Cancer is Not What You Think
Before May 2, 2011, cancer was a giant mystery to me. I can't recall anyone in my family having cancer. My impression of cancer was very simple; you either beat it or you don't. I suppose that is sort of accurate.
But I also thought that going into remission or not, happened in about one year. When diagnosed, I assumed I'd lose all my hair and would be sick all the time.
Not all cancers are the same
I also thought all cancers were the same. Cancer is cancer and that's it. Friends or coworkers or family would tell me anecdotes of someone they knew who had survived cancer, any kind of cancer, who had gone on to complete amazing feats. I'd smile and say thanks, uplifted by these tales.
To sum it up, my misguided impression of cancer came from tv or movies.
Multiple myeloma is not what I thought
I recently hit 11 years since my multiple myeloma diagnosis and it's been nothing like what I thought it would be.
Have I beaten it? I suppose I have. But I still have it. I've been doing treatment non-stop since the day after diagnosis.
I've relapsed, become refractory, had failed treatments, or changed treatments a number of times. Back in 2014, I went through a two-month period where I'd throw up every night, but that's the only time. I never had a transplant. I never lost my hair. Well, my body hair is no more. But the hair on my head has continued to grow.
Beating cancer, but still in treatment
I honestly had no idea someone could be in active treatment for this long. And I now know fellow myeloma patients who have been in active treatment for over 20 years. Mind blown.
People rarely tell me survival stories of someone they knew who had cancer anymore. Good thing, because I don't think I'd take kindly to these irrelevant and not helpful stories. All cancers are different.
And on top of that, how one person reacts to a treatment is totally different than someone else. There is no gold standard of treatment for many cancers, including myeloma, and that is pretty frustrating.
Long term effects impact life
In fact, a lot is frustrating about my myeloma journey. I'm doing well physically...in the big picture way. But steroids have destroyed my skin, weakened my bones, damaged muscles, and impacted my vision.
And don't get me started on my mental and emotional state. On any given day, things in my head can be pretty fragile. I'm trying to discuss this more and be open with people about my struggles. No one told me about this aspect of cancer. I'm worn out. And did I mention anger and bitterness?
Doing the best I can
Don't get me wrong, I'm grateful to be alive and to be doing as well as I am. But, what the heck, am I embracing life and celebrating every day...like I assumed cancer patients do? Not particularly. I'm waking up, paying bills, dealing with family, taking naps, and so on and so on. Fairly mundane things. That's all good...true. But maddening as well.
What's interesting is in some ways I don't even recognize myself.
This disease has changed me immensely. Again...mostly a good thing. For example, I'm more empathetic, giving, and appreciative of the birds in my yard. But who have I become? I miss the old Matt, but then again I don't.
What does remission mean to you?
Do you worry about relapse?