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!


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 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.

Monday, September 24, 2018

Webinar on State-Based Cancer Advocacy

The National Coalition for Cancer Survivorship has a webinar tomorrow (Tuesday Sept. 25) on how to get more involved in cancer policy in your state.  As cancer patients know,  a cancer diagnosis can change your priorities and what's important in your life. One thing that changes is your view of and concern for the health care system and patient rights.  In this regard, the NCCS's  webinar  should be good listening. Here's the link:

State-Based Cancer Advocacy

Friday, September 7, 2018

Let's Talk About My Kidneys

When I was diagnosed, I had been in the hospital for about a week; kick starting my absolute hate of being hospitalized. But who likes it? While there, I had a kidney doctor come in and ask me if I realized my kidneys were failing. How the fuck would I have known? His bedside manner sucked.  I saw him for a month or two after diagnosis, but ending up switching to a new kidney doctor. He was unavailable, bereft of information and generally phoning it in, at a time when any new patient was scared and needed support.

Kidney doctor two was ok, technically speaking.  But she talked about me dying a lot and was really gloom and doom. In that first year when we were trying to get control of the myeloma, my creatinine soared to over 8. Per the tables, the 8 meant that my kidneys had failed and I needed to be doing dialysis.  She pretty much strong armed me and Leslie into getting a fistula in my left wrist. She scheduled me for dialysis at 5:00 AM without even consulting with me.  I wasn't symptomatic for failed kidneys. I was peeing, no swelling, no lower back pain. So instead, we educated ourselves about being on a strict renal diet (that would also give me needed energy to help fight the cancer and counteract the chemo) and we did an occasional saline infusion/flush that would take several hours.  On a happenstance walk through a dialysis center I decided that right then and there...and to this day....that is a line I won't cross. Fuck that shit I said then and I say now.

Anyhow, her doom and gloom act got real old and we again switched to a new kidney doctor, aka nephrologist, at Cedars Sinai.  By then we had some traction with beating back the myeloma, so my creatinine started to drop, meaning kidney function improved.  I stayed on the renal diet, minimizing foods with high phosphorus and/or potassium) and the kidneys continue to hang tough.  Eventually though,  I decided to switch kidney docs one more time, for a few reasons.

My doctor for the past three years has been Froch, also at Cedars, and he is the best.  When I became refractory to velcade and revlimid in November 2016, I switched to my current regimen of darzlex and pomalyst.  Lo and behold, with that switch, my kidneys made another dramatic improvement in function.  Enough so that my creatinine dropped to mid 2s, I'm out of failure range and I've basically scrapped the renal diet. A massive plate of nachos followed by pizza the next day were my first dietary splurges.  Sadly, the result of this dietary switch is I am now a fat fuck. I have to lose 20 pounds. I had my quarterly visit with Froch earlier this week and he noted my belly. Leslie made sure he was aware of how far I had strayed off the renal diet. His suggestion was that I go make onto a modified renal diet, even though they operate at abotu 37%,  and I make sure I am babying those kidneys and cutting calories. Makes perfect sense. If at some point the myeloma re-energizes I need those babies filtering shit out like the champs they are. No more potatoes, no more ice cream, no cheese, no cholocate, no stuff that is so delicious. That sucks but it's also fine but oh boy, just 4 days on this low carb (for my weight) and renal diet has me super grouchy.  Add into the mix the dex I am getting today with my monthly darzelex infusion and I'm going to be a real bitch the next couple of days.

Also note, that because of the never used fistula, I shouldn't do blood draws (or blood pressure) from my left arm and the veins in my right arm are tapped out.  When it is labwork time, I have to go to Phan's office and blood is drawn from my port.  Froch likes to check my parathryroid and I forgot to have this test done with my regular labs.  The damned fistula doesn't even work anymore, so I allowed him (and only him) to use my left arm for a small blood draw.

I bruise like a mother fucker. and I knew a left arm draw would leave a bruise. It's a bit bigger than I expected and I am wearing long sleeves for a couple of days.

Lastly, Froch's office has great views, so that in combination him being my favorite nephrologist,  I don't even mind (too much) waiting around in his office.

