Some Splainin’ To Do – Part 2 (mid 2016 till late mid December)

It should be noted that some of the information given in this post may be “gross” or “too much information” (more embarrassing for me than anything else), so you should keep that in mind going in. Other than that, I’ve done all the prefacing I feel I need to do in the first part, so let’s get right into continuing on with the story, shall we?

Summer 2016

With the university year done with and having basically given up with course work, the summer break began. I had decided, however, that I would still try to study for an exam that would be held in June and use my apartment – otherwise unused, but still paid for, for the rest of the summer – for a few days.

Early on after I got back home, I got a fairly embarrassing little nuisance to accompany me: hydrocele. While it may be too much information for some, it’s a condition where one’s testicles get swollen due to a build-up of liquids; it can go from slight welling to becoming the size of one’s fist and it can get really sensitive, leading to aching and pain. So if nothing else, you’ve now learned of a new unique condition. Whatever the case, while it was annoying and painful at times, the doctor I went to see it for told me that nothing would be done about it and that it usually went away in three to six months. It kept coming and going for the rest of the summer. Besides that, I noticed that my right leg had started to get a burning sensation every time I spent more than fifteen or so minutes sitting on a hard surface. Sometimes it didn’t come around if I was sitting “correctly,” in a way that, for some reason, didn’t trigger the effect. This continued to be an issue for the rest of the summer as well.

The day of traveling to Joensuu came in sooner than I’d wished, having barely studied for the exam at all. I spent over fifteen hours traveling, at least seven of which were just waiting for connections. It was also the cheapest way to travel, so I was willing to take the slower route. The next day I was stressing my head off about the exam, my conditions kept acting up, and eventually I just gave up with the idea of doing the exam; I’d rather take the course one of the following years and do the exam when I was properly prepared. So I just hung out for a few days before I moved on to visit my grandparents.

As I was (and still am) a cheapskate, I decided to walk to the bus stop in the city centre for an hour and a half with my fully packed backpack, laptop pack, and a huge duffel bag. The walk was grueling because of all the weight and due to a recent lack of exercise. I was afraid that I wouldn’t make it to the bus in time, but I actually had some time to spare in the end. Whatever the case, I got to visit my grandparents for a few days before needing to move on back home to prepare for my flight to Sweden to visit my grandfather with the intention of trying to practice a little bit of Swedish for the mandatory courses that would come up in the future.

Sweden (early to mid July)

The flights were – and in general have always been – a pain and a considerable source of stress for me; having reservations and schedules that are inflexible always have me nervous. If I remember correct, I didn’t have too many issues with anything and arrived safely to Copenhagen’s airport. I had gone through said airport many times in the past, but I had never actually exited the building through the main entrance. My grandfather was there to welcome me and we were soon on our way to visit Germany.

But I was meant to be going to Sweden? Well, Germany has cheap alcohol and my grandfather and his wife had had (approximately) a year’s worth ordered for pickup. So we went there for a brief visit to pick up the order and visit an alcohol selling ship. It was quite magnificent a sight to behold, from both outside and inside. It was during the plentiful walking that we did within the ship when I noticed that my right leg was starting to experience a familiar burning sensation. It was mild, but it was noticeable. I also noticed that I was getting tired quite fast, being forced to pause and stay still for a moment before moving on again. With the shopping eventually done, we started the drive to Sweden.

The drive was uneventful – mainly due to me sleeping through most of it – and we got to Blekinge sometime fairly late in the evening.

My grandfather is a bit of an active man, so he had a lot of activities planned for us after we had gotten over the trip back. Over the course of my first week, we visited a bunch of smaller towns and villages in the neighbouring counties, had walks in the local parks, did some bicycling around with electric bicycles (those things need some getting used to), and we got me some study materials in Swedish – that’s why I came here to begin with, right? All of the mentioned things would have been great if it hadn’t been for my hydrocele acting up fairly majorly at times and the burning sensation getting worse on top of a new, overwhelming feeling of tiredness after even short periods (10-15 minutes) of physical exertion. Said tiredness felt odd, like a pressure in my lower stomach. As for the burning feeling, it had started getting distractingly painful and it had started to get worse as I was walking. The only way to relieve my issues was rest.

