Wednesday, March 3, 2021

10 x 10 Virtual 10K to Raise Funds for Myeloma Research

 It's here! we're less then two months away from my ten year anniversary of my diagnosis. I've created a virtual 10k/fundraiser to raise dollars for the Institute of Myeloma and Bone Cancer Research.

 The goal is to remain $10,000 in honor of ten years of survival.

 Click here to sign up for a Virtual 10k or to simply donate.

 thank you all for the support over the years!!!!

Monday, February 8, 2021

Memories in the Countdown to Ten Years

This photo was taken in February 2011. I was on a memorial bike ride in honor of a Long Beach resident who was instrumental in promoting bike paths in the city. I worked with him on a number of projects. The ride's completion was at the top of a bridge in the port that was slated for replacement. The new bridge would include a bike path and a scenic overlook. I took many people on bike tours to the top of the existing bridge and around the port. I also rode my bike to work every day, ten miles each way. My daily bike commute began to get a bit more challenging early in 2011. It began getting difficult to catch my breath and I didn't have my usual burst at the end of my ride. I just thought I was getting older and out of shape. But on this memorial ride, I couldn't even make it to the top of the bridge that I'd ridden dozens of times. A local professional rider had to push me to the top.

Soon after this ride I went to my primary care doctor and the adventure began, including an April hospitalization for anemia and failing kidneys and eventually my May 2, 2011 myeloma diagnosis.



Monday, February 1, 2021

what Up 2021. ok boomer

What does it mean to be a Libra?

With a symbol of the scales in the zodiac, the sign of Libra is the sign of justice, balance and harmony. ... Libra's are highly intuitive, although they often ignore their own inner voice and must live with the regrets of such actions.


 

 Its my first real update of the new year.  The Myeloma remains under control. This Friday is my monthly Darzalex infusion and I'm not looking forward to it in the least bit. For most of the pandemic I actually looked forward to the 5 hour drip, once in a month. I'd get loopy from the giant dose of benadryl. I'd chat with a friend. I'd nap, watch a movie, read and be alone with my thoughts. But, the thrill is gone. First of all, my left leg twitch after my Dex is annoying as heck and makes it hard to get in a comfortable nap position. Plus it's getting a bit too loud and busy in the infusion room. Too many people, too much cancer. I prefer quiet. And most importantly, I'd rather get loopy, chat/not chat, nap, watch a movie, read and be alone at home. But, the potion continues to work like a charm, so I suppose I can tolerate five hours once a month. Darzalex can now be adminstered sub q, i.e. a shot in the stomach. It's a slow administration, five minutes, and with the check in time, waiting, I could be in and out in an hour. I'm a creature of habit when it comes to my treatment, so I'm not gonna change to the sub q any time soon.

 May 2 is coming up. Kicking off on February 21, we'll be doing a virtual fundraiser to raise money for the Institute of Myeloma and Bone Cancer Research. Feb. 21 marks the 10 week countdown to May 2. May 2 will be the ten year anniversary of my diagnosis. It's called the Virtual 10 x 10 x 10....10 years, 10k and $10,000.  The 10 k can be completed any way you like. Walk, run, drive, imagine it. And it can be done in segments. You've got ten weeks to complete it. My goal is to raise a minimum of $10,000. Ambitious, but doable. 

 It's pretty wild that I'm hitting ten years. Wild in a good way. Truly I'm pleased as punch to get to this point and pretty fortunate to be doing as well as I am. I've got some loose ends to take care of and ten years isn't enough. But ten years of cancer, a year of quarantine and nearing 60 years old make me relatively ok with things.

For many years, my top five of favorite animals has gone like this:

1. Dogs.

2-Infinity. All the rest.

Reading Carl Safina motivated me to change my top five. Of late, the list has been:

1. Dogs

2. Whales

3. Wolves

4. Beavers

5. Macaws tied with Donkeys)

However, I'm reading a book called Coyote America by Dan Flores. It is an amazing read and has accomplished two things. 1. Moved Coyotes to number two on the list. (Beavers, Donkeys and Macaws now share number 5). 2. Informed me that Coyotes are my spirit animal. I didn't know I was looking for a spirit animal, but I have one now. 


 
 

Note, I walk a lot. The unofficial sponsors of my walking are Altra Shoes and Osprey Packs. We live near Cal State Long Beach, which has gone virtual, so it's the perfect place to walk and be away from cars and non-mask wearers.Critters have taken over the university and on my walk I see various animals including skunks, raccoons, and coyotes. The coyotes are interesting. One moment they are there and the next they are not. I'm making a habit of imagining meaning in various things, and I wonder if I'm really seeing them. Also curious, Coyote America references Moby Dick, which I also happen to be reading currently. ooohhh, what's that mean? Continuing in the curious realm of things, I often see things moving in my periphery that aren't really there. Don't worry, I'm not losing my mind, I think my glasses are pretty much consistently dirty, largely due to mask wearing. I digress.

