Thursday, June 6, 2013

Against the Wind

Hello, friends who enjoy reading about colon cancer.

Well, after 29 combined months, it looks like my days of Folfox-related hell have come to an end. This particular chemo is no longer working for me. 3+ years. We had a good run, Folfox.

My scan showed no tumor shrinkage, and, in a few spots, some slight growth. (We're talking 2.5cm spots, at the largest. Not huge. But, still. The wrong direction.)

Dr. K called me last night to deliver the news. It was 7pm. My son was in the middle of performing a concert for us entitled, "All things Blue". It involved maracas, a tambourine, and math problems on a white board. I was feeling enamored by his efforts, and trying not to snort out loud when the phone rang. ACK! Dr. K calling to foretell my fate. Impossibly jarring. Adrenaline going from 0-150mph in .75 seconds.

I took the call in our driveway, safely out of kids' earshot. I held the phone with a quivering hand while he dropped the latest bomb and explained what will happen next. We'll stop the current chemo, try out a new protocol. He has two in mind, one of which is a drug not even typically used for colon cancer. It's for melanoma, sarcoma, and lymphoma, but the results of my genetic testing from a few months back show that this drug may work well on me. (The world of cancer treatment is evolving so much right now. Using genetic profiles, for instance.) Option B is a drug just released last year, and it features an unpronounceable name and potentially severe liver side effects. Regaforamibib, or some such thing. Like the bad guy in a sci-fi film.

We hung up, and Neil and I stared at each other for a while, eyes darting around, half developed questions on the tips of our tongues. There's a sour feeling of impotency that accompanies the arrival of bad scan news. It makes me want to run 20 miles, to move, to DO something.

We piled the kids in the car and drove to our nearby beach. They whooped with the excitement that comes with ignoring an impending bedtime. With the windows down, the warm summer breeze blew through the car, and the radio played "Against the Wind", by Bob Seger. I listened to the words:

"And I remember what she said to me / How she swore that it never would end 
I remember how she held me oh so tight / Wish I didn't know now what I didn't know then 

Against the wind /We were runnin' against the wind 
We were young and strong, we were runnin' Against the wind" 

I shook my head and chuckled quietly, having never identified with Bob Seger lyrics until now. At the beach, the kids hollered and ran and dug in the sand. Neil and I sipped beers, stared at the water, and had a talk. And in that hour or so, we found our resolve.

So here's the deal, here's how I feel: I am strong. I can take these punches. I am going to continue to attack this thing with everything I have. And I have a lot of options left. This thing cannot break my spirit.

When we got home, we overheard the kids chatting happily in the shower: "We had a great day, didn't we?"  "Yes! This was an awesome day!"      Sigh. God bless 'em.


  1. You are a warrior! And yes, Bob Seger is amazing. Love you, Beth

  2. sending unending love!!!! xo

  3. Well time to move on from Folkfox it is. I thought since you were quoting Bob Seger I would quote Tom Petty:

    It's time to move on, time to get going
    What lies ahead, I have no way of knowing
    But under my feet, baby, grass is growing
    It's time to move on, it's time to get going

    Focus on that moment. The movement one day to the next. You are getting really really really good at it!!!

    Keep that amazing attitude Shelly and keep up the fight. You are so BRAVE you can do it!! Modern medicine will work. Harder. Now.

    Sending tons of prayers, always.

  4. Not what any of us wanted to hear. But you're amazing in your strength, Shelly. I have all the faith in the world you'll come through this soon.

    But're from Toledo. How could you not have a little Seger running through you? They may take your Mudhen card next time you come to town.

  5. love you, shelly. hang in there. xoxoxoxo, meghan

  6. You have such strength, and to those outside your inner circle such as me, it seems like you really are beating it.

  7. I love you so much and have been sending hugs and love to you... Beers beach and Bob - move over cancer Shelly is going to take you down!!! I'm off all summer and would love to get the kiddos together and I'm here to help!!

  8. Evidently I'm not super tech savvy.. The comment above is from me Heather :) xoxo

  9. I'm glad you're trying something new. Your doc's science + your resolve + Neil's support... You'll get this ship turned around.

  10. Your strength inspires me. 'Nuf said. Sending love and prayers through the Interwebs. Hope they can handle it.

  11. So much love to you, Shelly.

    Jenny from VT

  12. I for one HATE reading about colon cancer........I read because of you..... Love, Angie

  13. Shelly, you are amazing and inspirational in every way. I hold you in my thoughts and prayers every day. This is one more blow, but this too will pass. You will get through it. And we will all be here rooting for you.
    Thank you for your honesty and your humor and your inspiring blog. Sending you love and hugs.

  14. This will prove to be a minor setback in the tale of radiating love & strength that emanates from the heart of Baker-Butler World.

    Always rooting for you!

  15. I'm with Angie...I so do not enjoy reading about colon cancer, but read because I care about you. I wish this would happen to someone who deserved it instead of to you. I can think of a zillion "bad guys" who totally deserve this. I guess it is necessary to get a bad result from Folfox in order to move on the cancer medicine that will be a better genetic fit for you. So, onward and upward. Shelly, you are a STAR! (Quote from your birthday card to me freshman year.) xoxo, Mere

  16. As a nurse, I question the fairness of the world every day. I have learned, though, of the unreal power of silver linings. That sounds cliche I know. But through all of the things I have helped families to navigate, I have realized that the power of human resolve, human compassion, love, determination, the bonds of marriage and family...the best of what we are, often come out when bad things happen to good people. You are a GREAT woman Shelly. And Neil is a GREAT man. I know this because you both have to be. To be through all of this, to find the determination to fight it, to find time to write, live, be a mom, be a wife (and husband) together is a testament to those facts. No doubt it isn't easy.(gross understatement) But you guys are the best of us. The great example of what we should be. Maybe that's putting you on a pedestal, but from my personal experience, it is a truth. I am forever in your debt for teaching me some valuable lessons...and you continue to do so. I will keep you in my thoughts. Mike D.

  17. Love and prayers daily coming your way from Texas!!! Stacy and Kris

  18. Beautiful Shelly: Your attitude is right on. New is good, better. With all the advancements in the field of oncology, it is good to shock the cancer cells with something unknown to it/different/shocking.
    Let this rev you up, not let you down. Please don't let your spirit break.. it is so strong! You are incredible!!!!!!!!
    As we do everyday, we are sending you love and encouragement.
    We adore you, Shelly.
    sarah and kevin beazley

  19. Shelly, I have so much love for you and your family. I will continue to pray everyday that your strength and determination will outlast this horrible cancer, and that this new approach will turn things around. I'm rooting for you and am only a phone call (and a mile) away.
    Crystal Taitague

  20. During all your research endeavours to improve your well-being, have you considered nitriloside foods?
    There is ample material via Google. The pioneering research and discoveries of Dr. Krebs concerning nitrilosides is illuminating!