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.




Free Webinar on Health Insurance and Open Enrollment

The Caner Legal Resource Center has a free webinar on Oct. 16 about Health Insurance and Open Enrollment.  Click here to register.