The second week continued quite similar to the first, but the symptoms kept getting worse, which got my grandfather worried for my health and worried if I can join them in going to their summer home in Gotland, a large island the east of Sweden and a place I had not visited in ten years or so. The plan was to stay there for the next two or so weeks. He suggested that I should go home and see the doctor for all of my issues, but I told him that I was going to be fine until I left. He didn’t seem very reassured, but we went on to go to the summer home. The trip to the port was fairly long and even after we arrived, we had to wait for a while to get into the ferry. We took a night ferry to the island and it took us until fairly early in the morning to arrive to the cottage.

After having gotten situated, grandfather started coming up with activities again. There was some work to be done at the cottage and I, of course, did what I was requested to the best of my ability. My condition kept getting worse, which really dampened the mood and my ability to do anything. So I was spending a lot of time just sitting or otherwise resting. After a few days into this trip and into the third week, my grandfather, having become very concerned for my wellbeing, talked me over and got me a ticket back home. A few more days later I was already on a plane back home.

In the end, I didn’t get much studying done nor did I get to see as many sights or do as much photography as I would’ve wanted due to my constantly worsening condition.

The Big Reveal (late July)

After having gotten back home, I started considering going to see a doctor about the cornucopia of symptoms. I thought it over and decided against it due to having a suspicion of them just telling me to go to Joensuu and not bothering with helping me due to not being registered as a local resident and due to me going back there in a month or so anyway. So I decided against it. That is, until I started getting a fever.

This fever kept going up to 39 degrees celsius, only going down temporarily with a cocktail of ibuprofen and paracetamol. It took me three days of this fever staying with me before I decided to try to see the doctor. Surprisingly to me then, they took me in after I described the list of symptoms I had had; I simply didn’t have much – not that I have too much more now – trust in the bureaucratic side of things to be in my favour. So I went to see the doctor.

Having gotten to speak to the doctor, I started listing off all of my symptoms and giving my own opinions on what I think it could be, noting whatever anecdotes I thought might help in figuring out what’s wrong with me. The burning sensation in my leg, in my right thigh, seemed like a separate issue, so it was ignored for the time being and I was sent to two tests: an ultrasound and a batch of blood tests. The ultrasound was taken first, right after I had finished talking with the doctor.

I walked in and waited for a little bit before I was taken in for the first test. Never having had an ultrasound, I was a bit nervous about it. As the doctors came in to do the test, spreading the gel and whatnot after preparation, I calmed down. They didn’t talk to me much beyond introductions, but I did hear them talking to each other. I heard the more senior of the doctors describe my spleen – it was around 30 centimetres in length. That explains why my lower stomach was feeling pushed and as to why my stomach was sticking out so much. I didn’t know what this could be a symptom of so I didn’t think about it too much for the time being. Next morning came the time for the blood tests.

The tests were taken sometime before 10 am. I had never seen so many vials lined up for a single person to give blood for. I think there were about fourty (40) vials there; they obviously needed a lot more information than what they had. After the tests were done with, I went home, still amazed by the amount of vials. I didn’t get to stay there for too long, however, as the doctor called me a bit before lunch. He asked me if I could go to the Oulu University Hospital (OYS in Finnish). I was confused and asked when he wanted for me to go there, adding to my question “Now?” To my surprise, he said yes. I agreed after some back and forth about transportation – I REALLY didn’t want to pay for a taxi even if it was at a discounted price – and a confirmation by my dad that he could drop me off there before he went to work. The doctor never gave me a direct answer as to why I was going there.

I arrived at the hospital later that day, after an hour’s car ride. My dad had suggested that I take some clothes and my laptop with me just in case I had to stay in. I had been a bit hesitant, but I thought that I might as well do that – didn’t take the extra clothes though. So I checked in at the reception and they told me to wait for more blood tests. I thought it was odd that they wanted more, but I didn’t protest. They took me in and I was met with another mass of vials, this time with some larger bottles among them – these bottles were for checking bacterial infections, but I wasn’t aware of that at the time. After the blood had been drawn, I was taken to the back of the room to wait.

