Friday, March 20, 2020

Notes from Lockdown 2020



Well, well, well. Here we are. I've been living with the uncertainly of having an incurable cancer for almost 9 years. Every month I do my labs, typically on a Monday. Then I wait a few days, with baited breath, for my results. I've gotten used to this. Once a month I do my infusion at Dr Phan's office. For 21 days out of each month, I take an oral chemo at home. I've gotten used to being much more careful in terms of exposure to germs. My immune system isn't horrible, but it's also not that great. Leslie keeps me honest and safe.

But the implications of the coronavirus and the precautions we have to take, translate to anxiety and stress that exceeds my myeloma-induced pacing around. California is now on lock down. Belief it or not, with myeloma I feel like I have some semblance of control. This now feels a bit out of control.  But! After 9 years with myeloma, I think I am ready for this. I've been practicing social isolation and caution for a while now. In the vernacular of my erstwhile favorite writer Malcolm Gladwell, I'm done this 10,000 times so I'm good to go.

We've canceled all non-critical doctor appointments. I'm pretty healthy right now, so missing various appointments is not a big deal. My next labs and treatments are still 3 weeks away. I'm very curious how that is all going to work. I'm being super careful and avoiding contact with others. But I guess I'll have to walk into a lab facility. Or! Perhaps Dr Phan will have labcorp do pickups from his office. We already draw my blood at Phan's using my port.

Today should of been my regular Berenson visit, followed by lunch at my favorite deli. Canceled. Just last month, Leslie and I discovered a classic tiki bar in LA after the Berenson visit. That was a lifetime ago. Weird how fast things change.

And then, in the midst of all this, the Vikings trade away my favorite player and extend the contract of one of my least favorite players. Other moves they've made have once again made me ponder adopting a new team. Given we have no March Madness, I've created my own bracket to find that new team. Leslie shakes her head and says I can't abandon the Vikings now. I'm not so sure.


And to sum up lockdown 2020, I've made a master list of notes, tasks and to do's, in no particular order:

Altra has replaced Saucony as my go to shoe. O M G I got my first pair and my feet have never been happier. I'm walking the daylights out of my neighborhood with these shoes.

In addition to walking, I'm stretching, kettle belling and trxing.

pick weeds daily
write
cook
clean
finish taxes
learn to knit
read
work on repurposing projects
learn features of my camera
learn Spanish
nap
watch tv

And two last points.  1) Please please please be kind to each other. These are stressful times. And now would be the time to reach out to the family member or friend  you've been thinking about. Just a simple little text checking in, goes a long way. 2) I continue, obs, to miss Gracie every minute of every day.



Thursday, March 19, 2020

Myeloma Tips from Healthtree


The coronavirus (COVID-19) is causing concern and disruption for normally healthy global citizens, but there are additional issues for multiple myeloma patients who are frequent visitors to hospitals and are often immunocompromised. Learn on tomorrow's Myeloma Crowd Radio Show from myeloma expert Joshua Richter, MD of Mount Sinai about current recommendations for multiple myeloma patients regarding treatments, doctor visits, blood draws, stem cell transplant and other infusions in light of this unique global situation.
This show is happening tomorrow, Friday, March 20 at 11am Pacific, Noon Mountain, 1pm Central, 2pm Eastern. You can call in by phone to listen Live: (347) 637-1631

LLS Online & Virtual Support during COVID-19 Outbreak

Friday, March 13, 2020

What a long strange trip it's been

sometimes the light's all shining on me
Other times, I can barely see
Lately it occurs to me
What a long, strange trip it's been

-Grateful Dead


Let's get down to brass tacks. I'm at my #darzalex infusion today. 3.5 years on the current regimen and it's working like a charm. My latest labs look good. I was wondering how they'd be, especially my kidneys performance, given I'm eating and drinking just about anything in sight. I do need to go back on modified kidney diet. Overall though I feel pretty pretty good.

Yesterday, I listened to the people around me and decided I wouldn't fly to South Carolina the end of the month for a friend's memorial. Gary was like a brother to me, and he was a Kilimanjaro teammate and example setter. He got a secondary cancer resulting from myeloma-related  radiation a few years ago. Really heart breaking. But I don't think I can risk getting on a plane with my low immune system. White blood cells are good, still below normal range though. My IGG is below 300, low. And I just learned today that a darzalex patient's IGG may be impacted by the drug. So my IGG and immune system might be lower than what the labs show.

