t2.bmp (300054 bytes)  2012

2012

 

Saturday, August 4, 2012
Bedridden
Sorry it took me so long to update here.

I am spending almost all my time in bed, asleep.

All my work friends lunches are already cancelled.

My hour visits are being cancelled.

All my weekend visits are being cancelled.


However, I have a backlog of lovely cheery photos to post here. Hope to do it ASAP.

Love you,
Karen


Sent from my Verizon Wireless Phone


Posted by Karen at 2:27 PM 49 comments:
Wednesday, August 1, 2012
Watching Olympics on DVR
I woke up at 3:00am feeling okay.

I stayed in bed for an hour and a half, but now I have been up for an hour watching yesterday's Olympics with Lou.

Right away, I had a bite of coffee ice cream. Nice way to start the day after not eating hardly nothing for a week.

Lou made me an egg, and I ate half. Waiting to see if I barf.


Sent from my Verizon Wireless Phone


Posted by Karen at 6:00 AM 9 comments:
Test Post

Am I still having trouble posting from my phone?

Karen


Sent from my Verizon Wireless Phone


Posted by Karen at 4:25 AM 7 comments:
Tuesday, July 31, 2012
Feeling Better
Today I made progress and feel better.
Rough day though. Lots of stuff for my parents to help with. Don't want to be more detailed than that.

Also met and really liked Lawanda my aide. Helped me bathe. Oh how the mighty have fallen hee hee hee!

Watched about an hour of Olympics tonight with Lou.

Because I am unable to post from my phone I am using Lou's.

So if you want to see updates from me then you should scan the comments for the current post. I have no trouble with making comments from my phone.


Sent from Lou's Android phone.

Posted by Karen at 8:13 PM 4 comments:
Monday, July 30, 2012
Three Bad Days
Just wanted to get it out there that since Saturday afternoon, I have been miserable with nausea and stomach pain.
My friend Marguerite helped on Saturday, and today hospice nurse Judy set up new meds.

Hard to talk on phone when so miserable. Texts are easier.

Parents are here and Patsy babysat this aft.


Lou,
Sent from my Android phone.

Posted by Karen at 8:19 PM 14 comments:
Testing
This is a test to see if we can post from Lou's phone.

Lou,
Sent from my Android phone.

Posted by Karen at 8:08 PM No comments:
Sunday, July 29, 2012
Used the Walker for Saturday Lunch Outing
Sue and Irv took us out to lunch on Saturday.

Originally, we were planning to try Irregardless Cafe in Raleigh. Although we've seen many rave reviews, neither Lou nor I had ever been. Sue and Irv have been and have enjoyed it.

But at the last minute, we changed the plan. Because it's a brunch, it might be a buffet, and that would have been impossible with the walker. (I have been awfully unsteady on my feet for the last few days. Thank God, weeks ago, Gerry lent us Joe's walker; it's a godsend.)

We went to Tripps instead.

Lunch was excellent. Conversation was excellent. And, although we made a flood of special demands, our waitress was excellent.

When I say the conversation was excellent, I mean so engrossing that our waitress found it near impossible to interrupt Lou and Irv when she returned with additional questions.

Posted by Karen at 6:56 PM 3 comments:
Saturday, July 28, 2012
Editors Visit
On Thursday afternoon, my friends and editors, Tate and and Kathy, visited me. We had such a nice time! Tate brought gourmet peanutbutter dog cookies for Miss Bailey, who spent the visit hiding in the bedroom with Lou.

Here they are, pictured from left to right, Kathy and Tate.





It was especially funny to be receiving a visit from my editors who must "bless" the contents of my books before they can be published --- on the same day when I receive forgiveness for all my sins.

(I know which one is more important, but you've got to find the funny bits whereever you can.)
Posted by Karen at 9:53 AM 5 comments:
Anointing of the Sick
On Thursday morning, I received one of the Holy Sacraments, the Anointing of the Sick.

My hospice team found me Father David of St. Mary's. He was wonderful. I told him a little part of my story. I cried a little.

(Earlier that morning, as I reflected on what my expectations were for this appointment with Father, I realized that I was nervous! I decided not to be nervous. Instead, I would just follow Father's directions and let my heart and head both get whatever they needed.)

Father David explained the sacrament. What I took away was that the Holy Spirit would bring me strength and peace from Jesus, and absolution from God for all my sins.

I was very happy to be receiving total forgiveness for all my sins.

During the actual anointing process, tears streamed down my face. It was really a lovely experience. Then I received Holy Communion.

Of course, we sat in the sunroom. Talk about starting a room off right! Two sacraments in one day.

I mentioned to Father David that the room was being re-decorated and would be finished at the end of August. I got to articulate that my excitement was happiness in knowing that Lou will use this room for years and years, in maximum comfort and style, for conversations with friends, quiet contemplation of the different views of the golf course, reading books, and whatever else he comes up with...

Posted by Karen at 9:35 AM 6 comments:
Wednesday, July 25, 2012
Sofa, Rug, Lamp, Cheerfulness

Posted by Karen at 5:06 PM 20 comments:
Loveseat

Posted by Karen at 5:02 PM No comments:
Lasagna and New Furniture
[This was written at noon but technical difficulties delayed the actual posting.]

Today most of the sunroom furniture arrives!

Our designer, Celeste, has been here for almost an hour and a half, waiting for the moving truck. We have been chatting. Celeste also took the opportunity to walk around downstairs, looking for wall art to steal from other rooms and hang in the sunroom today. I am surprised that she found a metal-framed poster of a wheel-barrow filled with flowers. She and Lou think it will go great.

I AM SO EXCITED

But I ran out of steam and went to bed. I'll get up once everything arrives.

So, where does lasagna fit into the story? Tonight Darlene and Chaz are bringing us lasagna and the pleasure of their company for dinner. They'll be the first to see the new furniture.

We just need to keep the lasagna away from the sofa. No testing how much saucy pasta a Chinet plate can handle when held precariously over new uphoulstery...

Posted by Karen at 4:57 PM No comments:
Tuesday, July 24, 2012
Fantastic Lunch


I have been fast asleep since returning home from my lunch out with 24 of the best colleagues and friends a person could hope for.

In this picture, Anya was trying to get people to raise their arms to show off their Team Karen bracelets.

At one point, I told them that of course they were happy to see me because for once they were guaranteed that I did not have a list of questions for them to answer! Or "just a few" pages of text for them to review!


(The crazy pouring rain, thunder, and chirping uninterruptible power supply (UPS) boxes just woke me up, but I expect to have no trouble falling back to sleep. The power is out!)


Sent from my Verizon Wireless Phone


Posted by Karen at 3:57 PM 12 comments:
Firehouse Burger at Kickback Jack's


Before I fall back to sleep, here is Alex's picture of the delicious Firehouse Burger at Kickback Jack's.

A few of these were consumed (inhaled!) at our table, plus I got to bring one home to Lou.


Sent from my Verizon Wireless Phone


Posted by Karen at 3:44 PM No comments:
Feeling Much Better
The additional pain meds have turned things around. I feel much better.

I am going to lunch today with friends from work!

Right now, I am about to take a nap. Need to rest after choosing an outfit to match my pink Team Karen bracelet!


Sent from my Verizon Wireless Phone


Posted by Karen at 9:14 AM 5 comments:
Monday, July 23, 2012
Tough Times
I have been having a tough time the last few days.

For the past week, the tumor has continued to grow at a crazy pace. I maxed out my painkillers, but I was never actually pain free. That ate up my physical and emotional reserves.

Late Sunday morning, I crashed. I didn't even get out of bed to hug our dear friends goodbye.

We know how we feel about each other, and one missed hug won't change any of that. Thank God. Plus the entire weekend felt like a long sweet gentle goodbye.

I also cancelled two visits. I am not at the point where I want you to drop in for a visit so you can watch me sleep or or listen to me snivel :-)

Judy and Jenny (my hospice nurse and my social worker) came a day early because Lou asked them to.

I could not even get out of bed for them.

When they arrived, I was ready to barf from the pressure on my stomach.

Luckily, I had just showered and put on fresh clean PJs, so all I had to do was lie there and let Judy take vitals and ask questions.

Then I got new instructions. I am now taking the painkiller more often, and soon I will have a stronger dose.

Now, nap time.


Sent from my Verizon Wireless Phone


Posted by Karen at 4:03 PM 10 comments:
Saturday, July 21, 2012
"Team Karen" Bracelets



Heidi and Anya have been secretly cooking up a plan to raise people's spirits at work. They had awesome pink rubber bracelets made up that say "Team Karen" and "Cheer Me On."

I guess they started selling them yesterday, for two dollars each. Anya said they are selling like hotcakes, and now there are a bunch of people sporting the bracelets, including my boss's boss's boss Deva.

There is NO profit being made, and NO money being raised. It's just a way to say, "I'm thinking about Karen!" --- or maybe it's just a way to say, "I sure like pink!"

Last night, on her way home from the office, Anya dropped by to give us some bracelets. I was getting a massage at that moment, so I did not get to give her a big thank you hug, and one for Heidi too. You remember Heidi was here last Friday night for an hour, and she never dropped a hint that there was anything secret and fun in the pipeline. Sneaky Heidi!


Do you want a bracelet?

They cost two dollars. Anya and Heidi are handling "sales and distribution." Please send email to this address:


anya@mcguirk.net


Posted by Karen at 10:30 AM 5 comments:
Bob and Sally Arrived Safely!

Bob and Sally are here for the weekend!

So if you are wondering why it seems as tho your texts or calls have been ignored, now you know why.

They flew in a few days ago and did some sightseeing in Virginia (I think). I probably shouldn't blog in the middle of the night if I am sleepy and lack facts.

But now they are all ours.

OK, whoa, I just WOKE UP holding my phone! I'm going back to sleep now. Tomorrow you can hear about these wonderful friends from the Seattle area.

But I will say that Sally's cheerful, spiritual cards and notes over these years of chemo have certainly cheered me on.


Sent from my Verizon Wireless Phone


Posted by Karen at 2:03 AM 2 comments:
Thursday, July 19, 2012
Fantastic Blue Diamond transportation
This has been an amazing trip. I feel really relaxed and happy --- and grateful.

I've already thanked Lou for being my perfect travel agent.

But none of this could have happened without my Blue Diamond limo.

Physically, I needed to be able to lie down and stretch out for the 3.5 hour ride. Scrunched in the back of a car would not have been good enough. Sure, I would have gotten here, but then I would've needed a day and a half to bounce back.

Fiscally, taking the limo would have broken the budget at $1800.00.

But our neighbor Bob is their Senior Driver, and he talked to Carrie Peele.
Bob says that Carrie does a lot with the American Cancer Society in North Carolina, and knows how to deliver joy to a person in need.

I dunno if I'm supposed to spill the beans on the screaming deal she gave us, but we are basically just paying the IRS rate for the limo ($520), plus whatever we give our buddy Bob.

If you're in need of a limo, do me a favor and consider using Blue Diamond as a way to thank them for me.

www.BlueDiamondLimo.com


Oh great, now I am a little choked up.


Sent from my Verizon Wireless Phone


Posted by Karen at 11:34 AM 4 comments:
Sunroom Update
Most of the furniture for the sunroom arrives on July 25.

The leather chair and a couple of end tables arrive mid August.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:47 AM 1 comment:
Restaurant Review
I am pretty much done packing up.

When you do no shopping during a trip, packing to go home is greatly simplified.

The lobby also has a coffee shop that brews Starbucks coffee. Every day, the Verona drip was available. Lou was so happy. He's been humming "My Sharona" the entire time.

The coffee shop also serves ice cream. Coffee ice cream is on the list. You know there must be something wrong with me, that I am only a little tempted.

Staff told us that they did a big refurbish last year. Well, it's nice. I love the variety of seating options in the bar and lobby. Several different couches and table/chair setups. You would be hard-pressed to not find something you found comfy.

Dinner last night at Vintage Twelve was super. Attentive but not annoying service. I ordered a lot and had a few bites of it all --- which meant Lou made out like a bandit.

I ordered the tuna tartare appetizer and the filet mignon entree with roasted asparagus and corn pudding. Everything was delicious.

I was nervous that the quail egg on the tuna tartare would be raw --- it was cooked sunny side up --- but I was confusing tartare with SUSHI.

I also got a bite of Lou's appetizer, an heirloom tomato and mozzarella on flatbread that was like a flying carpet to heaven. In exchange, Lou ate 3/4 of my steak!

Lou loved his shrimp and grits, but it was a small portion, so I think he appreciated the steak taking care of his big manly appetite.

All the food was "locally sourced." I don't know why I find bragging about that concept LOL funny, but I do. Why wouldn't you buy your tomatoes from Jim next door, instead of from Gary clear across the country in California? Your kids probably go to school with Jim's kids. Who's more likely to bring his wife for anniversary dinner at your restaurant, Jim or Gary? And which tomatoes will taste better, the ones that were rolling around in a truck for 3 days, or the ones that were still on the vine this morning?

Wow that was a rant.

I am 'sposed to be napping and charging my phone. In about 30 minutes, a bellboy comes for our luggage. Checkout is 11am.

Bob and the dreamy white stretch limo arrive around then.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:21 AM 3 comments:
Wednesday, July 18, 2012
Jeff Realizes He's on Camera


So now Jeff looks up and realizes Lou is taking pics of him, not the dog.

Hey, not to distract you from my handsome brother, but look at that freshly-painted yellow wall! Celeste from Bassett sure has an eye for color. Soon the furniture will arrive...

Sent from my Verizon Wireless Phone


Posted by Karen at 12:20 PM 7 comments:
Jeff the Artist


At some point last weekend, the guys were hanging out in the sunroom-to-be and I was sleeping.

Lou started taking pictures of Miss Bailey, and then got a few of Jeff.

Jeff was drawing. He draws these awesome quirky sketches.


Sent from my Verizon Wireless Phone


Posted by Karen at 12:07 PM 1 comment:
Pounding Surf vs Placid Pool
Yesterday morning, I tottered out onto the beach after breakfast.

The sand here is hard-packed and very flat. Even the dryest part of the beach is hard-packed, so I could walk on it without too much trouble.

Lou picked up one tiny perfect shell for me. Usually I spend hours hunting shells or rocks. But I don't feel bad about not being able to do that. With my stomach so swollen, I cannot bend over.

We dumped our stuff and went straight into the water. I hung onto Lou when waves crashed into us. We walked quite a way in and never really got deep.

When big waves hit us, I clung with two hands and turned sideways. I didn't really want to get knocked over.

We were laughing pretty hard.

Eventually, I floated for awhile with Lou as my anchor. I got battered! I got ground into the sand when the outgoing wave stole all our water!

Then a quick succession of three huge waves tossed me magically back onto my feet, and I was ready to get out.

We rinsed off the sand, got clean towels, got drinks, and found comfy chairs in the shade. Eventually we ate lunch. Then we went to our room and I think I slept all aft.

My pain is under control, but I am taking a lot of it. Thank God for painkillers.

Today, we are not going into the ocean. Today we will do pools. There will be no big waves or sand, but there are kids. Jumping, splashing, yelling, fun!

Plus, I downloaded 3 Nero Wolfe audio books (that I have never read) to my phone. Heaven.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:06 AM 5 comments:
Tuesday, July 17, 2012
Weather Report

The app on my phone says it is 72 degrees and cloudy, but that it feels like a party!

Lou and I are going down to the coffee shop for a hot beverage. (Usually I would run down alone.)

Talk to you later.


Sent from my Verizon Wireless Phone


Posted by Karen at 7:00 AM 4 comments:
Monday, July 16, 2012
Headed to Myrtle Beach


We are headed in style to Kingston Plantation Resort at Myrtle Beach in a fabulous Blue Diamond limo driven by our neighbor Bob.
The only way we could make this trip was for me to be able to stretch out. Lou just snapped this picture where I am lying on the comfy bench and I am reading another Nero Wolf mystery.

I was disturbed by the picture at first because it really shows how extended my stomach area is. But it is what it is.

I will post later to describe the kindness and generosity of our driver and of Blue Diamond. This company has strong ties with the American Cancer Society and does a lot of good works.


Sent from my Android phone.

Posted by Karen at 12:39 PM 8 comments:
Sunday, July 15, 2012
Early Breakfast at Brigs
Breakfast was fun, and now I'm sitting in the air-conditioned car outside Bruegger's Bagels.

Lou and Jeff are in there picking up bagels so we can re-stock the freezer.

John's driving Jeff to the airport at like 4:15.

Got to make the best of these 6.5 hours!


Sent from my Verizon Wireless Phone


Posted by Karen at 9:30 AM 2 comments:
Massage at Home
Martha from Avante Physical Therapy does massage house calls!

On Friday, I could not get into the office, so she came to me. (She has her own business as well as being an employee of Avante.)

Because I cannot lie on my stomach at all anymore, I thought that I'd have to have the massage sitting up. Instead, she had me lie on my side (first on the right, and then on the left).

It worked great.

She used less pressure than usual but still worked out all the knots. I felt wonderful afterward.


Sent from my Verizon Wireless Phone


Posted by Karen at 3:36 AM No comments:
Saturday, July 14, 2012
No Time to Post!
I am having so much fun with Jeff, I don't want to waste any time telling ya about it!

I'll give you all the details later.

Oh, and I also need to mention how much fun it was to see Heidi, Chris, and Gul on Friday evening.

Right now I am sitting in the air conditioned car in the Harris Teeter parking lot while Jeff runs in for oyster crackers for our lunch, New England clam chowdah that he hand carried onto the plane from Massachusetts!



Sent from my Verizon Wireless Phone


Posted by Karen at 2:01 PM 5 comments:
Friday, July 13, 2012
Jeff Arrives Today
Was I tempting fate when I asked my brother, Jeff, to fly to see me on Friday The Thirteenth?!

Yikes. Let's hope there are no mishaps, misunderstandings, misadventures, or misrepresentations.

I am totally psyched about seeing Jeff. I am so excited I am about to fall asleep.

Really. I need a nap.

Around lunchtime, John is dropping by for a quick visit --- then he and Lou go to the airport to get Jeff.


Sent from my Verizon Wireless Phone


Posted by Karen at 9:44 AM 3 comments:
Dinner Guest Does All the Work!
Thursday is, of course, Poker Night for Lou, so I made plans for my good friend, Barbara, to come to dinner and hang out with me.

I was TIRED (but not in pain) when she arrived close to 6:00pm.

The menu was seared salmon and French green beans from the Kitchen Miracle (or Miracle Kitchen?) dinner service.

Meredyth and other friends from work sent me dinners weeks ago, and so we are finally eating them. Yesterday I had soup that blew my mind. Tonight, the salmon was very very good. Can't wait to try the other items soon.

Barbara did all the work, while I called out general instructions from my perch on the couch.

And she cleaned up the mess afterward!

We had a nice heart-to-heart about what's going on with me. I met Barbara soon after arriving in North Carolina in August 2006. Her friendship has meant a lot to me.

We also talked about how there is no "Best If Used By" date stamped on my foot --- that I have no idea how long this will last.

I am supposed to pay attention to how I feel today, and then do whatever I can handle or whatever I would enjoy today. I guess you could say I am living my life "one day at a time."

Right before 8pm, Barbara helped me put clean sheets on my bed, because it's too hard to do alone. Thanks so much!!!

I got a huge hug, and she left, and I immediately popped into bed and fell asleep.

Sure, I woke up a little while ago, but now that I have had this chance to update you, I'm sure I'll fall right back to sleep... maybe right after I check WWF.


Sent from my Verizon Wireless Phone


Posted by Karen at 1:19 AM 2 comments:
Thursday, July 12, 2012
Myrtle Beach
I love the sounds of the surf, the ocean waves lapping on the shore.

Growing up in New Bedford, Massachusetts, right on the coast, I spent lots of time at the beach. Lou grew up going to Miami Beach!

We figure we can get at least one beach trip in during hospice.

We sure have nice beaches here in North Carolina! But I wanted to go somewhere new.

That's why I kept thinking about Bermuda's pink beaches. But realistically the flights would be too hard on me.

Lou figured out a way to get me to Myrtle Beach in a white limo!!! I can stretch out on the back seat, totally comfy, for the 4 hour drive.

Next we had to find a nice resort where I can plunk down in a lounge chair in some shade and not move for hours, if need be.

Our friends Gail and Mo suggested that we look at Kingston Plantation Resort in north Myrtle Beach, and it looks perfect.

So that's where we are headed.

I will be able to walk as little or as much as I want.

Worst case scenario, if I never make it out of the hotel room, I can watch the Atlantic Ocean from the balcony.

Picture me on the balcony, looking down at a tiki bar, trying to figure out which little person down there is Lou. He's the guy drinking margaritas and beating me at Words With Friends. (As if he would leave me alone for in a minute!)


