got a migraine right after I left for the car dealership. I am still trying
a variety of migraine drugs, so this time it was Relpax. Took it in the car
and foolishly kept going; not such a great plan. Got rid of the sparkly
lights pretty quick, but left me with a terrible headache, worst yet. I
successfully got the car serviced. Finally got home and went to sleep from
about 11:00Am to 1:30PM. Woke up with migraine gone but replaced with achy
exhausted flu-like chemo side effects. I decided to spend the day in bed. So
tired I can't sleep or read or watch TV. Pathetic! But thank God no barfing!
Tuesday 9-15-09: Woke up at 3:30AM! Feel pretty darned good however. Worked
for three hours, which is nice.
Monday 9-14-09 Evening: Tired today, with one numb foot -- and aren't those
lovely side effects?! I feel so lucky. Based on the previous cycle, Tuesday
and Wednesday of this week might be tougher. Tonight I had a Healing Touch
appointment with Amelia and left feeling FABULOUS.
Sunday 9-13-09: Feel fine so far but going to try to take it easy today. I
do want to accomplish two things: grocery shop this morning, and go to
dinner with a big group from the neighborhood tonight.
Saturday 9-12-09 Late Morning: Had a busy day planned today, but we have
already had to cancel the BBQ lunch & live music at Big Boss with Woody and
Meredyth because I am too tired. Still planning to visit the lovely couple
who lease our old house.
Saturday 9-12-09 Early morning: Jumped in the hot tub this morning and
enjoyed the 101 degree heat and blue skies overhead. Busy day planned today.
Visiting the lovely couple who lease our old house, maybe meeting a new baby
in the old neighborhood, than heading out to Big Boss for BBQ lunch & live
music with Woody and Meredyth. Tonight I'll go for pizza with my pals in
Holly Springs. Feeling good! But ready to bail out of our plans if I start
to feel wonky...
Friday 9-11-09: I cannot write that date without feeling sad about what
happened but proud that we have thwarted further attacks within our borders.
I get Super Chemo today instead of yesterday because the Monday holiday
threw off the regular schedule. Let's kill more cancer cells today! Decadron
woke me up at 4:30AM filled with energy. I saw that Lou had slipped away to
the guest room to escape my snoring. That made me feel bad so I went to the
Harris Teeter at 5:00AM to pick up smoked salmon to go on the poor guy's
bagel for breakfast today. [I tell you the good things I do for him but
hardly ever mention how I drive him insane.] I am having SUSHI LUNCH with
the fabulous Deborah A !!! Sushi alone is a thrill, but sushi and time to
chat with Deborah is a super thrill. I'll tell ya, I am a lucky lucky woman.
Thursday 9-10-09 Evening: I was super busy with urgent deadlines from 9:00
to 1:00 at work, which I perversely enjoy. Then I headed to Duke for my
regular labwork and doctor appointment which occurs before chemo. (Super
Chemo tomorrow.) I crashed at 3:00PM and struggled to stay awake in the
waiting room because I was afraid I would miss my name being called. Once I
got into the exam room, I stretched out on the exam table for a nap and was
just about to drop off when Dr R arrived. All is well! Planning to crawl
into bed at 7PM tonight when Lou leaves for poker with the guys.
Wednesday 09-09-09 Night: I got a flu shot this morning and got to work
pretty late, feeling tired and cranky. But I got my second wind after lunch,
started feeling wonderful, and worked till 8:00PM. What an awesome day!
Wednesday 09-09-09 Morning: INTERESTING DATE TODAY! I woke up dreaming I was
Kevin Costner's character with the webbed feet in Waterworld. My feet were
stinging and burning. (I really disliked that movie.) Slept late (till
7:30AM) in the hope that I will not crash at 3:00PM again. I have an
important meeting at 3:30PM that I need to be able to think during ;^)
Tuesday 9-8-09 Evening: I crashed at 3:00PM, left the office at 4:00PM, and
then slept till about 6:30PM and now feel just fine. I woke up just in time
for a wonderful chicken dinner from Carol and Linda, including a fresh peach
tart that blew us away. Then we went for a walk and finally met our newest
neighbors up the street.
Monday 9-7-09: Happy Labor Day! I am shocked that it is Labor Day already.
What happened to my summer?! Oh yeah, I was busy getting radiation and
chemo. April seems like a million years ago. So much has happened since
Chemo Nurse Ann called and said, "There is a spot on your x-ray they are not
happy with." But we have had some fun this summer. We took trips to both
Charleston, SC, and to Kitty Hawk, NC.
Sunday 9-6-09: Slept till almost 9:00AM! Feeling pretty good. Bottoms of my
feet are numb. Went for a short walk with Lou and Sam. Planning to go to the
Bavarian Brathaus this evening with John and Pat. Still feeling so lucky and
happy and relieved at the good news.
Saturday 9-5-09: Got up at 8:00AM and found Lou in the hot tub. What a great
way to start the day. Lots of golfers out early today. At one point there
were four golf carts piled up at the 5th tee. Went for a short walk with Lou
and Sam, dropped off Sam, and then walked out to the front gate of the
neighborhood. Got to do something to combat the weight gain from Decadron. I
have put on 10 pounds in 10 weeks of chemo. Darn. But who can complain since
it is working so good! :^)
Friday 9-4-09: Wow, slept great, feel great, nothing more therapeutic than
fabulous news. I must not have been snoring because Lou did not slip away to
the guest room in the middle of the night to escape the racket. Yesterday we
were trapped at Duke because waiting for both the CT Scan and the Dr R
appointment took forever, so we had to cancel our generous dinner delivery
from our neighbors Carol and Linda because we did not think we would be home
in time and we did not want to be worrying about them all afternoon. Last
night I had some bathroom trouble but caught it early and feel fine today. I
have not ironed in like two weeks and thus have nothing to wear to work. Lou
is taking today as a vacation day.
Thursday 9-3-09 evening: SCAN SHOWS SIGNIFICANT SHRINKAGE! Later tonight I
will post more details. Thanks everyone for your prayers and good thoughts!
Thursday 9-3-09 morning: Happy Birthday Mom! I have the best mother in the
world, and today is her special day. I just hope her present arrives in the
Posted by Karen at 6:30 AM No comments:
Tuesday, August 25, 2009
Nurse Dropped the $4000 Syringe!
Every Friday, after Super Chemo Day, I have been getting a regular Neulasta
injection. This injection boosts white blood cell production. It is pretty
great and I guess it is helping me feel better. I do not know how much I am
being charged for this, but my pharmacist at Rite Aid said the injection
"retails" for almost $4000.
In 2007, they used to send me home with the syringe so I could give myself
the injection the day after Super Chemo. I used to shoot myself in my upper
thigh because it was easy to reach. There is a lot of liquid in the syringe,
it stings a little, and you have to inject it slowly. It is amazing what you
can do when you have to.
But now, I just drive back to Duke the day after Super Chemo, and a nurse
gives me the injection in my upper arm. So nice! The nurses tend to either
tickle or pinch right next to the injection site to distract during the
injection (I guess it confuses the nerves and disrupts their ability to send
OUCH signals to your brain). Tickling works for me -- I cannot feel a thing
except for the tickling! The pinching does not do anything for me. (The
pinchers don't want to believe that, however.)
So this past Friday, a very nice pregnant nurse is about to give me the
injection when she drops the syringe on the floor!
We both gasp and stare at each other.
"I dropped it!" she says.
"That's like $4000!" I exclaim, "We can't use it?"
She laughs. I guess that's a silly question. No five second rule in the
She jokes that they won't charge me, and they can take it out of her
Then she orders another one. When it arrives, she is nervous. Another nurse
comes over to offer moral support, and I lean over in the chair so that if
the syringe does fall, it will fall into the chair and onto me and we can
save it. But the injection goes without a hitch!
Except of course that she is a pincher, not a tickler.
Posted by Karen at 5:56 AM 8 comments:
Saturday, August 22, 2009
Third Super Chemo Day Report
I was pretty motivated to get to Duke and get my chemo and kill some cancer,
because this was my last chance to make some progress before Scan Day on
So I hit the road right on time armed with my LIST OF QUESTIONS and handheld
Tetris game and novel and small bag of used books to abandon there for other
patients. Oh, and wearing a awesome pink Boston Red Sox baseball cap from
Patsy and Omer (instead of my wig) because if I cannot show up all bald at
the clinic then that is just wrong.
But the traffic! 40 was a mess and I eventually had to call over to Duke to
let them know I would be 30 minutes late. They were very nice about it on
My list of questions:
•Report that I had completely forgotten to tell them that the tumor in my
psoas muscle had started sending out twinges in the last week of July.
(There had been no feeling at all from that tumor since the second day of
fabulous Cyber Knife raditiation surgery at the start of June.) The twinges
were mild but frequent for a few days and now are extremely infrequent but
do occur. Nothing so bad that requires an Advil, just a reminder that it
•Wonder if it is reasonable to think that the twinges are a sign that the
chemo is messing with that tumor and making it unhappy. That theory fills me
•Report that I have had mild headaches almost every day right behind my eyes
for the last two weeks (separate from the migraines). The underlying
question here is of course, do I now have a brain tumor?!
Dr Reidel smiled and said that it is totally okay to have my theory that the
twinges mean the tumor is shrinking, but that we will find out on Scan Day
what is going on. He did explain that there is a phenomenon called Radiation
Recall, where a patient who has had radiation followed by chemotherapy
experiences a sort of "repeat" of the radiation-induced inflammation and
side effects in the irradiated area. Interesting.
We talked about my mild headaches for quite awhile. They sit right behind my
eyes, which reminded me that a month ago my software at work was "upgraded"
and is now in a smaller font and very hard for me to read and cannot be
adjusted, gosh darn it. I now have to tilt my head to read the screen using
the lowest band in my fancy progressive eyeglasses. That sounds like a
recipe for eye strain, eh? So Dr Reidel suggested that I go to the eye
doctor first to rule that out before we start worrying that the cancer has
moved into my head.
The rest of my Super Chemo Day was pleasant and uneventful, so I want to
jump right ahead to Friday and my visit to the eye doctor! There was a flyer
on the bulletin board at work for a specialists in dealing with computer
vision trouble. Plus they offer big discounts to SAS employees! So I called
at lunchtime and they got me right in. I had a pretty thorough eye exam.
It turns out I have a perfect storm of eye trouble going on that is probably
causing the headaches:
•My eyes are extremely dry! I have already talked about how my mouth is
really dry from the Tax chemo. So it makes sense that my eyes are dry too.
The doctor gave me a couple of boxes of preservative free single usage
moisture drops and told me to use them often. Already my eyes feel much
better, and I did not wake up with a mild headache like I have every
•My sinuses are still percolating with something, and that always gives me a
•I am 44 which is a time when my prescription is potentially changing for
the worst. I definitely could use a special pair of glasses that will give
me the perfect focus for looking at my two computer monitors (which sit 24
inches from my eyes).
•The software upgrade has probably been causing eye strain for the entire
month and having a cumulative effect. For the last two weeks, it has been
just ridiculous squinting at the text on the screen.
So I ordered a new pair of glasses just to wear at the computer, and they'll
be in next Friday. I was shameless in searching for a cheap frame! Why spend
$275 for this lovely Coach frame with PINK accents for a pair of glasses I
am supposed to wear only while sitting in front of my computer! I actually
found a nice looking, sturdy frame for $120.
It will be strange to have two pairs of glasses to swap back and forth
between. Since like the first grade when I got my first glasses that showed
me the miracle of what you all could see, I basically put them on in the
morning and take them off at night. Although, once I hit 40, I had to spend
a lot of time lifting them out of the way to read any small print (till I
got the progressive lenses).
Okay, Lou needs breakfast!
Posted by Karen at 7:38 AM 4 comments:
Burping Episode Averted
Voluminous and yet neutral tasting burps woke me up around 4:00AM on either
Wednesday or Thursday morning. What a strange way to wake up!
(Almost as strange as when you wake up and your throat hurts and you realize
that you have just screamed your lungs out because of some nightmare that
you cannot even remember and your poor husband is about to have a heart
attack in bed next to you. But that's another story. And more proof that
marriage to me has been such an adventure.)
I was all cuddled under the covers and so sleepy and it took me a awhile to
realize that this had to be the start of the evil diesel truck burping
(worst side effect ever). It didn't taste terrible yet, but soon it would
start to nauseate me and anyone in my immediate vicinity.
So I went out to the kitchen, took my regular morning OTC Prilosec, drank an
entire can of Fresca, and went back to sleep for two hours till my alarm
woke me up. The burps were gone, thank God and thank the unknown oncology
resident on call who gave me this rememdy over the phone in 2007.
