Friday, January 17, 2020

Feelings, Wo-o-o Feelings

 If you're living by fear then you're always looking for security. If you're living by faith then you're always looking for freedom. I don't know the original source of these word, but they were carried in the wallet by an amazing man who left this world far too soon.  RIP Bob Klose.

 2020 arrived, right on schedule.  I can sincerely and pointedly say it couldn't have come soon enough.  Frankly, 2019 sucked.  I mean, myeloma-wise, it wasn't bad. I flew right by the three year mark on my regimen of Darzalex and low dose Pomalyst. Darzalex, aka Dara, aka Daratumumab, is by far the best drug I've been on since diagnosis.  2019 started out great, I was feeling good. volunteering at a the Marine Mammal Rescue Center where they rescue sick or injured seal lions and seals. I was also volunteering with the Leukemia and Lymphoma Society. And I was living life, everyone's goal. Starting in about April something changed. l had a worrisome lab results (false alarm), followed by a mystery elbow injury, followed by a massively painful back issue that was totally new to my curriculum vitae. That back issue forced me to take a leave from feeding the marine mammals. That back issue also translated to me getting horribly out of shape given I was living sans exercise.  I also took a break from the LLS. It began to feel much like an office job and that's no longer me. Towards the end of 2019, I had a sort of aha moment, which was great, but also left me depressed and wondering what life is truly about.

Living with cancer, more specifically living 8 years with an incurable cancer, has made me more certain of who I am and gave me a purpose greater than I had known prior to diagnosis. I am certainly more understanding of the struggles everyone faces. Most myeloma patients are uniquely qualified to be a support system for others. As time goes by, most of my friends and acquaintances are myeloma patients. This is tremendously helpful in maintaining health and sanity. We're all in this together. Unfortunately, lately it's more challenging for me to speak with patients who aren't doing well. I'm just not sure what to say. There's an inherent sadness in illness.  And now, with my aha moment I've developed seemingly chronic anxiety, guilt, worry and questioning myself on everything. If you mix my anxiety with my stressing of over every single thing (small and large) and a monthly steroid induced  emotional roller coaster that intensifies each passing month. I worry that I am on the edge of a complete emotional collapse.

2020, though, should be different. I'm being serious about mind and body health, my back is improved (I'll soon return to the marine mammal rescue center (doing much less heavy lifting)). As I said, big picture myeloma-wise I'm in a healthy place.  I've restarted exercising, but I have to be a much smarter and focused worker outer. Balancing my desire to run away with wanting to live a normal life is no easy feat. I'm working to incorporate creativity into my life and that's rather exciting and motivating. I like, scratch that ...love, the organization Growing Bolder and their stories of older folks doing wonderful things.  I am quickly becoming a member of the older folks club.  And, I'm working to make it so when I pass, people won't just say "Matt...he was ok".  There needs to be stories. 

My myeloma labs are still looking very good. Today I am getting my first darzalex infusion of the new year. It's also my first year on medicare and the search for finding a good supplemental plan and prescription Part D plan was, whooo wee, nerve wracking. I think I signed up for a good plan. So far so good. Leslie and I, and Gracie, are hoping to relocate in 2020. Where we end up though, is a question mark. 60 years old is less than two years away. That's huge!

As a note, my Buy the Vikings screenplay is complete and I've started my next script, When the Chips are Down. Now I just need someone in the industry to give BTV a look see.

Let's get to a summary of recent life:


Gritty has surpassed the Phillie Phanatic as my all time favorite mascot. This gritty head gear has to be one of the greatest gifts I have EVER received. 

 Hot town, summer in the city
Back of my neck getting dirty and gritty
Been down, isn't it a pity
Doesn't seem to be a shadow in the city



My lost kindle never showed up, but it seems like Delta tried their darndest. I recently flew up to Oakland and I spotted a lost phone on a chair inside the Southwest terminal at LAX. "What to do, what to do" I thought to myself. The lost device inserted me right back into the exciting lost kindle experience. I reported the lost phone to TSA.


I
I made my own menorah for Hanukkah, using spare parts. Next up, a repurposed reading lamp.


Typically I'm a Baileys consumer in the month of December, but that took a back seat to eggnog in 2019.


