Wednesday, October 18, 2017

Upcoming Myeloma Conference & Webinar

There are a couple of educational events coming up.

The IMF has a free webinar on Nov 9 titled  Living Well with Myeloma: Shared Decision Making. Here is the link to register:  
https://register.gotowebinar.com/register/2365873431209187073

The MMRF has a  free Patient Summit on Nov. 18 in Los Angeles. Co-chaired by Dr James Berenson and Dr Amrita Krishnan from City of Hope. Here is the link to register:

https://www.themmrf.org/patient-summits/multiple-myeloma-patient-summit-los-angeles-ca-2017/

Sunday, October 8, 2017

Co Pay Assistance Programs

The Leukemia & Lymphoma Society, up until a week ago, had an insurance co-pay program that granted myeloma patients up to $10,000 per year to help with paying insurance premiums. The funds for that program were unexpectedly depleted last week, leaving many folks in a difficult spot.

Here are a couple of links to organizations that have insurance co-pay assistance.


o   Patient Advocate Foundation – Myeloma Co-Pay Assistance for Patients with Medicare, Medicaid, or Military Benefits. Qualified patients may receive up to $10,000 per year.
https://www.copays.org/diseases/multiple-myeloma


o   Healthwell Foundation – Myeloma Co-Pay/Premium Assistance for Patients with Medicare. Qualified patients may receive up to $10,000 per year. 
https://www.healthwellfoundation.org/fund/multiple-myeloma-medicare-access/

Friday, September 29, 2017

Two Months and a Day

It's been two months and a day since I retired. So far it's pretty darn nice. What have I been doing you ask? Two trips; Chicago last month and Philadelphia last week. Philly was to make some videos describing my darzalex and myeloma experience. Super fun. It was the real deal production production. Make up, wardrobe, lights, multiple takes and so on. Photos below. I was joined by two other patients on darzalex. Wonderful people.

Since July I've had two MOHs surgery on my forehead to remove squamous cell carcinoma aka skin cancer.  On Mondays I volunteer at the Leukemia & Lymphoma Society. I've had several lunches with ex-work people and that might cover it. I will say this, I feel a million times better not working. Energy is great. I can take afternoon naps. Retirement has been exactly what my old sick body and mind needed.  I'm getting my pension. Social Security Disability is in the works and I've applied for copay assistance from the LLS.

Today I took about a ten mile bike ride. While I've lost weight and have been working out regularly, I'm definitely not in bike riding shape. It might be time for the old man, upright bike. Leaning over the handle bars hurts the shoulders and hands and wrists. What the fuck?!

Mentally I'm doing alright. Still figuring out who I am and what my passion is. The conversations associated with my travel are quite cathartic, but also reinforce that I can't just be identified by cancer/myeloma. A friend of Leslie told her that life is art. Everything we do is art. This philosophy actually is helping me out.

Thanks to Leslie, we got Berenson to reduce my steroid dosage, reducing not just the emotional and energy ups & downs but also reducing the negative physical side effects of non stop steroids. Now what I'd love to cut back on is the baby aspirin. My blood and skin are so fricking thin, I'm constantly bruising and bleeding. I don't even know where they come from. Below are photos of my currently bruised foot and hand.

We're coming up on 56. Who would have thought?






Tuesday, September 12, 2017

Webinar tomorrow on Exercising with Multiple Myeloma

Follow this link to register for an hour long webinar tomorrow Sept 13 at noon west coast time/3 eastern. The topic is:

Exercising with multiple myeloma.



Friday, September 8, 2017

Tom Brokaw's Myeloma Journey

Brief, good read...

http://fortune.com/2017/09/08/tom-brokaw-health-cancer/

Thursday, August 31, 2017

56 Yikes

I'd like to think there is an old fable about an old man who is constantly trying to push a large rock up a hill. Every day he is struggles and pushes and each day he gets little a closer to the top. Eventually he reaches the top where other folks are just hanging out. Someone says he had been watching the old man push rock for weeks and he asks why he kept at it. The old man draws a blank and shrugs his shoulders.

See where I'm going with this? I'm not sure this fable exists, but it's kind of a decent metaphor for where I am at currently. I'm nearing the end of week 5 of retirement. It's great. While my job wasn't hugely stressful, I feel like a huge weight has been lifted off my shoulders. I'm relaxed and more energetic. Having my myeloma at a great place I'm sure helps. I'm keeping pretty busy. Volunteering on Mondays at the LLS. I was in Chicago to talk myeloma and darzalex. I go to Philadelphia next month for more myeloma stuff.

