There are things one hears when going through a Bone Marrow Transplant, and one of the lines is “well, this is the new normal.” What does that mean? The new normal? Well, I suppose I am finding out…and I don’t know if I like it.
Astrid walking at Berkeley Marina 4/13/2012
I really struggled with the decision to have the BMT, unsure whether the side effects, risks of Graft vs. Host Disease (GVHD), and other impaired abilities would be worth it…and I have to be honest that I still don’t know if I made the right decision. I really wish I had time to sit back, think about my decision, and be able to move forward with that choice. But as it stood, with the onset of the Leukemia, and the hemorrhaging, I had but seconds to think, and did what most human beings would have done, I said “Save my life!!” But during that time I struggled with making the decision, doing the only thing I could do to save my life, having a transplant. I didn’t have other options, like many other Leukemia patients, because of the way this disease was made up in me, and all the other deciding factors, I would be dead within weeks, if I didn’t have a BMT. Chemotherapy was just keeping me alive, like a breathing tube, but it was never going to be the cure, only having a BMT was going to have any chance of eradicating my Leukemia for good.
So, with a somewhat heavy heart, and a good level of fear of the unknown, I moved forward with the BMT on January 18th, 2012 at 3:45pm. That is considered my “re-birthday”, as I was basically brought to the level of death and reborn at that time. See, the preparatory chemotherapy for the BMT is so bad, that it kills your stem cells, which each living animal needs to produce their blood, and in my case, I was brought to depth of physical death, only to be revived with the transfer of my donors stem cells into my bloodstream. So as my body was dying, I was injected with the cells of a foreign donor and hoped my body would be able to accept these cells. There is medical help, in the form of immunosuppressants and the “anti-everything” drugs I was given. They suppress my body’s natural desire to fight the invader and allow the grafting process to take place. So during the weeks I was in the hospital after the transplant, there was a lot of waiting for my “numbers”, or basically all my blood levels to start to rise again, waiting for my mucositis (mouth and GI tract sores and blisters) to decrease, and waiting for me to have the ability to keep food, pills and everything else down. It took about 4 weeks, from admittance to somewhat healing to come home, and that’s where the real work began.
Coming home was great! It was so good to be able to be in my own bed, and to be able to be with Anthony and just be out of the hospital setting. But that’s where the fun stopped, and the real picture of what life would be like for a long time, set in. Now my healing process is monitored by how many days have elapsed post-transplant, meaning my “age” is now how many days have elapsed since the transplant. As of this writing, I am “day +91″ post transplant. The big milestone is “day 100″, and if you make it (meaning have no relapse, don’t end up back in the hospital with infection or GVHD, or other issues), then doctors can start to wean you off your immunosuppressant drugs. Well, they actually started early with me, at day 60 or so, because my red blood cells and T-cells are not grafting, and they are worried that there is a deeper issue going on. So, my doctor has started to take me off the immunosuppressant drugs early, waiting to see what my body will do. THANK THE GODS!! because the side effects of the immunosuppressants are so bad that basically I feel like there is acid being poured onto my skin, with a 3rd degree sunburn, with a heart rate over 100, all the time. I don’t sleep, there is a constant level of anxiety from the drug, and a whole host of other issues. Sometimes my body flares and the itching is akin to having poison oak/ivy all over your body, in every crack possible. YAY! FUN!! The new normal!!! So, having the doctor wean me off the drug has been at least a step, but I’m still not off, and the side-effects are still there. Did I mention the 10-15 pounds of water retention? So, at this point, I feel like I am existing, not living, and I don’t want this to be “the new normal.” I never want what is happening now to be normal.
I am told it gets better, that life starts to happen again around 6 months post-transplant, and that it takes a year to feel like yourself again. Well, I am 3 months out, and each day two centimeters forward, and a centimeter back. Some days I feel like “yep! I will get better and start traveling soon” and others? all I can do is lay in bed and feel the burning and the pain, and wish I was dead, because this is so unbearable. You know, before I had the transplant, I had a doctor tell me that his friend had a transplant, and at many times he wanted to kill himself because the pain and discomfort was so unbearable. In hindsight, he was happy later on that he had done it. I understand. I now know what that person felt like.
There is nothing inside of me that, when I was healthy, could have imagined what going through chemotherapy was like. Then, when I went through rounds of chemotherapy, I couldn’t fathom what going through a BMT was like. Now that I have gone through chemotherapy and a BMT, I can not fathom how I have done all that. I am one of many who have and are doing it, and everyone has a story to tell, and I hope they do. As I said, at this point, I don’t know if I made the right decision. Because right now, I exist, I don’t live. I need to live, otherwise, what’s the point? All I can do is trust that what I am told is true, “it will get better”, but all I can do is trust.
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