8/18 – The Bucket List

Last week was a cool week. On Tuesday night we (the family) went to the Yankees game versus the Angels. We did this as a “meet up” with two of my Myeloma twitter friends Matt (@MPG61) and Amy (@amyygarofalo). You probably have seen me write about them before. Matt is the guy whose uplifting blog, mattvsmyeloma.com, was the first positive thing I read on the Internet and it gave me hope. I met Matt in person when I was in California this past March. Amy is a constant source of encouragement and positivity in my daily life with her cheering me and other patients on through Twitter. This was my first time meeting her in person even though she lives in Connecticut. Matt came with his wife and Amy with her husband and two boys. It was great for Helene and our kids to see that there are other families that deal with this shit and SURVIVE and THRIVE just like we do.

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I tweeted out that I supposed A-Rod wasn’t the only one on steroids that night at Yankee Stadium.

I think Matt said going to a game at Yankee Stadium was on his bucket list. I’m not much for bucket lists but there are a few things that I need to accomplish before I die … a LONG, LONG, TIME from now:

I have two Bar/Bat Mitzvahs to attend – 2015 and 2017
Scratch that – two weddings to attend – times and dates TBD
Scratch that – I have some future grandchildren I’d like to meet

I want to take a trip to Paris with Helene for our 15th wedding anniversary next year.

I will learn to play guitar – I made that one 6 years ago when I turned 40.

I want to drive up to Choate to see my niece Amanda play hockey this year.

I want to win at least ONE of my fantasy football leagues.

I want to be the number one fundraiser for my company this year – or at least win that fucking wrangler award.

I want to see Victor drive one over the fence.

I want to see Ava on the stage in a leading role. She is a NATURAL!

I want to continue my charity work. We are going to turn the #bradstrong Golfs Against Cancer into a 501(c) foundation so that we can not only help great organizations like the MMRF but also direct funding to other charities involved with Multiple Myeloma and help others less fortunate and struggling to pay medical bills, copayments etc. I have said before – even with the problems I endured with my insurance company I am very fortunate to have coverage – and pretty good coverage all things considered.

Lastly – I want to continue writing. I am thinking of adding a sports/fantasy football section to the blog. I don’t know if I am any good at this but people encourage me all the time to keep writing so I will. Look for a new section on the blog coming up within a week or two. There will be a separate link for those who are interested.

So – not a BUCKET LIST per se. Just a bunch of things I want to do. Here’s hoping I am strong enough and healthy enough to achieve them all.

I feel great today after days 1 and 2 of cycle 9 of Chemo. Did a spin class this AM and then lifted at the gym. It’s a great day to fight Cancer – again. It’s a great day to reflect and think about a long life ahead and all of the accomplishments I hope to achieve.

#bradstrong

One response to “8/18 – The Bucket List

  1. Hi Brad,
    I have been reading your blog and noticed how you always see a silver lining.

    I like that.

    I was thinking about the consultations with Dr J and Dr S and how your insurer was uncooperative and the 2 docs recommendations didn’t match. Along with Hackensack bungling your harvest and you needing more CRd therapy. All this stuff pushed your therapy in a different ‘unintended’ direction.

    It dawned on me, is that a silver lining?

    Are you right where you should be under the care of Dr J and given the pros/cons of SCT perhaps that is not where God wants you to go at this juncture. Perhaps extended therapy with carfilzomib is what is best in your future? Even if the route there is not straight forward? You are fighting the good fight and perhaps you are getting help with that fight in ways you do not recognize?

    IOW’s when you followed the insurer’s path to get the SCT you ended up in a clinic setting and with a clinician that did not make you want to be the patient best you could be at all. Perhaps, that was a sign, that no matter what they offered it was not your destiny?

    Another thought, I was wondering was what dose of carfilzomib you were on…is it 27mg/m or 36mg/m…I had 8 cycles of the latter and there is a big difference in the depth of response for the two doses. I think you might want to ask Kevin the Beacon columnist more about how he is doing.

    He was in the Jakubowiak trial and did not go to SCT. Just was on carfilzomib beyond 8 cycles. I am pretty sure Dr. J is familiar with the Jakubowiak trial too. Also, thought about you since I have tp53 as well. Lots of data supports sticking with carfilzomib with that tumor biology. The alkylators/mustargens (HD chemo) work via apoptosis and del 17p means agents that need that route don’t have it. Thus HighRisk patients do not have as great outcomes as those who do not have any TP53.

    Anyhoo, I know I may have added more to consider, yet there could be la silver lining there for you although it may not feel like it and you are focused on the insurer’s appeal. Maybe this is a good thing? Maybe that is not the path meant for you?.

    BTW, you have an absolutely beautiful family. And whatever your choices are… may they bring you the best myeloma news as good as it gets.

    Keep thriving & surviving,
    suzierose
    .

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