Sent from my Verizon Wireless Phone


Posted by Karen at 7:58 AM 13 comments:
Wednesday, July 11, 2012
Vanpool Visit
On Monday evening, my friends from my old vanpool came to see me. Lou took our photo, as proof! From left to right: Joe, Rick, Jane, me, and David.




The vanpool was excellent in terms of saving money and helping the environment and keeping my workday to a predictable time schedule...

But what really made the vanpool outstanding were the people! There was always something interesting or hysterically funny being talked about. I remember looking forward to my commute, especially in the afternoon, because it was just plain fun. (Not being a morning person, I obviously struggled in the morning.) Plus, it was pretty cool to meet other people, from other departments, some of whom have been working at the company for a loooong time.

On Monday, we spent a lot of time enjoying the view of the golf course. David has golfed here, and he said that our house is easy to hit, but he stopped short of actually saying he ever hit us.

These folks entertained me for about an hour and left before I got too tired.

Just over my shoulder, you might be able to see a vase full of sunflowers that they brought. Very pretty! I just freshened up the water, so we'll be able to enjoy those flowers tonight when some other friends from work drop by.

Posted by Karen at 12:01 PM 11 comments:
Tuesday, July 10, 2012
Bigger Pants
Yesterday afternoon, Patsy and Omer flew back to Arizona to close up their house, pack their stuff, and get ready to drive back here. They're moving into their furnished apartment on July 30. Yahoo! It was really easy to let them go home yesterday, knowing that they would be back in a jiffy.

Nick and Sharon from across the street drove them to the airport in the rain. Nick popped his head in our front door when he got back to let us know that he had delivered them safely to the airport. Shortly after that, Patsy called to report that they were checked in.

Now let's back up to early Monday morning. Because this was our last morning together for awhile, I made myself get up and take painkillers and be ready to participate.

We left the house at about 9:00am and drove over to the apartment complex. There is still a guy living in their apartment, so we knew we could not see it. But we toured around the parking lots and found the car wash station, trash collection area, pool, mailboxes, etc. It all looks really nice. And they are walking distance to the movie theater! Super! We also toured the entire mall area. There are a lot of good stores there.

Next, we headed to Cary. We had a coffee break at the Starbucks in the Crossroads shopping center. Once we were rejuvenated, we went across the parking lot to the Catherines clothing store because I needed bigger pants. My abdomen has grown a lot this week. Pants that were comfortable are no longer comfortable because they put pressure directly on the area where the big tumor is.

It wasn't easy, but I found some capris with giant gentle elastic waistbands and slim legs, so it does not look like I am wearing baloony clown pants. (I hope.)

Next we ran an errand for Lou. We got a super absorbent mat for outside the back door. We are hoping to stop Miss Bailey from tracking water and dirt into the house. We found something at BBB. Luckily, today we are expecting RAIN so we can test the new mat.

By this time, I was completely wiped out. I was in pain, stretched out on the back seat, too miserable to even fall asleep. Luckily, my Mom remembered that I was due for a painkiller, and she had one in her pocketbook.

We picked up lunch and came home. I went to the Chinese restaurant to get Lou's lunch, and my parents went to Subway to get our lunches.

There was a very strange mixup at Subway. I wanted a BLT. I figured since I am eating so little, if I wanted a bite or two of a BLT then by golly why not. But when we got home, what I ended up with was a BACON only sandwhich. No lettuce. No tomato. Because I was so exhausted from being out for so long, I actually cried! (Poor Patsy felt bad for not watching the woman make my sandwich but honestly who would have expected to ask for a BLT and just get the B?!) I didn't cry for long -- I started laughing, because it was ridiculous.

Basically I spent the rest of the day in bed, in pain, trying to recover from the morning's over-exertion excursion. My vanpool pals dropped by at 5:00pm for a great visit, but I will have to tell you about that after Lou forwards me the picture we took.


Posted by Karen at 8:51 AM 10 comments:
Sunday, July 8, 2012
How Do You Do That?
Over the last few weeks, I've been showing Lou how I do various tasks around the house.

Like running the clothes washer for different types of loads: bedsheets vs. black tee shirts vs. towels...

Lou already does almost everything anyway. I really don't have that many jobs assigned to me.

Oh, one of my jobs was to scoop all the dog poop in the back yard the day before the lawn gets mowed. We hired the neighbor's kid to handle that one! (Did I mention how smart Lou is?)

Yesterday we ran through the dog's monthly anti-flea/tick/heartworm regimen.

First I give Bailey a prescription "cookie" for heartworm, and then I squirt the anti-flea oily goo between her shoulder blades.

The toughest part is removing the goo dispenser from the plastic packaging without leaking the goo all over your hands. (Explains why I have no fleas on me.)

Making squirmy Miss Bailey stand still long enough to get the goo out isn't trivial, either, espec if you are attempting it as a one-person job.

There is the rub: the one-person job. I am showing him all this stuff in preparation for when I won't be here anymore.

We hadn't actually talked about that aspect, till yesterday. It was just this un-said thing.

But I got a little upset yesterday.

Every month, for years, when I have done the flea thing, I have made a note with date and whatever is going on that day. It started just as a way for disorganized me to keep track of whether the dogs got their flea stuff done every month.

Like, one old note commemorates the first time Sam got the flea stuff as an "only dog" --- after Molly died.

Like, a more recent note says that Lou took Bailey for her first 3.5 mile walk, which explained why Bailey spent the rest of the day wonderfully asleep and therefore not underfoot at every turn.

Yesterday, I wrote that this was the first time Lou had done it all himself, and I drew a smiley face, even though I was actually a little teary.

So a few hours later, when Lou told me that he thought I had rushed him through the process a little, I admitted that I had been trying to hide being upset. I wasn't upset because I won't be there to squirt the goo and write the note. I was upset that I won't be there, period.

So we held hands for a little while, and I felt better.


Sent from my Verizon Wireless Phone


Posted by Karen at 4:35 AM 11 comments:
Saturday, July 7, 2012
FUN FRIDAY!
What a BLAST I had on Friday evening!

Basically, most of the people from my "scrum" meeting at work dropped by my house for some laughs and some beer and some snacks.

We tried to keep the plan quiet, so that we could keep attendees manageable.

Attendees were Alex, Anya, Arin, Emma (Mike's amazing toddler), Jerry, Lorna, Meredyth, Mike, Pu, Tao --- plus Lou, Patsy, Omer, and me!

Some very interesting beer was served, along with soda for us non-drinkers.

We all toured the downstairs and I got to show off the freshly painted walls of dramatic yellow, blue, and terra cotta. Plus the big bucket of golf balls we collected in the yard during that first year.

Everyone arrived just after 4pm so they had a great view of the golf course.

Poor Bailey had to stay upstairs and calm, so she missed the party.

I am so glad that Lou finally got to meet everyone on the team, especially Alex, after hearing about them for about 6 years!

Darn, we should have taken a picture. It was awesome to have the opportunity to hug all my good friends from work.

THANK YOU ANYA for arranging the visit! I looked forward to it all week.

However, right at the 2 hour mark, I was overwhelmed with exhaustion (even though people kept encouraging me to sit down and rest). Then I saw sparkly lights. Migraine! Everyone cleared our fast, and I immediately went to sleep for about 2 hours. Woke up feeling fine.

On Monday afternoon, my old vanpool pals are coming.

On Wednesday afternoon, a couple of other work friends are dropping by.

What a great week this will be.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:29 AM 2 comments:
Thursday, July 5, 2012
Secret Apartment Hunters
Unbeknownst to me, Patsy and Omer have secretly been apartment hunting so they they can stay here comfortably till this deal is over!

I guess Lou brought it up as an idea a few days ago, and they all wanted to make sure it was doable before bringing me in.

Our real estate friend Christina McCormack helped!

So they found a small, beautiful, furnished apartment by the White Oak shopping center in Garner, which is a 15 to 20 minute drive from here.

This is such a great plan.

I wanted them here, but couldn't see how to make that happen because it's just so hard to have long term "house guests," when you're so used to peace and quiet.

Plus there is now quite a lineup of people coming to visit, so the guest room at the Ross Ranch is booked.

The plan is that they stay here as scheduled till Monday and then fly home to shut down their house. Then they drive back here, in time to move into the apartment at the end of the month. And they stay here to help till it's all done.

Wonderful!


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Posted by Karen at 10:53 PM 11 comments:
Lou is Always Right
My current painkiller regimen is that I take an extended release (ER) pill every 12 hours, no matter what my pain level is. If there is any additional pain, then I can take an immediate release (IR) pill every 4 hours.

The ER pill works slowly, and the IR pill works quickly.

Last night, about an hour before I was due for my ER pill, I was pretty miserable. Lou suggested I take an IR pill, but I refused.

I can't explain why I refused. In retrospect, it makes no sense. Lou is a saint for having to deal with me.

So the pain got worse...

I took the ER pill as scheduled. Of course, it didn't help much because it's slow acting.

Lou again suggested that I take an IR pill, and I again refused.

This time, I refused because I could not remember being told how soon after ER can I have IR.

The pain got worse, and I went to bed. I said I would take the IR after an hour. An hour seemed reasonable. You have to wait to go swimming an hour after eating...

Exactly one hour later, Lou brought me an IR and I capitulated. Soon after that, things improved greatly.

This morning I called Nurse Judy and found out that it is perfectly okay to take the ER and IR simultaneously if I need to.

So Lou was right! Again!

I just wish in the moment I could remember that, and just do what he suggests.

Lou has never liked the idea of a tattoo, but maybe he would like "Do whatever Lou wants" on my forearm where I can read it.


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Posted by Karen at 1:12 PM 11 comments:
Up and Down
Last night, there was a lot of pain and misery. But today is good. So I guess my condition is "up and down."

I think I finally might make it to the Barnes and Noble today!

There has been a painter here all week. The sunroom is an amazing yellow! The laundry room is an amazing blue!

But we have run into trouble touching up the walls in the TV room. These walls go two stories high, and it's not in the budget to completely paint them, floor to ceiling. None of the paint that we have from the builder is matching.

So the painter got a fresh gallon color matched from Sherwin Williams, and we're hoping for the best.

I am not going to worry about it.


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Posted by Karen at 8:49 AM 3 comments:
Tuesday, July 3, 2012
Jeff is Coming!
Today just keeps getting better.

My brother Jeff just booked his flight to come see me!

I am thrilled that he's coming.

The last time I saw him was at Brian and Nicole's wedding in 2007. We have talked on the phone since then, though, hee hee.

So, he'll be here next weekend.

(Too bad he couldn't work it out for this weekend, while my parents are here, because it would have been a mini Granger reunion.)

Happy Dance!

I am back in bed, so the happy dance is more like a happy wiggle.

Status Report: I'm taking a nap now. P and O are off getting the car serviced. Nurse Judy will be here for my weekly hospice checkup some time before noon. Lou is supposed to be working, but I can hear him out in the kitchen shooting the breeze with the painter.


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Posted by Karen at 9:38 AM 14 comments:
Feeling Much Better
I woke up this morning feeling a thousand times better than last night.

I am well rested and absolutely nothing hurts. I was even HUNGRY so my Dad made me one quarter of a salmon bagel! Yum.

I just wanted to get that news out ASAP.

Last night, I wish I had remembered, "This too shall pass."


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Posted by Karen at 7:42 AM 5 comments:
Monday, July 2, 2012
Spending a Lot of Time in Bed
Gosh, I am exhausted and spending a lot of time in bed.

My big outing today was to go buy a pair of pants that have a waistband that won't put pressure on my abdomen.

I have lost weight, but my abdomen continues to swell because that tumor continues to grow.

At a Catherines store, Patsy and I found perfect white capris, very soft cotton, very wimpy waistband.

For the last few hours I have been really uncomfortable, I guess it's pain, from the continued swelling.

This is all bad news. Perhaps things are progressing faster than expected.

Sorry I don't have better news for you.

Lou is great. He takes my hand, and I feel better. And it helps so much that Patsy and Omer are here.


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Posted by Karen at 9:36 PM 11 comments:
Migraine with no Meds
On Sunday afternoon, I went for an outing to visit some girlfriends in Clayton, and I went empty handed.

I did not bring a plate of cookies. I did not bring my pocketbook.

And so when the migraine started, I had no Maxalt. Bummer.

I decided to suffer quietly, because the plan was to stay for an hour only anyway. Plus we drove 30 minutes to get there. And I figured that the morphine ought to help keep the headache under control anyway.

So I sat through the sparkly lights and it wasn't too bad.

By the time I got home, the real headache had started, and I took Maxalt then and went to sleep.

When Lou brought my parents home from the airport, I got up and ate dinner with them.

Lou cooked the steaks, and they were excellent. Patsy handled the side dishes. Omer and I did nothing!

But I was unable to really wake up and be perky, and so I went right back to bed as soon as I could.

Today I woke up at 6:00am feeling really good!


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Posted by Karen at 9:53 AM 2 comments:
Sunday, July 1, 2012
Healing Touch Today
Amelia Vogler came to the house today for a visit and a Healing Touch appointment.

I really needed it!

I felt great afterward, and we hung out chatting with Lou for awhile. Lou was very very funny. But then I was suddenly exhausted, so Amelia split and I went to bed.

It was strange though. I zonked out for like 15 minutes, and now I feel good again and wide awake.

Maybe I should get up.

But bed is so comfy :-) especially now that I have two pillows. On Saturday night, at like 2:30am, I woke up with terrible lung pain. Somehow I knew if I had a second pillow, the pain would go away. So Lou, who is clearly a saint, ran upstairs and got me a second pillow from the guest room closet.


ZOMBIE UPDATE
Today I do not feel like an angry zombie. (Whew. Could not handle another day like that.)


HOUSEGUEST UPDATE
Patsy and Omer arrive early this evening, yahoo. We will have a week of fun. Luckily the insane recording-breaking heat wave ends today.
 

 Saturday, June 30, 2012
Not Sure about the Painkiller
I agreed to give the new painkiller till Monday, but I am not liking it.

The sleepiness has dissipated to be replaced by a kind of irritable depressed zombie mood.

I am going to try to go to sleep right now. Let's put this whole day to bed.


Remember, I said a couple of posts ago to feel free to call me. Don't IM that you wanted to call but blah blah blah :-)


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Posted by Karen at 8:55 PM 3 comments:
Friday, June 29, 2012
Oh Yuck
I have always loved sleeping on my stomach, but I haven't even tried to since my last PT appointment.

During that appointment, I had to lie on my stomach for some back massage. The pressure was too much, and I had to sit up. It was discomfort and nausea from that tumor squashing my stomach. Luckily, Jaime could finish the massage with me sitting up.

Tonight I thought I'd try sleeping on my stomach because I just could not get comfortable on my side.

Within 30 seconds of rolling over, I experienced a horrific sort of burp and had to sit up in bed.

I immediately drank some water, but had to rush out to the kitchen so I could swig some gatorade to get rid of the taste. Yikes.

I will not try that experiment again.


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Posted by Karen at 11:49 PM 2 comments:
New Painkillers
Over the last week and a half, I have had to decrease the time interval between doses of oxycodone from 8 to 4 hours. Otherwise, I was in pain.

So I asked Judy, my hospice nurse, what my next step ought to be. A higher dose of oxycodone, or try another drug?

She consulted with their pharmacist and came up with a plan. It's something for me to try, to see how it works.

Basically, I would switch to morphine, and have extended release pill every 12 hours, with the availability of immediate release pills as needed in between.

She ran the plan by me, and after I agreed, she sent the paperwork to Dr R, because he's the one writing prescriptions.

I made the switch yesterday. I was virtually pain free. That was awesome.

Plus, I didn't have to even think about pain for 12 hours. (With the other drug, every 4 hours the pain crept back up on me, so it was always in my face.)

But I was really sleepy. I slept for most of the day.

Part of that sleepiness might have been needing to rest after the excitement of Tinalynne's visit --- but part of it had to be the new painkillers.

Judy warned me that it might take a couple of days to adjust.

Today I am just a little sleepy. But mostly what I feel is a little wobbly on my feet. Not enough to feel as though I might fall, though. Do not want to fall!


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Posted by Karen at 9:23 AM 8 comments:
Thursday, June 28, 2012
Tinalynne Left for Home
At about 6:00 this morning, Tinalynne hugged me goodbye and headed for the airport with Lou and John.

We had a long tearful goodbye last night, so this morning we had agreed to have a light "Safe journey" type of goodbye.

Spending two full days with Tinalynne was super awesome. Lots of laughs, some tears, and some amazing memories.

Plus it gave me a chance to give her a few things that I wanted her in particular to have. We laughed at the idea that she could ever need a thing to remember me by, which is pretty silly, but it just makes me happy to think of her using certain things in her daily life.

I loved being able to talk about her new social worker job, which is not so new any more. Tinalynne is really good at ferreting out what is wrong with you (not exactly the politically correct way to describe her skill set) so being a social worker and therapist is perfect for her.

After they left for the airport, I went back to sleep for hours. And I'm crawling into bed again now. I think I just have to rest after an exciting two days.

Part of the exhaustion is emotional, I'm sure. You'll notice I'm not giving a lot of detail about what we discussed and how I felt. I do feel supported and loved in my choice to go to hospice, I'll give you that much.



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Posted by Karen at 1:29 PM 4 comments:
Wednesday, June 27, 2012
More Shopping Fun
We went shopping again today.

Tinalynnne is an LICSW therapist with actual clients. She gets dressed up for work (could you trust you therapist if she looked homeless?) so we shopped again today for dressy clothes.

So much fun!

But now I am lying in the back seat of the car resting. We used up all my energy. Maybe it was all the laughing! But laughing is so rejuvenating.

Our lunch plan is to bring home takeout from Genki.

Lou called to report that hospice is delivering a wheelchair and oxygen tank, which is sort of weird because we never discussed oxygen.

Tinalynne says she told hospice that they could not deliver equipment until it was needed. That is cool. I will implement that strategy too.


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Posted by Karen at 12:06 PM 6 comments:
Tuesday, June 26, 2012
In Heaven
I am in heaven, in a dressing room at Nordstrom, at South Point Mall, while Tinalynne tries on clothes.

There is a padded bench, thank God, and I am lying down because I am wiped out already.

We are the only people shopping right now so we have the undivided attention of the sales lady.

Heaven, heaven heaven!


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Posted by Karen at 10:46 AM 9 comments:
Monday, June 25, 2012
Happy Hospice Nurse
Judy walked in with a smile on her face and a genuine outpouring of warmth, compassion, and professionalism.

I knew right away that she would be the perfect hospice nurse for me.

Thanks, everyone, for your supportive comments. They helped.

That's all I have for now. I am actually sort of wiped out. Going to watch some trash TV now...



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Posted by Karen at 3:40 PM 10 comments:
Burned Out Nurse?

The hospice social worker and nurse came out to talk to us.

The social worker was great and described their services very clearly. But the nurse sort of freaked me out.

She was loud and brusque and very businesslike. When I looked into her eyes I didn't get any feeling of warmth or friendliness or emotional connection at all.

I was in a huge dilemma. My nurse friends had all led me to expect a warm caring person with whom I would establish a relationship and come to lean on in this difficult time.

So I am sitting there wondering how the heck to handle this. Rules of politeness say I cannot say, "I don't like you," but choosing my hospice nurse is too important to mess up.

I really feel like I no longer have to do things I do not want to do, deal with people I do not want to deal with... because I have limited time left.

So I apologized but made it clear that I felt no rapport with her and did not expect that to change. I said it was an intangible thing, nothing she said or did in particular.

The social worker said she could send another nurse. Then they left, and Lou stayed outside for a couple minutes talking to them. I wondered if he was having to apologize for my behavior...

But when he came back in, his first words were to say that he completely agreed with me and that I was really brave to express that.

We decided that if the next nurse is also unfriendly, we will call Duke Hospice instead.

The next nurse comes today at 2:00pm.

(My parents suggested that maybe this nurse is just burned out.)

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Posted by Karen at 12:40 PM 7 comments:
Monday's Agenda
1 Meet hospice nurse

2 Do minimal ironing so I have something to wear

3 Tinalynne arrives late tonight from Montana


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Posted by Karen at 10:02 AM 4 comments:
Okay to Phone Me
If you have my phone number, and you want to call me, please feel free to do so.

When we first realized it was time for hospice, we couldn't handle any phone calls. But that doesn't apply any more.

So, if you want to call, then call!

Don't worry about waking me up from a nap, or bothering me when I don't feel good. If I don't want to be disturbed then I power off my phone.

But don't call after 9pm --- which is sort of tough on our West Coast friends.

There will come a point when I stop taking calls. No idea when that will be. Better get your call in before then.


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Posted by Karen at 9:59 AM 2 comments:
Sunday, June 24, 2012
Dismantling My Office Today
Today, Darlene is driving us to my workplace so I can dismantle my office.

Actually I hear that all my stuff is already packed up. April packed up for me back when new carpeting was installed in the entire building. Then nobody ever unpacked.

The tricky part is that I want to bring home just a few select items. I want to abandon the rest!

