Monday, September 9, 2019

An Update in Images

Approaching 3 years on Darzalex & Pomalyst. Absolutely the best regimen I've been on. Working great. So what's new? Well check it out...








Wednesday, August 28, 2019

Five Lies We Tell Ourselves about Trauma

Jason Kander was a rising star in the democratic party. He walked away from it a couple of years ago to deal with his PTSD resulting from his time in Afghanistan a decade ago. He's a pretty amazing person and is now actively working with veterans to help them deal with issue of trauma.  The link below is from crowded.com and has some carryover to cancer survivorship.

Five Lie We Tell Ourselves about Trauma

Cancer Can Feel Like a Ticking Time Bomb

From Cure Magazine, which by the way is a great, free publication that is helpful to patients and caregivers.

Monday, August 12, 2019

I am Stretching (I Should Have Stretched Part 2)

Irony: a state of affairs or an event that seems deliberately contrary to what one expects.

Coincidence: a remarkable concurrence of events or circumstances without apparent causal connection

My very first post on May 11, 2011 was titled I Should Have Stretched. This was written 9 days after I was diagnosed with Multiple Myeloma and with zero idea of what lay ahead.

About two weeks ago, I got out of bed and felt a horrible pain in my lower back that shot down my left leg. I attempted to walk Gracie as I do and barely made it down the street. For myeloma patients, the fear is that our bones are damaged by the disease. For me, I was severely kidney impacted but my bones were fine at the time of diagnosis. The kidneys are much improved and my bones continue to be ok, except for the osteoporosis resulting from 8 plus years of steroids. Not to mention my ever decreasing eye sight, thin skin, muscle loss, etc, etc all from those damn piece of shit steroids.

In April 2011, I went to Las Vegas for a friend's birthday. I was reluctant to go given I'd been severely fatigued for the previous 2 or 3 months, with nightly fevers and sweats. I lasted 3 hours in Vegas before I started shivering and burning up, like never before. I went straight to my hotel room, crawled into bed and lay there thinking I was going to die in Las Vegas right then and there. The next day I flew home, Two days later I was in the hospital for severe (there's that word again) anemia. 7 days later I was diagnosed with myeloma.  8 years later, I've been doing treatment continuously. 5 different lines of treatment to date.

For the past week, I've been doing physical therapy on my back, which only today is showing signs of improving. If I am vertical for too long the pain continues to radiate down my leg. Physical therapy involves stretching and lots of it. The irony/coincidence is that I didn't follow up that May 11 2011 post by suddenly embracing stretching. For the past 8 years, I've had to work harder then ever, and have been more frustrated than ever by the lack of progress, worse yet regression, in trying to maintain my physical condition. But I never added stretching to my routine.

Two months ago I returned to the scene of the crime, Las Vegas.  I've been feeling great on my latest treatment (darzalex for 2 and half years) and I deserved a break and a trip to one of my favorite places and basically a return to somewhere I hadn't been to since being diagnosed. I've been on cruise control for a while, so I need to take advantage of it.

Ironically/coincidentally I've been off of cruise control since this latest Vegas trip. First, Dr Phan scared the bejesus out of me, indicating that things may be changing and that we ought to talk about the next drug. It's not like him to be alarmist, so I considered his words carefully. I have been extra tired lately and a relapse would explain that. My labs last month showed things back to normal, so we've crawled off the ledge of worrying. I did labs today and we'll see what those results show. Likely Darzalex is still working.

Second, a few weeks ago, I developed a huge bump and massive bruise and tenderness on my right elbow. Out of the blue. Phan sent me to an orthopedist who had me do an mri. The mri showed tendinitis but no bone damage and no lesions. The elbow is much better. What happened will remain a mystery.

In a follow up visit to the ortho for my elbow, I asked him about my back (#3). X rays show I have degenerative disc disease in the lower back and it's pressing on a nerve, causing the leg pain. It's probably simply age catching up to me on this one.  So, I'm doing 6 weeks of physical therapy and stretching and icing and heat and we'll reconvene in about a month from now. If the back hasn't improved by then, we'll do an mri on the back. Mind you, I am severely claustrophobic, but I've learned that a couple of Ativan and a sleep mask can get me through the frightening exam.

