We are 74 days post transplant and so far, we are doing very well. At least as well as can be expected. The transplant itself is rather anticlimactic. You spend months waiting, and waiting, then when you arrived they pump you full of toxins that literally bring you to deaths door before giving you the stem cells, a process that takes all of 10 minutes. Then still you have to wait and wait and feel like crap till one day, you finally start to feel slightly better. I have heard a lot of patience explain it like you literally wake up and you physically and mentally sort of snap back into the present, and though you feel “better” you still feel pretty bad. Once you get that feeling and know that the cells took to your body and you start the long recovery.
In the beginning, I honestly couldn't figure out why we would have to be here so long. It seemed rather straight forward when described to me in layman's terms, but now having been here for nearly four months and having met dozens of fellow patients and caregivers as well as the many Attending, Fellows, Dietitians, Pharmacists, Nurses, and many more, I can appreciate just how complicated and delicate this process is.
I have come to realize how a compliant patient like my dad goes a long way to moving forward in our recovery and also the consequences of ignoring what the doctors say. Many people here are patients who did not listen to the doctors and now are paying the consequences by returning to Seattle with more severe cases of Grafts versus Hosts Disease (GVHD).
Being someone who feels that rules are usually made to be broken, and someone who also views a doctor’s order not to do something as a personal challenge. If I ever get something as deadly as cancer, I hope that I will be able to make myself be compliant or at least hope that there are people around that me that will force me to be compliant. I have been raised on herbs and alternate methods or healing, and I am someone who prefers to just give my body nutrients and simply let it take care of itself. But I have also spent much time in the hospital being healed by modern medicine and have had many surgeries. There is a time where alternate methods are fine, but there are also times where the doctors are right and the hospital is the place to get taken care of. There was a lady in here (a caregiver for her brother) who was talking about trying alternate methods while going though this process. It was something that I understood, but I also know that you just don't mess with what the doctors are already doing; it is such a delicate process as it is.
Seeing things from a caregiver’s side and not a patient’s side is also fairly new to me. Also the fact that my parent is the patient and me, the child, is the caregiver, is also a little new, though I suppose this is probably part of why couples have kids, so when they need help being taken care of they can call in a favor that they very much earned. Most of the patients here are between 45 and 65, so most of the caregivers are fairly older ladies with the exception of a 29-year-old guy who I talk with a lot and another older man. I always crack up when they include me when they say “we” or try to include me in their gossip or try to set me up with the dietitian.
In the Bone Marrow Transplant Unit we have our own family room that we all hang out in while waiting to be finished for the day. I am social for at least a little while every day, but I generally end up at one of the other family rooms where no one else is so I can read, watch a movie or just have some quiet. However, when I do finally get time on my own in one of the ICU family rooms, there always seems to be other visitors who come in to talk. We exchange greetings and then before I can get back to reading, I hear that there is a terminally ill family member that they are here to visit and I feel heartless if I got back to reading so I end up talking with them for a bit. Though Acute Myeloid Leukemia (AML) is extremely dangerous and my dad has nearly died twice since we arrived, I forget how easy we really have it. My dad was extremely healthy before he got here so he has handled the treatment slightly better than expected and seems to be able to bounce back from these crazy toxins amazingly fast. We are actually doing so well and we have it much better than lots of people in this very hospital. Since we have been here, I know of 3 people that were sent home so they can be comfortable, as there is nothing more that can be done about their condition. In many cases, if the transplant doesn't take, the cancer comes back with a vengeance.
I remember talking with my mom while I was recovering from my first Aorta Valve replacement about how we can use our experience to help other parents and patents get through their difficult experiences in the hospital. In fact, while I was in the hospital recovering, my mom told me that the patient next door to me was a 4 year old who was getting an Aorta Valve replacement like did and that he and his parents were a little freaked out. So we went over and talked to them for a while and them seeing me having already gone through it only the day before and them being able to ask us questions was something that really helped them a lot.
We have talked about writing a book, or starting an organization and several other ideas. I don't know if it will even become something that big, but I think that those ideas are something I would like to put into practice. With our experience in hospitals as patents and as caregivers, we feel like there are things we can do to help people that are alone or scared.
I have been looking into getting a dog for a while and being the animal fanatic that I am, I kinda became obsessed with the idea of having lots of pets. My dad tells me, after freaking out when I see a dog or any animal, that I am having animal withdrawals because I haven't been able to hold my snakes and only am able to pet animals infrequently … Okay, moving on … dogs, right. Katelyn and I have been looking at different breeds. I want a German Shepherd, she wants a Golden Retriever. Both of us grew up with the dog we want and constantly point out to each other why the breed we want is awesome…so I think we are going to end up getting both, once I get back to FL. I really want to get the Golden Retriever trained as a therapy dog so we can take him with us to hospitals to visit people. I remember people doing that while I was a patent and I see people bringing dogs into this hospital all the time for the same reason, though not in the Bone Marrow Transplant Unit. They are really careful about germs here because everyone is on immunosuppressants. But there are places where you can bring them. I brought up maybe even bringing my snakes to visit people too, but my mom and Katelyn were both skeptical as to whether that would be allowed :)
Things definitely get a little lonely here at times. As you all know, I am a man not known for is endless supply of patience but I am known for doing crazy things and staying very active. Well, the only places to be active are a volleyball court (I played once a week that is now finished for the season) and at a gym. Fishing is crazy awesome up here, but I left all my fishing stuff down in FL. There is a rock climbing gym not far from me, but it costs a bit of money that I am not willing to spend. I did manage to catch deal at a gym about 2 miles from me, so I am starting to workout there as an outlet.
Up here, we all are out of state, so we constantly talk about what we next have to do to get closer to going home. I find myself doing the same, but that just brings me to think about the stress of going back to FL and having to find a place to live and my worries about my lack of income here and how my life is on hold until this is over and more inconveniences in general. In retrospect I can see how dumb I was being and how loose of a hold I kept of my tongue and how much I was looking at practical things and leaving God out of the picture. I didn’t realize this until my dad told me, very humbly, that he was in a stable enough condition that if I wanted to go back to FL and start working on getting my feet back under me, he could ask his family in Utah if they could go to plan B and each of them come up in 2 week increments to care for him until this was over. I was dumbstruck. I felt horrible that I would even say things that even resembled dropped hints anywhere near my dad that I didn't want to be with him during this trying time. I had called home to a few people just to vent and get my thoughts out, but I didn't realize just how far I had let it go. I would never leave in the middle of this, unless there was a medical emergency that required my attention in which case we could have someone else cover me here until I could return. I felt horrible that I would be more worried about getting home for me and not my dad, who's life is going to be changed forever now since this treatment.
That was a humbling conversation and as I already knew and Paul had to remind me, this is what I signed up for. I knew it was going to be a long time up here and that this would become another one of my homes. I knew that it was going to be hard for Katelyn and mine’s relationship. Our entire relationship has been long distance; one of us is always out of town. I knew all of this, and I hope to avoid putting someone in that awkward position in the future and just trust my situation to God. Thank you all for your prayers and support though this adventure. I really can’t thank you enough.
Your brother in Christ,