Some Splainin’ To Do – Part 3 (up till the current day)

Finally we reach the conclusion of this series summarising the events I’ve gone through over the past two or so years. It has seen many delays over the course of the last half a year which I will go into at parts in here. There isn’t much else to note before going in, so I’ll just move on to actually continuing on from where the last part ended, around Christmas.

Back Home

I was released from the ward a few days before my flights actually left, so I had some time to kill. It had been arranged a while ago that I would be staying with my aunt whenever I needed treatments this far south. I left for her house and stayed for a few days. The weekend passed by quickly and the day for flight came soon.

My relatives brought me to the airport. I was fairly weak after my treatments and it showed as I was going through security and the airport in general. My legs were killing me due to a lack of exercise and muscle atrophy, even after walking for a few kilometres worth over the course of thirty or so minutes. The eventual wait for the flight to arrive kept extending due to the unexpected snow slowing down the traffic, particularly up north. Such events did not improve my sour mood and continous aching, but what could one do but wait? So I waited. Impatiently. The plane arrived an hour and a half late. The flight and the taxi trip home were unexceptional. I arrived at around 1 am.

The days leading up to Christmas were nothing out of the ordinary; just your regular preparations and a bunch of waiting. Event wise, at least. I noticed a small burning sensation in the bottom of my feet a day or two before Christmas, but thought nothing of it at the time and just ignored it. I did call the ward about some worries regarding some throat aches, but they told me to wait to see if it persisted. It thankfully didn’t. Christmas came around, gifts were shared, burning pain in the feet increased. The pain kept increasing significantly, so I decided to consult with the ward staff again. They suggested that I seek medical attention, so I got checked in at Oulu.

When I arrived there, I was already feeling feverish and weak, my feet continuing to feel like they were on fire. Thankfully the pressure of the boots I had on helped manage the pain a bit. I was taken in, given antibiotics, and put into observation. The following day I was told that they needed to transfer me back to HUS for actual treatment, so I suggested that we could use the flight that I had already booked for later that day. After some consideration on their part and some assuring that I could take the pain, they agreed. With the appropriate paperwork with me, I left with the taxi driver for home to get my things and leave for the returning flight. Thankfully it was not late.

I got checked in to the ward sometime in the evening, but not much was done until the following day. I came in on December 27th.

The GHVD Saga

I was examined by the doctors during their rounds and since the symptoms and the cause were so obvious, they immediately upped my cortisone doses massively and it had to be delivered intravenously. This would not be good for my already atrophied musculature and feeble walking speed. I was also given a medicine called Jakavi to assist with my recovery since there had been signs of the cortisone not being enough just by itself. The use of Jakavi for the purposes of treating GVHD was a very recent thing (only started months ago), so I thought that was pretty exciting. Besides taking in my daily medication, much couldn’t be done; I just had to bide my time.

One of the side effects of the increased doses was that I started shedding my skin in some places. The most prominent ones were my feet, head, and neck. So I had to start keep applying lotion on my skin (in order not to get the hose again) on a daily basis to keep them in a decent condition. I did feel quite reptilian, to be honest. But by the time these annoyances were becoming more prominent, the painful burning sensation and redness on the bottom of my feet had started to subside. When I got a bit better, I started getting visits from a physiotherapist.

She advised me to do little bits of walking exercise each day to prepare for the eventual re-release. I followed her advice and tried to do some fifteen minutes of things every day despite not getting out of “the office” and sit on a chair. Yes, I was advised to spend more time on an actual chair instead of the bed. Why? To practise and maintain at least enough strength to be able to sit through the trips to and from home. I thought that was ridiculous, but I obliged regardless. Eventually the doctors deemed it okay for me to walk on the halls within the ward. A few days later I even got a permission to leave the ward and get some fresh air! I was almost ready to be released. Almost.