So I'll have to dig through those boxes to find what I want.

I am also delivering a few select items to a few select people.

The rest, I am either throwing out --- or leaving for people to scavenge through.

It would make me happy to think that my magnets found a good home...

Or that maybe someone on my team took my glass shoe collection as a momento of the hours they spent trying to explain things to me...


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Posted by Karen at 10:56 AM 10 comments:
I am no doctor, but...
I wonder if having that tumor biopsy on February 20th contributed to this insane growth spurt.

Like, we stabbed it and made it angry.

But there is no way to really know. And we were making the best decisions we could make, at the time, with what we knew.

Plus, having regrets about choices we made, blah, that's not useful at all.

But this idea started swimming around in my head. The best way to get rid of it is to post it and let it go.


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Posted by Karen at 10:44 AM No comments:
Saturday, June 23, 2012
Time Crunch
Today we went to Bassett Furniture to sit on the sofa and chair we want, and everything was super comfortable.

Well, Lou and Cindy and Mike all agreed that it was comfy. I was uncomfortable and tired. I was ready for another painkiller, actually, and ended up lying on the sofa, which was comfy.

When we left, I took my painkiller exactly on time, 4 hours after the last one.

We ended up purchasing everything we need for the sunroom, based on recommendations from fabulous Celeste, our design consultant. Gosh this room will be so nice. You will have a comfy seat and pretty view no matter where you sit.

Usually it takes 30 days for custom upholstery, but Lou asked for a quicker time frame, since I'm in hospice now.

The furniture will be delivered in 3 weeks, instead of 4 weeks! Yippee!

The sunroom has always been our favorite space, and now it will be beautiful.


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Posted by Karen at 1:45 PM 4 comments:
Thursday, June 21, 2012
Tumor Doubled in Size
No wonder I can't eat anything.

The tumor near my stomach has MORE than doubled in size and is squashing my poor stomach terribly.

This is really really bad news.

This tumor is growing very aggressively.

Strangely, all the little tumors in my lungs pretty much stayed the same size. But even though that is great news, it's not enough to cancel out that the other tumor grew so much.

Dr Reidel explained my options. For the first time ever, he talked about hospice as an option.

I got really choked up and asked if that meant we were giving up.

Dr R said hospice isn't about giving up; it's about changing the focus to make the most out of every day that's left.

He said it used to be that hospice wasn't mentioned till very very late, and then the patient was dead a week later. But there are studies that show that when hospice starts earlier, people live longer.

The hospice nurses are expert at managing the pain and quality of life issues to make the most out of every day.

Can you tell where this is going?

Of course, I could do chemo again instead. But the track record of this chemo is nothing to write home about.

Plus, after going through chemo SEVEN times already, I really am having a hard time with the idea of going through it again, especially since I am already so miserable and exhausted already on most days.

We did meet with the clinical trial protocol nurse to get the facts. It turns out I know and love this nurse (Lynn) from the Duke chemo treatment room! She just switched jobs.

But after hearing more details, I just became very clear that I am done with chemo. I just don't have it in me.

So it's time for hospice.

Please don't call me tonight. Both Lou and I are devastated and don't want to talk to anyone yet.

Leave me a comment instead!


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Posted by Karen at 5:52 PM 34 comments:
Migraine
I am lying on exam table in semi dark room with migraine waiting for Dr R to come in and tell me my results.

I am actually pretty comfy.


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Posted by Karen at 11:21 AM 4 comments:
Wednesday, June 20, 2012
Feeling Okay Tonight
I'm in a kind of limbo tonight, waiting for the scan results tomorrow.

What I mean is I don't feel anxious or scared. I just really want to know what is happening in there.

Based on how I have been feeling, I'm pretty sure the tumors have grown. So I am expecting bad news, it's just a matter of how bad.

We see Dr R at like 10:30am. I'll post results when I can.

Thanks for your support!


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Posted by Karen at 10:24 PM 3 comments:
Tuesday, June 19, 2012
Woke Up With the Birds
Serious stomach pain woke me up this morning at 5:30am.

Nurse Heather had said to manage that pain just like the back pain, so I took a pill instead of just suffering with it.

And now I feel completely fine.

Thank God. I have to go to Duke for my CT Scan today, and it would be a much more difficult outing if I am miserable.


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Posted by Karen at 6:40 AM 5 comments:
Monday, June 18, 2012
Scan Day Tomorrow
Tuesday is Scan Day.

Our neighbor Carl is driving us up to Duke for the CT Scan.

We'll hear the results from Dr R on Thursday.

Right now, I am in bed, exhausted. It was a pretty good day.

For dinner, I ate about a half cup of cream of something orange-colored soup, and I feel grossly stuffed. Totally freakishly Thanksgiving Dinner stuffed.

The guys had Loy's homemade jambalaya, followed by ice cream. They are playing golf again early tomorrow morning.


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Posted by Karen at 9:20 PM 4 comments:
George is Here!

Our old pal George is here for a couple days!

Lou worked for George a million years ago at Pacer in Massachusetts. And they are working together now at Endicia in California.

The guys are golfing today and tomorrow. Well, George is golfing and Lou is driving the cart.

Lots of laughs when George is around.

Today I think is going to be a good day. Right now I am in bed, recovering from breakfast. (I feel awful for awhile after I eat.)

I just talked to Dr Reidel's nurse Heather, and she was very helpful and sweet. She suggested grazing little bites all day, taking painkillers, and especially staying hydrated.

I have not been drinking enough water, so I'm making an effort now.

So far today, I am not miserable! Yahoo!


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Posted by Karen at 9:47 AM 1 comment:
Saturday, June 16, 2012
Feeling Great
Inexplicably feeling great this morning!

I wanted to post that as soon as possible, because Friday was so awful.

No stomach pain, lung pain, hip pain, or back pain!

Well, okay, my lower back is tight and achy. And I am about to go for my walk, so soon I will be exhausted and headed for a nap.

But all in all, I am like a different person today.

Thanks for all the funny distractions you all sent me yesterday. Puppy videos, puns, jokes... they all helped me get thru the day!


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Posted by Karen at 9:58 AM 7 comments:
Friday, June 15, 2012
Plumbers in the Backyard
No, that's not code for constipation. There really are plumbers in the backyard.

They are installing an extra water faucet inside the fence for Lou's convenience. They are working right under the bedroom window. It's interesting to listen to them.

The painkiller is kicking in.

I didn't mention it before but this morning whenever I took a deep breath, I would have pain in a couple spots in my lungs, which I assume are the tumor spots. But now that painkiller is kicking in, those pains are gone.

On a day like today, it's hard to blog. It's hard to find something cheerful to include in the report. I can sort of imagine that it will be harder in the future. However, I do expect things to improve when I start the next chemo. It will beat back the cancer.


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Posted by Karen at 9:56 AM 4 comments:
Cheer Me Up
I am miserable right now.

I had a tough night. My stomach hurt so much, it kept waking me up. Plus my left hip is killing me.

So it's a combination of stomach pain and constipation from the painkillers.

I tried to make myself walk around the house, but right now I am curled up in bed, just basically enduring minute by minute.

I could use some cheering up.


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Posted by Karen at 9:29 AM 2 comments:
Thursday, June 14, 2012
Better Today
Just woke up hungry, stomach does not hurt, hip does not hurt! Happy dance!

Lou just left with Bailey for a 2 mile walk to the gate.

I have PT this morning.


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Posted by Karen at 8:00 AM 3 comments:
Wednesday, June 13, 2012
Blah Morning
Last night, I slept 11 hours!

You'd think I'd wake up bright-eyed and bushy-tailed, but no. I woke up with a stomach ache and left hip pain.

I drank the tea Lou made me, but couldn't face breakfast.

At 10:30am, a design consultant from a local furniture store is coming to see the sunroom so she can suggest how to furnish it. So I need to be showered and functional for that.


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Posted by Karen at 9:11 AM 1 comment:
Tuesday, June 12, 2012
Can't Eat Much
I don't think I have said anything about how I have been eating small amounts since coming home from the hospital.

For example, for breakfast, Lou might make me two eggs and one small toast, and it's a struggle to eat the toast and the yolks and a little eggwhite. Then I feel grossly full for awhile.

At first I thought my small appetite was a result of the surgery, but then I realized I was eating even less as time passed, instead of more.

So I started to wonder if perhaps the tumor between the pancreas and liver had grown and was pushing on my stomach, making me feel artificially full.

I ran that idea by Dr R yesterday, and he agreed that it was possible. We'll know when we do the next scan.

Currently the next scan is set up for next week, but we talked about pushing it out one week because I am still sort of weak. We need to be able to jump right into chemo after the scan, so I shouldn't be weak.

By weak, I mean still sleeping a lot during day and still not walking very far.

Hey, this morning I walked to the top of the hill again! It was Mary Beth's comment from yesterday that prompted me to do it. Otherwise, I probably would have wimped out and skipped the walk altogether because I have PT at noon. Thanks, MB!


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Posted by Karen at 10:31 AM 1 comment:
Monday, June 11, 2012
Top of the Hill
I made it to the top of the hill today!

I walked all the way up the hill, pretty slowly, but I made it. Lou and Bailey accompanied me as usual.

My back was fine during the walk. So I guess my stamina is improving.

I still have a funny gait. I will ask Jaime about it tomorrow when I have PT.


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Posted by Karen at 10:40 PM 2 comments:
Friday, June 8, 2012
Good Day
It's still early, but today is shaping up to be a really good day.

I woke up at 6:30 and caught Lou sneaking out to the hot tub. (I am still not allowed to submerge myself in water yet.) His back has been bothering him, and the hot tub helps.

I felt pretty good and started my PT exercises. They were taking forever because I was just lying there not moving in between each set. I'd think, "Okay, let's go, lift that leg," and nothing would happen.

What finally got me moving was that Lou popped his head in the bedroom and asked me to make him a salmon bagel for breakfast.

I haven't made him breakfast in so long --- I am usually asleep till long after he's eaten. So I was psyched to be able to do it today. Plus he's always hungry after soaking in the hot tub, so I knew if I dilly-dallied too long, he'd make it himself.

After breakfast, my friend Julie dropped in for an hour to talk. We even walked to Joe and Peg's mailbox, very slowly of course. (My PT person verified that it was okay to walk up the hill.)

After my walk, I sat on ice and started feeling tired. So Julie split and now I'm back in bed, ready to fall asleep.

It's already been quite a full day!

And I feel a lot more cheerful today.


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Posted by Karen at 9:41 AM 4 comments:
Thursday, June 7, 2012
PT Wiped Me Out
Today I had my second PT appointment, and it wiped me out. When I awoke from a two hour nap afterward, I had nerve pain at my ankle. So maybe this appnt was a bit too ambitious.

Anyway, I spent the rest of the day up and down, iced and not iced. Oh, and I took a very short walk with Lou.

Now I am completely exhausted, in bed, ready to fall asleep.

I thought that I would be a lot more recovered by now. I am still sort of a wreck, and it bums me out. However, I realize that PT will do wonders. So I will do my exercises and make progress.


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Posted by Karen at 8:27 PM 2 comments:
Wednesday, June 6, 2012
Tummy Ache
I spent the morning sick in bed with a tummy ache and an empty bucket close by just in case.

At about 12:30 I woke up feeling a lot better. I did my three sets of stretches that PT Jaime gave me, and then I had a bowl of chicken soup that Lou heated up for me.

Then my back started killing me, which made sense, because it had been 16+ hours since I'd taken a painkiller.

I took a pill and crawled back into bed to wait for it to kick in. Rex Stout kept me entertained. That is, I'm re-reading "Three at Wolfe's Door."

So now I feel okay and have to get up. Lying around in bed all day is not good for ya.


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Posted by Karen at 1:48 PM 2 comments:
Tuesday, June 5, 2012
Physical Therapy
My neighbor, Peg, drove me to my first post-surgery PT appointment this afternoon.

I learned a lot. One really important thing I learned is to take only one walk per day.

On that walk, I need to listen to my body and let my back decide when the walk is over, instead of trying to stick to some arbitrary distance or time goal.

I got some simple stretches to do at home. And I pledge to do them.

Jaime evaluated my status, did some stuff to me, and then put me on ice, which felt great.

On the drive home, we stopped at the vet to pick up heartworm and flea pills for Bailey. They were $23 cheaper than the 1-800-petmeds price!

By the time I got home, I had nothing left. I walked so slowly into the house! I went straight to bed and slept till 8pm.

I woke up starving. Luckily, Brent and Lori had dropped off curry for dinner. There was some delicious pickled veg in the curry; I'm going to have to ask Lori what it was.

Of course, it's bedtime and I am a bit awake. But I am hoping to be sleepy soon.


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Posted by Karen at 10:25 PM No comments:
Sunday, June 3, 2012
Minimal Nerve Pain
I had very little nerve pain to deal with this weekend!

That was a huge relief.

I had a little bit when we were driving home from my Healing Touch appointment, so I stretched out across the back seat in Nick and Sharon's car, and it went away.

I felt great, otherwise, after my HT appointment.

Actually, I felt so good on Saturday that I decided to try again to go from 10mg pills to 5mg pills.

If you remember, I tried this two weeks ago. It didn't work out then, and it didn't work out this time either.

I got through the day okay, but then woke up in the middle of the night in incredible pain. Like I hit a wall of pain.

I went back to the 10mg pills. But today was awful because it was like I had to play catch up. Even though I was back at the right dose, I was in pain for most of the day.

I expect to wake up tomorrow in much better shape. And I will not mess with the pain meds again.

When I am in pain, all I want to do is lie still and not make it worse. I don't want to get up and move around at all.

Of course, getting up and moving around is exactly what I need to do to get better.

So messing with the painkillers is counter productive.


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Posted by Karen at 10:51 PM 4 comments:
Friday, June 1, 2012
No More Giant Feet
Today I woke up with normal-sized feet and ankles!

The excessive swelling, probably from all the IV fluids, is gone. I have been taking a big dose of diuretic, upon the advice of my fantastic primary care physician. It worked.

In addition, my weight dropped 17 pounds! Now that is a lot of fluid.

However, I am still a bit diabetic. The amount of long-lasting insulin that I need to inject is still decreasing (so far, from 26 units to 16 units), so I am hoping eventually to be completely not diabetic again.


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Posted by Karen at 1:20 PM No comments:
Too Much Exertion
At the time, my outing on Wednesday did not feel like too much exertion. But when we got home, I crashed and went to sleep. When I finally woke up, I was upright for about five minutes before the nerve pain started near my ankle. I kept walking around, hoping it would go away. It got stronger and more painful than ever, with every second that passed. In the end, I practically threw myself back in bed to escape the excruciating pain. Luckily, after awhile, that pain went away while I was lying down.

That is what all Wednesday evening and night was like. I could get up for about five minutes, but then I had to lie back down to stop the nerve pain from getting out of control. Sitting did not help. Only lying down helped.

I was just hoping that when I woke up Thursday morning, it would be finished, after a good night's sleep.

On Thursday, I was about to stay upright for quite awhile before the nerve pain started. That was an improvement. Plus, I realized that it took only about 5 minutes of lying down for the nerve pain to go away. That meant that I didn't have to lie there for 45 minutes -- I could lie there for 5 and then get back up again. So Thursday was a lot better than Wednesday.

I forgot to mention that Lou and I talked to the nurse practitioner on Wednesday about the nerve pain. She said that it could be a normal part of the healing process. The best thing that she said was that just because it is happening now, that doesn't mean it will keep happening. It might be temporary.

I sure hope it's temporary.

Can I learn from my mistakes? Well, there was an outing planned for today (Friday). Our neighbors, Nick and Sharon, were driving me and Lou first to my Healing Touch appointment with Amelia Vogler at The Healing Space, and then to the Bonefish Grill for dinner.

I realized that this was exactly the kind of double outing that nearly killed me on Wednesday. So I cancelled the dinner part. It broke my heart, because we would have had a lot of laughs at dinner. Nick and Sharon were really nice my cancellation. They are still going to drive me to my HT appointment, but then take me right home afterward.
Posted by Karen at 8:50 AM 1 comment:
Wednesday, May 30, 2012
35 Stitches
Erin, a fantastic nurse practitioner, removed 35 stitches from my back!

Afterward, we took John to lunch at A Southern Season's restaurant, The Weathervane.

Lunch was excellent.

Lou and I lingered at the table while John made his first foray into A Southern Season. He is a convert.

When we got home, I went straight to bed, because I utterly exhausted. Naptime.

Oh, and I found out that I should have already started PT, so if I wake up in time, I will be calling Avante in Cary for an appt with Jaime.


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Posted by Karen at 1:29 PM 4 comments:
Remove the Stitches
John is driving us up to Chapel Hill this morning so that I can get my stitches removed.

I don't see Dr. Jaikumar for this. But I do make my appointment for an x-ray and follow-up with him. That's when he releases me to go back to work and to start chemo.

Yesterday I had another migraine! Tinalynne told me that oxy pain killers give her more migraines. Maybe that's what is going on for me. It's more motivation to get off the painkillers.

Yesterday, I had 2 doses. It used to be 4, then 3...


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Posted by Karen at 8:29 AM No comments:
Sunday, May 27, 2012
Big Party
Carl and Pat held their most excellent Memorial Day party today.

I got a ride up the street from Pat, and then settled into a great seat for some fun.

I got to talk to a lot of people. I was really excited to hear from Robert and Marissa, who just got home from their ambitious driving trip across Europe.

But then another migraine started.

Lou rushed hone to grab a Maxalt for me, but by 5pm I was ready to quit. John kindly drove me home, and I crashed in bed till 7:30.

I had to push Lou to go back to the party. He felt that he ought to, what, stay home and watch me sleep off the migraine?!

I was really happy when he agreed to go back.


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Posted by Karen at 11:46 PM 2 comments:
Live and Learn
On Thursday, I got carried away with my new regimen of walking laps. Three sets of ten-minutes, way too much.

When I went to bed that night, I had nerve pain reflected down at my ankle. I hadn't felt anything like that since before the surgery.

On Friday, it was worse. I had nerve pain running down the back of my leg to my knee, as well as at my ankle. The painkillers took it away for awhile, but it kept coming back.

Needless to say, I have walked no more laps. The only exercise I have gotten is mentally kicking myself.

(Strictly speaking, I have gotten exercise, walking around doing things and fetching things for myself instead of asking Lou to fetch them for me.)

Today was much better. The ankle nerve pain showed up only when the painkiller had long worn off.

So whatever I did to myself on Thursday seems to be wearing off. Thank God.

I know it's human nature to push too hard when you feel a little better, but I still feel like a dope.


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Posted by Karen at 12:04 AM 3 comments:
Friday, May 25, 2012
What Hospital Was I In?




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Posted by Karen at 12:26 AM 1 comment:
Thursday, May 24, 2012
Walk then Sleep
I slept late today. Sleep is great. Time for all the cells to rest and heal and knit themselves back together.

Eventually Lou did come into the bedroom and quietly ask if I wanted a salmon bagel for breakfast. Nothing like the mention of salmon to wake me up and get me moving.

After breakfast, I walked laps around the dining room table for a whopping ten minutes. Shortly afterward, and not completely unrelated, I took my first painkiller of the day and then fell asleep for a couple of hours.

This afternoon, I managed another ten-minute walk. Right now I'm in bed, hoping to either fall asleep or read Rex Stout's Nero Wolfe for awhile.

Linda is bringing us dinner tonight!

Usually Lou goes to poker every Thursday, but he said he's too wiped out. I think we might end up on the couch watching Robert Conrad in season 2 of The Wild West, thanks to Netflix.

I am hoping for a third ten-minute walk tonight before bedtime.


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Posted by Karen at 5:02 PM No comments:
Wednesday, May 23, 2012
Dad's on the Roof
I got to look over my Dad's shoulder at some old pictures on his PC.

So this is my Dad standing on the roof of our old house in Woodinville, Washington -- cleaning windows for us.

My Dad is a maniac!




Look at that sunny blue sky! When it isn't raining, the Pacific Northwest is a totally beautiful place.
Posted by Karen at 9:09 PM 2 comments:
Mom and Dad
I am a little choked up today, very sad that my Mom and Dad have headed home. But it was a good long visit.

So I can't really adequately express how much it meant to me to have them here to support Lou and me. They are fun, ever helpful, completely flex, and the best Mom and Dad in the world.

Just this morning, my Dad helped me come up with a strategy for increasing my stamina by walking for a specific length of time, multiple times per day, and keeping a chart to track progress. The first 6 minute walk wiped me out! But, hey, tonight I did 7 minutes.

Anyway, here are my sweet wonderful parents:







Posted by Karen at 8:21 PM 3 comments:
Getting My Posts via Email
If I have been sending my posts to you automatically via email, please watch for some kind of message from gmail asking if you want to get forwarded email from Cheer Karen On.

If you want to keep getting the blog, then respond affirmatively to the email.

