Road Medicine

My appointment at Dana-Farber yesterday was another routine visit: blood draws, EKGs, and an appointment with Dr Wagner, who has been an excellent doctor.  He had been been reminding us of someone for a while, and we finally figured it out and asked him about it.  Before I could say Gary Sinise, he said Lieutenant Dan, right?  Am I crazy, or do you see the resemblance?

I have now completed one cycle, four weeks, on Crizotonib.  We won’t know for sure whether or not the drug is working until the end of the second cycle when they do a CT scan and compare it to the original scan.  Dr Wagner explained that if there are any new tumors, or if the existing tumors have grown more than 20%, then they assume the drug is not effective and take me off the trial; anything less and they will keep me on the trial.  From my own subjective measurement, I am fairly confident that the tumors have already grown at least 20%.  This makes things difficult; do I continue paying for expensive and timely trips to Boston when I’m fairly sure the drug isn’t working for me?

In the event that Crizotonib is ineffective, Dr Wagner mentioned a few other potential drugs that I could consider next.  However, they sounded more toxic with lower chances of success.  As I sat in the hotel last night, I started to feel some depression as the reality set in of growing tumors and no success path.  I feel this way each time we head to Boston, and always look forward to getting back on the road, my best medicine.  Unfortunately this was delayed once again due to a northeastern snowstorm.

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About bhoefen

Going on a road trip.
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18 Responses to Road Medicine

  1. Carol burke says:

    Bret, I remember Holly having those moments of depression. One particular time she came to me to talk. “I am not ready to go” She said. With as much love and compassion knew how, I softly replied “When you go to heaven you will be taking care of the babies, and you know when your little brother goes he will be driving you crazy!” I then asked Holly ” What do you think I will be doing when I go to heaven” She laughed and said “CLEAN”! Of course my response was “I don’t want to clean”!
    Bret, I am so impressed with your honesty regarding your feelings. You show a true courageous spirit and dignity. Get back on the road! Can’t wait for the next adventure!

  2. Cuzin Katie says:

    Sorry the snow storms are holding you back cuz. I’m thinking about you and sending warm vibes from NOLA… so after you finish your California tour you should turn around and make the sweep back through the South! Its Mardi Gras season…. you have to see this first hand 😉 xoxo

  3. Nannette says:

    Hang in there….we’re thinking of you.

  4. Mom says:

    Definitely Gary Sinise! I didn’t see it before…but you nailed it!
    Hurry back, Bret and Shan…The road awaits…the car is gassed…and Dad’s bike is ready.

  5. HP says:

    Perhaps you can talk with Dr. Wagener about the possibility of a satellite Dana Farber campus in a less snowmageddon-prone area? 🙂

    Thinking of you guys always and sending you warm thoughts for open airports and clear flights so you can get back on the road. Jen and I would love to come out to join you somewhere on your ride.

    Carol put it perfectly: Your honesty is courageous.

    Love to you both!

  6. scott says:

    I think it’s only natural to have those thoughts… keep the thoughts positive, that, love, and hope truly is the best medicine. In New Jersey here, we felt the brunt of that stupid storm too, lot’s of snow shoveling this morning in between catching up on the blog. Thanks for sharing something so personal!

    btw… it was Liuetenant Dan, and the resemblance is pretty spot-on…

    Regards,
    Scott

  7. Cousin Mike says:

    Dear Lt. Dan,
    I think you underestimate my cousin Brett. I may be a “stupid is as stupid does” Phys Ed teacher, but I’ve learned from my mama that “life is like a box of chocolates”. As I was “Running in a good direction” across the country, it became clearer than a computer generated feather floating through the sky: sometimes “sh*t happens”, but that doesn’t mean that it’s not an extraordinary life.
    Brett,
    at least the one good thing about visiting Boston during a snowstorm is that they’ll give you “all the Dr. Pepper’s you can drink”. Then you can head back down south and think of all the things you can do with shrimp… you can even invite Dr. Wagner to be your “shrimp boat captain”. When in doubt, just listen to your mama cuz, she always had a way of explaining things so you’d understand them. But remember, you’ve got your girl Jenny (Shan) by your side.
    Hmmmm, I’ve just realized that this comment had absolutely no point, but instead just rambled on with ridiculous references… that’s ok, I’m just here for annoying comedic relief anyways, like C-3PO or Jar Jar Binks in Star Warsaw, er, I mean Wars– so I guess it’s like any other post of mine. Ah, all is normal again.