The Cytomegalo Saga

They discovered in the routine blood checks that I was positive for the Cytomegalovirus before I got out. Some two thirds of the adult population carry it within them, dormant, but it rarely manifests as anything worse than a little cold. This is different for immunosuppressed, as it is in the case of most infections, and it could be potentially lethal if it was allowed to stay untreated. It often takes several weeks before any actual symptoms show, so because the medication could be started immediately, it should never get to the point of being a threat. I wouldn’t need to stay at the ward to keep getting it, but I had to arrange some way to get it twice a day. The problem was that no other hospital besides HUS would be able to give the medicine to me. So I would have to travel 45 minutes to an hour four times a day for at least three consecutive weeks. All of it sounded, and would be, very exhausting and expensive, but I told the staff that I would make do. So they soon gave me the schedules and released me into the wild.

Just the five hundred metre walk to the bus stop was exhausting, not to mention soul-crushingly slow; it took me twenty minutes to get there. It didn’t bother me as much the first time as I was excited by the fact that I finally got to get home, to my aunt’s place. They had my room prepared for me and everything, I just had to unpack and get cosy. From the following day, I started the constant back and forth to and from HUS for Foscavir.

A bit about Foscavir. It’s a very strong anti-viral medication. If it’s dripped intravenously via a smaller and thinner vein like those on your arms, you can feel the burn as it moves up your arms. But when it’s given a catheter in your chest? You can barely feel it. I was thankful that they didn’t remove the central one I had had for months at that point. Even though I was not experiencing pain in that regard, there was a certain side effect that was going to bother me even after the treatments were over. That side effect? It burnt the tip of my junk. It could’ve been worse and there could’ve been internal ulcers, but knowing that didn’t make peeing or just the occasional movement any less painful. There was nothing that could be done about the pains, unfortunately, so I just had to suffer. Whatever the case, it’s never enough for you to suffer from a disease or its cure. There’s always something else.

The treatments continued on for a while without much changing. Until early February, that is.

The Polyoma Saga

Even though it was highly unlikely, I caught shingles (herpes zoster) while I was getting my Foscavir treatments. Foscavir is supposed to be a strong anti-viral, so how did I get another virus while I was on it? No idea, but I got it anyway. It was very painful for a few days before it started getting better, after I got a prescription specifically for it. While the Foscavir treatment ended after there were no signs of cytomegalo in my blood, the new prescription continued. Very shortly after this, early in February, things started getting worse, for I had caught a THIRD viral infection: the polyomavirus.

The virus itself started manifesting a bit slowly, showing as an increasing need to urinate as the infection manifested longer. This, however, was not the only issue that arose from it. Urination also became a lot more painful as days went on, and the cause was fairly clear after I noticed that there was blood. So, I called the ward because I was getting very worried. They told me that the most likely cause for all of this was the polyomavirus, an infection that has absolutely no cure out there and that usually lasts for around two weeks. The only suggestion they had was that I should take painkillers to alleviate the pain. The issue had been with me for less than a week, so I decided to try to tough it out. It didn’t get any easier.

The length of time between having to go to the toilet kept getting shorter and shorter as the days went on, finally getting so bad that I could not leave the bathroom any more and had to sleep in there. Even my dreams started involving the bathroom: I dreamed of sitting on the toilet for a while and leaving, but as I left in the toilet in the dream, I woke up to find myself still on the toilet. By this point the incessant nature of the infection was driving me insane and I managed to get myself to the ward after two weeks of suffering from the thing, with no end in sight. It was mid February at this point.

I was served painkillers at the ward and I was tubed so that I would not have to go to the toilet all the time. It turned out that I could not go to the toilet at all with that thing in me due to it causing massive pain every time I tried to sit on the seat, so other… less pleasant measures were taken; I was given a potty into the bed. It was embarrassing, but with all that pain, you simply stop caring for such trivial matters as pride and dignity. It took me days to get over that, however. So laxatives were a necessity in the beginning. My time there was not pleasant, and what was expected to be a week or two more of hospitalisation kept getting longer as the virus didn’t want to leave. After a month of suffering, three of which I spent at the ward, as everything was starting to look a lot better, something that still terrifies me happened.

