Thursday, August 30, 2018

Kicking it

The foot is doing much better, but we're making custom inserts to protect the sensitive area. Baby the foot.





Tuesday, August 28, 2018

A Post from 1 Month before Retirement

I wasn't necessarily looking for this post, but I came across it the other day. It's from one month before I hung it up at work. Nowadays I can take a nap if I get tired and I'm not trying to do it all.  I forget how fricking tired I was all the time:

Tired, Tired and Tired

Lately I've been so fucking tired. It's getting fucking ridiculous. Berenson tested my thyroid and testosterone which both can be impacted by long term steroids and chemo. Both tested fine. I started pomalyst when I started darzalex and we've lowered the dose twice because it was tiring me out. But I've been on the low dose one meg for a few months and it's only in the past month or two that the overwhelming sleepiness has hit me. It's pissing me off. Thank goodness I only have a month more of work. Afternoon are getting real challenging. This weekend, I don't even know how much I slept, but it was a lot.  My myeloma numbers are great, so I'm thinking this could be the result of 6 non stop years of treatment. I'm feeling like an old man. I'm losing muscle mass, getting flabby and super cranky all the time. Plus my eyes are getting worse, hearing is on a decline, my ability to focus on one thing sucks and I continue to bruise and bleed with the tiniest little bump or scratch.  I'll tell you what, this myeloma is no joke. It's the gift that keeps on giving. 


Sunday, August 26, 2018

How Deep is the Lake




I thought about titling this post : When do I stop giving a fuck?  I just spent a few days in Lake Tahoe visiting my nephew and his wife, with a bonus: my nephew's father was there. We had an awesome time. Hiked. Ate. Gambled. Drank. Sat by the pool. Most important was the family/friend time. As I get deeper into my myeloma journey, I have fewer friends and am generally not too interested in hanging out with other people. I get pretty frustrated how people think I am fine and forget about the whole cancer thing. (e.g. too numerous to give just one) Yes, I live pretty normally and am doing really well, but not a day passes that myeloma doesn't somehow dive into my life. Throw it all into a blender and Matt time is pretty key nowadays. My Tahoe visit was a welcome break. And it was a glimpse into how I should be living with very few fucks to give.

I learned that no one has really explored the depths of the lake. At the surface, it is at 6,225 feet. It's depth is around 1,600 feet. Legend has it there are a lot of mob bodies at the bottom. I came across this article: What's swimming in Lake Tahoe's depths? Someone did explore the bottom a bit and came across a fish that had some shark characteristics. Well that would be frightening.

In my 30's and into my 40's I didn't pay a whole lot of attention to grown up stuff. I didn't think too much about retirement, health care, and all the stuff that goes hand in hand with getting older.  Sure people tried to talk to me about these things, but I didn't particularly listen.  I used to make two trips a year to Las Vegas. I wasn't a crazy gambler, but I did like to make things exciting. In fact, and as I've said before, I was in Las Vegas when I got the most sick a couple of weeks before being diagnosed. Walking through a casino the morning after a frightening fever and a bout of chills, I had a strong feeling that I was dying.  It was the first of what has become many intense gut feelings. I've been back to Vegas twice since being diagnosed. It's been a few years, but both times I wasn't yet feeling myself and I didn't totally enjoy the trips. This recent trip to Tahoe was nice because I do feel so good, and it was basically 3 days of not even thinking about myeloma.

I am quite aware that a large reason I do feel as good as I do is because I'm not working. I know I am quite fortunate to be in this position.  But it's a duel edge sword. There are times I feel so good that I think perhaps I could have worked a bit longer. And I know there are folks are struggling much more than I am and I should just suck it up and work (see Survivor's Guilt). Somewhat rationally I know that is somewhat ridiculous, that if I were working full time my quality of life would take a big dive and I'd be drained 24/7.  I have my pension and I'm on social security disability. Myeloma is on the list of automatically qualifying for disability.  With this I can earn $1,180 month without impacting disability.  I have a chance to do some part time consulting with my old job. On one hand it wouldn't take too much time and would be nice to have the extra income, but on the other hand I want as few responsibilities as possible, including not wanting to wear slacks and button down shirts. I busted my ass for seven years to keep working and to stay on top of my myeloma. It was exhausting, physically and emotionally.  I felt like I had to work extra hard so folks wouldn't think I was impacted by my disease. I might have done too good a job, because, frankly, there were times a few years back where I felt like our human resources was my enemy and preferred I be sicker and not showing up to work. Reasonable accommodations was not a concept that was bandied about.  It got better, but this was also a function of me feeling better.  So yeah, it's nice to be wanted and I do have some ownership of my old job, but I'm not 100% certain I want to go back even on a limited basis.  I do need to decide quickly. I'm meeting with my old boss this week, and he's awesome, but I need to have an answer for him.

