The Leukemia and Lymphoma Society's Light the Night event is virtual this year. I've joined a team to honor Tom Swick, a friend and patient advocate who lost his fight with Multiple Myeloma earlier this year. The LLS is a vital organization to all blood cancer patients and Tom dedicated as much time as possible to the LLS to help and support fellow patients. I know these are challenging times, but if you can please consider donating to my team at the below link.
Tuesday, October 20, 2020
Tuesday, October 13, 2020
Car-T is the next and greatest thing for blood cancer. My opinion is that it's not quite there for Multiple Myeloma. But what do I know? Not a lot.
Patient Power has a webinar this Friday October 16 on the latest news on Car-T for MM. Here's the link to register:
Thursday, October 8, 2020
I was 49 when diagnosed. I'd never really been sick before. I was riding my bike to work every day, 20 miles round-trip. Life was grand. Then BAM. A major life change smacked me right up in my grill. My goals since diagnosis have been:
- live for two years
-live for five years
-keep it going for a long ass time.
As I hit 59 years old and rapidly approach 10 years living with this disease, I'm planning to keep it going for a long ass time. Let's review the latest and greatest. But first, the import stuff.
49 for the Vikings is Ed Marinaro. He was the runner-up for the college football Heisman Trophy in 1971. He played 6 seasons for the Vikings, including playing in two Super Bowls. After football, he starred in Hill Street Blues. Also of note, in the early 1980s, as I mentioned many, many posts ago, I had a huge crush on Lisa, who years before was a regular dancer on American Bandstand. Sometime before her brief time "dating" me, she dated Ed Marinaro. That absolutely got into my head. Lisa was best friends with Debbie, who passed away from myeloma a few years ago. Debbie was great friends with my Uncle Jan, who I worked for in the early 1980s driving a truck. I loved the freedom, but driving motivated me to go back to UCLA.
59 for the Vikings is Matt Blair, who played outside linebacker for the Vikings from 1974 to 1985. He was a key component of the Purple People Eaters and really really ought to be in the Hall of Fame.
Now let's get to business. I'm turning 59. My 50's have been a whirlwind and a blend of crap, lessons, ups, downs, and lots of self talk. Putting the global pandemic aside. 2020 has been a shit year. The loss and heartache has a whole lot. It goes without saying, but I'll say it anyways, losing Gracie continues to weigh heavily on both Leslie and me. I carry guilt and pain. It's been suggested by a host of folks that getting another dog would help the pain. I agree. But I am definitely not ready. It's gonna take time and it's gonna take a change in scenery. Before Gracie, there was Hurricane, who also went way too soon. I'm not one for curses and evil spirits, but I'm leaning towards the previous owners of my house leaving some kind of bad juju in this house. Seriously. And this year, I've lost friends who meant a whole lot to me and were beautiful people.
Also to the folks who got worried about me based on a couple of previous posts. Absolutely I am fighting depression. But also absolutely, don't worry, I am fine. Times are challenging. Most of the time I am positive and as carefree as possible. As possible is the operative phrase. As possible seems quite challenging of late. But I'm walking a lot and doing a lot of self talk and being more open with key people and it's getting me through.
Myeloma-wise I'm in great shape. I've postponed two months running a bone marrow biopsy from Berenson, which will give us a baseline on plasma cells in my marrow, while I'm at my best. But, I'm doing so many darn tests for the rheumatologist and having a couple of skin cancer removals, that adding drilling into my hip seems like something I can put off for another month or so. Yes, I feel great. But every 3rd or 4th day I have body aches, fatigue and general feeling yucky. That's what the rheumatologist is trying to get to the root of. I will say that the aches and such do slow me down but don't really stop me from doing anything. Nothing that a 2 hour nap can't take care of.
My vision keeps changing. My current prescription definitely isn't sufficient. Two years ago, I got progressive lens which have been life changing, but again with the pandemic and all the other medical stuff, I'm not inclined to go in for an eye exam.
Leslie continues to keep me safe. Chemo brain has absolutely set in, meaning short term memory is fading. She keeps me honest and safe. I miss my mom tremendously. She's now in Colorado and I'm trying to figure out when and how to visit sooner rather than later.
