Saturday, November 29, 2014

Belated Happy Thanksgiving

I hope everyone had a good Thanksgiving.  

Not much to report. That's a good thing. Exciting news, while watching Florida State vs Florida game today, there was a Goldman sighting.  This might be the first college or pro football Goldman I've ever seen. 

Tuesday, November 25, 2014

The MMRF Challenge and the College Football Bowl Season

The Multiple Myeloma Research Foundation is a great organization, that has done so much to further awareness of myeloma and have helped advance treatment options, moving us closer to a cure every day.  Currently the MMRF has a challenge. All donations to the MMRF before the end of this year will be matched by the Dr Elsey Fund to Cure Cancer.  The MMRF's goal is turn $1 million into $2 million before 2014 is over.  #MMRFChallenge

To help this cause and to add excitement to the upcoming college football bowl season, I've created a bowl mania group on ESPN called Tackle Myeloma.  Starting December 20 there will be 39 college bowl games.  The goal of Bowl Mania is to pick the winner of each game and rank them based on your level of  confidence, from 39 to 1.  You get points for each correct pick, with the points reflecting your level of confidence.  It adds some real excitement to the games.  Buy in for this is $20.  And what will happen is that 50% of  money collected for this group will go to the MMRF.  Remember this amount will be matched by the Elseys. 

The other 50% goes to 1st, 2nd, and 3rd in our Tackle Myeloma group.  So, let's say 100 people join. That's $2,000.  Which gets divided as such:

$1,000 to the MMRF
$600 to 1st place
$300 to 2nd place
$100 to 3rd place.

Sounds like a win, win opportunity.  Here is the link to the bowl mania group.  The group is Tackle Myeloma and the password is myeloma. The  lineup of all bowl games will likely happen December 7.  Thanks and enjoy!!

Tackle Myeloma Bowl Mania

Friday, November 21, 2014

Work Supplies

Here's my myeloma supplies at work.  Renvela, a phosphate binder, taken after lunch, for the kidneys. Sodium citrate to flush the kidneys, also taken after lunch.  Tums to help keep my calcium up to snuff.  Purel for clean hands. A thermometer in case I'm feeling feverish, which (knock knock knock on wood) hasn't happened in a while. And Metamucil, for the clogging effects of all my other meds.

Monday, November 17, 2014

Purpose and Motivation

Caveat. This post is written after 2.5 beers.  Tomorrow is day 1 of my latest maintenance cycle. My most recent numbers were excellent. After nearly 43 months, we've got this myeloma thing under control.  It can change at any time. Or it can not change. It's a mystery.  A mystery that we all face.  As I've written before, the mental part of this is the biggest challenge for me.  I spend way too much time pondering how I got here, where I'm going and asking what the heck is my purpose.  Meaning, meaning, meaning. 

I'm over my pity party from the other day.  How? By looking forward. By telling myself I'm resilient.  Leslie stepped up big time with her dad and again impressed me with her ability to make things work.  She did that with me when I was first diagnosed and it was touch & go.  Looking at things from her perspective, it must be frustrating to go from caregiver role to caregiver role.  When does she get to take care of herself?  I'm hoping I can get her to write a post for this blog.  My fellow patients would probably all agree that myeloma/cancer might be tougher on the caregiver than on the patient.  They're trying to save their loved one, while also trying not to think of what they'd do if their loved one were to die.

Like I said....2.5 beers.  Anyhow, I as look forward and come up with some plans for 2015. (That works for me and keeps me going...making plans. I have no kids to serve as my motivation, so it's got to be something else).

In the last two days I've come across two people, two distinct people, who are, for now, serving as my motivation.

One is a guy I read about in the NY Times, who decided to go to every NY Knick game this season, home & away.  He lost his job and decided, fuck it, I'm following the team I care about. Seems silly, right?  But it's not.  It's passion and dedication and throwing caution to the wind.  All things I'm searching for in myself as I walk around with myeloma bubbling beneath the surface.  Here is a link to the story.  Kudos Dennis Doyle. Chase your dream!

Next up is Ricky Williams. Heisman Trophy winner from the University of Texas. NFL running back.  Fascinating character. I just watched a show called A Football Life on the NFL network (channel 212, for those of you with Directv (which by the way still doesn't carry the Pac 12 Network depriving me of UCLA basketball)). Ricky Williams was an atypical football player.  People didn't understand him. He's finding his way.  He gave a Tedx talk recently discussing his journey and finding purpose.  I suggest you watch them both. The Tedx alone is good, but the Football Life show puts it into context.

