First off, don't worry; my health is fine. Relax and take a calming breath with me (not a deep one for me, thanks, the smoke from the wildfires raging across the Northwest are currently wreaking havoc on our air quality).
When last I wrote I was feeling better every day and my blood numbers were continuing to steadily improve after my autologous stem cell transplant. Twenty months later many things have changed, as those of you who are Facebook friends know. I have a beautiful granddaughter Bailey who just turned one and a kick-ass, loving, creative grandson Reed who at age three is already a drummer and biking the tough route at the indoor bike park in Portland. Kristi and I love them very, very, very much. We get to see them once a week or so outdoors and let them play in the sprinkler, wade in the little pool, water the garden and hunt for wild strawberries and blackberries in the meadow and along the road. Reed has told me twice, "Ja?" "What, Reed?" "I love it here". Each time, it made my day.
My wonderful Uncle Tom died at the end of January at age 94. We had a close, though sporadic, and very fun relationship. We backpacked, hiked, skied and wine tasted together many times. He told me to take a job at Mammoth Mountain ski area in 1973, which led me to meet Kristi. I owed him so much thanks and was glad I could tell it to him (again) the year before he died. When he died a bachelor, my brother and I received a large inheritance, so I can worry less about our financial future; which is a huge blessing and actually was one of my biggest concerns when I got my cancer diagnosis. I feel blessed in yet another way.
In many ways, 2020 has been a remarkably good year for us; which is incredibly weird to say, given how terrible this year's been for so many people. It's not all roses. The awful toll of the Coronavirus pandemic both physically and financially to so many people we know and the horrible wildfires raging in the West, coupled with the intensely harmful actions of the Trump administration and the US Senate to people and the environment have left me sad, angry, frustrated and exhausted.
But, being me, I look for hope, fun, kindness and beauty every day too. Which leads me to the purpose of this missive, to help myself, and you, to understand what it's been like to have gone through my journey with Multiple Myeloma thus far, what's changed in me as a result and share with you the new insight I was given last week about my prognosis for the future.
First off, remember this; Multiple Myeloma is still incurable cancer. It's very treatable. I'm a testimony to that. If I'd gotten this disease thirty years ago I'd be dead and would never have met Bailey Bettinger. The thought of that alone makes my eyes well up with tears. But it's likely the thing that will kill me eventually.
But as I said, I'm feeling good these days. Been hiking with Kristi regularly up in the Cascades. Lately we've been hiking up in the Indian Heaven Wilderness on or near the Pacific Crest Trail and eating a lot of wild huckleberries. Alas, no hiking for awhile until the fires are contained and die down and the awful smoke dissipates. We've also started biking again. So far we've biked about 30 miles of the roads and trails through the Columbia Gorge both ways (60 miles total). It's not nearly as much as we used to do, but we're building up stamina and toughening our butts. Not bad for a couple old coots in their late sixties.
I notice changes though. My blood pressure has always been a bit low (around 100 over 60) but I now detect light-headedness on occasion when I stand up quickly, usually when I haven't done a good job of hydrating myself. I also notice that I'm occasionally having trouble remembering names of places, people and obscure things. It always comes to me but it's a bit worrisome. It's noticeably worse in the past year or so, but doesn't seem progressive. Perhaps, as Kristi suggests, it's lingering chemo fog. I've always had a terrible long-term memory of past events - I blame marijuana in part - but that's a different thing. It may also just be because I'm 67.
The most noticeable change, and I know it's a positive one, is a greatly increased sense of empathy. I tear up easily when I hear someone describe moments of personal emotional loss, or awareness, or beauty. I still tear up and choke up when describing to someone the moment when I was rolled out of the Cancer Wing in my wheel chair with Kristi by my side and saw the nurses who cared for me through the transplant cheering my passage as I went by and out the doors.
All-in-all I've been feeling pretty cocky about my health. I'd kind of forgotten about the incurable nature of Multiple Myeloma, even though I still go in for check-ups at the oncology department every two months
I was reminded of that last week when I met with Dr. Bernstein, my great oncologist. We looked at my blood work results and he said "these look terrific. How are you feeling?" I said, "Great!" Then he said, "Okay, then this is probably a good time to discuss putting you back on low-dose chemotherapy." I said, curiously and a little nervously, "Okay, why's that?" He explained that he and his colleague had looked at my numbers and thought it was time to plan the next stage of prevention to keep me healthy for the next seven years.