If you are tired and need a break, then respond in the negative!


If you wanto be be added to the list, then send me email.

Thanks!
Karen
Posted by Karen at 7:57 PM 1 comment:
Migraines (plural)
Usually I get maybe six migraines per year.

I had one migraine in the hospital after surgery. I had a migraine start yesterday morning, right after breakfast. And I had another migraine start today, right after lunch.

Luckily, I noticed the early warning signs --- blank spots in my vision --- pretty quickly both yesterday and today. That means I was able to take the Maxalt early enough to completely derail the migraine.

Perhaps "completely derail" is a bit optimistic. But Maxalt really takes the stuffing out of it.

I had actually forgotten how lousy a migraine can be (and I admit that mine are mild compared to stories I've heard) till that one in the hospital where the pharmacy took 2 hours to get me the pill.

Because of this migraine, I was not able to ride along to the airport with Patsy, Omer, and our fabulous neighbor John.

Instead, we said our goodbyes at the end of the sidewalk on the front lawn.

I might not have mentioned that today was the day they were going home, because I didn't want to think about it. Boy, I relied on them. They were so much help, and made me laugh.


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Posted by Karen at 2:24 PM 2 comments:
Tuesday, May 22, 2012
Me and my cane


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Posted by Karen at 10:42 AM 6 comments:
Lap Dog


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Posted by Karen at 10:40 AM 3 comments:
Monday, May 21, 2012
Helpful As Always
My appointment with Dr Schroder was really helpful, as always.

Tomorrow I'll have an ultrasound to rule out any blood clot that might be causing the crazy swelling. That seems like a prudent course of action.

It took awhile to update Dr S with all the new developments and then decide what to do.

When the appointment was basically over, I asked Dr S, "Would you like like to see my incision?"

Lou exclaimed, "Of course not!"

But Dr S said that he certainly would.
I knew he would. Professional curiosity. Plus, he's my PCP and really ought to see it.

I just moved my clothes out of the way and leaned over the exam table so both Dr S and Lou could get a good look.

He was surprised at how long it was, and Lou got him to measure it. It's 12.5 inches. Wow.

He said that it is a very neat incision, and that it is healing very nicely. Good to know. It has been Patsy's job to inspect it at home.


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Posted by Karen at 6:01 PM 2 comments:
Sunday, May 20, 2012
Giant Feet
So tomorrow afternoon, me and my giant swollen feet will go visit Dr Schroder, my most excellent primary care physician.

After 28 hours on a diuretic, plus a bunch of hours with my feet ridiculously elevated, only a very small improvement was seen in the swelling.

It's time to show my dogs to my doc and ask for help.

Otherwise, everything is going really really well.


I just loaned my copy of the Peculiar Children teen novel to my friend Carol, who came to dinner tonight to meet my parents.

Carol brought an amazing cherry pineapple cake dessert (spelled it right this time). She very sweetly brought enough so that we could have it again tomorrow. I am just hoping that nobody sneaks out and scarfs it all up in the middle of the night.


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Posted by Karen at 10:14 PM 2 comments:
Back-to-Work Date
I forgot to mention that I got voicemail informing me that my short-term disability ends on June 24.

So I will be back to work on Monday, June 25!

It feels good knowing when I'll be working again. I won't start thinking about work yet. Getting better really takes everything I've got.

Ugh, and I caught myself twisting again. That is the third time. (The first time was before I knew I wasn't supposed to twist.) Man, it is hard to remember. Let's hope the third time is the charm.


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Posted by Karen at 3:45 AM 4 comments:
Saturday, May 19, 2012
Still Diabetic

It's still too early to tell what will happen down the road with my temporary diabetes...

But today for sure I am still diabetic.

My blood sugar numbers are really very good. That's only because I'm still injecting myself with 22 units of long-lasting insulin every night! And I eat 3 (or fewer) carbohydrates per meal.

At bedtime, I'm using a Lantus "pen" to inject myself with the long-lasting insulin. The pen is easy to deal with. Surprisingly, it doesn't hurt.


My feet and ankles have been swollen since I got home. Today I talked to the neurosciences surgery resident on-call, who assured me that there was nothing about my surgery that could result in swelling. That's great news. Tonight I was lying on couch with feet straight up in air, which helped shrink feet. Oh, and we watched the Happy Gilmore movie.


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Posted by Karen at 11:46 PM No comments:
I am Itchy Today
When a boo-boo is healing, and suddenly it's itchy itchy itchy, that's a sign of healing.

So I must be in the midst of some awesome healing right now.

The two spots where the drains exited my back, they itch.

All the welts and scratches on my thighs itch.

The line of sutures running straight up my spine itch.

It takes character not to scratch these itchy spots. We know I'm loaded with character.


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 Friday, May 18, 2012
Walkway
Last year, we installed a walkway across the front lawn.

This afternoon, I walked down the walkway with my fantastic cane. We chatted with neighbors, and then i headed back into the house to rest.

Did I mention going down and up the front porch steps?! It was a workout.


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Posted by Karen at 6:05 PM 2 comments:
Dip This in Chocolate
Gosh, I have been quiet since arriving home on Wednesday. I've only been home for 48 hours, but it seems longer. Parts of my hospital experience are a distant blur.

Pretty much all I have been doing is lurking on the blog, soaking up your encouraging comments, and adding replies.

Lou is upstairs working. Patsy and Omer have gone to the medical supply store to pick up my cane. I am in the office, reclined in the LazyGirl, with Veronica my pink laptop so I can type on a real keyboard, instead of my phone.

DOOR BELL! INTERRUPTION!

A delivery person just rang at the front door with something for me. Lou carried in, not a vase of flowers, but two boxes from Edible Arrangements! OH MY GOD! Everything we have ever recieved from this company has been excellent.

We busted open one box, which contained two each of chocolate-covered strawberries, bananas, and green apples. I think we both ate two items each, which leaves two items in one box -- plus a completely untouched other box. And I got chocolate all over my face, hands, neck, and laptop.

This amazing gift is from my Aunt Frankie and Uncle Glen. Dearest Frankie and Glen, thank you so much. You are so sweet. You really know how to spread the joy.

Just wait till Patsy and Omer get home. (Don't tell, but I did suggest that if we polished off both boxes, and cleaned up all the choco evidence, no one need ever know... but Lou's cooler head prevailed.)
Posted by Karen at 1:34 PM 5 comments:
Wednesday, May 16, 2012
Cuddled Up in My Own Bed
We have been home long enough for me to get across lawn, up stairs, and into the house...

I gorged myself on half a can of Progresso Chicken Lemon Orzo soup. I couldn't even deal with a cracker.

And now I can barely type, I am so sleepy. Nap time. So happy to be home.


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Posted by Karen at 2:53 PM 15 comments:
We Are Over the the Wall!!!
We made it out!

We are in the car, on 40. "Jane" says we'll be home in 36 minutes.

Woo hoo, modified happy dance with only fingers wiggling.


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Posted by Karen at 1:00 PM 2 comments:
Dressed for Success
I am all dressed in street clothes, perched on the edge of my chair, just waiting for the discharge papers to arrive.

So I am coming home!


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Posted by Karen at 11:43 AM 4 comments:
Different Pain
Last night, my good friend Carol visited me. We had such a fun time!

Carol asked me how the pain after surgery compares to the pain before surgery. You know, I was pretty much trapped at home for 3 weeks on pain meds.

-- The pain before was a dark, unpredictable reflected nerve pain.

-- The pain after is a fresh clean surgery pain.

So I like this new pain better and expect it to go away.

What an amazing question Carol asked.


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Posted by Karen at 9:34 AM 1 comment:
500+ Texts
I spent a lot of time lying quietly in the dark, having a long text conversations with Lou or Tinalynne and so on.

This was instead of an actual phone call, which would have bothered my roommate.

In the past, I have been slapped with a huge Verizon bill because I exceeded some limit or other.

The customer service rep always says, if you had caught this in time, you could have changed your plan and avoided those charges. Boy, that would make me madder. Please warn me.

Anyway now I have an app for that so I found out I was WAY OVER.

So now both Lou and I can keep texting to our heart's content.


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Posted by Karen at 8:05 AM No comments:
If All Goes Well
Straight from the horse's mouth at 5:30am, Dr Downs said "if all goes well" I will be going home this afternoon.

Yesterday Dr Downs removed the second drain and asked the on-call person to watch for leakage.

It leaked enough that the on-call person (surgeon?) decided to put in one little stitch. That was fast and almost painless.

Yesterday, Patsy and Omer brought me clothes to wear home.


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Posted by Karen at 6:18 AM 2 comments:
Parade of Roommates
I have been in this hospital room for eight days!

I was installed here some time after surgery last Wednesday --- and here it is, Wednesday again.

I am on my third roommate. It's a lucky room because people are getting better and going home.

I won't say anything directly about anyone. Everyone behaved admirably in the circumstances. No one wants to be here, be sick, and be just behind a curtain from some stranger.

But it has been educational. Plus, I am following a couple of LMS survivors.

So, I feel really lucky about some stuff that has not happened to me:

I'm not confused, brain damaged, or in restraints.

No organ was nicked in a cancer surgery, causing so much trouble that the cancer is in the back seat.

I don't have an infection.

No chemo has caused any permanent damage to my heart.

(If any of those things have happened to you, I hope I haven't hurt your feelings by mentioning them.)


ONCOLOGIST NEWS FLASH

Dr Reidel called home to find out how I am doing! What a great guy. Lou gave him all the details. I will see Dr R around mid-June.


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Posted by Karen at 5:27 AM No comments:
Should I Just Ignore You?

Early Tuesday morning, there was some intense negotiations via texting to determine if two friends would visit me in the UNC Neuroscience Hospital before lunch.

(I've deleted all the texts, so I'm working from my faulty memory.)

Anyway, I love Doane and Heather. I'd enjoy their visit. I'd be laughing. But Tuesday morning wasn't good, for reasons best left unsaid.

At one point, Doane asked, "Should I just ignore what you're saying and come anyways, because I know you want visitors?"

"Ha ha ha! NO! Don't ignore me."

But that was my best offer to be ignored ever.

Plus, I think I got a committment that they will come visit me at home ASAP. (Knock on wood. I think I am coming home on Wednesday.)


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Posted by Karen at 4:11 AM 1 comment:
Tuesday, May 15, 2012
Lots of Progress on Monday
Good things happened on Monday.

John (physical therapy) took me for a long walk using a walker. We peeked into the "gym" where I could see the practice stairs and other equipment.

Maybe on Tuesday I learn how to go up the steps. I must climb four or five stairs to get into my house, but other than that, no stairs because I hardly ever go upstairs to Lou's domain.

Jenny (occupational therapy) worked with me more on how to move around and put on socks. She went over the bending/lifting/twisting restrictions for the 6 weeks. The most I can lift is a gallon of milk. I can't imagine lifting a gallon of milk right now.

Lou starts chuckling every time he points out that he'll be in charge of the washer and dryer.

Dr Downs removed one of my hemovacs! They are 4 inch round pie plate drains that have been sucking goo out of my incision. I had two to juggle, and now just one. Nice.

The removal process didn't hurt at all. I expressed my nervousness by asking if we ought to move certain pink fabric personal belongings (robe, tote) further away in case blood spurted everywhere... But the doc assured me that it would be fine, and it was.

And I hung out with Patsy and Omer! Patsy and I had our lunches on trays together in my room, and my Dad took off for the cafeteria instead. Have I mentioned how great the food is here? Like eating in a restaurant, no kidding.

However, Monday was also migraine day. Early in the morning, like 5:15am, I saw blank spots and realized that I had a migraine.

Under normal circumstances, I would have taken Maxalt within the first five minutes and completely derailed the entire migraine.

But it took over two hours for the Maxalt to arrive. Hospitals! So this ended up being a doozy of a migraine. It lasted all day, and I had all the symptoms.

Including where I cannot speak well because I cannot think of words. I warned my nurse that was normal for me during a migraine. Here on the neurosciences wing, they are always on the lookout for "brain attacks." I did not want to draw that kind of attention.

Patsy even had to text Carol and Christy at the last minute not to visit me, which broken my heart, because around 4:30, I was suddenly completely nauseated. Luckily, I got anti-barfing meds and went to sleep with P and O watching over me.

When P and O split, I had baked salmon dinner followed by a wonderful night's sleep.

I am lucky to have a stroke patient as my current roommate because the staff are making a huge effort to have zero nighttime interruptions for everyone in this room, so she can sleep uninterrupted. Super nice! Plus she and her family are very sweet.

What will today bring?


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Posted by Karen at 6:08 AM 7 comments:
Sunday, May 13, 2012
To Cheer or To Be Cheered

Am I blogging to cheer myself on --- and to give you all the opportunity to leave comments that really really really cheer me on in the fight because they show me that I am not alone and that others care?

Or am I blogging to cheer up my friends so they don't feel so bad for me? Tinalynne calls that caretaking. Heck no, that's not my goal.

Okay, so no need to post only happy easy stuff. I want to get the harder stuff out too so I can move past it.

In the moments before I can implement PACE (positive attitude changes everything), there are disappointments and worries that have to be aired, validated, and then let go of.

Like the fact that my surgeon estimates that he removed only 50% of the tumor. Half of that tumor is still in there. Expletive Deleted. Maybe it's sitting there chuckling like a monster in a dark corner of the basement.

Like the fact that the cancer got really aggressive in the last 2 months and ate a vertebrae. That is much worse than eating an entire box of Girl Scout cookies in one sitting, by yourself, in the dark.

Like the fact that I am diabetic and have to restrict my carb intake, so I can't even contemplate scarfing the last box of Girl Scout Thin Mints hidden in my bureau drawer at home?

Like the fact that the last two chemo drugs we tried did absolutely no good at all. What if the next one does nothing at all?

Like the fact that I have cuts and scrapes and scabs right ON MY FACE and neck for God's sake, because of the tape they used during surgery. That kills me, especially because I definitely informed them that I am allergic to tegaderm now and that it rips my skin off. Looks like I got into a bar fight.

Like the fact that I have to share my hospital room. My roommate could be a saint and it would still stink to share this space with them.

WHEW!!!

I think that's everything.

I feel sort of giddy. It's my naturally cheerful positive attitude yelling, "My turn! My turn!"


Thank you for reading all the way to the end.

Please please please post a comment, even if it's just "Hello Karen." It will arrive as an email and make me happy.



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Posted by Karen at 7:09 AM 49 comments:
Happy Mother's Day
Happy Mother's Day to my awesome mother, Patsy. I am so glad she's here to help.

And HMD felicitations to all my friends who are mothers.


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Posted by Karen at 6:16 AM No comments:
Saturday, May 12, 2012
I'm on a Locked Ward!
This is a locked ward!

You have to be buzzed in, and buzzed out.

My friend Susan just laughed her butt off that some body finally got me locked up.

This afternoon, my fantastic nurse, Mahogany, explained that there are head trauma and brain surgery cases here on this Neurological Hospital Wing.

Those patients can become confused. They might try to leave. Or they might pull out their feeding tube or IV.

Actually, this explanation was reassuring because I vividly remember hearing someone ask, in the wee quiet hours of the night, why room so-and-so was "in restraints."

(It's exciting to have the nurses station right outside my door.)

IN RESTRAINTS!!!

Yikes. Automatically, I started picturing myself in restraints. Not good. So I decided to think about something else.

And I am super polite to all hospital staff, hee hee.


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Posted by Karen at 7:23 PM 3 comments:
Slashed that Decadron Dose
Yesterday the decadron dose was 2mg, and I slept great last night.

This morning the decadron dose was 1mg, and I slept great all afternoon.

Sleeping is really important for healing.

I am still hopeful that PT shows up to take me for a walk as promised. But I am starting to pep talk myself so I am not completely devastated if it doesn't happen.


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Posted by Karen at 5:07 PM 2 comments:
Vast Improvement
Good news. Although my unspeakable milestone has not occurred yet, I am all drugged up and no longer in any pain and discomfort, neither physically nor emotionally.

Better living thru chemicals.

This morning when the team checked my incision and changed my dressing, I asked if I could try lying on my side instead of just staying flat on my back.

They said I could be in any position that feels good.

So for awhile, I have been lying on my side reading the Peculiar Children novel, and loving it. It's getting scary and a big violent confrontation is coming...

Lou, Patsy, and Omer are on their way here right now. Yippee.

I was thinking if anyone local really feels a strong need to visit then tonight or tomorrow would work. I wouldn't bother visiting me, hee hee, and will not be disappointed if no one comes. Text me for room number etc


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Posted by Karen at 11:24 AM 1 comment:
Healing Touch Appointment

Amelia Vogler is my Healing Touch Certified Practitioner, and she came here this morning to work on me.

Like pizza delivery for "energy work"!

Lots of nurses to Healing Touch as part of their continuing education so it's not unheard of.

As usual, I felt good afterward. She said my energy field is really strong.

I asked if she could focus on my bowel, and she did a procedure for that. Usually I fall asleep and don't watch, but today I got to watch her hands dancing around over my abdominal area. It was pretty.

There was a bit of drama this morning right before Amelia arrived. I sat up and saw that the absorbant pad under me was soaked with watery bloody goo! Yikes!

The nurse came right quick.

I was like, "Did I tear out a drain?!" They said no and I decided I better just calm down.

One of the connectors on one of the drains had loosened up and leaked. Whew. Trivial.


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Posted by Karen at 9:03 AM 1 comment:
Not feeling great
Haven't had any pain killers since 4 yesterday and didn't realize pain had snuck up on me. So just took something.

But the real problem now is I haven't had a bowel movement yet.

My stomach started to hurt at 4am.

Just now a resident on my team woke me up and asked things like what year is it, then I reported the stomach pain.

They are going to prescribe something stronger to make the BM happen. Wish I could time travel back to last night and get it then.

Amelia comes at 7am


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Posted by Karen at 5:59 AM No comments:
Friday, May 11, 2012
I See an Antelope




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Posted by Karen at 9:00 PM 5 comments:
TGIF
What a good day.

I finally slept after breakfast, with ear plugs.

Woke up to talk to Dr Jaikumar for a couple minutes. He said the surgery was a success. You betcha. I was happy for the chance to thank him. As he was leaving I told him he is a rock star. (That's the drugs talking.)

Then Jane from Physical Therapy (PT) showed up at 11:30. I got up the way I have been doing it.

At first, she was trying to lift me up. She usually gets a patient up for the first time, and that requires a lot of lifting and coaching. Hey I had two people lifting and trying to calm me down that first time.

My major restriction: no twisting. (I had to admit I twisted once, but promised not to again for next six weeks.)

I went for a walk! I wanted to peek out my door. Very pretty out there, with the nurses station and fancy glass-enclosed family room that I am calling the fish bowl.

I was just walking upright with no support besides Jane's arm. I got ambitious and wanted to cross the hallway.

That totally exhausted me. A nurse had to fetch the walker, which was a huge relief.

Took a long time to get back to bed. I was trembling. But proud. Jane said it was fifty feet.

There is very limited PT on Saturdays, but I got an appnt which is excellent.

Patsy and Omer had arrived in time to see me walk. Jane told them I did great.

My parents pampered me all day till leaving just before 8pm.

Body parts that hurt got massaged! Talk about long lasting relief.

I even slept for awhile. Patsy sat in the recliner next to my bed and read. Omer went to the fish bowl and read.
So I am all comfy cozy ready to sleep but sort of wide awake. The decadron has been slashed by half, so I do hope for sleep.

My quality of life here has been significantly improved by ear plugs. My new roommates are watching TV but I can't hear it. And there is always something going on at the nurses station.

Um, not that anyone would, but please no flowers. This shared room is completely insanely tiny. There is no space for anything beyond essentials.

Oh the bathroom is huge and roomy tho. Vastly better than Duke.


Sent from my Verizon Wireless Phone


Posted by Karen at 8:41 PM No comments:
Quick Taper Off Decadron
Dr Downs just dropped in for a quick chat and strength test. Later the team will come look at my backside again.

He let me know we are going to start today a quick taper off the decadron steroid!

Choirs of angels are singing right now!

Such good news. I will be able to sleep and shut up --- and my blood sugar ought to get back to normal.

But, it helped for pain, so ha ha ha maybe more pain is coming. Well bring it on.


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Posted by Karen at 6:01 AM No comments:
Flush with Success
From 1:53am till 2:48am, that's how long it took from making the decision to pee, squirming out of bed, getting walked to bathroom, accomplishing task, washing hands, walking back to bed, and then squirming all the way back into my original position.

Maybe this is TMI.

Heck, the whole blog is TMI.

The biggest deal is the squirming back into bed.

I start at the foot of the bed and have to get my head like 5 inches from the headboard, or else I am slumped when I sit up.

After shift change earlier tonight, on another pee break, my fabulous nurse tech was offering advice on a better way to start off, so the journey is shorter.

I thanked her but explained that the long journey, unsupervised, is like aerobics and yoga and mountain climbing and meditation. I know I am moving better because of it. I am more flex and LESS SCARED to wiggle.

