(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 sixth 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.
My original plan to keep posting frequent updates has not worked out. It’s almost a month since the previous update. My plan for this post is to go through that entire period, but not on a day by day basis. I just want to make sure that all who read these posts get caught up.
An angry stomach and a tired head
My last blog ended with my stomach refusing, in a rather violent way, to accept the food I had chosen. Was that just a response to a food my body dislikes? Or was it something else?
I’ll never know. But I do know that the very next day, Sunday September 25th, my stomach upped the ante. As soon as breakfast was served, before even taking a single byte, my stomach once more contracted and tried to throw out what was not even there.
And after that I was tired. Not just normally tired, but insanely tired. Not just my body, but also my head and even my spirit. I wanted nothing. All day I stayed in bed. All day I felt tired. All day I wanted nothing except stay in bed and do nothing. It’s hard to put in words just exactly how tired I felt, but I am glad I never had that same feeling again (so far?) because it felt bad. I was too tired to even wish to get better. I just didn’t care. I lacked the energy to care. And that was, later when I looked back at it, really frightening. Fighting for recovery has defined me since I got my diagnosis. But that day I just didn’t care.
Luckily that feeling did not return. I had one more, final for now, episode where my stomach tried to empty itself, even though it was empty; that was the very next day (September 26th) and once more before breakfast. But this time I didn’t get quite as tired, my energy felt normal, and once my stomach had settled down I had a reasonable normal day.
High fevers, and a tired body
But the normal didn’t last long. Later that week, I don’t recall the exact day, I woke up feeling hot and sweaty. But after a restroom break, when I returned to bed, that changed: I felt cold, I started to shiver and shake all over, and I quickly called the nurse. She took my temperature and as both she and I expected: I had a fever. My temperature was in the high 38’s at that time, and would later that day reached 39.2. (For those more used to Fahrenheit, over 100 at first, 102.5 later).
Immediately the medical machinery was put in motion. I was given some heat pillows to help my body warm up and stop the shivering and shaking. Lots of extra blood samples were taken. My still healing teeth were immediately checked, to make sure no infection had started there. Various other things were checked as well – I don’t recall all the details. And I was given a fever suppressant, plus a broad mix of antibiotics to at least get started combating the most likely offenders while the research into the exact cause was ongoing. That made me feel better – but still not very good. I was tired. Not the type of tired I had been before. This was just my body. I wanted to … no, needed to lie down and rest, and that’s what I did. But this time my head was not quite as tired, and my spirit, my willingness to fight to get better, were there.
It actually took a few days before the offender was found. Two things happened almost at the same time, and together they explained what was going on.
The first was a doctor telling me that the blood analysis had revealed two unusual types of bacteria that they had trouble identifying, and before they started further analysis she wanted to know whether I had ever been in Africa (yes), or in Asia (also yes), or in Eastern Europe (yes, lots of times). Upon hearing those confirmations she explained that they suspected the bacteria to be alien to Western Europe, and now she knew they’d have to test for a broad range of possible visitors.
About that same time I noticed a painful, pressure sensitive spot on one of my buttocks. A reported it, a surgeon was called to take a look, and it turned out to be an abscess. After some consultation between the various specialties, the surgeon cut the abscess open and cleaned it, then left it to heal as an open wound (which by the way takes a long time – it is still not fully healed as I write this). Healing as an open wound apparently prevents the wound from starting to collect new pus and forming a new abscess.
So my laymen’s explanation of why I got so ill is that during one of my many travels, either to a conference or for vacation, I must have become infected with two “alien” bacteria. My immune system at that time was healthy enough to prevent them doing anything bad, but they must have found a spot in my body where they could encapsulate themselves and bide their time. Patiently waiting. Until leukemia at first and then the chemotherapy on top weakened my immune system down to the point where those bacteria could finally attack me and win.
(A small side note. My blood values were regularly tested, and whenever the red blood cell count or platelet count was getting too low, I would receive donor blood, or donor platelets. But it’s apparently not possible to give donor white blood cells to a patient. So my white blood cell count simply was low and remained low – and exactly that is why those alien bacteria finally had a chance to attack me).
