I came across that quote recently and realized there couldn't be a better way to describe what has happened in the last few days here, especially yesterday, January 6th, 2012 aka Transplant Day. They consider that day a second birthday for survivors, so when the infusion of the donor marrow was finished, the nurse said "Happy Birthday!" to me. By that time I was so exhausted, I couldn't even force myself to respond with a thank you and picture a day when I would look back at this time period as a relatively healthy person, because to me that day is eternities away.
Days 3, 4, 5: Radiation
Following days 1 and 2 where I received almost crack-level dose of the chemotherapy drug Cytoxan, I started receiving Total Body Irradiation (TBI, Google it and read the side effects before you read on, it'll make much more sense), twice a day for about an hour each. They would take me down to Radiation Oncology at 7:30am and lay me down on a stretcher in front of the machine that projects the radiation onto the patient from far away. I would lay on my left side for that whole hour, in a room where the temp is to 50 degrees (at least that's what it feels like) and would not be allowed to even more a finger. When the machine is actually on, I would say you mostly feel nothing, although with more and more sessions I could swear I felt the x-rays penetrating every sort of tissue in my body and destroying everything in their way. When I would be finally done around 9:00ish and come back to my room, I had only enough energy to go to the bathroom and then collapse into my bed again. The first day of radiation, I woke up at noon and squeezed in a workout on the treadmill before the afternoon session which started at 2:00pm. That second session was different, because they use lung blocks to try to protect your lungs at least part of the time, but it meant laying motionless on that frigid stretcher for an extra hour so that they get the exact positioning of my lungs in reference to the machine and take x-rays to figure out exactly how big the blocks should be. Those longer sessions were the kind of times you just sit there and wonder exactly what level your body is being destroyed at. I would try to not look directly at the machine in order to try to protect my eyes, but then I realized, no matter what I do I was at the point where I couldn't protect myself from the possibly lethal toxicity of that machine. I knew it was killing me at the cellular level and when you're sitting motionless with nothing to do but wonder about what's being done to you, your mind will tell you to flee. I wondered if it was too late to get out of it, and whether I should just run away from it. I wondered, by signing the consent form for radiation and BMT, had I signed my own death certificate? There was a lot of back and forth between yes and no for radiation for my transplant by the doctors, but they convinced me I needed it and that the benefits outweigh the risks for my case. When I was actually in those rooms getting the life sucked out of me, it took every ounce of mental energy to tell myself to restrain myself onto that stretcher. That's why during those 3 days, all I could do was lay in bed and try to sleep, but the pounding headaches wouldn't even let me do that. Therefore, I shall add these to the list of the great and many Infamous and Unfortunate Days of My Life, the kind where I was driven almost to madness and couldn't help but lose part of my faith in humanity and life.
Day 6: Transplant Day
My Mom and my brother, the donor, came into my room at 9:15am, to see me before the procedure. I told my bro good luck and hoped that he wouldn't be in there for too long. They ended up delaying his surgery for 4 hours, which meant that him and my Mom sat in the waiting room for 4 extra hours, before anything even began and they heard people screaming in the back. From their understanding, they thought they were waiting in the area where all the surgeries are performed on bone marrow donors, so the two of them sat there and thought the same painful stuff that made the other donors scream was about to happen to my brother. Now, my Mom is by far the strongest person I will ever know and she has withstood many, many injustices in her life, but yesterday I saw her so stressed out that she had to to the urgent care herself to see she felt so sick. When they finally called in my bro at 2:00pm to start preparing him for the procedure, my Mom came up to try to rest for a little bit, and I realized how hard it was her for to see not just one, but two of her babies on a hospital bed. There has only been one other time when I have seen my Mother shed a tear during my treatment and that was at the first moment I told her I had leukemia. Since then, until yesterday, she has dealt with everything with a huge heart and immense patience, but I knew it broke her heart yesterday to know how much pain my brother will feel even though he was doing such a great deed. To watch me go through so many painful procedures, and now to see my brother have to do the same broke her down and when I saw that her on her face, I felt more helpless than I have ever in my entire life. Her and I had a discussion at some point yesterday where I realized how similar we are in the way that we think. We were discussing how strenuous the last two years have been for our family and she said, "all I ever wanted was for God to give my children a life easier than mine, but I guess it was foolish to wish that."
Our entire family would wait for another 4 hours before we heard from the doctors about what happened in that Operating Room. By 6:00pm, the 5 of us waiting to hear about my brother were imagining all kinds of pain he must have felt for those hours and what sort of condition he will be in now. We were finally allowed to see him at 6:30 and that's when the nurse told me he was given full anesthesia, even though the plan was to only numb him from the spine down (that's what we were told, hence, all the tension about him feeling the pain during the procedure) meaning that he would be awake for the whole thing. The entire thing was only supposed to take about 1-1.5 hours, but for some reason, it took them longer and they also drew out more marrow than planned, 1.7 liters exactly. That's almost half of the entire marrow content he had. I don't understand why at Johns Hopkins they still do a surgical procedure to draw it out as opposed to giving people growth hormones and then collecting the marrow from just your blood. That would involve a procedure just as simple as a blood donation. Most hospital these days, use peripheral stem cells rather than actual marrow for transplantation.
Anyway, I finally got the big bag of donor cells by 6pm and it took almost 11 hours to infuse the whole thing into me. It wasn't a surgical procedure, they just gave me the marrow through the IV pump going into my catheter, same way that I get chemo. During those 11 hours, I had to be monitored very closely and they took vital signs every hour, meaning I couldn't really sleep. Meanwhile, my brother was in the recovery room until 2am last night and then he was provided a room in the hospital for him to stay at until he was strong enough to be able to walk again. They gave him pretty good pain meds during that time to help with the sudden onset of pain that almost shook him when he started fully waking up from the anesthesia. My parents were finally relieved to know that one of the longest days of their lives was finally over, but we all knew that none of the 6 of us will ever forget stress caused by this entire situation. During the last 2 years of my life that we've been dealing with cancer treatment, never has a single member of my family complained about having to spend so many nights in the hospital with me or being told to run around looking for this and that and being yelled at by nurses and doctors for no good reason. They have felt many of the same emotions that I have during this time and I know that if easier days do come by, the 6 of us will be so happy to be able to just be at home with each other. There are many times where I've wondered what I would do if another person in our family get a life-threatening disease like this that involves repetition of the same stressful times...all I can say is that if that actually happens, I will blow this whole planet up, because that's the kind of anger injustice brings about in me. Believe me, I have that sort of animosity hidden somewhere that I choose to close off and put away and that's why most people who know me can't imagine that sort of a side to my personality. When you mess with the Rangi Unit though, I won't even think twice about bringing it all out.
THE KEY TO MY LIFE....
P.S. My nurse from yesterday suggested this website to me about a BMT - Leukemia survivor who received the transplant here a few years ago:
http://theregoesmyhero.org/
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