It took a while before I was met by a doctor who told me that I should be prepared to get hospitalised, that more testing had to be done at a ward, and that I most likely had leukemia, a blood cancer.

Leukemia

You always joke about it. Whenever you’re feeling unwell and wonder what’s wrong, you joke that if you go looking into it, it will always be cancer according to the internet. But when it actually hits you? I had no idea how to react; I was in shock. I called my mother and told her, matter of factly, about what I had been told. She had a much clearer reaction to it than I did. After having finished talking with her, I put on the hospital clothes that I had been given and waited to be taken to the hematological ward.

I was met by doctors at the ward who explained that they would need to take a biopsy and a sample of my stem cells, from the bone marrow. I had heard of this procedure before and I had heard that it’s incredibly painful. I was asked by the doctors for my consent for taking additional samples for research purposes after they were done explaining. I agreed; there was no reason not to contribute to scientific research of this kind even if it causes me more pain. I mean, what did I even have to lose after having most likely gotten something that a lot of people die to?

The procedure followed the next day. All the preparation for it around me as I was getting in position. The doctor felt around for the appropriate spot and made some markings before telling me that they would start. After the area was washed with alcohol, I was told that there would be a sting; they weren’t lying. The pain was something on a scale I had never felt before, the worst pain I had ever felt… but this was followed by the actual sample taking a few minutes later; this had just been the anesthesia. What I thought was the worst pain became the second worst when the doctor started to use force to wiggle around, trying to find a better spot for the sample. It was horrendous and I let out cries of pain as it felt like someone was trying to rip my spine out. It was all over in about fifteen minutes and it was far worse than I could’ve ever imagined. But it was over with. I was told that it would take a day or two to get the confirmation for leukemia, but that the specific type of it could only be pinpointed after some other tests were done in Helsinki. The confirmation came the following day and my treatment plan was put into effect.

Treatment (August to November)

The First Treatment Period

The plan started moving on smoothly, with no signs of allergic reactions to the various medicines. Sometime during the treatment I got confirmation that my case of leukemia was Ph+ CML – Philadelphia positive Chronic Myeloid Leukemia. I was assured over time how effective the treatment for it was and I grew very confident in my situation. Despite all of the confidence I had in medical professionals and medicine, a week or so in to the treatment the gravity of the situation still hit me; I spent a day or so trying to get over the overwhelming need to cry my eyes out. It was told to me early on that it would be the best course of action to aim for minimising the presence of the disease and then proceed into a stem cell transplant due to it having a high chance of achieving remission. No reason to go against this either. The only thing missing is a donator.

When it comes to donators, some third to a half of them can be found among your siblings. The body mass has to be similar (around here anyway), so my brother was my best chance to match up with. He didn’t object to it and went to get himself tested to see if we were compatible. Two weeks of waiting brought a negative answer – to the disappointment of both of us – and I was put on the waiting list for a public donator.

The estimated time until my transplant was thought to be around early 2017, in January at the earliest if everything went according to plan. There were talks of 3-5 treatment periods before the cancer would be in a state in which the transplant could be done. I was also told that at the end of each treatment period there would be a bone marrow sample to track the progress of the disease. The periods would be spread so that there was a week between the end and beginning of one; the time it took to see the progress. So I was in it for the long haul.

The medicines used had minimal side effects aside from the most common one, muscle atrophy. My muscles, particularly in my legs, wasted away as I spent most of my time in bed and as the cytostats (anti-cancer drugs) ate away at them while also dealing with the disease. I lost a lot of weight over the course of the first treatment period, ending up at 75kg (down from around 85kg before treatment). I hadn’t been 75kg since I was in middle school.  I also lost my hair, as is expected. Baldness apparently suits me too if my friends and family are to be believed. Whatever the case, time went by and I was released from the ward after my blood values started rising and my medication plan had been fulfilled.

The time home between treatment periods felt well deserved after having been stuck within a hospital ward for a bit over three weeks. Despite the atrophy, I was walking for longer periods of time (30-45 minutes) in a few weeks. But wasn’t I supposed to return to the ward for another treatment period after a week? As it turns out, things rarely go exactly as planned. My blood values had started climbing, yes, but the pace was quite slow and I simply wasn’t in good enough a condition for more of the cytostats. I was asked to take injections of a growth serum to hurry the process along. It took three weeks before the treatments could continue again.