The problem with the back is that it has grounded me for two weeks now. No exercise, very few excursions, no long walks, no bike riding, no life. This down time really impacts my mental state. The idle time gives me an unwelcome chance to ponder how much cancer has changed my life. 8 fucking years. Relationships, friendships, finances, optimism, goals, body insecurities have all increased or changed or taken a hit or decreased and so on. In many ways cancer has made me a better person, with new goals, new ideals, new friends, a new appreciation of life and people, and so on. In other ways, I long for the old Matt and don't even recognize myself anymore. Old goals, old plans, old quality of life are out the window. Ideally I'd combine the old and the new and I'd have the best version of me. Regrets run rampant.

I worked for the first six years of my myeloma journey and looking back I have no idea how I did it. It's a blur. I was barely hanging on and barely able to put a thought together other than go to work, go to the doctor and go to sleep. Crap, that's what that was.

The first 6 months post diagnosis, I was in and out of the hospital a lot. We had a lot of challenges finding a treatment that would get some control over the disease. Hospital stays were absolutely horrible for my mental state. These latest two weeks of limited activity due to the back are in no way comparable to hospital stays. But it is giving me a chance to think and perhaps think too much.

As I anticipated back on May 11, 2011, it's been quite a ride. We'll see where it goes from here.


Monday, August 5, 2019

Post from I Had Cancer

I Had Cancer is a site for folks to share their story.  The below link is something I find pretty spot on.  Have a read:

Embracing Loneliness as a Gift by Kelly-Nemecek

Saturday, July 27, 2019

5 Days in Myeloma - A Summary

As you recall, last month I had a slight scare when Dr Phan thought perhaps we were seeing changes in my numbers and that we might be nearing the time to change treatment. I followed up the Phan visit with a Berenson visit. Berenson was not bothered in the least but what he saw. Ahhh, the mysteries and confusion of myeloma.

Monday of this week I met with Phan to review July labs. This time I had seen my results beforehand and knew they were back to where they've basically been since starting Darzalex in late 2016. Creatinine back to low 2's. Note that I put myself back onto a modified kidney diet. I had been eating everything lately. Foods high in phosphorus and potassium are kidney no no's. So I've cut back on nuts, beans, stuff like that.  Phan was pleased with the results and wrote off June labs as an anomoly.

Tuesday I did my volunteer duty at the Marine Mammal Rescue Center nearby. It's awesome and it's hard work and it's a break from thinking about about cancer. I feed harbor seals, sea lions and elephant seals. I also clean up poop, clean pens, wash dishes, do laundry. And I love it. Fellow volunteers are much younger than me, but they're a great bunch of animal loving people.

I have been tired as heck lately. I take massive 2 hours naps and when I wake it takes me an hour to even be able to function. Frustrating. So when Phan said it might be time to change, I equated tiredness with myeloma strengthening. But with my myeloma under control, the fatigue might be something else. I went to my primary care doctor and she is going to check my thyroid and vitamin b to see if that has something to do with it. We also discussed that perhaps it is partly in my head, that I might have some minor depression. Well I suggested it. She thought it might explain some of the fatigue, but that something physical is also likely. I outgrew my most recent therapist so she suggested someone new.  Primary care doctor was Wednesday.

Thursday was my quarterly visit with my dermatologist. Full body check (humility gets checked at the door). The good news is everything looks good. No warts, thank god! I am getting some precancerous spots on my head, so she froze a few spots and has me doing a topical cream for the next 8 days, which will make me look like I was beat up. Also Thursday I saw an orthopedist to talk about my elbow and arm. Starting a week ago, I had serious pain in the arm, was bruised and developed a bump just below the elbow. Phan guessed bursitis. But he acknowledged that it was outside his expertise. Leslie sent Phan a picture of the bruise as it worsened (see below) and he said get to a orthopedist. My dermatologist noticed it and thought it was just a benign cyst. The ortho thinks is it something called a redundant bursa and often is caused by trauma. But other than my normal little bumps and dings, I haven't had any trauma on the arm. It likely will go away in a month. But given my health history, we'll do an mri next week to ensure it's not a mass of something. The bruising and tenderness are almost gone. And the bump has shrunk.

