Monday, September 21, 2020

NPR-Pandemic Deepens Cancer's Stress and Tough Choices

Wrong and Right

Some examples of Wrong:

Recent text from friend:

Friend: When are we hanging out?
Me: 2021?
Friend: Seriously, come by and hang out.
Me: I wish I could but my immune system is crap, so I gotta be extra careful and can't do it
Friend: Lol

Text to therapist (In Feb):
Me: Hi Dr, I'm not going to make tomorrow's appointment, I need to take Gracie to a oncologist
Dr: Well, this is less than 24 hours so I'll need to charge you.
Me: Um, it's 22 hours, but whatever
Dr: Want to do a phone appointment? Otherwise I'll charge you

Same therapist (5 months later):
Dr: Hi Matt, just checking in. How are you?
Me: I'm surviving
Dr: Glad to hear you're doing well

Very Right:

At my visit with Dr Berenson last week, he said my myeloma is nearly undetectable. I'm coming up on 4 years on the Darzalex, Pom and Dex regimen and it's working great. If my lab results are the same next month, he'll do a bone marrow biopsy to check on abnormal plasma in my marrow. This surprised me a bit, given he typically doesn't see the point in doing a biopsy since we're not changing treatment at all. My plasma count was at 70% when diagnosed 9.5 years ago, so he'd like to get a new baseline. That's fine with me. We'll just do it in his office next month. The funny thing is sometimes I forget he's an actual doctor, I'm so used to coming in and chatting about non medical stuff with him. But he's a skilled and top specialist. Thank goodness.

Saturday, September 5, 2020

Cheryl Boyce

A couple of years ago, I wrote about Cheryl Boyce. Sadly she passed away recently after fighting myeloma for over 20 years. Since I wrote that post, I got to know Cheryl even better. She was a powerful advocate for all myeloma patients. She pushed for equity in health care. Cheryl impacted countless patients. On a personal level, she'd check in with me regularly, we'd chat, text and email. She sent me a beautiful card after Gracie passed away. She was a loving wife, mother and grandmother. For me, she was a friend and a family member. I am heartbroken. Myeloma Crowd did a nice a story on Cheryl and I'm sharing below. I'm also sharing my previous post. Rest in Peace Cheryl.

Honoring a Powerful Myeloma Advocate, Cheryl Boyce 

Cheryl Boyce

Saturday, August 29, 2020

Once in a Lifetime

Every year since 1995, before the football season starts I place a bet on the Minnesota Vikings to win the Super Bowl. Every year. I wish I had saved all the betting slips. But instead, every year since 1995, I have frustratingly torn those slips up, well, except for the past few years

Naturally, organically and obviously, the Vikings have never won a Super Bowl. 1998 was really that once in a lifetime season. That team was dominating. Still frosts me how they lost in the NFC championship. Don't ask me about the damn dirty bird. It's triggering to say the least. As are the 1975 playoffs, the cowboys, roger staubach and drew pearson. That was a life altering/affirming end to the season.

Cancer and the pandemic have partnered to give me some real emotional ups and downs. There's a palpable feeling of the loss of independence, with no end in sight. I know I'm not alone in feeling the stress of this all. I keep busy, but there's too much time to think and ponder and replay life choices and crossroads and all that. I've done a whole lot of what ifs. I know it's not helpful. One such what if, that's not bothersome and rather amusing is the below spreadsheet that I made recently during quarantine time. It compares the "investment" into the Vikings every year since 1995 to what would have happened if I had invested that annual bet into Amazon stock instead. This comparison is theoretical and flim flam at best, but the results are interesting.

 If you can't read this clearly, it shows that an annual $100 investment into Amazon stock since 1995 would now be worth nearly $300,000. Yikes!
Talk about having too much idle time, right? Talk about gambling not paying.

-Myeloma  I'm still cruising along on monthly Darzalex, twenty one days with a week off of 1 mg Pom and Dex. We lowered my Dex to just 4 mg at my monthly infusion. Yes!!! I need any modicum of relief from the havoc Dex plays on my skin and my emotions. Note though that Berenson did increase my oral Medrol (another steroid) to 12 mg every other day. Fortunately, Medrol doesn't give me the physical and emotional ups and downs. November will be 4 years on this blend. That's wild!

-Fitness Another side effect of steroids and covid is a near complete breakdown of muscles and strength and the unwelcome addition of layers of fat. I shaved my beard off recently and OH MY GOD, I've got at least 3 chins. And my belly is sad. Covid beers aren't helping, that's for sure. I bought a Garmin watch in July, which has motivated me to increase activity and track my walking and fitness. 8 mile walk this morning. My goal is to be 170 pounds by next the end of godawful 2020. I was 188 this morning, which in the past would have been outstanding. But that's when I had calves and arms. In the summer of 2012, when I was getting 80 mg of Dex per week, I hit 220 pounds. Oh, and I yelled at lots of people at work.