Before my treatments continued, I was met with a massive wall of expenses – the huge bill from my first treatment period and the final rent payment for my apartment in Joensuu being the worst of them – that I couldn’t possibly pay without additional assistance from the government, so I set out to put in a request at the welfare office. I got all of the required documentation together, sent them, and expected worst; I didn’t expect for them to pay enough. That left me worried and stressed for the future. Thankfully my distrust of bureaucracy had been misplaced and I received far more assistance than I had expected, almost all of which went to paying the expenses off. I must admit that I’ve been fairly trusting of my local welfare office since then and I expect for their lenience in the future when it comes to reasonable requests that I can provide proof and explanations for. I do hope that my trust in them is not misplaced, for it has not been broken thus far.

The Second Treatment Period and Pre-Transplant

During my first period, a catheter was put into my neck to deliver the cytostats. This was done because the cytostats are very potent and thinner veins in the arms can’t take them for too long. This catheter worked fine for the time it was stuck to me, but it had started to get infected some two weeks after its insertion. It was removed before I had it for three weeks. Thankfully I didn’t need any intravenous medicines at that point. This catheter was put on the surface, but the one installed into me during the second period was a doozy. The second one, a Groshong catheter, was a tunneled one. That means that they punched in enough holes around my chest and throat to put the tubes under my skin. By force at times. The operation for it was quite unpleasant. I’d actually say that it was worse than the bone marrow aspirations just because of the fact that the whole thing went on for over half an hour. Even after it was installed, anything moving the tube caused pain. So until I was over with the second treatment, I barely did any moving of my neck or right upper arm; it took about a month before I had grown accustomed to it.

The second period itself went through a similar routine as the first one. The routine is essentially this: you’re given a set of cytostats over the course of several days, which is then followed by a waiting period of around a week and a half, after which your blood values drop low enough for you to be considered to be at a higher risk of infection and you get a private room for protection (if they have any available). The recovery period lasts from one and a half to two weeks, after which the appropriate testing is taken and you’re sent home to recover for the next period. The exception to this routine this time around was that I was that I was getting shakes and a fever each time I was given a pre-emptive anti-fungal medication. I think that’s about it because my memory between this period and the transplant are fairly hazy.

The next major event, in mid October, was the announcement of a donor having been found. To my surprise, I was given a week to arrange for a visit all the way to the capital to be given a full briefing on the procedure and on its various risks and possible future complications before I would be given a form for allowing myself to be given the transplant. So I arranged for the plane tickets, paying myself sick, and hoped that Kela would deliver – and they did after I provided the appropriate documentation and reasoning afterwards, thankfully. The day of the briefing came soon enough and I got myself to Helsinki University Hospital (HUS).

Flights, travel, everything went quite uneventfully and just as I would’ve ever expected for them to go. So, I arrived at the hospital and wandered about, not sure where to go. Surprisingly enough, the clinic for hemaetology was not at the “Comprehensive Cancer Centre,” but at the Triangle Hospital (as it read on the paper that I should’ve paid more attention to). I found myself at the clinic soon enough and waited for my appointment. I was called in soon enough.

To be honest, there wasn’t really all that much new information offered by the hour or so of the doctor and the nurse explaining things. A few new things I learned were about the risks that I would possibly face during or after the treatment period, however. One of them was the possibility of an unstoppable GVHD (Graft-Versus-Host Disease, a condition that comes about when a transplant – be that blood or a kidney – starts rejecting the host body, causing various negative effects on the host (including death)) should the medication not affect me as it was supposed to. In such a case there would be a painful, months long spiraling towards inevitable death as the blood I received would reject my body and destroy my organs. A very dark, unlikely possibility, but a possibility that I had to be informed about none the less. After I had been informed, I was asked if I would sign and take the transplant. I told them, quite bluntly, that I never had a doubt in my mind and that I came all the way there only to accept the deal. With the paperwork done, I began looking up schedules on Google Maps before heading out to wait for my departure back home.

