Today is a milestone: it's been ten years since I was diagnosed with multiple myeloma. Since then I've been treated with Velcade, Cytoxan, an autologous stem cell transfer, Revlimid, Darzalex, Pomalyst, Emplicity, Carvykti CAR-T, and now Talvey. And of course the Evil Dex™ has been along for the whole journey.
Overall, it hasn't been all that bad until now. Yesterday was supposed to be my first regular dose of Talvey after the hospital stay, but I canceled it until my taste buds and breathing recover. Once that happens, I'll have to decide what to do next: try another dose of the Talvey or talk to my oncologist about switching to a different bispecific treatment (which would require yet another stay in the hospital while they ramp it up). We'll see.
As I've said before, I haven't learned any deep life lessons from this experience. I just wish it had never happened. Nor has there ever been any bravery or resilience or any of that involved. The heroes of this story are the research scientists who invented all the different molecules I've taken over the years. My part was only to take the meds the doctors recommended and put up with whatever they did to me. The alternative was worse, right?
So happy birthday, cancer. May you have many more.¹
¹Because every additional birthday for the cancer is an additional birthday for me.
I've been following since the beginning. I wish you all the best. Thanks for all the content I've consumed over the years!!
I wish you didn't have to go through it.
My close friend was diagnosed with Multiple Myeloma in 2013. At that time they gave him 1 to 3 years. It's now been 11 and 1/2 years and he's doing well. Glad to hear you're doing well all things considered
Yes, many more birthdays.
Many more birthdays, posts, photographs, cat moments to you.
By the way, sometimes courage is just staying in the game, and not checking out.
Congratulations (to you, not the cancer)!
So long as there's more treatments available, there's hope for remission or better. Sounds like that hope is still there.
Congratulations
May you live to be 100
I went through 6 months of chemo in 2018. At first I didn't want to be called a survivor because I didn't do anything different than the people who didn't survive other than having a nonlethal case. I'm now OK with the concept of being a survivor because it's an experience I had that gives me something in common with a set of people--being told I have cancer, having surgery to remove it, talking about the options, being miserable for a period of time because the treatment made me feel like crap.
Thank you for continuing to write interesting content for us to read.
Happy anniversary!
Or birthday!
i've had cll since 2007. fortunately it's the slow-moving variety of a slow-moving cancer. the only "insight" i have is the realization that it's my own body that's trying to kill me. not a bacteria, not a virus. not a prion. my own cells. and that's kind of weird. good luck, kevin. may science be with you.
My wish is that you outlive the cancer by many, many years.
You don't give yourself enough credit, it seems pretty clear to me that not only are you resilient and a fighter - for the right medical decision and the determination to see it through - but everyone in the Drum household has played a part in keeping both hope and strength up. Certainly Marian - and Hilbert and Charlie probably intuit that your health is not as it was years before Charlie arrived - dogs and cats often seem to know, whether through scent or other
phenomena.
Those of us who experience pain, but don't face a diagnosis such as yours, have to admire your being able to travel and share your photogrsphy results snd opinions (for free!) during your medical trials.
Wishing you all the best, with successful treatment and few bad side effects.
👍👍👍👍
Very happy you’re still with us
Instead of wishing you the best of luck, I'll wish the scientists working on a cure the best of luck.
What does virtually every real hero say (including cancer researchers)? "I'm no hero. I'm just doing my job."
What does literally every non-hero not do? Their job.
Just saying.
Happy Anniversary, KD! Hoping for many more!
"¹Because every additional birthday for the cancer is an additional birthday for me."
I remember reading your initial announcement that you'd probably never cash a Social Security check.
At least no one ever loses a battle with cancer. As Norm MacDonald pointed out, you either win, or it's a draw.
This sucks but, as you said, the alternative is worse. Here's to many more c-birthdays!
hang in there, what a struggle! i think your experience helps researchers and future patients. so you will leave a legacy as a great political blogger and contributor to science and medicine!
Hey I just want to say -- you are quite brave and a true inspiration for carrying on with what you do so energetically and with such dedication even with that cloud always on the horizon and these dreadful drugs and medical procedures.
