Sunday, April 27, 2014

Rounding the Corner and Coming Up on 3 Years

  • It's almost May and we know what that means. 3 years. 3 years since I was diagnosed with Multiple Myeloma. 3 years ago today I was lying in a hospital bed, waiting for a bunch of test results, wondering, worrying why I was so fatigued, why I was getting nightly fevers and chills and sweats. My daily bike ride had become a real chore. I couldn't get a deep breath. Well, we sure did figure it out, didn't we. May 2, Friday this week is that 3 year cancerversary.
  • This Friday is also day 11, aka the last day, of this chemo cycle.  Next week we'll do all the labs and I'm planning on seeing another drop in those myeloma numbers. With that, I imagine my doctors, Phan and Berenson, will give the nod to go back to maintenance. Maintenance sounds so easy compared to this ass kicking Treanda (bendamustine) that I've been on. It might kick my ass but it is also kicking myeloma's ass. So I'll take it.
  • This Friday is also acupuncture. I discovered a new place and went there for the first time last week. Hour and half, and I felt great. Needles front and back. A little electrical stimulation. A little massage. And a little healing energy. Three years ago, I would have said hooey to this stuff. But I'll tell you what it works.  When I started acupuncture  a couple of years ago, we focused on my kidneys and they came back to life. The treanda right now adds a beating to the kidneys, so my creatinin has been inching up. Not good. But with acupuncture and with going back to maintenance and with a decrease in my output of the bad myeloma proteins, I looking forward to a kidney recovery soon. I've never done dialysis and don't plan on it. I've added things to my diet that were previously restricted. So I'm tightening up on the kidney diet. I've said it before and I'll say it again, I can handle chemo but dialysis scares the living crap out of me. That's a real life changer. My plan..avoid it. Remember my first kidney doctor, doc Zoller, had me scheduled for dialysis and liked to talk about death a lot. Fuck her, we dumped her ass and I'm still around and still not doing dialysis.
  • In two weeks, it's the NFL draft. I'm 52 years old and I swear I am so excited for this year's draft. The Vikings draft 8th and I really really really hope they can get Johnny Manziel aka Johnny Football. To me, he is the second coming of Fran Tarkenton, a Viking great.  Two side notes, in the Mary Tyler Moore show's opening she is washing her car in a Tarkenton jersey. And let's not forget my recreation of the MTM hat toss in downtown Minneapolis.

  • Also of note, Johnny Manziel went to Texas A&M. I use an oil consultant at work, Tom Walker. He's a heck of a nice guy and a Texas A&M grad, so I've heard a lot about Johnny Football these last two years. I'm a believer.
  • Last night, me, Leslie and her friend Maryann went to an LA Kiss Arena Football game. Two things. They play in Anaheim, yet go by LA. And two, I was never a big Kiss fan. In fact, until yesterday, I believed that S.A.T.U.R.D.A.Y. Night was a Kiss song. Turns out it is a Bay City Rollers song. Anyhow, Paul Stanley from Kiss, who owns the team, said a few words at halftime, in theory to celebrate the band's recent induction into the Rock and Roll Hall of Fame. Also note, that the Hall of Fame is in Cleveland but they have the induction ceremony in New York. What's up with that?  Paul Stanley sounded like an old bitter Jewish grandpa. Really odd speech that he gave. I will say this, it's kind of peaked my interest in reading his biography.Two beers, peanuts and a soft pretzel. Normal Saturday night...coming up on three years, Not so bad.
  • If you're still reading, one last thing. We're up to almost $3,000 in donations for the BolderBoulder. Everyone's generosity is really overwhelming. The race is less than a month away, so I'm making a few final pleas/requests for donations. It's going to the Institute of Myeloma and Blood Cancer Research.  And here's your link....

Tuesday, April 22, 2014


Just started day one of the latest chemo cycle. Phan is happy and after this cycle, all agree that after this cycle it is back to maintenance. Yes!!! So much easier. #myeloma

Sunday, April 20, 2014

Getting Ready for the BolderBoulder

As you know, with Team Goldman, I am doing the BolderBoulder on May 26 to celebrate my three year cancervesary since my diagnosis.  I'm also raising funds for the Institute of Myeloma and Blood Cancer Research, a non-profit that is searching for a cure for Multiple Myeloma.