With the combined effect of the abscess cut open and cleaned, and the antibiotics tweaked to the now identified bacteria types, I was able to recover. But that took a long time. Apparently, the bacteria had already reached my blood, and for that reason I remained quite ill for a long period. I guess about two weeks or so?
All that time I was tired. I spent most of the time in bed. Just doing a simple thing such as going to the bathroom was enough to exhaust me and force me back into bed. So during that entire period, I have not once switched on my laptop. I simply lacked the energy.
Loss of appetite
During the period of that alien bacterial infection, I also entered what is officially known as “the dip”. That is the name for the period that starts when the poisons given to me during chemotherapy have reached maximum effect, in other words when my stem cells are as damaged as they get; and that ends when my stem cells have recovered enough that my blood values start to improve without outside help. In all honesty, it is really hard to be sure whether I was as tired as I was during this period because of the infection or because of the dip. Probably both.
But there are more side effects of chemotherapy. And one that I started to experience during this period was a dry mouth. My salivary glands seemed to have stopped working totally, I had to drink or spray moisture in my mouth as the only way to keep it from getting dry.
This had a rather unpleasant effect on my food intake. Saliva plays an important role in the process of chewing food into smaller chunks that can be swallowed down. Without saliva, the process does not work. I was unable to eat many types of food, unless I took really tiny bites.
Combined with an overall rather reduced appetite, the result was that I didn’t take in enough food and started to lose weight. Now those who know me may say that losing some weight is not a bad thing at all. And yes, if I were healthy I would not mind losing a bit of excess fat. But I wasn’t healthy, and losing weight was a bad sign.
I did my best to eat as much as I could. Picking fluid and semifluid foods over solid food when possible. Trying to eat as many tiny bites of solid food as I could. My wife also stepped up; she did an amazing job of cooking fresh soup for me every day, so that I would have a fresh, well-filled soup to eat. But despite her and my efforts, it was not enough. I was simply unable to take in enough food. Especially because, as part of recovering from the dip, my body needed more food than normal, not less.
Eventually the dietician decided that the best solution was to stick a tube through my nose and into my stomach, and use that to tube feed me. Hearing that was one of the biggest reliefs I have recently experienced. I had not even realized how much energy, mental and physical, I spent every day in my fight to eat enough – until I heard those magic words and realized I no longer needed to care, I could just eat as little or as much as my body would take without having to fight it because the tube would give me all the calories I needed. All of a sudden that fight to eat sufficient was over, and I felt myself relax.
Crawling out of the dip
Eventually I started to recover. The bacteria were under control, I no longer needed antibiotics. My blood values slowly recovered. I was less tired, although I did not really notice that at first – at one point just laying in bed and doing nothing becomes a sort of a habit and I may have remained in bed longer than needed. But eventually the day came that I decided to get out of my pajamas and into proper clothes again. And then I spent maybe an hour or two out of bed, sitting behind the laptop, catching up on mails.
And that was just the start. Over the days I got more and more energy, and was able to spend more time out of bed. I picked up my habit of taking short walks when I had the time and energy again. I felt a little better every day.
On, if I recall correctly, October 10th, I had an important appointment with the doctors. Based on my blood values, they would decide whether the first treatment had been sufficiently successful that I could be allowed a week away from the hospital, to recover more fully in my own home, before returning to the hospital for chemo; or whether they would have to start the second round of treatment immediately.
The news was good. I was told that they wanted to keep me until Wednesday, October 12th, for a bit more observation and for a last check of the slowly healing wound on my buttock, but on Wednesday I would be released.
And that brings me to today. It’s now Wednesday October 19th, one week after my release, and my last full day at home. I have really enjoyed this period outside of the hospital. Even when I was often tired. Even when I had the hassle of having to tie myself up to the feeding tube for 12 hours per day – so typically at night; I hook it up in the evening and the food bag is empty in the morning. Even when I have to live according to many strict restrictions. With all of those limitations, I am still happy to be home.
But that will end tomorrow. Tomorrow I will return to the hospital, and either that day already or otherwise Friday, I will start my next round of chemo.
Will I write about that? Yes, I do plan to. When? Frankly, after the previous experience, I am going to go with “no idea – whenever I am ready to write