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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

Whatevs

 

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.

 


Steroids can Kiss My A.....

 

Sunday, May 9, 2021

10 Years Plus One Week

 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.


 

 











Thursday, April 22, 2021

10 Days till 10 Years

 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

Tuesday, April 20, 2021

LLS Funding Assistance Programs

The Leukemia and Lymphoma Society has two funding programs open. Note that Myeloma is included in the LLS efforts and funding assistance programs.

 

The Leukemia & Lymphoma Society’s $500 Patient Travel Assistance Fund for Central and Southern California is now open.  Plus the   Adult Urgent Need program in now opened too.

Contact Us at LLS : (877)557-2672 – FinancialAssistance@LLS.org


The Leukemia & Lymphoma Society's (LLS) Susan Lang Pay-It-Forward Patient Travel Assistance program is available to blood cancer patients, with significant financial need, who may qualify to receive $500 in approved treatment-related travel and lodging expenses including: ground transportation; tolls; gas; parking; car rental; car maintenance, repairs and parts; air transportation; baggage fees; lodging; and ambulance services.   https://www.lls.org/support/financial-support/patient-travel-assistance-program

  • By Phone: (877) 557-2672
    Monday to Friday, 8:30 a.m. to 5:00 p.m. ET
  • Online Portals: For Patients | For Medical Healthcare Providers


  • Awards are based on a first-come first-served basis, for as long as funding is available. Submitting the application doesn't guarantee acceptance in the program. Your application will be reviewed, and you will be notified of your status.
 

Urgent Need Program Covered Expenses

The Leukemia & Lymphoma Society (LLS) is committed to helping patients access their treatment in a timely manner so, in partnership with Moppie’s Love, the Urgent Need Program was created.

  • (Open) $500 The Urgent Need, Pediatric and Young Adult Fund serves pediatric and young adult blood cancer patients (birth to 39 years of age) who are in acute financial need.
  • (Open) $500 The Urgent Need, Adult Fund, in partnership with Charlie’s Fund, serves adult blood cancer patients (40+ years of age) who are in acute financial need.

The Urgent Need Program funds provide eligible patients with assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients will receive a grant of $500, once within a 12 month period. At the end of the 12 month period, patients can reapply.

Please note that applications are only accepted by members of the patient’s healthcare team. LLS offers healthcare team members two easy ways to apply on behalf of a patient:

  • By Phone: (877) 557-2672
    Monday to Friday, 8:30 a.m. to 5:00 p.m.
  • Online: Online portal

Go to Website for more information

https://www.lls.org/support/financial-support/urgent-need-program


Sunday, March 21, 2021

It's Spring! How's the Fund Raising Coming Along?

 Happy spring everyone. Happy Sunday. Happy March Madness.

With 6 weeks to go, we're at $3,030 in my 10 x 10 Virtual 10K. The goal is a minimum of $10,000 for the Institute For Myeloma & Bone Cancer Research.

If you want to participate or donate, simply follow this link: Matt's 10x10 Virtual 10K


 

Friday, March 12, 2021

10 by 10 Progress Report

 Hi everybody,

 It's Friday, also known as Purple Friyay.  We're off to a good start. $2,145 raised so far. That's 21% of our goal. But remember the goal is to raise $10,000 by May 2. We can do it!!!!!!!!!

Here is the link to do a virtual 10k or donate. Matt's Virtual 10K for Myeloma Research

Thanks so much! 



Berenson on Mask Anxiety and Shaming

 From our local news.