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.


 

Life, Death, Psychedelic Mushrooms and Cancer

From Cure Magazine

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.

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.

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

December 14 Cure Magazine Myeloma Event

Dec14 in Charlotte, NC

Sharing a Post from a Blog Called The (Other) C Word

This is a really good blog from a cancer survivor. This post is Removing the Curtain

Sad Times in the Myeloma Community

Rest in Power/Peace Cherie Rineker, Bob Tufts and Bob Regello


From Myeloma Crowd: On Loss and Love In Multiple Myeloma: A Tribute to Three Myeloma Advocates

From Patient Power: Living and Dying with Dignity, An Interview with Cherie Rineker

How to Decide Whether to Work After Diagnosis

From Cancer and Careers

And the Beat Goes On, Infusion Day

As a kid, I would get a mail order catalog of gag and joke items. Whoopee cushions. Fake blood. Trick cards. My most coveted item, that I eventually ordered, was a fake cast. I never broke a bone as a kid. I was a big boned kid indeed. Stitches, yes. Nail into the foot and infecting a bone, yes. Running face first into my neighbor and getting a black eye, yes. For the infected foot I wore a cast to immobilize the foot. But no broken bones and while I didn't necessarily want to break anything, I did think the cast might get me extra attention. People signing my cast, bringing me candy and so on.

The other day, I had a follow up appointment with the back doctor. I've lost count but I think it's been about three months since problems started. I've been doing physical therapy and I have a 40 minute morning stretch and exercise routine at home.  It's improving.  I'm finally taking longish walks again. But no gym, no weights, no sea lions. The other day I thought to myself: "self you're almost back to good again." But then I woke up the next day and it hurt like heck again. It was a different pain though.  No pain shooting down my left leg. That was a good change. But suddenly I would get a stabbing pain in the lower back when walking, causing my knees to buckle just a tiny bit.

I told the doctor and he wants me to get an epidural shoot. Basically numb it up. It's a temporary fix and actually not a fix at all but it might give me relief.  However, it sounded like the doc was thinking surgery is in my future. The rationale being that my L5 disc is trash and this lower back issue is probably going to be chronic and come and go moving forward. Well that sucks. The good news is that it's not myeloma related. Basically it's wear and tear. He mentioned two options: Laminectomy or fusion. Well this certainly did shake me up. He said there's about a 50% success rate with fusion and this is actually a way better percentage than for option one. Dr Phan, who I saw yesterday and I literally trust with my life, said don't do it. That it rarely works. He says stretch and do yoga. And enjoy life.

The past couple of days, though, the back has felt good, I'm wondering if I'll even do a shot. Maybe I've crossed the threshold of recovery progress. Yesterday was my monthly Darzalex infusion and with it I get a drip of 12 mg of dex, a steroid that minimizes inflammation. So right now, the back feels particularly good. It also explains why I only slept two hours last night. I came home from the doctor's yesterday and really wanted to be left alone. Recall that dex can really make a person irritable. I yelled at two cars driving home, then at home I snapped at Leslie, Gracie and generally was pissed off all afternoon. And in two days, I'll be an emotional mess.  It's like clockwork and I'm pretty damn tired of it.  Over this weekend, I'll take another 16 mg of medrol, an oral steroid.

The uncertainty about the back is a kind of microcosm of myeloma. Such an unknown and mystery, and frustrating. I like definitive answers.  How long will my treatment continue to work? Do I have two more years to live or twenty more years. When do I become truly physically impacted by the wear and tear and toxicity of my regimen?  I'm a Libra and have been a challenged decision maker my whole life. Malcolm Gladwell had a great Podcast episode about how we can't really know if we're making a good decision because we have no way of knowing how the unchosen option would have turned out. He says don't bother worrying about it after we've make a decision. I've been a huge Malcolm Gladwell fan for nearly twenty years now. Tipping Point and Blink were hugely influential books for me. But recently he wrote an article rationalizing the non-action of the late Joe Paterno, coach of Penn State football, when he learned that an assistant coach was abusing young boys in the team facilities. People have been blasting Gladwell.