She was like, "most people want to minimize the exertion required," and she was happy for me.

But she was more happy for herself, because she and the nurse thought they had to help and were planning to drag me into position. Dear God no.


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Posted by Karen at 3:10 AM 2 comments:
Thursday, May 10, 2012
Pain is Coming
Doctors have been visiting me all day since really early this morning.

I love UNC.

I am so glad we chose Dr Jaikumar. One of the nurses said we were lucky lucky to get him. We have Dr David Morris to thank for that.

Anyway, I was warned this morning that I feel so great because long-lasting anesthesia painkiller has not worn off yet.

It will wear off soon. Then it's just me and oxycodone, but oxycodone is nothing to sneeze at.

In addition, someone eventually shows up to get me to stand up, and that'll be a challenge with pain (he said).

So, I was texting with my good friend Lisa in AZ and she said something brilliant. (First part is familiar; second part is the kicker.)

Live in the moment while there's no pain. When the pain comes, think about the future!

I LOVE IT.

Thanks, Lisa.

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Posted by Karen at 11:14 AM 8 comments:
X-Rays Last Night

Maybe around 10pm I went for an X-ray. A team of ladies slid me onto stretcher bc no getting up yet.

There are three drains to be careful not to pull on. So tricky. Let's just say it was the drugs that made me attempt to micro manage the process.

I get to X-ray and meet the fun night team. Perfect mix of professionalism and warm welcome and mischief.

But then they tell me I have to SIT UPRIGHT for it. I was shocked.

I sputter, "Are you sure this is okay?!"

"Doctor's orders," they respond calmly.

"But I just had surgery."

"How long ago?" they ask.

"Ten minutes," comes out automatically. They all laugh.

(Thank God my nurse did not warn me when I left my room, I probably would have been completely freaked by the time I rolled into X-ray.)

So they agree to lift the back of the stretcher a bit at a time.

Ready? First heave fine.

Ready? Second heave fine to about 1/2 position.

Without warning they jump to about the 3/4 position and I yelp STOP STOP STOP and maybe a mild swear word, and they hold me there to regroup.

One more heave totally upright and PAIN and I drop the F-Bomb.

They all laugh.

The lady on the team gives me the honor of best patient of the night.

Actually, once I am upright, no pain at all.


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Posted by Karen at 7:18 AM 6 comments:
Feels Just Like Home
This hospital room strangely feels just like home.

It's my first double room. There is a very sweet husband and wife in their like 50s behind the curtains, and it's just like cubicles at my old company, Intemec, impossible not to listen.

(They have requested a private room but are apparently waitlisted.)

The reason it's just like my bedroom at home is that they together breath and snuffle EXACTLY like Lou!

It is not snoring, it's just breathing. Amused me when it stated. Gave me the giggles. Now its comforting.

The bed is awesome like my bed.

I am on my back, and I am drugged so comfy.

Now, the differences.

Over and over, some supportive family member steps out of their own room so as not to disturb their loved one, and conducts casual loud long mobile phone calls in the open space outside my door!!!

Ooh if I weren't so forgetful bc drugged I would have stranger-danger personal intrigue to share avec vous based on those calls.

I have not gotten up yet. They said I could but I am waiting till morning. I am moving my legs and feets and arms etc. Like a chair dance.

My shoulders are sore from being in one position for whole surgery.

Chocolate cake for dinner bc mistakenly put on regular food. Sugar 304 before bed so diet immediately changed.

Folks at home, I have a new list of stuff for you to bring! Although that statement is suspiciously close to diabetic statement, I swear not to be asking for candy.

Number one difference: I am making myself sleep or snooze or rest even tho still on decadron bc I need sleep to heal.

(Only awake now to post bc roommate gets Lots of Nurse Visits in night and beeping equip but God Bless Her)


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Posted by Karen at 2:19 AM 1 comment:
Wednesday, May 9, 2012
Is That a Camo Bandage?


Um at first I thought this was some kind of crazy Army Navy Marine camo bandage on my paw.

But as the drugs are clearing I realized its a blood soaked bandage. Nice.

Wonder if an IV blew.

Was Miss Bailey in the operation room?! Bob musta falled down on the job distracted by Frodo.

Karen herself

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Posted by Karen at 9:31 PM 3 comments:
7pm update
Karen is now in her room. She is awake, telling jokes, and bossy. No tubes in her throat. Feels well. Face puffy as expected.
Posted by Karen at 6:58 PM 10 comments:
4 PMT update
Surgery is 95 percent complete. Surgery went very well. About 40 to 50 percent of tumor removed. Surgeon was not able to install cage not enough room. However sufficient strong bones remains. Screws inserted at l 2 l 3 and l 4 as well as lower back.
About another hour and a half to close up and finish the surgery. Karen will not have to go to ICU. Instead she will go to recovery and then her own room.

Posted by Karen at 4:22 PM 2 comments:
2:30 pm update
So far everything is good. Process of removing tumor is slow and steady. Another 2 or 3 hours to go.
Posted by Karen at 2:43 PM 3 comments:
Noon update
All is well. Proceeding as expected. A CT scan was donr during operation. Proceeding to remove tumor.
More info as it becomes available.

Posted by Karen at 12:12 PM 4 comments:
Status
Karen was wheeled off to surgery as scheduled at 8:30 am. Her spirits are quite good.
More info later.

Posted by Karen at 9:24 AM No comments:
Tuesday, May 8, 2012
Sushi Dinner Tonight
Of course we went out to sushi tonight! We went to Genki, which we love. It was packed! Crazy for a Tuesday. But it gave us a lot of time to talk and laugh while we waited for food.

Lou, Omer, and I ate fabulous sushi -- and Patsy had a noodle stir fry, which looked pretty yummy. As an added bonus, we ran into my good friend Michael from work, who was there with his girlfriend and son. I was so glad to be able to introduce him to my parents. (He has met Lou.)

The house is very quiet right now. Everyone else is in bed. I was very sleepy after dinner, but then I had to shower with a strong sanitizing soap, and the process WOKE ME UP pretty severely. I sure hope that I start to feel sleepy soon.

I feel rock steady and confident about tomorrow. It has been a long wait, and I am ready to get this surgery over with. My focus is on the strong chemo that will come maybe 6 weeks after the surgery. Got to beat back the cancer. Beat it with a big chemo stick. Make it whimper and cry. Kill it if we can. Maim it if we can't kill it.

It seems funny to say this, but today was a super day. I started off at the bank with Lou and got the happy news that all the stolen money has been restored.

I had to start taking painkillers when we got back from the bank, though, because I could hardly walk. As a result, I was feeling pretty darned good all day long as Patsy and Omer chauffered me around town like a princess, running little errands and buying stuff. We had a lot of laughs. I do not think that I shut up for 5 minutes the entire day. Decadron does not bother Mom and Dad.

Lou stayed home and worked in a nice quiet house, which was really good because he has some code to deliver by Friday. Life marches on.

There are lovely lovely flowers on the kitchen table, care of Lou's coworkers!

I am reading a great book, Miss Peregrine's Home for Peculiar Children, by Ransom Riggs. Turns out, Patsy read it too on her Nook, but she could not see the creepy pictures so well on the Nook. I might be halfway through, and I just hope that it does not take me too many days in the hospital before I can pick up this hardcover and resume reading. (Maybe Patsy will read aloud to me. Someone ought to suggest it to her.) This novel is on the New York Times Best Seller list, and it's for teens. I think that books for teens are often better-crafted than books for adults, because a teen will give up on a lame book and toss it across the room.

You don't have to worry about Miss Bailey being alone in the house tomorrow, because we asked Bob to keep her company all day. Bob's main job is to keep the monster from destroying anything, especially all the freshly cleaned area rugs. He's planning on a Lord of the Rings movie marathon. Do not feed her so much popcorn that she barfs!

Really, I had better go to bed now -- even though I am still so wide awake. The alarm will go off in 6 short hours. Luckily, my job tomorrow is pretty easy.

Posted by Karen at 10:18 PM 3 comments:
Ten Day Old Bruise



This is the bruise that developed after I sprained my ankle ten days ago. It looks awful, but it does not hurt at all now. That first day, I used a walker to get around. It was bad.

The amazing thing is that this bruise was a solid dark blue when I went to see Amelia Vogler on Monday afternoon for a Healing Touch appointment. My ankle was one of the things she worked on, and at the end of the hour, clear patches had appeared admidst the blue!

It was so dramatic an improvement, we both wished that we had taken before and after pictures. And since then, the bruise has just been clearing up nicely.

I really can't say enough about the work that Amelia has done on me. I am not clear what she does, but I always feel better afterward.


This afternoon, my parents drove me to a pedicure appointment so that I could get my feetsies cleaned up, and all the polish removed, for the surgery. The pre-op nurse warned me that I ought to get rid of the polish, because I guess they like to seee your nails as an indicator of maybe oxygenation?? Who knows.

Posted by Karen at 10:18 AM 3 comments:
Would You Want To Be Me Right Now?

If you could trade places with me right now, would you?

Ha, of course not.

But some criminal did a little identity theft on me today.

She fricking emptied our checking account (plus savings) to pay two of her ginormous credit card bills.

Lou saw the transactions right away and contacted our bank, and all the money will be returned to us in the morning. Thank God.

Our banker said the two credit card companies will go after the woman. Grrr! Get her!

The bummer is that I'll have to spend time tomorrow with Patsy and Om at the bank, closing those accounts and opening new ones.

My plan was for a little fun on this last day before surgery. I figured I would be up for it because I could take a painkiller and have my Dad do the driving.

What fun? I want to go to Bed Bath Beyond to buy a cute new rug for standing at the kitchen sink. What, that doesn't get your heart beating faster? It's pretty heady stuff after three weeks trapped in the house!

No matter what, we'll have fun tomorrow.

I better try to get to sleep now.


Sent from my Verizon Wireless Phone


Posted by Karen at 2:07 AM 5 comments:
They Are in the Car
Patsy just called. They are in the towncar, headed here to the house!

I was fast asleep, and now I am wide awake. I am so glad they are here. Or almost here.

The house is ablaze with lights. The dog thinks it's breakfast time.
Posted by Karen at 1:02 AM No comments:
Sunday, May 6, 2012
Happy Belated Anniversary, Jeff and Lynda
Lou is dubbing videos from VHS to DVD for Patsy and Omer.

So last night, I got to see Jeff and Lynda's wedding! On May 2, 1992! Happy Belated Twentieth Anniversary, you two!

Twenty years is a huge accomplishment. Gosh, you were both so young and gorgeous and happy. Lots of kissing at this wedding!

One thing I did not understand was "Puff The Magic Dragon" being played during dinner for Lynda by her coworkers. It was hysterical, but I would love to hear the story behind it.

It was super cool to see everyone, especially Patsy and Omer all dolled up, dancing and laughing.

Ned Charpentier cut an awesome and impressive figure doing the twist. I can't remember everyone, but it was fun to see the Tom and Gloria Brittain, and Jimmy and Pat Souza in the receiving line.

I also got to see some people who are no longer with us, which was bittersweet.

Of course, I was keeping an eye out for myself. Finally, I saw Tinalynne and I doing the Electric Slide on the crowded dance floor. We had some good moves. (I still have those earrings.)

For some reason, Lou was not my guest at this event, despite the fact that we got married like 3 months later. Last night, he really teased me about not being my date, hee hee. Way back then, there was at least one aunt who made it clear to me that she thought maybe Tinalynne was going to be my life partner, and she just wanted me to know that was really okay with her.

Maybe that misconception was inevitable, since I like never dated anyone and brought only Tinalynne to every single family event. And Patsy was always making some special dish for Tinalynne, like chicken instead of ham, just like a good mom would do to help woo a prospective bridegroom. Of course, I eventually brought around Lou, and Tinalynne eventually brought around Michael, and then we married them!

I will admit (since it is just us talking here) that I always had an expectation that some day in the far far far future, Tinalynne and I would be rickety old widows living together somewhere. With cats.
Posted by Karen at 5:03 AM 5 comments:
Lou Conquered the Conquistador!
Saturday was a funny day. Really enjoyable.

We started the day at our local Brigs restaurant. The door was still locked when we arrived at exactly 7:00AM, opening time. Our goal was for Lou to eat the last of six Royal Skillet breakfasts so that he could get a free t-shirt that says, "I Conquered The Conquistador." Hey, such goals and distractions are good for the mind -- if not for the arteries.

After breakfast, since I was still in good shape, we actually grocery shopped. Since I have been side-lined, we have been ordering groceries online and picking them up at our Harris Teeter. It's a good system, but it is not the same as wandering through the store. I had three things to pick up for Patsy and Omer. I could not find Smuckers Sugar-Free Maple Syrup. Grrrr. Got the other two items though.

The rest of the day, it's almost like we vacationed from each other!

Lou and Bailey took a really long walk, and then Lou watched hours and hours of Frontline on the world-wide financial disaster caused by those credit risk swap, mortgage backed security thingies.

Meanwhile, I was either lying on the floor of my office (to avoid taking pain killers) or working in my closet to arrange things just so. I was also ruthlessly throwing away anything that needed to be thrown away.

Our plan had been a big salad for lunch, but we decided on a whim to go out for Mexican food for Cinqo de Mayo. It was great. We both got fajitas and brought home enough leftovers for an army.

Saturday was not a great day for pain. I ended up taking a painkiller at bedtime, which meant that I slept great. But I did sleep short, only from like 11:00PM to 3:30AM. I have surrendered to the weirdness of my decadron-fueled sleep pattern and look forward to a Sunday afternoon nap.

Posted by Karen at 4:58 AM No comments:
Saturday, May 5, 2012
That Was A Test

We just made sure that Lou can use his cell phone to update this blog and let ya'll know how it's going during the surgery.

Giving him access like this is a bit more nerve wracking than when I signed over power of attorney.

God knows what he'll post.

Sent from my Verizon Wireless Phone


Posted by Karen at 4:58 PM 1 comment:
Lou taking over
Lou is now in charge.
Sent from my Verizon Wireless Phone

Posted by Karen at 4:52 PM No comments:
Friday, May 4, 2012
11 Words With Friends
I currently have eleven WWF games going.

I lost a lotta games in the last week though. Can we blame the painkillers, please?



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Posted by Karen at 7:08 AM 2 comments:
Vote Early, Vote Often
We didn't early vote on Thursday, so we'll do it today (Friday).

We always spend a lot of time picking the judges. I laugh to myself about hoping to never go in front of one.

I was sleeping so peacefully on painkillers but now I am awake.

Not on painkillers, I have one boring position in bed that's pain free, on my right side, no pillow under my head, blah. (But I thank God I found it.)

On painkillers, I can sleep however I want. I woke up on my stomach, smashed up against Lou, hugging my pillow... Nice.

Maybe I shouldn't submit sleepy bizarre painkiller posts like this.

Our sheets are chocolate brown with a stripe in the weave. Had to get new sheets for the new mattress. That is always fun.

Our quilt is blue and exactly matches Tinalynne's blue quilt. By accident they match. A million years ago, I admired hers, she said JCPenney, and somehow I got the exact same one.

I better just shut up now.

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Posted by Karen at 2:58 AM No comments:
Thursday, May 3, 2012
Early Voting
I am good for one errand or event per day, and today it will be early voting in the North Carolina primary. We have our sample ballots all filled out, all the decisions have been made, so now we just go and vote somewhere in Garner. (I printed the directions.)

We used to use absentee ballots when we lived in Washington State, but early voting is sort of fun. It's fun to go to the polling place, make the effort, be part of the event, all at a time of our choosing.

But, early voting doesn't start till 11:00am today. Why am I up? Decadron I think. I have been WIDE AWAKE for a little while, so I finally gave up and popped out of bed.

Bad news: there is nothing to iron. The closet here in my office is completely empty. All our clothes are hanging in the master closet (or crumpled dirty in a hamper, and I draw the line at ironing dirty things).

Oooh, but I have not touched up the ruffles on the sheets for the guest bad for Patsy and Omer!! Ah, decadron also makes the little grey cells fire. (I recently watched a couple of Poirot episodes on Netflix.)

Things are going okay. I am looking forward to the surgery on Wednesday. I wish it were sooner, but then again I don't relish how I'll feel the night before.

My ankle developed a heck of a bruise. It is still swollen, but I can walk just fine.


TACO SOUP ALERT

Friends have offered to bring us meals, which is so sweet and exciting and convenient -- but we basically asked that they hold off till after my parents have come and gone, because that is when we assume we'll need support.

But my great friend from work, Meredyth, dropped by Wednesday night with buckets of something called taco soup and something else called cornbread.

Our Thursday night dinner was comprised of these items, and it was an event. Fabulous! Delicious! And there is another whole bucket o' soup in the freezer! Meredyth, thanks so much.

We are going to need recipes. My marriage might not survive the vicious fighting over the cornbread.
Posted by Karen at 4:28 AM 1 comment:
Tuesday, May 1, 2012
Next Week: Patsy and Omer
One week from today I'll be waking up to Patsy and Omer sitting at the breakfast table!

They'll probably all be drinking their coffee by the time I roll outa bed, unless the decadron has me up before the birdies.

Today a guy comes to take away all the area rugs for cleaning. Exciting.

Last night I stayed up till 1:30am.

I sewed a few sequins along the hem of a skirt... It looks cute but took forever. I hope I can get a little faster. But this is my distracting project for the week.


Sent from my Verizon Wireless Phone


Posted by Karen at 8:43 AM 1 comment:
Monday, April 30, 2012
More Ironing
I am taking my night time dose of decadron with dinner now, in the hope that I can sleep.

It's not working yet.

I am up, ironing. The closet, she is almost empty of clothes being held hostage in a deplorable wrinkled condition.

Surprisingly, Lou is a little overwhelmed with all his wardrobe choices and is finding it more difficult to put together a cute outfit in the morning.

Yeah, that was a complete lie.

He basically just picks whatever is next in line. He's going to kill me now. Hee hee. Make fun of my accent, see what happens.

Oh, and we are making sure he knows how to post to this blog so he can update y'all on surgery day.

Sent from my Verizon Wireless Phone


Posted by Karen at 11:46 PM 1 comment:
Should I Keep to a Schedule?
At about 3AM, legs cramps woke me up. Luckily the sprained ankle is just a bit swollen and bruised, so I can walk around fine now, so I walked out the cramps. Lou helped by fetching me Gatorade.

I tried to go back to sleep. Lou accomplished that task, I am happy to report. I played Words With Friends and read some CNN articles off my cell. But around 4AM, there were foot cramps, and I gave up hanging in bed waiting for sleep.

So I wandered up to the guest room and looked through some more summer clothes and then picked an old Agatha Christie to re-read. I am hanging in my office, reading.

The question is, is this okay? If I am up at 4AM, how's that gonna impact my day? And my sleep tonight?

But now that I am out on disability... maybe I should just embrace whatever wacko sleep patterns get imposed by the decadron.

With any luck, the decadron goes away after the surgery. With the decadron gone, I ought to be able to sleep an 8 hour night.

In one hour, Lou's coffee machine will roar like a jet engine, grinding beans for his morning brew. That's his alarm clock.
Posted by Karen at 5:05 AM 2 comments:
Sunday, April 29, 2012
Walker Time
This morning I was in my closet, pulling out long sleeves to make room for short, and my left ankle collapsed.

I fell into a shelf, thank God.

I also screamed at the top of my lungs for like 10 seconds. In the quiet aftermath, I expected neighbors banging on the door, but none came. Good to know.

Anyway, I hobbled to a chair.

It's just a sprain. Since basketball days, my ankles have taken a beating.

Luckily, good friends right at the top of the hill delivered me a walker, which has been a huge help today.


Sent from my Verizon Wireless Phone


Posted by Karen at 6:35 PM 2 comments:
Wide Awake
I am up.

I did a little ironing, and now I'm just watching TV.

No pain, which is awesome. It must be the decadron hyping me up.

Sent from my Verizon Wireless Phone


Posted by Karen at 1:30 AM 2 comments:
Saturday, April 28, 2012
My Typical Day
It's so weird being out on short term disability and waiting for surgery.

Here is my typical day. I wake up around 6:30 in pain.

I've try to take the morning dose of decadron plus a narcotic painkiller and go back to sleep, but I guess I have finally been on the decadron long enuff for it to be making me Wide Awake and Too Talkative...

Thus, I am up. Breakfast with Lou and morning news. I also make a move in up to like 10 Words With Friends games that I have going.

Since I took a painkiller, no driving for 4 hours.

Lou and I try to figure out what one thing we are going to accomplish together that day once the four hours is up and I have a window for driving.

I am basically good for one errand, after the painkiller wears off. I can do one thing, then come home, take a painkiller, and sleep.

Today, the one thing was lunch at Larry's Southern Kitchen (yum) on Tryon Road in Garner followed by buying a fresh can of tennis balls at Target for Bailey.

