If you’re new here, this is probably the best place to begin.
I was diagnosed with mycosis fungoides in the spring of 2024, but the story goes back much further than that. I had been showing symptoms for about 15 years before anyone knew what they actually were. Mycosis fungoides is a type of cutaneous T-cell lymphoma, and one of the reasons it can take so long to diagnose is that it often looks like something much more ordinary. In my case, we thought I had eczema.
For years, it really wasn’t much more than discolored patches of skin. It didn’t hurt, it didn’t particularly bother me, and there was never much reason to think it was anything serious. Because of that, we never investigated it very deeply. It was simply one of those things that was there.
That changed when the skin started breaking open and turning into actual wounds. At that point, it became obvious that something more was going on, and eventually I was diagnosed with mycosis fungoides.
The treatment so far
Despite having a cancer diagnosis, most of my treatment up to this point has not really been directed at the cancer itself. I was treated with methotrexate along with other medications and anti-inflammatory treatments aimed largely at controlling the skin symptoms. The goal was to calm things down and keep the disease manageable rather than directly attack the lymphoma.
Unfortunately, methotrexate was extremely hard on me.
I spent much of the last couple of years feeling very sick. Eating became difficult, particularly solid food, and I honestly cannot remember the last time I regularly sat down and ate normal meals without having to think about whether I would be able to keep them down. These days, a large part of my diet consists of meal replacement drinks because they are one of the few things I can usually tolerate.
Ironically, instead of losing weight through all of this, I have gained it. Cancer treatment does not always look the way people expect it to.
I am okay, and I am also very ill. Both of those things can be true at the same time.
Now we are treating the cancer itself
The disease has become more aggressive, and my treatment is changing with it.
Mogamulizumab
On September 23, 2026, I begin treatment with mogamulizumab, an immunotherapy used specifically for mycosis fungoides and Sézary syndrome.
The way it was explained to me is fairly straightforward. Mycosis fungoides is a cancer of T cells, which are part of the immune system. Mogamulizumab attaches itself to certain T cells and helps trigger an immune response against them.
That distinction means a great deal to me. For the first time since I was diagnosed, I feel as though we are doing something very concrete about the cancer instead of mainly trying to manage what it is doing to my skin.
I know that does not mean the treatment will be easy. It is expected to last at least a year, and there will almost certainly be difficult days ahead. Still, I am hopeful because we are finally attacking the disease itself.
Where I am now
My current situation is a strange one to describe because I am okay, but I am also very ill. I am not lying in bed believing that I am dying, but I am exhausted from being sick for so long. The last couple of years have taken a great deal out of me physically and mentally, and there are parts of my life that have become much smaller simply because I have not had the strength or energy for them.
Why I started The Cancer Years
I wanted somewhere to tell the story as it actually happens, without trying to turn it into something inspirational and without pretending that I have some grand lesson to teach anyone. I am not doing this to sell anything, build a business, or turn cancer into a brand. I am writing because this is what my life looks like right now, and because writing is one of the ways I make sense of things.
Some posts will be about treatment. Some will be about side effects or appointments. Some will probably have very little to do with medicine and a great deal to do with what happens to the rest of your life when being sick becomes part of your everyday routine.
I also want to go back and fill in some of the years before the diagnosis, because this story did not begin in 2024. It began long before I knew I had cancer.
This site will not always be chronological. Sometimes I will write about what happened that day. Sometimes I will go back years. Sometimes I will write about something I have been thinking about for months and finally decided to put into words.
If you found your way here
If you have the same disease, another type of cancer, or you are caring for somebody who does, you may recognize some of what I write here. If you have never dealt with cancer at all, perhaps this will give you a better idea of what happens outside the appointments and treatment rooms.
I am not a doctor, and nothing here should be treated as medical advice. This is simply my experience.
For now, this is where the story stands. I was diagnosed in the spring of 2024 after roughly 15 years of symptoms. I have spent the last couple of years trying to manage the disease and dealing with the effects of methotrexate. On September 23, I begin immunotherapy with mogamulizumab.
For the first time, it feels like we are no longer just dealing with the consequences of the cancer. We are going after it.