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. 





Tuesday, October 30, 2018

1.97! are you kidding me

1.97 is my latest creatinine number. I just have to say this freaking blows me away. In year 1, it was over 8, Doc Zoller wanted me to start dialysis and basically bullied me into getting a AV fistula in my left wrist. The fricking thing has never been used and doesn't even work any more. Doc Zoller was probably the most gloom and doom of the doctors I've had. My first experience of being my own best advocate was when I said no to dialysis, given I wasn't symptomatic, despite what the numbers said.

Now I see Dr Froch at Cedars and he's awesome. 1.97 is easily the lowest my creatinine has been since I was diagnosed and I'm super happy about it. It's a reflection of the myeloma being under control. And recall at my last visit with Froch he strongly suggested I get back onto a kidney friendly diet and drop some pounds. I've done both and the numbers show the reward.  That is all.

Friday, October 26, 2018

Let's Get Real.....Old



In his book Spying on Whales, author and scientist Nick Pyenson writes that a Bowhead Whale living above the arctic circle and born during the time of Lewis and Clark might very well be alive and swimming today.  That's over 200 years.  When I was born, JFK was president, the first human went into space, the Peace Corp was established and construction of the Berlin Wall began.



Ding ding ding, the correct answer is: What is 1961.  That means as a 57 year old, I'm a grown ass man. Physically there are times I feel it...plus about 20 years. Although overall I feel pretty good and fairly satisfied with my condition, even with the myeloma. Speaking of which, in May 2019, it'll be 8 years since my diagnosis. That basically means I've had an incurable cancer for 14% of my life. Well damn, that sounds crazy. But it also explains why these past 7 plus years have had a profound impact on me.  Competing with me being a grown ass man, I'm also mentally newly attuned to the my place in the world around me. Blah blah blah, you've all heard it before, how the mental challenges of this disease for me are almost greater than the physical challenges. Not that the physical challenges haven't been huge and at times truly sucked.  But staying positive, staying realistic, staying hopeful, and staying engaged is quite the challenge. You've heard me say that not working has forced me to truly address how life has changed since my diagnosis. And I'm even tired of hearing myself ask what I'm doing with my life. I've been asking myself this question for more than 14% of my life.

The Bowhead Whale lives basically doing an annual figure 8, following the winter and summer seasons, following food and ensuring that it's able to surface for air without having too much ice blocking it's way.  With climate change, there is much less summer ice in the arctic circle, meaning commercial fishing boats, cruise ships and large shipping vessels are planning to use the Northwest Passage, thus hugely impacting the whale's home, with unknown consequences on it's survival. It's a change that 200 years ago the whales never could have predicted.

I recently saw a list from a young cancer survivor giving advise to her 18 year old self. It made me think what my list of advise to myself would include. At first I thought it would be a long ass list, but when really thinking about it, I could keep it short provided I didn't get into too much detail. Oh it'd still be impactful, and clear and concise.  Let's think forward instead. Again blah blah blah, I need to make a list of what I want to do moving ahead.  Kind of like my 45 by 45 list from (jfc) over 10 years ago, kind of like a bucket list and kind of like suggested guidelines for living right.  I also think a list is kind of practical in that it will help keep me focused. Because I'll tell you what, 7 years of chemo, drugs, steroids and the like have really messed with my ability to focus on much of anything.



I'm coming off a two week period of zero doctor's appointments. That rarely happens. So Leslie and I and Gracie took a little road to northern California. Some of the reason for the trip was to simply explore and have fun. And part was to investigate areas that we may want to live. It's a bit irritating that wherever we go or don't go, factoring into the equation will be access to doctors and medical facilities, plus factored in is that I'll have a regular need (monthly or every other monthly) to come to LA to see Berenson. While I'd be ok changing some of my doctors, there is absolutely zero chance I'd give up Berenson as my myeloma specialist. Obviously I'm not moving to Finland or Argentina.  Today it was back to the medical stuff, with the next two weeks gearing up to my monthly darzalex infusion. In between, I'm squeezing in a trip to Philadelphia to attend the opening of a retrospective of my mom's art. It's a huge honor for her and makes me real proud of her.  Today I had to stop in to Phan's office, pick up my 24 hour urine container at labcorp and drop by the foot doctor's office. I'll tell you this, membership has it's privileges. Knowing most of the people at these places allows me to skirt around long waits.  It hit me driving home today, that if I moved, I'd have to start all over with building those relationships with any new nurse or doctor or medical facility. Yikes. It's doable though.