The BolderBoulder is accepting submittals from participants explaining why they are doing the race.  Prizes and money are possible.   Here is my video submittal.

Saturday, April 19, 2014

Cycle 3 of TTS

It's Saturday and I'm wrapping up my second week off from chemo. And it sure is nice. Feel good, have energy, not moody, etc, etc. I rode to work yesterday and have been working out.  On Monday we saw Berenson. He was pretty darn happy with my latest labs. The treanda is doing the trick. We discussed how myeloma evolves and becomes immune to drugs that had previously worked. But he also said that myeloma, when a patient relapses, sometimes remains sensitive to what previously worked. And that's what is going on with me. And that is what we wanted. We rolled the dice a bit and went back to treanda/bendamustine to see if we can beat the cancer back down. And it's working. Which I great, so I can save the new drugs for later...if/when I relapse again.

And the great thing is that Treanda The Sequel (TTS) is working so well, that we'll do one more cycle and if there is another similar drop in numbers, as we had after the last cycle, then it's back to maintenance. This is great news.  This treanda is tough, it kicks my ass. That's why this week has been so nice, no drugs being pumped into my body, no steroids. It's just me being me.

I start up again on Tuesday. Then it's 3 weeks of all the yuckiness that goes with the treatment. But knowing that I'm approaching maintenance makes it totally doable. I'm not saying that people don't need to tread lightly around me. I'm just saying it gives me comfort knowing I'm going back to maintenance soon enough.

Our fund raising for the Institute of Myeloma and Blood Cancer Research is coming along. I set an ambitious goal of $10,000. We're almost at $1,300 with a month to go. It's achievable!!  Here's the link one more time for those who want to contribute something.

We are fast approaching May 2. That is my 3 year cancerversary. Rolling right along.

Friday, April 18, 2014

First Ride to Work

Between having the flu, chemo, our office moving, etc, etc, I haven't rode my bike to work in 6 months. But I did today. It's a shorter distance than before yet still is a milestone of sorts. 

Monday, April 14, 2014

Cure Talk on Marijuana and Cancer April 15

Tuesday April 15 there is a Cure Talk discussion on marijuana and cancer.  The guest is Dr. Donald Abrams, a cancer and integrative medicine specialist at the UCSF Osher Center for Integrative Medicine at Mount Zion. The link to listen is Pat Killingsworth, a myeloma advocate, is on the panel.

Also of note, Gary Peterson, also a myeloma advocate and survivor, did a blog post on the subject of myeloma and marijuana. Pretty interesting reading.

Friday, April 11, 2014

Gray Areas

I got my monthly lab results today. I've completed 2 cycles of Treanda the Sequel.  A cycle is Tuesday, Friday, Tuesday, Friday, followed by two weeks off. In chemo terms, I'm doing chemo on days 1, 4, 8 and 11.  That's a lot. I'm wrapping up week one off of chemo. Next week is the second week off and then I start up again April 22. April 22 will be day 1 of cycle 3. Got it? 

Anyhow, my lab results after two cycles are super. We saw a nice big drop in my myeloma numbers. The Treanda still works. And that was the goal when we took me off of maintenance. We/I wanted to go back to what worked and use it till it lost it's effectiveness. My goal is save the new drugs for later. It was a bit of a risk but not a huge risk. It seems to be working out. I'll see Berenson Monday. He can review the numbers. My guess is that we'll do one more cycle of treanda and then go back to maintenance.

That's myeloma.

It hit me this week that when I first did treanda, I was critical. I was hardly working and feeling like crap. This time, I've been working full time and even though I had a minor relapse, I was feeling good. But honestly, this heavy duty chemo kicks my ass. Physically tired. My legs have felt like massive weights. My emotions and mental state have been iffy at best. I've hated just about everything and everyone for the past 2 or 3 weeks. I think yesterday I finally snapped out of this toxic doldrums. Feeling good. Mentally more stable.  And now I have one more week of good feeling. Yeehaw!!

