Thursday, November 26, 2009

Happy Thanksgiving

I have a lot to be thankful for!

My awesome husband

My happy marriage

The comfort I receive from prayer

My excellent job

My "Cadillac" health insurance

My brilliant and fun coworkers

My wonderful parents

Duke's Bone and Soft Tissue Sarcoma Center

Significant shrinkage in all eight tumors

Evidence that I am getting the clinical trial drug

CyberKnife radiation surgery

Avante physical therapy

All my friends

My bossy Golden Retriever Sam

Memories of Molly, Spike, and Winnie

Doane's guardian angels

Long term disability insurance

Life insurance

Foyle's War, 2 new episodes just arrived from Netflix

That I have not breathed a word to my best friend that my cancer is back because I cannot burden her with worry about me because she is struggling with her husband's cancer. I've had the honor of supporting & encouraging her, the way you all support & encourage me.

Tuesday, November 24, 2009

Port Nurses

Woo hoo! My hemoglobin has been hovering in the nines for months, and yesterday it was eleven. No wonder I have been feeling so good! Twelve is the low end of the normal range, so you could say I am almost normal now ;^)

Duke Clinic 1C was jam packed yesterday, probably because of the holiday week. All those Thursday and Friday patients have to be seen at some point, Monday through Wednesday. I sat around for 50 minutes waiting to have my blood drawn. Yikes. Sure, I was reading an Agatha Christie paperback, printed in 1971, that I bought at the Wake County library sale for a buck. The title is something about chimneys. You have to be gentle when you're reading a paperback that is 38 years old.

Turns out that the nurses who draw blood through ports were really backed up -- but the nurses who draw blood by sticking a needle in your arm were less backed up. Lesson learned: in the future, I will tell the desk clerk when I check in that I will take the first available nurse, that it does not have to be a port nurse.

Ooooh, maybe I shouldn't call them port nurses. Makes them sound like they are in the Navy.

Anyway, all is well. I am continuing in the clinical trial.

Etiquette question: Yesterday in the clinic waiting room, I saw someone that I work with. This person seemed to be accompanying a parent. I did not go over to say hello. I was not sure if it would be appropriate or intrusive. Plus to be honest even though I say hello to this person every day in the hallway at work, I do not know their name. Hard to say hello when you do not have a name. Plus, I always wear my wig at work and always wear my baseball cap at the clinic. What if I was not recognizable? That would have been extra awkward.

Saturday, November 21, 2009

Searching for Side Effects

On Friday I was talking to a friend at work about how if you pay too much attention to a list of side effects, maybe you start to manufacture some of those side effects...

I admit that I have been looking for side effects this week, hoping to determine whether I am actually getting the study drug, but at the same time I have been reveling in how awesome and energetic I feel. It has been a wonderful week!

Well, on Friday, I did not feel all that great. I had some exhaustion at midday (a giant cup of coffee helped) and a dry mouth. The dry mouth stuck with me all day, but is gone this morning. It was not so bad that I had to use the magic mouthwash, but I did need to chew Trident all day. The exhaustion was back at the end of the day. How do I know it wasn't just normal end-of-a-long-week exhaustion? We were on our way to Genki for a fabulous sushi dinner when I decided I was too tired (!!) and so we picked up Chinese takeout and headed home to watch the "new" Star Trek movie (which had just arrived via Netflix).

Then on Saturday I had real chemo exhaustion and had to go to sleep for two hours in the afternoon.

So... what do you think? Maybe I am getting the real trial drug and not the sugar pills!

[I'm going to stop obsessing about this now.]

Thursday, November 19, 2009

Powerful Flashlight

If I take this really powerful flashlight and shine the light across my scalp and then lean in really close to the bathroom mirror, I can see some peach fuzz!

Goodness gracious, I am feeling impatient to see some hair growth. I got my last chemo on October 22 -- that is virtually a month ago. I think in 2007 my hair came back faster than this. (Does anyone remember?)