A myeloma friend/acquaintance passed away this week. It's quite sad. And it's a reminder of what we're dealing with.

This blog and this cancer have opened me up to a world and people and experiences entirely unexpected. It's a big, powerful, emotional deal. I've been in a bit of a funk for a few months now. I've been entirely content to not talk to anyone expect close family and basically live a sheltered (adjacent to the shut in neighborhood) life.  On our road trip I saw an old friend who lives in nearby Los Osos and yesterday I had lunch with an old work friend. It actually felt good to get out and interact. Cancer is a big part of my life now. I dreaded this being the case early on in my journey. But it's nice to know I can converse about other topics and be engaged in life. It's hard to explain (and I typically don't bother trying to explain) to folks that I'm not interested in or actually haven't been able to socialize.  It's nothing personal, I just haven't wanted to do much of anything of the social nature.  There's been a real decompression going on.  I'm getting through it.  The suggested road map for the future will help with continuing to get through the funk. I'm super excited to see family at the event next week.  I'm super excited to attack the next ten pounds of my get fit program.  Even with a road trip and food and beer I kept the weight under 190. As a reminder the goal is to get  to 175 and perhaps even run again. And I'm super excited to see what's next.

I almost made it through this post without mentioning the Vikings. A few weeks ago I had given up on them. I was looking for an heir to my Vikings memorabilia (still am). But I'm back on the Vikings bandwagon. They've won 3 in a row and I'm pretty excited about the season again. They, like me, began life in 1961.






Monday, October 8, 2018

Crash, UPS, Anticipation, Dammit

Friday was my monthly infusion. With darzalex I get the steroid dex and then Saturday and Sunday I take another steroid, Medrol. We've played with and lowered my steroid dosage over the years because the crash (physical and emotional) sucks. Nonetheless, Mondays after infusion inevitably have me feeling down. This morning I was feeling particularly not thrilled. And it hit me, that I've been out of my antidepressants for almost a week. I think the combo of steroid crash with fluoxetine absence made today pretty sucky.

Mondays are the day I go to the LLS office for volunteer time on their First Connection program. (for those newly diagnosed and looking to speak with a peer with myeloma (or another blood cancer) this is a wonderful program). I almost didn't go the office today. Fortunately traffic was light with the holiday and I was not pushed to the edge by the local freeways.  The executive director at this LLS office is a fellow myeloma survivor who happens to be getting married in a few days. So the office had a congratulations party for her today. I tried my best to avoid these activities when I worked full time and now that I don't work I really try to not do anything that seems too office or work like.

I came home from the LLS and took a nap. And then...UPS rang the doorbell. I had a delivery. Yes! Could it be a birthday gift? Well, that would turn things around. Nearly 8 years into myeloma, I'm damn sure going to acknowledge and celebrate a birthday. 57, inching towards 60. (Any reason to celebrate should be celebrated was what the LLS executive said today during her party (very valid point)).


Opened the box and what is it...not a gift, but it is my fluoxetine and another prescription. I definitely like the mail order prescriptions but sometimes delivery takes a little longer than it should. I probably ought to enroll in auto refills and then I might not have to worry about running out of any of meds. hmmm, I'll add this to my to do list.

Also with the holiday, there is no normal mail delivery today. Tomorrow, tomorrow, is just a day away.




Friday, October 5, 2018

Bear With Me

It's a cornucopia of stuff.

- I'm at Phan's office today. It's my 36th infusion of Darzalex. That's a lot. But it's still working and the goal is to keep it working. Walking Gracie earlier this morning, I wondered why we can't bring our dogs to our treatment. What better way to soothe a patient's nerves than a puppy.

- I was 49 when diagnosed and until that fateful day of May 2 2011 I was looking forward to turning 50. Well that certainly was turned upside down. Well, surprise, surprise I'm now approaching 57 and feeling good. Several years ago I wasn't sure I'd get to this age (and frankly I wasn't sure I wanted to get to this age, I seriously considered (and maybe still do) having a near and long term exit strategy.) Nonetheless, I'm now thinking about how I need to have special plans for turning 60. It's approaching and excitement is building.



