Today I wanted to use this forum to give everyone an update. I am sorry that I didn't email everyone but this is much easier than emailing and it ensures that I don't forget any information when relaying the information.
Yesterday Amy, my mom and I travelled to PMH to meet with the transplant team. I went in with the hope of coming out of there with some definite timing but came out of there with still no idea on that front. That was more my mistake in that I didn't know the process properly.
The first meeting is more of a meet and greet where you meet the nursing coordinator and transplant doctor. The true purpose of the meeting is they have to go over all the potential risks and complications with the procedure and get your definite consent to move forward. Let me tell you, there are a lot of risks and complications with this procedure. I knew from researching that there was a lot of them but when hearing them from the doctor they sounded so much scarier. Plus it sounded like the list was never going to stop :) The risks are anywhere from graft versus host or rejection, to developing another form of cancer, having a relapse in my disease, a serious infection, right up to death. I have to say that I didn't expect to be bothered by hearing the complications as much as I was. They were much scarier hearing them than I ever expected. The whole time I had to keep reminding myself that Al went through the same procedure and he is living a normal life. It also got me thinking back to my first diagnosis and if when they told me the risks and complications then if they were as scary. That whole time is a blur so I don't really remember it but most of the risks and complications are the same as that time around so I continually was reminding myself that they have to tell me all the worst case scenarios so that I can make an informed decision but that I made it through the first go around fairly unscathed. Regardless of the risks, I have made the definite decision to proceed forward with the transplant.
Now they begin the contact with the donor. There is still a chance that the procedure will not happen in the next couple months because of the donor. This is the first time the donor has been contacted they tell me so the donor can still back out of the procedure if they want. Also the donor has to pass a physical that says the transplant will not be a danger to their health or mine. If the donor agrees to do the transplant and is capable they will agree to a date and then the ball will get rolling. The date of the transplant is all based on the donor. I am figuring it won't be until the new year but the still is a chance that they could call me in the next two weeks and tell me the transplant is happening in one of the first three weeks of December. We got some great news on the donor front yesterday. They have actually found two donor matches for me! I feel blessed to have two because it means I have a backup if the first donor doesn't want to or can't do the donation. It makes me feel very lucky because many people can't find one donor.
Once the donor has set the date of the transplant everything gets moving. Before the transplant I have a tonne of tests that have to be performed. I have to get my bone marrow checked again. This means both an aspiration and biopsy done. I am really not looking forward to this as it hurts and is extremely uncomfortable. I had made my peace with the aspiration but the biopsy was a curveball I wasn't expecting. For the biopsy they actually break a chunk of your bone marrow out of your hip bone. I am looking forward to it less because it takes longer to heal and feel normal afterwards. The other tests are another LP to check my spine for no leukemia, a trip to the cancer dentist to make sure I have no work that needs done, my heart needs to be checked to ensure it can handle some of the chemotherapy agents, and they check to make sure my liver and kidneys are functioning properly. Once all the tests are done I will be admitted to the hospital 7 days before stem cells are transplanted into me. In this 7 days I will undergo the intensive chemotherapy and 6 full body radiation treatments. After that it is a waiting game for the stem cells to take hold in my system and start producing blood cells and immune cells for me. Once they are producing the cells and I can take all my medication orally I will be discharged. There is a fairly long recovery after the procedure but it is more dependent on the complications. The less complications I get, the faster the recovery.
On to the complications. The big thing risk with this procedure is graft versus host disease. It is with almost 100% certainty I will get this complication. This complication has many severities from mild to severe. The coles notes version is after the cells are transplanted into the system the donors immune cells see my body as foreign objects and begin attacking them. The severe types are when they begin attacking my organs. I will be on a lot of immune suppressant drugs to give my body and new cells times to make friends and coexist. The other risk is the chemo and radiation could damage my DNA in such a way that I develop another form of cancer. Also since I will be taken down into a neutropenic state (I have no immune system) I am very susceptible to infection. These infections can be very severe as you have nothing to fight them off with. When you here of people passing away from leukemia it is often from a severe infection.
All in all it is a scary process but one that I am mentally prepared for. I made it through the first go around fairly unscathed and I intend to attack this round with the same attitude as the first time. I will update you all when I know more on timing. Also on a side note many people have had trouble posting comments on this site, so I will be doing a comment posting tutorial post this weekend so look for that.
Have a great weekend,
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