What has surprised me is the serious decompression, both physical and mental, that hit me. As I've told people, I think over the last 6 years I was running on adrenalin. Keeping up with my health, kicking ass at work, maintaining relationships and so on. I was so focused on these things that perhaps I lost sight of me and who I am and what I'm about. This is a possibility. So much of myeloma is mental, focused on staying strong and perhaps forgetting about life before myeloma. I'm working to remember. Also with the decompression is the desire to do nothing serious. I want to keep everything light.

I visited my old office for the first time the other day, albeit to pick the order for our fantasy football draft. For the first time, I got the number one pick. It was my job to go home and update the yahoo app with the new draft order. Who forgot to do it? Me. I tried about 45 minutes before the draft but yahoo had cut off any changes. I screwed myself and others with that one. It's not a serious league but I feel bad for forgetting. And this brings me to my next point. I'm starting to think chemobrain is kicking in. Six plus years of non stop chemo might be impacting my synapses. I forget things, am absent minded and am finding if I read something once, with something as simple as a tv show description, that my brain often inserts a word that isn't there. I have to double and triple check. I'm half way wondering if there are brain tests. It wasn't bad visiting the office. Seemed the same. Quieter with me gone. But people in cubes, in front of computers. It was only 5 weeks ago that I was doing that. Not judgment here, just observational.

Yesterday I went to downtown LA to have lunch with a couple of attorney friends I worked with. We went to the Arts District downtown and ate at a restaurant in an old converted warehouse. Super cool. I walked around the area a little bit but it was hot as fuck, so I didn't get too far. I did see some chickens though. I do need to go back with Leslie and get my Mom down here from Berkeley to take her to the area.

In October I turn 56. Yikes. I'm closer to 60 than I am 50. How'd that happen? Considering that making it to 50 was iffy, this is a pretty good accomplishment. How to celebrate, how to celebrate.

Lastly I follow a group called Growing Bolder on facebook. It's inspiring stories about older folks accomplishing cool things. Today I read about a guy who was a long jumper in college. Now as he nears 60 he is in masters track and field and is again long jumping. Very cool. hmmm.

I'll close with some pictures from the past couple of weeks.
Flying home from Chicago to John Wayne Airport

The bean in Chicago. It's even more impressive in person.

Getting ready to talk myeloma and darzalex.

Took a Chicago bike to check out Wrigley Field.

All that's left from a Chicago deep dish Za.

Summer in the LBC with Leslie.

The shoes I ceremoniously left at my desk on my last day. Everyone was afraid to touch them.


FF draft order with me at number 1. Brain fart. 

Gracie kicking it. 

Chickens!!!

Lights with assorted underwears.

Honest Abe and I forgot the old time broadcaster outside WGN Radio in Chicago.





Wednesday, August 30, 2017

Sunday, August 20, 2017

Saturday, August 19, 2017

The long and the short of it

While in college I went over a year without having to wear long pants. All shorts all the time. I'm definitely not a fan of long pants (or ties). Since retiring about 3 weeks ago, I've gone the whole time in shorts. That alone makes retirement worth it. I do still need to add to my Hawaiian shirt collection. There's a place here in Long Beach that is always selling second hand shirts for ten bucks. Leslie and I have been meaning to get some.

This week coming up I am off to Chicago for a couple of days to sit on a panel to talk about the patience experience taking darzalex. Should be fun. The only downside is that it is business casual, meaning I have to break out the work slacks and a long sleeve shirt (also known as a full hands shirt per my buddy Shashank).

Week 3 was pretty nice. Where I did think about work a bit weeks 1 and 2. There was none of that week 3. Of course I was bit occupied. Monday was another MOHS surgery on my forehead. This one was a bit deeper and longer and was pretty darn painful Monday night. Friday was my monthly chemo. 5 hours no problem. Snoozed almost the whole time.

Still pondering what is next for me. I've got time to figure it out.



video



Sunday, August 13, 2017

Complete Remission

Dr B made the call the other day. No sign of myeloma in my blood or urine. He'd like to do a bone marrow biopsy to confirm. In the past he has poo pooed bone marrow biopsies as not telling us much. When diagnosed I had 80% plasma cells in my bone marrow. It would be interesting to see what it is now. I see Phan this week, so let's see what he has to say.

And what does complete remission really mean? I will keep doing my monthly darzalex and 21 days of pomalyst. No change there. But it means I am doing pretty darn good. It's funny that I hit this point two weeks after retiring. I retired to take care of my health and enjoy life while I feel good. But it did cross my mind that perhaps I could have worked longer. But I was done. All my energy went to work and not towards embracing life. I will say that two weeks of retirement and now the no visible signs of myeloma have led to some mental challenges and self evaluation. It's probably time to see the therapist to discuss.

