And then I got Leukemia

Life has its share of surprises. Being diagnosed with Leukemia in 2021 was one of the biggest in my life.

I got sick just before returning to the US from Japan in October 2020. At the time, I thought it was a cold. I got sick again in November with similar symptoms. That’s unusual for me, but I couldn’t see serious cause for alarm. Then I got sick in December and stayed that way. Something was very much wrong with me.

It took a while for doctors to sort the underlying cause of all my maladies. Leukemia kind of lurks in the background and the weakened immune system it causes can lead to other issues that create symptoms that mislead the doctors. At the same time, doctors also discovered multiple growths in my Thyroid when doing X-rays looking for embolisms in my lungs. It felt like being on an episode of House.

Eventually, my doctor’s mentor noticed there were a lot of suspicious white blood cells in my tests, along with the very low white and red blood cell counts. He suspected Leukemia and suggested I go to the ER immediately. Leukemia was not on the menu of diseases I’d been suspicious of, but when I read the symptoms it was a dead-on match for what had been happening to me, especially when paired with random infections caused by a dramatically weakened immune system.

It took 5 long days in the hospital to finally get my diagnosis. I was tested for a slew of immune deficiency diseases as well as thyroid function and many other prospects, but in the end, my doctor’s mentor had the right suspicion. A bone marrow biopsy came back positive for Acute Myeloid Leukemia (AML).

What is AML?

I got a crash course in answering this question. Acute Myeloid Leukemia is basically a blood/bone cancer. Myeloid is the tissue that is cancerous. It’s basically your bone marrow. In the case of Leukemia, it is a line of cells that create your white blood cells which have mutated. Instead of making useful white blood cells to fight disease, they make a bunch of useless idiot white blood cells that do little other than breed madly, die, and make a mess of your myeloid tissue which crowds out all the other types of blood cells in the process.

I liked to use the analogy of a massive drunken toga party going on in my bone marrow and the bastards just won’t leave. The Acute part of the diagnosis means all this is going on at a very rapid pace. The disease can kill you in various ways. The lack of functional white blood cells leaves you vulnerable to infections of every sort, including all the normal germs in and on your body. The lack of red blood cells eventually leads to massive organ failures all over your body. The lack of platelet cells leads to spontaneous bleeding.

The survival rate on AML is depressing, around 26% of AML patients survive 5 years after diagnosis. That is partly because the majority of its victims are over the age of 70 and a good many go undiagnosed and untreated. It also strikes very young kids, but they have a much higher chance to make it through, about 68%. It’s quite unusual for someone my age to be diagnosed with AML so my odds by age were actually hard to find. That was fine by me as knowing the odds doesn’t change your outcome.

Treatment for AML is almost always Chemotherapy, and often also involves a bone marrow transplant. Chemotherapy is basically a process of introducing chemicals into the body that kill the cancer cells. These chemicals are most effective at killing cells undergoing rapid division. Mine also involved drugs that more or less turbocharge your Mylooid white blood cell production. That sounds like a bad idea as they are the cancerous culprits, but it makes them even more apt to die from the poisons.

Typically you get a round of chemotherapy over the course of 5-7 days, then you spend a week or so getting weaker from it, and finally a couple of weeks recovering from it. You repeat that about 6 more times and finish off with a bone marrow transplant. If all that works, you want and see if it comes back. If it doesn’t work, you go for another series of Chemo treatments.

Hello Mortality

Once we got the hint that I could have AML I stopped hemming and hawing about medical expenses and went directly to the ER to check myself into the hospital. Once I was diagnosed there was no doubt in my mind as to what to do next, I wanted whatever was the recommended treatment. I’ve got my gripes with the US medical system and aspects of modern health care, but fundamentally I trust empirical science and western medical treatment.

Some time ago, I made a promise to my wife that I’d outlive her. I can handle losing her better than she can handle losing me. I’ve also got plenty of friends and family that would like me to stick around. I very much don’t want to cause them pain. And finally, I feel like I’ve still got useful things to do, both experiences I’d like to have and work I can do for others. So whatever it takes to cling to living, that’s what I’ll do.

That said, I more or less made peace with my mortality sometime prior in my life. I lived a great life so far, and if my time comes, so be it. So I didn’t exactly feel afraid, but I was taking the situation seriously. I felt like if there was anything I really felt I needed to do before I die, I should get that done sooner rather than later. Lucky for me, there wasn’t much on that agenda beyond reaching out to people I cared about to let them know what was happening.

Honestly, I was far too sick for anything more exciting than writing emails and Facebook posts.

Making it a public affair

I live a fairly public life. I’ve always felt compelled to share what I know and to share dramatic stories of my life. Partly I think it’s just a social instinct to spread information, but it’s partly that I enjoy the feeling of connection it gives me.

Over the years of being this way, I’ve found others get value from it. People have told me about how one or another thing I did had inspired them and changed their life for the better. Little things I’d never expect to matter made other people’s lives better. It’s a great feeling so I’ve kept up with the idea that the more I put out, the more I help.

So I made my illness public pretty quickly and shared the lion’s share of what was going on through the whole process. I’m really glad I made this choice because the amount of love and support I got from people was astounding. I expected kindness, but honestly, the things people did for me and said to me was overwhelming.