I got much enjoyment out of the Christmas gift my neighbors gave their daughter. 

Some other notables:
I shaved my beard off in early December, but it's being brought back for 2020. Beast Mode made an NFL comeback. The Vikings season put me on a roller coaster...they had a big victory in the playoffs, but crapped out in the second round...reminding me why I have a love/hate relationship with Kirk Cousins.  Gracie's hearing is going and she's getting old, making me sad.  But she bounces around and gets under feet like a puppy.

I live to fight another day, another year, another decade. That's a good thing. Take a hike 2019.





Friday, January 10, 2020

New Interview with Dr Berenson

ASH is annual THE hemotology conference. Berenson presented and here's an interview with him done at the conference. Note that he discusses a BCMA test. Whenever I visit Berenson, he takes research blood and measures my BCMA.

Update on Myeloma Genetics and New Treatments



Thursday, January 9, 2020

An Important Video about Medicare Drug Prices

This video is from patient advocate Gary Peterson, one of the first fellow patients I met after being diagnosed with myeloma.


Friday, December 13, 2019

The Kindle Experience aka Sweating in Atlanta

Prologue

About ten days ago, I texted my sister in law asking if she's read The Testaments yet. It's the follow up to Handmaids Tale. We've both been waiting excitedly on our respective library copies to become available.  Last time I had checked three weeks ago, I was 32nd on the waiting list. Somehow, half a day I texted my sister in law, I received notice that a copy had become available. How that happened I don't know, but I rushed to library and picked it up. I was excited not just because I was really looking forward to reading it, but also I knew that I'd be getting a plane to the east coast in a couple of days and it would be the perfect airplane reading material.

Well, a day later Leslie and I came home to this.
Gracie is 12 and is in pretty darn good shape.  She's always been a sneaky paper eater. But as she gets older, she is no longer clandestine with paper and cardboard eating. She's even added wood into her culinary mix. If we're home and we don't know where she is, there is a 50/50 chance that she is destroying something.  When we came home from being out for a few hours recently, she had started eating The Testaments plus some other books. I was pissed. Wtf, Gracie!? I didn't talk to her for almost 24 hours, the longest I have ever gone without talking to her.

With the hardcover book gone I decided that I'd just take my Kindle with me on the trip.  I had recently started It Can't Happen Here by Sinclair Lewis.

I. Orange County to Atlanta to Orlando

On Monday this week, I flew to Orlando on Delta. I had a short layover in Atlanta, where I changed planes. I landed in Atlanta with about 40 spare minutes until my next flight. I had a quick bite to eat at a TGIF in the airport (coincidentally, two days earlier I jokingly suggested to Leslie that we stop at a local TGIF (Thank Goodness It's Friday) for lunch). Neither of us had been to one in ages.

I paid for my food with a credit card. As the server was ringing me up, I was holding my wallet.  I began anxiously searching for the credit card I wanted to use to pay. It took me several seconds to realize I had already given it the server. Chemo brain and loss of cognitive function has me forgetting much lately.  I breathed a sign of relieve when I realized that I hadn't lost my card.

As I walked to my gate, I thought how it's kind of funny that I was forgetting things, thinking that it makes me into a kindly old man in training. While walking I was hit by a figurative loaded large sized suitcase, realizing that my Kindle was still in the seat pocket of my previous plane. I asked the agent at the desk at my gate if I had time to go my previous gate.  I was told no, that we'd be boarding in a matter of minutes.  But the agent called the previous gate and was told that no one had turned it in.

 I was instantly sad and pissed at myself. Being forgetful had instantly become no longer amusing. As I waited for my boarding group to be called, the pilot came on the P.A. system and announced we had about an hour delay, as maintenance needed to fix a small oil leak on our plane.  Yes! I thought I can go check on my Kindle.

