Saturday, October 5, 2019

Breaking Bad

Super excited for October 11. The Breaking Bad movie is out. Breaking Bad is the best show.....ever. Leslie and I did a Breaking Bad tour a few years back, visiting all the main sites in Albuquerque.  Also of note with  Breaking Bad, it's the first show that I binged immediately after being diagnosed. This might sound weird but I was initially drawn in by the concept of a cancer patient doing whatever they have to do to make things work. There's so much to this, that I can't even fully describe.

I'm rewatching it this week in preparation for the movie.  In episode 2, there is a mention of Thalidomide.  This meant nothing to me when I first watched it. Who knew that just a few months after my initial viewing that we'd be trying Thalidomide, hoping that it was a drug that would work on my myeloma.  It didn't.  And it was a bit of a scary medicine. In the 60s it was used to ease some of the difficulties of pregnancy. However, it lead to birth defects and was banned.  However and who knows how, someone discovered that it worked in controlling multiple myeloma in some people.  So we tried it. It comes in a capsule and directions say to only handle with gloves on. So even though I was ingesting it, I couldn't touch it. Curious, eh. It's mentioned in Breaking Bad as an example of a chemical product that can have duel uses and outcomes.

Also back in the viewing rotation is the new season of the Good Place.  On one hand it's hilarious and on the other hand, it's about folks figuring out what kind of life they led.  Funny and meaningful. I love it.

Meanwhile my back continues to improve. Physical therapy has been a huge help. After four weeks of PT, I was told the other day that I was calling my therapist the wrong name. He reminds me of a friend and I was worried that I'd call my therapist my friend's name, so when I started PT I made sure to remember his actual name and call him that name as much as possible.  The problem is I thought his actual name was Andy. It wasn't until the other day that I learned it's Tony. Oh snap, that left me two choices. 1...never go back to PT to avoid the embarrassment or 2....apologize to Tony. I choose number 2. So when I saw him yesterday I apologized and told how embarrassed I was. His response..."oh, I never really noticed. Well, once I thought you called me Andy but otherwise hadn't noticed." Um...ok. Well I dealt with it and I can keep going to PT. I actually only have two weeks left, then I reconnect with the back doctor.  In the past week, I've made huge progress.  Phew!!!!!!!!!!!!

And lastly, I have to say that this season's version of the Vikings has the potential to be my least favorite version ever.  They are absolutely horrible with an absolutely horrible quarterback.  So sad.

Oh and truly lastly, I am excited to announce that I have learned to poorly play the right hand part of Old Susanna on the keyboard. Success!

Monday, September 30, 2019

Whoosh!!!!!




Tomorrow is October 1. It's my birthday month. 58. JFC, that feels old.  Yesterday I was watching the Vikings sloppily lose to the Bears with a couple of friends. They are in their 40s and asked me how it was when I turned 50.  Well, funny they should ask. I was super excited for my 50th. I was planning a big blow out event. I felt healthy, fit, and life was not bad. Then...five short months before my 50th, I was diagnosed with myeloma, after feeling like crap for the previous three months. How quickly things change.  With that diagnosis, I suddenly wasn't so sure I'd make it to 50. It was touch and go, for sure. Now, in less than two weeks, I'll be 58 and I'm still here, still kicking ass and wondering what my blow out celebration will be for my 60th.

2019 has been a bit of a challenge. I've had 3 MRIs, numerous x-rays and recently my first ever PET/CT scan since January.  Fortunately, my back, neck, elbow and foot issues aren't directly related to myeloma. The disease is still stable and under control.  But the 8 plus years of treatment, oodles of steroids and my approaching 60 mean my body is challenged and I have to work harder and smarter than ever before to stay fit.  My back has been the most challenging and has been an issue for two months now. It has truly messed with my mind.  With rest and physical therapy and time, It's finally improving and I can start working on my fitness again. But wow, I'm basically starting from scratch and that's humbling and frustrating. I've also had to readjustment my expectations.  Sadly I had to give up my volunteer efforts feeding seals and sea lions. It was physical work and it's quite possible that is what pushed my back over the edge.  But I loved it and it was such a welcome change to do something "normal" and not cancer related. I also don't think I'll be running any ultra marathons in the future.  Of course, I didn't do this before.

A few years back I started to get rid of stuff. I was giving things away or selling them or simply tossing them.  Truthfully I couldn't imagine lasting this long with myeloma. But here I am and every so often I kick myself, asking what the heck did I do that for. I recently was talking to someone who has had myeloma for over 20 years and he started talking about how he had got rid of a coin collection many years ago, given he wasn't expecting to be around very long. Mind you, 20 years ago, there weren't a lot of options for treating the disease. I told him that while I felt bad about his collection, it did make me feel a bit better that I wasn't alone in regretting shedding certain things.  Recall a while back I mentioned the Swedish Art of Death Cleaning.  It makes great sense, but perhaps we need to put a bit more thought into the effort. Or we make sure we don't just unload all willy nilly. 

Yesterday I was struck how amazing it is that I am still around.  This year with all the tests, aches, pains and anxiety has left me a bit down. Like damn, so this is my life now. Well, I had a talk with myself. Yes life is different, but let's not forget I'm almost 58 and let's not forget that overall I'm still doing well and enjoying life. My back had me wallowing a bit but I'm snapping out of it and now I'm working on thriving.

And birthday plans? On the actual day I'll be in Dallas for a blood cancer committee meeting. When I return, I'd like to go to a local animal rescue place and I want to see the Joker movie and I'd kind of sort of like to go to Disneyland and maybe go miniature golfing.  Plus, I got to get back on my bike, eat some cake, and spend time with Leslie and Gracie.  The future is limitless (with some limits). 

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.



Breaking Bad

Super excited for October 11. The Breaking Bad movie is out. Breaking Bad is the best show.....ever. Leslie and I did a Breaking Bad tour a ...