A deep feeling of gratitude, good fortune, and fulfillment brought me to tears a few times during my treatment, especially early on when I was surprised by just how kind people were. Strangely, they were among the happiest moments of my life rather than the most frightening.

The Treatment Process

Going into my first chemotherapy session, I knew this was a long haul process. The minimum time from stem to stern is 6 months. If things didn’t go well, it could be much longer. I took on the “whatever it takes” and the “I’ll make the best of it” mantras so far as I could take them. I honestly have no serious complaints about my treatment. Not everything was perfect, but my expectations are not for perfection.

The hardest time’s for me were time spent in the hospital. The time spent getting diagnosed was a pseudo nightmare of being stabbed with needles, scanned with machines, and hardly ever getting any sleep despite being exhausted at all times. My first Chemo treatment was preceded by an infection that landed me in the ER again, and my health was in absolute shambles at that point requiring constant blood infusions and antibiotics. I felt pretty decent by the time that stay was over, but infections sent me back in not long after that. I was starting to recover a bit by then, but I was getting really tired of being in the hospital, and my back was starting to hurt terribly from the hospital bed.

Fortunately, the chemotherapy really wasn’t that bad. I suffered few of the typical side effects from chemo. I never got nauseous or lost my appetite, or found that food tasted any differently. I actually got pretty fat during my treatment as the doctor’s recommendations were to eat as much as you can tolerate, the more nutrition the better. That said, every session wiped out my blood cell production entirely, which is its primary goal, not a side effect. Basically, it does in a week what Leukemia takes a few months to achieve. Lucky for me, I recovered each time.

My recovery after the initial treatment felt damned near miraculous. My blood counts actually rocketed back up after hitting rock bottom. I felt almost like my old self again. That said, I was slower to recover after every successive treatment, and for the last two, they had to scale back the level of Chemotherapy I was getting. There is only so much you can recover from and I was reaching my limits.

Despite not having many side effects from chemo, I had my share of overall complications. To get Chemo you need a “line” of some kind installed. It’s basically a set of plastic tubes inserted in one of your veins such that they empty out right next to your heart. This allows you to get the poison directly into circulation. Usually, you get one of these, but I kept having problems with mine and had three over the course of my treatment, one in each arm and a final line in my chest. The first line sort of squeezed out of my arm. The second one developed a dangerous blood clot, and the chest line was always threatening an infection.

There are also quite a few medications you end up taking, either as part of the chemotherapy or due to the complications that come up over the course of treatment. The chemo plus all the other meds put a pretty big load on my kidneys which were showing a lot of signs of stress in my bloodwork. I was constantly asked to “drink more water” but honestly, there is only so much water a person can drink comfortably and no matter what I drank, my kidneys were still showing signs of stress. For me, this was the most frustrating part of my therapy experience.

I plan to write some detailed articles about my treatment for the benefit of other new pateints or those curious about the nitty gritty of it. Just search for Leukemia on the site to look for related articles.

All is well that ends well

After my first round of treatment, my blood work was looking good, but the real test is a bone marrow biopsy. This is how they conclusively diagnosed my cancer in the first place, and it’s the best way to measure how successful the treatment is. I was quite excited to see the results. I’d been feeling great after the first treatment but this was the moment of truth.

Lucky for me, it came back negative. I’d been told early in my diagnosis that my particular type of Leukemia has the advantage of being easy to detect. That means they can be pretty sure if they don’t see it, that it really is gone. They use the word “remission” since cancer, especially Leukemia, is good at surviving in some remote part of your body, ready to make a comeback when the coast is clear. But I was declared in full remission after my test, which is as good as it gets in the cancer treatment game. They were confident enough that they felt a bone marrow transplant would not be necessary or even especially helpful. Lucky me!

As I write this, I’ve finished the last of my treatments and my blood numbers are getting very close to a normal healthy range. The year after treatment is still a somewhat risky time, but I feel fairly confident the treatment has done its job and the obnoxious toga party cells are good and dead.

I’m pretty eager to say this is an event in my past, but it’s not one I feel sad about. It sucked, but it was also sort of an adventure. I’ve always kind of aspired to live the life of a hero and a hero is going to have hardships and trials in life. I never go looking for them, but in some ways, I do relish them as a chance to prove my resolve.

Thank you, thank you, thank you

I’m grateful to have survived and grateful for all the help I had doing it. I would literally be dead were it not for modern medicine and all the people who took care of me directly, and all those who developed the medicine that was used. The same goes for the people who gave the blood I so often received. I could have never afforded this care but for the Medicaid system in the US and Washington State. Otherwise, I’d be looking at a bill of more than $950,000.00. And while it maybe wasn’t the difference between life and death, the material and emotional support of my friends and family made an otherwise horrible experience into a sometimes overwhelmingly joyful one.

And I can’t praise anyone without praising my dear wife Anne. She had to not only take care of me constantly (which she did with aplomb) but she had to deal with the fear of losing her husband, financial uncertainty, and the overall stress of this situation. Being the spouse of a cancer patient is a real test of love and commitment in a way that is hard to understand until you have experienced it.

I’ve gotten a lot of praise for being tough, strong, inspirational, and so on during all this. That may be true, and I love hearing it, but my life truly lay in the hands of others during this trial. The real heroes of this story are everyone but me. So with all my heart: Thank You!

Sigfried

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