And that brings us to Friday (as I write, earlier today). Today was my monthly darzalex infusion. 5 hours and ten minutes. Not so bad. My buddy Mike sits next to me, but there's not a lot chatting. We both basically nap and watch stuff on our laptops.

And that's my week.

Vikings training camp opened this well.  Coincidence that camp opened the same week that doctor's appointments kick my ass? I think not.


Oh I should also add that last week I had an awesome with my brother. We sort of recreated a shot with our uncle, 30 years later.



Tuesday, July 23, 2019

Gritty!!!

Sunday, July 14, 2019

Two Days in Myeloma - A Short Screenplay

                                                                                                                                     FADE IN:

EXT. PARKING KIOSK AT THE ENTRANCE OF A PARKING STRUCTURE
A car pulls up to the kiosk. The window goes down. From the driver’s point of view, an attendant slides open a window on the kiosk and leans out.

ATTENDANT
Good morning. It’ll be five dollars.

DRIVER
Here you go.
Hands over a card.

ATTENDANT
Will you be coming back tomorrow?
DRIVER
Tomorrow no? Friday, yes.
ATTENDANT
Sorry, if you were coming back tomorrow, it’d be 8 dollars for the two days.
DRIVER
Oh well.
ATTENDANT
Receipt?
DRIVER
Sure.

The attendant hands back the card and a receipt.

ATTENDANT
Have a blessed day.

The gate opens and the car pulls into the structure. It’s early enough in the day that his usual parking spot is available. It’s a corner spot on the second level, near the stairs. 

INT. PARKING LOT STAIRWELL
Matt is rushing down the stairs. A couple of years back he couldn’t make it down the stairs at all, too weak and too shaky. He makes a mental note that catching a deep breath on this day is a bit more challenging than usual.

INT. EXAM ROOM
Matt sits and looks at his phone. On the chair next to him is his hat and sweatshirt. He’s already weighed in and had blood pressure taken. There’s a gentle knock on the door. The doctor walks in, holding an open laptop in his hand. He has a serious look on his face.

MATT
Why the glum look doctor?
DR PHAN
Have you seen your lab results yet?
MATT
Um, nope. Usually I do, but not this month.

Dr Phan sits down across from Matt. He places his lap top on a small rolling table. He rolls the table so Matt can see.

DR PHAN
Ok, well look. A couple of things have changed.
MATT
Uh oh. Really?
DR PHAN
Yeah, see you creatinine? It’s gone up. And your m spike has gone up. How are you feeling?
MATT
Well, I’ve been more tired than usual. And the other day on a walk up the hills of Signal Hill, I had difficulty getting deep breaths. Kind of like when I first diagnosed.
DR PHAN
When did you do your IVIG? There’s no literature to support this, but my theory is the  IVIG can impact the efficacy of darzalex.

(IVIG is an infusion of immunoglobulins to help boost a patient’s immune system.) 

MATT
Well, I did only half the IVIG dosage last week, since there is a shortage. Seems like no one wants to donate anymore. But, you know,  I did labs before I did the IVIG.
DR PHAN
Well, we may want to start thinking about changing things up.
MATT
Yeah, I’ve been on darzalex for over two and a half years. Longest I’ve been on any drug.
DR PHAN
That’s a while.
MATT
Definitely I’ve been on cruise control.
DR PHAN
Well let’s do this. Don’t do another IVIG. Do your darzalex this Friday, then we’ll check your labs and see what’s up.
MATT
Fair enough.
DR PHAN
What else is going on?
MATT
I took a ceramics class. Here let me show you.

Matt grabs his phone and searches for photos of his ceramics projects. He hands the phone to Dr Phan.
DR PHAN
Nice. I wish I had time for something creative. What about the guitar?
MATT
It’s on my list.
DR PHAN
All right, well keep me posted. I’ll see you next month.

