Thursday, September 27, 2012

brain dump

Today is my monthly major lab day, i.e. 24 hour  pee collection. It's pretty humbling bringing a cooler to work with my pee in it.  Sample questions from co-workers:  "what'd you bring us to eat' "Can I hae some" "why are you taking your lunch into the bathroom"  My standard response is "I don't think you want any of this"

Next week is Berenson, so this is in preparation for my monthly appointment with him. We usually have the results before we even see him, so I have a good idea of what he'll say.   It's hard to believe that I'm coming up on 17 months of dealing with this. Wow, just wow.  I feel good, and everyone says I look like I don't have cancer. So that's all good.  My perception of cancer has certainly changed. It's a powerful disease, changes everything in your life....but not at all how pictured it.  When first diagnosed I had vision of losing 40 pounds and throwing up every morning when I was walking Gracie.  That hasn't really happened.  I have become more aware of the health care and insurance crisis in this country.  So many people work and work and work, simply to maintain their insurance. It's a real balancing act between doing what's right for your healing versus doing what's needed to stay employed and insuranced. 

This whole thing has given me a confidence boost though. More comfortable in my own skin and more comfortable with telling the truth. My Libra tendencies to have everything balanced have kind of gone out the window.

Trying to put together a fund raising event that I can propose to the LA Chapter of the LLS, which focuses on all blood cancers.  I have a good idea brewing, but gotta work out some of the details before it's ready to be unveiled.

And that's about it, for this brain dump. There's more up in there, but I don't want to delve too deep....on a typical day, I try to tell myself to not think about it and to live a normal happy life.  But carrying pee around for 24 hours kind of forces the thought process.

Tuesday, September 25, 2012

Long Haul

Back to chemo today. Maintenance. Everything is still looking good. But still it was such a slap in the face reminder. In talking to Dr Phan, we talked about needing to do a bone scan..just to see how things are going. I'm not having any bone pain, but we gotta be diligent. He also said that alcohol is a bone marrow suppressor, meaning it might impact my ability to make red blood cells. I am a little low right now. So I'm back to the very occasional one beer. I guess that's ok, but it also takes away my little slice of normalcy. Fucking myeloma sure does disrupt everything. Like I said, I'm doing great and feel great, but damn, once in a while I'm throwing myself a pity party.

Friday, September 21, 2012

The Big Climb in Seattle

Back in my younger days, I had a list called the 45 by 45 list. Kind of like a bucket list....but I want to be clear that my list pre-dated the Bucket List movie.  It was a list of 45 things I wanted to accomplish between my 44th and 45th birthday.  One thing was to do a building climb.  I did the Big Climb in Seattle. It was awesome. And it was to raise funds for the Leukemia and Lymphoma Society.....which is actually an organization that provides support and education for all blood cancers, including multiple myeloma. 

Fast forward 5 years and irony of ironies...I have a blood cancer.  So in March of 2013, I'm going to do the Big Climb again and raise funds for the LLS.  Funny how things work.  But this time, doing it as a team....so far I have team commitments from Matt Arms, Destiny (my niece) and Justin (her fiance).  Registration isn't until November, but got to get in early, cause the number of registrations is limited.

Good stuff.  Here's a link to the big climb website:

https://secure3.convio.net/llswa/site/SPageServer?pagename=BC_homepage

4.33!! hells to the yes

Creatinin today is 4.33. Woohoooo!  Yet another record low.  There's also a calculated number that is then used to identify kidney failure. It's the GFR and if it's less than 15, kidneys are in failure. Today my GFR is right at 15, which means I am inching out of failure range. Very good way to start the weekend!

Marijuana and Cancer

I wish Obama would be a little more progressive with his position on med pot.  Interesting stuff.....

http://www.sfgate.com/health/article/Pot-compound-seen-as-tool-against-cancer-3875562.php#photo-3469070

Myeloma Cure Panel

yo yo yo....there's an internet radio show that does a monthly show with a myeloma doctor and a panel of patients with questions. the next one is tuesday september 25 at 1:30 (west coast time).  This month I'm on the panel. So if you have an hour and are interested in hearing the perspective of other patients and other doctors, here's the link......

http://trialx.com/curetalk/2012/09/myeloma-cure-panel-on-25th-september-2012-430-pm-hurry-and-register/

Friday

Dang, super fast week. Doing blood work this morning. Results later today. More detailed update this weekend.

Tuesday, September 11, 2012

Today

Today: bike planning conference, work, two meetings, chemo, walked gracie, workout, now tv. Not bad. Pretty darn normal.

Kidneys continue to improve. With my creatinin at 4.42, I'm right on the cusp of moving out of kidney failure category and into severely damaged. That's huge. It means they may not be totally trashed after 16 months of chemo and having the myeloma protein beating them up. What's interesting is that after two cycles of maintenance chemo, my protein counts have decreased. That's a good thing and a real pleasant surprise. Going onto maintenance had me nervous, but I guess we're doing this thing right.

Friday more blood work. Fingers crossed for more improvement.

Monday, September 10, 2012

4.42

Hells to the yes! Easily the best creatinin number yet. Need to see a trend, etc, etc. But I'm super excited by this number. Come on kidneys! Keep on coming back!

Friday, September 7, 2012

Yo yo yo!

Good visit with Dr B. Maintenance doing its trick and we keep the same program.

Wednesday, September 5, 2012

Whoops.

September 2 passed without notice.  That's a good thing. It was my 16 month anniversary from my diagnosis. Didn't realize it until today. That's a very good thing.

Monday, September 3, 2012

Vegas

Last year, about a month before the diagnosis, I was in vegas and got so sick. Fever, chills, fatigue. As I might have mentioned before, I had a super strong almost vision that I was dying. It was a powerful and scary feeling. Suffice it to say, at that moment I knew something was wrong.

Fast forward 15 months. After lots of chemo, hospital visits, etc, etc, I made it back to vegas this weekend. Felt great, had a good time. Watched a lot of college football, lost most of my bets (Which I attribute to wearing of my vikings visor), and pondered how far I've come. Whats funny, is I went with Matt Arms and both nights there we didn't even make it to 10 pm. Way to enjoy the vegas life, old timers. Still a good trip.

Now home and in the final home stretch to the wedding.  I downloaded the blogger app to my phone so updating as I walk Gracie.

Sunday, September 2, 2012

Sad Day

Just got news today, that my friend Steve from Dr Phans office passed away today. He'd been in the hospital the past week but was able to go home last night, where has passed away. May he rest in peace. He was a real fighter.