Friday, December 28, 2018

Holiday Special Holiday

As we roll towards 2019 and put the holidays behind us, it's back to myeloma business. Before giving the run down, let me just say how wonderful it was spending time with the family. Especially special was my (grand) niece and nephew. Two angels.

So it's back to it.  Yesterday was labs and this serves as a prelude these appointments in January:

Darzalex Infusion
Dr Phan
Primary care doctor
Eye exam

Thursday, December 20, 2018

Thank you!

I've gotten a couple of responses to the return to functionality questions.  I truly, really and greatly appreciate it. Thanks!

Tuesday, December 18, 2018

Return To Functionality Study

I've got a big ask for folks.  As I mentioned before, I'm working with the National Coalition for Cancer Survivorship.  They're a patient centered and patient focused non-profit working to advocate for and empower cancer survivors. They've received a grant to look at measures of return to other words quality of life after treatment ends.  They recognized the need to have someone on their review panel who has a chronic (aka incurable) cancer.  To my surprise and honor, I was asked to be that person.  This is a big deal. We're meeting in DC in February to review work to date.  On the review panel are about 10 other cancer patients.

In the interim, the panelists have been asked if we could try and get fellow patients to answer 4 questions related to quality of life.  I've created a share document, where if you'd like to give your input, you can type right into the share document.  I'll keep everything anonymous.  I've been trying to wrap my head on how best to share and this is what I came up with.  I've also asked a local support group if I can present this in January. It's all new to me, so we'll see how this works.

Many thanks in advance!!  Here is the link to the share document.

Wednesday, December 12, 2018

The Push for Oral Parity

We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409.  Fresh off the press from the International Myeloma Foundation:

The Coalition to Improve Access to Cancer Care    and its members from across the cancer patient community today applauded Senator Jerry Moran (R-KS) and Senator Tina Smith (D-MN) for introducing legislation to bring fairness to the way that cancer medications are covered by insurance companies.   The bill mirrors H.R. 1409 “The Cancer Drug Parity Act”, legislation pending in the U.S. House of Representatives that would end the out of pocket cost disparity for certain cancer treatments based solely on how insurers classify that medicine. H.R. 1409 sponsored by Representative Leonard Lance (R-NJ-07) and Representative Brian Higgins (D-NY-26) ensures that any health plan covering cancer care offer patients the same level of cost-sharing for all forms of cancer medicine. 

Now, Senators need to hear from YOU about your support for this legislation. Click the link below to take action and message your Senators urging them to co-sponsor the bill. Without hearing from voters back home, legislators are unlikely to act and support legislation. If you feel strongly about preventing barriers for access on doctor prescribed treatments, please take a moment to send your Senators a message.  

Friday, December 7, 2018

Gritty: An (accidental) hero.

It goes without saying that I'm a bit of a Minnesota Vikings fan. It's been this way for my lifetime.  Nonetheless, I'm not even going to bother getting excited for them this season and for as long as Kirk Cousins is the quarterback. How I miss Joe Kapp, Fran Tarkenton, Randall Cunningham, Daunte Culpper, Teddy Bridgewater and Case Keenum.  I don't miss Bret Favre. What is less known is that in the 1970s and into the 1980s, the Philadelphia Phillies baseball team was my number two team. I can still name their starting lineup from those years without even taxing my memory bank. Dick Allen, Dave Cash, Larry Bowa, Mike Schmidt, Garry Maddox Bake McBride, Greg Luzinski, Bob Boone, with Steve Carlton and Tug McGraw being the pitching stars. Greg Luzinki, aka the Bull, was my absolute favorite. He had power, hit for average and had some deceptive speed for his size. He played right field and had a unique side way stance to help him get a jump on fly balls to rights. And he had Luzinski calves, always a goal of mine that gets farther and farther away.

The Phillies since those halycon days have had the Phillie Phanatic as their  mascot.  The Phanatic is one of the all-time greats.  I learned this week from a Philadelphia native, that the Phanatic has had the same person in the costume since being introduced.

Earlier this year, the Philadelphia Flyers, a hockey team, introduced their new mascot: Gritty. Gritty's initial introduction was inauspicious to say the least.  As a side note, Gritty and the Phantic have made appearances together. 

Gritty's intro made him/her much beloved and the love has grown exponentially since then. Gritty has become a cultural icon. References to Gritty have been during late night talk shows, Saturday Night Live, and Gritty has even been adopted as the symbol of the left. 

This is a pretty interesting read if you have a moment. How the Left Won the War for Gritty. This article was in the New Yorker.  My friend John and I have been in the Gritty fan club since the get go.  Gritty, by no means, intended to become the left's hero or a cultural phenomenon.  But there it is and Gritty has embraced this role. 

You ask where I am going with this. Sit tight and it will all make sense.  When I was diagnosed, I was angry and depressed.  I didn't want to talk to anyone, so I started my blog as a way to keep family and friends up to date, a particular necessity during the first harrowing 10 months, when were struggling to find a chemo drug that works.  Seven and half years later, the blog carries on, despite my occasional desire to shut it down. This blog has introduced me to many fellow patients, all inspiring and all fighters in their own right.  I've made great friends during this journey. I also have been connected to several cancer and myeloma organizations and participate in a host of events aimed at helping other myeloma patients.  When I quit work last year, I recognized the need to focus my time and energy on my health.  My quality of life really sucked at that point. I also wanted to have more time and energy to volunteer more and to spend time doing whatever the hell I wanted, given I have this myeloma black cloud trailing me 24/7.  Ask any myeloma patient about the emotional challenge of having an incurable cancer hanging over you.  You'd get some common themes by asking this question. 

