Sunday, April 29, 2012

Just about one year

Last year at this time, in the hospital, getting bone marrow biopsy. This year, walked dog, worked out, farmers market with Leslie. I'll take this year.

Friday, April 27, 2012

Steve Part II

Morning all,

It's been a few days since I've checked in. Today I wrap up my latest cycle of chemo. Cycle 9 of the treanda routine. Been successful. May 2 is the anniversary of my diagnosis, so taking some cupcakes to Phan's office to thank them for all they've done.

I went back to Phan's office on Monday and saw Steve. He was getting chemo, after spending some time in the hospital. It was sad but also inspiring seeing him. He has pancreatic cancer and recently had some tumors on his brain removed and had been having seizures. We talked about the journey and ordeal...pretty fricking emotional. But he's super strong and has a great attitude, and is just such a nice guy.  His uncle was with him and sounds like he has a real good support system. We exchanged phone numbers and hopefully we'll keep in touch. That's the plan.

That's about all I have for now.  Berenson in a couple of weeks, we'll discuss maintenance. Zoller the kidney doc also in a couple of weeks.

Friday, April 20, 2012


I was diagnosed on a Monday. I started chemo the very next day, a Tuesday, followed by a bunch of x-rays and the insertion of the port a cath on Wednesday. The first fellow patient that I met at Phan's office was a young man named Steve. I met him on that first Tuesday. I was getting chemo through an IV in the arm and was real nervous about what laid ahead for me, including getting a port a cath.  Steve talked to me about his port a cath; how it was no big deal and actually made getting chemo easier. Steve also joked around with the nurses, talking about movies and shit.  I'd always been of the mind set that nurses are nurses and patients are patients. Light chatter and friendly interaction with a nurse seemed foreign to me. I certainly know different now. Phan's nurses and other nurses I've met are like family to me now...part of the team.  Talking to Steve that Tuesday was real helpful. He was undergoing chemo, yet the doctors weren't sure about the root of his cancer. But he was calm, funny, and super nice.

Over the next few months I'd see Steve fairly regularly at Phan's office. His grandma usually came with him. Leslie and his grandma would chat while they waited for us to do our treatment.

It's been a few months since I've seen Steve, and frankly I was scared to ask how he was doing. Leslie recently ran into a nurse at a local hospital. The nurse told Leslie Steve was there recently, that he was hanging in there, but not doing so great.

Well, today I went to chemo.  In the entry of the medical building, coming around a corner leaving the building was a young, thin guy in a wheel chair. We both said "excuse me" as we were tracking along the same line around that corner.  I had to a move a bit. We both did a double take. He looked familiar, but he also looked unfamiliar. It hit me as I walked into Phan's office. That was Steve. I asked one of the nurses if Steve was just in the office and in a wheelchair. She said "yes". Damn that was Steve. I felt horrible for not recognizing him and not saying hi.  He looked like a different person and he looked like he isn't doing all that good.  Poor guy.  But I also had a twinge of guilt. Here I was bouncing into the building, feeling great and there Steve was not feeling great. I really wish I had stopped to say hi and chat.  The nurses said he'll be back in the office on Monday and Wednesday next week.  Those are not my chemo days but I might go back when he is there.

When I went to the support group n January, some of the other members talked about how when someone doesn't show for meetings, that it might mean the person isn't doing well or perhaps has died.  They told the meeting facilitator that they wanted to know what happened to those absent people. Pull no punches they said.  Death is definitely part of cancer and the cancer experience.  I've been so lucky to gotten to where I'm at.  But damn, I feel like I've seen a lot and have met a bunch of super strong and resilient people. Life little stresses don't mean anything in the big scheme of things.  When I did my stem cell gathering, I saw a handful of other patients every day for a week. We didn't necessarily talk much, but there was an unspoken kinship that I can't describe.

Steve's impact on me was huge. I was scared shitless, but his demeanor and personality were a welcome calming influence. Even today when I saw him, but didn't see him, it was his eyes that told me it was Steve,  They were friendly, pleasant and relaxed. I hope I see him next week to wish him well and to say thanks.