Posted by Karen at 7:17 AM No comments:
Wednesday, August 19, 2009
Forgot to Come Home From Work
I LOVE MY JOB!
I work at the best company in the world. I have great health insurance and
about as much job security as could be expected. Everyone has been
supportive and kind and yet just pile on the work in a wonderful way to keep
I also work with the best people in the world, the fricking smartest and fun
Plus I love what I do, which is write software documentation, and talk to
software engineers, and learn new stuff all the time.
There are some days when I am totally enjoying myself at work trying to
figure out the best way to describe something, and I lose all track of time
and just keep writing and thinking and rewriting... then Lou calls because
it's late and I exclaim, "Oh no, I forgot to come home!"
Now, I also totally love Lou and my home and Samantha the Golden Retriever,
so don't think for a minute I'm staying late at work to avoid coming home.
Not the case.
I guess I am just telling you how awesomely lucky I have been as a person. I
have a wonderful family, have a likeable personality, loved school, got
directed to a fabulous career in technical writing, met an amazing guy, been
married for 17 years, went on many fabulous vacations, and made a lot of
My life has been blessed!
But a lot of that is attitude, because there is also a bunch of bad stuff
that I have to either deal with or just accept as appropropriate. Like, I
have had a bunch of personal struggles that we don't need to go into here. I
wish I weren't overweight. Loved ones have died, and other loved ones are
very ill right now. My best friend Tinalynne lives 2000+ miles away. I
strongly dislike the document processing tool I use every day at work. I
wish more than anything we could sell our other house instead of trying to
rent it. I have cancer again. And on bad days I worry that I won't be here
in the future for Lou and my parents and Tinalynne. But everybody could come
up with a list like that! And nobody has a guarantee that they will be here
in the future for their loved ones; anybody could have a soda machine fall
on them tomorrow.
Posted by Karen at 7:41 PM 7 comments:
Saturday, August 15, 2009
Lions and Tigers and Bears, Oh My!
A friend at work, Jonathan Whittington, recently went to Africa on vacation
and brought back about a million photos. I was looking at them at work (gosh
I love my job) and found three that totally spoke to me about this whole
This is life before finding out that the cancer had come back. Nothing but
adventure and good times ahead.
But life seemed to come to a complete screeching halt with the diagnosis
that the cancer had come back. I think it took eight weeks to get through
all the tests and false starts for lung surgery before we nailed down how
bad it was and what we were going to do about it.
And this is where I am now, getting chemo, making progress, but not quite
feeling safe yet.
I am hoping that after the CT scan on September 3, the sun will come up and
I'll find that the lions are further away from the jeep!
Posted by Karen at 1:19 PM 11 comments:
Friday, August 14, 2009
Should Always Bring a List
Experts always advise you to bring a list of questions to your doctor's
office. I usually do, but yesterday I forgot. I was able to report most of
my symptoms and ask most of my questions -- but I totally forgot to report
the twinges from the tumor in my psoas muscle and forgot to ask if he thinks
that means the chemo is helping kill it. Darn!
[But on Tuesday I did mention my theory to my primary care physician about
how the twinges might be the chemo pestering the tumor. He agree and
suggested strongly that I continue all positive visualizations like that,
where the chemo droplets are zooming around inside me beating up all the
cancer cells they find.]
Next Thursday, I'm bringing a list.
What threw me off was our discussion of my feet. I have some numbness and
some pain in my feet right now. Does not keep me awake at night. Does not
cause me to fall down. To me, it is no big deal, not worth $60 for Neuragen
at this point. (But the Neuragen looks awesome and I would buy it if I felt
I needed it.)
But the doctor is concerned because it is early to be having these side
effects and we can expect them to get worse. He says that we could try
Lyrica (prescription drug) if it gets to the point where it is bothering me.
He also says there could eventually come a point when I get a rock in my
shoe and I can't feel it and it tears up my foot which would be nasty if my
platelets were low and could not clot... or when the foot numbness makes it
so that my brain doesn't get accurate info about the terrain I am walking on
and so I trip. If that stuff starts to happen, he would want to reduce the
dose of Tax or take me off completely and replace it with something else.
Inside my head, at this point, I am thinking "Not going to report these any
more neuropathy symptoms. Better keep my mouth shut. Want to keep taking the
Gem/Tax, the gold standard for leiomyosarcoma! Want to be in that 40% group
that gets significant shrinkage!"
I wonder if any of that showed on my face. Lou says I am like an open book,
very easy to read, like a baby!
Finally, we also talked about the cluster of migraines I have been having,
and whether they are connected to the chemo. The other doctor who was
sitting in (a "fellow" in an advanced cancer program) suggested that the
migraines could be connected to being dehydrated. I did get dehydrated last
week and did have two migraines last week. So I am drinking more and
carrying around my sample of Trexmet.
The Plan for the Scan:
On my next Good Chemo day, I will have labs as usual, have a CT Scan with
contrast from neck to pelvis, meet with the doctor, get the results, and
decide whether to go ahead with GEM/TAX regimen or switch to some other
That will be a LONG DAY, Dr Reidel warns.
It will also be an emotional day, Karen warns:
•If we see shrinkage: Joy and Dancing and Relief!
•If we see stay-the-same-sizeage: Happiness and Relief!
•If we see growth: Fear and Regret followed quickly by Renewed Determination
and Eagerness to hear about the new plan, the new chemo. New chemo could be
like a new adventure. There haven't been many big surprises with Gem/Tax;
been there, done that.
But we have weeks to go before SCAN DAY.
Oh gosh, the actual date for SCAN DAT is September 3, which is my mother's
birthday. Do ya think maybe the universe could give us some shrinkage for
Patsy's birthday?! (The universe usually just ponies up a gift card to
Barnes and Noble.)
Posted by Karen at 8:08 AM 4 comments:
Wednesday, August 12, 2009
Antibiotics for My Head
I saw my excellent primary care physician yesterday to get a prescription
for migraines. Over-the-counter Excedrin Migraine works pretty well, but I
do have to rush home and go to sleep for a few hours, cannot read, cannot
watch TV. That's fine when I am having one migraine per quarter, but lately
I have had them a lot more frequently. (I did have a cluster of 6 migraines
in 2007 near the start of the chemo so if history repeats itself I have 3
more to go.)
So I got a sample of Treximet to try. Of course, maybe this is like the time
I bought an umbrella and it didn't rain for weeks. It would be totally fine
with me if carrying the Treximet around in my pocket wards off all
Anyway, after we're done talking about migraines, my doctor asks, "So what
is going on with your head?"
My scalp is covered with this nasty painful leaky acne rash. It looks just
awful. (I had taken off my hat in the examination room.) So he put me on
antibiotics, yahoo! Let's hope it clears up soon as I can go back to being a
redhead. I have not been able to put the wig on since Friday. Instead, I
have been wearing a hat.
Being bald with a hat draws a lot more attention than having hair, even fake
hair. I find that I prefer not getting that attention. That sort of
surprised me because I'll admit I kind of enjoyed the chemo pity in 2007;
clerks in stores sure were nice to me.
Don't want no chemo pity this time!
Posted by Karen at 8:17 AM 2 comments:
Saturday, August 8, 2009
Remedies for Gem/Tax Side Effects
Here is the list of what I am doing to deal with Gemcitabine (Gemzar) and
Taxotere (Docetaxel) side effects. If you know about more side effects
and/or solutions, send me email or add a comment so maybe this will become a
helpful and complete list over time...
I tried to arrange the symptoms by grossness -- so if you get grossed out,
do not go on to the next item in the list!
Fingernails and Toenails
In 2007, the nurses told me that there is a chance that your nails turn
black and fall off on this chemo. And I met a woman in teh treatment room to
whom that actually happened! The solution was to paint my nails with Tea
Tree Oil every day. It worked in 2007 -- my nails developed ridges but never
Well, I have to admit that this second time around I got complacent and
stopped being rigorous about using the tea tree oil. Around the fourth or
fifth cycle, a couple of my fingernails started to detact from my nail bed!
It looked like the white part of the nail (the tip) was getting larger and
deeper. The nails did not turn black or smell funny, but there was a lot of
white grit under them.
I surfed the web and found that it is probably a common fungal infection. I
sent away for "Elon Dual Defense Anti-Fungal Formula" because it was
recommended on the fungus website. Well, that stuff works great! I saw
improvement after just a couple of days; the white part of the nails are
shrinking back to normal. The nails that have shown the most improvement are
the ones that had just started to detach. The one nail that had been
detaching for weeks has improved too but at a slower rate. The medicine is
stinky stuff, but who cares. 1-800-414-ELON
I am taking a B6 pill every morning, but it does not seem to be helping. The
bottoms of my feet are numb -- and they actually hurt as though I am walking
on sandpaper. Maybe I am not taking enough B6?
Doane suggested Neuragen which is an over-the-counter topical medicine for
nerve pain, but I tried two local drug stores and have not found it yet.
Costs like $60 but I got a $5 coupon online from http://www.neuragen.com/. I
will probably start calling around to see who carries it, when the pain gets
a little worse.
My medical oncologist said that he would write me a prescription for Lyrica
as soon as I tell him that the pain is really bothering me. It might work;
it is a good starting point.
My mouth really dried up (no saliva) after I got the Gem/Tax together. (This
did not happen to me in 2007, but it is happening this time.)
This is a side effect of the Tax. The first time, I did not realize that it
was going to get so bad. What happened is that my entire mouth got really
dry and uncomfortable. My snoring increased a lot too. My ability to taste
certain flavors was impacted. My tongue turned a completely freakish WHITE
color (although it was not thrush) and I panicked and brushed really hard
trying to scrub away the white and caused a lot more pain and discomfort, so
do not brush hard. Be very gentle.
The doctor gave me prescription Magic Mouthwash which helped to numb my
mouth and keep thrush from forming.
The best solution is that now for the hour that I get to Tax, I try to keep
a mouth full of ice chips. The ice chips constrict the blood vessels so
while the chemo is circulating, I reduce the amount of chemo circulating in
my mouth tissues.
I wish they had popsiscles in the treatment room! Or a freezer where I could
keep a couple of popsicles that I bring from home.
The worst thing I remember from taking Gem/Tax in 2007 was burping what
tasted and smelled like truck exhaust. It happened only a couple of times.
The burping would start first thing in the morning and last all day, making
me completely nauseated -- nothing could make that nausea go away.
Plus, I stunk up the room! Even Lou was grossed out.
Some oncology resident on call suggested that I get on Prilosec and that the
next time when the burping started, I drink an entire can of Sprite or
ginger ale with the Prilosec and then go back to bed. It worked! The burping
stopped right there and never came back! So this time, I went on the
Prilosec the day before I started Gem/Tax.
Rash or Acne on the Scalp
My entire head was being engulfed by an awful rash or acne that is very
painful and characterized by pustules. Regular acne medicine had no effect,
but tea tree oil helped a little.
My primary care physician put me on a sulfa antibiotic, and that is FINALLY
clearing up the mess. On the second day, I saw SIGNIFICANT reduction in
pustules and pain. On the fourth day, I am wearing my wig again!
The same thing happened in 2007 but I just suffered with it and did not ask
for help. I remember showing it to the oncology nurse who expressed sympathy
but did not suggest that there was anything they could do for me.
Loose Stools Leading to Diarrhea
I has loose stools for almost a week, and I was trying to solve it be eating
BRAT (bananas, rice, applesauce and white toast) based on one handout I had,
but that just did not help and I ended up with serious diarrhea and
dizziness and dehydration and missing work!
Then I found a more technical handout in my binder from Duke which said BRAT
is okay but really you must take an over-the-counter diarrhea medicine
because it is the only way to make it go away. (I took Immodium, and it
The thing I was not understanding is that no amount of BRAT will help
because it is the chemo killing the cells that line the GI tract that is
causing the problem.
You know I would rather have diarrhea than be barfing. I am so glad I am not
nauseated at all or barfing at all. Knock on wood!
Posted by Karen at 3:53 AM 8 comments:
Wednesday, August 5, 2009
Does a Tumor Hurt Before it Shrinks?
Remember the tumor in my psoas muscle? I have not mentioned it here for so
long, we might all have forgotten about it.
Anyway, when I went for that checkup with Dr Morris, I was soooo pleased to
report that there had been nary a twinge from that tumor since after the
second day of fabulous CyberKnife treatment. I took a lot of comfort from
that. I love the idea of the radiation kicking that tumor's behind.
