Pages

Monday, January 17, 2022

Thank you!

 I'm due for a post. Well due only because I feel like writing, it's not like I have any kind of schedule.  But for this post I just want to say thanks to those who may have donated to the GoFundMe for my brother and his family. The outpouring of support has been amazing and has truly help lift their spirits. They still have a long road ahead of them and much grieving to do. But they are safe and sound at my Mom's place and will be soon be moving into a rental house while they rebuild their house.

Again, thank you so much. 

Saturday, January 1, 2022

Colorado Fires Hit My Family

 My mom, brother and his family all live in Louisville, Colorado. They all had to evacuate due to the fires the other day. My mom's home was ok and they're all safe and together. But my brother's home was destroyed. My brother and sister in law had less than five minutes to grab their kids and pets and go. Everything else was lost...memories, cars, clothes, photos. Everything. I'm heartbroken for them. They weren't able to get one of the cats, Jinx, and that adds to their heartbreak. My niece Emma's boyfriend, Julian, started a GoFundMe to help my family get some of the necessities and essentials.  It's gonna be a long challenging road for them. I'm sharing the link if you are able to contribute something. 


Sunday, December 26, 2021

Psychology of the Beard

 The other day Leslie and I were talking, and I was telling her my focus is lacking, that over the past few years, it's really worsened. I suppose you could call this chemo brain. Or it could just be I'm getting old and long time habits are worsening. It takes me forever to read a book. It's hard to just sit still and do one thing. I go to bed early and I'm exhausted at night, but I can't wait to wake up. Sleeping for me is not my favorite thing. Oh and combine the focus issues with vision changes and depth perception issues from the dreaded dex and you get Leslie not always being thrilled to be a passenger when I'm driving. I've grown to hate driving anyways and I'd rather have Leslie drive.

Normal habits have gone by the wayside. Ten plus years into myeloma and maybe, just maybe, I'm finally accepting this fact. I realized recently that I've been trying to act like nothing has changed in my life. But life has changed tremendously. I'm not going to be running any marathons or riding any centuries. Mixed drinks are out. But I can walk, and walk and walk. The other day I did a ten mile walk. It's pretty darn glorious and I plan to go on some epic walks/hikes in 2022.

Back in the day, pre-cancer and pre-being 60, if I needed a change, I'd change things up. Change jobs, change cars, get a haircut. I'd love the feel of going from unruly hair to slick, neat hair. It fired me up. I felt like a champ. When I turned 44, I created my 45 by 45 list. 45 things I wanted to accomplish before I turned 45. This pre-dated the whole bucket list phenomena, so please don't call it that. On the list was for me to grow a beard. I had never had any facial hair up until this point. And turns out, the beard really shook things up. What was unexpected was how it changed how I was perceived at work. The beard got me more respect. My opinion became more valued. And I liked to think it put a smattering of fear into people. I looked meaner and felt more important with the beard. I've had it probably 90% of the time since first growing it in 2006. I shaved it off the other day. My face needed a break, I needed a break. Oh and as a side note, as time goes by and work is farther away in my rear view mirror, the more my ire is raised. Even with the beard, I wasn't treated great by some folks in charge. I'm not sure I was necessarily singled out. It's that the system isn't designed to treat employees as individuals. I was a cog and either I could fulfill my role or someone else could. ...asap. Nonetheless, it felt and still feels personal. My co-workers and friends were awesome and so supportive, but a handful of folks....oye.

And speaking of changes, I saw that the Mirage Hotel in Vegas is becoming a Hard Rock Hotel. The Mirage is where I got so sick right before I was diagnosed in 2011. I thought I was gonna die right there in the middle of the casino. The old Hard Rock Hotel was off the strip and is where my friends John and Doreen got married in 1995. It was a pretty great spot. Three years ago, I made my first visit to Vegas in many years and we spent time at the Mirage. I needed to close the loop from feeling so sick there in 2011. 

Once, if ever, Covid calms down, I plan to go to Vegas with a friend. And in the spirit of accepting the fact that I've slowed down, it'll be a different sort of trip. A bit mellower if you will.

I'm not writing as much. It's just lost some of the thrill, plus it's hard for me to sit and write. For instance, as I write this I am watching the Vikings (who are losing...natch). I'm doing well health-wise. Little things pop up now and again, but nothing that is noteworthy. I've been on Darzalex, Pomalyst and Dex for five freaking years now. It's pretty darn remarkable. Like how did that happen? It's awesome but a bit of a mystery. And I better toe the straight and narrow to show gratitude for this good fortune. Conversely, I could say fuck it, I'm gonna do whatever I want since this is all bonus time. For a tried and true Libra, finding balance between these two divergent paths is a real mental and physical challenge. 

And speaking of writing, a few years ago I wrote a screenplay called Buy the Vikings. It's quite a great story, if I do say so myself. I just need someone in the biz to read it. I've started working on a new screenplay called When the Chips are Down. It'll be a bit autobiographical, a bit fantasy and a bit dystopian. I'm excited to finish it. Sadly, with my focus challenges, it's taking me a long time to write it. I'm getting there though....carrying around a box of 3x5 cards to jot down notes when something hits me. It's a necessary adjustment. Just like almost everything I do, I've had to adjust. Sure I might kick and scream with some of the changes, but I'm confident it'll all work. Or am I?

Oh and let's briefly talk vaccines. I had 3 doses of Pfizer. Berenson checked my antibodies after the second and third dose. No antibodies from either. Leslie had a good response from her two Pfizer shots and will be getting her booster this week. Studies indicate Myeloma patients aren't generally getting a good response from the vaccines. But the studies also show that Moderna might be a bit better for myeloma patients. I got a first full dose of Moderna the other day.  We'll check antibodies in about two weeks. So we're staying safe and staying close to home. And if anyone hasn't been vaccinated....do it!

Happy new year everyone.


Thursday, November 11, 2021

Quote of the Day

"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

Great article in ESPN

Monday, October 25, 2021

You're Gonna Make It After All

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.

Thursday, October 14, 2021

Cancer and Careers Virtual Conference

 Working with cancer is not easy. I'm sure we all have stories of the challenges, Cancer and Careers is a great organization and having a virtual conference Saturday October 16.  Click here to register for free.

Tuesday, October 5, 2021

Round and Round

 It's been a while since I've written. All is well. My myeloma is stable. I'm coming up on 5 years on Darzalex. 

And that's all I got for now.





Friday, June 11, 2021

Julie Visner

 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


 This is her post from April: Julie's Myeloma Moments


Thursday, June 10, 2021

Whatevers

 

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!

Friday, May 21, 2021

Right Behind

 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.

 


Thank you!

 I'm due for a post. Well due only because I feel like writing, it's not like I have any kind of schedule.  But for this post I just...