I have completed four days of the clinical trial. I haven't noticed any side effects -- and believe me I have been looking for them because I want to know if I am getting the drug and not the sugar pills.

The study drug comes in a Z-fold card that contains an entire week's worth of pills. The pills need to be refrigerated, and they need to be taken two hours after I eat breakfast. Two hours after breakfast, I am in the office. So I have been lugging this Z-fold card back and forth to work each day in an insulated bag with an ice pack.

If these are fricking sugar pills, then they are the most pampered sugar pills on the planet.

Tuesday, November 17, 2009

Two Trips to Duke on Monday

I started the clinical trial! No way to know if I am actually getting the drug.

It is sort of complicated because the pills have to be refrigerated and taken precisely 2 hours after a small meal.

I spent the morning at Duke! Traffic on 147 made me 25 minutes late (until I hit 147, I was going to be early for once).

I had blood drawn, had an EKG, peed in a cup, answered a million questions about how I feel, saw Dr Reidel, received my drugs in a sack with an ice pack to keep them cold, and then finally headed to the office.

At the office, I got some AWESOME new info from someone; totally cleared up my confusion on a difficult topic.

Then about ten minutes before I was scheduled to take my first dose of the study drug, the nurse called me. She was frantic to make sure I had not taken the drug yet. My heart sank. Had they determined some reason to keep me out of the clinical trial?! But no. They had not taken enough blood, and they absolutely needed to do that before I took my first dose. If I would come back, they would pay for my parking.

I headed back to Duke. It took awhile for them to slip me in between other patients, but they finally drew two more vials of blood. The nurse ordered me to go have a light snack so that I could take my first dose in two hours. The Seattle's Best coffee shop in the Duke Clinic cafeteria had a lovely pumpkin loaf for my light snack.

As I left, I felt completely exhausted, exactly how I felt last week after they took six vials of blood. I drove home and crawled into bed and slept for over a hour. After my nap, I felt fine.

Sunday, November 15, 2009

Clinical Trial Starts Monday

Tomorrow morning, I go to Duke to start the clinical trial for AP23573.

They are supposed to run a bunch of tests (bloodwork, EKG, etc), give me the first dose, and then watch me for one hour to make sure I don't keel over with some kind of adverse reaction.

This is a randomized double-blind study, so nobody is supposed to know if I am getting the drug or the sugar pill. I've been praying to get the drug. I even asked my friend Doane to send a couple of her guardian angels to intervene on my behalf when the coin gets flipped.

I have one task left to do before Monday morning. I need to update the list of medications that I currently take, and I have to add approximately when I started taking each one. Jeepers. Who knows that kind of info? I mean, I can hardly remember what I had for breakfast this morning.

Thursday, November 12, 2009

Physical Therapy Working Wonders

My physical therapy for my bulging disc has been going great. The pain has been reduced by a ridiculous and wonderful 85% after just three visits.

It turns out, my psoas muscle was really tight and causing most of the trouble. That was the reason I couldn't even stand up straight. Well, after everything that poor psoas muscle has gone through, no wonder it was tight and achy. We bombarded it with radiation and chemo! Then the tumor shrank significantly -- does that leave a gaping hole in the muscle or what?

Anyway, I have been working on stretching it out. The first PT appointment was actually terribly painful as the therapist dug into the muscle mercilessly. I had to go home, take a pain pill, and go to sleep. But the results have been fantatsic. I can now stand up straight. Even more importantly, I can sleep again! And walk!

The nerve pain from the bulging disc is almost all gone too. I guess now that the psoas is not pulling everything out of alignment, maybe the bulging disc is not pushing up against the nerve root any more.

Life is good!

Monday, November 9, 2009

Chemo Pity at the Flu Clinic

The Wake County H1N1 flu clinic in Fuquay-Varina was scheduled to open at 9:00AM. I pulled up at 8:15AM and there was already a long line of people. I parked on the street and jumped into the line as quickly as I could. I seemed to be the only adult there without children. The kids were running around playing, and the parents were mostly chatting. I was standing with some very nice people, which is good, because we were together for almost two hours.