I do feel great. I went on a short hike today and I am definitely not in the shape I was just a few short months ago. Still need to drop some pounds. Tomorrow I get my forehead stitches out, but I have another spot of my forehead that requires the MOHS procedure*. We'll have that done tomorrow as well.  Friday is chemo. Next week I go to Chicago for a couple of days to sit on a panel discussing the patient experience with darzalex.

* MOHS Procedure


Friday, August 4, 2017

Week One in the Books. Success

One week of retirement down, more to come. Monday was a mental challenge. It hit me that since being diagnosed this is truly my first real down time where I can process what cancer means to me and my life and what happens in the future. For six plus years, I've been hustling and busting my ass to keep things going. Now I can slow it down and check out life. It's an awesome and exciting and interesting and scary time. It could be a mid life crisis combined with a welcome to the world.

Sunday we celebrated at Hamburger Marys, a brunch/drag show here in Long Beach. Monday I spent a few hours at the Leukemia and Lymphoma Society, helping with their First Connection Program, which matches newly diagnosed patients with experienced patients. Tuesday I did my monthly myeloma labs in preparation for two doctor appointments next week; Berenson and my kidney doctor. Wednesday I kicked it at home and squeezed in a couple of naps, then went to a friends to swim and test out a retirement beer mug. We had three Matts in planning at the port and I was M1, which absolutely only represents that I was the first Matt there. Thursday I had another squamous cell carcinoma removed from my forehead. It's a non problematic skin cancer resulting from my lowered immune system and damage done as a youngster. Amazing how much of our younger days come back to haunt us later in life. It hurt like shit overnight, so tonight I rest and take care of some personal business. Oh then there's the bruised hamstring.

And that's the summary.













Saturday, July 29, 2017

All Done

That's it. All done. The counter reached zero. I'm retired. Today I'm working on my social security disability (SSDI) application. That is step 2. Step 1 was retirement. Multiple Myeloma is an automatic qualifier for SSDI. Nonetheless the on line application sure does ask for a lot of information.

My last days at work were good. I wrapped up what I could wrap up. I said goodbye to people, although I worry I missed a few folks. I'm thinking perhaps there is some kind of thank you that I can leave in the lobby of our..check that.. my old building.

Yesterday rummaging through a pile shoes for my last day, I somehow tweaked my left hamstring. The darn thing felt like it snapped and almost took me down to my knees. Feeling a bit better today. Of course, my first thought was that it figures as soon as I retire to maximize feeling good that my body starts to give out. Oddly the day before while sitting at my...old..desk my work id/lanyard broke. Curious timing.

It hit me last night and continues to hit me today that I'm done. Very odd feeling.





Saturday, July 22, 2017

1 Week, 5 days, 44 hours

This is it. Basically I'm done already . This week will be lunches, saying thanks to lots of people, continuing to leave files in an orderly fashion and on Thursday something is planned for me. Last week it hit me that I'm leaving and some emotions started to peculate up.

Early on in this cancer journey, battle, challenge, scare, what have you, I tried to keep going to work just to have a slice of normalcy and to not think about cancer. There were weeks where I'd be lucky to work 10 hours and that was a struggle. I've been back to full time for probably 3 years. It's time to hang it up. Right now my energy goes towards work and I need to redirect it towards myself. It'll be interesting and great. High 5!!!!!!!!






Friday, July 14, 2017

10 working days and it's gotta be Fran Tarkenton

The Vikings played and won their first game ever on September 17, 1961. This is 3 short weeks before I was born, hence the lifelong connection and love of the Vikings. They were led by Fran Tarkenton, one of the all time great quarterbacks.


I'm definitely winding down at work. Deleting files, organizing, transferring information, going to lunch, etc, etc. It's getting very real. It's a strange feeling, but it's the right thing. I can say myeloma-wise and energy-wise, I feel better already knowing that I'm going to be able to focus on health, fitness and enjoying life. I'm becoming a gooey blob, losing muscle mass and barely able to get more than 3 inches off the ground when I try to jump into the air. I've decided one of my retirement goals is to improve my vertical leap. As a youngster and at 5 foot 10 inches I was able to touch the rim on a 10 foot high basketball hoop. A big deal for a non athletic jewish kid. I doubt that can be replicated, but it is humbling when I leap now that I am barely able to create a gap between my feet and the ground.  So I'll strengthen the legs and drop some pounds and see how I much I can improve. I'm guessing the 6 years of dex is playing a role in losing muscle mass and gaining fat mass. Well, the dex and the ice cream.
http://www.mensfitness.com/training/pro-tips/4-tips-increasing-your-vertical-jump








http://www.startribune.com/vikings-rookie-quarterback-fran-tarkenton-got-the-best-of-bears-in-1961/398798671/

Tuesday, July 11, 2017

13!