In 6 weeks I'll hit 9 years with myeloma. Typically I acknowledge and celebrate every annual anniversary. I think I'll skip the celebration this year.  I'm instead waiting for 2021, when I hit 10 years and turn 60. That is amazing. 2020 so far has a been a year of loss and heartbreak. I don't even want to list them all. We are definitely still mourning the loss of Gracie. Our house and our lives are so different without her.

I am currently reading Wild and it's got me wanting to do some kind of thru hike next year in celebration of my milestones. Superior Hiking Trail in Minnesota perhaps?

Ten fucking years. I never would of thought I'd get this far. I also never would of thought I'd fly through my 50s. I am so ready for them to be over. This journey has been humbling. And tough. I've had ups and downs, and everything in between. Actually some good things have come from this, but overall these years have sent me down a side path that contains fork after fork in the road. So much for my dream from 11 years ago of having a high rise on the Vegas strip and Chrysler 300 with the groovy clock in the dashboard.

So far Medicare hasn't been bad. With my Medigap supplemental plan, I'm not paying a whole lot for treatments, labs and all that. For prescriptions though, I have a Part D plan. Thank goodness. A month of Pomalyst costs $19,000. Even with my Part D, my share is $900.  Thanks goodness for financial assistance programs.  Two wonderful and helpful organizations are the Leukemia & Lymphoma Society and the Healthwell Foundation Nonetheless when the bloody hell are Senate and Congress going to discuss and act on Oral Parity? We're beyond saying it's time. It was time years ago.

After treatment today, I'll go home and pretty much stay away from people. Fun, right? Nope. And that's all I got. Stay safe and well everyone.



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Friday, March 6, 2020

A Discussion of Selinexor with Patient Power and Dr Berenson

Selinexor is one of the latest and greatest myeloma drugs. From what I've heard, it comes with some horrible G.I. issues and for many patients is the last hope drug. At my last visit with Berenson, we asked him about it and he said the first month is terrible but after that it's not so bad and that it is a good drug. Having said this, here is an interview he did with Patient Power on this very topic.

Also of note, I've discussed Selinexor with a couple of myeloma friends and we all said "hell no"  we wouldn't take it. Quality of life sounds horrible. But who knows, perhaps at some point I'd reconsider. Also of note #2, I view dialysis the same way. It's one of those lines in the sand I won't cross. But fingers crossed, I never have to make that decision. Go Darzalex!!!

Monday, February 24, 2020

A Month Without Dex is a Month of Bliss

In May I'll hit the 9 year mark since my myeloma diagnosis. When I think about it, it's pretty darn amazing. In 2011 I certainly didn't expect to make it to 2020. I figured I'd last five years max. And given all the frightening information I read when first diagnosed, five years seemed generous. While I didn't live footloose and fancy free during the first five year period, I definitely didn't bother worrying about certain things.

For the past three years I've been on Darzalex and Pomalyst and by far, it's been the best drug regimen I've been on since being diagnosed. I do my monthly Darzalex infusion and take 1 mg of Pom daily for 21 days with a seven day break. I can honestly say it wasn't until I started this regimen in late 2016, that I started to believe I might live a heck of a long time with myeloma. Certainly I know that any one month things can change and Darzalex stops working. I continue to get a twinge of anxiety when I do my monthly labs.

With my infusion I get 12 mg of Dex. We've lowered my dex over the years, which I tolerate much better. Even with the lowered dosage the emotional crash from my Dex infusion has become increasingly unbearable. I take 8 mg of a second steroid, Medrol, every other day, to help smooth out the ups and downs of Dex. I'm not certain it helps, but I can say Medrol is pretty innocuous in terms of how it makes me feel. But as I written before, I absolutely hate Dex. And over nearly 9 years of Dex, my eyes, bones and skin have taken a real beating.

Leading up to Feb 14infusions I was really dreading the Dex. I talked to Dr Phan and he agreed with my request to skip Dex for a month. And wowzers, it sure made a world of difference. No rage, no increased anxiety and most importantly no scrapping the bottom of my emotional bucket. I checked with Berenson after the fact and he denied my request to permanently banish Dex. It was worth a shot. At least I got one Dex free month.

On the uber positive side of things, my latest lab results were terrific. I feel as good as I've felt since before I was diagnosed. Cruising along.






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. We both still have her toys and bones in our cars.

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

#IAMPATIENT