Well, in the last couple of days, there have been a few twinges from my
psoas muscle. It's not anything like I felt before (which was a burning,
intense pain in my hip and lower back). What I have now are little twinges
of discomfort, more like an awareness or a rumor of bad news.
So I surfed the web looking for anyone who says that a tumor might start
hurting again just before the chemo makes it shrink. I found three little
references to such a phenomenon! But those three references were buried
amongst 170,000 general references about tumor pain; not exactly the
overwhelming validation of my theory that I was hoping for.
I plan to ask Dr Reidel next week, when I see him, if the twinges could be
an indication that the chemo is working.
I would love to think that the chemo is making trouble for that tumor.
I figure, that is a sort of lovely thing to think. Reassuring. Since it is
such a lovely thing to think, I am just going to keep thinking it till Dr
Reidel answers my question next week. Chances are, there is no answer to a
question like that. The real answer will come when we do the next scan. Did
the tumor shrink? Then by golly that discomfort might have been a precursor
symptom to the shrinkage!
The next scan will occur after the next cycle of chemo is complete.
Hang in there; four weeks to go.
Posted by Karen at 6:12 PM 12 comments:
Sunday, August 2, 2009
Ricky and Lucy
Here I am in my new red wig!
Why invoke the spirits of Ricky and Lucy? I am married to the most wonderful
guy in the world. But there are times when Lou lets loose a stream of
Spanish at me in a very Ricky Ricardo style. After 17 years I know what some
of those words mean! But I say, "Yes Ricky!" and we laugh.
Posted by Karen at 8:05 AM 9 comments:
Official Handout on Healing Touch
[Here is the text of a handout that Amelia gave me on Healing Touch in case
you are interested.]
What is Healing Touch?
Healing Touch (HT) is an energy-based therapeutic approach to healing.
HT uses touch and compassionate intentionality to influence and harmonize
the energy system of a person, thus affecting physical, emotional, mental,
and/or spiritual health and healing. HT therapies support the person's
immune system and self-healing process and enhance the healing effort of
The HT program consists of four levels, teaching several energy modalities
and developing the participant from beginner to advanced practitioner with a
Healing Touch Practitioner certification and the opportunity to become
trained as an instructor. HT modalities are taught and researched in many
universities and hospitals worldwide.
These effective methods can:
•Reduce pain and anxiety
•Lower stress and tension
•Accelerate wound healing and the general healing process
•Prevent illness and support the immune system
•Activate mental clarity
Western science and Eastern medicines acknowledge the existence of energy
fields that surround and permeate all physical bodies. Research studies in
the field of psycho-neuro-immunology show that our thoughts and feelings
affect our physical being and vice versa.
Workshop participants will develop energy field sensitivity and learn
practical methods to discern and harmonize blockages in the field. HT is a
viable preventive method to maintain physical, mental, and spiritual harmony
Who May attend Healing Touch Courses?
The Healing Touch courses are open to all physicians, registered nurses,
chiropractors, body therapists, counselors, psychotherapists, other health
professionals, and individuals desiring an in-depth understanding and
practice of healing work using energy-based concepts.
For More Information
If you are interested in a Healing Touch session or in taking the Level 1
class, contact Amelia at
Posted by Karen at 7:53 AM 1 comment:
Saturday, August 1, 2009
QUICK UPDATES FOR AUGUST
Monday 8-31-09: Woke up feeling great! I have been rifing Lou's recumbent
bike and simultaneously praying the rosary. I hope Jesus and Mary like
multi-tasking Catholics! The antibiotics have worn off, and my complexion is
a little blotchy, darn it!
Sunday 8-30-09: Stayed up late, had a lot of fun at the party! Thanks so
much to Jane, Darlene, and Meredyth for doing all the hostess work and
cleanup during the party for me! I feel great today. It is 2PM and I am
still in my pjs. This morning Lou and I watched For a Few Dollars More with
Clint Eastwood and Lee Van Cleef. My parents sent me totally cute Virgin
Mary earrings (from http://www.signals.com/) which I plan to wear till it is
time to get loaded into the machine for the scan on Thursday.
Saturday 8-29-09: Platelets must still be low because I blew my nose pink.
Not going to blow my nose again today if I can help it! Pink is my favorite
color (but not in my Kleenex). Small party tonight. Going to take a nap now
so I have energy later. Since it has been so long since I had a migraine, I
am thinking it is time to delete the count (below). No migraines for the
Last TWELVE days!
Thursday 8-27-09: AIR CHEMO DAY My platelets must be low because when I blew
my nose this morning, I saw blood. Yuck. Felt fatigued but not confused
yesterday, so that is an improvement. No Migraines For the Last TEN Days!
Wednesday 8-26-09: Feel good this morning, but decided to work from home
today in case I get all exhausted and confused again. Probably not fair to
my coworkers for them to have to deal with me and tell me to GO HOME! Took
Advil for the burning on the bottoms of my feet. Mouth is a little dry. Eye
drops are such a relief! No Migraines For the Last NINE Days!
Tuesday 8-25-09 Evening: Bad Day! I was fine for a couple of hours this
morning, and then I could not think or write. Total chemo brain. I stayed
long enough at work to make some urgent changes to a document, to make sure
some people had the info that they needed, to bail out of all my meetings,
and to come home at lunchtime to GO TO SLEEP. Plus, the bottoms of my feet
are on fire. No Migraines For the Last EIGHT Days!
Tuesday 8-25-09: Alarm went off at 5:30AM so I could ride the vanpool today
-- but I forgot I have a Healing Touch appointment after work with Amelia.
So no vanpool. My right foot is killing me right now. Yesterday I struggled
with an inability to think after 3:00PM. No Migraines For the Last EIGHT
Monday 8-24-09: Power napped in complete exhaustion on both Saturday and
Sunday afternoon, but then was fine all evening; maybe that is my new
pattern for the Super Chemo Weekend. Feel good this morning, maybe a little
tired and my feet are burning but gosh I wouldn't trade these side effects
for some other ones I have heard about! ;^) I have a busy week at work which
looming deadlines. I like the rush! No doubt, I am a sick woman. No
Migraines For the Last SEVEN Days!
Sunday 8-23-09: Woke up power burping again at 4:00AM! Took Prilosec with a
whole can of ginger ale, and it stopped. Otherwise feel good. Spent an hour
on the Barnes and Noble website searching for a new book I heard about on
the radio but did not catch the author or title... Found it! Jonathan Rabb's
Shadow and Light. Also bought Richard Holmes's The Age of Wonder: How the
Romantic Generation Discovered the Beauty and Terror of Science to improve
my mind ;^) No Migraines For the Last SIX Days!
Saturday 8-22-09: Yesterday was crazy good and I never got to blog! Woke up
today feeling very good, finally no headache. Today we are taking advantage
of my Decadron energy and putting fresh water in the hot tub. My job is to
clean the interior surface between the old water and new water. Lou's job is
luckily to perform every other task!
Thursday 8-20-09 Evening: The Super Chemo went really well today. Got a
bunch of new info I'll probably post tomorrow (or maybe in the middle of the
night tonight ;^) You are all too kind to me, reading this blog and leaving
such wonderful messages! It brings me so much surprise and joy. Thanks so
much! No Migraines For the Last Four Days!
Thursday 8-20-09 Morning: Super Chemo Today! Let's kill some cancer cells
today. No Migraines For the Last Four Days!
Wednesday 8-19-09: Talkative Decadron day, so watch out! I had decaf at
breakfast and will avoid caffeine for the next three days. Feeling good
except I woke up with a headache that a cup of decaf just cannot dispel.
Yesterday I got a Get Well Soon card from everyone in my vanpool! Awesome!
Super Chemo Tomorrow. No Migraines For the Last THREE Days!
Tuesday 8-18-09: Yesterday was not good. I had a mild headache and felt sad.
(Underneath it all, I was worrying about the upcoming scan.) I held it
together all day, then burst into tears when I got home. Lou knows just how
long to let me cry and then cheer me up again. I guess I just needed a good
cry because today I feel emotionally solidly back on my feet again. No
Migraines For the Last TWO Days!
Sunday 8-16-09: I felt wonderful till 3:19PM when I started seeing sparkly
lights: MIGRAINE! Darn! Took a Treximet, went to bed and slept for 2 hours.
No Migraines For the Last ZERO Days!
Saturday 8-15-09: Happy Anniversary to Lou and Karen! Seventeen fabulous
years, every year better than the last. I felt wonderful all day yesterday
and woke up feeling mighty fine today as well. No Migraines For the Last
Friday 8-14-09: Slept great because the Ambien trumped the Decadron. There
are three nights in each 18-day cycle where I take the Ambien or stay up all
night. That's not too bad. My scalp is so vastly improved, I'll be a redhead
today! No Migraines For the Last SEVEN Days!
Thursday 8-13-09: Good Chemo Day! Plus, the antibiotics have already made a
big difference clearing up the rash on my scalp. No Migraines For the Last
Wednesday 8-12-09: I have been sleeping through the night for the last
couple of nights. It is awesome! I feel great.
Yikes forgot to copy a few days in here! (Progress not perfection!)
Sunday 8-9-09: Slept great, lazy Sunday planned.
Saturday 8-8-09: WIDE AWAKE at 3:50AM probably because I slept all afternoon
on Friday with the migraine. Got a lot of ironing done in the wee hours. Lou
went to the gun show. I'm going to Barnes and Noble. My face and scalp are
Friday 8-6-09 afternoon: Rats! Migraine AGAIN. Twice in one week.
Friday 8-6-09 morning: TGIF! Slept LATE -- till 7:15AM! Really felt great
yesterday and put in a full day and didn't get to bed till 10PM and read for
awhile. This morning I feel good except my mouth is dry and the bottoms of
my feet are numb -- wish my mouth was numb and my feet were dry.
Thursday 8-6-09: Vacation Day! Air Chemo Day! I planned to sleep as late as
I wanted, but I woke up pretty chipper at 6:45 this morning. Some foods
taste funny right now. I am planning to go out to lunch for sushi with my
friend Nancy. So far, sushi has always tasted good.
Wednesday 8-5-09 evening: Had a great day but hit the wall at 4:15 and
decided to come home. Lots of Nutrisystem food got delivered yesterday so no
idea what I am having for dinner tonight.
Wednesday 8-5-09 morning: Feeling much better than yesterday. So far all I
have is a little bone pain. Planning to actually go into the office today!
I talk to my mother, Patsy, practically every morning as I drive to work, or
once I get to work if I am in the vanpool that day. This morning, Patsy said
that my Aunt Frankie was looking for a way to read through all the old Quick
Updates. Till now, there has been no way to do that. Every time I make a new
update, I just delete the last one.
The Quick Updates are so trivial, there didn't seem to be a reason to keep
them. Who really cares if I slept eight hours last night or just two? If I
am hoping for sushi? (When am I not hoping for sushi?!)
But if Frankie and Patsy want something, then by golly, I have to give it a
shot. So here is a new blog topic where I will try to remember to dump all
the Quick Updates instead of deleting them. We'll call it an experiment and
1) anyone likes it
2) I can maintain it without too much trouble
Posted by Karen at 6:00 AM 2 comments:
Wednesday, July 29, 2009
No More "Bad" Chemo
I have always thought of the three weeks that comprise my chemo cycle as
Good Chemo, Bad Chemo, and then No Chemo. Occasionally I called them Easy
Chemo, Rough Chemo, and No Chemo.
But technical writers always worry about terminology and words and
connotations, and so it finally struck me that "Bad" and "Rough" were not
perhaps the most positive terms to use -- because our words shape our
thoughts, and our thoughts shape our reality. Do I really want a bad or
So, I am switchin' over to Super Chemo for the second week. Gem and Tax
together are super effective in attacking the cancer! They take a super long
time to be delivered! And they require me to get super hyped up on Decadron!
And for the third week, instead of No Chemo, I am going to try Vacation from
Chemo. (I'm not in love with that one; call it my first draft; I am open to
Therefore, tomorrow is my first Super Chemo day. I am driving myself even
though both Meredyth and Anna checked in to see if I need company. I feel
great and want to drive myself while I feel so good. Later, if I am not
feeling so great, I will ask for help and companionship.
I have really enjoyed being a redhead all week at work! It was sort of hard
to keep the wig on today because my stubble is practically JUMPING off my
head, which made for an itchy wig experience.
Tomorrow I will go au natural because what the heck if I can't walk around
bald at the Oncology Clinic at Duke and enjoy the breeze then by golly that
just isn't right! (Plus last week I saw two lovely bald ladies wandering
around the clinic.)
