Thursday, November 29, 2018

Well Shit

A couple of years ago, I made friends with Rich. We connected because we both had "vs" in our blog name...oh and we both were myeloma patients and had similar outlooks on life.  His blog and tweets were amazing. Powerful, honest, sincere, inspiring, touching and all that. And I'm probably selling his writing and voice short. Rich has been absent from twitter for the past few weeks. We all knew he was having a tough time and had blasted through, unsuccessfully, all available treatments, including a CAR-T trial that didn't work. It's a reminder that there is still no cure and that even something that folks think is the end all to be all, doesn't work on everyone. This week, the community has been  asking each other if we've heard from Rich. Well, today we found out that Rich passed away earlier this week. He had a wife and a young daughter who was his world. It's sad news.

I strongly recommend you going to richvsmm to read some of his posts. Really strong stuff.  This is his last post:

Dancing with the Dead
October 19, 2018

It’s been a weird month. Granted they’re all weird months when you’re terminal, but for whatever reason this one especially so.
Almost every night for a few days now I’ve having really vivid dreams that include people from my past who are dead.  This morning I woke up and it took me a good five minutes to realize who my daughter was or why she was there, as I was laying in bed with a friend who had died years ago from cancer. They’re all like that. Bizarre.
This is now the second week of being on Selinexor. My doctor managed to get me the drug via the compassionate use deal, which is pretty crazy. He said the company was awesome to work with, though, constantly asking what they could do to make it easier, etc., so props to Karyopharm. That’s no bullshit either — I hope this works for obvious reasons but I really appreciate their attempt to keep me around for my daughter for a little longer too. I’m not sure when we do the next MM tests but my fingers are crossed.
Not sure what else to talk about, really. I’ve felt like Hell all week and just been dealing with 1,000 little petty things, stupid things, useless things. Certainly nothing to get into here. I just game, hang with the kiddo and try to stay alive through it all.
Literally.

Monday, November 19, 2018

What is The Difference Between Terminal and Incurable Cancer?

Today's read: Incurable vs Terminal

Innovations in Research: Blood Cancers and Beyond

On November 29 in San Diego, the Leukemia and Lymphoma Society is having a roundtable discussion to address some of the latest trends in treating blood cancer.  The discussion is free but registration is required given seating is limited.  Follow this link to register: Innovations in Research: Blood Cancers and Beyond

Wednesday, November 14, 2018

National Coalition for Cancer Survivorship Study on Quality of Life Measures

The National Coalition for Cancer Survivorship is a patient-centric organization that advocates for quality care for anyone touched by cancer. The goal is to bring about policy change on a national level. They were recently awarded a grant  to study "Return to Functional Status: Patient-Led Cancer Outcome Measurement". What this means is the NCCS will be undertaking a unique study to look at Quality of Life measures after treatment. Nothing like this exists today.  Here is a link to more information about the NCCS Study.

The study will be patient and caregiver driven. The NCCS recognized the need to have representatives from across the cancer spectrum on the study committee, including a patient who has a chronic or incurable cancer, recognizing that there may be unique needs from someone who is in perpetual treatment. 

Well, to my surprise the NCCS asked if I would be on the committee. I was honored to say the least. The study will be a year and half effort and work has already started.  In February the committee will be convening in Washington DC to review efforts to date.

For one of the early efforts, I am asking folks to provide their input.  I have four questions for which we could use patient, survivor, or advocate's perspective.  I'm trying to figure out the easiest way for folks to answer. The series of questions are listed below.  If you like, you can post your responses as a comment to this post.  I might create a Google Doc to make it even easier for people to provide input. If you have any ideas on how to share this, please let me know. And feel free to share with other patients or advocates who may want to provide input.  Many thanks!

Questions:

How do you define “living well” with cancer or after cancer treatment?

What personal/life activities, events or accomplishments do you consider when you think of a cancer survivor living well DURING cancer treatment?

What personal/life activities, events or accomplishments do you consider when you think of a cancer survivor living well AFTER cancer treatment?

What are the most important impacts on your quality of life from your cancer or cancer treatment? Did/does your care team help you address these challenges?

Friday, November 9, 2018

Cruise Control

My post this morning was written as my bag of darzalex was being hooked up. Darzalex is preceded by a massive dose of benadryl and a recently modified dose of dex/steroids. Surprisingly it is when I feel particularly strong and particularly invincible. We have to tell ourselves this.

Dex comes first as a drip from a small bag. Then benadryl, also a drip, in a small bag. The benadryl hits first though. I get loopy, slur a few words and then I'm knocked out for about an hour and half. Benadryl is key. I had a severe allergic reaction with my first infusion of darzalex and ever since we need to be safe that it doesn't happen again. I wake up from my uncomfortable nap during which the dex has taken over. My left leg has always been prone to a little bit of restless leg syndrome. With the dex, during my nap, that leg is moving pretty haphazardly. It takes some work for me to find a comfortable napping position. After another hour, I am fully into the darzalex drip and I'm wide awake.  I use this opportunity to write, text or email people and watch netflix. I have my hat pulled down low over my eyes and of course I am nicely tucked in under my purple Minnesota Vikings blanket. I'm an absolute creature of habit with my treatment and this process never changes. I am typically the first patient in the infusion room and I have my usual chair. Today someone beat me to my chair and I had to switch up where I sit. There's 11 reclining chairs in the area, so I got one close (but not too close, so I wouldn't have to chat too much) to my normal chair.

