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. 


Lights with assorted underwears.

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

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.

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.

Inching Towards Seven

In less than two months it will be seven years since my myeloma diagnosis. That means that more than 12% of my life has been spent with myel...