I surfed the web and found some studies where breast cancer patients
experienced like 77% reduction in some side effects while receiving Healing
Touch during treatment. So I have an appointment for Student Amelia to
practice on me again Friday afternoon after my Neulasta shot. I just am
still shocked at how awesome I felt all week. I will try to gather some info
and post it here, including some links.
Posted by Karen at 8:48 PM 10 comments:
Friday, July 24, 2009
Got My Head Shaved
My hair started falling out significantly on Wednesday. At first I wondered
if I could postpone shaving my hair because, let's face it, I would much
rather have hair than not. But on Thursday my hair was practically jumping
off my head. I had to keep brushing it off my shoulders. Yuck.
At one point yesterday I sat on a bench in a pretty garden area at Duke, ran
my fingers gently through my hair, and let tufts of hair float away on the
breeze... too bad it is not springtime so the birdies could use my hair in
their nests. Right after chemo, I went to the place where Lou gets his hair
cut and got my head shaved. The lady was sort of traumatized. She said she
had been a hairdresser for seven years and this was the first time she had
to do this. So I had to console her ;^)
Yesterday's treatment went really well. My platelet count is back up so they
let me have chemo. It's Sarcoma Week at Duke, so I got a bunch of freebies:
tote bag, binder full of helpful info, a cool rubber bracelet, and a happy
Caribbean cruise style hat. In the treatment room, I had a tag team of
nurses, Annette and Karen, who were funny and entertaining. I got out of
there at about 2:30.
Today I feel totally fine.
I wonder if I feel so good because Amelia (a Healing Touch student) did
energy work on me on Wednesday evening, which was wicked cool.
Posted by Karen at 8:17 AM 11 comments:
Thursday, July 23, 2009
CyberKnife Checkup Results
The CyberKnife checkup went really well.
We ran through all my side effects (which were minimal) and talked about how
the pain from my hip and lower back is Gone Gone Gone! The pain actually
went away after the second CyberKnife treatment.
We also talked about the decision to have CyberKnife versus traditional
surgery, and I am so happy we went with CyberKnife.
So much has happened since the last time I talked to Dr Morris, so I also
updated him on the switch to Duke's sarcoma specialty center and the
decision to go with chemo and to forgo the lung surgery. I realized, as I
was explaining things, that I am 100% behind the decision to go with chemo.
I still wish I could have had the lung surgery, but my regret is not nearly
as sharp as it used to be.
I will receive all my monitoring at Duke, and Dr Morris does not need to get
a copy of my results unless it is bad news, which makes sense. Plus, I am
totally free to continue calling him with any radiation questions which is
I asked for a list of things to watch out for. I got a short list. The first
item was if the hip pain comes back, that could be a sign that the tumor is
growing. Makes so much sense! Then there were some symptoms that are sort of
gross and I won't mention here that could indicate radiation side effects.
So this was a really excellent checkup.
The checkup also gave me an opportunity to say goodbye to UNC. I got a lot
of good care there.
Posted by Karen at 7:29 AM 4 comments:
Tuesday, July 21, 2009
CyberKnife Checkup Tomorrow
Tomorrow morning I go back to the UNC radiation oncology department for my
first checkup after CyberKnife. The plan is that all future checkups (and
monitoring of that tumor) will be done at Duke.
Sometimes I forget about the CyberKnife! It was such an amazingly easy
process, and the side effects were minimal...
However, I have wondered if the radiation is contributing to the amount of
side effects I am having now with chemo. Even though the first cycle of
chemo went extremely well, I would have to say that I have had a lot more
side effects this time. Two years ago, I do not think I had any side effects
in the first cycle. Certainly no dry mouth, and certainly no foot numbness.
Oh, did I forget to mention that the bottoms of my feet have been feeling
numb? That super special side effect did not kick in last time till about
the 4th cycle.
Retraction: Lou and I did not stroll through the arboretum this weekend!
Instead, we ran errands and laughed a lot and watched Gran Torino, which was
awesome. I did sweep the bark back into the flowerbeds, but I see that the
heavy rains yesterday undid some of my good work.
Posted by Karen at 6:13 AM 4 comments:
Saturday, July 18, 2009
This is my "off week" which means I did not get any chemo on Thursday. Every
third week is an off week, a vacation, a chance to bounce back.
I woke up this morning feeling really great, as though I had bounced back
Lou and I were in the hot tub at 7:00AM. I realized how energized I feel
when I found myself looking at the flowerbeds back there and thinking that I
should spend some time this morning cleaning up the bark that last night's
heavy rain washed out of the flowerbeds... I must be feeling energized if I
am thinking about yardwork!
I'm making blueberry pancakes for breakfast.
Lou and I are thinking about walking through the arboretum today in Chapel
Hill, but nothing has been set in stone yet.
Posted by Karen at 7:56 AM 8 comments:
Wednesday, July 15, 2009
Goodbye Sparkly Raspberry Lipstick
This has been a pretty darned good week so far! I have already accomplished
a lot at work, slept really well, and ate some sushi. There were minor and
transient bone pains and muscle spasms, but nothing that was not solved with
some Advil and Tylenol. The most annoying problem has been my dry mouth.
On Monday, I attended a lunchtime seminar called "Look Good, Feel Better"
where I got a bunch of makeup and some strategies for trying to look my best
during chemo. There was a really strong emphasis on not contaminating your
makeup, and I had this epiphany that continuing to use my favorite old
lipstick is probably not a good idea especially now that my immune system
might be compromised. (Yes, I really do have an old Clinique lipstick in
exactly the right raspberry color with sparkles that I bought at least six
years ago. No, it is not all dried up! It works fine! Yes, I will go throw
it into the trash as soon as I complete this post.)
On Tuesday afternoon, I noticed that my tongue had turned white. A big white
floppy tongue filling up your mouth, yech, that's not right. So the minute I
got home, I rinsed with salty water and phoned Duke and chatted with the
oncology resident on-call who reassured me that as long as I had no fever I
was okay to wait till Dr Reidel could call me tomorrow. (If you are
wondering whether my white tongue might be related to the scary old
lipstick, it is just not true.)
On Wednesday, I sipped Gatorade, coffee, ginger ale, milk, and water but
nothing really worked to keep my mouth moist. Well, the rice pudding helped.
Mmmmmm. But no matter how much you like rice pudding, you just cannot keep
your mouth full of pudding 24 hours a day. I read online that there is
artificial saliva. The first time I read that, I gagged, but the idea is
starting to appeal to me.
Tomorrow, I will have bloodwork done, check in with Dr Reidel, and then try
to catch at least part of the Chemo Orientation seminar where I hope to get
more info about how to deal with my dry mouth. And then if I have any energy
left after work, I plan to go out to dinner with Carol for North Carolina
BBQ. Lou does not really care for vinegary North Carolina BBQ, so Carol and
I will have at it while he is playing poker. Marriage is about compromise.
Posted by Karen at 6:39 PM 4 comments:
Friday, July 10, 2009
Ten Fun-filled Hours with Anna
I had a blast with Anna yesterday! When she pulled up, I was outside
chatting with Lou and weeding the flower beds. (Wednesday's Decadron made it
impossible to just sit quietly on the porch; also made it impossible to
sleep at all Wednesday night.)
Do you know that I tried to talk Anna out of staying with me all day? No one
had ever sat with me through chemo before. I had been a little worried about
what it would be like to have someone there that I might potentially have to
entertain for many hours, but that was silly. We entertained each other
talking about everything under the sun. A gossip magazine devoted to Michael
Jackson kept us busy for a loooong time! Plus, for long periods we quietly
did our own thing (I was making huge mistakes with Tetris and could not get
a good score, so I switched back to reading a charming old Betty Neels
romance first published in 1977). I tried not to take advantage of having
Anna there, but gosh it was awesome to have someone to go get me a soda!
But the really amazing thing that happened when we were leaving the Duke
Food Court with our takeout lunches. Anna saw an old friend Eve and her
husband sitting at a table eating an early lunch. Anna had been trying to
find this old friend for long time and had searched the phone book as
recently as a few weeks earlier with no luck. And here she was! Eve and Anna
had a super but quick reunion with lots of hugs. They exchanged contact
info. It was as if God had planned the whole thing, and my chemo was just an
easy way to get these ladies to cross paths. Cool.
The chemo went really well, even though this was the "tough" day with both
the easy chemo and the hard chemo. This time, I was in the back of the big
room treatment room. Instead of watching the drama at the nurse's station, I
got to surveil the cool curtained-off rooms with beds all along the back
wall. You get a bed and privacy curtain and a Jack-and-Jill bathroom if you
have chemo that takes a long time.
Nurse Jamie took care of me and showed me that I have a call button on my TV
remote so that I could call her at any time. Well! If I had know about that,
I would not have been stuck for 12 minutes last week after the final bag
emptied. Oh, I am relieved to report that Nurse Ellen stopped by to say
hello, and I had the opportunity to apologize for getting upset last week
over that 12 minute wait.
We left Duke at 4:25PM and flew home in light traffic. I was thrilled to
give Anna a tour of the house (whew, it was clean), then Lou and I had
dinner, and he left for poker night. I made a quick fresh fruit run to
Harris Teeter. I wanted watermelon, but saw that cherries are drastically on
sale at $1.97 lb with my Harris Teeter discount card. Yum! Reminders of
living in Washington State!
I was in bed by 8:30PM and slept soundly till 3:30AM. (Did not wake up when
Lou got home after poker, so I can't report whether he won or lost.) Seven
hours of sleep, pretty good. I feel great and plan to get to work in time
for the 8:00AM staff meeting (so early so that our international coworker
can join in). By 2:00PM I need to be back at Duke for the Neulasta shot,
which will boost my bone marrow and elevate my blood counts and give me bone
Posted by Karen at 4:18 AM 8 comments:
Hardly Any Side Effects in the First Week
When I visited Duke yesterday for my second dose of chemo, I was happy to
report to Dr. Reidel that my first week was pretty much a breeze.
Sure, the 10mg intravenous Decadron made me chatty last Friday, but that was
unpleasant only for the people around me ;^) because I had a nice time with
On Monday my ribs ached intensely until I took three Advil, and I was
exhausted for about an hour -- so I switched tasks at work to something a
little less difficult. On Tuesday my ribs ached again but much less, more
like a friendly reminder that I have ribs and that they had ached yesterday
and wasn't I lucky that they weren't really aching any more.
The real challenge came on Wednesday when I had to take 20mg Decadron by
pill in the AM and again in the PM. In retrospect, I did it all wrong and
paid the piper. First, at 6:00AM, I swallowed the first 20mg with my usual
giant mug of caffeinated tea (two teabugs) and then when I got to work at
7:45AM, force of habit had me get one cup of regular coffee... and so at
about 8:45AM when the Decadron hit, it hit with full force. I was jumpy and
restless and chatty and my mind was racing. I took the elevator down to the
cafeteria and then decided to run up the stairs to the fifth floor instead
of taking the elevator; I gained the fourth floor before having to stop to
catch my breath (maybe this is a good side benefit!). Plus I was way too
talkative in April's 10:20 staff meeting!
So what did I learn? This morning, in about an hour, I have to take 20mg
Decadron again. No tea! No coffee! Plan to think calming thoughts! But maybe
I will also hit the stairs at some point this morning.
Posted by Karen at 3:58 AM No comments:
Saturday, July 4, 2009
Super Chatty on Friday
Decadron makes me speedy and hungry and chatty. Poor Lou, having to put up
with me talking a mile a minute. But there is no way to get the chemo
without getting the Decadron. So we are all stuck with the side effects.
Decadon is given intravenously on both week one and week two. But on week
two I also have to take it in pill form at home for a day before and a
couple days after the chemo. Nurse Ellen told me a cautionary tale about a
lady patient who secretly did not take her Decadron pills because it
increased her appetite, and she blew up with extreme fluid retention instead
and they were struggling to get the fluid retention under control when she
finally admitted that she wasn't following directions. (Call me cynical but
the story just seemed like something loosely based on a true story that the
nurses tell everyone to scare them into compliance. But I am already pretty
compliant and do not need any more scaring.)
Other than chattiness and a red face, I have been totally fine!
Yesterday I ironed for hours and finally cleaned up the mountainous backlog
of clean wrinkled clothes. I had the ironing board set up in the living room
while we watched both Star Trek Insurrection and Star Trek Nemesis. We were
not total slugs though: we also walked Samantha twice.
Today the plan is to get out of the house. Headed to Darlene's at 2:00 to
hang out by the pool and hear about Charlie's new job and then Jeff's at
6:00 for a cookout and fireworks... unless I run out of steam.