I got on the in-airport shuttle and went back to the terminal and gate I had arrived at.  I arrived at the gate to see folks deplaning from a new arrival. My previous plane had already left.  I asked the gate attendant if any one had turned it in.
 "sorry but no"

Damn. I then saw that my next plane was already boarding. I got back on the shuttle and hauled ass back to the other terminal. Apparently instead of making people wait while the problem was resolved, Delta rounded up a replacement plan. I called Leslie and told her what happened and how sad I was.
"Isn't it old?" she asked.
"yep"
"was it expensive?" was her follow up.
"No, I bought it years ago from Amazon for like $29. And I only use it for reading, so there's not a lot of stuff on it"
"well, then don't worry about it" Leslie said.
"I know I should let it go, but I'm really sad about it and mad and I'm going to try not to cry right here in the middle of the airport"

It's been an emotional challenging time of late.  My emotional stability has been tested as I deal with back problems.  I've heartbreakingly lost a handful of people in 2019 (not all to myeloma) and it's taken it's toll. But I've tried to be strong and stoic. I told Leslie that Gracie eating my book followed by losing my Kindle might be the straws that broke the camel's back.  All the heartbreak was being transferred to the Kindle loss.

I boarded the plane, got to Orlando and had slightly recovered from the initial slap of the Kindle experience. I had dinner with some friends and went to sleep. I had a large myeloma meeting the next day. At dinner I relayed the Kindle story to all who asked how my flight was.

II. A Paige Turns

The next day I awoke tired and sad.  I got myself ready for the day. I checked emails before leaving my room and saw an email from a thoughtful Delta employee named Paige.  Here is our communication:

Paige
 
  Matt
 Paige
I told a friend at the meeting, and texted Leslie and my mom the good news.  I would be flying home through Atlanta the next day and figured I'd have plenty of time to get it during my layover.

III. Back to Atlanta

To allow me to move around the Atlanta airport quickly I took advantage of the free bag check at the gate. So when I arrived in Terminal T, I power walked to gate A-21. The agent there had not seen the Kindle and kindly suggested I go to customer service across from A-18. After waiting in line for 15 minutes I told the representative what had happened. She brusquely said they didn't have it and that I needed to go to Lost and Found. I tried to show her my email exchange with Paige and asked if she could check IFS, whatever that is.

"nope Lost and Found. It's by baggage claim"

Incredulously I said: " You mean I have to leave the terminal and then go back through security"

"Yes. Is there anything else I can help you with?"
"Please, can't you just check here for me"
"No"
"Well I have a plane to catch, do I have time to go to lost & found and then come back through security?"
"Probably not. Do you want to change flights"
"Huh? Of course not. I just want you to check here for me. Please"
"Lost and found. Next in line"

I stormed off, saying "this is fucking ridiculous"





I checked the time and saw I had 45 minutes, I was going to give it a shot. I motored and got to lost and found in 10 minutes. But I was told I needed to go to Delta lost and found?

"you're in the north terminal. Delta is in the south terminal.

Whoosh, I ran from there to Delta lost and found, where no one else was in line and three people were working. I asked and they said they could check, but the one person with the key to the door to lost items was in a staff meeting. I pleaded with them and they called someone, who within minutes was there and searching lost and found for me.  My Kindle was not there and in fact, it wasn't even logged in to their lost items notebook. A similar item was there, but mine is purple and that one was black. By then I had 15 minutes until boarding.  I ran to security. Fortunately, I have TSA pre-check and got through quickly.

Customer service was next to my departing gate and only had one person in line. 3 representatives were working. By now, I was sweaty, panting and pissed.  I saw the person who had initially helped me, look up.  She then whispered to the other rep, who then whispered to the 3rd rep.  A rep freed up but didn't say next in line when it was my turn. So I took it upon myself to walk up to the counter.  The rep looked up at me and said she was busy.

"Ok I understand, but I just have a quick request"

I really was hoping that perhaps they could take a quick look for it, just one time. I got no response from the rep, who picked up the phone and dialed and I stood there with a powerful feeling of defeat. I wanted to scream. Right at that moment, on the P.A. system my boarding group was announced. Damn. As I walked to gate, I loudly shouted in the direction of the initial first rep I had talked with. She was ready helping someone.