The Vikings..don't ask. I almost abandoned them this summer, but I couldn't do it. Instead my love/obsession is stronger than ever. They kind of suck this year, but that's ok. That's my team. Last week we met a server at a local place where we got food to go. He was born in Russian, raised in Minnesota and now lives here in California. We had a nice chat about the Vikings last Purple Friday and I've decided that at some point in time, he's getting all my Vikings memorabilia. He doesn't know it, but I know he'll give it all the home it deserves. I'm not sure when the gifting will happen. Probably not for a while.
I met an amazing 86 year woman at Dr Phan's this week. The bluest eyes I have ever seen and an attitude that really touched me. I could have spent the whole day with her, but no such luck. I briefly met her son in the waiting area. And I guess that's part of the cancer journey....the people. It's the people that keep me going and motivated and remind me that I'm actually doing a kick ass job. Myeloma is no smooth sailing, physically and emotionally. I'm in an emotional trough right now, but working my way out of it. Nothing that a couple of birthday beers can't help out. We're doing a belated celebration with Matt and Rich in two weeks. They've totally been quarantined, working from home and not going very many places. But with all my doctor visits of late, I feel it's best to stay away for two weeks, just to be safe. But believe you me, come October 23, we will be celebrating.
And that's my story. Blah, blah, blah. Not too thrilling. Not too exciting. But we live to fight another day. And remember: Wear a Damn Mask and Vote!!!
Monday, October 5, 2020
Friday, October 2, 2020
It's darn confusing.
Two great organizations that I turned to for help in understanding were: Triage Cancer and Cancer Legal Resource Center. Both have upcoming webinars on insurance and Medicare. Here are links to those important sessions:
Triage Cancer: How to chose and use your health insurance
CLRC: Health Insurance updates and open enrollment for 2021
Also know that the Leukemia & Lymphoma Society and Healthwell Foundation have copay assistance & prescription assistance programs.
Friday, September 25, 2020
COYOTE ON THE RUN
EXT RESIDENTIAL STREET - EARLY MORNING, MINIMAL SUNLIGHT
Matt walks silently along a quiet street. It’s early enough that not many people are out. Matt stops, squints and focuses on a small animal crossing the street up ahead.
MATT (IN LOW TONES TO HIMSELF)
What the fuck is that. God damn it,
why do people let their dogs out
As he gets closer, the animal gets to Matt side of the street and spots Matt. They stare at each other.
Oh shit, it’s a baby coyote.
What’re doing here?
The coyote is spooked by Matt and runs back across the street, just as a car comes roaring down the quiet residential street.
Shit, careful pup!
Matt picks up the pace and watches the pup get safely to the other side of the street. The car continues on, none the wiser. Matt crosses the street to see where the coyote went. He reaches for his cell phone.
Fuck! Where’d you go? I guess I can
call animal services and then what?
They put it to sleep.
Matt searches down walkways and various yards. He can’t see the coyote puppy. He stops and sits down on the curb. He leans forward and puts his head in his hands. Tears flow. Eventually he looks up and stares into the distance. The sun is almost up and he’s got a mile walk left to get home. He gets up and continues on, the unused cell phone in his hand.
Well great, one more thing to feel
guilty about. So much damn loss.
EXT MATT’S HOUSE - MORNING
A man on a recumbent bikes rides by Matt and waves hello. Matt gives a half hearted wave, followed by a subtle middle finger.
Matt walks into his house. Leslie is in the kitchen, making coffee and cooking some eggs.
What the heck? What are you doing
Um..good morning to you. I’m making
breakfast. What’s up with you?
Fuck, that guy on the bike. I hate
You know we should try and be nice
to our neighbors. You know, keep
I know. I am. But fuck that guy. He
gave Gracie treats, and is always
up in my business, with no mask.
And then he sweeps the street
before the street cleaner comes.
He’s a fucking weirdo and needs to
stay out of my business.
So you had a good walk?
Sorry, everything has me on edge.
I know, it’s tough.
The coyote is still on Matt’s mind. While Leslie is talking, he starts thinking about loss and his ability to handle animal loss, which has become almost paralyzing.
Wow, you really don’t listen to me.
Sorry, two pieces of toast.
That’s not what I asked. I asked if
you’re having coffee.
Oh...nah. I already did earlier, it
got everything moving. Anyhow, I’m
taking a shower. Real quick.
INT. DINING TABLE
Matt and Leslie sit and eat. The news is on the tv in the background.