Happy Fourth of July!
Posted by Karen at 10:36 AM 7 comments:
Friday, July 3, 2009
First Chemo Treatment Went Well
I was sitting on the front porch doing bills when Terri pulled up to drive
me to the Duke Clinics. Terri set the bar pretty high! She arrived early and
had a cup of coffee waiting for me. She convinced me to get tickets for the
Jersey Boys musical, which is something Lou and I had been debating. And we
generally just had a great time on our way to Durham.
I got to the Duke Clinics at 8:15AM, so I checked in for my 9:00AM
appointment at 8:20AM and settled in for a long wait. I emptied my Lands End
totebag, which I had randomly stuffed with stuff I might need (Tetris game,
two books, calendar, lunch granola bar, drinks, Family Medical Leave Act
paperwork, rosary beads, ginger chews from Heidi, pens, notepaper, cell
phone, etc.) and as soon as it was all spread out on the chair next to me,
they called my name. So I jammed everything back inside in a worse jumble
than before and ran in to have my port "accessed" and blood drawn for
After that, I was still an hour early for Dr Reidel, but the nurses said he
isn't a stickler for appointment times and they put me in a room to wait for
him. I had time to organize my totebag and start playing Tetris, but it
wasn't too long a wait. First I met an assistant and then Dr Reidel. The
only news is that we aren't going to take a peek after six weeks of chemo
because it might be too soon, but after nine weeks. Cool with me. I would
rather not peek too early, get the wrong idea, and quit Gem/Tax prematurely.
Then I wandered around the building for about 30 minutes, got a muffin,
phoned Lou, and then checked in early at the Treatment Room for the chemo.
They gave me a pager (as if I were at a Red Robin restaurant) and I wandered
around a little more. I was called pretty quickly and was seated in a chair
for treatment at 11:15AM. Ellen was my nurse. There were some pre-meds and
then the actual chemo started just before noon, so we knew I would be done
around 1:35PM so I sent email to Meredyth at work to say I would pop out the
front door at 1:45AM.
The Treatment Room at Duke is much bigger than the one I was in an UNC two
years ago. It was both disconcerting to be in such a big room, but also
entertaining. The way they have chairs, cabinets, and equipment arranged,
you can't see everyone at one. But there's a steady hum of conversation and
lots of beeping and lots of people walking around. I could see only three
other people getting treatment, but I was also near the Nurses Station where
all the action is. At one point one nurse was very upset that some unknown
nurse had taken the goggles out of some kit without leaving a note...
Plus I finally picked up seven voicemail messages and checked my email on my
The pharmacist visited me, gave me a calendar, and talked about Gem and Tax.
She set my mind at ease about why I would not be getting Benedryl next week.
The type of Tax I got last time was dissolved in a solution that caused a
lot of people to have an allergic reaction, so the Benedryl was for the
solution not the Tax! The Tax I am getting now is not dissolved in such a
solution. I guess they have made progress in two years! Plus she also
explained that now the Gem is administered over 90 minutes (instead of 30)
because it gets better results -- but it also has a worse impact on white
and red blood cell counts. So this time I really will need the Neulasta
shot, which I get next Friday and which boosts the bone marrow to produce
more of everything (and causes bone pain which is something to look forward
Nurse Ellen was great, but she was busy. When I was all done, my machine
started beeping and a technician turned it off but did not inform Ellen. So
12 minutes went by, with me anxiously watching the clock and worrying about
Meredyth waiting for me, till I saw Ellen and peevishly informed her that I
was done. She took care of me immediately and sent me on my way, which was
great. (I'll have to apologize to her next time I see her.)
I popped out of the front doors at 1:40PM and there was Meredyth waiting for
me. We had a nice ride back and actually spent some time talking about WORK.
When I got home I got a big hug from Lou and we decided that since I felt
fine, we needed to run a couple of errands. Good thing, because as we were
nearing the end of the errands, I got pretty tired.
I slept great last night but woke up at 4:00AM this morning, which is
probably a side effect of the Decadron they gave me yesterday. Grrrr
Decadron! But 4:00AM is not bad. I tried to fall back to sleep but gave up
at 4:45AM and figured I could come post.
I am not sure what is happening today. It's a holiday!
Posted by Karen at 4:56 AM 4 comments:
Thursday, July 2, 2009
Terri and Meredyth
So chemo starts today!
Terri is picking me up at 7:30AM so that no matter what kind of traffic we
run into (I hope not literally run into) she'll deliver me to the Duke
Clinics on time for the 9:00AM appointment. That means Terri has to leave
her house before 7:00AM. She's a saint!
Then Meredyth will wait around at work for my call. Work is about 25 minutes
from the Duke Clinics. When I know what time they'll be done with me, I'll
call Meredyth to let her know and she'll come rescue me. Meredyth is a saint
Thanks so much to everyone who volunteered to drive me. I have next Thursday
all set. Anna is going to bring me, hang out for about seven hours, and then
bring me home. I'm not sure if that makes her a saint or just crazy ;^)
So here is the schedule today:
10:00AM see Dr Reidel
11:30AM chemo starts
I am a little nervous! This chemo was not all that bad in 2007, but a lot
has changed (I am so much older!) and they use different pre-meds and so I
am nervous. Sort of like how I used to worry that there was a serial killer
living in the woods behind the house in Woodinville... okay, maybe being
nervous today is not quite as irrational at that.
Thanks also to everyone who sent gingerbread recipes! I have not baked yet
but plan to. Super special thanks to Fran and Nancy and Mama Jo who
recognize that maybe I am not a baker:
•My Aunt Fran in Massachusetts sent a gingerbread that was like a heavenly
gingery cake, with chunks of crystallized ginger baked right in. Lou and I
fell upon it as if we were starving wolves...
•Yesterday I came home to a batch of ginger cookies sent from Washington
from Nancy and Mama Jo. This time, I guarded the cookies and Lou and I only
had one each. Although, I will be out of the house today for about five
hours and he might find where I hid them, because he is pretty sneaky.
Lou just yelled that breakfast is ready so gotta go. Plan to update ya
Posted by Karen at 6:23 AM 3 comments:
Friday, June 26, 2009
The Big Plan
The big plan is chemo, chemo, and more chemo! No surgery, no biopsy, no
Chemotherapy will start this coming Thursday. We're going to try the gold
standard for leiomyosarcoma (Gem and Tax) and then take a peek after six
weeks to see if it is working. If it is not working (if something grows)
then we'll switch to one of the other three chemo drugs that are effective
Ladies, I am going to need rides to and from Duke for the first three weeks
-- after that, the doctor will let me decide whether I want to drive myself
based on how I feel. Nice.
So, now that we have the big plan laid out for ya, how about some details?
What did the scan show? The tumor in the psoas looks exactly the same, no
shrinkage, but that is totally fine and expected. There are actually six
nodules in my lungs (not four as previously reported) but the extra two are
super small and evidence of them can be seen if you look back to earlier
scans. So it's not like there are any new ones, just that this was a better
scan. As for the pancreas, there is a 4cm mass in the middle. I got to see
it! Dr Reidel pulled up the scans and showed me everything, whichwas
awesome. The mass is still unfortunately a mystery.
Why not biopsy the pancreas? The doc explained that there are three things
that the mass could be. And then he went on to describe the approach for
each -- and it always came back to chemo. So basically, there is little
point in a biopsy because no matter what the results are, the answer is
chemo. We are going to watch the mass and watch my sugar levels (which would
be a good indication that my pancreas is not working properly). If
everything else responds fabulously to the chemo (like shrinks) except for
the pancreas mass, then we would probably biopsy the pancreas mass later
on... Oh, plus, if it is another cancer typical in the pancreas then the Gem
I will be getting is a good chemo to attack that.
I love Duke! And Dr Reidel is great because he takes the time to explain
everything and convince me and even spell things for me (because I am of
course taking notes). I have more details to share but will have to save
them for another post because it's time to go to breakfast.
Lou and I are in the Outer Banks. We spent the late afternoon on the beach,
getting thrown about by ginormous waves. It was so much fun!
How you have a fun day, too.
Posted by Karen at 7:03 AM 15 comments:
Wednesday, June 24, 2009
Tomorrow is the Big Day
Tomorrow morning I hear the treatment plan. Perhaps I'll have some decisions
to make. I am really looking forward to the meeting. I really want to get
Plus, right afterward, Lou and I head for the coast!
The plan is to update the blog on Thursday night, when we are settled in at
Posted by Karen at 9:37 PM 3 comments:
Sunday, June 21, 2009
Transition to Duke
Last Thursday, I called Dr Reidel's office to let them know that I have
decided that I want Dr Reidel to be my medical oncologist. I told the nurse
about Lou's idea: that maybe the sarcoma team would want me to have the new
CT scan BEFORE they meet on Thursday to review my case. As always, Lou's
idea was excellent. The nurse said that it might be a couple of hours, but
that she would call me back that afternoon with the answer.
About an hour later, Dr Reidel himself called me! He wanted to know what the
UNC doctors had to say about the mass in my pancreas, so I gave him an
update. He postulated that a biopsy might be necessary but that we would
wait and see what the team says. He said that his staff would make two
appointments for me:
-- before the sarcoma team meets: new CT scan (with contrast)
-- after the sarcoma team meets: meet with Dr Reidel to discuss what the
On Friday morning, Duke called me to set up the two appointments for this
coming Wednesday morning (scan) and Thursday morning (meeting). Awesome!
Everything so far has been excellent at Duke.
Now that it feels like we have the doctor thing under control, our thoughts
inevitably have turned toward fun. So Lou and I decided that after the
Thursday meeting, we will drive to the Outer Banks and spend three nights at
a hotel on the beach.
We felt pretty safe making a reservation for Thursday night because we
figured that there is little chance the doctors would want to do anything to
me on Friday. (We know that chemo would start on a Wednesday or a Thursday.)
Oh, and we'll bring the laptop and use the free wifi at the hotel to update
the blog on Thursday with the new plan.
So you are now up to date.
Posted by Karen at 1:33 PM 14 comments:
Saturday, June 20, 2009
The Stubby Pony Tail
I've been growing this pony tail since June 2007 (which is when the first
round of chemo ended).
Not that impressive!
But almost good enough to be seen in public. I have even been looking at
barettes and fancy elastic bands lately...
Now I know for sure I'm headed for the exact same chemo again.
I'll start losing my hair on the 21st day after chemo starts. So there's no
hope of improving this pony tail. (Don't get me wrong, chemo is giving me
lots of hope! Just not pony tail hope.)
Yesterday afternoon, I went to the fabulous EnV Color Bar Salon in Apex, and
Renee, who is an artiste with cut and color, gave me an impossibly cute
short style. (No photo available yet.)
Here is a final look at the pony tail:
Thanks very much to Jay who took these pictures for me at work on Friday.
Posted by Karen at 1:23 PM 5 comments:
Thursday, June 18, 2009
Definitely Having Chemo
Lou and I went to the Duke sarcoma specialty clinic for a second opinion
about the proposed chemotherapy. We were both hoping to hear that chemo
would not be necessary. Dr. Reidel at Duke was excellent. In fact, the whole
experience of being there in Clinic 1B/1C was excellent.
Here are some of the things we learned:
Is chemo necessary for me right now? Yes, because the cancer has come back
in multiple places. Chemo is the system-wide method of attacking the cancer.
That is, you take the chemo, and it can attack any cancer anywhere. (In
contrast, radiation and surgeon only attack the specific cancer you focus
Is chemo effective on leiomyosarcoma? Yes. For leiomyosarcoma, 40% of
patients receiving the Gem/Tax combo have a reduction in the size of their
tumor. Now, reduction is a fabulous result; you're supposed to be happy if
the tumor just stops growing. (Dr. Reidel confirmed what I saw on the web,
that if there were no sign of cancer, then it is controversial whether chemo
is effective as a preventative for future leiomyosarcoma. But alas that is
not my situation.)
How rare is leiomyosarcoma? About 12,000 people every year are diagnosed
with some kind of sarcoma, and about 2000 to 3000 of them are
leiomyosarcoma. So, it is rare but not the most rare.
Why isn't surgery a good idea when the cancer has come back in multiple
places? This is still hard for me to grasp intellectually, but the
explanation we got today was that the surgery and recovery afterward wastes
time before the chemo can start, and the chemo is more effective when the
cancer is in multiple places because it is effective system-wide.
Oh! In case you haven't noticed, the visit was very pro chemo, which makes
sense because Dr. Reidel is a chemo doctor! (A medical oncologist.)
