Thursday, November 29, 2012

Cure Talk Panel Discussion with Dr B

For anyone interested in hearing Dr Berenson discuss his methods and philosophy, this a great listen actually. I had the chance to ask him a couple of questions.  And I'll be seeing him tomorrow. 

Listen Here to Doctor Berenson

Wednesday, November 28, 2012

On the positive side.....

Got results of monthly labs. Everything continues to hold steady.  I'm imagine Dr B will keep me on same program.

From 30,000 feet to Ground Level

I'm part of a team working on a massive bridge project here at the Port.  One of my responsibilities is to facilitate the relocation of active and abandoned oil wells that are in the footprint of the new bridge. It's actually pretty darn interesting.  But this morning, driving in, I realized there is a sort of comparison between this bridge planning effort and my medical issues. 

People at work often like to say they are looking at  a project from the 30,000 foot level. It basically means your looking at something from up high, getting a lay of land, and figuring out the basic goal. At 30,000 feet you aren't "getting into the weeds". You aren't getting into all the fine details of a project at 30,000 feet.  A year ago, we were at 30,000 feet with the bridge and oil effort. We knew what had to happen, when it had to happen and that was about it.  Now...today...we are in the weeds. Almost every day there is a new issue, a new problem, a different person freaking out about a problem.  What we try to remind folks is that having daily issues is a good thing. It means we making progress and really doing the work. All good. Stressful at time? Yes. Moving forward? Yes.

I kind of see my myeloma the same way (at least today I do).  A year ago, we were at 30,000 feet. The goal was to keep me alive, to find a drug mix that worked and that was it.  Now...today... I feel like I'm experiencing daily problems. Problems I didn't face a year ago. My team came up with a drug and treatment program that works. But now different smaller things keeping arising.  My teeth are more sensitive...a result of all the steroids I'm taking.  I have osteopenia...weakening of bones, again due to the steroids and the myeloma.  I've got bags under my eyes. I was bit by a dog...scary cause of my immune system and scary because it was close to my fistula. (And scary for the my Mom's dog....guilt on my end with that)  I'm puffy, fat, old.  My memory and ability to think straight is impacted by chemobrain. My eyes are getting worse.  I worry about my purpose in life, my legacy.  All things that last year would have seemed trivial when we were looking at myeloma from 30,000 feet. Now we're in the weeds, on the ground.  New issues pop up. I freak out. I get depressed.  Right now I'd love to crawl into a hole and escape from everyone and basically be wasted all the time. I want my brain to shut off.  But I suppose that's a good thing. It means I've made progress with getting a handle on my disease. There's going to be hiccups along the way. But I need to deal with them and keep moving forward. I'm generally back to living normal and all that.

I feel like I need to end this post with a "what's my point?"  My point is I need to allow myself to get down once in a while. It'll pass.  People around me shouldn't worry. I'm still moving forward and treating the myeloma. It's all good. Just like with the bridge.  We're moving forward. Things are happening.

Tuesday, November 27, 2012

more legacy

Add "sweat profusely" to who I am. I've always been a sweater. The Goldmans have always been sweaters. Definitely a family trait. But some of meds have really kicked that up a notch.  A leisurely lunch time walk in cool air has me sweating like a son of a gun.

Monday, November 26, 2012

Legacy

Does everyone have a legacy?  What are we leaving behind? What is our impact while we're here? Deep questions, yes. Right now, mine feels like the following....old, fat, cancer, bitter.  Not too impressive.

Wednesday, November 21, 2012

Jacked on dexamethasone today

Got my bi-weekly chemo and steroids yesterday and I'm fired up today. Really is a boost of energy. It's not the muscle building steroid, but does get me wired for a couple of days....which isn't so bad.

Cure Talk Panel on Nov 29.

Don't forget to register for the Thursday Nov 29 Cure Talk Myeloma Panel with Doc Berenson and yours truly on the panel.  3 PM west coast time. Here's the link...
http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

Sunday, November 18, 2012

zzzzzzzzzzzzzz

Sunday here. Not much to report. Went to dentist. All good. My tooth that  I thought was funky is fine. No bone loss in the toothers.

chemo this tuesday. Did blood work Friday, but did it later in the day, so didn't get any results.

