"They say you're a thru-hiker when you finish a trail. I disagree. I think it's as soon as you get out here. Because you've already done the hard part."
Will "Akuna" Robinson
It's a rainy day here in Southern California. We're not getting the intense rain like Northern California but every bit helps. Things here are dry, dry, dry. So it's an inside day. This morning we avoided house chores by watching three episodes of the old and the classic Mary Tyler Moore show. More on this later.
Let's talk Covid, more specifically my immune system and the vaccine. I've had two doses of Pfizer and I've had the third dose. Dr B took both my blood and Leslie's a couple of weeks after dose 2, checking for antibodies. Leslie had a great response, to be expected. Me, on the other hand, had zero, nil, no antibodies. No response. We're waiting on results from the third dose to see if I have any protection. We knew that ten years of myeloma and non-stop treatment would impact my immune system. But it's a bummer getting no benefit. Berenson participated in a study that showed 45% of myeloma patients had a good response. 30% had no response, so I'm not alone. Berenson's work also showed that Moderna is a bit more effective for myeloma patients. Once we see what my antibody situation is after dose 3 of Pfizer, I'll get Moderna. Fingers crossed. Oh, there's an important webinar this Weds Oct 27 on Vaccines and Myeloma Patients.
Either way, I'll keep doing what I'm doing, which actually isn't too bad. I've got a couple of friends I see. If I eat out, I eat outside. I mask up and I wash my hands. I can be a little lackadaisical at times, and get more than a little tired of the continued changes to my lifestyle. But I'm ok and really can't complain.
I recently turned 60 and Leslie surprised me with the best gift ever; a private tour of a non-profit exotic animal rescue sanctuary called Lions, Tigers and Bears. It was amazing, heartbreaking and heart opening. I'm so glad that there are people who are giving these magnificent animals a safe place to live away from the abuse or neglect they had previously experienced.
And yes 60. I was 49 when diagnosed. So do the math and for 17% of my life I've had myeloma. Aint that a kick in the pants? I'm still alive and kicking and I'm aware that I've had a good run, for whatever that is worth. Again, fingers crossed it keeps on going. It should.
When the Covid lockdown began I binge watched a show called Las Vegas from the early 2000s. Pre-dvr, I'd rush home on Friday nights to watch it. Six seasons....hold on, googling for accuracy....correction 5 seasons. The show was pure shlock and I loved it. The early 2000s were when I was going to Vegas twice a year. Once during football season and again during summer time. I used to think I'd move there. I had a couple of job interviews in Vegas and thought for sure I nailed at least one of them. But it didn't happen. And, recall, it was in Vegas where I got so sick, I thought I was going to die, about a month before my diagnosis. I've been back twice since 2011 and am missing it. But my aversion to crowds and potentially exposing myself to a novel virus have me delaying my next trip. I did recently take a quick one day turnaround drive to Stateline to place my annual (losing) bet on the Vikings to win the Super Bowl. Some day, it's gonna happen. It has to.
So I binged Las Vegas early in lockdown. I followed that with 20 seasons of Gunsmoke. Unlike Las Vegas, I hadn't watched Gunsmoke before. I loved it. It actually kindled a newfound love of westerns, horses and cowboy hats. I should add horse and stetson to my Amazon wish list.
After Gunsmoke, I was kind of without a show for a while that I could obsess over. But of late, both Leslie and I have been watching a lot of the Mary Tyler Moore (MTM) show from the 70s. We all know about my love of the Vikings and some folks know how that love of a football team translated into a continued love of all things Minnesota. Some facts about MTM: 1) It takes place in Minneapolis, 2) in early season opening credits Mary washes her car in a Fran Tarkenton jersey (yes the legendary Vikings quarterback) and 3) Mary lived on Wetherly Drive in the show. I grew up on a different Wetherly Drive in real life. So what's not to love about the show? And, importantly, it was and still is hilarious. I was told recently that in real life Mary Tyler Moore might not have been the nicest person. I refuse to believe this.
And since we are talking shows centered in Minnesota. There was a sitcom called Coach from the early 90s. It focused on a football coach from Minnesota State University. Around this time, I went on a couple of dates with a woman who was from Minnesota. That fact alone made this a perfect match. But it turned out not to be. Oh and one other fact about Coach: One of the co-stars was Jerry Van Dyke, the brother of Dick Van Dyke. I've also been watching old Dick Van Dyke shows, which co-starred Mary Tyler Moore, before she had own show. It's wild how things connect and come around like that.
And lastly, myeloma wise I seem to be fine. Still on Darzalex, Pomalyst and low dose Dex. Five years now, which is nuts and awesome. 50% of my myeloma journey has been on this regimen. For the first five years, I went through 5 different treatment regimens with varying degrees of success ranging from good to oh crap it's not working.
