Breathe in, breathe out - step 1 for every day.
Hello people, this post is going to be very complicated, but you'll learn a lot, especially if you're going into the medical field. I might even have to break it down into two if it's too long and try not to go into excruciating details. No promises though.
A general timeline of the damage done to my body will help explain the condition I'm in now. Jan 1- 10 was all chemo and full body radiation and getting the donor's blood. That's the foundation of the damage that was/is to come for the next few months. Side effects of that for next 2-3 weeks were all things we were expecting: Mucositis (mouth cell destruction - no ability to eat or swallow), losing weight and appetite, fatigue, destruction of all cells in your body or complete loss of what's inside your bones. I've experienced this with just chemo cycles before as you all know, but I've never done it in combination with radiation until the transplant. It's no joke when they say it's lethal.
When that started healing and I started eating a little bit, I got VOD (vino occlusive disease) one day. That's when your kidneys and liver shut down at the same time, so you can't process food or liquids and everything that's been in your stomach for that day is unprocessed and whatever liquids are going in, stay in until the kidneys start to function again. VOD claims a lot of BMT patients lives in the second month (statistics and Google are not my friends). I just remember my stomach being so big from the unprocessed food that I thought I was about to give birth to twins any day. Also, I only drank liquids for those weeks as the feeling of fullness never went away. The kidneys started healing first, and then the liver, which is very slow. Also at this time, I had the CMV virus which mimics the same symptoms. The doctors there couldn't decide which one was causing what symptoms and for a while, I was told I may not even have VOD, just CMV. I took medication for both of course and the pain from the liver damage and my back was so intense that I had to take pain killers. Up until that point, they were useless to me, but there was a night when it was an emergency situation and the nightly pain attacks had me screaming and throwing things across the room. When you do that as a BMT patient, you can get any drug you want in the world as the nurse runs in. If you call nicely, they don't consider it that important to get to you.
That took me into March of this year and I got out of that mess. They did a bone marrow biopsy (don't worry, I'm gonna explain that procedure in detail one day, it's like having a thin, hollow pen corkscrewed into your lower back to extract bone marrow) and it was completely negative and leukemia free, so the next step was to get discharged from Hopkins and come back to my old hospital and oncologists at home. I was weak, but not to the point where lots of food and moving around wouldn't bring me back up in a few weeks. We used to get days off and come home and on those days, I felt improvement in everything. Things were going according to plan. Right about then, I started feeling this itchiness on my skin and real dryness in my mouth. I was losing sensation of taste in my mouth and every day things would taste worse and worse, more and more dry. I was pretty much shoving things down my throat. My liver started getting worse too and there was a good amount of stomach problems. One day, we were coming home in a somewhat tinted car, but sunlight came in for a few minutes when I was sleeping and burnt my face and eyes a little bit. What's all of this? Graft vs. Host Disease - what I was afraid of most. We went back to Hopkins the next day and for a couple weeks, they waited and didn't do anything. I was up all night itching like an animal, but apparently there wasn't enough proof that this is it and they didn't start medicine to treat it for a while. That was probably good for me as whatever medicine they were about to give me would almost ruin me forever.
Once the GVHD was officially diagnosed with a skin biopsy, we started a whole bunch of very strong medicine. IV drugs for 4-8 hours every day at the hospital. I somehow also contracted fungal pneumonia at the same time and that pill also causes dry skin and mouth, blurred vision, hallucinations, lack of appetite, etc. The CMV virus on top of these was also active, so the antibiotic pill for that was pretty intense and made my blood cell count drop. We know that puts me at risk for more infections by making my immune system weaker, especially when I'm in a hospital. The combined damage from 16 pills in the morning and 10 pills at night I took every day at the time turned me into a crazy person. I was given a much higher dose of the GVHD meds and some of the other meds and they weren't adjusted in time. I would shake so much, as in tremors in the hands and feet that I felt like any time now, some nerve was gonna burst. I tried to describe this to the doctors and they said it's normal, but failed to notice the psychological changes that were coming about. Everyone I talked to could tell I was different and didn't know how to keep going. The doctors there checked the levels of the meds, but it was pretty much too late. They couldn't find the right amount of the drugs to give me, so I suffered either way. I told them literally from my own mouth that this didn't feel right and I shouldn't be feeling that weak to the point where I can't walk any more. Eating was impossible. Every one of those drugs dries out your mouth; I have had no saliva of my own, even to this day, but I had to eat as the steroids were so strong. I had to keep my stomach full at all times or else I was a goner. I ate 6 meals a day. I'm down to 4-5 now, but I don't eat like I've been starving for years as I was doing then. It's amazing that with all that food, I still lost 10 lbs. and went under 100 for the first time since this started.