"thanks for nothing Michelle! It wasn't in lost and found"

She looked up at me and said nothing.  I boarded the plane.  On the flight I had a beer and a 5 mg edible. There's no way in my sweaty and agitated state, that I would last sitting on a plane for 4 hours. I began to worry that I might be one of those people on the plane who flipped out and they'd have to turn the plane around. I repeated silently to myself:

"you will stay calm and watch a movie" "you will stay calm and watch a movie"

The Kindle was gone forever. Ugh,

Epilogue

I called Leslie right before I boarded and told her that I didn't have luck. I had been texting her, my mom and a friend with Kindle saga updates.  She said sorry but that I had to let it go. I sent one last message to Paige:

When I arrived home, Leslie and I sat on our bed to talk about my trip and her couple of days. I adjusted a blanket on the bed and there lay a brand new and improved Kindle that she had rushed out to purchase, so it'd be home before me. I was elated, touched and happy.


The next morning, I had another email from Paige.

Paige

Matt

Paige

Matt
I left home early the next morning to fight LA Traffic for both Berenson and kidney doctor appointments. It's a 30 mile to Berenson and took two hours. Both doctors, by the way, are quite happy with how I am doing, almost 9 years into myeloma including 3 years on Darzalex. In fact, my kidneys are operating at 33 1/3 percent...which is a record for me, since being diagnosed.


 That night after a two hour drive back home and meeting my doctors, I had one last email from Paige.

Paige
 I already knew there was that one in lost and found and that it wasn't mine. So my last and final option is to file a claim with Delta.  Perhaps it will show up some day.  But at the very least I saw the there are nice people out there, Paige especially, and that Delta, aside from the "customer service" reps, was a pretty wonderful airline. Positive experience almost all the way around.


 

Friday, November 22, 2019

The Devil is in the Dex


I've written about dex before. Dexamethasone. It's a corticosteroid and it's the devil. When I was first diagnosed and Dr Phan said that dex would be a normal part of my treatment regimen, my thought bubble was "fuck yeah! I'm gonna get huge and buff as hell". WRONG. Corticosteroids are the opposite of Anabolic Steroids, which build muscle. Corticosteroids actually cause muscle loss. And to add to it, dex or corticosteroids lead to weight gain, osteoporosis, emotional instability and vision problems. And I can vouch for all of these.

BUT, most importantly, dex is a key component of treating myeloma. It reduces inflammation, lessens side effects, helps the cancer drugs be more effective and on it's own can be a sort of treatment. I'm no doctor, but suffice it to say, it's invaluable. It's also used for lots of other ailments. While I was volunteering at the marine mammal rescue, I noticed that ill sea lions were getting a low dose of dex.  I felt bad for them though, I can't imagine how it impacted a sea lion's emotions.

When diagnosed I was about 190 pounds. Within a year or so, I was almost 220 pounds. Now I'm back down to 190, but I have lost a lot of muscle, so I figure I ought to be 175. I'm working on it, but my back issues have severely slowed down my working out. Soon I hope to start a Livestrong program at the local YMCA (although I'm a bit ambivalent about the Y) that will get me working out again. I've never ever needed an organized work out program before, but I've had to swallow my pride and acknowledge I need help. Arghhhh!!!  This alone is frustrating.

Recently I learned I have cataracts. Thanks dex (in other words, kiss my ass dex). No wonder I absolutely hate driving at night. I can barely see where I am going what with all the glare and fuzziness.

A few years back I was doing about 40 mg of dex once or twice a week depending on my infusion schedule. Note that my dex has always been infused, many patients take it orally.  But my mad scientist, artiste Dr Berenson has me on oral Medrol, an additional steroid, so I get dex with my infusion.

After a while 40 mg just became too much for me. I often yelled at people at work. A prime example was me telling two work friends to "get the fuck away from me" when they asked me why the Vikings lost the previous day. I'd frequently have to send apology emails to various coworkers.  On the positive side, I was highly productive at work when flying on dex. I'd get a lot done and was laser focused on the tasks at hand. On the negative side, at home, I've even yelled at Gracie for taking too long on our walks. And neighbors who drive too fast on our street....well, you get the picture.

I'd get terrible insomnia. I'd write long, heart spilling emails at 3 am, some sent and some not sent. In retrospect I maybe shouldn't have hit send, given I prefer to hold my cards close to the vest.  Unfortunately, the Dex exuberance was followed by a crash. Physical and emotional.  Tiredness, depression and hopelessness would take over about two days after my dex infusion.  We eventually got Berenson to lower the dosage to 20 mg. This helped immensely with the insomnia and with the crash.

