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.




What is The Difference Between Terminal and Incurable Cancer?

Today's read: Incurable vs Terminal