Monday, April 16, 2012

Last Cycle

Tomorrow I start up with chemo again. This week it is Tuesday and Friday, and next week also Tuesday and Friday. This week's chemo includes Treanda. That's the heavy hitter. It's the drug that finally allowed us to get control of the myeloma. After this cycle, I move to maintenance. I'm not sure exactly what the maintenance process includes. But I do know I still do some chemo, but it's less intense and maybe less often. And I'll be taking some stuff at home. And no Treanda.

So it's all good. I'm feeling super good, my numbers are still improving and moving to maintenance obviously means I am doing better. Great right?

But going off of Treanda and onto maintenance also makes me nervous. It took so long to find a drug that works, that going away from it makes me a little paranoid. Some of my anxiety has to with my personality. I'm a creature of habit, I like schedules or routines and I see most things only in black and white. It's hard for me to see the gray areas or the midpoint.   So going off of Treanda and onto maintenance is totally breaking my routine and putting me in a gray area. 

If I wear a certain shirt while watching the Vikings and they win, I absolutely will wear the same shirt the next week.  If I am going to ride my bike, I either train for a 100 mile ride, ride to work every day and so on. It's hard for me to just say I'll ride occasionally. And I've had to train myself to not obsess over my numbers.  One single number can impact my entire week. Thus I say  if I am going to treat myeloma, let's treat myeloma. Ask Dr Phan about my reaction when I've had to delay treatment for a couple of days. I hate it. I can't miss a cycle. Or ask Leslie how worried I get over one lab result that has one number that is a smidgen worse.

The problem with Treanda is that it's tough on the body. I might feel great, but it's beating up my innards. I am doing great and have had a lot of Treanda. Hence maintenance.

Don't get me wrong. I am super happy with how I am doing and excited to be transitioning. But the nerves do creep in.

Friday, April 13, 2012

Doc Berenson

We saw Dr. B today. He's happy with my progress. We talked about transitioning to maintenance but I opted for one more cycle of the current regimen. I say let's blast the crap out of the myeloma. But after this cycle we'll definitely switch to maintenance. Maintenance is basically a modified version of chemo, Less often with less powerful drugs. So it's all good. I'm doing good.

Thursday, April 12, 2012

quickie update

It's Thursday and I'm in my second week off of chemo. I feel pretty darn good. If this is how I'm going to feel going forward, I'd be pretty satisfied, although my preference would be to be at 100%.  Tomorrow we see Berenson and have the maintenance discussion. I'm inclined to do one more cycle of chemo and then switch to maintenance. My lab results this week showed more improvement, so why not do another cycle to get a bit more improvement.  There are concerns with doing too much can impact the body and some of your organs. Toxic poisons being blasted into your body tend to do that.   Been getting a shot every day the past two weeks to help with my white blood cell count. It's low from chemo, which is typical.

And that's about it.  The take away is that I'm doing great. Way way way better than I was several months ago.

Friday, April 6, 2012

End Of Week

Just wrapped up a week off of chemo. I worked every day this week till about 2:30. Not bad. I did have to get a shot every afternoon to help my white blood cell count. But the low white cell count is a side effect from last week's chemo. Otherwise I feel pretty darn good.

Berenson next week.

Go Diamondbacks!

Just turned on the Giants/Diamondbacks game and saw that Don Baylor, a former player and manager, is the hitting coach for the Diamondbacks. I mentioned Baylor a few months back....he's a multiple myeloma survivor...diagnosed in 2003.

So I have a new team this year, the Arizona Diamondbacks.

Monday, April 2, 2012

11 Months

Today is the 11th month cancerversary from my diagnosis.  Wow, what an eleven months. I'm still here.

Sunday, April 1, 2012

Test Ride

Did it! My goal is to ride my bike to work again. I used to ride every day, but it's been about a year since I last rode to work. I actually knew something wasn't right with me last year, when the ride I did every day became a whole lot of work. At first I just thought I was getting fat. But there were days where I could hardly take a deep breath.

Anyhow, today, a sunday, I did a test ride. I rode from home to work and back. It was a super slow ride and my legs now feel like jelly. But I was able to breath and completed the ride. Hot damn!

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