- I came back from a Colorado visit the other day. Saw my mom (who recently moved there) and my brother, sister in law, two of their kids and these two bears. I went for a hike with my brother. I asked him if there were bears along the trail we were hiking on. He said probably but he'd never seen any. Lo and behold we saw a mama and her cub, and several piles of bear poop on the trail...twigs, berries, leafs.  The day before I had listened to a Radiolab podcast titled Breaking Bad News Bear, which you can listen to here: 


Enough of this barely relevant drivel.  Today is infusion day. It's my monthly Darzalex. As a reminder, I also take 1 mg of pomalyst for 21 days with 7 days off.  My myeloma numbers look great and I feel pretty darn good. I saw Phan yesterday and he's pleased. The goal, of course, is to keep this going for as long as possible. I see no reason why it won't. Skipped Berenson this month.

- The organization, Cancer and Careers, has an all day free conference in LA on October 13. The focus is on balancing treatment, recovery and employment. I've attended this before and might attend again. I can't recommend it enough.  If you're in Southern California and interested, here's your link: Cancer and Careers West Coast Conference  This brings me to a topic that I've been hesitant to address (given I try to be positive and look forward). But as I get farther removed from work, the more I look at the past 7 years with clear eyes.  I busted my ass to not let my health impact my work. And I think I went above and beyond to ensure that I was not slowed down by the myeloma. Since about 2013 I'd been working full time. Prior to that I was working part time since my diagnosis.  Thanks to the amazing generosity of co workers, who donated their sick time to me, I was able to work part time, tend to my treatments and continue to have a full paycheck and remain insured.  While I wanted to work because the normalcy and interaction with co-workers & friends was a needed relief from cancer, I also had a huge fear of not being able to keep my insurance and not being able to afford my treatment and ....dying.  When I went back to full time in 2013, I really physically wasn't ready to.  But human resources pulled the rug out from under me. I had meetings, was denied meetings, tried to get my boss at the time engaged, tweeted about it, and even attempted to get the union involved. Leslie wrote letters, made calls and I became more fearful I became,. The level of my fear tracked nicely with the efforts to deny me the opportunity to plead my case. The rules were changed on me and it was, frankly, bullshit. I was made to feel like I was a bad seed and bullied into not complaining too much. And I'll say it again, I was a beast at work. I busted my ass and made sure that my productivity wasn't impacted at all by the cancer. I'm proud of this.  I fought for and squeezed in two promotions during this time. And I'm sure I am not alone among cancer patients in feeling like this.  I was concerned about not rocking the boat and putting myself in a precarious position.  So I really had no other option but to go back to full time way before my body was ready.  Now that I don't work, I've realized how fricking crappy I felt for roughly 7 years, physically and emotionally. It's taken me feeling good to realize how bad I felt.  I also understand that for some folks at work, I was a liability and they preferred I be out full time rather than be working part time. It's jacked up. I'm not sure what I can do about it now or if there is a point to thinking about it now...other than I can remind others to look out for themselves. Like I said, my co-workers were amazingly supportive. It was the bureaucratic structure up top that was primarily concerned about covering their ass and lacked real empathy.  Why do I bring this up now? I'm not sure, other than I've exceeded my expectations by reaching 57 and by thriving for nearly 8 years with myeloma, and it's important for me to share my experience. (note that since March of this year, when I dreamt that I might already be dead, that's it's even more important for me to live right, be humane, and come face to face with who I am). If it helps one person, I'm doing something good.  Enough of this.

- I've had 3 epiphanies and deciding moments when I've been in nature. On Kilimanjaro, I made the decision that I would quit work, that my quality of life sucked.  In Lake Tahoe, on a hike I was overtaken with the need to ensure that I lived outside and in nature as much as possible and that living in the big city was not preferred. And while hiking in Colorado last week, it hit me how unimportant all my stuff is (actual stuff. See George Carlin talk about stuff here.)  I've been on a slow process of getting rid of my things, aka Swedish Art of Death Cleaning.  But I'm going to pick up the pace.  It's a wonderful feeling sending things to others and knowing they are surprised. In this day and age of so much communication being electronic, it's a great feeling receiving a real letter or postcard or unexpected package.  If I get a letter or postcard nowadays, I am thrilled.

- Lastly, I'd be remiss if I didn't mention the Vikings. Since it's football season and a Friday I have my purple Friday flannel on. But after nearly 57 years of disappointment, this highly anticipated season has gotten off to a rocky start and may have cured me of my at times over the top fandom. In this regard, if you know a young Vikings fan who may want old Vikings gear and memorabilia, please let me know. I'm looking for a qualified heir.

And that's the cornucopia of stuff.  Some of this might be grizzly. Some might give folks a polar chill. But it is what it is.  Thanks for listening.


What is The Difference Between Terminal and Incurable Cancer?

Today's read: Incurable vs Terminal