Wishing you many many more birthdays indeed!
Really wishing you the best. This is tough stuff. And those who research, commercialize, and produce these treatments are all pulling you every day.
I'm glad you're still around. And thanks for sharing your cancer journey. I've found it refreshing to read your updates since they aren't overly sentimental or inspiring or tragic. Life is sometimes incredibly beautiful and sometimes incredibly awful and often just kind of mundane, and there's not always a lot of rhyme or reason to which you'll get.
It's often said that it's hard to have heroes today. Well, I'd say that Kevin, you are a hero of mine. First your blog is an inspiration in the way you cut through the data to apply good sense and intelligence to tell us what is really going on. That is actually very hard to do in our complex and ideology-saturated world.
And also, you continue to do this day in and day out while being often quite sick and miserable in your ten-year battle with cancer. Except when you stop to inform us about your health status, you carry on blogging, from our perspective, as if you are in perfect health. Thank you for this, and I hope you can do this for many more years!
Best of luck with your latest round of treatments!
And happy real birthday tomorrow!
"Nor has there ever been any bravery or resilience or any of that involved."
Kevin, I have to disagree. Tackling a difficult health condition with a fair amount of equanimity and keeping an honest and rational perspective and sharing it all with us on your blog with little or no self pity may not be the bravery of the battlefield that we typically associate with heroism but taking life head on and trying to keep your head straight is a commendable thing too. And I would wager there are other cancer sufferers out there who would agree. Cheers.
I hear a list like that and I wonder . . . . how were all those names generated? Is it what people scream when it is give to them? Does it come out of the same machine that generates military operations? Do they workshop it before handing it out?
Something to look into during the next ramp up. I have to say you've dealt with it with equanimity and curiosity and I respect that.
Kevin, I wish you the best. You deserve it, and you've earned it.
I wrote this song on the 10th anniversary of my diagnosis with CLL. I've gotten to 18 years now, so I'm past the life expectance from the onset of CLL. In two years, I'll reach the average age of onset, my next goal. Yeah, I got it about 20 years early.
I'm including this song because of your comment about bravery. It resonated with me.
Here it is:
C-Word
I read in the paper about Lillian Gray
She's battled the C word five years to the day
They call her courageous and they call her brave
As they pat her wig with the permanent wave
If the lovely Miss Lillian is the least bit like me
She lives near denial and pretends she is free
She still goes to the doctors and she'll do as she's told
Then she'll act like she's healthy just a little bit old
If it's bravery to pretend
That things are like they've always been
Give me a silver medal my friend
And we'll go back to the dance
We'll go back to the dance
I admit that I'm lucky in an odd sort of way
My version of the C word is mild they say
They pump me with drugs and they keep it at bay
But it keeps coming back and it won't stay away
If it's bravery to pretend
That things are like they've always been
Give me a silver medal my friend
And we'll go back to the dance
We'll go back to the dance
They tell me if I can somehow endure
That the lab rats are closing in on a cure
That will knock my C word right on its ass
And then I can say that this too shall pass
Stephen J Gould, the well-known paleontologist and evolutionary theorist, had a widely known bout with peritoneal mesothelioma. https://www.mesothelioma.com/blog/surviving-peritoneal-mesothelioma-stephen-jay-goulds-cancer-journey/. Like Kevin, he looked at the data, and observed that the survival curve for people with the disease flattened out after a few years. Although half the people died in the first year or so, the other half did not. If you could make it out to 3 or 4 years you were likely to live for a long time. So his goal was to get to the flat part of the curve. He made it to about 20 years after diagnosis (before a different cancer killed him), at a time when median mesothelioma survival was less than a year. I think Gould and Drum are kindred spirits -- in their devotion to following the data and in their positive approach.
May fortune shine upon you, Kevin, and may you make it to the flat part of the curve.
Ten years. Kevin - you are a fighter and need to give yourself more credit. I wish you many more years of cats, blogging opinions I usually disagree with, photography (you have taken many nice shots over the years), and life with Marion.