Stay safe and healthy everyone.
I really hate this, but we've lost another wonderful person to myeloma. She was truly special. I'm not sure how I met Julie, but we both have blogs and our stories are quite similar. She didn't live too far from me, so I met her in person a couple of years ago at an American Cancer Society event called Bark for Life.
Julie had a really tough time of it over the past couple of years and she shared all her challenges on her blog. Below are words shared by Julie's two children
It is with great heartbreak and sadness that we share that our beloved Mom Julie passed away this morning at home, surrounded by her loved ones, after a nearly 12 year long battle with Multiple Myeloma. Her strength, courage, and sense of humor never wavered and we find peace in knowing her long fight is now over. No more pain. No more suffering. Thank you so much to all of her family, friends, former students and everyone whose lives she touched in some way. There are so many of you. Your love and support meant the world to her. She appreciated all the love and comments you all have been leaving on our previous posts on her page. Please respect our time as a family as we go through the grieving process. The world lost an amazing angel today that influenced and touched so so many lives. We love you Mom
Ten years is in my rear view mirror. My disease is stable. Monthly infusion plus daily chemo pill keeps it that way. Every month I do my labs and have trepidation that my tiredness or aches reflect a changing disease status. Every month I wait for the results that say I'm going to have to change my treatment regimen. And (so far) every month (for the past 4 years), that trepidation is put to rest and I remain stable. Logically, I know that my tiredness is likely related to me waking up way too early most days to watch tv and drink coffee, followed by my workout. It's really no wonder I need a nap at 10 A.M.
For the first 7 years after my diagnosis, I fought and battled to remain a productive employee with a paycheck and insurance. All my daily energy went into this. Quality of Life was blah, at best. But now, three plus years after retiring, I wonder how the heck I did it.
Let me say that when you are diagnosed with an incurable cancer that has an average survival rate of just a few years, there is an expectation that all bets are off. Live like there is no tomorrow. But then you hit ten years and wonder what have you really done that is living life to the fullest. And hitting ten years also makes me feel like I better plan for a long future. Real life doesn't stop, even with a myeloma diagnosis. It's a precarious balancing act.
In October I will turn 60. Wow. In 1979 I was 17 and could touch the rim of a ten foot basketball rim. (Yes, I sound like an old guy reminiscing about the old days). It's an impressive feat, in my humble opinion, especially given I'm five foot ten inches at best. Last weekend I was at a house that had an 8 foot rim. I was feeling good and grabbed a small, palmable ball and attempted a dunk on that rim. And surprise, surprise, I dunked it. A couple of years ago, I had resigned myself to being achy and slow moving and I could barely get my feet two inches off the ground. But here I was (I'll spare the calculation) getting a 13 inch vertical. So I've made it my goal, that by my 60th I'll be able to touch a 10 foot rim again or at least get close. Meaning, I am adding 24 inches to my vertical leaping ability. It's a bit absurd to think this is possible, but whatever, I'm going for it. I'm getting lean, doing squats galore and climbing steps.
Why not? It's a good excuse for me to get into good shape. I have cancer, and I need to grab life by the horns while I can. Frankly, I'm a bit sheepish, that perhaps I haven't done it up to this point. But the time is now.
Hop to it!
I’ve heard all the comments over the years. “what..do you have two
left feet?” “Stop faking it” “Give me an axe, I’m
chopping this fucking thing off”.
This list goes on and on. It’s frustrating, annoying, and insulting. It’s not my fault that the left foot has led a charmed life
while I, the right foot, take much of the blame for many things. The left gets to do
all the kicking. It balances the body better. It's better at jumping. It’s half an inch longer. And then to add insult to injury, even the left hand is better at dribbling a basketball than is the right hand, but
no one suggests cutting off the right hand. It’s unfair I tell you. Left, left, left. It's enough to make me want to kick something.
The typical foot has 26 bones. Leftie has 26. And what do I have? 25, thanks to surgery eleven years ago to remove a small sesamoid bone. The surgery was supposed to relieve me from decades of pain and insecurity. But here I am, still sending pain signals to the brain.
I do wonder if perhaps I have played a more positive role
than acknowledged. True, there have been many times I’ve
swollen up or been a little bit numb, forcing all other parts of the body to rest and marinate. On the other hand, well on the other foot, I’ve helped do a lot of cool things. Both me and the left foot have climbed mountains, run races, hiked, biked and so on. We both carried the body across the stage at graduation from UCLA. Take that!!
Not to shirk my responsibilities, but as a foot, I have to rely on the brain for many things. And the brain has been known to go off on various tangents, laying on the guilt. The brain sometimes thinks that it was my fault I stepped on a nail and got a bone infection when I was 13 and at a boy scout meeting held at a local synagogue. I'm just a foot, dammit. Perhaps the brain could have been looking out for that rusty nail sticking out of the board in the dark alley behind the synagogue. Ten years ago, the brain decided to blame me for the onset of a blood cancer, pointing at the surgery as releasing 36 years of encapsulated toxins in the damaged sesamoid bone. I'm just one foot!!! I'm not that powerful or spiteful.