Wednesday, September 5, 2018

Coincidence? Maybe. Maybe not

Community service award named for Alan Page

Also, while driving to Berenson and the kidney doctor yesterday I was listening to daily mix 2 on Spotify. At one point a John Lennon song was immediately followed by a Jackson Browne. Note that they both share a birthday with me...October 9.  Then at the kidney doctor, I did a blood draw from my left arm and the name of the guy drawing my blood? Jackson.

Tuesday, September 4, 2018

Infusion Week

On the heals of my Alan Page-worthy cancerversary it's back to the drip drip drip this week.  My monthly infusion is Friday, which means a Phan and Berenson visit this week.  Also throw in a quarterly kidney doc visit (Dr Larry Froch at Cedars for those curious sorts).  Friday is also the first Purple Friday of the year, highlighting the fact there is Vikings football this weekend. It's week 1 of the new season. My annual bet on the team to win the Super Bowl has been placed. I've been making the same bet since 1995 and it hasn't hit yet. Last year they were 20-1 and came oh so close. This year it is 8-1, meaning they're one of the favorites.  Buy me a couple of beers and I'll walk you through how my life has paralleled the Vikings history.

With Labor Day being yesterday, I went in to the LLS office today, a Tuesday, for a couple of hours of First Connection volunteer work.  I had epiphany number something this morning listening to the Ologies Podcast on Oceanology. I strongly suggest listening to it.  I'll get into epiphanies at some other time, but I will highlight two significant aha moments: On Kilimanjaro I made the decision that I wanted to end working, leading to my retirement. And in Tahoe while hiking I made the decision that I didn't want to do any consulting work with my old place of employment. It's in the past and I'm moving forward.  I let folks know this last week and was 25% sheepish when my old boss (and friend) told me that while he thought it was a good idea to have me on board, he hadn't made a firm decision to pursue it.  Talk about nipping things in the bud, the bud might not have even formed yet.

Saturday, September 1, 2018

88 Alan Page

88 months since my multiple myeloma diagnosis. Significant for numerous reasons, not the least being that 88 was the number worn by my favorite Minnesota Viking ever: Alan Page. He played for the Vikings from 1967 to 1978 and is the first defensive player to win the MVP award. He is in the college and NFL Hall of Fame. And...while playing he earned his law degree and from 1993 to 2015  served as an associate justice on the Minnesota Supreme Court. He started the Page Education Foundation, has written children's books and has completed marathons.  Not too bad.

Thursday, August 30, 2018

Kicking it

The foot is doing much better, but we're making custom inserts to protect the sensitive area. Baby the foot.

Tuesday, August 28, 2018

A Post from 1 Month before Retirement

I wasn't necessarily looking for this post, but I came across it the other day. It's from one month before I hung it up at work. Nowadays I can take a nap if I get tired and I'm not trying to do it all.  I forget how fricking tired I was all the time:

Tired, Tired and Tired

Lately I've been so fucking tired. It's getting fucking ridiculous. Berenson tested my thyroid and testosterone which both can be impacted by long term steroids and chemo. Both tested fine. I started pomalyst when I started darzalex and we've lowered the dose twice because it was tiring me out. But I've been on the low dose one meg for a few months and it's only in the past month or two that the overwhelming sleepiness has hit me. It's pissing me off. Thank goodness I only have a month more of work. Afternoon are getting real challenging. This weekend, I don't even know how much I slept, but it was a lot.  My myeloma numbers are great, so I'm thinking this could be the result of 6 non stop years of treatment. I'm feeling like an old man. I'm losing muscle mass, getting flabby and super cranky all the time. Plus my eyes are getting worse, hearing is on a decline, my ability to focus on one thing sucks and I continue to bruise and bleed with the tiniest little bump or scratch.  I'll tell you what, this myeloma is no joke. It's the gift that keeps on giving. 

Sunday, August 26, 2018

How Deep is the Lake

I thought about titling this post : When do I stop giving a fuck?  I just spent a few days in Lake Tahoe visiting my nephew and his wife, with a bonus: my nephew's father was there. We had an awesome time. Hiked. Ate. Gambled. Drank. Sat by the pool. Most important was the family/friend time. As I get deeper into my myeloma journey, I have fewer friends and am generally not too interested in hanging out with other people. I get pretty frustrated how people think I am fine and forget about the whole cancer thing. (e.g. too numerous to give just one) Yes, I live pretty normally and am doing really well, but not a day passes that myeloma doesn't somehow dive into my life. Throw it all into a blender and Matt time is pretty key nowadays. My Tahoe visit was a welcome break. And it was a glimpse into how I should be living with very few fucks to give.

