Firstly, I’d like to say thank you to everyone from the bottom of my heart for your kind words, and all of the cards, pictures, fake flowers, real flowers (which I can’t have, but put in the nurse’s break room), cupcakes for nurses, pictures, games, blankets, coloring books and patience in my lack of allowance of visitors. My room is obnoxious with decor. It’s warm, filled with love and laughter and as wonderful as a hospital room can get.
The unsung heroes in this have been my team: Justin, Emily, Phil, Nora, Vicki, TBG and my parents. Each and every one of them were here in the hospital almost every single day making sure that I ate when I didn’t think that I could, helped me shower and wash my hair when I couldn’t stand and held me when I needed to cry suddenly. They spoke with doctors and did research when I was unable, washed my clothes, fought for what I needed when I couldn’t ask and made what I hope to be the hardest trial of my life as comfortable as it could be. I love you all and can’t thank you enough.
There’s no kosher way to put this: Leukemia is fucked up.I’m still fascinated by how naive I was about the disease as a whole and the battles that people are fighting on the floor of this hospital. I found myself saying to Phil this morning, “I have it easy.” To which he replied, “There’s nothing about this that is easy.”
From what we’re seeing, I have the best case scenerio for someone with this type of Leukemia. I have a subtype of AML which is intermediate risk, which also requires transplant. With my brother as a match, we can move into transplant without coordinating with the donor list, and I’m at much less risk for many of the problems that occur with transplants, mainly graph host disease, which causes lifelong health problems… however, with my imagination, I would think that I could possibly grow an eyeball on my back. (This of course probably had something to do with the amount of Dilaudid I was on when we had this conversation with the doctors. Further research shows that there is no instance of anyone growing an eyeball on their back.)
Tuesday, I’m headed home… I’m basically done with the easy part. Yes, the easy part. For the next three weeks or so, I will go into pre-transplant mode where I get prepared for the hard part. If my brother wasn’t a match, I’d have to go through what they call “Consolidation Chemo” until a donor was found and coordinated to be here in order to keep my Leukemia in remission. I’ll be getting CT Scans, Blood tests, allergy tests (to avoid another full body rash), Xrays, and more. I’ll be visiting the clinic at the hospital for check ups and blood tests to make sure that my cell counts are at safe levels and avoiding anyone with a sneeze.
The hard part
In about a month, my brother will come out for four or five days at which point, I’ll start what they call “High Dose Chemo” and he’ll start drugs to stimulate his bone marrow to produce more stem cells. High dose chemo will completely destroy my bone marrow. It’s another 7 straight days of chemo, I’ll be in the transplant floor of St. Luke’s and I’ll be pretty out of commission. This will cause my counts to drop to zero again, so I won’t be taking visitors again, and at that point, they have my brother sit in a chair for about five hours while they filter stem cells from his blood. Then they’ll give his stem cells to me, and I’ll start recovering. This will put me in the hospital for at least another 30 days.
When I’m released from the hospital, I’ll spend the next 60 days living in sterile environments with caregivers. Our plan is to sterilize a few of our houses, and then I’ll kind of float between them. This is the thing that blew my mind and made me want to quit… I can’t be alone for 30-60 days and I won’t be able to drive. The reason for this is that someone, throughout the day will need to make sure that I’m lucid, and take my temperature, make sure that I’m not getting sick and be available to take me to the clinic at a moments notice. It’ll likely be friends working from home just hanging out. Emily and Nora are going to set up a calendar for care to make sure that I’m covered. So, this is where a lot of the funds will actually come into play… keeping the houses sterile, additional home care and needs associated with home care.
What’s craziest is that I have the best possible scenario for someone with Leukemia and treatment. I’m young, healthy otherwise, my brother is a match, and the chemo appears to be working. I have amazing health insurance, and Accenture has been completely supportive and flexible with my leave of absence. The stories that I’ve heard of other patients are insane… people here for 6-8 months because the chemo doesn’t take or they can’t find a match. They often lose their homes, can’t return to work because of the limitations of the disease, or in some cases, die.
The truth is that I’m terrified. There are so many unknowns and so many factors into me getting out of this that I have to just take it one day at a time and trust that I’m taken care of and everything will be okay. My life is in the hands of others and I have to trust that they have my best interests in mind. The thought that there may be periods where I’m not lucid is terrifying and the thought of the burden on my friends and family (though they assure my that it’s completely the opposite) is incredibly hard to accept.
So, you see… shaving my head was the easiest thing that I’ve had to deal with since I’ve been here. It was the one thing that I had control over… and I got to have a mohawk for a few days.
Keep me in your thoughts and prayers. Reach out to my caregivers and family and lend them your love. Their job is much harder than mine. Seeing someone that you care about in pain is incredibly hard to deal with. My job is easy: Get through this.