-Why shave the beard? Two reasons. It's been so freaking hot here, I wanted to give my face a break and it feels great. Also, I've got a small skin cancer on my left cheek that requires MOHs surgery. I had to shave part of the beard for the upcoming procedure, so I took the whole darn thing off.  Two benefits to the beard: 1) it hides my 3 chins and 2) it gives me a bit more serious, intimidating look, as opposed to my clean shaven non-fear inducing face. Why do I want this? Because I do. MOHs is this Tuesday.

- Muscles Since about March, I've been experiencing random yet all encompassing body aches, weakness and fatigue. I thought it might have been the myeloma, but it's definitely not. Phan had me (and Leslie) do two covid tests a week apart. All negative. Berenson sent me to a rheumatologist, who is running an assortment of tests. Yesterday I gave 12 tubes of blood. In a week or so, we're doing an MRI of the legs and a couple of other tests, including a swallow test. It's possible I'm just getting old and worn down from nearly ten years of continuous treatment. But the weakness is maddening and frustrating. I was actually starting to feel pretty good starting in June. Two daily naps were down to one or zero per day. But a couple of weeks ago, I woke up in the middle of the night with a splitting headache. In the morning, the headache was gone, but the body pain was back. Connection? Doubtful, but we'll bring it up to the doc at next visit.



-Read Carl Safina's Becoming Wild

-Update My nephew in Lake Tahoe has volunteered to place my Vikings bet for me at a casino that is just a few blocks from his home. Phew!! 2020 is so frigging nuts that maybe this is the year the Vikings win the Super Bowl. Maybe maybe maybe, this will be that once in a lifetime season.

Tuesday, August 11, 2020

Interview with Carl Safina

Carl Safina writes beautiful books about animals, their intelligence, their culture and their importance. His latest is called Becoming Wild. His book Beyond Words was magical and inspirational for me. Here's an interview he did recently. I strongly suggest giving it a look.

Monday, July 20, 2020

Coated Tylenol, Skyhooks and an Elevated Foot

At the beginning of 1975 I was 13, a chubby kid and already a tormented Minnesota Vikings fan. I didn't have a Bar Mitzvah, but I was a member of a boy scout troop that met at a local temple. Our meetings were in the evening and at one particular meeting, our troop leader had us run races around the block which included a short cut through and alley. We had two races. For the first race, half the kids ran, while the other half ensured there was no cheating. For race 1, I was posted at a spot in the alley, behind the temple playground. As one kid ran past me, I took a small step back and right onto nail sticking out of a board that went through my shoe and into a bone of my right foot. Fortunately I was/am left footed, so the injury didn't mess with my kicking capabilities. Curiously, I am right handed, but have the absolute worst handwriting and I dribble a basketball with my left hand. I can barely bounce a ball with my right. I'm thinking someone early on, perhaps noticed I might have been left handed and changed me to right.

That nail into the bone caused a nasty infection that laid me up for the entire summer that year and generally impacted me for the remainder of 1975. Doctors opted against surgery to clean it out, but instead had me wearing a cast to immobilize the foot and had me keeping it elevated. When the cast came off, I alternated soaking it in hot and cold water. Eventually the foot mostly healed.

Later in 1975 the Vikings started the season 10-0. They were one of the best teams, if not the best, in the league. Fran Tarkenton was MVP.  Chuck Foreman was awesome and the defense was dominating. They lost in the playoffs to the cowboys on a last second hail mary pass. To this day, I hate, no, loathe the cowboys. Their receiver clearly committed a penalty and pushed off a Vikings defender to make that last second catch. The penalty went uncalled by the officials, because, you know, the cowboy "mystique". It was some real bullshit, I'll tell you that. That was one of the moments where I know exactly where I was one when that play happened. I was at my aunt's house, sitting in a restored barber chair. Also note that my aunt's husband let me smoke cigars. Curious in hindsight. But times were different and as they say, one doesn't inhale cigar smoke, so they're not as bad as cigarettes. So they said. I'm gonna go out on a limb and say that is probably not true. I'm also going to say it's surprising I didn't get addicted to nicotine.

Back to the summer of 75, my infected foot summer. Jaws the movie came out. I watched it at the Century Plaza theaters in Century City. They were state of the art and oh so plush in 1975. Across the street from these theaters was the Century Plaza Hotel, a favorite spot of Ronald Reagan. And two escalators rides down from the theaters was the Playboy Club. Several years later, as I approached my 21st birthday in 1982, I was hoping to go there. But it closed before I reached that milestone birthday.

