Big C Update

I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.

Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.

I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
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P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.

Another Results Day

Good news to share. My blood tests were fine and the skeletal survey showed no lesions. My oncologist said the disease could remain indolent for years. I will still need a set of blood tests every 2 months, another set every 4, and another skeletal survey in a year. Should things change I will start treatment, which will most likely be a stem cell transplant. Although I am relieved,  am also very aware the disease could progress at any time. And that begs the question…

I wonder what flips the switch from having an indolent myeloma to needing treatment? What triggers this progression? How does my body “know” keep this disease dormant? According to my oncologist, I cannot control the disease’s progression and should just live a normal life. However, I am not convinced the disease is beyond my control. 

My strategy – thinking positive, lowering stress, making better food choices (something I struggle with), taking vitamin D and curcumin supplements, and “willing” my body to kill the myeloma cells. The former might sound goofy, but hey, it’s free and can’t do any harm. Besides, when dealing with a disease that at times makes me feel helpless, it’s empowering, and somewhat similar to meditation. Since I have very high iron levels, I’ve been advised to skip multivitamins. He’s still unsure of what’s causing the retention of iron, but believes it’s due to the myeloma.

Thanks to all of you for your kind emails, and to fellow MM patients, keep on fighting. More effective therapies are just around the corner.