Tuesday, February 11, 2020

Honoring Gracie




This is no doubt the most difficult post I've had to write. A few days ago we lost Gracie. Gracie was not just our dog, she was also our baby, our friend, our support, our boss, our road trip partner, our confidante and our pain in the ass.

I met Gracie in 2009. She was a rescue and we think she was about two years old at the time. The first time I saw Gracie, she gave me a huge hug and I immediately feel in love with her. The first time visiting our house, Gracie jumped onto the bed and hovered over Leslie, staring directly into her eyes. It was our first experience with Gracie's complete disregard for people's personal space. There wasn't an open front door on someone's house that she wouldn't think was an open invitation for her to enter. We'd have to warn anyone coming into our home about Gracie's torpedo greeting.

Gracie was fluffy, with a huge tail, giant rear end, and was as ungraceful as can be. Did I mention stubborn as well? I took her to obedience class shortly after the start of our beautiful life together and I think even the instructor was frustrated by Gracie's strong will. I loved and laughed at Gracie's lack of respect for rules. Sure I'd get mad when she changed directions 5 or 6 times on a short walk around the block. Eventually she'd just sit down deciding she'd had enough.



She was so loving though. When I first got sick, I was really sick and Gracie knew it. She slowed down to my pace on walks, when I could barely make it down the street. She'd snuggle with me when I was feeling particularly crappy. She hated coughing though. If you coughed, she'd get up and leave the room. Then we'd have to beg her to come back.

Early on, I took her to the dog beach once and only once. She looked around and took off sprinting up the beach towards the parking lot. I sprinted after her but couldn't keep up. I lost sight of her. I was panicked and went to my car. And there she was sitting next to the car waiting for me.

Gracie's been kayaking, canoeing, swimming in Morro Bay and Lake Tahoe. She's seen the Grand Canyon, Petrified Forest, Moab and last year she finally got to experience snow. She loved it.  She didn't like squirrels and was luke warm on other dogs. She did like popcorn, bones and trying to jump our back wall to see the neighbor's dog.



A couple of months ago, Gracie started to change. She was no longer snuggling with us. She was anxious and pacing around a lot. She developed an insatiable appetite. There were times when I wasn't sure she recognized us. Tests showed that she had a large tumor on her liver, an enlarged spleen, cysts on her kidneys in addition to some neurological issues, perhaps she had something called Cushing's Disease. Things changed really rapidly. The last thing I would ever want is for Gracie to struggle or be in pain.

It's no exaggeration to say that saying goodbye to Gracie has been the most heartbreaking, guilt ridden, and emotionally painful thing I have ever experienced. She's been there for me and for us, through all of life's challenges and victories. As time goes by, I'll remember more of the good times. But for now, I'm struggling with the loss. My morning routine is particularly upended. I don't have her helping me roll the trash cans to the street on Tuesday mornings. We think we can still hear her clomping down the hallway. I still have her toys and bones in the back seat of my car.

Rest in peace Gracie and hope you're loving running free and getting in everyone's business.

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.


 

Honoring Gracie

This is no doubt the most difficult post I've had to write. A few days ago we lost Gracie. Gracie was not just our dog, she was a...