I suppose this all makes me an advocate, although I'm not sure about this. Last month I was a participant in an on-line panel discussion with a few other folks to talk about our role as advocates.  There's a number of smart and motivated advocates who know a whole lot about this disease. I felt out of place and hung up the phone wondering what the hell I am doing.

In the past couple of months, I've been really wondering what else I am, besides being a cancer patient and possible advocate.  Cancer has become my identity. And I honestly gotta say I am pretty darn sick of it.  It's an understatement to say it's a life changer. Sure it's made me a better person.  I know what's important in my life.  But I need to do more and be more than just a cancer patient.  Recently it hit me that I need to start saying no to invite that come across my digital desk (emails).  I'll say yes to the ones that are important, but for the ones where I don't quite see value, I'm out. It gets overwhelming,  It's serious stuff.  I'm starting to know of far too many friends who succumb to myeloma or other cancers.  Basically I keep myself in denial on my eventual fate. Although right now, denial has taken a back seat to this sucks.  

Seven and half years is getting to be a while with this disease.  There's not many things in my life where I've been committed for longer than a couple of years. 7 and a half years is a long ass time for me.  Fortunately I've made amazing and inspirational friends, linked by our glaring commonality and this keeps me going.  I would if I could, but I can't just throw my hands up and say I quit myeloma.

This role as non-quitter and a stick to itness is new to me. And truthfully it just kind of fell into my lap.  I didn't put in decades of blood sweat and tear to make my dream come true. It's all very accidental.

I could spend hours talking about all the occurrences in my sphere that make me question the accidental nature of my circumstance. I'll save for another time and  a different post. In the meantime, I continue.

Yesterday, last night and earlier today I've chatted with myself about needing to work much harder on something other than cancer.  I talk to myself about being in beast mode, but I gotta take an extra step to get there.

In absolutely no way am I in the Gritty cultural phenomenon universe. But like Gritty, this position I am in wasn't planned. We both put on skates and fell.  I have to listen to clues from the universe and I'll continue to share my experience and I'll continue to embrace the gusto of life. But I also must continue searching for some significance of everything.  Around my 45th birthday (a lifetime ago), I spoke with a Rabbi who told me that the meaning of life is to figure out the meaning of life.  This resonated with me then and continues to be my mantra today.

I will be saying no to some opportunities.  I'm sure Gritty and Gritty's people have to turn down a lot of appearances.  We'll still see Gritty out there, but in his/her soul, Gritty is supporting the Flyers. Gritty will keep on doing Gritty. I'll keep on doing me. 

Saturday, December 1, 2018

Facing cancer, 29-year-old chef Fatima Ali reflects on how far she's come

In an essay for Bon App├ętit magazine this fall, Fatima Ali, a chef who gained popularity on shows "Top Chef" and "Chopped," revealed the cancer she was diagnosed with last year has returned. Doctors told the 29-year-old she has a year to live.
But she's not letting that stop her from indulging in the experiences of living. Ali has been eating at restaurants on her bucket list, spending time with family and friends and even cooking a little for Thanksgiving. In her Note To Self, Ali shares the personal reflections of a woman who still has so much to offer.

You are 18, ripe for the world and the picking. I know you are raring to go full speed and absorb it all. You've just moved to the United States from Pakistan to attend culinary school with three suitcases, a knife roll and a slight British accent. I know you've been feeling like a caged lion that's finally been set free. Well, I hate to burst your bubble Fats, you'll never be free. But that's okay. I'm here to tell you that you will wear your chains with grace.
Enjoy the next 10 years that you have, because you will never get that valuable time back. In fact, you may not even get to see your 30th birthday. Life is unfair and something unfair does happen to you. You will get cancer. A rare form of it. And the toll it will take on you and your family is immeasurable. Forget about the physical side effects (though those are pretty bad). I'm talking about the uncertainty you will live with every day. You will have days where you lie in bed moments after waking up, feeling the softness of the comforter around you, wondering if today is the day that the cancer spreads to your liver or lung or kidneys. You somehow will live with this uncertainty and learn to thrive in it. You wear your chains with grace. 
Fatima Ali
Along the way, you'll get to do some pretty amazing things. You actually get to turn your passion into a career. You become the youngest sous chef at one of the largest restaurant companies in New York City. You will win a couple of cooking competitions and people will vote for you as their favorite. You will even get a verified tick next to your Instagram handle. You always wanted to be a bit of a celebrity and you will become one, although it will come with a cost. Your cancer opens up doors that would have probably remained shut to you at this point in your career. Your cancer makes you famous.
You do some pretty brave things. Like warpaint, you buzz your hair and dye it platinum blonde. Unfortunately you couldn't decide if blondes have more fun or not. You reach out to some of your role models and you eat at their restaurants. You get messages from around the world daily. You help people in your own way and thousands of people help you.
Reach out to mom more. That's one thing I urge you to do. I know you are far away from her in a new country with the freedom she never had at your age. Respect her wisdom and use it to advise you. Her love for you is something I cannot begin to describe in words. Turn to her when your chains are too heavy to carry by yourself. She will heft the weight like cotton wool. She is your guardian angel.
I know the thought of an ordinary existence makes your skin crawl, but sometimes you have to keep it simple, slow down, and don't take things so seriously. It may seem like a lot. Almost too much for you at times, but I'm here to tell you that with the love and support of your family, friends and well-wishers, that chain becomes a meager string around your neck. You are no longer shackled against your will. You no longer wear your chains with grace. You are grace itself.
Big Me

And now for something different