The Delirium

On the 3rd of March, a Friday, as I was enjoying my evening in a lot less pain than usual, without a tube in my junk, I started noticing that I was making a lot more spelling errors as I was writing. I was consciously trying to correct the errors that I was making as I was making my Facebook posts, but I the writing kept getting more jumbled the more I tried to correct it.  I noticed that it was getting worse and I called in the nurses as select thoughts were starting to fill my mind: I was losing control of my ability to write. This was terrifying already, but when the nurse arrived, I realised that it was already much worse than I had thought.

As I tried to explain that I was having trouble writing, constantly making mistakes even when I was attempting to fix them, I noticed that she could not make much sense of what I was saying. I tried enunciating my words more slowly, but this is when I realised that everything I was putting out was being slurred out. This is where panic struck and I started getting irritated of not being understood and by the fear of potentially losing my ability to speak, write, or maybe even physically act.

I became more and more irrational as the evening started turning into night, becoming uncooperative, and eventually I started becoming violent enough that I had to be strapped in and be accompanied by a few hospital guards. I remember very little of the events after I was taken out of the ward for various tests, but I do remember that I could not take the thumping and clanking noises as a brain scan was being performed. I also remember bouts of laughing insanely as I attempted to get out of my restraints. But everything becomes a blank to me after that. I only know about the guards because I was told about it later, when I came to my senses on Sunday, the 5th of March. Oh, and I had ruined my tunnelled catheter in my chest as I had grabbed onto it and ripped it hard enough in my uncontrolled state that it was letting in air in to my veins. So the staff had tied it up in a lovely knot.

I had been heavily sedated at some point in the Friday evening and the nurses had gotten me to sleep. I, however, woke up in the middle of the night, staring blankly into the air, screaming in terror. My nurses attempted to make contact with me, but I was completely out of reach. At some point I just stopped and went back to sleep. I am thankful for not having been aware at this point, because I cannot imagine anything that could cause me to react in such a way; I’ve never seen such a horror and I am sure it could’ve traumatised me for life. I woke up several times later on Saturday, acting coherently, brushing my teeth myself, holding discussions, but I have no recollection of anything before Sunday, at around 12 am. Everything was confusing to me, I had vague recollections of things, and I was capable of speech normally. Since it was the middle of the night, I went to sleep.

I was brought up to speed with everything that had happened on the morning of the 5th. The visiting doctor explained to me that this kind of delirium was not unusual for the patients of haematological wards and that it most likely had something to do with the treatments. This is why they were giving me almost all of the medications I had been given in the past three months to keep the episode from repeating and to find out what caused it. She also noted that the actual cause is very rarely discovered. This was the case with me as well in the end.

After having kept me in the hospital for another week or so for observation, I was let go due to the symptoms of polyomavirus having become tolerable in frequency and in pain and there being no signs of the delirium repeating.

I used to think that the worst thing that could happen to me in life was to lose my ability to walk. The idea of that had terrified me to no end in the past, but after the bout of delirium I found that just losing the legs was something I could still manage. Should I ever lose my ability to express myself, control myself, and to think coherently, I would rather die than suffer such an existence. What I now fear the most is that I will not be allowed to die in that case. Regardless, I got to finally go back home after a month of hospitalisation.

The GVHD Saga – Part Deux, Revengeance, The Electric Boogaloo

My stomach had been a mess for quite a while by mid to late March. Despite it having been very active since the the transplant, it had somehow managed to get even worse after I was released from the hospital; I barely dared go outside because of how unreliably my stomach was working. I also noticed that I had become much more easily irritable by even the smallest of stressing situations when I was applying for returns and welfare from KELA.