Anyway, since chemo is defintely going to occur, I am planning on getting a
cute short haircut at my earliest convenience. I can almost make a pony
tail! I am so close!
I have saved the not-so-good news for last. Maybe some of you have already
One of the things that Dr. Reidel did before he saw us was review all the
scans that have been done recently. He told us that the MRI from May 27
mentions a 3 cm mass in my pancreas. Lou and I were floored. No one
mentioned my pancreas to us!
So I had some homework today, to call my oncologist and my thorasic surgeon
and find out what they know. I was hoping that they had already looked at it
closely, determined that it is nothing to worry about, and just forgot to
mention it to me...
I was scheduled for the lung surgery next Wednesday, but now that I have
brought my pancreas to everyone's attention, that surgery is on hold. Turns
out, there was no mention of the mass in the preliminary MRI report, only in
the final report. Plus, this mass does NOT glow on the PET scan. Not all
sarcomas glow, but my other spots glow "bright as light bulbs" (except for
the two tiny ones, which do not glow). So it kind of got missed. Everyone is
looking at it now however. No one knows what it is.
The thorasic surgeon will not perform the lung surgery unless I have a
biopsy that shows this new mass is definitely not cancer. Someone is
determining now if the mass CAN be biopsied. But we will have to decide if
it SHOULD be biopsied.
Lou and I are leaning toward just going ahead with the chemo, forgetting
about the lung surgery at least for now.
Posted by Karen at 2:50 AM 11 comments:
Sunday, June 14, 2009
Ginger Snaps and Ginger Ale
I have nothing exciting or momentous to pass along to you.
The last few days, I have been feeling fatigued, with a backache and mild
nausea off and on. Naps work on the fatigue; Advil works on the pain; and
ginger snaps & ginger ale work on the nausea. I sort of wish I knew how to
make gingerbread. Anyone have a gingerbread recipe you want to email me?
On Friday night I went for a sleep study to see if I have sleep apnea.
On Saturday, Lou and I hung out at Chaz and Darlene's house in the old
neighborhood. We had a super lunch and then a wonderful time floating around
in the pool. It was awesome.
Lou asked me to make him a meatloaf for Sunday dinner.
Have I mentioned that I gave up putting sugar in my morning tea? For years I
have been obsessed with my perfect morning tea: Tetley British Blend round
tea bags, two per mug to get it good and black, with 1/2 teaspoon of sugar
and skim milk. I used to drink endless cups of tea! But a few weeks ago, I
gave up the sugar because it did not seem like a good idea every morning to
send a little rocket fuel to the cancer. But ugh my tea is just not the
same. At first I tried no sweetener at all, but now I use a sprinkle of
Splenda. It is okay. But I have no desire any more to have endless cups. Two
mugs seems to be my max.
Oh, I can hear that Lou has The Two Towers in the DVD player. Got to go.
Posted by Karen at 2:22 PM 7 comments:
Thursday, June 11, 2009
Good Day for a Sick Day
Jeepers! I am glad Nurse Jerry talked me into taking the day off.
I woke up feeling awesome but have had mild back pain, mild nausea, and then
WHAMO a migraine.
But, I have to say that I feel pretty good emotionally.
Don't want to make my head hurt so I am logging off...
Posted by Karen at 3:35 PM 5 comments:
Wednesday, June 10, 2009
Done with CyberKnife!
All done! Time for a happy dance!
The treatment today was fast and dare I say almost pleasant, it being the
last one. Although, knowing it was 292 individual beams and 500 CGy did
weigh a bit on my mind; probably best that I did not know it was 292 beams
when we started last week.
Afterward, Nurse Jerry convinced me to stay home tomorrow and rest. He
suggested that I actually wait till Monday to go back to work, but if I am
feeling okay on Friday, I am planning on heading in to the office. Probably
will not be riding in the vanpool, though, since it might be best to have my
own car with me in case I need to head home early.
I have a checkup in a couple of weeks, and then in three months they will
take a peek at the tumor. I am not supposed to expect massive shrinkage --
but a lack of growth would be super fabulous.
Here is some even better news: I found out that I am meeting with Dr Feins
next Tuesday to check in and set the new date for the lung surgery.
Plus, my wonderful primary care physician, Dr Derek Schroder, got me a
second opinion appointment over at the Duke Bone and Soft Tissue Cancer
Center with Dr Reidel for next Wednesday!
Any minute now, our new mattress will be delivered! Gonna have a great
night's sleep tonight. Actually had another great might's sleep last night
on Lou's side of the bed. I guess he has sort of enjoyed his couple of
nights in the guest room away from me tossing and turning, but absence makes
the heart grow fonder and he assured me that he is looking forward to
vacating the guest room tonight ;^)
Sushi tonight for sure at yummy Genki Sushi near the corner of Kildaire Farm
Road and Ten Ten Road at about 6:00PM (in case you want to join us).
Posted by Karen at 1:02 PM 6 comments:
Tuesday, June 9, 2009
Only One More Left
The fourth treatment is complete, with only one more to go!
Today's treatment went really well. It seemed to go fast. I had washed the
Harry Potter CD in the bathroom, and there were no skips or pops this time,
so I got to listen to an entire CD uninterrupted. One more treatment to go
-- one more CD to go.
I ate a couple of ginger snaps before and after the treatment, and my
stomach did not hurt today. Could be all in my head, but it worked.
I remembered to ask for the details: each treatment consists of 292
individual beams. The dose for each treatment is 500 centi-Gray units (cGy).
So the total dose after five treatments will be 2500 cGy. That ought to kill
the tumor, eh?
I got a really cool full color map of the beams -- Lou is going to scan it
in for me so I can post it here.
I was not zonked out this aft, although I did take a quick nap.
Still no word when the lung surgery will occur.
Looking forward to going back to the office on Thursday!
Lou and I are going to scout the flower bed to try to find the spot where
Mommy Snapping Turtle laid her eggs on Memorial Day. The eggs could hatch
anywhere from 55 to 125 days. For more info see
Oh! The final treatment tomorrow will be super early. We need to be at UNC
at 7:30 AM. Yikes. But they have five patients scheduled for the CyberKnife
tomorrow, so it is going to be a looooong busy day for Nadya and the rest of
Posted by Karen at 5:27 PM 2 comments:
Past the Halfway Point
The third treatment was fast! Plus, I snoozed off for part of it. I had been
afraid to fall asleep in case I jerked awake and sent a beam to the wrong
spot, but I am pretty well wedged in to this cradle thing and so probably
couldn't move much.
I forgot to ask about the number of beams and the amount of radiation! Will
try again today!
Lou had a glass of water waiting for me in the waiting room, which was so
sweet because I am pretty thirsty when I get out, and then we were leaving
the hospital by 10:15. Amazing fast!
But my stomach started bothering me during and after the treatment. We had a
quick lunch and I went to bed for just a few minutes... and completely
zonked out for 4 hours till it was time to take poor old Samantha to the vet
for her ear infection. I wouldn't miss that because I am the one
responsibile for washing those ears and wanted to find out if I had done it
I was kind of sleepy and unmotivated for the rest of the day. I sort of
dreaded bedtime because I figured there would be no escaping the decadron
wakefulness, but it did not happen. Lou gave me his side of the bed (which
is comfy and squishy) and he slept in the guest room and I did take an
Ambien and my goodness I slept solidly till 4:30 AM! Awesome!
I am hoping to hear today from Dr Fowler's nurse what the status is for
scheduling my lung surgery. It's tricky because he is in London! But she
sent him email on Friday.
We did not go to see a movie this weekend. Instead, we bought a new
mattress. Yahoo! It arrives tomorrow afternoon. So both sides of the bed
will be comfy and squishy! This time, we made sure to buy the kind that you
can flip and rotate to minimize wear and tear.
This last little message is a little delicate. A wonderful friend sent me
flowers on Friday, a really beautiful arrangement mostly pink! Lou placed it
on the coffee table and it totally filled the room with scent. Well, over
the weekend I had some pain and some nausea, and discovered that the smell
of flowers does not help. This bouquet is still totally lovely but had to be
moved to the dining room where it can be admired from a distance. Thinking
ahead to lung surgery and because I have asthma, I guess I ought to avoid
any more flowers!
Posted by Karen at 5:21 AM 3 comments:
Friday, June 5, 2009
Twenty Percent Complete
They had told me that the first treatment always takes longer because they
are still setting everything up, and they weren't kidding because today was
a breeze compared to yesterday.
I am not sure what time I went in for treatment, but I was out by 11:15 AM.
My blood pressure was nice and low, both before and after treatment. In
fact, I have never seen it so low! And right now I am not dreadfully sleepy.
So today has been a lot better than yesterday.
Gerry the nurse verified that last night's insomnia was indeed the decadron
(might be spelling that wrong) and he apologized for not warning me. Because
I got the dose much earlier today, there is a chance that I will have my
decadron wakefulness from like 6PM to 10PM -- which would not interfere with
I wanted to collect more details for you. Let's see...
•I counted 14 changes of position by the robotic arm before I got distracted
by Harry Potter and stopped counting.
•I saw a yellow caution sticker that read: Laser Radiation Do not stare into
•The part of the machine from which the beam is emitted is called the Laser
•I forgot to ask how much of a dose I am getting -- and how many individual
beams I am getting. I really want to know. Maybe I will write myself a note
for Monday morning.
So I get the weekend off! No more CyberKnife till Monday. Lou and I have
been seeing a new movie every weekend -- has anyone seen Up? Should we try
What I am doing this afternoon that my blogging obligation has been met?
I'll be ironing this stack of laundry ;^)
Posted by Karen at 2:38 PM 12 comments:
One Down -- Four To Go
It went really well today.
They moved the appointment from 8:30 AM to 12:30 PM, because they weren't
quite done creating the "plan" for the CyberKnife to follow. So I got to
sleep a little later and we even hit Costco on the way to Chapel Hill.
We waited in the lobby (with me reading a Betty Neels romance novel and Lou
reading Brother Odd by Dean Koontz) for a while. It turns out they still
weren't done the plan. All I could think was stuff like: No need to rush! Do
a good job! Double-check your work!
At 1:40 PM till they gave me some pre-meds, and then fifteen minutes later
they wheeled me away down a long series of corridors to the Cyber Knife
I'll probably have better details tomorrow. There was a small room filled
with like five PCs, and on one of them was a four-camera display of the
platform I'd be on so they can keep an eye on me. Then there was a bigger
room with the CyberKnife and the bed-like platform and the CD player.
It was cold! But not too cold, especially since they had warned me to wear
After I climbed up on the marginally bed-like platform, Nadya and Kevin both
asked me, "Can you hear that?" and I was like, "Hear what?" and they both
laughed and Kevin adjusted the volume on the CD player because they had
already started the Harry Potter but too low for me to hear.
It seemed to take a long time to get me positioned just right and for the
treatment to start. (For you Harry Potter fans, Hagrid and Harry were just
arriving at Gringotts bank for the first time when the treatment started.)
Dr David Morris was there too. He explained that the machine might come
close to me but that it would not touch me. That was reassuring later
because there were two moments when part of the robotic arm came less than
four inches from my nose.
Once the treatment finally started, there was no pain. I had no trouble just
lying there. The CyberKnife is this large articulated robotic arm with lots
of joints so that it can WHIR and CLICK and move into all kinds of different
positions to point at the tumor from a different spot. Because they hit so
many different spots, I probably won't have that radiation sunburn skin
Harry Potter was a great idea! But at some point near the end of the second
CD, it started skipping and was blasting Wah - Wah - Wah - Wah at me which
was way worse than any of the whirring and clicking noises of the robotic
arm so Nadya came back in and shut it off. I hope we don't get skips
tomorrow too! (For you Harry Potter fans, it was right at the point on the
train to Hogwarts where Draco Malfoy is introducing himself to Harry.)
My blood pressure was a bit elevated afterward. Just seeing 208 over 97 was
enough to elevate it some more! So we hung out for about 30 minutes till it
dropped and we could go home.
We went out for Chinese and got home at 7:00 PM and I was very sleepy. No
nausea and no pain. Lou stayed with me instead of going to poker which was
really sweet. We watched a Stargate and then I dragged myself off to bed to
fall right to sleep... but then later I WOKE UP ABRUPTLY. This time, I was
sure that my arm was supposed to be in a protective brace, but Lou assured
me that this was not so. (That man is a saint.)
And I just have not been able to fall back to sleep. I feel as though I
drank lots of caffeine and might never sleep again. Sort of a bummer because
I have to get up in 5 hours because tomorrow the appointment is for 8:30 AM.
