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

Saturday, October 19, 2019

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

Saturday, October 5, 2019

Breaking Bad

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

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

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

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

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

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

Monday, September 30, 2019


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). 

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 Pha...