EXT. MARINE MAMMAL RESCUE - LATER THE SAME DAY

Matt is dressed in large waterproof overalls and knee high boots. He walks out of a pen, carrying an empty container. Inside the pen are sea lions, eating fish. Matt walks in to the break room.

INT. BREAK ROOM
Matt goes to locker and grabs his phone. He walks to a chair and sits and dials.

MATT
Hi, this is Matt, I’m wondering if I can get in to see Dr Berenson this week.
RECEPTIONIST
Sorry he’s busy all week.
MATT
He doesn’t have anything for a quick visit?
RECEPTIONIST
Afraid not. Plus he is leaving early Wednesday and Thursday, so he is jam packed.
MATT
Argh. Ok thanks.

Matt hangs up. He dials another number.

MATT (CONT’D)
Hey.
LESLIE
Hi. What’s up.
MATT
Can you do me a favor?
LESLIE
Sure
MATT
Call Susan at Berenson’s office and see if she can squeeze me in this week. I haven’t see him in a while and I think I should.
LESLIE
Yeah, let me check.
MATT
Plus. If he has anything, also see if we can get in to the kidney doctor the same day.
LESLIE
Will do. I’ll let you know.

EXT. PARKING LOT OUTSIDE MARINE MAMMAL RESCUE - EVENING
Matt is walking to his car. He makes a call as he walks.

MATT
Hello. I’m done.
LESLIE
Cool. Long day.
MATT
Yep, lots of animals here right now.
LESLIE
I talked to Susan and she was able to fit you in at noon tomorrow. And Dr Froch also had an opening tomorrow.
MATT
Perfect, thanks.

INT. EXAM ROOM - THE NEXT DAY
Matt and Leslie sit and wait for Dr Berenson. They can hear him outside the closed door, talking and walking back and forth, giving direction to his nurses and offering positive messages to other patients. Dr Berenson then enters the room, followed by a young scribe with a laptop on rolling table.

BERENSON
Good morning, good morning. How are we doing?
MATT
Pretty good, pretty good.
BERENSON
Hey, I like your shoes.
LESLIE
Ah thanks. Converse.
BERENSON
So what’s going on? Your labs all look good.
MATT
Um, really? Dr Phan thought he saw some changes.
BERENSON
Hmm. I don’t see it. How are you feeling?
MATT
A little more tired lately.
LESLIE
A lot more tired lately. He’s taking daily naps.
MATT
That’s true. And it takes a while to wake up from the naps.
BERENSON
Well, everything looks fine.
MATT
Even my creatinine and m spike?
BERENSON
Yeah, they’re up a bit, but I don’t think it’s anything to worry about.

Dr Berenson turns to the young scribe.

BERENSON (CONT’D)
You should have seen this guy when he first came in. How long ago was it?
MATT
8 years.
BERENSON
He was in horrible shape. We had to really get creative to save his life.
Berenson turns back to Matt and Leslie
BERENSON (CONT’D)
Listen, you’re doing great. Let’s not change a thing.

EXT. TREE LINED STREET - DAY
Matt and Leslie are walking down a steep hill to where the car is parked.

MATT
Well, that’s confusing. Talk about two different messages.
LESLIE
Sure is. I guess you just do your treatment and we’ll see what labs look like next month.
MATT
I guess so. Sheesh, that’s the thing with this fucking disease. It’s such a mind game.

They arrive at Matt’s car. Screen fades to black. A message is displayed: To be continued.
FADE OUT.


Sunday, June 30, 2019

A Horse Race Without A Horse: How Modern Trail Ultramarathoning Was Invented


Back in the day...way back in the day, I did a trail running event called in the Dipsea in Northern California. I even once did the Double Dipsea, a 14 mile trail run. Kicked my butt.  But 100 miles....holy mackeral.




#dipsea #doubledipsea #mttam #wbur

An Update in Images

Approaching 3 years on Darzalex & Pomalyst. Absolutely the best regimen I've been on. Working great. So what's new? Well check ...