Saturday, May 27, 2017

Is Prevention of Myeloma within Reach?

Below is a link to a blog post on the IMF website. It's written by Dr Durie and addresses possible ways of preventing myeloma. I had a consult with Durie at Cedar Sinai a few years back. I harvested my stem cells based on his recommendation but they've never been used and will likely never be used. I've always wondered why there isn't more research into potential causes of myeloma.

Tuesday, May 23, 2017

You Got to be Kidney Me

I just got my latest lab results. Everything looks good. Darzalex continues to work like a charm.  Thursday I see Berenson and I'm sure he'll give the go ahead to switch to maintenance, which means only monthly infusions. That will be fantastic and perfect timing for my retirement/embrace life future.  I also take Pomalyst, an oral chemo drug. Not sure how that will work in maintenance. Note that this timing fits with the FDA guidelines for the drug., meaning that insurance won't have issues with it.

What's amazing to me is that as I soon as I started darzalex my kidney function improved dramatically. For at least two years, my creatinine hovered around 3.5 to 4, meaning I hovered around failure range. But for the past few months, my creatinine has been below 3 and with my most recent labs the number is 2.36. Recall that early on in my diagnosis, the number was over 8. I was on a strict renal diet and my kidney doc at the time wanted me to start dialysis.  I even had a stupid fistula (surgically linking a couple of veins in my wrist to create a super vein) to be used during dialysis. I was not symptomatic for having failed kidneys, so opted not to do dialysis. Oh and I fired my kidney doctor, who was so gloom and doom it was depressing. The thought of dialysis scared the absolute shit out of me. It seemed much more daunting than chemo. And if I'm being truthful, the thought of doing dialysis along with chemo had me thinking fuck all of it and I'd pull a Marley and Me maneuver and I'd find a tree to a curl up under.  But my kidneys hung in there and look at them now!  Amazing and quite a relief.

John Oliver recently did an in depth look at the dialysis industry, including a look at Davita, a leader in providing dialysis.  It's a scary ass story and scary ass industry. It makes me quite glad that I never did dialysis.

Friday, May 12, 2017

Ted Talk: The Magic of Not Giving a Fuck

July 28

I've set my retirement date. July 28. I am super excited and ready. I actually feel great. The darzalex is doing it's job. Today I finished my every other week treatment and starting next cycle I'll be doing infusion only once a month. That is awesome. On Kilimanjaro, it became very clear to me that I want to not work and I want to enjoy life and do the things I want to do. Right now, even though I feel good, I have no energy during the week. I go to work, come home and go to bed at 7:30 or 8. This, for me, is not quality of life. Leslie and I don't have kids, so this is totally doable. We can collect retirement and I can start collecting Social Security Disability even though I'm only 55. Multiple myeloma is an automatic qualifier for SSDI.

I have been battling an ear infection for almost two weeks. It was rather painful for a couple of days then went to being clogged and impacting my hearing. Really annoying. I had it drained the other day. That hurt like fuck. Dr Phan tells me that the dex I get with my infusion will help with the inflammation and the clearing of the ear. As I write this, it already feels more open. I also feel some of the steroid rage coming on. Must sit quietly.

My forehead is just about healed following the removal of the squamous cell carcinoma, aka non-offensive skin cancer.

In a separate post I am going to share post one of the best Ted Talks I have seen. It's appropriate to where I am currently at and is titled The Magic of Not Giving a Fuck.

Tuesday, May 2, 2017


There haven't been a lot of number 6s in the history of the Minnesota Vikings. Surprisingly Bubby Brister is one of those. I can't even remember him being on the team. Nonetheless, 6 is an operative number for today, May 2. Today represents 6 years since my multiple myeloma (an incurable blood cancer) diagnosis. There have been more than a handful of challenges, but today, at 6 years, I feel better than I have since my diagnosis. And as Bubby might have said in the huddle, let's keep the momentum moving forward.

Inching Towards Seven

In less than two months it will be seven years since my myeloma diagnosis. That means that more than 12% of my life has been spent with myel...