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


Sunday, July 14, 2019

Two Days in Myeloma - A Short Screenplay

                                                                                                                                     FADE IN:

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.

Good morning. It’ll be five dollars.

Here you go.
Hands over a card.

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

The attendant hands back the card and a receipt.

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. 

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.

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.

Why the glum look doctor?
Have you seen your lab results yet?
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.

Ok, well look. A couple of things have changed.
Uh oh. Really?
Yeah, see you creatinine? It’s gone up. And your m spike has gone up. How are you feeling?
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.
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.) 

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.
Well, we may want to start thinking about changing things up.
Yeah, I’ve been on darzalex for over two and a half years. Longest I’ve been on any drug.
That’s a while.
Definitely I’ve been on cruise control.
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.
Fair enough.
What else is going on?
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.
Nice. I wish I had time for something creative. What about the guitar?
It’s on my list.
All right, well keep me posted. I’ll see you next month.


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.

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

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

Matt hangs up. He dials another number.

Hi. What’s up.
Can you do me a favor?
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.
Yeah, let me check.
Plus. If he has anything, also see if we can get in to the kidney doctor the same day.
Will do. I’ll let you know.

Matt is walking to his car. He makes a call as he walks.

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

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.

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

Dr Berenson turns to the young scribe.

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

Matt and Leslie are walking down a steep hill to where the car is parked.

Well, that’s confusing. Talk about two different messages.
Sure is. I guess you just do your treatment and we’ll see what labs look like next month.
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.

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

Friday, June 28, 2019

Good News on the Myeloma Front for Newly Diagnosed Patients

From Cure Magazine:

The Food and Drug Administration (FDA) has approved the combination of Darzalex (daratumumab) with Revlimid (lenalidomide) and dexamethasone (DRd) for the treatment of patients with newly diagnosed multiple myeloma who are ineligible for autologous stem cell transplantation.

The approval, which was granted through the agency's Real-Time Oncology Review pilot program, is based on findings from the phase 3 MAIA trial, in which Darzalex regimen led to a 44% reduction in the risk of disease progression or death in transplant-ineligible patients with newly diagnosed multiple myeloma who are transplant ineligible versus Revlimid/dexamethasone alone.

In the open-label, multicenter, phase 3 MAIA trial, 737 newly diagnosed patients with multiple myeloma who were ineligible for high-dose chemotherapy and ASCT aged 45 to 90 years old. Patients were randomized to receive either DRd or Rd alone in 28-day cycles. Treatment was administered in both arms until disease progression or unacceptable toxicity. The median age was 73 (with and age range of 45 to 90), and 52% of patients were male and 92% were white. 

At a median follow-up of 28 months, results also demonstrated that the median progression-free survival for DRd has not yet been reached compared with 31.9 months for patients who received Rd alone. Moreover, DRd led to deeper responses versus Rd alone, including higher rates of a complete response or better at 48% versus 25%. The overall response rate was also higher with the triplet regimen, at 93% versus 81%, respectively.

"Multiple myeloma can become more difficult to treat after relapse, so it is important that patients receive an efficacious upfront therapy with a goal of extending their first remission period," Saad Usmani, M.D., FACP, Department of Hematologic Oncology and Blood Disorders, Levine Cancer Institute/Carolinas HealthCare System, and a lead investigator of the MAIA study, stated in a press release. "This regimen offers an important frontline treatment option for this patient population, and it has been submitted to the NCCN Multiple Myeloma Panel for review and consideration for potential inclusion in the NCCN Clinical Practice Guidelines."

Regarding safety, the most common serious treatment-related side effects for DRd (greater than or equal to 10%) included neutropenia (5%), lymphopenia (15%), pneumonia (14%) and anemia (12%). Infusion-related reactions occurred in 41% of patients, 3% of which were serious. The safety profile of Darzalex was consistent with what has been reported in prior studies.

The most common serious hematologic side effects in the DRd arm were neutropenia (50% vs 35% with Rd), lymphopenia (15% vs 11%), anemia (12% vs 20%) and thrombocytopenia (7% vs 9%).

The most frequently occurring nonhematologic side effects in the DRd arm included pneumonia (14% vs 8% with Rd); fatigue (8% vs 4%); diarrhea (7% vs 4%); deep vein thrombosis, pulmonary embolism or both (6% in each arm); asthenia (4% in each arm); back pain (3% in each arm); constipation (2% vs less than 1%); peripheral edema (2% vs less than 1%); and nausea (1% vs less than 1%).

Sunday, May 26, 2019

Bonus Time

I'll admit it, I'm feeling good right now. I've been on darzalex and pomalyst for about 2 and a half years. I just got my latest lab results and my numbers are as good as they've been since I was diagnosed, and probably better than from before I was diagnosed. It's interesting, you look back on a few things and you wonder how long you had myeloma before it was diagnosed.  Like how I tried to donate blood in 2009 and I was denied and told to go eat a steak because I was anemic back then. Anyhow, I'm getting in good shape, volunteering, taking classes and all is well.

And I'll also admit this, feeling this good makes me a bit nervous. 8 years. Honestly, it's exceeded my expectations.  There's nothing really special about the number 8, but since May 2, I really feel like I'm on bonus time. This is all gravy...provided I keep feeling well and keep checking things off my theoretical list. I haven't yet put together my 30 by 60 list, but it's in progress and I'm working on stuff already.  Plus, no one really knows how long darzalex will work. It doesn't work for everyone, it's a newer drug. And it's not like I'm waiting for it to stop being effective, but I ought to prepared for that eventuality

In April 2011 I went to Las Vegas for a friend's birthday. I was there for perhaps 3 hours and I got so bleeping sick. Fever, chills, uncontrollable shiver. I went to bed at 5 in the afternoon scared out of my mind. The next morning, I had a powerful sensation that I was dying. I flew home that day. The next day I went to a doctor to discuss why I'd been feeling weak and tired and fatigued and sweating at night and so on. He had me do a simple blood test as a normal thing before I'd do a colonoscopy the next day.  He called and said I needed to be in the hospital because I was super anemic. Like how was upright type anemic. I was hospitalized that day for a week or so. A day after my hospital release I was diagnosed with myeloma.  The next day I got a port, full body scan, transfusion and started chemo. And the rest is history.

I think in 2013 I went to Vegas with a friend. But I really wasn't feeling good, so I'm not counting it as a visit.  Tomorrow that friend and I are going back to Vegas and I'm viewing it as my first visit since being diagnosed. I'll definitely stop by the Mirage and have a beer at the bar where I couldn't finish a beer 8 years ago because I felt like crap. I'll walk through the casino where I had the "I'm dying" sensation. Wow, writing this sounds a bit morbid and strange...retracing my steps.  But for me, I suppose it's important. I'm closing lots of loops and this is one of those.  I'm super excited.  And of course I'll get my annual bet in for the Vikings to win the super bowl this coming season.  I've made that bet every year since 1995.  I did a calculation not too long ago, that if I'd invested that annual $100 bet on amazon stock instead, I'd have nearly half a million dollars.  It'd be nice, but come on, I'm locked in to making the bet at this point.  The Vikings winning the  super bowl is also on my theoretical list.  They say don't fret about things you don't have control over and the Vikings winning might be of those things. But I say energy has to translate into some semblance of a positive effect.

And that's it. Really not much to report. Cruise control. The first time I met Dr Phan he said that's the goal.  And here we are.

And now for something different