I said, "So the low-dose chemo will help me continue to feel this well for the next seven years?"
He said, "No. Our objective is to keep you alive ..."
"Statistically, you have a 50 to 60% chance of being alive in seven years."
I was stunned. It was like I'd been abruptly, if gently, shaken out of a dream.
What would you do if you were told the odds were 50/50 that you'd be dead in seven years or less? By someone who actually means it... and has data to back it up...? Think about that.
Well, what I did was start paying close attention to what he had to say. It's a toss-up at this point whether I need the low-dose chemo to delay my cancer's recurrence or whether I should wait awhile before we do it. The data is unclear. Since I'd had no significant side-effects from the mutagenic chemo drug Revlamid at four-times higher doses, we decided to have me start taking it again.
He said, "There's three ways things go with Myeloma.
- The treatment doesn't work and they can't get a stem cell transplant because they're not strong enough to survive it. --I immediately thought of a neighbor's wife who was allergic to the chemo drugs and died of multiple myeloma within two years of diagnosis
- The chemo works and they get the transplant, but the myeloma was advanced enough to begin with that it comes back and we need to try new drugs. --At this point I mentioned Will, who had mentored me about what the stem cell transplant would be like, since he'd gone through it a few months before I went in. He'd been diagnosed much later than me and had a rough time with the transplant and, it turned out, his myeloma came back just a few months later. He's doing okay now, but is on other drugs. We don't get to do two transplants.
- We catch it fairly early, the chemo works well, you're vigorous enough to survive the transplant and your health returns. Then we wait and see how long before it returns. I have patients where it's a few years and others who are at 10 years and they're still going strong, but those people are very rare.
"So", he said, "you don't want to be Will. The Revlamid may help delay the return of your cancer longer or not. The data isn't conclusive with people who are doing so well. But, since you had no trouble with it before, let's go with a low dose and see how it goes."
I left the office with mask on, walked to the car and drove home distracted by my thoughts and feelings. I talked to Kristi about it that evening. As of this writing, I've not told anyone else because the stupid fires have prevented me from sharing this with Autumn in person. I'll do so before I finish writing it.
The day after Kristi and I heard this prognosis, we were standing in the kitchen making dinner when she burst into tears and began sobbing. Just standing by the counter and crying really hard. I hugged her and said nothing. After awhile she said, "I'm okay; I'm just grieving." A long pause "...Grieving for everything. You, the world, our grandkids." "I don't want you to go." All I could say was "I know. Me too."
And now I've teared up again.
What to do with this information? No amount of worry changes the future and no amount of regret changes the past. All that's left is being in the moment and remembering to savor them, I guess. I try to keep my death in mind every day now and then.
If I last a little over seven more years I'll be 75 years old. That seems like a good long run. I've crammed a lot of varied experiences into those years and remained happy with life throughout. My one real objective when I was diagnosed with cancer was for my grandson to remember me. My Dad died when Autumn was only one. She has no memory of him at all (how could she?) I don't remember anything from before age 4 really, and not much from then. Reed and I have just really begun to bond this year with our foraging expeditions.
What better objective than to be memorable in an overwhelming positive way to my family and friends for these years I've been given and to drive really carefully (and avoid climbing ladders) in the meantime so I don't completely screw up this gift of years ahead of me.
I'm not sure if I'll keep writing here. It's good to be introspective sometimes in a more organized way. As I learn more about this, I'll certainly share it.
The Revlamid arrived today. I'll start taking it tomorrow and, as a result, once a month I'll promise a nurse in the Southeast US that I won't have unprotected sex with a woman who has a womb.
Before I finish up, I wanted to send a message to three dear friends who are contending with cancer now. One has had surgery and the other two some much tougher treatments than I went through. Sherrie, Bobby and Mark, my love and hopes and caring wishes are beaming out your way. I know you're all loved and well cared for, and you're still full of life, love and humor. I miss you each and all and hope our paths can cross again soon.
To all the rest of you, thanks for being there with me as I went through the cancer diagnosis and the transplant. Your love and friendship keep me buoyant. Be well, do good deeds, get grounded out in someplace wild and vote for a caring, sustaining future. Let's make 2021 hopeful and memorable in a way that doesn't involve too much flames, smoke, hurricanes, flooding. and pandemic deaths.
With love and a bemused smile,
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