It’s been 100 days since the prisoners of Guantanamo began their hunger strike.
It has also been 100 days since my transplant. I’m happy to say not only am I sickle cell free, I got here without force feeding.Yay for Day 100!!!
I’m truly too happy to sleep.Day 100 is this Friday. I can’t believe it has already been 100 days since the transplant. Although its not completely over, there is something quite emotional about it. Well at least there should be. I get a lot of questions about how I plan to celebrate the day. In my quiet moments,I know I should feel fortunate and special. It would also be nice make new life resolutions and take the opportunity to change something fundamental about my existence. I should travel somewhere, meet people, learn a strange type of new age dance. Or maybe focus on the things that make me happy. The problem with that is, I don’t remember a time I had problems pleasuring myself. I would just be trying to fix things that were never broken. I could probably aspire to even higher levels of happiness than I have ever attained before but that would involve a fair amount of drug abuse. The truth is, for some reason, I don’t feel as excited about it as I should. It would have been easier to embrace the whole magnitude of change if it happened more quickly. From what I know about myself, I suppose the joy will dawn on me in the middle of some routine task several months from now.
In the meantime, the admin nurse sent me my day100 schedule:
Monday, May 13th
8:30 am FASTING blood work - Do not eat or drink after 12 midnight for labs to be drawn
Then OP7 clinic
11am Echocardiogram 5NE
12 noon Pulmonary Function test and 6 minute walk on 5NE
Wednesday May 15
12 noon Bone marrow aspirate on 3SWN procedure unit.
THURSDAY May 16
9:30 am-11am Neuropsych day 100 visit
I have done everything on this list before. The only thing I hoped never to do again is the bone marrow aspiration. I think I have pictures from the last time I did that. I can’t post them. They are way too graphic - even for me. My doctor will dig into my hip bone with a massive needle and take a sample of my bone marrow. Its like getting an injection only that the needle goes into the bone. I won’t feel it during the procedure because of the local anesthetic but after….
I feel good though. After all the sickness of the past few weeks, I woke up three days ago with more energy than I have had in a long time. One thing you learn going through something like this is to always take advantage of the good days.
The minor set back and steroid intervention last month has forced me to take a few steps back. Now things like extreme tiredness and a lack of appetite naturally plague me. It therefore came as no true surprise that my time here has been officially stretched till the end of June (for observation).
“God does not want you to be happy, He wants you to be strong.”
The extension of my time here made these words true in the way a phrase can also be false, invasive or totally irrelevant depending on what side of them you stand.
My counts are doing great this week and the chimerism test came back with a good percentage of donor cells. It makes up for the host of health issues I had this week (stomach problems, an ear infection, joint pain,respiratory virus, dizziness and total exhaustion). All of which individually would just be another day in this post transplant life but together, was almost too much. The problems persisted and then just like that, after two days of IV hydration and forced feeding, I woke up and it was like nothing had happened. It’s amazing what a little water can do.
I am not really complaining though because it seems there is an opposing relationship between how I feel and the quality of my cell counts. It is better to embrace the transient difficulty as part of the solution since it signals change. Like birth pain or some other less dramatic metaphor. From what I’ve picked up on, I should really be worried when I don’t have any issues.
For on weeks like these, I would much rather shirk these self imposed obligations to document this process.
Blackened finger nails from the radiation. It’s pretty cool but honestly, I was really hoping for some superpowers.
For a short time, I watched a few people interact with a revolving door.
Recently, I have been experiencing these glow-fly moments where I zone out completely and instead of fluorescent lights, I’m sucked in by utterly mundane processes. Blinking things, steam rising, people walking outside, birds copulating in trees, doors revolving…stuff like that. Things that are too basic to notice. I have is plenty time and lots of drugs to facilitate this behavior. I wonder if I have become more present or absent. I have spent my life constantly struggling between these contrasting spaces. I have learnt that to be partially present in one place sometimes means being absolutely absent from another.
My report cards from primary school indicate that I suffered from chronic day dreaming. Many times I remember facially intercepting a piece of chalk hurled at me to snap me back into the classroom. Where was my mind? Drifting away to more fantastic places. This mental looseness trickled into all aspects of my life,and was most evident in my terrible handwriting. It was not as simple as my hands having a k-leg. More like as I started to substitute one reality for another, there was a visceral decline in my penmanship. It took some harsher-than-necessary incentives to change my behavior. Now, as I become more disenchanted with writing, the better my handwriting gets; because in this regard, I was forced to learn presence. (I like that word: disenchanted. Meaning removal of magic. So necessary!)
Anyway, it all coalesced in my mind at my Monday (day 75) appointment. I walked in the doctors office and sat waiting for her to come in. For some reason,in my general experience, it is necessary to wait again for a doctor in their own office. Maybe it’s an interrogation tactic:
‘Why don’t you sit and stew over all the anti-stem cell things you did this week!’
Its probably not.
Well, she came in and started giving me a run down of all the things that had happened in my body over the past week. Next thing my mother was waking me up sounding completely embarrassed. It took me a second to realize what happened. I was actively engaged in the dialog and suddenly checked out in the most aggressive way possible. I had fallen asleep to the point of snoring. I told the doctor how sorry I was and at the last moment decided against giving her a hug. It would have been a well deserved hug. All my profuseness was premature because the onslaught of my bad behavior was not over. The doctor had asked me to wait a few minutes, since the lab was not back with my blood counts. I somehow responded to this by leaving. I only realized I had failed her once again when I got home. By then the damage had been wrought.
