Tuesday, June 26, 2012

On and on and on and on and on

Well folks, we're approaching 14 months. Damn that's crazy. I'm feeling good and this week I'm wrapping up the latest cycle of chemo. Berenson on July 13 and we'll see how things look. But This shit is tiring. Alway something to think about or worry about. What's my creatinin? Blood count? Am I eating right? How long can I continue working and get a full paycheck? How can I enjoy life every day? Why can't I refinance my house? How'd I become an old man? And on and on and on and on. So much to think about. Plus while doing all this thinking, I need to keep stress at a minimum. Life is tricky enough without cancer. But add that to the mix and whew.

Saturday, June 23, 2012

Twitter

For those twitter inclined folks I now tweet aka brainfart. I'm at @MPG61

Day 4, cycle 11

Wrapped up day 4 yesterday. Probably the last of treanda. Next week it's the velcade, dox mix. Monday blood work. Then 2 weeks off, then Berenson. Also coming up Krystal's wedding, Destiny's visit. An old friend of me and Uncle Jan has myeloma, and saw her for the first time in 25 years...at Berenson's office. Odd place for a mini reunion. We're both Ashanazi Jews, who might have a higher occurence rate MM. Damn no athletic skills and more likely to get Myeloma. Double whammy.

Wednesday, June 20, 2012

The Latest

Still not sure what to do with the blog. For now I'll keep updating folks. I got Phan and Berenson onto the same page re one more cycle of treanda. Thumbs up. Green light. Berenson's concern was my white blood cell count...at some point the treanda might make it permanently low..not good.But phan is confident we're not there yet. It's pretty low right now and I'll get shots for the remainder of the week to bring it up. Also a small concern that treanda can lead to other bone marrow related issues in later years. That's the trick of cancer treatment for any cancer patient...the need to balance the need of treating the immediate cancer vs potential future effects of chemo & radiation (see Robin Roberts of Good Morning America). Talked about this with Phan....our focus is safely treating the myeloma and as he put it "working to get me to 90. So yesterday was another cycle of treanda. We'll do this cycle and then definitely move me to maintenance. I'm good with that. I just had 3 weeks of no chemo and have continued to feel great. That is the best news.

Sunday, June 17, 2012

quick little update

Not much to say. Saw Berenson...he thought I could go on maintenance. Saw Phan...and he was thinking I could do another round of treanda. So we did nothing this past week. Needed both doctors to talk and agree. It's all good of course, but I wanted another round of treanda. Well, that's what we're gonna do, starting Tuesday. So now I've had 3 weeks off from any treatment and I still feel pretty darn good.

Monday, June 11, 2012

Back to Realty....4.9

Back home. Had an awesome week. So much fun, so many laughs, so much food.
Berenson today. Creatinin down to 4.9. First time under 5 since I don't know when. I'm low on blood so I'll get a transfusion Weds. Haven't had one in months, so no big deal.  And we're transitioning to maintenance...everything stays the same, except no treanda, the heavy duty chemo. And that's about it.

Wednesday, June 6, 2012

questions/answers

Just a quick post to answer a couple of questions...I haven't had a stem cell transplant. I did have my stem cells harvested and frozen, but at this time not planning to do a transplant. With my kidneys as they are, a transplant would likely destroy them.  I'm not in complete remission from chemo, but am in partial remission. The goal is to get my numbers low enough where we scale back on the heavy duty chemo and get me onto a maintenance program, which would likely be revlimid and velcade.

Feeling great!!!

Sunday, June 3, 2012

The Week Ahead

Sunday evening here in Long Beach. Tomorrow morning Leslie and I are flying to Charlotte, North Carolina to see my dad and stepmom. It's been a few years since I've seen them. We've got an hour and half layover in Minneapolis. You know who'll have new Viking gear.....that's right, me. On Thursday we fly from Charlotte to Columbus, Ohio to see my nephew Dillon and his wife Jacquie....two of our favorite people. Then back home Sunday.

The Monday after we're back, we see Berenson.  The question will be am I going to maintenance or doing another cycle of chemo. We'll see.  I continue to feel great, so whatever keeps me feeling like this, is good with me.

And that brings me to this blog.  My updates are less frequent. The crisis phase of the myeloma is behind me...hopefully for good. I'm trying to lead a normal life and not see myself as a cancer patient...rather I'm just me. Last summer was pretty darn scary. When we were struggling to find a chemo mix that worked, I wasn't so sure I'd make it to the end of 2011.  Now, I am trying to view this cancer as a chronic disease....just something that I'll always have to deal with and be aware of. I want to forget 2011. It sucked and I want to put it behind me. I find now the biggest challenge is the mental aspect, I can't let my mind wander and I can't think about what ifs. That's not helpful. Updating the blog, feels to me like a reminder of how crappy I felt. So perhaps I'll bring the blog to a close. Not sure. I'll ponder it over the next few days.  But just know that I so very much appreciate every one's support and concern. It's been really helpful. 

Anyhow, I'll update folks on the blog after I see Berenson next week and we'll go from them,

thanks!