January 16, 2020
Three weeks ago I found myself lying in a hospital bed after a full day in the ER, a blood transfusion dripping into one of my IVs, listening to a doctor tell me I have Acute Myeloid Leukemia. Just that morning I thought I was just getting over a bad case of the flu. I mean, I’m 28 years old. I’m healthy. I can’t have cancer, can I? I really wasn’t in a good state that night anyway, but even so, the news hit me like a truck. I would be lying if I didn’t say I was scared shitless.
So how did I end up in that hospital bed? It started with a basic cold and a little fever. For four days I felt slightly feverish but the Friday night before Christmas things got a lot worse. I thought I had the flu and the best remedy would be for me to spend the weekend in bed drinking water and sleeping. I honestly didn’t leave my bed until Monday night when we went to urgent care. I was given some basic antibiotics and sent back to bed. I again assumed the best and thought everything would just go away.
Over Christmas I would spike a fever a few times a day, I had some sort of infection happening in the gums behind my teeth, and I would almost faint every time I got up to get water or go to the bathroom. All of these things I attributed to a really bad flu. But this flu had been going on now for almost a week and a half and even with the antibiotics, it wasn’t getting any better. The final straw was when my vision started to get blurry in my left eye. At that point, it was time to go back into the doctor.
My wife and I, still assuming this was some sort of infection/virus, headed to an urgent care hoping to get something stronger to combat whatever was going on. After hearing about my symptoms the doctor immediately sent us to the ER. I guess now I know more about what constitutes an ER visit vs an urgent care visit. They drew some blood to give us a head start at the ER and then we drove to the one they recommended. We ended up being super lucky that they sent us to Methodist hospital. It’s pretty close to our house, in between our parents’ houses, and they also happen to specialize in oncology. At the time we weren’t thinking about any of these things.
They were waiting for me at the ER, which was great because I was barely standing on two feet. To be honest, I was pretty out of it and loopy most of the day. I’m surprised I remember as much as I do. A nurse led me straight to a room and began the process of getting me checked in. A doctor to come in pretty quick and told us that my blood counts (hemoglobin, white blood cells, platelets) were all super low. She also threw out the word leukemia right away just so we could have some warning of what this could be. Of course, I thought there was no way I could have leukemia. It had to just be a bad virus. The doctor said at the least I would be spending the weekend in the hospital to run more tests and monitor my health. Again, I still just thought this was some bad flu. I didn’t even really know what leukemia was.
That day was filled with an MRI, CT scan, bone marrow biopsy, and more blood draws than I could count. My arm was bruised and filled with needle holes. Seriously, if one more person tried to draw blood that day I think I would have punched them. Rachel tells me I started to get pretty delirious towards the end of the day and I was feeling it. They told me I would need blood and platelet transfusions but after all the tests I was left sitting in the ER room waiting for a room to open in the hospital so I could be admitted.
As soon as we got upstairs my doctor came in to tell us the news. The results from the bone marrow biopsy determined that I had Acute Myeloid Leukemia (AML) and we would need to begin treatment right away. I had a very vague idea of what leukemia was but I learned a lot pretty fast. This leukemia had probably not been in my body more than a few weeks before I was admitted to the hospital. It being acute meant that it was a fast-moving disease and needed immediate treatment, which is why I had been admitted to the hospital that same day. This was all just a big shock, a huge roadblock to the life I thought I would be living this year. I had so many plans and even just small daily routines that had just come to an end.
Thankfully I received three units of blood that night and 2 of platelets. In the morning I was looking a lot less like death and felt a lot better too. If you’ve ever donated blood I thank you. You probably saved my life that night and have given me the chance to fight this disease. Even though I was more alive feeling over those next couple days, I could feel the weight of the news I heard that night. I still don’t think it’s real sometimes. I know there is a real chance I don’t make it through this. I think it’s more likely that I will, but still the reality of that is impossible to escape. It especially was those first couple days. Thankfully things just started moving. It helped that we were admitted right away, taken care of, nursed back to health, and told that chemo would be starting in a few days. It gave me a sense that it was as simple as: there is something wrong and we have to do something about it.
The treatment, as far as this first month goes, is fairly straightforward. I would be put on a chemo treatment called 7 + 3. Seven days of a constant chemo drip and three days of a single push of a different kind of chemo. Then I would wait for three weeks to let the chemo do its work and then let my body rebuild my immune system a bit. I would remain in the hospital for that entire month and at the time little else was known about the future beyond the hospital. Since then I’ve learned that there will be two options after the first month in the hospital. One is a stem cell transplant and the other would be 3-4 rounds of consolidation chemo. Consolidation is necessary because even if we get the leukemia into remission at the end of the month, it has such a high likelihood of returning that further treatment is needed to bash it into the ground. The transplant could come from another adult or umbilical cord blood. It would be a pretty sure way that the leukemia cells wouldn’t return, but there are some pretty big risks with going that direction. There are risks with further rounds of chemo as well, so the choices are gonna be difficult and there is no clear winner.
This month so far has been pretty good health wise. I’ve handled the chemo better than expected. The nausea was manageable and the worst I went through was just extreme exhaustion. I consider myself very lucky in that regard. Maybe things will just go smoothly and I’ll beat the shit out of this cancer. On my best days, it’s easy to believe this narrative. Some days though I allow my mind to wander into a pit of despair and think that I’ll never make it out of this simply because this crazy rare bad news has already happened to me. I’ve already rolled the 15,000 sided die and rolled a 1, so why would there be any reason to get out of it. A DND character doesn’t get to get out of it, why should I. (Although if I was a halfling I could totally reroll the 1.) Thankfully with all the support from friends and family I’ve received, I don’t often have these thoughts. The treatments are working so far and I’m young. Did you know the average age for adult AML is 68? Not saying that age is everything but it definitely gives me a good shot at handling the therapies.
I had a bone marrow biopsy this week to make sure the chemo had fully wiped out the leukemia cells and it had. That was a reason to celebrate. Barring something really weird my bone marrow cells should be starting to regrow and bring my immune system back into action if only a little bit. Let the record show, I am not a fan of bone marrow biopsies. They are really only painful during the numbing phase but they feel and sound really weird. It’s not a pleasant experience.
We’ve learned that my immune system won’t be back to normal for maybe a year. Which means I won’t be able to attend crowded events or even busy restaurants. I’ll have to wait quite a while before I eat sushi even if everything goes well. And there will be many hard decisions in the future. For now, we wait for counts to come up so I can get out of the hospital. To be able to relax at home will be a huge comfort. I can’t wait for that day.
For now, I find myself spending a lot of time sitting in bed or the chair and walking to try to keep my muscles working. I’m listening to books on tape and writing this blog post. I’ve seen so many good friends and family members who have come to visit me, which makes the time go fast. I appreciate all the support we’ve been given so far and all the support I’m sure we will need in the months to come. I will continue to write my story here even if no one reads it. I find it cathartic to write my own thoughts publicly and share my feelings. If you’ve made it this far, congrats! Tweet at me if you have any questions or just want to reach out for any reason.
Thanks for reading.
Written by Matt Gregg, a UI engineer who lives and works in Minneapolis, MN
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