It was sunny and beautiful, and I ended up bringing my winter coat back to my car because I did not need it.

I had deliberatly worn a baseball cap instead of my wig, because I wanted it to be obvious that I was really in the high risk category. (Who in their right mind would shave her head just to bluff her way into an early flu shot?) In addition, I had brought along my asthma inhaler with official prescription sticker, in case I needed to further convince them to give me the shot. I am a ridiculous worrier.

For an hour and ten minutes, the line did not move at all. After that, we made slow but steady progress toward the building. We could not see the door from where we were, and I was reminded of being in line outside the Vatican Museum in Rome, thinking that when we finally got around the corner, we would be near the door -- only to find that when we got around the corner, the door was still nowhere in sight.

After about an hour and forty minutes, we had come within sight of the door; at that point, I guess-timated that it would take at least another forty five minutes till I was actually getting the shot. A nurse was working her way down the line, explaining the difference between the mist (live virus for healthy people) and the shot (dead virus for high risk people).

One of the moms said she was surprised that her five-year-old daughter had begged for the shot instead of the mist; she just could not deal with the idea of having something squirted up her nose. (That led to a funny conversation about dogs getting the kennel cough vaccine squirted up their noses, and what is the chance they are really giving kennel cough vaccines in there?) I said that I had to get the shot.

The nurse took a look at me with my bald head (not really hidden by my baseball cap) and asked if I was getting chemo. She suggested that I make sure that I did not end up getting my shot right next to someone who was getting the mist, because the mist could easily disperse in my direction and make me sick. She said that I ought to wear a mask just to be safe and she went back into the building to get me one.

Ten minutes later, the nurse came back with a mask for me, but she said that they had decided to pull me out of the line and give me the shot right away! They didn't think it was a good idea for me to be in line for so long or to be anywhere near the mist. Also, there were apparently a lot of people who showed up sick and germy, and they didn't want me exposed. (Don't worry, the people closest to me all seemed very healthy.)

This was awesome! Chemo pity at its best!

I said goodbye to my new pals, put on the mask, and slipped in a side door. From what I could see, it was pretty crowded in there. I was handed over to another nurse who led me away to the quiet side of the building, gave me the shot, and then brought me out the back door so I didn't even have to walk past the long line on my way back to my car.

Gosh, this was just an excellent experience!

I'll tell you, I have been pretty worried about the swine flu and the availability of the vaccine. I figure that with my asthma and the chemo, I was really high risk.

So one more time, let's do the happy dance!

Sunday, November 8, 2009

Exhausted on Saturday

I was fine when I woke up on Saturday morning around 9:00AM. Amazingly, my back pain has been greatly reduced by that first visit to physical therapy and by doing the exercises that she gave me.

Lou and I had big plans for Saturday: a trip to Costco, followed by sushi lunch at a new restaurant called Japan Inn on Falls of Neuse Road.

On the drive to Costco, it became clear that I wasn't feeling so good. I started arguing with our GPS system, doing U turns, and re-selecting Costco as our destination because I was certain that I had accidently chosen some other destination. It was the chemo exhaustion side effect! It's a ridiculous exhaustion that makes me very difficult to deal with. This was completely unexpected because I got my last chemo two and a half weeks ago and I've been feeling better and better every day for the last week.

We made it to Costco safely, but shopping was difficult. We were trying to buy my Christmas present, which was supposed to be either a laptop or a desktop computer to replace the one in my home office. It took forever to narrow it down to a choice between one particular laptop and one recently marked down fascinating desktop computer with a touch-screen monitor and no tower because all the computer's guts are built into the back of the monitor.

Somehow we got through Costco, got through lunch, and I went straight to bed when we got home.

When I woke up, I was a new woman. With a new laptop! But I won't see it again till Christmas.

Thursday, November 5, 2009

Bananas in the Filing Cabinet

The bananas in my filing cabinet really struck a chord with a lot of you.