The irritation and stress from the website not working and not fully understanding what I was filling in pushed me in to a nervous breakdown; it took me a fair few hours to just stop shaking and hyperventilating. I think I may have scared my aunt while I was having this episode. She seemed very distant for a few days before everything returned to relative normalcy. Stressing also has always worked up my stomach, so it was worse off than usual, but it was still nothing I’d go to the hospital for.

At this point, I’d like to make a note of a few medicines that I had started taking: Nebupent and Privigen.

Nebupent is an inhaled medicine that I had to start taking due to the tablets that I was taking weekly to prevent pneumocystis pneumonia. The tablets had to be replaced due to their negative effect on my already weak blood values, so in order to speed up the process, Nebupent was to be used. The inhalation is done once a month in a closed off room, at the hospital, and it takes approximately fifteen to thirty minutes to complete. So it’s quickly done with. That doesn’t mean that it’s at all pleasant. Up until the most recent time I’ve had it, I’ve had a hard time consuming it as it irritates the throat, tastes like tobacco smoke, and causes coughing fits. Until you learn the proper technique for taking it. Whatever the case, it’s an annoying medicine to take, but thankfully it’s a monthly matter instead of a triweekly – or weekly, like Abelcet (another inhaled medicine, but a lot more mild and used to prevent fungal infections).

Privigen, on the other hand, is an intravenously administered medicine to lift your immunoglobulin (antibody) levels that takes a damn long time to drip. It initially takes six hours to take, gradually speeding up to just four hours. That all depends on how you react to the medicine, however. The recipient of the medicine being me, of course everything goes tits up.

I’m warned about there being a very slight possibility of side effects. The nurses giving it to me proudly claimed that there had been no one with side effects in the last few weeks. So, of course I am the first one in a while to get them. It all started with a bit of itchiness in the throat, followed by coughing fits, which again was followed by the itching and reddening of the skin. My eyes also started getting irritated by it all, which apparently isn’t among the commonly known side effects. I’ve such great luck when there’s even the slightest of a chance of things going awry, don’t I? They end up giving me the appropriate medications in before the later administrations of the medicine, but the side effects still persisted in one form or another. So after the third time it was discontinued. I guess my immunoglobulin was close enough to the desired levels at that point. But back to my stomach and other matters.

I managed to arrange some time in mid April for visiting home after my stomach had become a bit more stable and I had confirmed that there were no infections (several times, as it had occasionally gotten worse). As always, I travelled with an empty stomach for hours on end, eventually reaching my various stops during the trip. Nothing of significance happened during this time. Well, I did have some issues with getting bloodwork done at my local clinic due to them making the bureaucratic part way more complicated than it needed to be, but that’s about it. ‘Twas really nice to see the family for the first time in a long while though; the last time having been back during Christmas. The next time I would see them again would be in a few months because, to no one’s surprise – surely – I started getting worse after my trip ended.

Late April, the 25th, I started experiencing constant, piercing stomach pains that I actually had to get painkillers for. I was also running back and forth in the bathroom so frequently that I eventually ended up just staying there for hours on end. I called in to the ward at the point where I started vomiting out everything I still had in my stomach. I started growing weaker as the day turned into evening, shaking from the cold whenever I had a moment of reprieve and could stay in my bed for a few minutes. My fever had started going up rapidly, and the constant deterioration of my state warranted for the calling of an ambulance. It was my first time in one as well, so that’s another thing I can check off the list of things I’ve not yet experienced. Whatever the case, I was taken to the Meilahti hospital, and I found myself first in a quarantine room before being moved into the oh-so-familiar haematological ward.

The symptoms and the over-active nature of my stomach had mysteriously started dissipating as soon as I had gotten to the hospital. In a few more days, the symptoms were almost gone due to the application of antibiotics. Being stuck in the ward for May day sucks, but hey, at least I got a doughnut and a bit of sima.  After a few more days of killing time, the stool samples coming in negative, and my symptoms constantly becoming less visible, I was released back into the wild. But first, they stopped the antibiotic.

