Sean’s Burgundy Thread: My New Year’s Myeloma Resolutions For 2011
Happy New Year!
As the hustle and bustle of the holiday season fades away in the rear-view mirror, I find myself entering the third year of my journey living with a diagnosis of multiple myeloma.
And as with many things in life, I have learned as much about what NOT to do, as what to do. Sometimes the lessons haven’t been easy.
Therefore, in 2011, I hereby resolve:
1. To stop referring to my pain medication as ‘Oxy-cotton-candy’. My pharmacist knows that I use the drug to control bone pain, but I swear that she often times mutters something under her breath about ‘my license’ and ‘jeopardy,’ or some such thing.
2. To never again show off by spouting tongue-twisters like ‘immunoglobulins’ within earshot of people not savvy to myeloma. Any six syllable word with ‘glob’ in the middle seems to be a surefire turn-off to the uninitiated.
3. To teach my wise-beyond-their-years daughters that second opinions aren’t necessarily the best course in all situations. ‘Go to bed!’ ‘I want a second opinion, Daddy!’ Sheesh…
4. To not be drawn into the intoxicating world of waiting room, myeloma war stories. You can’t win these one-upsmanship duels. There is always that one tough guy in the crowd who throws out ‘Oh, yeah? I’ve had fifty bone biopsies, and I enjoyed every stinking one of ‘em!’
5. To not have any misguided anger toward the UPS courier that delivers my monthly package of 21 Revlimid pills that cost $7,400. Or conversely, to not bear-hug the UPS courier for delivering the 21 Revlimid pills that are keeping me above the grass. I vow to leave the UPS drivers alone.
6. To not say, even in jest, that my treatment must be just about finished because my insurance coverage is, also, just about finished. The walls have ears.
7. To stop blaming all of my personal foibles on dexamethasone, although it is the truth.
8. To stop joking around during my weekly maintenance chemotherapy infusion sessions that leave both the Oncology nurses and me exhausted and wondering, thirty minutes later, if we’d remembered to administer the six second push of 2 mg of Velcade. I also realize that it is not appropriate for me to shout out, “The next round’s on me!”
9. To stop trying to convince my wife that during the maintenance phase of treatment that pepperoni pizza has significant anti-myeloma properties and that nachos are necessary for the efficient distribution of Zometa. She is on to me. So are the thirty-five pounds I lost during my first year of treatment.
10. To be more careful when telling others that I have myeloma’s C.R.A.B. symptoms. I shouldn’t have been so surprised when my first grade daughter told her teacher, “My dad is doing better even though he still has ‘CRABs simpletons.’” Embarrassing on many levels.
11. To stop wasting valuable time lobbying for warfarin to be given a kinder, gentler name: peace-farin.
12. To no longer insist that my daughters dress up like leukocytes and neutrophils for Halloween.
13. To more quickly recognize that glazed-over, let’s-get-outta-here look on my friends’ faces as I describe the differences between heavy chains and light chains or the process of placing a central port into a jugular vein.
And so on.
All silliness aside, I do resolve to adopt my good friend Dru Stowe’s simple, but wise approach to life: ‘No matter what, I decided a long time ago that today was going to be a great day!’
Even though times can be tough, sneak in a laugh or two when you feel like it. I am pulling for you. I wish a blessed, healthy, wonderful 2011 for each of you. And let’s keep connected out there in Myelomaville!
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Amazing how well we know each other and yet we've never met!!!! I needed to read this, lighten my emotions that are raw at this time. Prepping for my third sct and last, finally going for the allo.
As always Sean, Thanks for the laughs, the insight, the shared reality! Happy NEW YEAR!
ABSOLUTELY HYSTERICAL!
Thanks so much for a few minutes of light heartedness. It goes a long way! HAPPY NEW YEAR!!
Thanks for the lighter side. I had a mini melt down yesterday just feeling sorry for myself. I told my wife I was just sick and tired of being sick and tired and I'm only 7 months into my dx. I've finished my second SCT and now waiting for that magic feeling of renewed strength and energy. Still waiting!!!!!!! Any suggestions?
Hey! Even though we find ourselves living on the edge at the moment, life is still about balance. MM certainly throws us into imbalance, don't we know! Laughter, lightheartedness, mirth, and the like, give us a chance to break our patterns and think of other things or look at matters with a different perspective, if only for a few seconds.
Best wishes to you all as you tackle the challenges that MM throws your way.
BTW- momentarily 'melting down' isn't such a bad thing. I'm no psychologist or psychoanalyst, or psychiatrist or psychopath, but feeling the reality of our situation, but not being paralyzed by it, seems to be a good thing. There are serious issues afoot, but do not give up hope. There are still many things that you can control - including your attitude. Ralph Waldo Emerson said "What lies behind us and what lies before us are tiny matters compared to what lies within us." You are made of the right stuff! Happy New Year!
Dear Sean!
I had an honor not only to read your blogs but also to meet you twice last year in UAMS when you came to visit my daughter Lina during her treatment.Your talent helps all of us!!!
Best wishes to you and your Family in 2011!!!
I enjoyed reading this. Have a happy and strong 2011 everyone.
Valentina, it was MY honor to meet you and Lina at UAMS. I hope that you are both well and will enjoy a wonderful 2011 in beautiful Northern California!
Frank - thanks for putting up with my silliness. Sometimes with MM, tears are appropriate and sometimes laughter (the L-Spike)is the prescription. Hope you have a fantastic 2011!
Sean
Sean, that really brightened the start of my first really well day after my auto sct (the little babies going back in at 4pm on Christmas day).
Together with Lorna and Paula and Ruth and several others over here in England, we all using the laughter bug to get us through.
Well you have to when you know someone in the womens ward who you has the same condition, but the ward Sister won't let you go see her because your male....can see me pullin out the Tina Turner gear again!...lol.
Sean,
Thought it was just me that got that glazed eyes look explaining free light chains. Responses "oh I belonged to Kappa ....sorority!!!!" Thanks for the humor.
Hi Sean,
My husband and I met you in the MIRT waiting room as we were on our way out from our first real check up in Nov. 2010 (if my dex/chemo impaired brain is remembering correctly). I really enjoyed your new year's resolutions and they gave me several good laughs. I am now on my second round of revlimid in my first year of maintenance. So far so good, but the velcade is definitely causing some mild neuropathy. I pray it does not get worse. I am wondering what, if anything, you know about metanx.
I have been taking it since I started maintenance, but it is not covered by insurance and is $60.00 a month. I don't want to stop it in case it is helping since I do have some neuropathy, but have not found too much about it on the internet.
Keep blogging and congrats on heading on to the finish line. Best of luck to you. I will never regret my decision to go to UAMS. I would probably be relapsing now and ready for a second, useless stem cell transplant on the the protocol they use here (the transplant oncologist at the Univ. of Iowa gave me three years so I would be halfway to the grave)--have had a complete response since April 2010 and hope to keep it that way.
these are great resolutions, Sean. i'm proud of you, and proud to know you.
Too funny for words!!! I am grateful to have found this web site. When we try to talk to outsiders (non-cancer people) about our issues, we either get the "glazed look" or the "welling up with tears pity look"...
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