I did not take the sleeping pill (which has worked brilliantly the last two
nights, not waking up in a panic, no nightmares) because I was so sleepy and
I figured there was no need. But, I am thinking that tomorrow night I will
A couple people phoned tonight but we just let the phone ring. I was
incapable of coherent speech anyway, because I was so sleepy. So, if we
ignored you, I apologize and say thanks for calling!
Posted by Karen at 12:19 AM 3 comments:
Wednesday, June 3, 2009
Treatment Starts Tomorrow
Tomorrow the CyberKnife surgery finally starts!
It seems as though it has taken a long time to get to this point. It was
like April 17 when the nurse first call to tell me that there was "a spot"
on my 3-month x-ray.
Recently there have been a few people who seem surprised to see me, and they
exclaim, "You're back already! How did it go?" And I have to explain that I
haven't left yet, that nothing has happened yet. All we have been doing so
far is having tests and collecting more information.
On Memorial Day, I saw a snapping turtle in our big flower bed and we took
pictures of him sitting there, blinking at us and not doing much. Eventually
Mr Turtle started walking toward the little pond next to the house, and my
Dad got a fantastic shot of him striding through the grass, moving
I hope that this is a metaphor for my cancer treatment. It has been pretty
slow so far, but we're about to get moving and accomplish a lot. And perhaps
there will be some sushi along the way. Turtles eat sushi, right? Not bugs?
Lou posted the rest of the turtle pics on http://www.rossranch.com/
Posted by Karen at 8:07 AM 5 comments:
Monday, June 1, 2009
Procuring Harry Potter on CD
Lou and I took your advice and had a wonderful weekend.
It started Friday night with dinner out with our neighbors at a fantastic
Italian restaurant in Garner called La Piazza, where I got to sit with my
closest neighbors' grandaughters and talk about puppies and girls who keep
their Barbies mint in box as an investment (we disagreed with the practice).
Lou and I went to see the X-Men Origins Wolverine movie, took a walk at
Crowder Park, and generally had a lot of fun.
This morning I talked to my primary care physician about how I am not
sleeping well and keep waking up in a panic because I have forgotten to take
my drops! (I have no drops.) After that, I went to work and made a lot of
headway on an issue that has had me flummoxed for awhile.
On the way home from work today, I stopped in at the Cary Public Library
with the mission of checking out the CD version of the first Harry Potter
book, Harry Potter and the Sorcerer's Stone, because I'm supposed to be able
to bring a CD with me to CyberKnife on Thursday, and I decided I wanted it
to be Harry instead of music.
Oh, so I finally got a library card after almost three years here!
At first I couldn't find Harry anywhere. I was bummed, but I chose a murder
mystery that I was NOT guaranteed to enjoy, and then headed for the checkout
desk when the sign Juvenile Audio Books caught my eye. Harry, strangely
enuff, is not kept on the adult shelf.
So, I have Harry. Now I just need to pick my outfit for Thursday. What does
one wear for radiation?
Posted by Karen at 9:21 PM 11 comments:
Friday, May 29, 2009
Fortified by Coffee and a Muffin
Lou and I met with the spinal surgeon first thing Thursday morning, and he
showed us a printout from the MRI. The tumor in the psoas is actually 4cm,
not 2cm. But don't worry, it did not double in size in the last week! It is
just that different diagnostic tools show different details.
The spinal surgeon said that he thought 4cm might be too large for
CyberKnife, so he explained at great length how he could operate. But it
would be a long recovery (eight weeks) and he could not get it all out.
So then Lou and I went to the coffee shop and talked about regular surgery
vs CyberKnife. Our heads were spinning a bit. Every test reveals new
information and radically changes the proposed solution...
Fortified by coffee and a muffin, off we went to see the CyberKnife doctor.
We sat around for a long time while the oncologist, spinal surgeon, and
CyberKnife doctor conferred via telephone in another room. I read aloud to
Lou from an old copy of Men's Health magazine, which is quite hysterical and
interesting and not at all like Better Homes and Gardens.
Anyway, the upshot is that CyberKnife can indeed handle the 4cm tumor. It is
a little large, but they have successfuly treated tumors as large as 15cm.
The MRI was very helpful and worth 70 minutes and an achy shoulder. We
talked about the risks of radiation, which unfortunately do not include
glowing in the dark. We decided to go ahead with the CyberKnife instead of
regular surgery. (We can always do regular surgery later if we need to.)
CyberKnife starts on Thursday, June 4!
I had another CT scan right away. That data will be fed into the computer so
they can plan all the beams. The treatment will be split into five days
because we want a really high dose for the leiomyosarcoma.
The interesting thing is that the radiation will mess up the cells so that
they can no longer divide and grow, but it takes weeks or months for the
cells to actually die. It's like spraying Roundup on your lawn; the weeds
don't keel over right away.
Posted by Karen at 11:19 AM 19 comments:
Thursday, May 28, 2009
70 Minute MRI
A lot happened today that I have not processed yet, so instead I am gonna
tell you about yesterday.
Lou woke me up at 7:00 AM so we would have time to watch the last episode of
season 7 of Stargate SG-1, which would kill the disc so I could send it back
to Netflix. Turns out, the last epsiode of season 7 (The Lost City) is two
hours long! We had to quit halfway through so I could make my 9:30 AM
meeting. Imagine letting work get in the way of Stargate.
My back bothered me all day, but I got really involved trying to figure out
how to revise this one chapter that has apparently been confusing a
customer... and at one point I realized that an hour had flown by without me
even thinking about my back. Awesome. Who knew work could be therapeutic?
I could not eat or drink anything after 1:45 PM, so I set up an Outlook
reminder at 1:30 and had a cookie and a cup of tea and a bottle of water.
At 5:00 PM, I curled up on the floor under my desk and tried to relax my
back. I had forgotten to take more Advil and Tylenol before 1:45 PM and was
suffering the consequences. Lou called me at 6:05 PM to wake me up because I
was afraid I would fall asleep and miss the darned appointment.
The hospital seemed pretty empty and quiet when I arrived at 7:30 PM.
I'll skip ahead to getting loaded into the machine. The MRI person put
headphones on me and explained that I needed them so that she could talk to
me when I was in the machine. She loaded me into the machine with one arm
straight back over my head (so I would fit more comfortably) and tucked a
comfy pillow under my knees. I also had my legs crossed at the ankle which
was very comfortable -- for awhile.
I got inserted into the machine, which was a slightly tight fit but okay.
Like a big hug! Then the machine started clanking and hooting and banging
and I did not hear anything on the headphones for a long time. I started to
wonder, what if the headphones weren't working? Maybe she was talking to me
but I couldn't hear her. Or worse, maybe she had keeled over dead from a
heart attack and I was stuck in this machine with no one at the controls...
Clearly I needed to stop that line of thought.
Instead I started thinking about the black and pink fabric I bought for that
skirt I am going to be sewing. Gosh darn it next time I am buying a pattern
Anyway, after about a million years, she finally came over the headphones
and told me to hold my breath. There was a lot more clanging and honking and
vibration and then she said I could breathe again. That happened a bunch of
times. It seemed to go on forever. My ankles started to ache, but I was
afraid to uncross them in case that messed something up. And my shoulder
really started to ache. I had this ball in my hand which I was supposed to
squeeze if I needed help but I didn't want to be a wimp.
Then she came on the headphones and apologized for how long it was taking.
But she didn't tell me how much longer. I really wished she had. So I
started composing a polite yet pointed little speech about how she could
improve her customer service. (I knew I would never say it out loud but it
was fun anyway.)
Finally my shoulder was so on fire, I had to squeeze the ball to call for
help because I couldn't take it anymore. She answered right away and said
there were just two minutes more. So I counted! I must count slow because I
was only at 65 seconds when she pulled me out.
She said I had been in there for an hour and ten minutes! Yikes!
As I got dressed, I gobbled the granola bar and bottle of water I had in my
pocketbook. Then I was free! Not much traffic on the road. The whole ride
home I was thinking about how I would be coming back first thing tomorrow
morning for all the doctor appointments. When I got home, I got a big hug
Posted by Karen at 6:28 PM
Wednesday, May 27, 2009
A Little Pain
All last week, I kept telling the doctors that I feel fabulous and that I
would never have known the cancer was back. Feeling really good made it sort
of hard to believe all this was happening. How could it be back -- in five
places -- when I feel wonderful?
Well, since Sunday, I have been feeling less than fabulous. I started
feeling a dull, achy, minor pain in my lower back. Luckily, Advil and
Tylenol are enough to handle it. And last night, it also started in my
mid-back and lungs, a minor unpleasant ache when I take a deep breath.
Again, Advil and Tylenol are working.
I left a message for the oncologist this morning to inform him of this
change and see what he suggests. I think I had better get someone to tell me
if it is a good idea to be taking both Advil and Tylenol. When Lou was in
excruciating pain, our primary care physician told him he could take both
ibuprophen and acetaminophen because they don't interact because they work
completely differently from each other.
When I was feeling good, I was already pretty anxious to get the Cyber Knife
started as soon as possible, but now I am even more motivated. My MRI
appointment tonight cannot come fast enough!
Oh, but it turns out that since this is an abdominal MRI, I cannot eat or
drink for six hours before the MRI appointment. I found that out when I
called over there yesterday to make sure I didn't need to do anything
special in preparation for the MRI. Good thing I called! The plan had been
to go out to dinner before the MRI. If I had done so, then I wouldn't have
had the MRI, which is required for my appointments tomorrow!
One final note: Interesting how a little pain dims the cheerfulness. I
started to wonder about the grumpy people I run into in my daily life. Sure
they can be a pain in the neck -- but maybe they're actually in pain.
Posted by Karen at 10:05 AM 6 comments:
Sunday, May 24, 2009
Here is the schedule of events for the upcoming week, which starts with
Monday: Dinner at Karen and Charlie's in the old neighborhood. We're
bringing black beans.
Wednesday: Work! plus an MRI at 7:45 PM
Thursday: Three doctor's appointments:
•9:00 AM spinal surgeon
•11:00 AM radiation planning
•1:00 PM CT scan
Friday: Work! plus Patsy and Omer fly home.
My parents have been such a huge help! Everything would have been so much
harder to deal with without them. They told me that they will come back if
we need them -- but I hope the next time they come, it is for fun and
If we need them, Patsy says they can drive here and finally bring me this
ironing board that they have been holding for me for about five years. It is
sort of an understatement to say that I enjoy ironing. I would love the
opportunity to iron on this ironing board. It is the ironing board from my
childhood, a huge heavy old one that my parents cleaned up and re-painted
and refurbished for me. Patsy says it was a Christmas present, before they
got married, from Nana and Grandpa (Patsy's parents). That's 1960! They knew
how to manufacture an ironing board back then! Built to last!
Posted by Karen at 9:49 AM 5 comments:
Saturday, May 23, 2009
What Happened on Friday?
On Friday, Patsy woke up with what we thought was the swine flu, so we
prudently decided that she could not come to the hospital with us! (She is
actually just having some seasonal allergy symptoms and is feeling fine.) So
Omer stayed home to nurse Patsy back to health, and Lou and I went alone to
Here is some great news: I am a candidate for CyberKnife surgery! 95% sure
it will happen! We won't know for sure till they look at the MRI next
Thursday. If there are creepy tendrils coming off the psoas tumor, then I
would need regular radiation instead of CyberKnife.
I learned that I am in pretty good shape; that I could be having some
unpleasant effects from the psoas tumor but I am not. Like lots of pain,
loss of balance, that kind of thing.
I also learned that I would be able to go ahead with the lung surgery (to
remove those four nodules) really soon after the CyberKnife.
The following not-so-good news is just a dose of reality.
The psoas tumor is actually right up against L4 and has eaten away a bit at
the bone. I was sort of horrified by that because I pictured termites eating
away at load-bearing beams. But Dr Morris said it wasn't that bad. It does
NOT mean that the cancer is "in the bones."
I probably do not have the choice of regular surgery versus CyberKnife. The
choice is probably between CyberKnife and regular radiation. Regular surgery
so close to the spine is possible but fraught with possible complications
(like ending up in a wheelchair).
Dr Morris made it clear that, although they probably can kill this psoas
tumor, and the surgery can remove the nodules in my lungs, that I ought to
expect the cancer to come back again at some point. I mean, there are five
spots right now, so statistically speaking, it will probably be back.
So the plan has to be:
•We get rid of it now.
•We keep watching for it.
•We get rid of it whenever it pops up.