I learned that no one has really explored the depths of the lake. At the surface, it is at 6,225 feet. It's depth is around 1,600 feet. Legend has it there are a lot of mob bodies at the bottom. I came across this article: What's swimming in Lake Tahoe's depths? Someone did explore the bottom a bit and came across a fish that had some shark characteristics. Well that would be frightening.

In my 30's and into my 40's I didn't pay a whole lot of attention to grown up stuff. I didn't think too much about retirement, health care, and all the stuff that goes hand in hand with getting older.  Sure people tried to talk to me about these things, but I didn't particularly listen.  I used to make two trips a year to Las Vegas. I wasn't a crazy gambler, but I did like to make things exciting. In fact, and as I've said before, I was in Las Vegas when I got the most sick a couple of weeks before being diagnosed. Walking through a casino the morning after a frightening fever and a bout of chills, I had a strong feeling that I was dying.  It was the first of what has become many intense gut feelings. I've been back to Vegas twice since being diagnosed. It's been a few years, but both times I wasn't yet feeling myself and I didn't totally enjoy the trips. This recent trip to Tahoe was nice because I do feel so good, and it was basically 3 days of not even thinking about myeloma.

I am quite aware that a large reason I do feel as good as I do is because I'm not working. I know I am quite fortunate to be in this position.  But it's a duel edge sword. There are times I feel so good that I think perhaps I could have worked a bit longer. And I know there are folks are struggling much more than I am and I should just suck it up and work (see Survivor's Guilt). Somewhat rationally I know that is somewhat ridiculous, that if I were working full time my quality of life would take a big dive and I'd be drained 24/7.  I have my pension and I'm on social security disability. Myeloma is on the list of automatically qualifying for disability.  With this I can earn $1,180 month without impacting disability.  I have a chance to do some part time consulting with my old job. On one hand it wouldn't take too much time and would be nice to have the extra income, but on the other hand I want as few responsibilities as possible, including not wanting to wear slacks and button down shirts. I busted my ass for seven years to keep working and to stay on top of my myeloma. It was exhausting, physically and emotionally.  I felt like I had to work extra hard so folks wouldn't think I was impacted by my disease. I might have done too good a job, because, frankly, there were times a few years back where I felt like our human resources was my enemy and preferred I be sicker and not showing up to work. Reasonable accommodations was not a concept that was bandied about.  It got better, but this was also a function of me feeling better.  So yeah, it's nice to be wanted and I do have some ownership of my old job, but I'm not 100% certain I want to go back even on a limited basis.  I do need to decide quickly. I'm meeting with my old boss this week, and he's awesome, but I need to have an answer for him.

On a bigger scale, this opportunity is really a test of how I want to live my next/last 1 or 5 or 20 years.  I want to not give a fuck about much.  I want to enjoy each day and basically do whatever the hell I want. I found out in Tahoe, I hold back a bit. I'm not as carefree as I was 20 years ago, but then, who is. This is a little maddening. Now, more so than any other time in my life, I should be living carefree.  Arghhhh! It's a challenging balancing act. Again, I understand that I'm super fortunate to be in the position where I can think like this. But if you throw in the remnants of my dream in March when I began to wonder if I am already dead and basically in a kind of purgatory, and I'm in a mental maze. I'm working on it. And don't get me wrong, I'm enjoying life and feel good, but I want to have some sort of road map.  It's like I know Lake Tahoe is deep but I'm not quite sure what's at the bottom.

Yesterday I hung out with Leslie and a couple of friends back here in Long Beach. It was awesome and gave me a chance to hear other perspectives on the meaning of life. Today I am going walking with a Kilimanjaro friend who lives near by. So there is a balance out there. As a Libra I'm all about balance (aka indecision?)

Wednesday, August 15, 2018

H.R. 1409 Cancer Drug Parity Act

I've created a petition to the House Energy & Commerce Committee's Health Subcommittee, urging passage of HR 1409. Please consider signing.