I was doing fine till we had to walk thru the entire Target to get to sporting goods.

Had to stop three times and pretend to study products on the lowest shelf, so I had an excuse to bend all the way forward to stretch my spine.

The pain shooting down my right leg was almost unbearable, but went away temporarily with each bend.

If they hadn't assured me I won't fall down paralyzed just yet, I might have been worried.

As usual, I slept all afternoon. And then evening and TV and bedtime...

I was pretty much refusing to take any pain meds all day, bc I am afraid of them, but what was happening was that the pain got crazy out of control, and it would take one dose, four more hours in pain, and then a second dose would finally kick in after an hour or two.

And during that whole time I would be unable to walk or sit, and it would tear Lou up.

So I have agreed to manage the pain better while we wait for the surgery.

Sent from my Verizon Wireless Phone


Posted by Karen at 11:26 PM No comments:
Friday, April 27, 2012
Plan B Surgery
Plan "B" is the "better" plan. It took me a day or so to come around to that.

Plan A was the Cadillac approach: 2 surgeries, 5 days apart, removing 95% of the tumor, inserting a big cage and a rod, and then requiring me to spend maybe 2 weeks in the hospital plus maybe 4 weeks in a rehab before even being allowed to come home.

But the vascular surgeon sort of put the kibosh on Plan A.

What with having two abdominal surgeries already (they should have installed a zipper), plus radiation, plus a mesh screen to repair an incisional hernia -- well that presents quite a tricky minefield of possible combinations. Dr Ford estimated that there was a 20% chance of him doing some catastrophic damage to my abdomen just trying to clear the path to the vertebrate. My quality of life could be completely wrecked, and what we are trying to preserve here is my quality of life.

Now, if Plan A had a chance to be curative, then 20% might be something we could live with, might be worth he risk. But it won't be curative.

So we are falling back on Plan B.

This will be one surgery, all done from the back. It will actually be a lot more technically challenging for Dr Jaikumar. Might take him 8 hours. He expects to remove about 85% of the tumor. He'll be leaving a lot of bone in place, so there might not be a cage. If a cage or other structure is needed (in addition to the rod) then he has a couple of options for whatever will fit in from the back.

Coming in from the back, he'll be right in there with all the nerve roots and stuff, but they will be sending electrical signals through to monitor that nothing is being stretched too far during the entire surgery. That is kind of cool.

I'll recover much faster from Plan B, which means I will be able to start a new chemo way faster after Plan B than after Plan A. And I need to get back on some chemo quick. Got to beat back the cancer, especially since it's starting to act all aggressive and annoying.

Dr Jaikumar also reminded me that his goal is not to scoop out all the cancer. His goal is to fix the compression problem and reinforce my spine so L5 does not abruptly collapse and leave me paralyzed. Since both Plan A and Plan B would do that just fine, why wouldn't we choose the one that will be much easier and faster?

The new date for the surgery is May 9. We needed a day when Dr Jaikumar could work on my all day long... gosh it's going to be a long ordeal for poor Lou, Patsy, and Omer in the waiting room.

I have already talked to Dr R about the next chemo.

I have also started all the paperwork for the short term disability. It is pretty upsettig not to be working. Plus I think I am driving Lou nuts by being home. He is trying to work and trying to keep an eye on me all at the same time.

Posted by Karen at 11:08 AM 5 comments:
Tuesday, April 24, 2012
One Tid Bit
I have one tidbit to share, but it isn't a savoury little morsel.

Today I was wondering how the heck a slow-growing LMS got so huge in L5 all of a sudden, so I logged onto the Duke Health Portal and started reading back through my recent CT Scan Reports. (It is pretty cool that I have access to all my reports online.)

Anyway, I knew that the tumor was first mentioned in an MRI report from October 2010 as a tiny spot. There was no need to go back that far in the history to start looking, so instead I focused on the two reports from this year.

In the February 2012
 report, there was no mention of L5. In the January 2012
 report, there is a note that L5 is "stable." Hmmm. I was about to scroll back to like November 2011 when Dr Reidel called.

(What perfect timing. He is just awesome. I really feel lucky that he is my oncologist.)

Anyway, he had been doing the same exact thing. But he talked directly to the radiologist who prepared the reports and who clarified that although the tumor at L5 was not mentioned in the February report, it was there, and it was "stable."

So, it was stable and tiny in January and February -- and it fricking blew up to eat my L5 by April?! How could that be?

"I thought leiomysarcoma was slow growing," I protested.

Not true, he said. If a tumor is "high grade" then it can be very aggressive. And (finally we get to the unpalatable tidbit) the tumor that they found after my hysterectomy was high grade.

Then it all came back to me. I remembered my first oncologist running through a list of perhaps 5 different measures of seriousness, drawing me a diagram, and explaining that the tumor they found scored pretty badly on every single measure. Definitely high grade. I guess I knew that but had forgotten it or suppressed it.

Grrrrrr. But I guess I ought to be pleased that the tumors have all been lazy till recently.

Okay, painkillers have kicked in, and I am ready to go to sleep.
 

 Monday, April 23, 2012
Be Careful What You Ask For
For years, I have been asking for a little surgery instead of chemo, chemo, and more chemo.

Now, I am getting surgery. Big surgery. Double surgery.

Today we saw the tumor at L5. It has basically eaten away all my precious little L5 vertebrate. They are going to have to scoop out the mess, put in a cage to replace L5, fill the cage with bits of bone from a cadaver, and then come in 5 days later in a second surgery to put in a metal rod screwed to L2, L3, L4, and the sacr-something down at the bottom so that everything is nice and secure for my long happy future.

Surgery is next Friday, May 4.

It's actually not a bad double surgery, not terribly technically challenging, which is nice.

But the tumor is insane. Radiation is sort of off the table because it would take a huge dose, and I already got quite a big dose 3 years ago.

Dr Jaikumar was pretty clear that we can't just leave it alone and hope for the best. Why wait till I fall down paralyzed in 3 months before having the surgery? Better to have it now while I am still in okay shape.

I am so exhausted. I would be asleep, but my right leg is killing me. But I have to go to sleep so I can get up early and go back to UNC to meet my vascular surgeon, Dr Ford. Oh, and have a CT Scan to guage the density of the bones where the screws will go in. Another fun day.

Plus, this evening I sent off mail to work letting them know that the worst case scenario is me out of work for more than 6 weeks. Good thing I work at the best company on the planet.


+ + + + +

Somebody remind me to ask whether they can test removed tumor bits to make sure that it is leiomyosarcoma. It's just grown so quickly; LMS is more slow growing, or so I thought. Maybe it's something else. Maybe if they can identify it as something else, they will say "Oh, XYZ chemo will kill off any little redisidual cells that escaped!" On that happy note, I will go to bed now.

Posted by Karen at 11:25 PM 6 comments:
Being Mocked Bad
Lou and Brent are driving me to UNC, and they are mocking my accent pretty bad.

It started when I asked Lou to give me my cell phone, which was in the front seat connected to the chah-jah.

(charger)

I gave myself a pep talk this morning to listen with an open mind and just try to trust that the experts will know what to do with me.

I would really really like to keep being about to walk!

Sent from my Verizon Wireless Phone


Posted by Karen at 11:32 AM No comments:
Sunday, April 22, 2012
Sugar Free Me
Have I mentioned the diabetes much? Probably not.

The clinical trial made me diabetic. The consent paperwork warned that that might happen. It's an okay side effect, as long as it's temporary! Sure helps to keep me on a food plan, counting carbs and seeing the black-and-white results in blood sugar readings.

While I was in the hospital, my blood sugars went crazy. One mid-morning reading was 450. I think 120 might be a normal post-breakfast reading. The nurse looked at me askance because we had just come back from Starbucks. But no frappuchino for me!

The crazy high numbers were being caused by the steroids that the docs were using to reduce the inflammation and pain. I like not being in pain. Who doesn't, right? I am currently getting about half the dose of steroids at home, with about half the reduction in pain that I enjoyed in the hospital.

In the hospital, the nurses gave me fast-acting insulin injections after meals, plus one slow-acting injection at bedtime. Now that I am home, I am taking a pill in the morning -- and giving myself a whopping big slow-acting insulin injection every night. It's called Lantus.

I am not a complete newbie to injections, I guess. Years ago, I gave my cat Spike insulin jections with no trouble. When Lou had surgery, I gave him blood thinner injections without blinking an eye. During Gem/Tax chemo, I gave myself Neulasta shots, which stung and left bruises on my thighs and required a lot of psyching up beforehand.

The first night at home, when I gave myself the Lantus shot, it was unpleasant and left me feeling kind of shakey emotionally, like this was too much to ask. But then the next night, it was fine. It wasn't a joy, nothing to look forward to, but fine. I can do it.

Well... Lou is upstairs working. Because it's raining, he has Bailey locked up with him in the office, to restrict her from running in an out all day tracking mud into the house. I am (shhh don't tell) ironing again. In a couple of hours, my friend Carol will drive me to UNC for that MRI.

Posted by Karen at 11:26 AM 2 comments:
Saturday, April 21, 2012
Midnight Ironing
When they discharged me from the hospital, the nurse said NO LAUNDRY. But she doesn't know me...

Last night, I had a really hard time sleeping. I was fully medicated, and yet there was just enough pain to keep me from doing anything except dozing off fitfully.

So around 12:30, I got up and took one more painkiller (as prescribed). While waiting for it to kick in, I watched Doc Martin and ironed a lot of shirts of Lou's that I have been holding hostage here in my office. Very satisfying.

At 2:00, I finallly felt pain-free and sleepy, so I went to bed. I got in an excellent 6.5 hours of sleep. And then I woke up feeling surprisingly cheerful.

(Yesterday evening, on the couch, Lou and I had a bit of a tearful summary of the week behind and the week ahead. You can't hear things like "paralysis" and "incontinence" from various doctors without getting bummed and fearful. But it was a good thing to let it all out, and I think we both felt better afterward.)

Anyway, I really must have a mutant cheerfulness gene, because this morning I woke up with a smile. I am not putting any pressure on myself to keep it in place, though. My mood is what it is.

Our plans for today are pretty awesome. Every day, I seem to have a window of like 5 hours where I am functional. So, we are headed to DPAC to see Bring It On with two friends from the neighborhood. Don't worry, I am not driving. Cannot drive on painkillers.

Not being able to drive on painkillers is making me a bit worried about work. I suppose that I will be able to work a half days from home, so there would be no commuting. Do you think it would be bad to try to work on painkillers because I might mess things up? But I do not feel loopy. I am sure that I am lucid. The "no driving" restriction is a liability issue. What if I get into a fender bender and it is revealed that I am on painkillers? That would be bad, even if the painkillers did not cause the fender bender. Plus, honestly, when I run out of energy, there is no way for me to drive home.

I guess it is silly to worry about work until Monday, when we decide what is going to happen (traditional surgery or CyberKnife surgery).

Posted by Karen at 10:06 AM 3 comments:
Friday, April 20, 2012
Disappointing Day
The disc we brought from Duke did not contain the MRI so Dr Morris could not get very far with me today.

That was a huge bummer, to get all the way out there with Robert driving, and not have what we need.

They tried to get it via email but only parts came thru, and not the lumbar part we needed.

So I have to go back on Sunday for an MRI at UNC.

Then on Monday, I go back for an appointment with Dr Jaikumar, who determines whether surgery is a better option.

Even tho Duke said no to surgery, yes to radiation, UNC has to come to that decision on its own.

Its not a trivial decision to go with radiation again because the risk of complications might rise because we're back in the same delicate area.

I got home and slept for hours. Got no stamina.

Sent from my Verizon Wireless Phone


Posted by Karen at 6:11 PM 2 comments:
Hello workplace
We are driving to UNC and just passed the exit for my workplace.

We are talking about Robert's upcoming Europe trip. It sounds fabulous.

That's all for now.

Sent from my Verizon Wireless Phone


Posted by Karen at 8:27 AM 1 comment:
Thursday, April 19, 2012
Tough Day

Whew, glad this day is over.

Being on half the steroids left me in a lotta back pain. But it was still great to be home.

The nurse, when she discharged me, told me NO LAUNDRY and only enough ironing for one outfit. Broke my heart at the time, but turns out I didn't have the energy for anything.

Tomorrow Robert drives us to UNC for an appointment with Dr Morris. That is a long drive, and I really appreciate getting to be the passenger.

Nighty night!


Sent from my Verizon Wireless Phone


Posted by Karen at 10:42 PM 1 comment:
Wednesday, April 18, 2012
Get Me Outa Here
They promise that they are in the process of letting me go home!

I have an appointment with fabulous Dr David Morris at UNC for this Friday morning. At first they were telling the radiation oncology Nurse Practicioner they couldn't see me till May 4, but she explained that I am in the hospital here with symptoms and need to be seen sooner... and magically a cancellation appeared in the schedule for this Friday AM.

The only thing we are trying to figure out is what to do at home about my blood sugar, which is high because of the steriods.

My friend Geogia in Australia reminded me how lucky I am to have access to CyberKnife, which is high-tech pinpoint-accuracy radiation. I am super lucky, especially since I am getting to go back for a second helping. (If you want to know more, scroll down to the end of this home page for the SEARCH field and enter CyberKnife -- or go look at the June/July 2009 posts.)

Mo dropped Lou off here early this morning on his way to work. Thanks, Mo!

I'll be back in the office tomorrow. Funny thing is, all the high-pressure tasks were on Tuesday, and I missed them. My coworkers are the best, and I am sure it all went smoothly without little ole me.

Thanks so much, everyone, for the comments here and in email and on Facebook. It has been a big boost to read all your good wishes. I love the idea that we are bombarding heaven with prayers for me.

Posted by Karen at 10:35 AM 3 comments:
Tuesday, April 17, 2012
More CyberKnife, Please
An amazing thing just happened.

I met with the Director of Radiation Oncology here at Duke, who was really nice. After an examination and a discussion, he suggested that I go back to Dr David Morris at UNC for more CyberKnife!

Because the two sites (L4 and L5) are so close, it is important to know exactly what was done in 2009 as they plan what to do now. So the best thing for me is to go back.

I am pretty happy about that. Everyone here at Duke is awesome, and I would be happy for them to do whatever they want to me --but I also really liked Dr David Morris and know that he did excellent work on me in 2009. So I am thrilled to be going back, if he'll have me, hee hee, as if he might go, "Karen Ross?! Oh no, not again!"
Posted by Karen at 3:01 PM 7 comments:
No Surgery
The orthopedic surgery guy came in and did an extensive and somewhat embarassing exam. I am not going to go into details into what he was interested in, although I will say the exam involved rubber gloves, a straw, a toothpick, and a pair of scissors.

Anyway, no surgery for me!

There is a whole list of awful symptoms that have to appear for surgery, and I have none of them. I was really relieved. The minute I become incontinent or fall down, though, I can get surgery.

So it's just a matter of waiting to hear from the radiation people. A radiation Nurse Practicioner came in already to do a preliminary exam.


Posted by Karen at 12:29 PM 2 comments:
Not About To Fall Down
The good news is, I am not about to fall down and be paralyzed. It's not that urgently terrible.

But the tiny spot on L5 is now a tumor pressing against some nerves, which is probably causing all the pain.

Some time today, a surgeon and a radiation person will comes see me, and then they will discuss the situation with the entire team, and then the team will propose a solution. The thing is, they have to do something or else at some point I could fall down parayzed.

I am stuck here at Duke all day and maybe tonight, depending how long it takes to decide what will be done.

But, I am okay. I am drugged up so that I am in no pain at all.
Posted by Karen at 11:40 AM No comments:
Monday, April 16, 2012
Admitted to Hospital
Oh, man, today did not go as planned.

I guess my CT Scan looked pretty bad, because the radiologist immediately called Dr R. He was especially worried about the tumor next to my spine, the one we irradiated in 2009. It grew.

Dr R called my home number looking for me. He updated Lou, who then told him about all my recent back pain.

Back pain + tumor growth near spine = concern for spinal cord

Dr R found me outside the lab on Floor 0 of the new cancer center. I was waiting for my EKG and planning to go back to the office.

Dr R said we needed an MRI ASAP to make sure the spine isn't being compressed because that can cause paralysis.

Long story short, i am in a johnny, in a hospital bed, waiting for pain meds and the MRI.

Lou is with me! John next door drove him up here lickety split.

Thank God Lou is here.

I just sent email to my manager at work because 3 of my books are supposed to be published tomorrow, and I probably won't be there to do all the last minute tasks.

Sent from my Verizon Wireless Phone


Posted by Karen at 7:35 PM 8 comments:
Tomorrow is Scan Day
Here I am, awake in the middle of the night, with pain in my back and right leg. I was dreaming that the pain would go away if only I got the grammar correct in some document about the pain. Crazy. But I just took something and hope that it kicks in soon so I can get some sleep. Got to wake up pretty early tomorrow.

Actually, this entire week is going to be completely nuts.

Tomorrow (oooh, later today, since it's after midnight) Lou has his annual physical. He's got fasting bloodwork, which means he'll be a bit grumpy and I need to remember not to chatter too much on the drive to the doctor. Then I zoom to work for a short time before heading to Duke for my CT Scan. I'll be getting this scan in the awesome new cancer center, which I am looking forward to, because I heard that you get to wait in your own lovely little room, instead of in a big waiting room.

This is a big important scan. It will show whether the two clinical trial chemo drugs are working. It will determine whether I get to keep on this relatively easy chemo, or more on to something else. Dr R says if there are new tumors, then I am off the clinical trial. I stay on the clinical trial with any other results. Like, if we see a little growth, that would be fine. Significant shrinkage would be excellent, but let's not get our hopes up.

On Tuesday, I zip back to Duke first thing for my own fasting bloodwork. Then work work work, followed by Bring It On at the DPAC. This is a play about competitive cheerleading, where evil rich girls steal the fabulous routines of virtuous poor girls, or something like that. Usually, we see plays on Saturday afternoon, but we had to switch the tickets because we're headed to Massachusetts this weekend.

On Wednesday, Lou and I go to Duke to hear the CT Scan results from Dr R, followed by chemo as usual (unless I get kicked off the trial).

On Thursday, I see a Dr Chris Lin at Cary Orthopedic. He's a spine specialist, and I hope that he can help me with all this back pain. Seven months I have been hoping that it would just go away. That's long enough.

On Friday, we fly to Massachusetts for a memorial for Lou's old and wonderful friend Kevin Little, who passed away last week after a long and terrible illness. When I met Lou in 1990, he was working at a tiny software company called Pacer with Kevin and a bunch of totally awesome people. Those are the people getting together this weekend for the memorial. Kevin was brilliant and funny and warm and expansive. He was a gifted raconteur, and I remember hanging on his every word as he told stories at these Pacer dinners over the years.
Posted by Karen at 1:45 AM 3 comments:
Tuesday, April 10, 2012
Bye-Bye Boo-Boo!
About 36 hours of wax is all it took to reduce my tongue boo-boo to a minor ouchy. Amazing. I still have the wax on, though, because I don't want the boo-boo to flare back up.

I also have a red spot on the roof of my mouth. I can't remember what the heck I was doing, but while I was driving to work this morning, I glimpsed the roof of my mouth in the rear-view mirror and saw an alarming red spot. Honestly, what could I have been doing? Admiring my teeth? (Four years of braces!) Yawning? (I got very little sleep.) Laughing at something on the radio? (I hope I don't guffaw like a hyena.)

I am enjoying using words like "boo-boo" and flinging hyphens about at will, because for the last few days I have been incorporating edits into my documents here at work, and my editor is making me delete hyphens and commas and other punctuation that I am rather attached to.

The pain in my back and right leg kept me awake most of the night, even with all the nerve-pain blocking drugs that I am on. That was a real bummer. I wonder why I feel so chipper. I ought to be dragging. Perhaps later I will just deflate and crumple.

Jeff, I thought about calling you in the middle of the night to chat, but since you just got a new job, I figured you needed your sleep.

Posted by Karen at 9:39 AM 3 comments:
Monday, April 9, 2012
Right and Wrong
Chemo was fine last Thursday.

I brought two boxes of Girl Scout cookies to Duke. I gave one box to the phlebotomists and got a hug. I don't think those poor folks get a lot of love from patients. It's hard to be charmed by the person who jabs a needle into your arm, unless they are very very good at what they do. The other box of Girl Scout cookies went to my chemo nurse, Lynn, who is awesome.

Everything went really well. My port performed magnificently. Afterward, on the way home, Lou and I stopped at the Dim Sum House (yum) for a quick lunch. When we got home, I collapsed on the couch.

The chemo made me really tired. I was completely wiped out for most of the weekend. I slept a lot. I didn't even go to work on Friday, because I was so tired and listless. Me, listless! Hard to believe.

On top of the chemo exhaustion, my back started killing me again on Thursday. The shooting pains, the inexplicable pain near my ankle, the inability to lie down at night -- it was all back just as bad as in December -- but now in my right leg.

