My roommate woke me up this morning. She hates doing that. I don’t particularly mind. Sleep never was a priority.
I used to set an alarm at the beginning of the process. I tried to be at NIH on my clinic days by 8:30am. This was back when I was excited to know what my counts were doing. Recently I waking up at that that time. I just slept in as long as possible. Today, there is no desire to leave my bed until 9am. I take about 15minutes after I’m awake to convince myself to put my feet on the ground.
“Be mindful! Focus on your breathing!” I think. “Feel the softness of the carpet beneath your feet.” A short exercise to help concentration and general awareness. It’s not working today. So much for that. I hop I’m the shower and I deliberately burn myself to satisfy my masochistic tendencies. I am not passionate about my new shampoo. It smells less manly than I am personally comfortable with. I’m stuck with it for at least a month depending on how many nighttime showers I take. I notice two new bumps on my arm that were not there before. I scratch….the slippery flower soap saves me from myself. I probably should not be doing that anyway.
I’m starving. No epic breakfast today. I can’t eat. One of my blood draws is a glucose test. I’m not really hungry anyway it’s all in my head. Psychological hunger. I had to fast from midnight the night before. Somehow it’s a massive deal when you are told you can’t eat for any period of time. My flatmate who is coincidentally mother and designated care giver is in the middle of her morning devotion. Religion and I have not really had the luxury of pleasant conversation. Something about crying out at the worst possible moment of pain inherently brings out the faith in the greatest of skeptics. Lord knows I cried through many painful nights. Many times hoping reprieve would come miraculously or in the form of morphine (a miracle in itself). At least there would be some finality. Some peace. So I made deals and negotiated. How naive I was. Later came the anger from being ignored. Then I took consolation in the probability no one was listening. Soon after were the dark days, until one day I finally accepted the endlessness of the situation. Pain, denial, anger, bargaining…To pray easily is a prayer in itself. Now here I am close to the end. Was it always leading to this? What does it all mean? Why me? ….deep thoughts as I tied my shoe laces and waited for my mother to be done with her prayers.
We are on the train now, “Mask on!” The adults look alway awkwardly. They all assume I have cancer. I don’t mind. I take the opportunity to study each of them. Every one as complicated as the next, dealing with inherited problems and limited resources. The kids stare, some of them wave. They have not been taught yet that all bald black men are dangerous. It’s like they can see truth. Some of us are just trying to get over chemo.There is an inherent beauty and sadness to their innocence. My mother takes a seat next to this middle eastern woman who so sitting with her legs crossed like she owns the train. Judging from the ring on her finger, she probably does. Just giving the rest of us a lift. NIH is one stop away so our journey is quite short. I hardly bother to sit down.
A blast of wind greets us as we reach the escalators. We have a system here. My mask remains on and I have to stand in front of my mom so she is not talking down in my face. These escalators are endless and I make a point to measure in time the journey to the top. I realize I have planned on doing this so many times. I probably won’t. I’ll always wonder about it.
“You are quiet! Penny for your thoughts?”
I am interrupted by my mother. I mumble some semblance of a response. She has got used to my strange solitary behaviors. She makes a point to observe me closely. They asked her to note if my medicine was starting to make me crazy. Since then she looks at me differently when I’m normally acting strange. Like the one time I could have sworn she was wearing a brand new pair of glasses. I was so adamant. She just held her hand over her mouth and slowly came to hug me. “All those drugs are frying your brain, B!” They looked really new! What else can I say? The immunosuppressants do space me out though. They also cause a lot of joint pain so I have to take morphine for those. Between the two drugs, I can see how some things could suddenly go missing in my head. I feel normal though. I guess that’s the point of being crazy. Its actually not real craziness, more like a few missing details here and there. Occasional confusion about basic things. No big deal.
It was nice outside so instead of riding the shuttle as we usually do, we decided to walk. I don’t like the shuttle. To many people clustered too tightly like on the train. For some reason, the windows are sealed shut so when someone coughs, my eyes open wide with horror. It’s like I can see all the tiny little molecules of death floating towards me. So I’m sitting there mentally holding my breath, judging the person that coughed and will most likely keep coughing throughout the journey. I’ve had some horror stories in this regard. Once, on the train, a man threw up in front of me. I was tempted to chop him in the throat to induce anaphylactic shock and force his throat to snap shut. I decided against this action since I would most likely end up his nastiness on my hand from the initial impact. I ended up running into the next carriage at the next train stop. Somehow, almost missing the train I was already on. #posttransplantadventures.
At phlebotomy, Joyce was on a break so someone else has to do me. Joyce has hand picked a nice South Korean lady as her replacement. In my silence, I observe that her lab coat is new and pay her a compliment. That definitely brightened her day. After my blood is drawn I go sit by my mom in the waiting room. We are so experienced now. We don’t rush up to clinic anymore. We wait an hour otherwise the doctor has to see me without knowing my blood results. This generally makes for a very boring check up. While we wait, I take my medicines. All 99 of them. I can’t take them before my blood is drawn on clinic days since they compromise the blood sample. It takes about 30 minutes before my high dose of immunosuppressants start to kick in. Any last thoughts? It’s like a cloud lands over my brain. I can’t be bothered to do anything. It’s not a high or a low. More like a dampening. It’s like those cloudy-for-cloudy sake days where it’s not raining but the sun can quite break through….in my head. Some days it causes joint pain and when I’m super lucky, nausea. Today was just a cloudy-joint-pain day. I would take this over the nausea days any time.
Instead of waiting to see the doctor in the regular waiting area, I find a sofa somewhere where I can just lie down and space out for another hour. My mother is really patient throughout this process. She has a good book and is just grateful she can read in peace. Once I have broken my ‘waste away’ threshold, we go in and the doctor comes to get us almost immediately. It’s like they were waiting the whole time for me to get up. My feeling of self importance rises….not by much.
I’m waiting in the doctors office, watching the clock tick. Literally watching the second hand go by. The longer I watch it, the faster it seems to be going. What if I hypnotize myself my mistake? How will I snap myself out of my own hypnosis since I will be hypnotized and therefore probably not know I’m hypnotized? Do hypnotized people know they are hypnotized?…
Suddenly I wake up to a knock on the door and the doctor walks in. I slept sitting. These drugs cannot be criticized for lack if depth.
“Your white cells are still very low. But your bone pain indicates bone marrow activity and coupled with the fact that your reticlocite (new red cells) counts are up, I would say something is happening.”
On hearing this, I do a Tiger Woods fist pump.
“Not so fast!”
Oh no, here comes the other foot.
“We know that you are making cells, what kind of cells, we are not sure. They could be yours or your brothers. Obviously we hope they are your brothers but we don’t know for sure….yet.”
They are Leke’s cells. I tell myself.
“Your immunosuppressant levels were really high in your blood. How about you stop taking it till you come in on Thursday? We can re-evaluate then.”
I remember I need refills and bring it up so he puts it in the system. For some reason the pharmacy has a billion years to get patients medicine ready. There is a touch screen computer at the door where I have to put in my name in exchange for a little slip with a number on it. I have to wait till this number shows up on the screen before I can approach the window. Since this wait can be unholy, my social worker advised me to get a number at the start of the day if I know I have to pick up some medication. I can even do this before the doctor puts my order in. This way I never have to wait. It’s a little hole in the system that I usually exploit. I forgot today, so we waited and I ended up falling asleep again. I am not sure how long I slept but when I woke up, my number was on the screen and I had written the last chapter of this whole story in my head.
This is a typical Monday or Thursday in my fascinating post-transplant life.