+7 means 7 days have elapsed from the time of my transplant til now. This is how they count the rest of your days in the hospital and I guess the rest of your life after transplant. It's as if they're adding bonus days to what could've been my last day ever. Let's say when I turn 30, I would say I'm 24 + 5 years and 88 days old, with everything after the + being a result of this miraculous transplant process.
Many people are under the assumption that the transplant process is a surgical procedure where after it's performed, you're done at the hospital and you know whether it was successful or not. This is not true at all...I'm going to explain what happens next and why the Bone Marrow Transplant (BMT) is the most complicated procedure in all of medicine.
First week you spend at the hospital, they give you chemo and radiation to delete all the cells you currently have in your bones (at least that's the goal), which is called the prep phase. Then on 7th day of your hospital stay, as known as Day 0 on your BMT calender, they give you the donor cells, which looks just like a big bag of blood that they infuse over your IV line, like a blood transfusion. Then the week after the transplant day, your body starts to process everything they've done to it, meaning cells in your body start dying to make room for the new donor ones. When all of the host's cells are dead, you reach the minimum point of your blood cell counts and you stay at zero for about 2 weeks or more. Then the new marrow engrafts and starts producing new cells and your immune system cells grow over the next few months gradually.
Now, during that low is when you experience the worst side-effects of all the toxic drugs they've given you so far. Right after the transplant day, all the nurses told me to enjoy the couple days of an energy boost, because apparently after that I would hit rock bottom. Over the last 7 days, I have slowly reached my lowest point, feeling worse and worse with every day after the transplant, to point where I have no immune system at all today. During the process of reaching this point, here's what happens in your body:
- Mucositis: Cells in your mouth and the rest of the GI tract die slowly resulting in a swollen tongue with cuts all over your mouth and throat. The rest of the lining of cells down your GI tract, all the way to the other end is completely destroyed. Hence, ulcers from one end to the other. On Day +1, this was bearable, but now it's at the point where they're giving me morphine before meals so I can swallow tiny amounts of food. Oh and it hurts to even talk.
- Bloody nose: my nose is currently blocked with dried up blood that I'm not supposed to blow out as it will cause additional nose bleeding. All thanks to a low platelet count.
- Nausea/Vomiting: I have no appetite. When I get hungry, I try to eat, but nothing stays down. If you know me at all, you know how much I love food, but even the thought of eating makes me nauseous right now.
- Headaches: At this point, they have no idea which one of the thousand drugs they've given me is causing pounding headaches, but they're blaming the chemo for now.
- Diarrhea: If by some miracle I do manage to put something in my stomach, it comes right out.
- Insomnia: Even IV Benadryl has failed. I stay awake through IV Morphine also.
- Fatigue: I'm not talking about the simple 'I have no energy' kind of tiredness...When I wake up, it feels like someone took a baseball bat and hit me in the head several times and then proceeded to take a hit at every part of the rest of my body.
All of the above are getting worse as days go on and will only start resolving once my cells grow back. There's no way of predicting how long that will actually take and there are about a million things that can go wrong in the meantime when you have no immune system. If I catch even a simple virus, I will find myself in a critical condition in the ICU fighting for my life (repetition of events that transpired in March/April 2010). At that point, when they have completely emptied out your bones and killed off your immune system, it's merely a question of how good the ICU doctors are in keeping you alive until your transplanted cells start to grow, but getting critically ill before the engraftment of new cells can lead to failure of any engraftment at all, meaning overall transplant failure. I don't even know what they do in situations like those...but these are the type of complications that occur in BMT patients, leading the outcome of the procedure to be highly unpredictable. One of the doctors I consulted before deciding to go ahead with this described the uncertainty of the outcome as "the [inherent] nature of the beast" which I must wrestle with everything on the line, hoping to come out having won it all. I guess you can't win it all without risking it all, eh? I'm still millions of miles away from that moment though, so I can't allow myself to even imagine what victory will taste like, because I don't want to jinx it.
What does it feel like to know your bones are completely empty? It's an unusual feeling resulting from a combination of lethargy and fatigue. I have to wear a mask, a gown and gloves when I leave my room and anyone who enters mine has to do the same. All of the patients in the BMT ward are under these precautions - it's almost like a cult of a sort. All 16 of us look like trained monsters connected to huge IV machines, with no hair, not even eyebrows sometimes, usually confined to our rooms and with every passing moment, imagining the day we will be done with this grueling process and come out and destroy the world. When you pass by another patient in the hallway, even if no words are exchanged, there's an exchange of silent respect that can only be communicated to someone going through exactly the same thing as you. They feel the same pain, they have the same problem, and there is no bond stronger than mutual suffering. I will say this though, being the youngest person here is definitely in my favor...a lot of the other patients have so much trouble walking and managing day to day activities. It breaks my heart to see one of the rooms with "BIOHAZARD!!" and "DO NOT ENTER!!" signs. I'm assuming the poor guy/lady has some sort of a contagious infection or something that confines them to their room. There's nothing sadder than that. I feel so lucky every time I walk by his room.
Speaking of monsters, I have a calender in my room that my friend Nicole sent me with a lot of pictures from when we both attended UVA. Most nurses come into my room and ask me who the person in those photos is, because it looks nothing like me anymore. I resemble Voldemort more and more with each passing day and wish I had red contacts for my eyes, so I can take a picture and freak people out. Also, one nurse said I look like I'm 14 years old and thought that my little bro/sis were older than me...I shall take this as a complement considering I'm about to be pretty old this year.
All Mutants are required to wear wrist bands that identify them at all times...you can only remove it when you're getting out. Some of the most liberating moments of my life have been the exact second I cut these off of my arm after getting discharged.
Thinking of you, Gurpreet. I know you are going through so much right now, and I only can send you wishes of strength & hope. I love you very much, and thank you for keeping us in the know with your blog. <3
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