I asked the Nurse Practitioner if I could go back to my oncologist in Fairfax now. She said stay one more week with them and then I could transfer and gave me that weekend before off. It was right after my bday week, the week of April 15th, which were supposed to be the last appointments with them. April 16th was the official 100 days since my transplant and as a rule of thumb, that's when a lot of issues start resolving for BMT patients. Up until April 15th, I was being mentally and physically destroyed at a fast pace and I knew it. On top of that, the doctors said, you just need to keep pushing harder and make your body fight. I did that and told myself, one more week and then you're back home and everything will be fixed. The morning of Sunday the 15th, I got up and went to the bathroom by myself at home during that weekend off. My Mom has given me clear instructions to never do that. It's one of the only times I've done it, but this was the first time I fell. How? I don't know. My sister said they heard a loud noise upstairs and my slippers were taken off in front of the sink. I remember getting out of bed and walking into the bathroom to pee and then nothing. The injuries were internal: on my back and head. We don't know if I fell first and that led to the big bruise on my back and swelling in my head. If I fell first and had internal bleeding and that caused the seizures that started, then that means the medicine was responsible for the weakness and that's at fault. If I started having seizures first and lost consciousness as a result of that and then fell and had injuries that caused bodily damage from the fall, then I guess the medicine caused brain damage even before the fall. Basically the question is, we know I was weak, but without the fall, would I have gone to the ER and ICU? Either way, whatever I got at Hopkins is responsible for me being in that gentle condition plus my stupid idea to get up and go to the bathroom by myself. I had no bowel control at the time, so I didn't want to wait for someone to come all the way upstairs and risk peeing in the bed. That's how bad my liver was and how weak my body was.
I was unconscious and had multiple seizures that day and woke up a few days later at the ICU in INOVA Fairfax, once again, not knowing what happened to me in the last 3-4 days. I was definitely not in my senses. This time my family was really scared, because the last time I was in the ICU, it took me 1.5 months to get out of the hospital. I slowly woke up this time and said the weirdest things and thought everybody was thinking I'm crazy, so I have to prove otherwise. I apparently laughed a lot, but tried to seem normal, so that they would let me out of there and I wouldn't have more seizures from the shock and stress of being back in the hospital. On top of that, I just didn't have control over parts of my brain back yet, so a lot of times it really was me going crazy. They couldn't tell the difference, only I knew the difference. My family spent every minute with me though as it was so unpredictable when I would ask for a specific person and if they weren't there, there was no knowing what I would do. When I'm unconscious, I feel no pain, I don't remember anything. For them, the memories must be scarring, because I wake up acting crazy too and they never know if that's fully reversible or not. Only time tells.
Next few days, my medications were changed to safer ones for the same problems by the doctors here at Fairfax and that has made all the difference. My brain is healing, I'm actually on a seizure med now that's pretty strict with timing and avoiding stress. That's how you reverse previous brain damage - relaxation. If I start to seem like I'm losing control again, everyone at home has to take it down a notch and let me rest and eat. Whatever I need at the time. The most important factor though is sleeping well. If there's not a certain amount of rest, then I can't function the next day. I have to go the doctors now a few times a week and I still haven't fully gotten those diseases out of my body - still have GVHD, which I think is going away now as most of its signs are improving, and CMV is apparently still active. Fungal pneumonia is gone with the drug I'm on it for, but I still have to take that for the next two months on a prophylaxis basis. Basically, I have to take drugs for these problems for the next 2 months and then they can reassess what I need from there.
I'm getting the energy back to be able to walk, but it's hard to make people around you believe that in just 3 weeks that's possible. They supervise my every movement. I'm not allowed to walk 10 feet without holding onto something and having someone watch me. I think I'm past that point, I just need something or someone close by in case I trip and I can sit most of the day now and think rationally. I still do get angry very fast and emotional very easily, but there's more and more control each day as I realize what's happening. My memory is improving and the energy level is incomparable to even a few days ago. I eat 4 protein rich meals a day and the level of activity leaves me sore and resulting in strength gain. How do I know? I've done this before from a much lower point - wheelchair - I remember what it feels like to rebuild from scratch and how much time your body needs. I'm giving it enough time; I just have to give the same to my head and wait to get off the toxicity I'm putting into it. That's why when I was discharged, the doctor said, you need to relax instead of trying to jump back into the routine things you would do at home as that will heal you the fastest and reduce the risk of you catching anything else new. I've lived by these words the last two weeks and the results are amazing. This is why I had to be MIA, but it was still good to see texts/emails and get calls from everyone even in my delirious state. Basically, this time I lost my normal process of thinking and was hypersensitive about what's going on in my head, so hearing from people or remembering good times from the past was one of the best ways to relax. That's motivation to make a grand return as I always do.
P.S. I just realized my post titled "we aint done yet" predicts a seizure from the new meds at the time...
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