When I started Darzalex three years ago, we actually lowered the Dex dosage to 12 mg. And with a monthly infusion, this has been great for minimizing insomnia. Of course, edibles also help. And of course, I still take 8 mg of Medrol every other day.  I've now been on Darzalex for over three years, and I just realized that something curious has happened very recently. While the high of Dex is much less, the crash and emotional distress are much more intense.  The rage and anger has become huge. I yelled at a parking attendant for taking too long.

And then sadness, good golly, don't get me started. A couple of months ago I was on a Sunday morning donut run and almost cried in my car, because no one had crullers.  The crescendo was last week, the day after treatment, I was driving and was struck by pure dread for the first time, because I knew the crash was a day away. I called Leslie and told her that I wasn't looking forward to the forthcoming emotional instability. It's become almost unbearable. Recognizing it though, allows me, I suppose, to be ok with lying in bed for a full day to avoid all contact with the outside world.  Even the low dose of 12 mg is terrible. I am fairly certain that I'm prone to depression.  In hindsight I see bouts of depressions even before cancer and the dex has only heightened this.

The good news is, I'm on the perfect drug regimen. Once a month infusion is totally doable. My myeloma numbers are the best they've been since being diagnosed. I feel pretty darn good. The kidneys are humming along.  The dex funk goes away within a couple of days and I feel better.  And now that my back is improving (finally!), I can get back to exercise which is an immense help with the emotional fluctuations. I can do this regimen forever if that is what it takes to keep myeloma at bay. Side effects are actually pretty minimal.

And also, please, please don't worry. Know that I'm not writing this for sympathy or as a woe is me. I'm just sharing how dex kind of sucks.  I'll mention it to my doctors when I see them next month, but I'm not inclined to change anything. It's working great.

Tuesday, November 12, 2019

Berenson Day by Numbers

2.47 latest creatinine
3 years on darzalex/pom
8.5 years since diagnosis
3 hours drive time to Berenson's office
60 total miles round trip distance to Berenson's office
25,000 shares of unknown company loudly sold today by fellow patient on his cell in Berenson's lobby
$81.70 sales price of said shares

1 library book I was reading as said stock sale took place
7 number of times I grumbled under my breath No calls in the lobby, go outside!
81 the number Carl Eller wore as a famed member of Vikings Purple People Eater defense in 60s and 70s
1 Hall of Fame induction for Carl Eller
2016 Year Carl Eller was diagnosed with myeloma
1 Coincidence; to get to Berenson's office from my house, I get onto the 405 north.  I take the 405 to Sunset Blvd, head east several miles and then find a parking spot somewhere near Sunset and Doheny.  I went by myself today and listened to my custom Spotify playlist titled 2019, a non-controversial  playlist title obviously created by a Libra. It's a mix of alternative songs that are calming and have some meaning to me.  Today on the 405 approaching the La Tijera overpass, the song Psalm by Roxy Music came on. As I was about to go under the overpass, a sign on the fence up above read Repent, Believe in Jesus. Right as I drove under the sign, not before and not after, Brian Ferry of Roxy Music sang the lyric Believe in Me.  Followed ten seconds later with the lyric Believe in Jesus.  Ooohhhh, creepy and chilling. What does it mean?

Right before Psalm came on, I was thinking of questions for Berenson. I already knew my lab results and they look good. I decided I wanted to ask him what would happen if I stopped taking all my meds. How long until the myeloma re-emerged?  I'm not planning on stopping my current regimen, although I'd love to cut out the steroids. Bruising, bleeding, and poor vision are steroid side effects that are absolutely pissing the heck out me. But I am a bit curious about how long until myeloma strengthened if I was drug free for a while. I knew his answer would be : 1) we don't know and 2) why would you do that, you tolerate this treatment superbly.  So I didn't ask.



Wednesday, November 6, 2019

WEGO Health

WEGO Health connects patients with healthcare companies with the aim of empowering patients and caregivers by allowing them to share their experiences. WEGO is currently undertaking a short survey of patients and caregivers to understand how online communities get and share health information on multiple myeloma.

It's a short survey and should only take a few minutes.  If you're interested in taking the survey, here is a link:  WEGO Health Survey