Ten Years Just Around the Corner!
As I write this, I am just a few months away from the ten-year anniversary of my multiple myeloma diagnosis. Suffice it to say, I am pretty darn excited about this. I just hung up the phone with my primary oncologist and we talked about how fortunate I was that he just happened to be the doctor on duty when I was hospitalized in April 2011 for severe anemia and failing kidneys. No one had been able to diagnosis me for the preceding three months and I was getting sicker and sicker while the disease was gaining more and more strength.
It made that first year following my diagnosis very challenging in terms of getting traction with any treatment. Eventually, my primary sent me to a myeloma specialist, who came up with a custom drug cocktail that stabilized my disease and saved my kidneys and my life. Oh, I did remind my oncologist on our call this morning that he was fortunate to have me as one of his first, if not his first, myeloma patients. Look at all he learned from me.
I never expected to make it to ten years
In all seriousness, I absolutely never expected to make it to five years, let alone ten. Five was actually my initial goal at diagnosis. I read an article in Cure Magazine recently that said to celebrate all cancer anniversaries. I wholeheartedly agree. Every year, my wife and I try to do something special on May 2 to acknowledge that fateful day. This year, I’m not sure what we will or can do to celebrate given COVID-19, but we will find out a way to acknowledge the achievement. I can say that I am doing a virtual 10k to raise funds for my specialist’s non-profit research group, The Institute of Myeloma and Bone Cancer Research. I’m excited to do the event and we’re trying to make it fun and easy for all participants.
I love both my primary oncologist and myeloma specialist. They have very different personalities, but both are so smart and so caring. The challenging/frustrating thing about myeloma is that it never really goes away. Just when you think it is under control, it can rise up and show its angry side again. I’ve done five different treatment regimens in my ten years. I’ve been on my current regimen for over four years and it’s the best drug mix I’ve been on. My numbers look great and I feel great. Last summer, I was worried that perhaps the disease was strengthening. I was tired and achy all the time. But my numbers looked good, so my Dr sent me to rheumatologist. Many tests and a few weeks of worry later, we determined that what I needed was to exercise more and take an antidepressant. That combo has helped me tremendously.
Braving a bone marrow biopsy
In December at an in-person visit with my specialist, he remarked how there was no detectable disease in my blood or urine. He said he’d like to do a bone marrow biopsy to see how things looked in my marrow. This surprised me, given he never wanted to do one before, given we wouldn’t be changing my treatment even if there was no detectable disease in my marrow. Nonetheless, we did the biopsy in his office. It wasn’t bad.
On the first night of Hannukah, which was celebrated virtually with my family, just as my wife and I were about to light the first candle, my doctor called me. It was about 7 PM, so him calling me scared the heck out of me. But he was so excited to share the results from my biopsy, that he couldn’t wait to call. No detectable disease in my marrow. Complete response. Wow. That’s a first in the ten years I’ve been dealing with myeloma. But we continue on with my treatment; a monthly immunotherapy infusion, oral chemo, and steroids. Nothing has changed. I should note that most of my life, I’ve lit the Hannukah candles without truly knowing the meaning. For this most recent holiday, I learned a bit more about the tradition, and my doctor calling me with the good news when he did, felt like a true Hannukah miracle.
Grateful every day for good fortune
And I should also say that, yes, my treatment hasn’t changed. However, my mental state and how I view my disease have changed. I can relax a bit when I do my monthly labs. I feel like anything is possible now in terms of how long I can live with myeloma. And I feel like celebrating not just milestones but also trying to be grateful every day for good fortune. I can’t believe how I made it to ten years. What a ride. I know there will be days where I am tired or sore or irritable. But as long as there is some pattern or rhythm to it all, I’ll manage it.
Cheers everyone and many thanks for taking an interest in what I have to say. Stay well, stay safe.
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