Soon after I returned home, I had to go visit the hospital for some tests. After one of the tests on the first of November, I received a call from the HUS nurse while I was fetching supplies from the OUS haematological ward. She called in to inform me that the donor was ready to give the transplant within a month. While I was still shocked from the reveal, she told me that I would have to get into further testing on a ridiculously short schedule (within two days, in fact), but we managed to arrange everything closer to home rather than in Helsinki. I was told that my treatments would begin on the fifteenth. When I got home, I started arranging flights again for a longer stay in the southern regions of Finland.

Transplantation

I arrived to the ward on the fifteenth and checked in to my room. It was spacious all around, well equipped with a TV and a fridge. To my dismay, I was informed that I would not be able to leave the room for anything other than tests and treatments for the duration of my stay. Bummed out to hear that I couldn’t go out for one last time, I started getting cozy.

Preparations for the medications and treatments started on the days following my arrival and I even caught a fever as a result of some of the preparatory drugs. The actual treatments started on the weekend, on Saturday. They pumped large quantities of cytostats into me before they began the intensive radiation treatments on Monday. I was given six doses of said treatments and I have to say, it was awful. Not because the radiation itself was causing me to vomit or anything, but because the static position that I had to hold was hurting my bony shoulders and hip; I had to keep the position for an hour at a time. It was quite surprising to everyone, even myself, that the radiation treatment was not causing me to have stomach or vomiting issues. The actual transplantation took place on the 25th, after the final radiation treatments.

The reason for all the cytostats and radiation treatments was to eliminate whatever little of the leukemia I had in my blood stream and to actually demolish whatever blood production was happening in my spine to make my body more receptive for the transplanted blood.

Transplantation itself was a very simple procedure: I was given the stem cells intravenously from a blood bag. It was surprising how simple it was; I had expected that there would be some sort of insertion straight into the bone or something. Well, the pain and suffering was yet to come.

The transplant made me think, philosophise, a little bit. I had been given a stranger’s blood to take over mine. Did this mean that I was no longer a blood relative to my family members? Of course, family is what one makes one’s family; blood relation is not necessary. But bloodwise, I had become someone else, a stranger. I had been reborn in a sense, I suppose. It didn’t make me sad or anything, it just made me think a bunch. But onto the pain.

Post-Transplantation

Things such as cytostatic medication and radiation therapy can sometimes take a short while before starting to show side effects. Less than a week after the transplant, I was starting to get more and more tired. Not only did I get more tired, but I started getting diarrhea and pains swallowing; the radiation had temporarily damaged my mucous membranes between my mouth and stomach. The pain got so bad at one point that I could barely even swallow liquids. Despite not lasting longer than a week or so, it was still incredibly tiring, not being able to eat anything other than liquids. My mental health suffered from that a bit and I took out my frustrations on my nurses. I felt like an asshole afterwards and felt that I had to explain myself to them at a later point. But time flew by and I had to start arranging flights back home for Christmas.

Everything had gone according to the treatment schedule and I was released before Christmas. For a short while, at least.

Conclusion

So I kept getting worse after school had ended, obtaining more symptoms as time went on and eventually, after my trip to my grandfather in Sweden, they got so bad that I had to go to a hospital. I found myself in a haematological ward after I was told that I had leukemia and spent a lot of time either hospitalised or resting at home between treatment periods over the rest of the year. The disease was brought to a point where its presense was minimised enough for me to be able to take a stem cell transplant from some stranger in an attempt to eliminate the disease. The transplantation process was a bit of a pain, but it was successful in the end.

That was the second part, which ended being a LOT longer than I was expecting. I also would like to apologise (again) for it taking so long to get to the point of actually putting this out, but I’ve had very little energy to spare over the year 2017 thus far. Constant hospitalisation and various infections do that to a man, you know? But that’s what I will be talking more about in the third part of this series. Yes, it’s now a three parter thanks to how long it has taken to get this out and due to how much more has happened over the course of the last six months.

Part three will hopefully not take six damn months to produce. 🙂

Word count: 4997 (wow)

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