What else is going on? I haven't had a vaccine yet. It may not it even do much for me, but I'll get it as soon as I can. I completed a lunar lander lego model. I'm cutting out carbs big time. I really need to trim down. I can't drink IPAs much anymore, they give me horrible headaches. It's pale ales for me now. I'm bruised all over like crazy. Fucking steroids suck, but gotta stick with them. I feel good though. I miss Gracie powerfully and Leslie and I are both still mourning. I feel her presence in the house quite often. But as I said before, I'm fairly certain there are bad spirits in this house and I wouldn't even consider another dog till we live somewhere else. Living near a freeway and on a busy street are not good for human and animal health. I suppose I'll watch the super bowl. It's not the Vikings, but that's cool. I'm rooting for Kansas City. I finally mastered matzo bowl soup. I have not learned a language, a musical instrument or astrophysics during the pandemic. Two out of these three are on my list though. Maybe I'll get to them in 2021.



Oh shit, how could I forget?! I binged the Mandolorian. Loved, loved, loved it. I'm not even a Star Wars person, but the Mandolorian kicked ass. So good!!!!



 

 

 

Wednesday, January 27, 2021

From Cure Magazine: Appointment Fatigue is a Real Thing and Here's How to Manage It

Here's a good read about a real topic. If I can go one week with zero appointments, I'm happy. If I can go two consecutive weeks with zero appointments, I'm ECSTATIC.

Appointment Fatigue is Real

Tuesday, January 12, 2021

Wednesday, December 30, 2020

New Year, New Shmear. Big Whoopty Do

 

 Well, well, well. Happy holidays and happy new year.  New Years Eve of all holidays is probably my least favorite. I mean, I'll take a celebratory Arbor Day over New Years Eve any time. New Years Day? It's ok I guess, because of football. But that's not even the same this year. So we'll be low keying it. Really I'm just glad that 2020 is fricking over. This year has been one huge piece of do do.  Myeloma-wise I'm fine and dandy. Feeling good. Mentally, I'm good. But I will say that as I rapidly approach 10 years since diagnosis, my general approach to everything has morphed drastically. Having said that, I'll do what I need to do to keep this good run going. But, meh, is it normal for a nearly 60 year old to be having an existential crisis? And what really matters to me?

May 2 is that ten year anniversary. I'm figuring out how to do a virtual fundraiser for Berenson's non-profit research arm, The Institute of Myeloma and Bone Cancer Research, IMBCR. I'm almost there with setting it up.

Um, I really don't like writing about or thinking about myeloma. As I said, I'm doing well, but survivors/doing well guilt is pretty intense.

I continue to have increasing incidents of what you might call spiritual how do you do's. Definitely gets me thinking. I'm not going to start preaching or anything like that, but it's likely I'll be more thoughtful and deliberate about my actions. Put aside the previous paragraph for a moment and I'll say it's fairly miraculous that I'm still alive and kicking and I'm not going to ignore that fact, and I should maximize the gift (good luck) that I've been handed. 

And that's all I got. Oh..this past summer I debated abandoning the Vikings. I couldn't do it. But I no longer sweat each game, instead I embrace the interconnectedness of my life with the team. We are one. One are we.

Well, hope you all are well as can be. I appreciate you all tremendously. Hugs and love. 


 



 


Friday, December 18, 2020

A Pandemic Chanukah

Before I get to the good stuff, an update. Berenson did a bone marrow biopsy last week. He called with the results just as Leslie and I were lighting night one Chanukah candles. The timing was serendipitous, perhaps even miraculous, much like Chanukah. Turns out I am in complete response. No detectable myeloma in my marrow. For context when I was diagnosed nearly 10 years ago, my marrow was 70% myeloma. It's an understatement to say this is huge news. This is the best condition I've been in since diagnosis. 4 years on darzalex and pomalyst are still doing the trick. Having said this, I still have to do my usual treatment; monthly infusion plus daily chemo pill. That's the nature of myeloma. It's hiding somewhere at a cellular level. The goal, therefore, is to keep the current regimen working as long as possible.To cap it, though, I feel great.

Also of note, in May 2021, it will be ten years since that fateful day. It'll be a big celebration no doubt and I'm planning to raise some money for the Institute of Myeloma and Blood Cancer Research, which has been instrumental in me being alive and kicking. More on this in coming weeks.

With that out of the way, on to the important stuff.. For most of my adult life, I've lit the menorah for Chanukah, but not really knowing why other than it's tradition. Last year I made my own menorah. This year, I made a new menorah and since we're on lockdown here, we decided to do a deep dive into Chanukah, family history and tradition. It became a virtual family celebration and was special beyond words. With that, here are some photos from the past 8 days. 

Matzo Ball Soup Prep

Deep Fried Pickle Latkes

Regular and Deep Fried Pickle Latkes

Custom Menorah

Night 1

Remnants of night 8

My Great Grandfather Papa Jake, circa 1934 in New York

My Great Great Grandfather, Shopsa, circa 1880 in Poland


10 x 10 Virtual 10K to Raise Funds for Myeloma Research

 It's here! we're less then two months away from my ten year anniversary of my diagnosis. I've created a virtual 10k/fundraiser ...