On a bigger scale, this opportunity is really a test of how I want to live my next/last 1 or 5 or 20 years.  I want to not give a fuck about much.  I want to enjoy each day and basically do whatever the hell I want. I found out in Tahoe, I hold back a bit. I'm not as carefree as I was 20 years ago, but then, who is. This is a little maddening. Now, more so than any other time in my life, I should be living carefree.  Arghhhh! It's a challenging balancing act. Again, I understand that I'm super fortunate to be in the position where I can think like this. But if you throw in the remnants of my dream in March when I began to wonder if I am already dead and basically in a kind of purgatory, and I'm in a mental maze. I'm working on it. And don't get me wrong, I'm enjoying life and feel good, but I want to have some sort of road map.  It's like I know Lake Tahoe is deep but I'm not quite sure what's at the bottom.

Yesterday I hung out with Leslie and a couple of friends back here in Long Beach. It was awesome and gave me a chance to hear other perspectives on the meaning of life. Today I am going walking with a Kilimanjaro friend who lives near by. So there is a balance out there. As a Libra I'm all about balance (aka indecision?)


Wednesday, August 15, 2018

H.R. 1409 Cancer Drug Parity Act

I've created a petition to the House Energy & Commerce Committee's Health Subcommittee, urging passage of HR 1409. Please consider signing.

Tuesday, August 14, 2018

Words or Lack Thereof

Not really a whole lot to report. Last Friday was my monthly darzalex infusion.  I also take 1 mg of pomalyst for 21 days with 7 days off.  We're approaching  two years on this regimen and it continues to work pretty darn well, No light chains, low m spike, kidney function tremendous. We've got my dex dosage down to 12 mg that I get with my infusion. My crashes aren't as bad as they used to be when I got a higher dose, but they still happen. Sunday and Monday I'm moody, irritable, and slightly depressed. Today is Tuesday and I'm all done with that nonsense.  Berenson has me also taking an oral steroid, medrol, at a low dose, every other day and it's pretty innocuous.

Leslie was out of town for a few days, so I had the house to myself. Gracie napped in random cool spots in the house and I binged on 23 hours of Handmaids Tale. I read the book last month and had to see the show. It's powerful and a little frightening. I got home from the doctor after treatment on Friday and hardly left the house until picking Leslie up at the airport. I had food delivered, roamed the house and hardly spoke a word for those few days. Fairly soothing. Oh and let's not forget I did watch the Vikings first preseason game of the year. They looked pretty darn good, although preseason isn't always a realistic gauge. I can guarantee by week 1 of the regular season I'll be in full on this is the Super Bowl season mode. 

Health wise I'm good. Staying fit. Warts are under control. We did x rays on my aching neck and there is really nothing new there. Osteoporosis, some degenerative disc issues. Nothing horrible and I think I've got a handle on it. I still need to add yoga to the mix. There is a beginners class tomorrow night that I'll try and make it to. Been walking a whole lot, so of course my foot aches. I have a follow up with the foot doctor later this week.  Some inserts might be all I need. I'll be 57 in a couple of short months. I can't believe it, although I've said before that this here myeloma has fast forwarded my internal clock. Old age isn't far away. 

I've come to grips with the unknown and now am just focusing on living my best life. Cliche, but true.  Next month I'll be taking an on-line course through the University of Minnesota, which, if you know me, will help fulfill a lifelong obsession/love affair with the State of Minnesota. Started with the Vikings and blew up from there. On my laundry list of oops, you can include not applying to the university when I was looking at schools coming out of high school.  I've got my class choice narrowed down to a history of landscape architecture or a course on renewable energy. They both sound interesting, but I'm not sure which I'll take. Taking both isn't an option. 