A few years back I started getting rid of stuff. I didn't expect to make it to 8 years. And now 8 and a half years into myeloma, I'm fairly confident that I'll be kicking myeloma's ass for many more years. So now I wish I hadn't got rid of some things. Occasionally I'll look for something and then remember that I sold it on ebay or gave it to someone carefully chosen by me. A Minnesota North Stars patch that I wanted to put on a hat. A Minnesota Vikings memento. Tiki drinking glasses. A book of the works of Shag, a very cool artist. So do I recreate or repurchase these things? Or do I continue to make myself into a minimalist.

And how about going forward?  Do I buy a sprinter van and travel the country? Or do I accept that I'm getting older and recognize that I ought to be more of a realist and less of a dreamer.  Before diagnosis, I had the totally incorrect impression of cancer. I thought you were either cured or died, either within a couple of years. I didn't realize that it can go on and on. I am participating in a study with some non-myeloma cancer patients, some who are in remission or cured.  Yet they have some of the same emotional challenges as me. And some have physical challenges many years post treatment.  Nonetheless it feels like there are unique mental mazes with myeloma and never ending treatment. At infusion today, I was the first one there and got my lucky chair. My buddy Mike showed up second and sat next to me. He was diagnosed around the same time as me and has been on Darzalex a month longer than I have. We chat with a newish patient today who was recently diagnosed with myeloma.  She was so happy to meet us and see that we were both thriving after so many years. Mike is 15 or 20 years older than me.  I go home from treatment and take an powerful nap. He goes to the gym. He's a beast and an inspiration.  

The majority of time, I'm good at appreciating life and loving the little things. Generally I'm in good shape. Generally I'm positive, with some anger sprinkled in. Part of me wants to pack up the van, travel the country, see everyone I know until I get sick and then find a hidden spot somewhere near the Mississippi River in Minnesota and pull a Marley. But that's not really how this disease works. Another part of me, wants a house with a man cave and a swimming pool to entertain friends and family. But is that really me?  Maybe it needs to be me. Or maybe it doesn't. Gracie is getting older. She's healthy but her hearing is going, her back legs are achy and she's tired a lot. Leslie and I don't have kids. Gracie is pretty much my baby. I want Gracie riding in the van with me. Lately I cherish alone time. But Gracie is given free reign to invade my space any time.

Recently, I visited with a great friend who I don't see that often.  From that get together, I was motivated to start running again. But I haven't even had a chance for a short jog.  Days after seeing my friend, my back was keeping me horizontal. Running now seems unlikely. This is frustrating and adds to the mental tiredness. I can walk yes.  But when can I go the gym again? I'm starting a Livestrong program at a nearby YMCA which helps cancer patient regain fitness. I never thought I'd need something like this. I was always a self starter and self motivator when it came to fitness.  Unfortunately, the combo of minimal exercise and steroids are turning me into goo.  As a big boned child, I'm pretty sensitive and impacted by body image issues. Age, cancer, the occasional beer and back problems have exasperated my angst.  Should I accept the goo as well? What is ok to accept and what isn't?  Perhaps I am just growing up and faced with typical adult decisions.

Two weeks ago I was in Dallas meeting with other blood cancer patients.  It fired me up to be a good advocate, good person, engaged person and continue to explore new experiences and learn new things. I've been having self talks to give myself a boost and pat on the back. "you're ok" "you're great" "you can do it" "you're not so bad"

And now, I've forgotten why I was motivated to write this post. I had a real strong positive point to make. Something about that I'm doing well and the best is ahead for me.  I am working on a winning plan of attack. I am writing screenplay number two. I completed number one a few months back. It's an idea that had been floating in my head for decades...yes decades. Only one person has read it to date. But I need to start sharing it, cleaning it up and I need a connection. Unbiasedly I think it'd be a great movie. I've got some multi-media sculptures in mind that I'd like to start doing. I'm taking an on line history course via Coursera. I don't need credits or grades so it's gratis, free. I'm focused on mind and body. Left side and right side of the brain. I am building my core to hold my back in place. I'm going to get back on my bike. Embrace my family and other loved ones. Cheer the Vikings to a Super Bowl win. Note that Kirk Cousins might not be the quarterback to lead this team. But then again, maybe he is. Two weeks ago, I hated him with every fiber of my body. But he has partly redeemed himself of late. Let's see if he keeps it going. And the same goes with me, let's see if I keep it going.