This is just my experience of course....but cancer/myeloma is a funny thing, I want no sympathy, no pity and I don't even bring up my cancer in the course of normal activities. The other day I had the most horrible meeting at one of the port's container terminals. The terminal managers are huge. I mean absolutely obese. They are aggressive, abrasive and use their weight to intimidate people. In my whole working life, I've never experienced anything like this. The other day, a particularly hot day, they were on the attack. Me and my coworkers were absolutely blasted by these guys. In my mind, I was telling them to go fuck themselves.  But in reality I kept calm and tried my best to reason with them. We all tried, to no avail.  Mind you this was a day that my mental state was not at its best. This was a day that my body ached all over.  We were outside and it was hot.  I wanted to tell these guys to shut the fuck up, that I'm dealing with the after effects of chemo and was in no mood for their crap.  I didn't. I want no special attention, But once in a while I'd like some acknowledgement of the crap I'm dealing with.

Like my fellow myeloma patients, I bust my ass to keep everything together and moving forward. I bust my ass to be positive, to be professional, to keep my life as normal as possible. What choice do we have?  And while I want no attention, there are times, I'd like someone to say, Damn Matt, you are kicking ass.  It's a fine line between what I want to hear and what I don't want hear.  Perhaps its superficial lip service that I don't want. Sincerity is what I want.

Lately, I've really been missing the old Matt. The Matt that traveled almost every month..visiting friends when they weren't visiting me. I miss the old Matt that had energy to go have a beer and watch the final four with friends.  The old Matt who was carefree and worry free.  He's gone. But I think I need to work on recapturing some of that spirit. Yes, I am kicking myeloma's ass. Yes, I'm keeping things together. Yes, I am a better person now than I was 3 years ago. But I wish there was a way to merge the two Matts. I'd like to merge the fun, easy going Matt with the new Matt who is focused and honest and compassionate.  I love that feature in Excel....the merge cells features. It gives you such a better cell. You can center, make into a title or header or eliminate wrapped text.  Pretty nice feature.

I'll be alright. But the gray areas between what I want and what I need and what I miss and what I don't miss are huge. A lot of gray right about now. I'll work through it though.

Tuesday, April 8, 2014

interview with Kathy Giusti of the MMRF

From CNN, an interview with Kathy Giusti, CEO of the MMRF and myeloma survivor.

Don Baylor Update

As you know, Don Baylor is a myeloma survivor. He is also a baseball MVP, Manager of the Year and now batting coach for the Angels. He suffered a nasty broken femur last week.  Well, you can't keep Don Baylor down.  He's a tough son of a gun.  He plans to return to the team by the end of May.  Here's the story:,0,2698509.story#axzz2yLYhR3uy

Saturday, April 5, 2014

Wednesday, April 2, 2014


Today is 35 months since my diagnosis. We're rounding the bases to 3 years. Plan for the day on May 2? Dairy Queen.

35 is also Phil Niekro. Knuckleballer. Hall of Famer. Played until his was almost 50. His career represents longevity through guile and trickery.  When I was in high school, cable tv was a new thing. Superstation WTBS, out of Atlanta, was one of the first cable stations. So we watched a lot of Atlanta Braves baseball. I had a Braves hat. Bob Horner, Dale Murphy and Phil Niekro were my favorite Braves.

And Something from Brad Coustan

Here's an update from Brad, who's doing tremendously following his recent stem cell transplant. Inspiration Plus.  Brad's post also mentions an injury suffered by Don Baylor on baseball's opening day. Don is a baseball great, 10 year myeloma survivor, one time MVP, manager of the year and now is the batting coach for the Angels.  Scary injury.  Best wishes and positive thoughts to a speedy recovery.

A Recent Post from Pat Killingsworth

We should all know Pat by now. He's an active myeloma advocate and author. He's also a Wisconsin Badger fan, who are in the Final Four. That's college basketball's championship for you non-Madness folks.

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...