Now at I'm home, I'm doing a mental debrief of the past few days.  I see clearly that the chair situation was apropos to today and to this week. Dr. Phan always talk about wanting to be on cruise control. Since starting darzalex, I basically am.  I'm in a great place with my myeloma.  And that's why we are looking at my overall health. It's time to look at everything else. Cruise control is nice because I can be in a somewhat state of denial. It's necessary. I know what I have, but I work to be able to do everything that I did before myeloma, with some limits.

Occasionally, I'll have a stretch of days where I am reminded of how fucked up myeloma and cancer can be. This week has been one of those stretches. A few friends are experiencing the non-cruise control part of their myeloma and cancer journey. It's sad and without explanation. With myeloma, an incurable cancer, we can't escape it. We don't go into remission, we don't ring a bell. I can also say that we've come a long way with treatment, and people's survival expectancy and quality of life are improving. Darzalex, for instance, didn't even exist as a treatment option when I was diagnosed.

As I've said before, cancer is basically my identity now. And while I'm working to find my passion and have various other identities, cancer is number 1. And that's ok.  It's nice, though, when I have days where myeloma is tucked away in the back of my brain. It's nice when I have days that I don't wonder when the other shoe will drop or when cruise control will end.  Nonetheless the reminders to remain vigilant and smart and healthy are clear.

This is Your Life and an Honor for my Mom

On May 1 2011, a Sunday, I was released from Long Beach Memorial Hospital. I was diagnosed in Dr Phan's office the next day, a Monday, had my first chemo on Tuesday and then the next day I had my port installed plus full body x-rays. Whoooshhhhh. A real whirlwind five days.  When I started with Dr Phan, he had a small office with 3 infusion chairs and 2 nurses. Dr Phan happened to be the oncologist on duty when I had my first (ever in life) hospital stay. I've been with him ever since. I really lucked out with that.

I can recall the first day of chemo like it was this morning. There was one other patient already there, who I'll call David for this post. He had a non blood related cancer.  He was chatting with one nurse about movies and laughing. Laughing in chemo territory? Not at all what I imagined. One of the nurses asked David if I could see his port and he could explain it to me.  I was scared shitless about everything. Having someone there who was going through it, was absolutely vital to me.  I stayed in contact with David, visited him when he was later hospitalized and attended a birthday party at his grandma's house.  Soon after that David passed away. 

Today I'm at my Darzalex infusion. A couple of months back I started to calculate how many total infusions I've had.  I started...and stopped. It kind of became a trivial task. No point in it, other than my curiosity.  Maybe I'll get back to it.  Dr Phan now has a partner, several nurses, 11 infusion chairs and is in a newer more spacious office.  Thankfully he has remained grounded and helpful and open as ever. 



We saw Berenson on Monday this week and Phan yesterday, as is required before I start a new cycle. Both are thrilled with my latest labs. I've been on the darzalex, pomalyst and dex regimen for nearly two years and it continues to work. We also had a nice victory at Berenson thanks to Leslie. I've been becoming increasingly frustrated with the side effects of the two steroids I take, dex and medrol.  I bruise and bleed so frigging easily. My arms look like I'm a junky.  I'm stocking up on long sleeve t shirts to cover them up.  And I'm losing muscle mass. It's turning to flab. These two things are absolutely shit stirrers for my emotional state and self confidence. The steroids are no doubt the culprit. Leslie got Berenson to lower the dosage of both my steroids.  Yes!  This ought to really help. In addition to my losing weight program. 12 pounds down and 8 to go. I'm also increasing my weight training to build back strength and muscle mass. I'm going to be a beast soon.  On our road trip, while lifting canoes and kayaks I really felt the strength loss. Also on the trip I had a couple of incidents where I got really light headed and had to sit down so I didn't tip over. I don't have high blood pressure but I do take blood pressure medicine which helps my kidney function.  Now that my kidneys are so improved, perhaps we can lower the dose or eliminate that drug. As Leslie says, doctors can be quick to prescribe medicines, but they're not inclined to take drugs away. I'll make an appointment in next couple of weeks with my nephrologist to chat about this. Fingers crossed.

I'm also going to schedule a normal checkup with my primary doctor. I haven't had one since my diagnosis. And I'm going to schedule a cardiologist visit to check out the old ticker. I'm not having issues. I repeat I'm not having issues, but some of the drugs I'm on can lead to cardiac incidents. So let's make sure mine is strong. 

I'm involved in a quality of life research project with the National Coaltion for Cancer Survivorship and in a couple of days I'll post some quality of life questions that I hope folks will feel comfortable answering. 

Today during my treatment I'm watching season one of the Good Place and listening to old U2 live music. It's common knowledge that I'm a Vikings fan, but I'm also a huge U2 fan. Probably my number one favorite band ever. With Joshua Tree being the greatest album ever.  In 2nd place is the Rolling Stones. In the top 5 is the Dave Matthews Band. 



The family just spent a few days in Philadelphia to watch our Mom be honored for her 40 years as a pioneering and inspiring artist and woodturner.  I heard her speak about her work and her inspirations in a way that I hadn't heard before. I was nearly brought to joyous tears by her words. The show was awesome. This was my third trip ever to Philadelphia. The first two times, I was kind of meh, no big deal. But after this trip I really love the city. History, character, and totally walkable.

Be well everyone. We've come a long way with with myeloma treatment and survivorship but it's still a no joke, serious and incurable disease. 





Myeloma News from Cure Magazine

Helpful info from Cure.