Sunday, May 31, 2015

Day -3

Transplants are like marathons. I am not a runner. I have tried to be a number of times, but always ultimately fail. It's just not my thing. But my big sis is an avid jogger. It clears her mind and relieves her stress (she's cool like that). Half marathons are something she takes on as personal challenges, and she has described them to me as mind games. The problem is not actually getting your body to go 13 or whatever miles, it is getting your  mind to let your body go 13 or whatever miles. You might start out strong and positive, have some moments of doubt every couple miles, and believe that there is absolutely no freaking way you will survive another step around mile 9, but if you mentally push past that, you make it. Transplants are like that. A transplant is a huge marathon, with each day being a mini-marathon of its own. And really, the problem is not getting your body through the procedure, it's getting your mind through the procedure.

My first transplant was an emotional experience for me. I was terrified that I would die during the transplant--actually, about 100% sure I would not make it. Many doctors had been unkind about my chances of beating the cancer with it having come back a second time in general, and looking at papers I was expected to sign at 17 that said I had a huge chance of dying from said transplant did not help my emotional state. I did not feel like I could agree to the procedure. My social worker sat down with me and said this: "You're scared of dying? That's why you don't want to do the transplant?" (I nodded.) "Well, you are definitely going to die if you don't do the transplant. And you know what? You could die when you get in the car and leave this hospital. I could. Your doctor could. You could die tomorrow. You can't let the possibility of death dictate your decisions." He was kind of a jerk, but his words stuck with me. I can't tell you how many times in the past year I have heard, "'re very strange. There are just not many people in your position. When Hodgkin's comes back, that's usually it, and we definitely don't see many third time transplant patients." I chock it up to my innate stubbornness and some purpose that God still has for me. We'll see.  

Anyway. It was emotional. The worst part of the transplant actually happened while my grandparents were visiting, which was about halfway through the procedure. So far, my mom had warmed me up canned Campbell's Chicken Noodle Soup that we had personally purchased for most of my meals. I had mouth sores and no appetite, but I was determined not to have a feeding tube put in. So I choked down the only soup I could handle that had enough calories to keep the dieticians off my back. The nurse I had on this particular day was apparently "not aware of" (not accepting of) the new policy that patients could bring in their own food as long as it was processed--i.e. canned, in a sealed bag, etc. He threw a fit that my mother was trying to bring me in food other than that from their cafeteria, and actually took the soup away. I lost it. I bawled and bawled, and felt like such an idiot as my wise and calm grandma hugged me and said that it would be alright. She was on my side, of course, but I felt stupid for being so upset over soup. I was just working so hard to eat, and we had done nothing wrong. It was unbearable. The nurse ended up being "told" about the policy (I am not still bitter about this) and I got my soups back, but I will always remember that day. It just about broke my resolve, and I have thought back to it many times. I had pretty firmly convinced myself it was just because I was a hormonal teenager until today.

Today was really emotional. Lot's of drama that really stemmed from nothing. It's ridiculous how pleasant conversations can turn into huge miscommunications and thoughtless words beget more thoughtless words. And it doesn't even really matter if someone is sick or what the circumstances are, drama happens, but I have the emotional fortitude of a 17-year-old right now, it seems. And I cried like I did at 17, and I felt like the whole world was out to get me and that so many people are terrible human beings. I wish my grandma had been here to give me a hug. I also really miss my daughter. Seeing her face on a screen brings me almost immediately to tears. This is also illogical (we just watched Star Trek) as we have sent her away for 3 or 4 days before and enjoyed the freedom to spend time together many times, but right now I physically ache for her. I just want to see her sweet face and wrap her up in a hug. I want to hear her babble on about all her little passions and just soak in her presence. Three more days.

But really, the transplant is going ok. I have been nauseous the past two days, but still able to go on walks and eat the calories I am required to. My counts just barely hit the "normal" range today, which is somewhat humorous. For some reason, my blood counts have been incredibly high for months. Doctors thought it might be a secondary cancer and have cut out more portions of my body than I care to think about, as well as required me to have another (unnecessary) bone marrow biopsy, all to no avail. No one understands what it means, but all the medical master minds have decided it is odd and interesting, but nothing else. One doctor told me that high blood counts are sometimes seen in people who are very stressed, and that's probably as good an explanation as any with my mental state over the past few months. If my blood counts did not drop as low as normal patients because of how high they have been, it would get me out of here a lot sooner. Also, one doctor told us that studies have shown patients whose counts do not completely bottom out tend to fare better post-transplant. Maybe there is a higher plan in the works.

Today was my last day with my favorite nurse and I soaked up every minute. She got called out of my room twice because she had stayed to talk for 15 or 20 minutes. :-) I cherished the conversations full of belly laughs and shared stories. I'm going to miss her. Colten also leaves tomorrow morning, and just typing those words just about brings me to tears. I am not sure how I will fare without his steadfast spirit and reassuring strength as the days get harder. I have to admit, I am not much looking forward to tomorrow. But, tonight we took a walk around the hospital after the sun set. The walkway was lit with pretty lanterns and the trees were silent silhouettes above their glow. Their leaves were mostly dark as we passed underneath, but they were flecked with bits of light that were stunning. I guess it comes back to the age old adage, "the light always shines in the dark," and that is true no matter how much darkness there is, and no matter how small the light.


  1. Hang in there! You're doing great. Just keep taking it a day at a time and then you'll be out before you know it. Life moments, just keep focusing on your life moments. Always one step closer to the next one.

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