(Warning: This blog post is non-technical but purely personal. I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)
This is the eleventh post in a series on my personal road from first signs of leukemia, through diagnosis and treatment, to, hopefully, full recovery. Click here to read all posts in this series.
I’m writing this on April 5th. A long time since my previous health update. Most of that time was spent in the hospital, bur I was discharged on March 21, so I’ve already been home for two weeks now. Time for a new update.
A boring stay …
Most of my hospital stay was rather boring. I got my medication (lots and lots and lots of pills, plus several intravenously applied medications – see my previous blog in this series), had my daily family visits, and spent the rest of the day doing some work on my video courses, playing games, or simply resting when I was tired or bored. Unlike my first and second period in hospital, I did not get any extra diseases this time, so I did not feel quite as bad as those times. I did not exactly feel good, but it was a lot easier than I had expected.
… with a rough end
But that changed, severely. I don’t recall the exact date, but I guess it was a few days into March. Suddenly, my tongue felt very sore. I had developed something on my tongue. Not sure exactly what, it looked like a rash. A very severe rash. And it hurt like hell.
Apparently, this is a common side effect of the chemotherapy I had gotten before my stem cell transplantation. Not everyone gets it, but some do. And a few “lucky people” get a very extreme form. Guess what … I was one of those lucky people.
I was unable to eat for sheer pain when any food touched my tongue. I was barely able to speak, because the tongue movements needed to produce sound made my tongue hurt. Even when I just lay on my bed and did nothing, I was in pain.
I was given pain killers. Extreme ones, in extreme dosage. Eventually the dosage was ramped up to 70 mg of morphine daily, plus extra as needed. (For the extra, I was given a button that I could push when I wanted – the device was programmed to observe minimum intervals and maximum daily dosage, though, so it was safe). I am pretty sure that my actual morphine usage those days exceeded 100 mg. With such high dosages, tablets don’t cut it. All this morphine was given to me intravenously.
Luckily, that ordeal did not last long. After a few days, my tongue stopped hurting. It was replaced with pain in my throat while swallowing, but that was much more bearable (and also only lasted a few days). And it was also replaced by a terrible taste in my mouth, that did last for way too long.
My gut told me that the pain was gone, and the painkillers could be stopped. But the specialists had different thoughts. Either because they didn’t trust my feeling that all pain was gone (and to be honest, It’s definitely possible that it was just less … so much less that the high morphine dosage completely suppressed it). Or, more likely, because it is simply unsafe to cut down from such high dosage to zero at once. Either way, they took a few days to stepwise reduce the dosage, until finally the levels were low enough that I could switch back from intravenous to tablets.
The day that my pain killer switched from intravenous to tablets was also the day that the doctors discharged me from the hospital. That was March 21. A bit unexpected, since just days before the doctors had predicted that it would take at least a week more. So my wife and children had to adjust all their plans to make the house ready, and ensure that someone could come to the hospital to pick me up.
Coming home was great. Finally out of the hospital. Finally back in my own house, surrounded by my loved ones. And yet, strange as it may sound, that first day was disappointing too. Retroactively, I had made a big mistake. I had put it in my head that, once I’d be home, anything would be better. Despite all the warnings that the doctors had given me, that was in my head, subconsciously.
But of course, things do not get magically better when one gets home. I still had the last remnants of the pain in my throat while swallowing. I still had the terrible taste in my mouth. I still had (and still have, to this day) severely damaged tastebuds, and equally damaged intestines. I still had close to zero stamina, very little focus. I was cold, tired, without appetite, and when I forced myself to eat, it didn’t taste well at all.
Long road ahead
Eventually, that disappointment went away. I had been warned, I just had not realized it sufficiently. Once it happened, I had a rough moment. But that went away, eventually.
Reality is that I still have a very, very long road to recovery ahead of me. The doctors have warned me that it can take up to a full year before I’ll be fully recovered. I have not yet asked whether that is a minimum, an average, or a maximum.
At this time, I do what I can to help my body heal as fast as possible. I had lost 10 kilogram during my last time in hospital, but 2 of those are back already. I force myself to take a walk every day. At first, those were really short, not more then 400 meter. Today I already managed just over 1.5 kilometer. And my walking speed, while still not as fast as I used to walk before I went to hospital, has also gone up quite a bit again.
My agenda for the coming weeks and months is littered with hospital appointments. Almost weekly, I have to go to the hospital (as outpatient) to get my blood measured and talk to the hematologist. During my last visit there, she shared the result of an examination of my blood to measure the ratio of blood cells produced by donor stem cells versus blood cells produces by my own old stem cells. The target for that point in time, according to the doctor, would be at least 90% bold produced by donor stem cells. My result was a whopping 100%. That means that at least at this time, my body has accepted the donor cells and is using them. This is not a full guarantee that things will remain that way, rejection of donor stem cells can happen immediately, but can also happen after months. But at least for now, it is very good news.
During the coming months, I will also receive lots of vaccinations. A side effect of the stem cell transplantation is that my old immune system has been wiped out. Including all immunities that it has learned during my lifetime, either by surviving illnesses or by receiving vaccination. All of that is gone, up to and including the many infectious diseases that I got vaccinated for as a child, such as diphtheria, whooping cough, smallpox, and many others. But also the much more recent vaccinations against Covid-19 will have to be redone. Not all those vaccinations can be done at once, that would put too much strain on my still recovering body. Hence the twelve-month plan that has been made for my re-vaccination.
At this time I have had exactly zero of those vaccinations. So I still have to be extremely careful in interactions with other humans. Each and any contagious disease will hit me, and might make me very ill, because my immune system is also still recovering.
I am out of the hospital, after a successful stem cell transplantation. First examinations of my blood indicate that the procedure has been successful. That is not a guarantee for the future, but at least it is reassuring for this moment.
But I am still very vulnerable. My body has been weakened, and will need lots of time to recover. My immune system is weak, and has “forgotten” all of the immunities it has learned throughout my life, either by overcoming an illness or by vaccination. Restoring a good level of safety will take many months. During that period, I will have to remain very restrictive with human contact, because every pathogen currently poses a threat to me.
Despite the long road ahead of me, I remain positive. I now that I have no guarantee, but I trust that I’ll recover fully. And hopefully faster than predicted by the doctors. I cannot wait to pick up the things I love to do once again, such as playing musical theatre, and of course visiting conferences and meeting my database friends. As soon as it is safe to pick up those things, I will … even if that is still many months away.
So looking forward to seeing you again and giving you a hug. We miss you.
Glad you’re home and recovering. Wishing you well, Hugo.
Amazing ordeal you had to go through, and amazing to be home and have made it through.
Glad everything went well enough eventually that you are now home and on the road to recovery and normalcy 🙂
After all good news, although the road ahead is still full of dangerous curves. Really looking forward to meet you in person again! (And in better shape than last time when we met in Glasgow!)
Hoping your road to recovery is one that goes quick and gets easier. I went through prostate cancer treatment in 2020. 5 weeks radiation and 2 weeks later surgery to implant radioactive seeds. My experience was nothing compared to yours. But I will say that something I did to help get my gut/digestive tract bacteria back in shape was drink ginger kumbucha (preferred the GTS brand) and take Visbiome probiotic. Not sure which helped more but I feel like they made a lot of difference to my digestive tract. I still drink ginger kombucha regularly but not a lot each day. With what happen with your tongue I imagine the bad bacteria took hold substantially throughout your digestive system. Get some form of probiotic that you can take regularly to keep it at bay.
Good luck in your recovery!