I've got a new therapist which is fantastic.  She is definitely helping me with guilt, regrets, identifying who I am, not being bitter and embracing life. Like I've said before, not working has given me a bit too much time to think and I'm feeling like I need to get back to Matt. What is Matt? Hell if I know. 

Going to Lake Tahoe in a few days. I'll see my nephew, do some hiking, gamble a little bit and have a cocktail or two by the pool. Next month it's off to Colorado to see my mom and brother.

I'm still volunteering for the Leukemia and Lymphoma Society on their First Connection program which connects newly diagnosed blood cancer patients to someone who has experience with the same cancer.  It's an awesome program.  I've cruised past 7 years since being diagnosed and just recently experienced survivor's guilt. What the hell? Let's add to that the mix.  I've heard about it. And now it has hit me. The therapist will hear about this tomorrow. Chemobrain is in full force. My ability to focus and recall names or things is hugely impacted. It was funny at first, but now it's pretty annoying. 

Wrapping up Trevor Noah's excellent Born a Crime and moving on to Spying on Whales by Nick Pyenson, which I'm super excited to dive into. 

And that's my update.

Saturday, August 11, 2018

Latest Cycle Underway

And we're off. This month's labs look great. So yesterday was my monthly darzalex infusion. Super busy at Phan's office and I got there later than usual so it was a long day.  Interesting factoid...each darzalex infusion is about $14,000. I get copay assistance from the manufacturer, Janssen, plus my out of pocket from my insurance caps at $2,650 annually.  Also started my 21 days of 1 mg of pomalyst, which is an oral drug and gets shipped to my doctor's office. Factoid two is that a 21 day supply of pomalyst is about $17,000. I am extremely fortunate that via my insurance I am obligated to only pay $40 for the one month supply. I do get copay assistance on this as well from Celgene the manufacturer and end up paying $25/month. Factoid 3 there is not a monthly cap on oral chemo costs to the patient.  More and more chemo drugs are becoming oral. So folks are going bankrupt trying to pay for their oral chemo or they don't take them as prescribed.  There is a languishing bill, H.R. 1409 Cancer Drug Parity Act of 2017, in the House Energy and Commerce Committee, which would make it so there are out of pocket caps for oral drugs just like with the infused drugs. Why it's not moving is anyone's guess. Although it doesn't take a lot of thought to come up with a potential reason.


Friday, August 3, 2018

Trip Down Memory Lane

My very post.

Saturday, May 21, 2011
I should have stretched

On May 2, 2011 I was diagnosed with having Multiple Myeloma. My girlfriend Leslie and my mom were with me when I got the diagnosis. It's a bone marrow cancer that severely impacts my body's ability to produce blood. I'd been real fatigued for about 3 months and tests after tests came up with nothing. Finally I was hospitalized for a blood transfusion, and a bone marrow biopsy identified the problem.

The typical patient for this type of cancer is someone over 65 years and an African American, of which I am neither. I'm 49 and Jewish.

How did I get this cancer? We might never know. But in thinking about things, I wonder if my years of never stretching had something to do with it. All my life I've been pretty active...running, cycling, hking, gym, etc, etc. But I've never been a stretcher. Friends told me it would catch up to me. When I'd go to the gym with my friend Jenni, she'd stretch and I'd just stand there and tell her that Jews don't stretch. My nephew Dillon stretches several times a day and believes that is a real key to good health. Well, for him, good heath is stretching, trigger points, and coconut oil. He was actually visiting when I first started feeling weak. We just assumed I was getting old and out of shape.

People weren't kidding when they said it would catch up to me. I should have listened. Anyhow, this blog is the story of my adventure of battling the disesase. I have already started chemotherapy. And my calves are already smaller from the lack of physical activity. But I am about to start working out again. Doctor says I can do as much as my energy allows me to do. I'm also continuing to work part time.

It's going to be quite a ride.

87 plus 1

87 months and 1 day since my myeloma diagnosis. Let's recognize Mike Tice, one time Vikings tight end and head coach.



The Push for Oral Parity

We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409.  Fresh off the pr...