It's now 3.0 beers for me.  But this is all part of my myeloma journey and I feel it's pertinent to share.


A Football Life with Ricky Williams

Friday, November 14, 2014

Do Not Even Think of Saying FML in Front of Me

So today was supposed to be my scheduled monthly Berenson visit. It was to be my first visit since going back on maintenance.  But I had to cancel the appointment. Why? Nothing wrong with me.  Leslie's dad had surgery yesterday and recovery is going to be a challenge so I needed to be home to help.  The good news is I got my lab results, after yet another hiccup at the lab. How tough is it for the lab to not fuck up? I guess pretty tough. Anyhow, I received my full results and my numbers look great.  Improvements across the board after one month of maintenance. Creatinine dropped a bit. Protein and paraprotein (the bad stuff) dropped. Kappa light chains dropped.  All good.  Berenson would have told me to keep on keeping on. No changes. It would have been a short visit.  I'll see him next month. Good, good, good.

I've probably said it before, what's tough about myeloma is that it keeps going. The fact it keeps going is a good thing. It means we're still alive. At this point,  I'm confident in my ability to handle the myeloma and all the physical challenges that come with it.  The mental challenges is a different story.  Walking around with this cancer that is just waiting to rear its ugly head, makes a person want to focus each day on positives and not say no to what makes us happy.  But at times that is easier said than done.  The challenges of regular life also keeps going and keep getting in the way.  The ups, the downs, the complications, the successes, disappointment....all that is never ending.  Have you ever seen the acronym 'FML'?  It means Fuck my Life.  I absolutely hate it. Hate it!!  It's often said when something annoying but not life threatening happens.  Cable tv is out. Fml.  Someone took your parking spot.  Fml.  And while fighting cancer is hard, I've never once said fuck my life.  We accept the facts and battle on.  Today however I'm thinking FML.  Everyone says enjoy life. Every day is a gift. I agree100%.  That is my goal. But it's really freaking hard to enjoy every day when things don't go your way.  So today I say fml.  It's a bit of a pity party today.

Again, the good news is I feel great. My numbers are great. Nearly 4 years in and kicking ass.

More good news. The MMRF is also kicking ass. The Multiple Myeloma Research Foundation. They are not messing around in the fight against myeloma.  Here's another video they created that is sure to move you and sure to make you feel good about what the MMRF is doing.  Give it a watch. It's about 6 minutes long.  Also explore the MMRF website and read about NOW, to learn details on the organization's goals.   

Sunday, November 9, 2014

Short Film by the MMMRF with my friend Brad

Here's a powerful and inspiring film by the MMRF featuring Brad Coustan.  He's a force and myeloma picked the wrong person to mess with.

Film:  Tough Guy.

And here's a link to Brad's blog.

Friday, November 7, 2014

New Way to Draw Blood

I've written recently about the veins in my right arm and how they no longer like to give blood.  This is a problem since I give blood twice a month.  The left arm is off limits thanks to the fistula in the my wrist. Thus, giving blood is now a bit more complicated. 

Dr Phan's nurse draws blood from my port and we then take it directly to the lab.  Just adds a couple more steps. Today was the first time we did it and it worked pretty well. Kind of nice not having my arm jabbed 4 or 5 times looking for a useful vein. 

Thursday, November 6, 2014

Working, collecting

At work today. Monthly 24 hour urine collection stashed in a cooler under my desk. 

Sunday, November 2, 2014

42 Months

42 months since my diagnosis.  It's getting to be a long time.  That's a good thing. Other than my own stupidity with protecting my port, everything is good. This week is maintenance.  Then later this week it's time to do my monthly labs. Given my veins are effectively useless, I'll have to have one of Phan's nurses draw blood from my port and then I'll have to rush to the lab to take the blood. Annoying but that's what you get when you do chemo for 42 months out of one arm.

42 is also John Brockington. He played for the Packers in the early and mid 70s.  he was the first running back in NFL history to open his career with 3 consecutive 1,000 yard seasons.  Back then, 1,000 yards meant something. The season was 14 games and it was a bit more difficult to accomplish. 

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...