13 working days.


- 13 is when a Jewish youth becomes an adult. I never had a Bar Mitzvah, which might explain some things.
- Apollo 13
- Dan Marino
- Baker's Dozen
- Wilt Chamberlain













Friday, July 7, 2017

Hyman Roth Godfather Part II

I'm a retired investor living on a pension.



15 Working Days

Recall that back in mid April 2011, I was already not feeling well. I'd been undergoing various tests to determine why I was so fatigued and weak and having horrible night sweats. My blood work looked not normal, but nothing jumped out at my primary care doctor. In the midst of all this, I went to Vegas for a friend's birthday. P.C. (pre-cancer) I went to Vegas about twice a year. Since my diagnosis, I've been twice and am way over due for a trip. I lasted half a day in Vegas on that trip at which point I broke out in a cold sweat, then was burning up and then had terrible shivers and shakes. I went to bed and rescheduled a flight home for the next morning. That second day, I was walking through the casino to get something to eat and had this powerful feeling that I was dying. It was overwhelming and so definitive. I'd never felt that before. Suffice it to say, it left me dazed and concerned. Back home, I was hospitalized, had a bone marrow biopsy, met Dr Phan and was diagnosed with myeloma. And there you have it, a life altering event.  As I approach retirement, I am realizing that this is the first time I've really slowed down long enough to ponder my life going forward. Up to now, it's been about staying alive, seeing doctors, working and being normal. But now I'm going to have time to do what I want, to be healthy and think about what comes next and where I have been.  Whew Wee, it's turning out to be a lot to mull over.


Note that I have made the same $100 bet every year since 1995 on the Vikings to win the Super Bowl. Sadly it has yet to hit. 1998 should have been the year. I actually had $100 on them to get to the Super Bowl and $100 on them to win. All I can say is I hate the dirty bird and I hate the falcons.


Note number two, the Bellagio Sports Book is the best. Plenty of screens and massive comfortable seats. Mandalay Bay is a close second, with the refreshing coconut scented artificial air being pumped in.


There are two ways to get to Vegas from LA. A short 45 minute flight is the best option.  Or you can make a 4 hour drive. This four hour drive can take twice as long coming home if you don't time your drive properly.


Note number three, it took me almost two hours yesterday to go 30 miles from my house to Berenson's office, simply to give research blood. Arghhhh!!!


Needless to say, I prefer the flight to Vegas. But if you do drive, you're taking Highway 15, which today is noteworthy given I have 15 working days left. I think today I work on my retirement to do list.





Wednesday, July 5, 2017

More Norm Snead


16

Norm Snead. 17 years in the league. 5 different teams,. First season 1961...also my first season.  One season with the Vikings...1971.  One winning season...1972 with the Giants. Wore number 16...same number of working days I have remaining. I am Norm Snead.







Friday, June 30, 2017

Work Email from May 11, 2011

I'm down to perhaps 19 working days. I've been grinding since May 2, 2011, trying to balance work, life, chemo, etc.  Myeloma wise I'm good. Otherwise I'm pooped and have had a whole bunch of annoying side effects that I've had to deal with since getting back from Kilimanjaro. It is absolutely time to slow things down.


As I clean out my office and delete or save files and emails, I came across an email I sent on May 11, 2011 to coworkers letting them know what's up. It's quite surreal to read it.....


Good morning,

I am guessing that some of you have noticed I haven’t been around a lot lately.  This is going to be the case for the next 5 or 6 months, where I am working a reduced schedule.  I debated doing a mass email to people and I debated not saying anything. But as a compromise, I wanted to get some of you up to speed.   And you can feel free to share this information.  But also please note that I want this to be low key and somewhat of a private thing.  Plus, believe it or not, coming to work when I can, is a good thing. 

Having said all of the above, here’s the story:

A few months ago, I started to feel weak and fatigued, with an assortment of other weird things going on.  After lots of tests and doctors, I got a diagnosis early last week. I have something called multiple myeloma.  It’s a bone marrow cancer.  I already started chemo….twice a week with every 3rd week off. This goes on for 6 months. So far, I feel pretty good.  If you decide to do some googling, be careful…the typical patient is over 65 and African American male.  So statistics on this don’t necessarily apply to me. I can stay as active as I feel up to.  I am not riding my bike to work though, which sucks. I get too tuckered.

And I think that is it.

Matt