This past week marked my 17th year of living with Multiple Myeloma. I was diagnosed on June 15, 2005. But it’s clear that when I initially had the compression fracture of T 10 in November of 2003, Myeloma probably had been roaming around my body for a couple of years. But by the time of diagnosis, it was now a plasmacytoma on T 10. So that’s almost a year and a half from when I had the fracture. The course of treatment was 17 rounds of radiation, followed by 6 months of chemo every 3 weeks. Induction treatments now include Revlimid and Velcade which wasn’t available at my time of diagnosis. I had Doxil, Vincristine, Cytoxan, and dexamethasone. After that, it was preparation for the STC. I had the SCT in March of 2006.
I think part of the shock for me was, that I’d never really ever been sick, nor did I hardly ever use traditional medicine( since I was never really ill). Even at the time of diagnosis, my compression fracture was healing to some degree and I was not anemic, a common symptom of myeloma. In fact then and even now my CBC panel and CMP panel are all normal. But add in a light chain test and Spep test and there you go. At diagnosis, my SPEP was at 3.9. Not terribly high but high enough.
All of this was certainly foreign to me and I felt like a ‘stranger on a strange planet’. The first time I entered the chemo room, I cried. It truly was bizarre to see so many chemo Iv’s and patients ‘hooked’ up. After a time I did better and came to appreciate the hard work of the chemo nurses. Even now, last year going down to Rocklin Infusion, the nurses are just the best and it takes a special person to be a chemo nurse.
The first year was the hardest. The Stem Cell Transplant was one of the hardest things I’ve ever gone thru. Some people sail the SCT, but I was pretty miserable. I couldn’t eat( I had to get 1 insure down a day), I had constant diarrhea, and just was barely conscious. But I did get thru it and it took almost a year to recover. But I did. I was stronger and wiser.
So what have I learned?
First, take each day as it comes. We really only have this moment and how we live in that moment takes us to the next moment. I still try to gauge how I feel each day and what I need to do that day or not.
Second, I learned to be more patient. There’s a time for all things and you can’t push time. So when I was in the midst of appts, treatments, etc, there was no rushing or trying to do something before it was time to do it( if that makes sense).
Thirdly, your blood is your blood, and the same with facts. The numbers are the numbers and you can wish, scream, pray, jump up and down but it won’t change a thing. Your blood is your blood. So, of course, be positive but no imaginary person in the sky is going to help you. It might make you feel better for doing it (the praying part) but it’s not going to change your blood or take away the tumors or whatever. This is not to say be reckless, or eat junk food( only occasionally:) ) or whatever but be sensible, eat healthy things and try and do some exercise even if it’s just walking.
Four, around five years into my journey, I started becoming more minimalist. As I’ve mentioned before, I had 4 great years with no treatment and my cancer was in remission. But myeloma just doesn’t go ‘away’. There are always some rogue cells and then you relapse. Flylady jump-started my decluttering and doing a daily ‘tidy up’. I started always having a clean counter and sink. And it really does work.
Fith, it is what it is. Always.
Becoming minimal really changed, although slowly, how I felt about everything. Money, bills, life, buying things, not buying things. and so much more.
When there’s always the “what if, when??”, it’s very hard not to obsess. Early on in this journey, I got a prescription for anti-anxiety medicine. It was a life saver. I stopped obsessing over everything. So, I suppose that obsessing taught me to not worry about what was going to happen but just BE with it. Although in truth, I needed the anti-anxiety medicine just to cope. Now, I don’t and figure, it is what it is.
In some ways, living with incurable cancer, it’s always there somewhere lurking in your mind. ( and unfortunately)in your body. You just have to acknowledge it and get on with living.
Since 2005, I relapsed in 2010, 2015, and 2019. Each time I’ve been lucky the treatments have worked although I suspect each time between relapses will lessen. That’s ok. It’s not my first rodeo.
To quote Mary Oliver:
“Tell me, what is it you plan to do with your one wild and precious life?” — Mary Oliver, The Summer Day
and this one…
“Instructions for living a life.
Tell about it.”
― Mary Oliver, Sometimes
4 thoughts on “How I learned to live with an incurable cancer.”
Just wanted to say Thank You. I like reading your blog, the minimalism thing was how I found it. All the best for you! Regards from Germany. Greta
Hi Greta, yes, cancer did lead me to minimalism. It was quite the journey.
Thank you for sharing your experience and journey with us. I had a very serious illness in almost 18 years ago that led me to have to consider at age 55 if I would be housebound for the rest of my life. I recovered fully but no one knew what would be the outcome at the time of the illness. It certainly changes your perspective and you have done an amazing job of focusing on life.
Thanks, Juhli, having any illness that impacts your life is tough, and you are so right about it changing one’s perspective.