•We make sure that I am around in the future when even better options become
Posted by Karen at 8:01 AM 7 comments:
Thursday, May 21, 2009
No Surgery on Friday!
Everything seems brighter and more hopeful today.
I have already talked to Dr. Feins (thoracic surgeon) and have an
appointment this afternoon to talk to Dr. Fowler (oncologist). Lou is
upstairs compiling our list of questions. He is just so awesome and logical
and got a lot of good info last night from our buddy Bob on Fox Island.
The surgery for tomorrow is cancelled.
There is a chance that they are going to offer me cyber knife surgery at UNC
to take care of the mass in the psoas muscle, and then after that we will
deal with the lungs. Cyber knife surgery is just too cool!
We also called to inquire about the Bone and Soft Tissue Cancer Center at
Yesterday I was so bummed out, I actually declined sushi for dinner. [GASP]
That's the first time in recorded history that I have ever declined yummy
raw fish. But you know what? I'm thinking that if I play my cards right, I
might get sushi for lunch today ;^)
Posted by Karen at 9:36 AM 16 comments:
Wednesday, May 20, 2009
The Suspicious Mass is Cancer
After I called twice looking for results, the nurse finally called me at
4:20PM today and said that the results had just been posted and that the
biopsy was "positive" which means the 2 cm mass is cancer. Darn it, not the
Then the nurse said that my oncologist will talk to the thoracic surgeon
tomorrow to see if we should go ahead with the surgery on Friday, and that
"someone will call me tomorrow." You know, that just is not good enough. I
need to talk to my oncologist in person. I have four blobs of this stuff in
me and about a million questions.
Early this evening, I had a long talk with my old friend Debbie who
suggested that I consider finding a sarcoma specialist, which is advice that
she found after surfing the web for me today. She also suggested that I
should set up an appointment with my oncologist, but by the time I called
over there, everything was shut down for the night.
You know what, though? Lou and I surfed the web for awhile tonight and found
that in 2008 Duke opened a sarcoma specialty center, and they actually list
leiomyosarcoma as one of the 50 things they treat. We got the phone number
and we are going to call there first thing tomorrow.
So, thank you, Debbie!
If anyone else wants to surf the web for me, please feel free. I can use the
help. Darn it, I want the best treatment possible because I am not done
having fun yet!
Posted by Karen at 9:05 PM 3 comments:
Tuesday, May 19, 2009
Two, Six, Fifteen, and Twenty
Let's run through some interesting numbers:
2 cm = the size of the mass in my psoas muscle.
6 hours = the length of time we spent at UNC yesterday from start to finish.
15 cm = the depth they had to go to get to the mass.
20 gauge = the size of the needle they used for the biopsy.
The biopsy was interesting and not really awful at all. The local anesthetic
injection was probably the most painful part. I was on an IV with "conscious
sedation" so I didn't feel much more than occasional pressure and a complete
lack of anxiety.
I was on my stomach on the bed part of the CT machine. They sent me into the
machine to locate the mass. Then they pulled me out to mark the spot and
insert the needle part way. Then they sent me back in to see how close they
were to the mass. Then they pulled me back out so they could insert the
needle further... I went in and out of the CT machine a lot, but it didn't
occur to me to try to keep count.
Anyway, they got a good sample and we should hear tomorrow what it is.
Today, I feel fabulous and am enjoying my last day of vacation. My lower
back is a little sore and stiff. Patsy got a lovely new hairdo by Renee at
the EnV salon in Apex. Later we are going to the fabric store to get some
fabric and a pattern so I can sew myself a skirt with my excellent sewing
machine that my friends at work gave me in December. So life is good.
Posted by Karen at 11:47 AM 6 comments:
Sunday, May 17, 2009
Jimmy Buffett Ate at This Table
We are having so much fun here in Charleston! We haven't even left yet, and
I am looking forward to coming back some day. Last night at 9:45, after our
guided walking tour of scandal and murder, we ended up at Hyman's Seafood
for a late dinner. The girl seats us and Lou looks down to see a little
plaque on the table in front of him that says "Jimmy Buffett ate at this
table." No better way to end the day.
We are heading back to Raleigh this morning, a day earlier than planned, so
I will be there for the biopsy tomorrow. We are supposed to hear the results
on Wednesday. The lung surgery has moved to Friday to give us time to get
the biopsy results -- but it might not happen (depending on the biopsy
Lou says I have to get moving now because our plan is eat breakfast, check
out, go to the Angels and Demons movie, and then hit the road.
Posted by Karen at 9:17 AM 7 comments:
Friday, May 15, 2009
Live Long and Prosper
Lou and I had not been to a movie since May 2006 when we were visiting
Raleigh to decide if we wanted to move here. We saw Thank You For Smoking,
and it was great.
So last night when we got to Charleston, we walked down to the Hipodrome
near the Aquarium and saw Star Trek on a very big screen. We liked it a lot.
(We have been to Star Trek Conventions.) There were only four of us left in
the theater for the entire credits and the final "In Memory of Gene
Rodenbury and Majel Barett Rodenbury."
But you're not here for a movie review.
We got the call yesterday with the PET Scan results when we were about 100
miles from Charleston, and we almost turned around to go back to Raleigh.
There is a mass in my psoas muscle near L4 and I need to get that mass
biopsied before Dr. Feins will go ahead with the lung surgery.
So the doctor asks, "Have you had any low back pain?" And I am like "No,
no... oh but my left hip aches so much some nights I cannot sleep." Bingo.
Why did I never think to mention that to anyone?! Argh!
Carol Q, can you remember what month it was that I begged off our lunchtime
walk outside Building T because my hip hurt? That is the first time I
remember hip pain, and maybe the doctors would be interested in knowing when
So we are waiting to hear right now if we are headed back to Raleigh TODAY
for the biopsy or if it will be on Monday. We have the day planned:
sightseeing... or just driving home right quick for a medical procedure.
Keep ya posted...
Posted by Karen at 8:10 AM 5 comments:
Wednesday, May 13, 2009
No News Is Good News
With my imagination, sometimes no news is no good.
I had the PET Scan on Monday and by golly I was ready for the results on
Tuesday morning. The nice lady who answered the phone at the doctor's office
told me that it would take two days for them to get back to me with my
results. I'm no mathmetician but Tuesday plus two equals Thursday. How could
I wait till Thursday?
Luckily I have been very busy at work. I have been trying to finish
EVERYTHING which is just silly. At some point today, I gave up and decided
to finish just two medium-sized tasks. The rest can just sit there and wait
for me to get back.
And now I am officially on vacation!
Lou and I are driving to Charleston, South Carolina, tomorrow morning for
four days of relaxation, fun, and sightseeing. Thanks to April, I know that
there is a Tea Festival this weekend near Charleston. Thanks to several of
you, I know that I have to eat shrimp and grits.
I am looking forward to temporarily forgetting about all my troubles.
What I won't forget is how great I feel tonight after reading all your
comments and email. I can't thank you all enough for reaching out to me and
helping me feel loved. I know I can handle whatever happens.
Posted by Karen at 9:15 PM 5 comments:
Monday, May 11, 2009
Messed Up One Test by Laughing
I am not a morning person, so I wasn't very happy when the alarm went off at
5:30AM and all I could have for breakfast was a cup of water. But I was
looking forward to passing these tests and knowing for sure that I will have
surgery on May 20.
Today was a nice cool rainy day, in the high 50s, which reminded me of
summer in Seattle ;^)
For the PET Scan, this student nurse did a great job starting an IV in my
arm so she could give me sugary radioactive saline. When the syringe with
the radioactive stuff arrived, it was in its own little impressive
lead-shielded container but no one had to put on a lead apron or anything. I
had to sit around for an hour waiting to become radioactive enough, so I
said the rosary and then finished reading a romance novel.
The PET Scan iteself went fine. I am a teeny bit claustrophobic but luckily
what makes me anxious isn't being jammed into giant tight medical equipment
but being trapped in small crowded waiting rooms or stuck in line with too
many people at Costco.
When it was all over, I bid my student nurse a pleasant goodbye and headed
for the elevators and my next test. But then I realized that I still had the
IV plug in my arm. So I had to talk to the receptionist, who had to track
down my student nurse, who dragged me back down a quarter of a mile of
corridors to the treatment room and removed the IV. Hope she didn't get in
trouble for that.
The PFT (pulmonary function test) was next. The technician, Ray, kindly let
me wolf down a granola bar and more water before we started. I have done
spirometry tests before at the asthma doctor, but this guy was much more
serious about it. I think I did the hard test six times, and the easy test
three times. Plus he clipped my nose shut so all my air flow would go
through the machine. And he made me laugh which messed up my ability to
"blow, blow, blow, blow, don't stop, keep blowing!" The interesting part is
that taking four puffs of albuterol didn't really have much of a positive
impact on my numbers. (Well, I found it interesting.)
I do not know how long it will be before I hear the results.
Patsy and Omer arrive tomorrow! I must go make up the guest room now. I am
so glad that my parents are coming. Patsy is addicted to Animal Crossing,
and because Omer is a Good Husband, he is carrying her Wii onto the plane so
she can play while she is here. Apparently there is a lot to do to keep her
town going and earn more bells (I have no idea), and she doesn't want to run
the chance of getting cockroaches in her house because she stayed away too
long taking care of me and Lou!
Posted by Karen at 1:15 PM 9 comments:
Sunday, May 10, 2009
Two Tests Tomorrow
I will spend tomorrow morning at UNC Chapel Hill taking two tests that I
have to pass before they'll do the surgery.
The first test is a PET scan. They want to make sure that there isn't cancer
everywhere or some big tumor hiding somewhere. I guess the idea is to find
out if there is anything else we need to take care of before we focus on
these four little nodules.
The second test is a PFT (breathing test). Because I have asthma, they want
to make sure that I am okay for lung surgery. Have I mentioned yet that they
will staple my lungs back together after they cut off the nodules? that I
will leak air for awhile? and that I will have a tube on each side coming
out of me so the air leaks to the outside and does not fill up my chest
cavity? [yick] I wonder if the tube will whistle when I laugh.
Wish me luck on Monday at 8:00AM and then at 11:30AM!
Send me good thoughts!
Posted by Karen at 8:51 AM 17 comments:
Saturday, May 9, 2009
What a Long Week!
On Monday morning, Lou and I met Dr. Richard Feins at UNC and were really
impressed. He told us all about the CT scan results and how he plans to
remove the four nodules on my lungs. I am easily grossed out, but it was
nice how animated he became when talking about all the cool technology he'll
be using on me. It will be minimally invasive, thank God. He is going to go
in between my ribs with a scope and a video camera. Oh, but first I have to
pass a couple of tests next week. More on that later.
On Monday afternoon, I used email to step down from all my committee chair
positions because I really want to be able to focus on getting better --
without worrying about agendas and deadlines and making decisions that
affect other people.
On Tuesday, I talked to my boss and started the ball rolling for short term
On Wednesday, I told a lot more people and then watched a lot of Stargate
SG-1 episodes via Netflix and pretended that nothing was wrong in my life.
Lou was really busy cancelling all our summer vacation plans and then
booking us a sweet quick trip to Charleston SC next week! Yippee, four days
of fun before all heck breaks loose! (Have I mentioned yet that I am married
to the best guy on Earth?)
On Thursday and Friday, I worked super hard because I realized how much
stuff I should finish before I disappear temporarily from work.
On Saturday I slept late and then surfed the web trying to figure out how
the heck ya start a blog.
Posted by Karen at 4:43 PM No comments:
Karen's Cancer Back story
In January of 2007, I had a hysterectomy because I had lots of girl trouble
caused by lots of fibroid tumors. Fibroid tumors, nothing to worry about!
But when the pathology report came back, it said that they had also found a
huge leiomyosarcoma embedded in the wall of the uterus. Oooh, bad news. But
at least it had already been removed.
So I did chemo from February of 2007 to June of 2007.
The July 2007 CT scan and a bone scan showed no sign of the cancer! Yippee!
I started getting chest x-rays at 3 month intervals, and they showed no sign
of the cancer...
In October 2007, I had fabulous laparoscopic surgery to repair a hernia from
My regular chest x-rays continued to show no sign of the cancer.
The party finally ended on April 4, 2009, when the regular chest x-ray
showed "a spot" that the oncologist did not like. So they sent me for a CT
scan. The April 23, 2009, CT scan showed four nodules on my lungs, two on
the right and two on the left. The best thing to do with leiomysarcoma is to
get it out of there as quickly as possible.
That is where we are at now: getting ready for surgery.
Posted by Karen at 3:22 PM