Before Jaws was released, I read the book. It was one of several books that I read while stuck in bed with my elevated foot. It was my favorite read of that summer. I also read a few Agatha Christie mysteries.

A smell or taste can bring back very specific memories from the past. The catalyst for these 1975 memories (putting aside my memories of the Vikings cowboys playoff game which I probably think about 100 times every year) is Coated Tylenol. I took it for pain and to fight the infection back in 75. It had a distinct texture and taste that plain tylenol doesn't have. This morning I took two Coated Tyenol for perhaps the first time since 1975, and wow, it took me right back to the summer of 75, lying in bed and reading Jaws.

In late 2009, 34 years after the nail incident, my mostly healed right foot swelled up massively and I couldn't put any weight on it. It hurt like heck. X-rays showed a bone spur that had developed, probably to encapsulate the infection from back in 75. I had surgery in 2010 to remove the spur and I've been generally pain free in that foot since then. It still does flare up occasionally. Enough so that two years ago I went back to my foot doctor for a reevaluation. Custom shoe inserts took care of things. I hadn't seen that doctor since before myeloma, so he certainly was surprised to hear what I was up to. Leslie dissuaded me from telling the doctor about my theory that the 2010 foot surgery led to the release of dormant toxins that just a year later caused myeloma. There is zero science behind my theory. But can we rule it out completely? Also, coincidentally, in 2009 the Vikings again came painfully close to a magical, Super Bowl winning season. All Bret Favre had to do was fall down late in a playoff game against the saints.

Asking the same question, can we rule out my massive intake of diet soda and equal and aspartame as the cause of my myeloma? Actually, I hang my hat on that theory. But who knows. Also note that since the foot surgery in 2010, it's been non stop doctor's appointments and medical crap. Oh and also note, that since 2011, I haven't had a single diet soda nor equal. Equal I don't miss, but, wow, I really really miss having an occasional Big Gulp Diet Coke.

When I was first diagnosed with myeloma, we had challenges finding a treatment that worked, so I continued to get fevers, my kidneys teetered on failure and I was in and out of the hospital. Because of the kidneys, I had to be careful with what I took for my fevers. I couldn't take ibuprofen. So I had to take tylenol. I took a lot of tylenol in 2011. If I felt a fever coming on, I'd pop two tylenol. I could feel a fever on its way first with my ears and on the inside of my lips. They'd be burning up and that happened before a fever registered on the thermometer or before Leslie noticed I was burning up. I'll admit now that I'd try to take tylenol before Leslie noticed a fever was brewing, because I knew that if I had a fever of 101 or above, that she'd rush me to the hospital, which was the proper thing to do. But I hated, no, loathed the hospital. I'd do anything to avoid going, including downplaying how hot I was feeling. Was that smart? Um, absolutely not. Was I a good patient? Perhaps not always. More then a few days in the hospital was horrible for my mental state.

And during that time in 2011, while taking tylenol to mask my fever, I never took Coated Tylenol. Today might have been my first Coated Tylenol since the summer of 1975. I took it because I woke up super achy. It's not the myeloma, which is well under control. Almost four years on Darzalex. But since about March, one day a week, I wake up feeling particularly achy in the bones, joints and muscles, and lacking energy (Two naps today). Today was that day. Tomorrow I'll be perfectly fine. I have an appointment with a rheumatologist in a couple of weeks to see if it's something autoimmune related.

A small part of me thinks that it's nothing physical and that the aches, pains and lack of energy are mental, brought on by the lockdown and a feeling of total loss of control. Cancer took away some of my independence and freedom. But the virus has added a whole other level of feeling I have minimal control of what I can do. With myeloma, I have always felt like I could power through it and play a large role in the outcome. Conversely with the virus, like so many of us, it feels very out of our hands. Sure we can all wear masks and socially distance from each other. But with my crap ass immune system, I'm going the extra mile. Leslie is working hard to keep me safe and healthy. And while I know it's important, it's really hard to give up control and independence. Shades of the summer of 1975.

And as I write this, it's hit me that the Coated Tylenol this morning didn't suddenly take me back to the elevated foot summer. The past few months have been a real reminder, and without realizing it, I'm recreating some of the same coping mechanisms. Books, puzzles, trying to be creative, mentally checking out. I've been thinking about a painting of Kareem Abdul Jabbar skyhook that I did back then. It was based on a jigsaw puzzle. I've been looking on line for that specific puzzle, with no luck. But I have a perfect mental image of it. Maybe I should try to recreate it, to really bring things full circle.

A final note: We watched the movie Towering Inferno the other day. Cheesy disaster movies were huge in the 70s. And watching it was definitely a trip down memory lane. Turns out the Coated Tylenol was really just a tipping point for my 1975 memories.

I hope you all are staying safe and healthy, and wearing a damn mask!!

Coyote on the Run