The rest of the day I was released on went swimmingly, but the following day I was already starting to feel sick; I constantly felt bloated and had a feeling that I was going to vomit. Finally, the morning after that, I started vomiting again, my stomach started getting absurdly active, and I had to call in a taxi to haul my ass back to the hospital for the same exact symptoms that had appeared before.

Routine for the second time started out the same: the symptoms started dissipating almost as soon as I got myself to the hospital and started receiving the antibiotic; the stool samples came in negative. It was looking like it was the same exact thing as before, and as there were signs of infection in my blood, they decided to investigate much more thoroughly. Which is why they decided that it was time to look inside my guts and shove tubes down my throat and up my arse (an esophagogastroduodenoscopy (bit of a mouthful (pun intended)) and a colonoscopy respectively).

The Least Invasive Invasive Manoeuvres

I did have an esophagogastroduodenoscopy (EGD) before, during my first GVHD treatments in mid-January and I have to say that it was not a delightful experience. You’re kept without food or drink for at least four hours before the procedure, so I was already cranky as I hadn’t gotten to eat anything since the previous evening. So how do you think I felt when they, after applying some banana flavoured anaesthetic, started shoving a tube as thick as my thumb down my throat? There was a lot of gagging, an almost constant feeling of choking, and a constant need to burp. It all felt disgusting, but thankfully it was over in about fifteen minutes. They found confirmation for the GVHD back on the first time which negated the need for a colonoscopy that time, but this time? They found nothing. So the colonoscopy became a necessity this time around.

The idea of a tube going up one’s rectum is not a particularly pleasant one. But honestly, the preparation for it was much worse. For most people it would be really tough to go through some four litres of liquids in a day, two litres of which were meant to purge the contents of your stomach and the rest of your insides, but being made to do that in less than eight hours due to rapid changes in scheduling? That was hell, my friends.

At first they had given me an appointment on a Monday, several days away, with plenty of time to prepare for the event. This suddenly changed due to a cancellation on Friday, so I was given the time slot from there. Unfortunately, it was already Thursday, so I had to work on a hurried schedule. And thus, I was expected to chug four litres of liquids, spending no longer than an hour with each litre, by the end of the day. Not only did it have me running at the toilet constantly, but I also felt like my stomach would burst long before I was finished. To my surprise, however, I survived, but I was really damn hungry because after lunch I got absolutely nothing to eat until after the procedure would be done and over with the following day (at around lunch).

As for the procedure, despite feeling a bit embarrassed or having to wear trousers in which there was a large hole around your arse area, I had no significant feelings about. The fact that I was not constantly gagging or feeling like I was choking made up for the fact that the procedure took about a half hour to conclude. They took several biopsies with the endoscope and I followed the ‘adventure’ through the monitor in front of me. Some mild discomfort was felt throughout due to the tube reaching turning points in the guts, but other than that it was not all that bad. In the end they found their proof for the (mild, difficult to notice) GVHD and it seemed that the cause for my constant infections was the fact that small wounds had opened up in my guts, which then allowed for internal bacteria get into the blood stream and get me sick. With the cause now determined, treatment could be planned.

Photoshopping All The White Cells (Photopheresis Saga)

As they let me go home once more in early to mid May, after having kept me in for a few days longer than the previous time, they had me continue with my antibiotics. On top of this, they started scheduling me for photopheresis treatments.

Essentially, photopheresis is a countermeasure for GVHD. In the procedure, they remove blood from a major artery in your arm, some 150 ml at a time, and make it go through a centrifuge to separate the white cells from the blood, after which the blood is returned. This is repeated until enough white cells have been gathered. In my case, it took about 1.5 litres of blood. The gathered white cells are then subjected to a liquid that makes them more receptive to ultraviolet radiation. Then they obviously irradiate the white cells with UV light before returning them to your body as well. The purpose of this, as was explained to me, is to somehow ‘reprogramme’ the white cells to fight off GVHD. The irradiated, returned white cells would then transfer their new ‘programming’ into others of their kind and stop them from trying to kill me. Seems like a reasonable explanation for me.