Tuesday, August 14, 2018

Words or Lack Thereof

Not really a whole lot to report. Last Friday was my monthly darzalex infusion.  I also take 1 mg of pomalyst for 21 days with 7 days off.  We're approaching  two years on this regimen and it continues to work pretty darn well, No light chains, low m spike, kidney function tremendous. We've got my dex dosage down to 12 mg that I get with my infusion. My crashes aren't as bad as they used to be when I got a higher dose, but they still happen. Sunday and Monday I'm moody, irritable, and slightly depressed. Today is Tuesday and I'm all done with that nonsense.  Berenson has me also taking an oral steroid, medrol, at a low dose, every other day and it's pretty innocuous.

Leslie was out of town for a few days, so I had the house to myself. Gracie napped in random cool spots in the house and I binged on 23 hours of Handmaids Tale. I read the book last month and had to see the show. It's powerful and a little frightening. I got home from the doctor after treatment on Friday and hardly left the house until picking Leslie up at the airport. I had food delivered, roamed the house and hardly spoke a word for those few days. Fairly soothing. Oh and let's not forget I did watch the Vikings first preseason game of the year. They looked pretty darn good, although preseason isn't always a realistic gauge. I can guarantee by week 1 of the regular season I'll be in full on this is the Super Bowl season mode. 

Health wise I'm good. Staying fit. Warts are under control. We did x rays on my aching neck and there is really nothing new there. Osteoporosis, some degenerative disc issues. Nothing horrible and I think I've got a handle on it. I still need to add yoga to the mix. There is a beginners class tomorrow night that I'll try and make it to. Been walking a whole lot, so of course my foot aches. I have a follow up with the foot doctor later this week.  Some inserts might be all I need. I'll be 57 in a couple of short months. I can't believe it, although I've said before that this here myeloma has fast forwarded my internal clock. Old age isn't far away. 

I've come to grips with the unknown and now am just focusing on living my best life. Cliche, but true.  Next month I'll be taking an on-line course through the University of Minnesota, which, if you know me, will help fulfill a lifelong obsession/love affair with the State of Minnesota. Started with the Vikings and blew up from there. On my laundry list of oops, you can include not applying to the university when I was looking at schools coming out of high school.  I've got my class choice narrowed down to a history of landscape architecture or a course on renewable energy. They both sound interesting, but I'm not sure which I'll take. Taking both isn't an option. 

I've got a new therapist which is fantastic.  She is definitely helping me with guilt, regrets, identifying who I am, not being bitter and embracing life. Like I've said before, not working has given me a bit too much time to think and I'm feeling like I need to get back to Matt. What is Matt? Hell if I know. 

Going to Lake Tahoe in a few days. I'll see my nephew, do some hiking, gamble a little bit and have a cocktail or two by the pool. Next month it's off to Colorado to see my mom and brother.

I'm still volunteering for the Leukemia and Lymphoma Society on their First Connection program which connects newly diagnosed blood cancer patients to someone who has experience with the same cancer.  It's an awesome program.  I've cruised past 7 years since being diagnosed and just recently experienced survivor's guilt. What the hell? Let's add to that the mix.  I've heard about it. And now it has hit me. The therapist will hear about this tomorrow. Chemobrain is in full force. My ability to focus and recall names or things is hugely impacted. It was funny at first, but now it's pretty annoying. 

Wrapping up Trevor Noah's excellent Born a Crime and moving on to Spying on Whales by Nick Pyenson, which I'm super excited to dive into. 

And that's my update.

Saturday, August 11, 2018

Latest Cycle Underway

And we're off. This month's labs look great. So yesterday was my monthly darzalex infusion. Super busy at Phan's office and I got there later than usual so it was a long day.  Interesting factoid...each darzalex infusion is about $14,000. I get copay assistance from the manufacturer, Janssen, plus my out of pocket from my insurance caps at $2,650 annually.  Also started my 21 days of 1 mg of pomalyst, which is an oral drug and gets shipped to my doctor's office. Factoid two is that a 21 day supply of pomalyst is about $17,000. I am extremely fortunate that via my insurance I am obligated to only pay $40 for the one month supply. I do get copay assistance on this as well from Celgene the manufacturer and end up paying $25/month. Factoid 3 there is not a monthly cap on oral chemo costs to the patient.  More and more chemo drugs are becoming oral. So folks are going bankrupt trying to pay for their oral chemo or they don't take them as prescribed.  There is a languishing bill, H.R. 1409 Cancer Drug Parity Act of 2017, in the House Energy and Commerce Committee, which would make it so there are out of pocket caps for oral drugs just like with the infused drugs. Why it's not moving is anyone's guess. Although it doesn't take a lot of thought to come up with a potential reason.