I was shocked that my right leg would give me so much trouble. My left leg, that betrayer, I am never surprised by what it does.

I tried to work out the tense muscles like Jaime does in physical therapy, and I ended up with a bunch of bruises. I guess having PT done to you does not actually qualify you to do PT. Imagine that.

So, this back pain. I have been struggling since October with this back pain. That is seven months. My goodness. (For about three months, though, the pain has been under control.) But still, that is too long.

Oh, and I have a boo boo on my tongue. This chemo causes dry mouth and possibly mouth sores. For me, when my mouth is dry, there is one spot where my tongue rubs against a sharp inner edge of a molar and gets sore... This weekend it went from sore to a big white inflamed spot. At the drugstore, I found the wax that kids put on their braces, and that has made a huge improvement because my poor tongue is resting on a smooth surface instead of a sharp one. I wonder how long this will take to heal?

I accidentally ate a blob of wax when I took some pills last night. I was sure that the wax would stick to my teeth! Nope. It washed right down with the pills. I hope there are no carbs in wax. I am temporarily diabetic now, after all.

Posted by Karen at 12:18 PM 1 comment:
Wednesday, April 4, 2012
Flash from the Past
Do you want to see an old picture of me bald?

I just went to Being Cancer, which is a web site that lists lots of cancer blogs. My picture is on the sarcoma page! Sort of shocked me, seeing myself all bald and grinning and dressed in Carribbean cruise type clothes.

Here is the link:

http://beingcancer.net/cancer-blogs-lists/sarcomas/

At some point they will swap me out, but for now, they are using my picture. Too cool. I am the face of the sarcoma survivor.

Posted by Karen at 9:52 AM 4 comments:
She Ate Another One!
Miss Bailey ate my new round hairbrush, too. Good thing this dog is cute, that's all I have to say.

Our dog expert friend Mo thinks that I need to go to puppy school with Bailey. I suggested sending her off to boarding school instead. But no. Apparently the problem is with me. I am the one who needs training. And another new round hairbrush.

Despite having no round hairbrush, I somehow managed to get my hair freaky fluffy again today. If you are in my vicinity, please do not stare.

How are things going? I am hungry and tired.

The chemo is sapping my energy, which is really a very mild and almost pleasant side effect, when you compare it to barfing. Plus, I did not sleep long enough last night. My back hurt just enough to keep me awake for a long time. Luckily, I had physical therapy this morning, which helped tremendously. Of course, I had to wake up super early to get to that appointment on time.

But why am I hungry? This whole diabetic thing, counting carbs and being good and checking blood sugar levels. It's actually working out great because I have lost a few pounds. And lunch is only, let's see, three hours from now...

Tomorrow is chemo day. I get the infusion in the morning and then take a pill at night. I plan to spend the afternoon on the couch watching Season 5 of Doc Martin, which just arrived in the mail. Yippee, yippee, yippee!

Posted by Karen at 9:44 AM No comments:
Monday, April 2, 2012
Bad Hair Day
On Friday, during my haircut, I asked for help styling my hair. Three years with little or no hair made me forget the basics of blowdrying, plus I threw away all my hair product -- and Bailey just ate my round hairbrush.

So Renee at EnV Color Bar in Apex showed me how to dry my roots first to gain height, and then she sold me a spray bottle of this magical powerful stuff that makes your hair defy gravity.

I did okay on Saturday and Sunday, but this morning, it went horribly wrong, and I ended up with a lot of hair standing straight up, next to some hair flopped really flat. Nightmare. But I was already running late and could not spare the time to stick my head under the faucet and start over.

So I found myself driving to work, catching glimpses of my freaky 'do in the rear-view mirror, and feeling mighty bad. Then I remembered all the days I had to wear a hat -- or worse, a wig -- because I had no hair.

No day with hair can be as bad a hair day as a day with no hair.

(That sentence makes my head spin, but it lifted my heart.)


3:45PM Update: my hair has settled down, and it does not look as bad as it did at 10:00AM.
Posted by Karen at 3:47 PM No comments:
Saturday, March 31, 2012
Been There, Done That
Once again, chemo has made me diabetic!

My blood sugar has been creeping up, and now I am officially diabetic. Let's hope it's temporary. It was temporary last time (winter 2009 to spring 2010).

My primary care physician explained that an A1C over 6.4 is diabetic. Mine is 6.8. So I am just a little diabetic. But the team over at Duke says it will just get worse. So I started restricting my carb intake, checking my blood sugar levels, and taking a really low dose of glimepiride (Amaryl) a couple days ago.

Lou is happy. Well, perhaps "happy" is a bit strong. But planning meals is admittedly easier when both people are counting carbs. No more, "Let's have pancakes!" outbursts.

I figured I had better get the word out.

For my birthday, master cookie baker Tinalynne sent me a huge bag of yummy homebaked chocolate-chip and mini-M&M cookies. To be honest, we saved four cookies in a baggie, and I brought the rest to work. I left them in the breakroom. Wolves descended. Cookies were gone in record time.

Also for my birthday, my friend Carol gave me white and dark Godiva chocolate balls. OH MY GOD. The single dark chocolate ball that I ate was amazing. (I had to give away all the white chocolate balls because, really, they aren't chocolate, and they creep me out.)

Other birthday presents did not present any diabetic difficulties: a fluffy pink and brown cuddly knitted throw from Sylvia, a gorgeous Waterford butter dish from Mom and Dad, an amazing cast iron teapot from Cindy and Mike, a pretty glass bowl from John and Pat, and a NEW COACH BAG from Lou.

How lucky am I, right?

Posted by Karen at 3:37 PM 2 comments:
Tuesday, March 27, 2012
Happy Birthday To Me!
Today is my 47th birthday!

That still mid-forties, right? I am not in my late-forties yet.

This has been a great day. Lou delivered a cuppa to me in bed, made me breakfast, and then gave me all the presents that have been arriving in the mail from my wonderful friends and family. Awesome. I am working from home today, so that I could be here when the landscaper came to talk about Spring Cleanup. Plus I got to go to lunch with Lou.

I am feeling really good. I know my last post was pretty serious, but it was really good to get it off my chest, because I felt a whole lot better immediately afterward. Actually, right after I clicked Submit, I found Lou and told him all about it and cried a little and got a big hug. (I always have to warn Lou if I post something serious because then people call him and he feels silly if he has no idea what they are talking about. He doesn't read the blog, he says, because he gets to live it!)

I appreciate all the calls and email and comments from all y'all.

For some reason, my mindset is firmly back into putting up with the chemo, and staying as healthy as I can, while I wait for someone to come up with a cure.
Posted by Karen at 2:38 PM 5 comments:
Sunday, March 25, 2012
Two Milestones
Recently, I have had two milestones on this journey. They aren't nice milestones. And, I think that they are related.

Milestone one: chemotherapy finally made me throw up. I know, it's almost impossible to believe that I have not thrown up till now. I have had so much chemo. And I have been nauseated, let me tell you. But I have always been able to control it with meds, till the Sunday before last. You know what, it wasn't all that bad either. I really hate to barf, don't get me wrong. But I guess I had built it up in my head that chemo barfing would be super awful. It wasn't. It was just normal barfing. And since all I had eaten was applesauce, well, it could have been worse.

Milestone two: based on my bloodwork, I had to skip chemo. Till now, I have been lucky. My bloodwork was always good enough to proceed with the next dose as planned. But last week, because my platelets were too low, we had to change the plan. Don't get me wrong. I was thrilled to change the plan. I just want to note that this was the first time I haven't bounced back quickly enough.

These two milestones might mean nothing.

Or they might mean that things might start to get a little more difficult.

No way to know. Just got to soldier on, see what happens next.



That was dramatic. It came out that way. It sort of surprised me. But I guess I should admit that I am upset about something, and I have not wanted to write about it. So maybe I will just blurt it out and get it over with.

In the last few years, I have "followed" three cancer survivors' blogs. I love those three people. Daria was a breast cancer lady in Canada who posted sweet comments to my blog and just drew me in with her stories about day to day life fighting cancer. Marco was a guy out in California with a soft tissue sarcoma whose blog I found because he was taking the exact same clinical trial drug that I took in the winter of 2010. It was his wife (The Wife) who blogged. I was always jealous of Marco because they let him have surgery. And Jean was this super funny, brilliant lady in England who had leiomyosarcoma, exactly what I have. The thing is, they have all died.

First, Daria went, and it was a huge shock to me. Stupidly, I hadn't prepared myself for that possibility. I remember crying and feeling awful, but also feeling weird because I never actually met this lady, I just read her blog and felt that she was my friend. It was hard, but I still had Jean and Marco. I stuck close to Jean because we had exactly the same cancer and took a lot of the same chemo. Oh, but every milestone for Jean gave me something else to worry about. Like, when suddenly she couldn't walk and was writing about life in a wheelchair. Then she died, and I was really upset. I feel bad about this, but I started skimming The Wife's posts about Marco. I put some distance between us in my head. Just in case. Like I had to protect myself. And now his fight has ended, too.

Daria and Jean are still on my list of followers, and sometimes I go look at their pictures. Marco probably never even knew that I existed. Because I am not following anyone else, those last few posts about Marco are sitting there at the top of my reading list, and I see them every time I come in to post something. So I guess I finally had to talk about it. But I am not ready yet to look for someone new to follow. I'll know when I am ready.

Posted by Karen at 7:44 PM 3 comments:
Friday, March 23, 2012
Port Authority
My beloved port has been acting up for a couple of weeks. Crazy slow blood return, perfect blood return, and then yesterday absolutely no blood return.

Blood return is when the nurse uses the port to pull blood out of me.

A port is a small medical device implanted under the skin in the upper chest so that drugs can be injected directly into the jugular vein, which is a lot easier than getting an IV every time I go for chemo. My port, which I love love love, is a Bard Power Port.

Yesterday was so bad, the nurse could neither get blood return nor flush (which is to push saline into me). Now that is bad! Till yesterday, they could always flush.

So when I got up to the chemo treatment room, I knew that they would have to TPA my port. That's when they inject some nasty cleaning fluid to melt away whatever blood clot was blocking the port from working. Then they draw out that nasty cleaning fluid and discard it. While the cleaning fluid is in there, they hang a note on me that says "Do not flush!" so no one flushes the cleaning fluid into me, although one nurse told me once that it would not kill me. Nice.

Two weeks ago, the nurse TPA'ed me, but only for 30 minutes and resulting only in a tiny improvement. So yesterday we knew we were in for a much longer wait. It took an hour and a half, but then my port was running perfectly again.

As a result, Lou and I didn't get outa Duke till 2pm. We went to lunch at Elmo's Diner in Durham, and finally got home at 4pm. I collapsed on the couch. I was exhausted. I guess it's a combination of chemo and stress, but I am completely wiped out on chemo day.

So, I am headed to work, but I am going to be late. I slept ten hours last night, on top of dozing on the couch in the late afternoon.
Posted by Karen at 9:36 AM 1 comment:
Saturday, March 17, 2012
Spontaneous Happiness
On Thursday, after we got the good news that I was not having the tumor biopsy and that I was off chemo till the following Thursday, I turned to Lou and said, "Let's go away for the weekend!"

We had been talking about running up to DC to see the shuttle Discovery arrive at The Smithsonian at the end of the month... but this weekend was a gift. I was practically guaranteed to feel great, so we had to go somewhere.

First, of course, we had to figure out how to get home from Duke! Ha! Two people could not help, but the third could. (Christy, we love you.)

Anyway, we spent 30 minutes at home surfing the web, and we chose to come to Orange, Virginia, to see the home of James Madison, our fourth president. Yesterday they celebrated Mr Madison's 261st birthday. So we are here for his birthday.

Plus, earlier this year, I read Founding Gardeners, which was about how some of our founding fathers were very interested in agriculture and gardens and the amazing natural abundance of America. Madison was in there, a big section on how he laid out the gardens and forrest at Montpelier, and now we are going! In a couple hours I'll be walking in those gardens.

Plus, Lou just finished reading James Madison, which was the story of his life and his contribution to the constitution.

So Montpelier, as a romantic weekend getaway, could not be more perfect for us!

Posted by Karen at 9:16 AM 3 comments:
Thursday, March 15, 2012
Cancellation Day
The tumor biopsy has been cancelled!

Turns out, my platelets are too low for surgery. They dropped to 44. The minimum required for surgery is 50.

Yahoo!

I immediately asked for some water.

Then Lou got on the phone to cancel Mo driving us home at 4:00.

I called Christy at work, and she's on her way to get us.

Right now we are outside, enjoying the fine sunshine, happy to be going home.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:05 AM No comments:
Wednesday, March 14, 2012
Hope Time Flies
I hope that time flies on Thursday.

Too early, my alarm will ring. 5:45 to be precise. I get to have a normal breakfast but then nothing after 7:00, no water, no nothing.

John will bring us to Duke, and leave us there.

Labs at 8, Dr R at 9...

Then we just hang out for hours waiting for my tumor biopsy at 1:00.

This time, I will not have an IV in the back of my hand. That just hurts too much. My original plan was to get my port accessed for labs and leave it accessed for the tumor biopsy. But getting my port accessed can nauseate me. So I'll just go with the IV for labs, and another IV for the tumor biopsy, but refuse to let the IV go into my hand. Maybe I'll slap a bandaid on it to reinforce that it's off limits.

The tumor biopsy will be followed by 2 hours in recovery. We'll get out around 3:30 or 4:00.

Lou has arranged for someone to bring us home. Maybe Mo?

I should be asleep now but I'm wide awake.

Sent from my Verizon Wireless Phone


Posted by Karen at 10:30 PM 1 comment:
Monday, March 12, 2012
Medicate Me
In retrospect, I really let the nausea get out of control before finally taking a Zofran yesterday, but by then it was too late. Barfing was inevitable.

I think I was in denial about the nausea. I kept thinking that I couldn't be nauseated (even while I was holding my breath and pressing my hand to my mouth to hold back the tide) because nausea wasn't supposed to be a problem with this chemo. The paperwork didn't stress nausea, and the doctor and nurses only mentioned having anti-nausea meds on hand once.

Maybe I have had so much chemo, I'm easily nauseated. Nice.

Plus, I only took Zofran because Lou suggested it. My first reaction was like, "What? No." but then I thought, "Hmmm, he's usually right..." (Isn't that sweet? Isn't that what every husband wants his wife to think?)

Today will be different! This weekend, the nausea arrived after every meal, so I have delayed eating breakfast till now. I am eating a half bowl of wimpy cereal as I type. Awhile ago, with my morning bucket of tea, I took a Compazine (another anti-nausea drug) with all my regular morning pills. I hope that Compazine + Small Breakfast = Zero Nausea.

Alas, the Compazine usually makes me sleepy. I could probably use some extra sleep.

So I am going to work from home today, just in case. I do not relish the prospect of running down that long hallway to the ladies room if I suddenly have to throw up. I guess the better idea would be to just barf in my waste basket in my office and then casually stroll down the hall to the ladies room.
Posted by Karen at 9:09 AM 2 comments:
Sunday, March 11, 2012
I Barfed
I took an anti-nausea pill at 3:30, and it seemed to be working, but then I barfed.

I feel better.

We're watching Psycho.

Sent from my Verizon Wireless Phone


Posted by Karen at 5:53 PM 2 comments:
Feeling Lousy
First of all, this is not nearly as bad as last summer. But it's not that great either.

I got chemo Thursday and also started the second drug, a pill, on thursday night.

I have ended up in bed fri, sat and now sun.

It's like just an awful feeling all over. A mix of pain and nausea. Plus my bulging disc is acting up.

Hey leave me a cheerful comment, will ya? I could use it. 95% of the comments I've been seeing lately are spam "buy drugs over the internet" comments that the website immediately removes, thank God.

I hope this chemo is working. I hope the pain is from tumors getting attacked.

Going to try to fall asleep now.

Sent from my Verizon Wireless Phone


Posted by Karen at 12:34 PM 4 comments:
Thursday, March 8, 2012
235 Million Dollars
This morning I am headed to Duke for chemo. Today, I have my first appointments in the new Duke Cancer Center, which cost a reported $235 million.

I am pretty psyched to see it. Staff who took tours have been telling me how pretty and luxurious and private it is. Like, instead of getting chemo in a big room where everyone can see you, you are in a little room in a super recliner, all private. Hmmm. I sort of enjoy the drama of other people and their families.

Back in 2010, when I first saw signage promising that the new cancer center would be open in early 2012
, I wondered if I would be around to see it. (I am always thinking morbid crap like that, can't help it, but hardly ever share it because it makes people uncomfortable.)

So, I start my day with labwork in the new cancer center, then I go back to the old South Clinics to see Dr R (who moves next week to the new cancer center), and then I head back to the new cancer center for chemo at noon. Luckily, both buildings are right next to each other. Lots of walking today. Got my new sneakers on.

Today I get BOTH chemo drugs! Powerhouse punch! Watch out, cancer, we're coming to get ya.
Posted by Karen at 6:55 AM 2 comments:
Wednesday, March 7, 2012
Happy Dance (illustrated)





Thanks, Sandy! I love it.
Posted by Karen at 6:32 PM No comments:
Monday, March 5, 2012
Happy Dance!
Been awhile since we did the Happy Dance, eh?

Nurse Jenny called me this morning to officially inform me that the clinical trial powers-that-be have decided to let me skip the rest of the skin biopsies, because of my complication this weekend (that is, my stitches came undone and I had to get the wound re-cut and re-stitched on Saturday at a random urgent care near my house).


YAHOO!
HAPPY DANCE!
YEAH BABY!




No more skin biopsies! No more holes punched, no more open wounds dripping with surgical lubricant, no more Saran Wrap in the shower, and no more stitches!

On Saturday morning, I thought that stitches unravelling was a bad thing. But it turns out that it was a good thing. Ya never know.
Posted by Karen at 10:49 AM No comments:
Sunday, March 4, 2012
Such Neat Stitchery



I was really impressed with my replacement stitches when I took off the bandage this morning.

PA Chris at FastMed did an amazing job! I will have hardly any scar.

Nurse Jenny apologized profusely on the phone yesterday. Because of this "complication," she'll request that I get to skip the third set of skin biopsies, which would be awesome.

Sent from my Verizon Wireless Phone


Posted by Karen at 12:43 PM 1 comment:
Saturday, March 3, 2012
A stitch in time saves nine

My stitches came unravelled last night, so this morning Lou and I went to FastMed Urgent Care.

A PA named Chris did a great job. He had to freshen up the wound edges (cut away some flesh) and clean out the hole and then stitch it all closed, nice and neat, with good knots that won't unravel.

Chris is getting married this month, so we wished him luck and a long happy life.

I will post a photo of his handiwork tomorrow when the bandage comes off.

I sort of had a tearful meltdown over this, this morning. Just one too many things to deal with. But the tears freshened me up, and i feel lots better.

Sent from my Verizon Wireless Phone


Posted by Karen at 11:16 AM No comments:
Friday, March 2, 2012
Yuck-o-rama


I have a lovely stitched-up hole on my left arm, and another one on my right arm. This picture shows my left arm.

The nurse practicioner who stitched me up left this one sort of gaping open, huh? Totally gross. I don't even want to look at it. I'm not sure if she just didn't do a great job, or if there's a medical reason to leave it gaping open.

The rash is caused by all the sticky bandages.

They are harvesting these skin samples for research for the clinical trial, to measure how well I heal in a week, before and after chemo. I am happy to do this, in the hope that it aids their research so they can make the chemo more effective in the future.

First, they take a small sample skin sample -- that is, they make a 4mm hole in my arm. For the next week, I have to keep that hole covered up and lubricated, so it does not scab over. (That is super gross.) Then, they take a larger skin sample -- that is, they make a 5mm hole around the original hole and immediately stitch the whole thing up.

It doesn't hurt, which is amazing. They really numb me up while they are doing it. Even when the numbness wears off, it doesn't hurt unles I whack it by accident. Of course, it hurts my brain to have to change the bandages and lubrication twice a day.

I have only one more set of holes to get through, starting with a small hole next Thursday.

Yesterday, I had my checkup, and I am fine. My platelets dropped from 130 to 51, but that is not terrible. My blood pressure was a little high.
Posted by Karen at 2:27 PM 1 comment:
Wednesday, February 29, 2012
Forgot to Tell You I'm Fine
Hey, I completely forgot to check in after my first chemo and tell you that I am fine! I didn't even realize it until a bunch of people started asking how I was doing.

Last summer, after chemo, there would be a week of radio silence because I was not fine, I was really messed up. But this week, the radio silence was me just getting busy with life.

Maybe I have not been 100% perfectly fine. I had a few minor issues. I have been a bit tired in the afternoons, I seem to be sleeping later every morning, and my mouth is dry. But no nausea! Yahoo!
Posted by Karen at 10:42 AM 2 comments:
Thursday, February 23, 2012
What a Long Day
It's not over, yet, but we're close.