I still really don't like this uncertainty. But I'm working on having on a what the heck and it doesn't matter attitude. Fingers crossed.

I turned 58 recently, so I'll close with pictures of two 58s.

 Wally Hilgenberg. 1974

Me.Today. Purple Friday

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!

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). 

October 17 Webinar on Selinexor

MMRF has a October 17 webinar on Selinexor, one of the latest myeloma drugs. I've heard good and bad about it, but here's a chance for all of us to learn. 

International Myeloma Foundation Webinar October 10

Click here to register.

http://give.myeloma.org/site/Calendar?id=101102&view=Detail&_ga=2.88463451.113088830.1569408202-406724521.1562025442

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...

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.

Cancer Can Feel Like a Ticking Time Bomb

And now for something different

THE SWIMMER A SHORT FILM ABOUT THE POWER OF RITUAL from Blaise Hayward on Vimeo.

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.

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

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.

Gritty!!!

This year’s #BestofPhilly is out, and we couldn’t agree more with @phillymag’s cover choice.
📷: @steveboylephoto pic.twitter.com/izxhMHaVyk

— Flyers Publicist (@FlyersPublicist) July 24, 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.

July 10 MMRF Webinar on Monoclonal Antibodies and Vaccines: Emerging Myeloma Treatments

Follow this link to register for an important webinar on emerging myeloma treatments. 

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

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%).

Excellent TED talk from Cancer Survivor Suleika Jaouad

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 hogwash....my 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.

LLS Webinar Multiple Myeloma Know Your Treatment Options

June 19, click here to register

Two Webinars on May 15

The MMRF has:  Minimum Residual Disease and the Promise of Blood Biopsy on May 15

And the LLS has: The Power & Support of an Online Community During the Bone Marrow Transplant Journey 

8 Years and a Day

Let's look back on the past 8 years.


This is two months before I was diagnosed. I was so weak and tired on this ride, that I had to be pushed on my bike.


This amazing group of friends got together for a haircutting show of solidarity.


The cutting begins.


The hair cutting result. It's hard to see but I had a mini mohawk going.


Even Gracie got into the spirit and asked for a mohawk,


I was admonished by a UPS man for abusing Gracie by giving her this cut.


My first port, just under the skin. It makes infusions so much easier.



For my first birthday post diagnosis these three took me out for a lot of eating. Oh and it was also my 50th.


For the first 12 months or so after diagnosis, I slept a lot. A LOT.

 
Being a caregiver is one of the very hardest jobs and Leslie totally nailed it. She's been with m every step of the way and even gave me shots to boost my immune system.


We even got married in 2012 in the midst of the scary times. Love is very powerful.


I can't even imagine how frightening it most be for a parent when their child is diagnosed with a serious illness. My mom is amazing and continues to inspire me.


Team Goldman's first event. The Big Climb in Seattle. It's a fund raiser for the Leukemia & Lymphoma Society. It's a wonderful organization with many patient support programs.


#TeamGoldman


#Team Goldman


Team Goldman's second event. The Boulder Boulder 10k in Colorado.


For the Boulder Boulder, we raised money for the Institute for Myeloma and Bone Cancer Research, who along with Dr Berenson have been instrumental in my success.


I always represent the Vikings at treatment.


I typically get a huge dose of bendryl with my treatments and it leads to some crazy dreams.


I had to stop commuting by bike after my diagnosis. Eventually I was able to ride to work again and Momentum Magazine allowed me to share my story.



Health care is obviously a huge concern for all cancer patients.


At the Relay for Life, an American Cancer Society event.


Victory!!


I have been super fortunate to climb mountains with an amazing group of people, including these fellow survivors.


A couple of years ago, I climbed Mt Kilimanjaro with these fellow survivors and other folks who lives have been impacted by myeloma or are helping to find a cure. We raised money for the Multiple Myeloma Research Foundation.


Packing my pills for a two week trip to Africa took a bit of planning and effort.


And 8 years later, I'm going to continue to fight and make the best of it. As best I can I am going to live life and enjoy life. And of course throw some humor into the mix.