Friday, August 3, 2018

Trip Down Memory Lane

My very post.

Saturday, May 21, 2011
I should have stretched

On May 2, 2011 I was diagnosed with having Multiple Myeloma. My girlfriend Leslie and my mom were with me when I got the diagnosis. It's a bone marrow cancer that severely impacts my body's ability to produce blood. I'd been real fatigued for about 3 months and tests after tests came up with nothing. Finally I was hospitalized for a blood transfusion, and a bone marrow biopsy identified the problem.

The typical patient for this type of cancer is someone over 65 years and an African American, of which I am neither. I'm 49 and Jewish.

How did I get this cancer? We might never know. But in thinking about things, I wonder if my years of never stretching had something to do with it. All my life I've been pretty active...running, cycling, hking, gym, etc, etc. But I've never been a stretcher. Friends told me it would catch up to me. When I'd go to the gym with my friend Jenni, she'd stretch and I'd just stand there and tell her that Jews don't stretch. My nephew Dillon stretches several times a day and believes that is a real key to good health. Well, for him, good heath is stretching, trigger points, and coconut oil. He was actually visiting when I first started feeling weak. We just assumed I was getting old and out of shape.

People weren't kidding when they said it would catch up to me. I should have listened. Anyhow, this blog is the story of my adventure of battling the disesase. I have already started chemotherapy. And my calves are already smaller from the lack of physical activity. But I am about to start working out again. Doctor says I can do as much as my energy allows me to do. I'm also continuing to work part time.

It's going to be quite a ride.

87 plus 1

87 months and 1 day since my myeloma diagnosis. Let's recognize Mike Tice, one time Vikings tight end and head coach.

Thursday, July 26, 2018

Cheryl Boyce

I've mentioned before that I've met some amazing people in the 7 plus years since I was diagnosed. One of my absolutely favorite people is Cheryl Boyce. She's had myeloma for 20 years. Myeloma, no myeloma, she is the nicest, most caring person you'll ever meet.

Cheryl is on a Stand Up to Cancer myeloma dream team which is looking at precursor conditions that might lead to an early diagnosis. Here's that story. 

And here are a couple of videos with Cheryl:

Cheryl Boyce: Living Well with Multiple Myeloma from Patient Power on Vimeo.

Sunday, July 22, 2018

Ologies Interview with Dr Durie

I've mentioned before that Ologies is one of my favorite podcasts.  Several months ago, they had an interview with Dr Durie, a leading myeloma specialist, who we had a consult with several years ago.


Guide to Living with Multiple Myeloma

This is a pretty handy guide. Bill McHugh, who is on the cover, is a pretty inspiring myeloma survivor.

Thursday, July 19, 2018

Getting My Learning On

Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most passionate, caring and inspiring individuals. On Kilimanjaro I was with 5 other patients who are not letting the disease slow them down. And earlier this week I was in Boston to spend time with patients and caregivers who are so smart about the disease and so dedicated to supporting and helping others impacted by myeloma. I also got a chance to tour the facilities of Takeda Oncology where they make velcade and are working on finding new and better treatments.  I used to feel so out of place and not smart when I was with these folks.  But for the first time, I feel like I kind of understand what they're talking about. I've got a ways to go, but I am getting smarter about the disease. I'll try and share some things I learned in a future post.

Friday, July 13, 2018

Infusion Day

My home for the next few hours. Food, Vikings blanket, laptop, phone, Darzalex and dex.

Wednesday, July 11, 2018

Max to the 3rd Power

This is infusion week. It means I did my labs last week and I see Dr Phan today before I can do my darzalex infusion on Friday. I also like to see Berenson the week of infusion. Berenson isn't a requirement but it gives me a level of comfort (and he actually is the architect of all my successful regimens). I see my lab results before I see him so I basically know what he'll say. But it's kind of like a thunder blanket for me. It's calming seeing him. He does take research blood on my visits, so there is value to me going there. I've pondered doing my infusion at his office, but it's a pain in the ass to get to his office and I do love Dr Phan. I can rely on Phan to spend time with me when I have questions. I don't want to give that up.  Also of significance, Berenson's office is at Sunset and Doheny, which is only a mile or so from where I grew up (Wetherly and Gregory Way)  and my favorite bakery (Pico and Doheny). He is also within 2 miles of my favorite deli (Canters on Fairfax) and favorite sports bar (Barney's Beanery (the original) on Santa Monica Blvd near La Cienega). So when I go see Dr B, I try to fit in some combination of these places.