They initially planned for a set of ten treatments, twice a week. This later extended to sixteen just to be sure. So I came to the hospital as scheduled to get the procedure done and I was pretty much stuck south for the summer. But this has not been a problem for me as I had, for some reason, started to regain my strength and vigour both mentally and physically after the stomach bugs were gotten rid of. It really felt like a huge weight had been lifted off my shoulders and I could and wanted to do so much more; my motivation and energy levels were at their highest in, perhaps, years. Some of it can be attributed to the cortisone, but my dosage hadn’t been upped, so the change seemed very out of place. I’m not complaining, however; I still feel fantastic.

The treatments, and most of the summer in general, have flown by really fast. It does help that I’ve had a lot of events, such as the confirmation of a cousin of mine and, most recently, my grandfather’s 80th birthday. I’ve exercised a lot, I’ve gotten back into video gaming and reading (maybe a bit too much of both on occasion, as you, the folks who’ve waited for the release of this post for a while, might’ve noticed), and I’ve started game mastering a Pathfinder game. Plenty of things have happened, but I’ll give a little bit more on the treatments before I come to a conclusion.

So, the first nine of the treatments were uneventful. With the exception of one. On that day, the nurse in charge of my treatment was a bit absent-minded, as she did the things in a wrong order and managed to, after having pulled the catheter set into my arm, get sprayed by a torrent of blood. The mess was minimal as the blood only sprayed on her uniform and nowhere else of note. I’ve heard that on occasion when these things happen, they’ve got to mop the ceiling of the room. Despite the mishap, the treatment continued as per normal. But then there was the tenth treatment.

On the tenth one, nothing was out of place. Nothing had changed from the previous treatments. But my arm just decided to start spasming early on in the cycle, locking up whatever movement of liquids in my treated vein. This apparently happens from time to time for no particular reason. After a while of trying to get things moving again, we had to give up on the treatment as the machine decided to shut itself down due to the blood in the machine having started coagulating and ruining whatever chances of continuing we had. Also, I lost about 150 ml of blood to the machine that day. Sounds pretty metal, I know. From there on out, I was given liquid Diazepam to prevent further spasming incidents.

I had to retake the tenth treatment, so I had seventeen treatment sessions in the end. On the final one, just last week, in mid to late July, my blood vessel decided to burst. Nothing serious came from it, not even significant pains, but it took them three attempts of inserting the catheter into my arm before the treatment could be started – and finished – successfully. After this was done, I was a free man with no scheduled treatment plans. Only doctor’s appointments and the occasional Nebupent inhalation on a monthly basis.

Conclusion

Sicknesses and mishaps have kept happening to me throughout my post-transplant period, either keeping me in pain, tired, in fear, or in uncertainty. A lot of the time since November has been spent in the confines of the ward, months in fact, but I’ve had my fair share of staying at my aunt’s house, at home. I can completely see why some people would not want to go through a process like this, and all things considered, I’ve actually been someone who can be considered ‘lucky’; my GVHD has been pretty mild and it has been counteracted by the measures taken by the medical staff.

Now, with my treatments and dosages starting to become less frequent and smaller respectively, I feel confident that I can finally return to my studies at the university after an obnoxiously long summer break. The future is unpredictable, and I may get sick again, get hospitalised again. But if I kept worrying about that and planning for that, I’d never be able to get back into attempting to have a life again. So I move on.

This concludes my account of the adventures with leukemia thus far. As I’m writing this, I’m preparing to leave my aunt’s house to go back north, do some packing there, and finally prepare to return to my hoods in Northern Karelia.

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