Vikings on bye week. UCLA beat USC and that's that.

more later

Monday, November 12, 2012

Vikings 6-4!!!

So far, a pretty nice season. And Adrian Peterson is back to being Purple Jesus.

Saturday, November 10, 2012

This or That

This or that? This seems to be the question with cancer, myeloma or any serious illness. Do I do this or do I do that.  Every action I take feels like it needs to have a purpose. But then again, why I can't just say fuck it and go out in a blaze of glory. For instance...I've been working out fairly regularly. I'd been swimming. Then we did a bone scan and my bones are generally ok, they're starting to reflect the impact of the myeloma and the steroids.  I have no pain. So that's all good. But because of this hint of damage, I've adjusted my workout. No more swimming. Only weight bearing exercise, which helps strengthen the bones.

Food.  Everything I eat I need to think about. We're still nursing the kidneys. But this time of year is tough.. So many treats and sweets and good stuff. Most I can't eat, but sometimes I'd like to say what the fuck, I'm eating what I want.

How I react to stress and people and work and life in general, is all predicated on how my reaction impacts my body and my well being. Sometimes, it'd be nice to just blow a gasket. Might feel good.

I can have a beer now and again..moderation. It doesn't necessarily impact my kidneys, but it does slow my ability to make blood. My bone marrow is constantly stressed from my meds and treatment. Alcohol adds to that stress.

I suppose I'm figuring out a balance on all this. I do chemo every other week. I know the day after chemo, I'll be jacked up on my massive dose of steroids.  But this is followed by a day or two of being real tired. This week was a chemo week, and I was particularly tired the past couple of days.  Being tired impacts my mental state. I did do blood work yesterday and things still look good. Usually I'll see a bounce in some numbers (in a bad way) the week I do chemo. But this week, no real bounce at all. So next week, when I'm off chemo, my numbers ought to look really good.

So what I am saying? I guess I'm saying that this is a real balancing act. Everything I do, requires thinking and I must make smart decisions.  But there are times, I'd like to just turn off the mind and live it up.  Don't get me wrong, I feel pretty darn good and we're well into maintenance and things look good. But it kind of hit me this morning (on the way home from gym), that I need to be smart about things, but also need to live life every day.

Thursday, November 8, 2012

The Big Climb

Team Goldman is doing the Big Climb in March in Seattle.  It's in support of the Leukemia and Lymphoma Society, which addresses all blood cancers. Including Multiple Myeloma.  Here's a link to my page for this effort...

http://www.llswa.org/site/TR/Events/BigClimb?px=1559651&pg=personal&fr_id=1250

Cure Talk

hello all,

here is a link to an upcoming panel discussion I'll be on to discuss MM and stuff.  the doctor on this panel is Dr Berenson....my doctor, so should be interesting. 

http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

Matt

Wednesday, November 7, 2012

4.1

Creatinin 4.1 Another new low kidney. Gfr of 16.....means kidneys out of failure range and into severely damaged. Another milestone. Of course it's all about trends. So more blood work Friday and we'll see what's what. I had maintenance chemo yesterday and that typically influences numbers. 

Election day was also yesterday. 4 more years! With my health, this election took on serious relevance and importance. With Obama's win, I don't have to worry about some day being uninsured given I have a pre existing condition. That is huge!

Friday, November 2, 2012

DC Visitors

No, not Barack and Michelle. Although that would have been cool. But better yet...Erich and Jessie. We got to spend the afternoon with them, which was awesome. Very very cool people.

18 Months/1.5 Years

Yesterday saw the kidney doctor and Berenson. Everything is cool.  Kidneys slowly improving...minimizing the myeloma protein will help.  Berenson happy with everything. Maintenance continues.  In terms of my bones, the kidney doctor suggested something, but Berenson shot it down. Something about the bone drug's interaction with myeloma and shortened life expectancy. Say no more. You had me at life expectancy. I have zero pain, bones aren't too bad. So it's weight bearing exercise, calcium and vitamin d.  I continue to feel great, so let's keep it going.

Also of note, today is my 18 month anniversary since diagnosis. One and a half years. We've come a long way. Thanks all for the support and love.