When I finally made it into the office on Tuesday morning, you'd have thought the bananas would be uppermost in my mind. But I got distracted getting a cup of coffee and checking email. I think Meredyth IM'ed me asking about the bananas, and that is when I pulled open the filing cabinet drawer.

A strong yet pleasant banana aroma wafted out at me. The two bananas were covered in brown spots, but the skin was intact. There was no leakage. There were no fruit flies.

The bananas were soft but not disgustingly so. In fact, they would have been perfect for banana bread.

I left them on the counter in the break room. People at work will eat anything. Maybe there is someone who loves a really ripe banana, someone who only buys the clearance bananas at the grocery store.

Later I noticed that the bananas were gone.

Tuesday, November 3, 2009

No More Chemo!

Yesterday, the decision was easy to make: No More Chemo!  Instead, I will start the clinical trial in two weeks.

My October 30 scan results show the following:

  • no new tumors have appeared
  • the little lung nodules all stayed the same size
  • the tumor in the psoas shrank by another teeny bit
  • the tumor in the pancreas shrank by another 20%

Overall, this entire four-month course of chemotherapy was highly successful! All of the tumors shrank significantly since the chemo started.

The best part is that I am done chemo. Doing the happy dance!

I should probably clarify that I am done chemo for now. The plan is to monitor my insides closely, and if a new tumor appears or if there is significant growth of the old tumors, then we would use chemo like a baseball bat to beat the cancer senseless again.

This clinical trial is pretty interesting.  It will test the effectiveness of a drug (AP23573) that might help keep the cancer from starting to grow again. Presumably, the longer you can keep the cancer from starting to grow again, the longer you live... the longer you live, the better treatments are available...  and the better treatments are available, the longer you live. (I'm feeling dizzy again. How about you?)

It is a double-blind, randomized clinical trial, so no one will know if I am getting the drug or not. I am going to have to say, "The drug that I might be taking..." but that is cool.

Yesterday we started the ball rolling for the clinical trial.  I signed a bunch of paperwork, and then they took a ton of blood for the baseline labwork. Maybe that is why I completely CRASHED when I got home and slept for two hours.  But after that, I felt fabulous and logged on to work for two hours.

I am very excited to be going in to the office this morning, and not just because I put a banana in my filing cabinet last Monday and have not been back since.

Sunday, November 1, 2009

Rainy Sleepy Sunday

Today looks like it will be a cold, rainy day, perfect for hanging around the house doing nothing in my PJs. The high today will be 58 degrees.

Lou and I are watching the X Men Wolverine movie. (We took a break from the movie so I could update my Halloween posting about the little pirate who ran screaming off our porch.)

Today, nothing much needs to happen. I need to read the clinical trial consent form one more time, and Lou needs to watch a little football.

My oncologist is a Phillies fan, so I might watch highlights from the World Series Game Four tonight so I have some baseball banter for our appointment tomorrow.

Emotionally, I am definitely feeling a lot better than yesterday. I guess I just needed to vent. Plus, I feel so much better. I have some energy again! No more twitching and shaking!


Friday 11-27-09: Happy turkey leftover day ;^) Slept great, feel great, and had a turkey sandwich for breakfast.

Thursday 11-26-09: Happy Thanksgiving! Slept great, fee great, and already baked a pumpkin pie this morning.

Tuesday 11-24-09: Woke up feeling pretty good! I have been sleeping through the night, which is really fabulous but which might not sound so exciting unless you have spent nights waking up over and over.

Monday 11-23-09: I am headed to Duke this morning to get lab tests to see how I am doing on the clinical trial. Had a lot of muscle aches yesterday, so last night we sat in the hot tub with cold raindrops falling on our heads. It was lovely!

Sunday 11-22-09: I am feeling much better today!

Saturday 11-21-09 UPDATE: Total chemo exhaustion around 2PM! Had to crawl into bed and zonk out for 2 hours. Jeepers. I am torn between being THRILLED that I am getting the study drug and BUMMED that I do not feel well. Isn't that just human nature?

