Not too bad

Happy 4th of July! I am wearing my 4th of July PJ pants in honor of the occasion. We saw a little of one fireworks display out our window tonight, but it was pretty far away. We heard all the noise from another display over by the downtown (about 3 miles away from the hospital), but there were too many other tall buildings in the way to be able to see it. My boys are seeing the fireworks at the Rose Bowl probably as I type, and that's the biggest joy of fireworks for me, anyway-- having my boys experience the wonder of it all. I told them to remember what their favorite kind was so they can tell me all about it tomorrow.

Here on the transplant floor we had hotdogs, chips, and punch for lunch (I got to wander out of my room for a little while with my attractive mask on), and later on there was a "pole parade" (all the patients parading around with their IV poles) and ice cream. I didn't participate in the pole parade since that was in the middle of my really bad headache, but it was kind of a sweet thing for the nurses to mark the occasion for the patients. I imagine the days will really start to blend in with one another pretty soon here.

The doctor doing rounds today was Dr. Champlain, whom I know of from a book I read. The book is called "11th Hour Miracles"), and is written by this LDS woman about her experience undergoing an allogenic bone marrow transplant back in the late 80's, when the procedure was still new and very risky. Dr. Champlain was her doctor at UCLA, and is now at MD Anderson. It was interesting meeting him after reading all about him in the book. The author really respected him as a brilliant doctor, but didn't have a ton of good things to say about his bedside manner. :-) He was nice to me, though, in the 2 minutes he was in my room listening to heart and lungs and asking the routine questions.
My first day of chemo wasn't too bad. I did get the headaches and fast heartbeat, but it was pretty tolerable. Darvon did the trick for the headaches, and the fast heartbeat only lasted a few hours after the infusion ended. Do you think I burn extra calories with a fast heartbeat? Does doing chemo count as aerobic exercise? LOL!! My heartrate only go up to about 115-120 bpm, so... probably not. I got pretty tired, which was fine, because I was able to sleep through the headache and Darvon yuckiness. I'm not sure about the brain shrinkage. Some people (like probably my entire family!) might say that I'd be better off with my head not quite so big! LOL! I do know brain volume change is one factor being tracked in this study-- the MRI's I have had and will have will measure any changes in volume. Seriously, I've always had a really big head (try finding hats to fit!), so maybe I've got some extra brains to spare? :-)

The worst thing so far has been all the fluids they're pumping into me. I understand the reasoning, since the chemo drugs can cause kidney damage, and so keeping the kidneys moving is a good thing. But still, it is a little ridiculous. I woke up this morning 5 lbs heavier than yesterday!!!!! But then today I was in the bathroom just about every 20-30 minutes, so maybe some of that has come off. But still, I would FAR rather be visiting the bathroom every 20 minutes for that purpose rather than because I'm vomiting every 20 minutes, so I can't really complain.

Early tomorrow morning I start Etoposide and Cytarabine, and I'll do 3-6 hour infusions (depending on how I tolerate it) every 12 hours for the next 3 days. Here's my info on those drugs:

Etoposide may cause nausea, vomiting, low blood pressure, hair loss, and/or fever. It may cause diarrhea, stomach cramps, muscle cramps, constipation, blood in the urine or stools, and/or difficulty swallowing. It may cause infertility, flushing, swelling of the face, and/or rapid heart rate. It may also increase the risk of developing leukemia. It may cause liver damage, mouth sores, swelling and irritation of small veins at the side where the drug is given, and/or local skin irritation if drug escapes. It may cause swelling of the lining of the stomach, skin tenderness, itching, severe allergic reaction. Etoposide may cause loss of apetite, tiredness, weakness, cough or hoarseness, and/or chills. it may cause lower back or side pain, painful or difficult urination, itchy skin rash, temporary changes in the way food tastes; unusual bleeding or bruising; and/or difficulty walking. It may cause numbness or tingling in fingers and toes, low blood pressure, fast heartbeat, loss of consciousness, and/or sweating.

Ara-C (Cytarabine) may cause nausea, vomiting, fever, chills, coughing, and/or mouth sores. It may cause diarrhea, inflammation of the colon, and/or loss of appetite. It may cause shortness of breath, pneumonia, liver damage, chest pain, fatigue, weakness, and/or urine retention. It may cause a skin rash, bone pain, eye irritation, and/or flu-like symptoms. It may cause redness, burning, and/or pain in the palms/soles. it may cause painful hand-foot syndrome. It may damage vital organs such as the heart, kidneys, liver, lungs, and/or brain. Side effects involving the brain, including dizziness, difficulty walking and standing, confusion, sleepiness, and/or coma may occur.

Since I only experienced like 3 out of 15 listed side effects with Carmustine, I bet these two drugs won't be too awful either. I'll let you know tomorrow! Off to sleep now. Any bets as to how many times I'll be up to visit the bathroom? :-)