On my way out, what did I stop to pay glow-fly attention to? The revolving front door of NIH! As much as I would like to express my thoughts on the riveting world of automatic spinning portals, I won’t. Phrase of advice though. Boldly enter and stay away from the center!
The next morning the doctor I had apologized to and subsequently offended called me. So once again in my life, I started the day with my first utterances being a steady slur of apologies. She was graceful about the whole thing. She had only called to reiterate everything I ‘missed’ the day before: my white counts had doubled and my other counts were steady. All good things! I would have to take a the chimerism test I took on day 70 all over again. The last results were inconclusive but I wasn’t about to be trippin’ about that. I will find out a week from now what percent of Leke is flowing in my veins. I feel like things are starting to happen as they should.
An excerpt from an email I received recently from my administrative nurse:
“Hi Bisade,
Dr. Hsieh would like you take 3mg alternating with 4mg of the sirolimus. If you took 4mg today take 3mg tomorrow (alternate 3mg with 4mg)
Your blood counts are stable and the WBC count and platelets are up a little more today so that is good. How are you doing? Did you go to the zoo? “
Progress…..it seems!
For a short time, I watched a few people interact with a revolving door.
Recently, I have been experiencing these glow fly moments where I zone out completely and instead of fluorescent lights, I’m sucked in by utterly mundane processes. Blinking things, steam rising, people walking outside, birds copulating in trees, doors revolving…stuff like that. Things that are too basic to notice. I have is plenty time and lots if drugs to facilitate this behavior. I wonder if I have become more present or absent. I have spent my life constantly struggling between these contrasting spaces. I have learnt that to be partially present in one place sometimes means being absolutely absent from another.
My report cards from primary school indicate that I suffered from chronic day dreaming. Many times I remember facially intercepting a piece of chalk hurled at me to snap me back into the classroom. Where was my mind? Drifting away to more fantastic places. This mental looseness trickled into all aspects of my life,and was most evident in my terrible handwriting. It was not as simple as my hands having a k-leg. More like as I started to substitute one reality for another, there was a visceral decline in my penmanship. It took some harsher-than-necessary incentives to change my behavior. Now, as I become more disenchanted with writing, the better my handwriting gets; because in this regard, I was forced to learn presence. (I like that word: disenchanted. Meaning removal of magic. So necessary!)
Anyway, it all coalesced in my mind at my Monday (day 75) appointment. I walked in the doctors office and sat waiting for her to come in. For some reason,in my general experience, it is necessary to wait again for a doctor in their own office. Maybe it’s an interrogation tactic:
‘Why don’t you sit and stew over all the anti-stem cell things you did this week!’
Its probably not.
Well, she came in and started giving me a run down of all the things that had happened in my body over the past week. Next thing my mother was waking me up sounding completely embarrassed. It took me a second to realize what happened. I was actively engaged in the dialog and suddenly checked out in the most aggressive way possible. I had fallen asleep to the point of snoring. I told the doctor how sorry I was and at the last moment decided against giving her a hug. It would have been a well deserved hug. All my profuseness was premature because the onslaught of my bad behavior was not over. The doctor had asked me to wait a few minutes, since the lab was not back with my blood counts. I somehow responded to this by leaving. I only realized I had failed her once again when I got home. By then the damage had been wrought.
On my way out, what did I stop to pay glow-fly attention to? The revolving front door of NIH! As much as I would like to express my thoughts on the riveting world of automatic spinning portals, I won’t. Phrase of advice though. Boldly enter and stay away from the center!
The next morning the doctor I had apologized to and subsequently offended called me. So once again in my life, I started the day with my first utterances being a steady slur of apologies. She was graceful about the whole thing. She had just called reiterate everything I ‘missed’ the day before: my white counts had doubled and my other counts were steady. All good things! I would have to take a the chimerism test I took on day 70 all over again. The last results were inconclusive but I wasn’t about to be trippin’ about that. I will find out a week from now what percent of Leke was flowing in my veins. I feel like things are starting to happen as they should.
An except of an email I received recently from my administrative nurse:
“Hi Bisade,
Dr. Hsieh would like you take 3mg alternating with 4mg of the sirolimus. If you took 4mg today take 3mg tomorrow (alternate 3mg with 4mg)
Your blood counts are stable and the WBC count and platelets are up a little more today so that is good. How are you doing? Did you go to the zoo? “
Progress…..it seems!
namagera asked: My Abisade, When we first met, I was unaware of your condition. Not because I was not paying you mind, but because no matter the hurdle, you overcame. You are the bravest person I have ever met. You have a radiance that puts even the sun to shame. You inspire me more than my simple words could express. I love you. Get well soon. Gera Kiwanuka P.S. Drinks on Day 100?
Gera!
I mean Spyro! I just hid it a lot. Now I am wondering why I hid something that defined me so much from people I care about. My friend called me and almost made me cry the other day complaining about how he has known me for years and I never mentioned it. I guess its easier to talk about it at the end. Sadly I have given up alcohol for good. My liver has done enough work for a life time and a half. You inspire me too Gera. Maybe one day we can talk about that.
frommymindwithlove asked: So do you plan on embarrassing the "common" look forever??
I am trying to grow out my hair. Its like a little pixie. Its growing out all soft and nice but then its all patchy and evasive. Why won’t it just grow back? I miss it passionately. The bald look is not bad but its too hard to maintain.
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.”
Awesome!
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.
Elephant? Stewie Griffin with earrings?