Can we change that?
Oh for sure. How about music
EXT. - LATE MORNING
Matt pulls up to a small medical facility. Leslie opens the passenger door and gets out.
Good luck. I’ll be here.
Thanks love. Shouldn’t take too
Matt reaches for his Kindle in the car’s door pocket. He starts reading. Leslie knocks on the door. Matt jumps a bit and looks up. He unlocks the door.
Damn dude, I was knocking for two
Oh sorry, I’m into this.
Leslie gets in the car.
What is it?
Thoreau. An essay on walking. It’s
Ok well, sounds great. But you
ought to be more aware of things
around you. Head on a swivel.
Sorry I seriously thought you just
Nope. It was 10 minutes ago, very
Matt starts the car.
Ok, where to. Fish sandwich?
I guess, but I’m not sure about 2nd
Street. But let’s check it out.
INT. - MATT’S CAR
They’re driving slowly, his cell phone rings on the car’s bluetooth.
Can you get that? I think it’s
VOICE ON OTHER END
Hi can I speak with Matthew
Hi this is Leslie.
VOICE ON OTHER END
Oh hi, it’s Susan at Cedars.
Yeah, hi Susan.
VOICE ON OTHER END
So, I know you guys are coming in
for some tests on Monday, but...and
I’m so sorry...I need to change one
things. Our one machine is down.
Ok, which one is it?
Leslie reaches to the back seat of the car and grabs a purple notebook and flips to a page with the heading Rheumatologist.
VOICE ON OTHER END
Well, I know we had three tests
scheduled, but the bone scan
machine is down and we need to
reschedule it. The other tests are
Leslie looks at Matt as he drives. He rolls his eyes. She shrugs her shoulders.
That’s fine. When can we do it?
VOICE ON OTHER END
Um, looks like the soonest is Oct.
The day after your birthday?
I don’t care, whenever. But now
we’ll have to change other
Hi Susan. Sorry. Yeah that works.
VOICE ON OTHER END
Sorry about that. I know you guys
are coming a distance and wanted
them all on the same day
No that’s fine. Thanks for letting
us know. That’ll work.
Leslie ends the call and looks at Matt.
So....how have you been feeling
Not bad. Good days and so so days,
but it can wait.
Alright, well let’s get something
to take home to eat and then I’ll
call and move things around.
Cool. Thanks. So listen here’s a
Leslie’s eye brows raise a bit.
How can I go off the grid if I
always have these appointments and
Oh no, don’t look.
Matt sees a dead raccoon lying on the side of the road. Tears well up in his eye.
Ugh. Poor thing. I can’t handle it.
I know. It sucks. We’ll say a
prayer for it. Ok focus on driving.
So what did you ask?
Well, this morning walking I saw
another sign for the idiot. What
the fuck. Can’t I just paint over
Well, you know, you really need to
be incognito. Wear all black, go at
night and have an exit plan.
Everyone has cameras now.
Ok, well let’s figure it out.
You mean, you’ll figure it out.
So, what if I just stopped all my
treatment, let things go and become
Well, this shit is tiring. I mean
I’m doing fine, but ten years of
all this is wearing me out. Plus
look at me...I’m a freaking old man
now. I can’t even wear short
sleeves, all this bruising and
I know baby, we’re all getting old.
Look at me, everything hurts.
I don’t know...I’m just talking.
INT. - LUNCH HOUR
Matt and Leslie stand at the counter of a small fish
restaurant. They all have masks on, except a couple of people outside the restaurant.
What’s with the huge guy blocking
I don’t know. What do you want?
Umm..give me the salmon sandwich
and can we get a beer while we
That works. Let me order. Why don’t
you wait outside. There’s a table
with no body around.
Matt walks outside and leans up against a table. He reaches in his pocket and checks his cell phone for messages.
There is one message that says: Missing bloody marys and video poker. Matt types back: 2021?
Hey, here’s your beer.
Ah, thanks. Wow, it makes me
nervous here. We’ve both become so
Yep. Well, let’s drink this, get
our food and get home and watch
And here’s to Gracie.
They both hold their glasses towards the sky.
Cheers girl, we miss you pup.
The Leukemia and Lymphoma Society's Light the Night event is virtual this year. I've joined a team to honor Tom Swick, a friend and ...