It's about 30 miles door to door from my house to Berenson's office. Depending on traffic it can take anywhere from an hour to 2 hours to make that drive (up the 405 freeway).  Lately I've been leaving my house super early, so I don't have to stress about the traffic and I can get a pre-visit breakfast at Canters or somewhere else. Today I went to an alternative deli, Nate n Al's.  Growing up, across the street from us, lived the son of either Nate or Al. Maybe Al. My sister babysat the young boys and would take them to the deli as part of her babysitting duties. Not a bad gig. The sons eventually took over the deli. It's not as good as Canters, but it's closer to Berenson's office and despite leaving my house at 6:50 today, I was pressed for time so as not to be late for the appointment, I passed Canters. Al's son represented me in the childhood foot injury that may or may not have led to my myeloma (see previous post).

Berenson always has a scribe with him for his examines. Typically it's a younger person who is preparing to go to medical school. For the past 3 years, scribe duties have been covered by two brothers in succession, each of whom is now in medical school. Today he had a new person taking notes. He introduced himself as Max. I said that was my grandfather's name. He asked if it was short for Maxwell or Maximilian. I've never been asked that, I've never asked and I had no idea. Good question though. The scribe is Maximilian, which might be one of the coolest names I've ever heard. I'd make people call me Maximilian if that was name. Berenson noted that his grandfather was also named Max.

My mom adopted a dog many years ago. His name was Dillon when she got him. Same name as one of her grandkids (and of course my nephew) so she changed his name to Max (the dog, not her grandson). Max passed away last year and is really missed. He was a good boy. And for good measure, in college I had a friend named Rachel, but she went by Max. I'm not sure why. Max's mom was a teacher and taught Janet Evans in elementary school. Janet Evans, was a very successful Olympic swimmer and who (it almost goes without saying) is my favorite Olympian of all time. Tied for number two on my favorite Olympian list is Cathy Freeman, a 400 meter sprinter from Australia who is an advocate for aboriginal youth in her country, and Edwin Moses, who dominated the 400 meters hurdles for perhaps 15 years. He was tall and lean, wore glasses, and absolutely smoked everybody on the track. Note that Houston McTear could have been my favorite Olympian if only he had achieved Olympic success. He dominated the 100 yard and 100 meter sprints in the late 1970s and into the early 80s. He was world class at 17 years old. I think injuries and bad luck hindered his career. We are the same age and I remember in high school reading about him.

With regard to my health, my myeloma is doing great. Lights chains are next to nothing. My creatinin is 2.44, which is way out of failure range. I mentioned my foot issue to Berenson and he said that some folks are getting foot fractures if they are taking Xgeva, a monthly bone strengthening shot for myeloma patients who are kidney impacted. I take a relative of Xgeva called Prolia. I get a shot only every six months. He said fractures aren't common with Prolia. X rays at the foot doctor didn't show any fractures, instead they showed just a couple of small pesky spurs. Follow up at the foot doctor is next week and I imagine we'll make a shoe insert that will take pressure off the tender spot on my foot pad where the spurs are.  My neck is a tiny bit sore and Berenson recommends x rays. He thinks, as do I, that it's arthritis resulting from all the steroids I take. When I see Phan later today, I'll run it by him.

I woke up today with a nasty looking hematoma in my left eye. I have no idea where that came from. Berenson says it is nothing and should go away in a couple of weeks. I'll also mention this to Phan. I pondered having the eye doctor look at it. Leslie prefers this but I'm kind of doctored out this week, so I'll give it time to heal. Generally I bruise and bleed super easily. My body is one giant bruise, so it makes sense that my eye might be impacted as well.

I closed out the Berenson visit with a black and white cookie from the Beverlywood Bakery.

Perhaps next doctor visit I'll get to Barneys.

Oh and one last thing, I just finished the book The Bright Hour, about a woman's journey with terminal cancer. Excellent reading and if someone wants it, I'll send it to you. First person to chime in gets it.

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 cance...