Tuesday July 21st: Today was a rather eventful day. As I said before, today the oncologist (cancer doctor) was going to come in with a plan. First off, I had a horrible night! The pain in my back kept me up most of the night and the TENS unit didn't really help - it just became irritating. Heat packs helped for a while, but I just am not comfortable in a laying down position, which I am craving so I can go to sleep. It's really hard to sleep when you're sitting up no matter how many pillows are supporting your head. So I'm taking a valium tonight to help me sleep better. Anyway, we officially woke up for the day around seven and had breakfast. Then I took a wonderful shower in boiling hot water that felt SO GOOD on my back! So that helped me feel a ton better. The pain doctors stopped my continuous dose of painkiller (that I believe I am now resistant to) which is one more step to getting home! A massage therapist came by around 10:30 and gave me a full body massage: head, neck, back (of course), legs, and arms. It felt SO good and put me to sleep. The IV team came and re-accessed my port after a late lunch. The ports are special because they are a prime target for infection, so the dressing has to be changed often, the caps on the tubing has to be changed every three days, and the actual needle has to be changed every week. Which stinks for me, but it wasn't too painful.
Then the oncologist, Dr. Weinstein, came in with her plan. The biopsy showed the PTLD which was also EBV positive and is a type of B-cell lymphoma called plasmablastic lymphoma. I have no idea what that means except that it is extremely agressive and can spread quickly - especially to the spinal fluid which would not be good. Surgery wouldn't help because lymph nodes really shouldn't be removed and they are tissue that has something that makes them difficult to remove. So no surgery. We've decreased my immunosuppression medication (the meds that help keep my body from rejecting the heart) to try and help with treating the cancer.
So here's the plan: we start chemo tomorrow. Dr. Weinstein is going to do a spinal tap and bone marrow biopsy on me in the morning as well as inject some chemo drugs into my spinal fluid. This will all happen while I'm under very heavy sedation. Then the first drugs will begin. She will be giving us a schedule tomorrow of the drugs I'm supposed to get and when, so I'm not exactly sure what I'll be getting tomorrow. I'll let you know. The medications being used in this "recipe" (for those of you who are interested in the technical medical info) are: prednisone (at a very high dose), cyclophosphomide, adriamycin, vinchristine, rituxmab (possibly), methotrexate, and I think there's one other that I didn't write down. The cycle of meds begins tomorrow and will last for 4-5 days. Each med is different: some are continuous drips, some are pills, some are quick infusions. After that first cycle, there's a rest period of 2 to 3 weeks which is when side effects, such as losing hair, will begin to show. The oncologist wants a scan two weeks after the cycle has been finished to see how the cancer is responding. She doesn't expect it to be fully gone, but she is very optimistic that it will have decreased since she is using a rather heavy dose of this chemo "recipe." The cycles have to be completed in the hospital, so I would be inpatient for 4 to 5 days with each cycle that happens. Hopefully we'll only need 2 or 3. Dr. Weinstein says that the drugs she's using are much less intense - when it comes to side effects - than the ones I was given last time with chemo, but it's hard for me to imagine that. Hopefully I won't be too nauseous and can just be knocked out of it the whole time by painkillers and anti-nausea meds. :-) The good thing about these drugs is that some of them are actually used in treating rejection, so the transplant team isn't terribly worried about my heart. The drugs basically dissolve or melt the cancer and then it exits the body through the kidneys and out as human excretement. That's the plan to get rid of the cancer and we're praying it will work.
On the happier side of the day, after that I was pretty much in pain for a while. After crying for a while, I took a nap again and Mom and I took a walk and played some Racko. We both have been working on some brain puzzles that Rachel so generously is letting us use (thanks Rach!). Dad's actually working on one right now and it's kind of funny to watch him think so hard at 10:30 at night. :) Dad came with Nathan to switch out Mom, and six of the young men in my ward came to visit along with the YM president. They brought some treats and visited for a while. It was very cheering to see some familiar faces from the normal world that I am currently not a part of. Once they left, Mom, Dad, Nathan, and I hung out for a bit and took a family walk, then Mom and Nathan left. I got unhooked from my IV painkiller for a while to see how I do (just until midnight) so Dad and I took a long walk to look at the skyline and explore the floor while I didn't have to push an IV pole around. So that's been today! Hopefully I'll sleep long and peacefully without pain tonight! Thank you for your prayers and fasting for me - they have been keeping me strong and positive throughout this experience. I love you all!