Tuesday, September 29, 2015

No chemo this week

I will be getting a procrit shot later today to help my blood counts, but it's an off week from chemo. So I am at work and stuck in meetings. This is my myeloma journey.  Can you tell I'm bored?

Cure Talk on Myeloma Diagnostics This Week

This Thursday October 1, at 4 pm west coast time/7 pm east coast, there is a cure talk discussing myeloma diagnostics and testing. Should be a good listen. Call in number is

Saturday, September 26, 2015

#BradStrong

It's only been a few month since Brad passed away. I've written about him many times. He was a father, husband, friend and a one of a kind amazing person. His energy and drive and positivity was unique, and kept me going during times I was down. His community is raising funds to put his name up on a scoreboard at the little league field in his town.  I've attached the link below, if you're interested in helping. Thanks!

Honor #Bradstrong

Wednesday, September 23, 2015

A good friend is raising funds for his stem cell transplant

Please take a look at the attached link. Kenneth is a good friend and next week is having his second stem cell transplant. To do so, he's had to temporarily move 2,000 miles from home and go on medical leave. Any amount helps.

Kenneth's stem cell transplant fund


Also, a brief note. If you were thinking of getting me that Apple watch for my upcoming birthday, forget about it and think about helping out a friend.

Thanks!!!

Friday, September 18, 2015

Those funny kidneys

My myeloma impacts my kidneys. We track creatinin (or is it creatinine? (shit I don't know) to see how the kidneys are doing. At the height of myeloma activity, my creatinin was over 8. At that time my previous kidney doc wanted me to start dialysis. This was about 3 years ago. Once we got the myeloma under control, the kidneys started to improve. When doc Zoller scheduled me for dialysis, I opted to pass (and changed doctors, she was way too doom and gloom). To me, even though the numbers suggested kidney failure, my kidneys still worked. No swelling, I could still pee, no dry skin. Since then my kidneys have improved. At best, my creatinin has been in the low 3s. They are definitely damaged, so they'll never fully recover. Normal kidney function would translate to creatinin around 1 or less. Over 4 by definition means kidney failure. Low 3s translates to severely damaged. My kidneys likely have scar tissue, but they're still working. I take a blood pressure medicine (losartan) to open up the capillaries in the kidneys and help them bounce back. My blood pressure is always low. But the combination of low blood pressure and low hemoglobin, means that I often get real lightheaded when I stand up. I simply stop, put my hands on my knees and the dizziness passes.

Recently, my new kidney doctor loosened up my dietary restrictions. Generally a renal diet means no food with high phosphorus or potassium. No dairy, beans, nut, soy, spinach, bananas and so on. Because my phosphorus and potassium numbers were good, he gave me some freedom in my diet. In the past month or two, I've had nuts, ice cream, cheese and so on. I wasn't going crazy, but I was indulging. Two weeks ago my blood work showed my creatinin had snuck up over 5...back into failure range. My myeloma numbers were good, so the kidneys weren't showing the effect of strengthened myeloma. But something was going on. For the past two weeks, I've gone back to the strict boring renal diet. This morning was more blood work. Just got the call from Dr Phan's office. Results are in. And the creatinin is back to 3.9. Oh hell yeah, that's better.  I wrote a long time ago that the thought of doing dialysis scared the daylights out of me. I've walked through a dialysis center and it's sad. Very sad. Chemo I can handle till the cows come home. But dialysis...nope, no, no way. So I gotta baby these things. They're all I got. One side note, myeloma patients generally are not eligible for kidney transplants. Because of the cancer, we're bad candidates. Anyhow, hopefully they remain under control.  And I drink tons of water. Sorry California, gotta do it.

Here's a photo of me carrying my blood from Dr Phan's office to the lab. Because my veins don't work any more, we have to draw blood from my port. A nurse or the doctor has to do that. So I go to Phan's, get my blood drawn and walk it over to the lab. That's how we do it.

Chemo next week. Wrapping up another cycle of maintenance.  Berenson early October.

Tuesday, September 15, 2015

Vikings!!!!!!!!!!!!

That sound you hear is a bursting bubble. Every year I'm excited for the start of the football season and the Minnesota Vikings prospects. This year I've been more excited than usual. I think I'm more and more overwhelmed with how fast time is passing and how myeloma is a never ending battle... there are no seasons. And because of this, I get particularly focused on other non myeloma things. The Vikings for instance. Gracie and reality tv are a couple of other things. Anyhow, last night was Monday night football, week 1. The Vikings played and stunk up the joint. Such a disappointment.

Also of note, is that we raised nearly $500 from the pick em football league. Not bad. But I'll tell you this....I need a bigger event with more ooomphhh to raise some serious dough. Oh, after week 1, I finished 14th out of 19 teams. And both my fantasy football teams lost. I suck.

It's my off week from chemo, so I'm feeling good. I take revlimid at home on my off week and that gives me night time leg cramps. But other than that, all is A-ok.  My memory continues to worsen...chemobrain.

And that is all I got.

Tuesday, September 8, 2015

and here we go...

Tuesday morning. Back to work and back to chemo. It's cycle number who knows of maintenance chemo. dex, velcade, revlimid.

I had a nice long, 4 day weekend. Saw old friends, hung out, did normal regular Matt stuff. It was great. By 6 pm last night though, I hit the wall. I was all out of sustainable fuel and was pooped. Still pooped as I get ready for work. I need to focus on the great weekend I had with great people. And I need to not focus on the aches and creaks and tiredness that I'm going to have for the next several days.

All is well. Despite the new lab effing up my results (so annoying), my numbers look stable. Only tricky one is the creatinin, which continues to rise. This could be because I've added previously banned food to my diet. Back to the strict renal diet.