I've had casts, walking boots, custom shoe inserts and spent many an evening soaking in warm water or elevated. Meanwhile my arch nemesis, Leftie, gets to skip along without a concern. Lately I've been acting up. Swelling and causing pain. Our team, aka the body, had been working hard at getting in shape and putting on the miles. And what do I do? I force a recess in long walks and remind the brain of what a fricking pain I've been. Fortunately I'm being taken to a podiatrist who respects me and is doing his best to make me feel good and relieve me of frustration for being a drag on the rest of the body. I can't talk, but it's nice to be heard nonetheless.
I'm gonna get there. I'll probably never kick a 40 yard field goal, but I seriously doubt Leftie will either. I just want to be able to absorb the normal wear and tear of an active person. And ideally, I'd like to do more than just be a normal active person. I'm being told if I can get my act together, that we might start running again. In fact, I am hearing rumors that I might be expected to run 400 meters for time. Hell yeah, I'll be able to do it. If I really wanted to be petty I'd tell the left hamstring that it better hold up and not strain itself like it's known to do. Get your act together Hammy!
It's not a straight path, but don't count me out yet. I'm right behind you, left foot.
We did it. We lasted 10 years (and then some). I'm happy, shocked, spent, and so on. The fund raiser for the Institute for Myeloma and Bone Cancer Research raised $7,438. It's a bit short of the goal, but a rousing success nonetheless. For my 10k I recreated my bike ride to my old office building. It was on this commute in early 2011 where I started to feel fatigued and weak and worried something might be seriously wrong with me. The surprise of the ride was the building not being there. It's gone. But I'm still here. Below are some photos of the momentous day/ride.
Honestly I'm kind of emotionally at a crossroads after building up to ten years. Where and what and when loom large inside my thought bubble. I'll share more about this later.
For now, I am sending a huge dose of gratitude to everyone. I"m blown away by the support and love. Thank you, thank you, thank you.
Holy fucking shit. And I mean that in a good way. That's what I think when I really sit to ponder what the heck has happened in the last ten years. In 2011 at about this time, I was in Las Vegas, sweating, shivering, feeling like I was going to die. And not from losing big or drinking to much. Instead from a disease that I didn't know I had and certainly hadn't heard of. I flew home early from that trip and was soon thereafter hospitalized with severe anemia. I was discharged on May 1. Went to the doctor's office on May 2 with Leslie and my mom and was diagnosed with Multiple Myeloma and the rest is history.
Year 1 was the toughest. We couldn't find drugs that worked and I was about ready to throw in the towel. Years 2-7 were no picnic. I relapsed a couple of times, worked full time and in hindsight, was barely functioning mentally and physically.
Years 8 - current have been good. I'm on Darzalex and it's the best drug I've been on. I feel good. I am almost embarassed to say so. I shouldn't crow when others are struggling. I shouldn't crow, so I don't jinx this good run I'm on.
I'll say this though: I've been working on building muscle. I looked in the mirror the other day and realized I have zero leg muscles and no ass. And that's bullshit. I 'd been prepping for using a walking stick to help stand up and kneel. But I'm focused on being a kick ass cancer patient and nearly 60 year old. I am so damn weak and I'd accepted it. I'm still super heartbroken about not summiting Kilimanjaro. I let people down. And I really let myself down. I know that it had only been 3 months since a relapse that the climb took place. But I thought I could simply do it...as I had for most of my pre-cancer life. Climb Mt Whitney? Bike a 100 miles? Just buckle down and do it. But not now and not four years ago with Kilimanjaro. It makes me so mad at myself.
I have to work harder than ever on everything now. I need to think, focus, push, communicate and so on. Yet here I am. I'm trying to live right and enjoy life. I miss the old Matt, but I don't miss the old Matt. If that makes any sense.
Anyhoot, this weekend, I am going to ride my bike to my old office building. In early 2011, I knew something was wrong when my daily commute by bike got more and more difficult.
And I'm going to rebuild my legs and glutes and strength.
I'm raising funds for the Institute for Myeloma and Bone Cancer Research in honor of my 10th cancerversary. Without them, Berenson and my amazing medical team and loved ones, I wouldn't be venting right now. I'd be silent. Chip in if you can. I know times are challenging so any amount helps fund important research into new treatment and finding a cure. Thank you all for convincing me to keep writing and sharing. follow this link to donate or join my virtual 10K!1
"They say you're a thru-hiker when you finish a trail. I disagree. I think it's as soon as you get out here. Because you'v...