Just getting to the bone marrow transplant is proving to be harder than I thought. On Monday May 23rd I had my central lines removed. It was a rather easy process, they just clip a little skin and pull the line straight out. I was amazed at how long the line was, it was close to 10 inches long. On Thursday May 26th I had new lines insert on the other side. Which I guess is a bit harder of a process. They also released me from the hospital after the operation. I had terrible neck pain this evening and had trouble sleeping. It was much better the next day. I also went home with an antibiotics regiment. This required me to insert a vial of antibiotics every morning into my lines. This scares the crap out of me since my last line was messed up.
As a whole the weekend went great I could feel my energy and motivation coming back finally.On Monday May 30th I woke up to a tight chest. It felt like my ribs were to small for my lungs. Every time I took a deep breath it hurt. It was not terribly painfully just uncomfortable. I went in on Tuesday to have some tests run. This turned into quite an ordeal. First they just wanted to run some blood cultures to see if I had any bugs in me. Then that turned into a chest X-ray. They found uncertain spots on my lungs which lead to a CT scan. The CT scan showed that I had blood clots in my lungs. These most likely came from the removal of the line. The issue with the clots (besides their size about 2 cm) was that they are infected. This is most likely the issue that is causing my chest pain. The doctors decided not to admit me and send me home with very powerful blood thinners and stay with the antibiotics I was on. They also wanted me to come in at 9am to get more tests. The next morning I was feeling better but still could feel the tightness if I took a deep breath. It was decided that I should get my scheduled pet scan done down at the massive Intermountain Medical Center south of Salt Lake. This test determines how metabolically active my cancer is. I also had another CT scan done. Which I hate. This is the test that makes you feel like you pissed your pants. At the end of all this it was about 1pm. I was ready for lunch because I had not eaten since 10pm the night before and I was starving. But my day was not over. The BMT Clinic called and wanted me to get an echo EET or TEE something like that. All I knew was that it was a test on the heart. After an unbelievable run around I
found the location I was supposed to be at around 2:30. This tested turn out to be a lot more invasive than I had thought. It was not the ultrasound type test. This was a test where the dr sticks a tube down my throat and takes pictures of my heart. This caught me of guard. The nurse let me know that I would also need a ride home. This was given to me minutes before the test was to be preformed. Luckily I was able to get a hold of Trina and she was able to come down. I don't remember much of the test itself. They gave me a drug that gave me short term memory loss. I never was put to sleep but when I came too I barely remembered any of it. My throat was not sore afterward and felt fine.
Trina took me back to the LDS hospital. Once we got there I meet with the doctors right away. They had the results of the tests already. The PET scan was not as
good as I had hoped. In fact it was worse than my last one. My left lymph node in my arm pit went from 9.5 to 12.8 in "brightness" and the lymph in my chest went from 2 to 4. The doctors said this also could be because my body is fighting an infection which makes the lymph system work more. I don't think this is the case since my lymph in under my left arm is growing like it did before.
The other tests also had some very bad news. The real issue is that I have something stuck to the inside of my heart. At the time they did not know what it was but it raised very big concerns. It could be a blood clot, bacteria, or more Hodgkin's. This now became the number one issue, even over the cancer. To make things even worse the blood cultures taken on Tuesday can up positive for something. That meant my new line was infected with a new different bug. With all these issues arising they decided to admit me to the hospital on Wednesday June 1.
I had an MRI done on Thursday June 2. Which is a terrible test. Takes about an hour inside a tiny tube with some mechanical voice telling you when to breath and not. From this test they found out that the thing in my heart is just a blood clot, not infected. Which is a big deal. If it was infected I would most likely have to have full on open heart surgery. Chest scar and everything. With the clot most likely not being infected I just have to be on blood thinners. BIG difference! The blood thinners should help shrink the blood clot which is important because it's a big clot at 2 cm. This also changes the priority back to the cancer. Though the infection in the line and in the lungs is still a big deal.
The plan is in constant motion now. I have had several infectious disease doctors, the cardiologists, a radiologist, and the BMT doctors coming by each day. Plus all the PA's that come to tell me the plan. It seems like they have every doc in the hospital working on different parts of my case. All these different minds mean lots of different plans and ideas.
They have found out what was in my line and now can attack it with a specific antibiotic. It's not a very nasty bug and can be taken care of quickly with the same drug that will work on my chest blood clots. Also my chest issue has gone away.
The new bad news leads to a more likelihood that I will have to do a double BMT(not the sandwich). This means I will have the main BMT of 4 weeks or so then some time off to let me body recover, probably about 2-4 weeks. Then come back for another BMT and radiation at the same period. This may make my return to Moab sometime around August now, which is terribly sad. It would also exte
nd my recovery time which means that I might have my first year without a river trip since I was 4 years old. This will sound like a movie but studies show that a double BMT raises full long term remission from about 30% to 55%. Of course there could be other issues from so much chemo in ones body.
I am really, really happy to have Medicaid now also. Because this obviously will double the costs plus all these extra hospital stays can't be cheap. The fundraising was amazing but asking for $200,000 might be a little bit much.
I did have a very fun night on Thursday with several friends coming over to watch the NBA finals. I have a very nice room, even better then last time with more room and a great view of the mountains. (I felt like I had to put in a happy paragraph.)
Overall I'm feeling very good physically. Emotionally I'm much better today, (even with that ass whooping Spain put on the USA in soccer) compared to Wednesday evening. There for a little bit I was wondering if I would ever get some sort of good news. I mean open heart surgery just to GET to the bone marrow transplant. At this point I'm really not worried about what the BMT will be like I just want to get to the process because then I know I'm moving forward.
I was released on Monday from the hospital. I'm feeling great and was able to get my first "exercise" in months by playing some disc golf in Salt Lake on Tuesday.
My timeline (always the issue) is a little more concrete. I'm doing another round of chemo on Thursday, June 7th. This will be outpatient. The chemo is different than the others that I have taken so far. I can't remember the names but one sounded like Jim blah blah oside. The plan is to do the chemo and take a PET scan as soon as my white blood cell counts recover. The idea being to knock down the cancer and then collect my stem cells right away.
SO I should be collecting stem cells in two weeks or so. I think I have written that three or four times now. I feel good about this one being the really one. Thanks for all the emails. I hope to get too respond tomorrow or so.