Saturday 11-21-09: Lou is off to the gun show, so I am on my own this morning. Sam wants to go for a walk, but it's only 45 degrees out... Slept great. Feel like I am fighting off a cold, so I took some C and some airborne.

Thursday 11-19-09 Night Update: Great dentist appointment today; no cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I have been scurrying around the house tidying up and getting things ready for the house cleaners, who come tomorrow morning. (I am such a lucky woman!) Can you belive how good I am feeling? It is a miracle.

Thursday 11-19-09 Night Update: Great dentist appointment today; no cavities. Worked a full day and accomplished a lot. It's almost 11PM, and I have been scurrying around the house tidying up and getting things ready for the house cleaners, who come tomorrow morning. (I am such a lucky woman!) Can you belive how good I am feeling? It is a miracle.

Thursday 11-19-09: Woke up early for a dentist appointment. Feeling pretty good. Baldness and numb feet seem to be my only complaints. Going to be a long day!

Wednesday 11-18-09: Did NOT sleep well, but I feel good this morning. I certainly did my stretches yesterday and went for a walk.

Tuesday 11-17-09: I did my stretches this morning!

Monday 11-16-09: I have been feeling so good, I slacked off my stretching and woke up this morning in pain again. Nothing like pain to motivate me to do what needs to be done.

Sunday 11-15-09: Happy to report that I am finally sleeping through the night again. No more waking up four times a night in pain! Yahoo.

Friday 11-13-09: Going to see the Steve Miller Band tonight! Feeling good. Slept LATE which felt great after two mornings waking up early. Last night I was exhausted after a long day (10 hours at work).

Thursday 11-12-09: I am feeling pretty darned good! I have not had to nap for the last couple of days. I have only experienced a little exhaustion. Of course, my feet are still numb, and I still have no hair, but who can complain ;^)

Monday 11-09-09: Big day today. Going to try to get an H1N1 flu shot and have another physical therapy appointment for my back. I think that I might feel stubble on top of my head! Is my hair starting to grow back? Feeling okay this morning. Tired.

Sunday 11-08-09: Feeling pretty good this morning. Heard on the news about H1N1 flu shot clinics in Wake County tomorrow morning. I really really want to get a n H1N1 flu shot ASAP! I wonder how early I ought to show up to get in line...

Friday 11-06-09 (Evening) Today was the first day I did not have to take a nap! I did yawn a lot in the van on the way home. If I could have reclined my seat, I could have fallen asleep. This has been a great week. Every day, I have felt a little better. Lou and I just came in from the hot tub. I'm all relaxed and my back does not hurt.

Thursday 11-05-09 Afternoon Update Physical therapy was painful but awesome. It is clear that my psoas muscle is very tight and irritated and causing about half of what I thought was bulging disc pain. Afterward, I was completely wiped out and dragged home and went to sleep. I just woke up, had a cuppa, and am about to log on to work. Feeling pretty good now.

Thursday 11-05-09: Today I have my first physical therapy appointment for my bulging disc. I feel happy and energetic. My right foot is less numb than my left foot. This morning I experienced the Unspeakable Side Effect but now I feel fine.

Wednesday 11-04-09: Woke up at 5:30AM so I can ride in my fantastic Triangle Transit Authority vanpool today. My ribs ache less this morning. My energy crashed again yesterday afternoon and I had to nap. So even though I feel a lot better, I still can't get through the day without a nap.

Tuesday 11-03-09: All my side effects will eventually disappear, but today I woke up with numb feet, rib pain, and baldness ;^) Looking forward to talking to my primary care physician this afternoon about the bulging disc.

Monday 11-02-09: BEEP BEEP BEEP alarm clock woke me up at 6:30AM because we have to be at Duke by 9:00AM. Woke up with all the usual complaints, none too terrible. Looking forward to talking to the doctor this morning.

Sunday 11-01-09: Welcome to November! Don't forget to turn back your clocks. I have only been up for 30 minutes, but I am feeling better today. Hands are not shaking.