I am unhooked but I have to sit here and continue to be observed for another 30 minutes.

The chemo was fine.

Originally Darlene was driving us home, but this took so much longer than expected... Darlene has to get her youngest to a concert tonight, so we couldn't ask her to hang out here with us indefinitely.

Lou found us another ride home. Gail is picking us up. Gail is an angel!

I am nauseated from them flushing my port multiple times. Not from the chemo. Funny!


Sent from my Verizon Wireless Phone


Posted by Karen at 4:37 PM 2 comments:
Busy Day Today
Lou and I are basically spending the entire day at Duke today.

John will deliver us to Duke by 10:00am. We go to clinic 1C for additional skin biopsies. They'll punch a bigger sample around the small hole they already made in my right arm, and then they'll sew it up nice and neat. Then they'll punch a small sample off my left arm, and I'll have to keep the hole lubricated and covered for the next week.

We head to clinic 1A for bloodwork at 10:30 -- I am POSITIVE we'll be late, because they'll need more than 30 minutes to do all that punching and sewing. Then we get to chat with Dr R. at 11:30ish.

Lunch... there is now a Subway next to the Chick-Fit-A in the cafeteria in the basement.

Then at 1:00, it is time for the liquid part of the new chemo. It's going to be injected (infused?) slowly, over an hour, to make sure I am cool with it. (In the future, it'll take only 30 minutes to inject.) Then we have to sit around for an hour (or maybe two?) to make sure I don't have a reaction.

Finally, we head to Starbucks in the hospital to hang around waiting for Darlene to get off work and come pick us up and bring us home.

I am not allowed to drive myself today, but I will be able to drive myself to future injections. I'll get an injection every other Thursday till it stops working and they kick me out of the clinical trial.

Lou just reminded me that we're leaving here at 9:00, so I had better wrap this up...
Posted by Karen at 8:11 AM 1 comment:
Monday, February 20, 2012
Please Stop Moving Your Arm
"Karen, please stop moving your right arm," ordered the nurse who had just set up a somewhat painful IV in my left hand

I hadn't moved my right arm, as far as I could tell. "Okay," I agreed anyway.

Then she started laughing and apologized. She had been trying to get a blood pressure reading, and it wasn't working, and so she had assumed that I was moving my right arm around. But the real problem was that she hadn't put the blood pressure cuff on me yet.

Apparently it does not work so good if it is not attached to the patient.

So far, the process of setting up for the tumor biopsy had been going fine.

Right at the beginning, there has been a bit of an unpleasant jolt when the junior doctor explained that they would be taking three samples during this tumor biopsy. I had thought that it would be one sample. In retrospect, I should have asked them to take like 40 samples and scoop it all out of me! But at the time, I was thinking that if it hurt, it was going to hurt three times, not just once.

I let myself daydream for a few seconds about turning to Lou and telling him that I changed my mind, get me out of here. But I really want to get started with the chemo, and I'll pretty much let them do whatever they want.

So I just signed the consent paperwork and climbed into the bed in the procedure room.

The ultrasound machine was on my right, and a nurse and the junior doctor used it to look at the tumor next to my pancreas and liver. That's the one they would use for the biopsies.

How many TV shows have I seen with ultrasound being performed on pregnant ladies, and they walk away with a picture of the baby? And then they show off that picture to everyone? I started laughing because I wondered if I was going to walk away with a picture of the tumor.

Everyone was pretty nice and relaxed, and I found myself laughing and joking. The nurses at Duke are just the best.

There was a second-year med student there, patting my left arm and chatting with me soothingly. When I asked if she would be participating in the procedure, she assured me that she would not be doing anything except observing.

At one point, I realized I was completely tense, like my entire body was clenched like a fist. So I made myself relax and sink into the bed. Eventually they would use the IV to give me drugs for relaxation and pain.

After a lot of setup, the senior doctor swept in like a king and started giving orders. They showed him the ultrasound and discussed the plan. Pretty quickly, they numbed the area and the senior doctor went for the first sample.

I am pretty squeamish, so I didn't look. (I don't ever look.)

But I felt pressure as they inserted the needle thing. At that moment, the blood pressure cuff started inflating, and that hurt a lot more than the needle thing! There was a loud SNAP and they got the first "core sample." They brought it over to a tray way on the other side of the room and someone verified that it was good.

Second sample was also quick. I felt pressure, a bit of discomfort.

Finally, it was time for the third sample. I was thinking, "It's almost over, it's been okay so far, it's almost over..." The junior doctor got to take the third sample. It took a bit longer and hurt a bit. But I guess everyone has to start somewhere.

Good thing they didn't need a fourth sample, because maybe they would have invited the med student or the janitor to have a go...

Then they were bandaging the area, whisking me off to recovery, where I got soda and crackers and my sweetie Lou. They watched me for two hours and then released me.

Really, the whole tumor biopsy process was as pleasant as they could have made it, which is good, because I have to do it all over again in a couple of weeks.

A million thanks to John for driving Lou and me!
Posted by Karen at 8:34 AM 2 comments:
Saturday, February 18, 2012
I Wasn't Thinking
Weeks ago, I made a massage appointment today. I figured after everything that happened this week, I would need a massage to relax and rejuvenate. But I wasn't thinking about whether I'd be able to lie on my stomach.

For the tumor biopsy yesterday, they stuck a needle-like instrument three times into my lower chest area.

When the pain meds wore off, I was sore.

Last night, I could sleep on my back, and on my right side, totally comfortably. But I was uncomfortable sleeping on my left side. I was not brave enough to try sleeping on my stomach.

So, how I am supposed to go for a massage today? I just wan't thinking.

Oooh, our big goal today is to go try out some mattresses.
Posted by Karen at 7:37 AM 2 comments:
Friday, February 17, 2012
Home Safe and Sound

I am home, safe and sound after having three core biopsies performed at Duke this morning.

It went really well. I'll make a detailed report maybe tomorrow.

Pain meds have not worn off yet.

Many thanks to John for driving us and for hanging out at the hospital for so long.

Sent from my Verizon Wireless Phone


Posted by Karen at 1:28 PM 1 comment:
Hole in My Arm
I have just a couple of minutes before we jump in the car with John and head to Duke for the tumor biopsy.

Just wanted to let you know that the skin biospsy was a breeze.

But twice a day, I have to replace the bandage and lubricant over what is essentially a red hole in my arm. Yuck-o-rama.

No scab will form with the lubricant, which is what they want. And in a week, they take a bigger biopsy in the same spot, to capture whatever heaaling occurred.
Posted by Karen at 8:10 AM No comments:
Thursday, February 16, 2012
Long line at checkin desk
Just arrived at Duke clinic 1C for my first skin biopsy.

There are six people in line ahead of me.

I hope I get checked in fast so I am not late. Does not look good.

Sent from my Verizon Wireless Phone


Posted by Karen at 9:58 AM No comments:
Wednesday, February 15, 2012
Gotta Pee
Nurse Jenny called this morning to let me know that I was supposed to provide a urine sample yesterday.

So now I am back at Duke.

Sent from my Verizon Wireless Phone


Posted by Karen at 12:12 PM No comments:
Tuesday, February 14, 2012
"Expanded Cohort" Correction
I am sitting in the hallway outside clinic 1C, waiting to be called for blood-letting.

I already met with Jenny and signed all the consent paperwork to get into the clinical trial. Oooh the list of side effects!

Here is the correction. I am in the expanded cohort -- but what does that mean? I am NOT in the group of people getting the highest dose. I am in the group of people getting the dose that is effective and best tolerated.

That is really great news!


Sent from my Verizon Wireless Phone
Posted by Karen at 10:07 AM 2 comments:
Monday, February 13, 2012
Ashley and Her Mom
A little over a week ago, I was adding a bunch of medical appointments to my calendar, and I was feeling sorry for myself, and then I got email that blew me away. I got permission from Ashley to share it with you.


Hi Karen,

I found your blog about a year ago. My mom was diagnosed with LMS in January 2011. She too had fibroids - or what the doctors thought were fibroids - and she too had a hysterectomy after which the doctors discovered the cancer. At the same time, she had a cyst on her ovary that also turned out to be cancerous, and it ruptured before the doctors even realized the cancer was there. We live in NC and she too sought treatment at Duke with a Dr R, maybe the same as yours.

When I found your blog, I looked at your smiling face, with short hair, on the homepage, and I thought, that is not my mom. My mom can't do this, she can't make it through 4+ years of the poking, prodding, testing, waiting... But I remained hopeful. While her doctors gave her around 18 months to live, I told her about your blog, and how you have made it, living with this cancer, not dying from it.
But after radiation & a few weeks of chemo, she said, "I can't do this anymore. I would rather have only 10 days of being at home & smelling my roses than 10 years of this treatment." For a few weeks after, she seemed ok. She even stopped taking her pain meds altogether.

On memorial weekend, I was visiting my parents, and my dad sprained his ankle. My mom & I took care of him, together, one last time. She died on June 25, 2011.

Now, reading your blog is like reading an alternate universe, one in which Mom is still here & undergoing treatment.

I don't even know why I am sharing this all with you. I guess i just wanted to let you know that you inspired hope in myself & my family while Mom was fighting her own cancer, and I know you have inspired so many others whose doctors have told them they would not live with this cancer longer than a number of months. And I am praying for you, I AM cheering you on. It's like you & my mother, although strangers, were on the same team, and now I'm cheering you on to take the team to the finish line.

Yours,
Ashley N
Posted by Karen at 1:25 PM 3 comments:
Thursday, February 9, 2012
Vitamin T News Flash
Bailey must really think that Vitamin T is necessary to support her general well being, because she gets a big dose as often as she can. You're not familar with Vitamin T? I'm no doctor, and I hesitate to give medical advice, but... It's toilet paper. Bailey loves eating it. She doesn't just enjoy how it magically flies off the roll in the bathroom, but she munches it down like nacho chips. We have to keep all the bathroom doors closed, or else she might overdose.

Lou and I both have colds. This must be some kind of superbug, because Lou caught it. He never gets sick. He has the strongest immune system. Of course, it helps that he comes in contact with few people, living his hermity life working from home.

One bright spot: new Kleenex cool touch tissues. OH DEAR GOD these are so awesome. Worth every penny. My nose was raw, and now it's not. I wish I could wrap up my entire body in these tissues. Too bad these guys aren't running my clinical trial.





Let me lay out what's going to happen next week, because it's a BIG week.

Tuesday: early morning I go to Duke all by myself for fasting labwork, and then I eat breakfast somewhere and zoom to work. In the late afternoon, I go back to Duke for a CT Scan, which will serve as the baseline for the clinical trial.

Thursday: mid-morning I go to Duke all by myself for the first skin biopsy. It's called a punch biopsy, which indicates that you'd rather get punched in the face than have it done to you. This will be the first of six skin biopsies! Afterward, I zoom to work, unless I am a big baby and decide to go home to watch movies all day.

Friday: early morning I go to Duke with Lou and John, with John driving and me fasting, for the first tumor biopsy. It's an ultrsound-guided biopsy, so it ought not to be as grueling as the CT-guided biopsy I had in 2009. They use conscious sedation, so I cannot go to work afterward. I cannot sign official documents, either. Afterward I go home and watch movies all day. This will be the first of two tumor biopsies.
Posted by Karen at 12:23 PM 1 comment:
Sunday, February 5, 2012
Super Bowl XLVI
I am always as old as the Super Bowl. So this year, it's Super Bowl XLVI, and I am XLVI years old!

Of course, at the end of March, I'll be turning XLVII. Ooh, ooh, now that I am fooling around with Roman numerals, I realize that Lou is L years old. Poor Lou. L must be hell.

This is the calm before the storm. In about an hour, people will start trickling in.

We are completely ready. I have a cold, so I had nothing to do with any food prep. Actually, I had very few tasks assigned to me this year. Lou did almost everything. I was responsible for prepping the hallway coat closet. There are now 30 empty hangers in there, and all dust bunnies have been banished.

I'm hoping at some point tonight, Lou will take my picture, so I can update the photo on this site.

After I am done here, I think I am gonna have a quick lie-down. I don't want to run out of steam before the game is over.

So, here are some details about what I have been calling Option 3. From now on, I'm going to call it The RAP Study. That's what they call it at Duke. And Lou always pipes up with, "Wanna rap?"

It's a Phase I trial of the IGF-1R antibody AMG479 in combination with Everolimus and Panitumumab in patients with advanced cancer.

If you were counting, that is three drugs:


AMG479
Everolimus
Panitumumab

But I am getting only two of them. I am not getting the Panitumumab. That part of the study will happen later.

At one point, I suggested to Dr R that maybe I should wait till all three drugs become available, and he said he's not that excited about the Panitumumab. He thinks it's better to get just the first two. (If you are reading this at some point in the future, and you are getting all three drugs, then I am sure Panitumumab is super awesome, and Dr R just said that to dissuade me from dilly dallying!)

Everolimus is a well-established mTOR inhibitor. The clinical trial is to see how well it works in combination with a new drug, AMG479.

I wonder why they are calling it "The Rap Study." Those three drugs don't spell RAP. More like AEP, which is kind of un-pronounceable.

Yesterday morning, I started updating our shared calendar (which shows up on our mobile phones) with all my appointments. They have been coming in email from Duke. Paperwork, labwork, tests, scans, biopsies, yikes. I was a little overwhelmed yesterday. Then late in the afternoon, I got this amazing email out of the blue that totally blasted me out of that funk.

I'll have to tell you more about that email after I reply to it.

So now I am ready for my appointments. Bring It On. This Rap Study might be exactly what I need to kick some cancer butt.
Posted by Karen at 4:32 PM 1 comment:
Thursday, February 2, 2012
Blind Date
Twenty one years ago, Lou and I went on a blind date. We had dinner at a Chinese restaurant followed by a folk music concert at a fancy coffee shop in Westboro, Massachusetts.

Lou was the smartest, most charming guy I had ever dated. Also the first guy who made more money than me. Since we were both in computers, we had a lot in common.

I had a great time. But after that first date, he threw away my phone number. These days, he claims it was an accident.

Anyway we are hanging out today.

I am getting email from Duke to set up all my appointments.

On Valentine's Day, I'll go in the morning for labwork (requires fasting). Then I'll go to work for a few hours. And I'll finally head back to Duke in the afternoon for a CT Scan to get the official measurement of how much cancer there is before the clinical trial starts.


Sent from my Verizon Wireless Phone


Posted by Karen at 11:57 AM 5 comments:
Tuesday, January 31, 2012
I Chose Option 3
Yesterday I sent email to let Nurse Jenny know that I want to do the Phase 1 clinical trial at Duke.

When I get home tonight I will look at the paperwork and tell you which two drugs are in this trial.

I found out that I will be in the "expanded cohort," which means I'll get the maximum dose and have 3 sets of skin biopsies instead if 2.

Lou was pretty funny about it. He pointed out that it cannot be as bad as ifosfamide last summer! So true.

Right now I am waiting for PT... Afterward I head to the office.


Sent from my Verizon Wireless Phone


Posted by Karen at 10:03 AM 1 comment:
Saturday, January 28, 2012
Memphis!
Today we see Memphis at the DPAC! I see on the web that it is loosely based on the true story of the first white DJ to play black music on the radio, in the 1950s. I am pretty excited.

The pain in my back is greatly reduced, so I think that bringing back one Celebrex per day is doing the trick. Since I couldn't get 100% off the Celebrex, I am moving on to the next drug on the list, neurontin, and starting to reduce it as directed by my doctor.

I am really leaning toward option 3, because that is the one Dr R is excited about. But I have to finish reading the paperwork and talk to Lou.

 

 Friday, January 27, 2012
Had a Good Cry Last Night
Thursday night is poker night, and Lou was next door at Nick's with all the guys. So Bailey and I had the house to ourselves. That hardly ever happens!

I had a good cry, which Bailey didn't really like. She sat next to me, and then ran off, and then came back again... But the thing is, I must have needed it, because I woke up this morning feeling a lot better, emotionally.

My back, however, is bothering me again. So if you see me walking around hunched over, that's why.

We are going to choose an option this weekend. There is too much happening today for a decision.

Ha, I was going to write "an informed decision" but the part that gets me is, these decisions aren't all that informed. Not a lot of info available, at least not the kind of info that I want.
Posted by Karen at 9:27 AM 2 comments:
Thursday, January 26, 2012
Bad News Piled Up Yesterday
The initial bad news yesterday was a shocker. We'd been expecting good news. I feel great, and we'd never gotten bad news so soon after starting a chemo. So we weren't prepared. I had thought about trying to convince Lou to stay home. I hated the idea that he was wasting his time, coming to this routine appointment with me.

Once I realized it was bad news, we started talking pretty seriously about what my options were. That was complicated, trying to decide what to do next. Didn't leave a lot of room in my head to feel sorry for myself.

More bad news came later, though. After we got home, we talked to a nurse on the phone, who was reading things off the CT Scan report that we had not talked about with Dr R. Like, the tumor in the pancreas is now much larger and outside the pancreas and "infiltrating the liver." That can't be good. And there is a new mass, down near my bladder that is about an inch.

I was upset last night and had to set it all aside after surfing the web for awhile. But I did get to talk to Dr R today. He thinks that the tumor is not infiltrating the liver. To him, it seems to be pushing up against the liver. In general, sarcomas don't infiltrate organs. And if a tumor does infiltrate, it typically does so with finger-like growths. And my tumor shows no finger-like growths.

Plus, he said it wouldn't be so awful if it were infiltrating, because the liver is pretty big. But that sounds like not worrying too much if there are mice in your kitchen, since your house is pretty big.

Here are the three options:


Clinical trial of Dacarbazine vs Eribulin
Clinical trial of Dacarbazine vs Yondelis in South Carolina
Phase I clinical trial of two other drugs together
There is some strategy in choosing the next treatment. If I choose option 1, then I can never do option 2. I can get Dacarbazine at any time (it's an older chemo drug well established for LMS) but then I can never do options 1 or 2.

We were leaning toward option 3, but there are some yucky requirements for the clinical trial, like multiple skin biopsies and tumor biopsies. Option 3 does not sound fun. But Dr R thinks that it is an exciting combination of drugs. I cannot remember the names of the two drugs. I have a whole big handout on option 3 but I don't feel like going to get it.

So right now I don't know what to do. this is the most difficult time, trying to decide. Once I decide, then it is much easier. I have a goal, something to focus on.

The thing is, there is no guidance on which one will be more effective for me, and which one will be easier for me to endure. So it is a crap shoot.
Posted by Karen at 9:51 PM 3 comments:
Wednesday, January 25, 2012
Bad News
So the lovely easy pleasant pazopanib chemo is not working.

All tumors grew. Bummer. The one in pancreas grew by 20%.

Three options... More details to follow.



Sent from my Verizon Wireless Phone


Posted by Karen at 12:18 PM 4 comments:
Tuesday, January 24, 2012
Done

What an amazing appointment. Everything was fast fast fast.

I cannot believe that I am done.

Gonna head back to the office... And I'll try not to think about this again for the next 18 hours.

Results at 9:30 am.


Sent from my Verizon Wireless Phone


Posted by Karen at 3:28 PM 1 comment:
I am at Duke
Just got here for my scan. I am hanging out in the waiting room, waiting for them to draw blood.

There was a huge lineup of cars on the way into the parking garage because someone was waiting for a car to pull out so they could take the spot.

We were waiting and waiting... I finally started watching the clock and another two minutes passed. People behind me started beeping.

It was sort of funny.

You have to assume it was a patient getting into that parked car, moving awfully slowly after getting some kinda treatment. No wonder it took forever.

I always zoom to the top of the parking garage because there are lots of empty spots up there. To me, its crazy to waste time trying to squeeze into a spot on a lower level.

I rode down in the elevator with two like-minded folk. I think the woman was one of the beepers. She claimed she was about to throw her car into "park" and walk up to see what the holdup was!

Okay, I'll admit it. I beeped my horn too. Two short cheerful toots.


Sent from my Verizon Wireless Phone


Posted by Karen at 1:40 PM 2 comments:
Monday, January 9, 2012
Happy in the New Year

Hey y'all I am doing well!

I should have updated you sooner. I apologize for being lazy.

The combination of the new drugs and new PT activities has helped tremendously:


I sleep through the night, every night!
I am rarely in pain!
No more tears!
No more plans to chop off my left leg!

I haven't had to take any narcotic pain killers in like a week, which is super awesome. I am taking Lyrica, Neurontin, and Celebrex... with an occasional dose of extra strength Tylenol thrown in.

PT has been excellent, but the effects last three days. I have three sets of exercises I am supposed to do on my own at home. I am not all that compliant. One exercise, which Lou has to help with, I do like clockwork because Lou is involved. But the other two exercises, I am sort of spotty on. Probably if I did them as directed, things would improve. I MUST DO THEM!

OK, got to get back to work now.
 

 

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