  8. Cousin Mike says:

    Or, someone will read my post again and be incredibly impressed by how deep, sensitive and S-M-R-T this cousin Mike guy is. Nah, I didn’t think so either…

    (S-M-R-T is a quote from, according to Ryan’s best man speech at my wedding, my favorite philospher–HOMER)

  9. Emily I. says:

    If you need a place to stay when you get to the San Diego area Dan’s best man, Jason, offerred his place to you guys! Also said he’d help show you around or whatever you need while you’re out that way. Let us know if you want to get in touch with him. ❤

  10. Uncle Lee and Aunt Sharon says:

    Dear Bret,
    Truly your honesty and courage speak wonders about the amazing person that is you.
    We like what Scott wrote – stay positive ( I know we have absolutely no idea how tough this must be – especially when things don’t look like they’re going in a positive direction, but REALLY try hard because if anyone can do it……. YOU CAN !) and keep hope alive and kickin’ in the depths of your heart and soul. So many times you hear of someone facing only months with a terminal illness and despite all logic and all medical reasoning, suddenly, sometimes totally unexplainably, they take a turn for the better or even become disease free. It may not make sense medically, but it’s been documented and it DOES happen. There is so much to be said about the mind body connection and the role a positive attitude, hope and faith play in healing. BELIEVE with all your heart and soul that all things are possible if you believe. Having that faith in the unknown is being sure of what you hope for even when you cannot see what’s ahead. Corny as it may sound, maybe you can make up your own little mantra to repeat to yourself every morning to help re-arm you with positive energy for the day. Maybe while you’re brushing or flossing so you can stare right in the mirror as you say it. Okay, now I’m probably sounding corny. But you get what I mean.
    We also love Mike’s wonderful insight through his comedic relief and great movie/tv pics! Leave it to him to come up with the best! He is so much wiser than he gives himself credit for. 🙂
    So by now, we hope you have left the snowy Northeast and are headed back West or even better, are back in Vegas, getting ready to head to California’s, hopefully, sunny, warm skies. Sounds like everything is ready to go……so shift the thoughts of warm, sunny skies into gear as you ride in that positive, hopeful and good direction. We love you, Bret!

  11. Jessica Wolfanger says:

    Thinking of you Bret…hoping you get back on the road soon! Looking forward to hearing about your warm SoCal adventures from cold and snowy DC!

  12. Aunt Bo says:

    Bret,
    Hang in there with your study and keep positive thoughts…you never know what is going to happen. I think part of the difficulty right now is the amount of time traveling back and forth to Boston has taken away from the road trip. No one would have predicted the terrible weather Boston has had this year and just so happened to be when your appointments were scheduled. Murphy ’s Law again????

    I am hoping things get easier for you once you get back to sunny skies and back on your bike. Winter, grey sky and snow deflates all of our moods. Remember to ride in a good direction. You continue to be my inspiration…my Christmas bracelet reminds me of you and your wonderful spirit everyday—all day

  13. JoEllen (Fahy) Schubmehl says:

    Bret,
    As I read this post, my memory drifted to a poem I once read about geese. Perhaps it was the “feather” from Forrest Gump reference that brought it back to me. I can not hold a candle to the witty comments Cousin Mike puts together, but I think that some of the “lessons” the flock abides by may pertain to you and your “flock”:

    LESSONS FROM GEESE

    by Milton Olson, adapted by Angeles Arrien

    FACT 1
    As each goose flaps its wings it creates an “uplift” for the birds that follow. By flying in a “V” formation, the whole flock adds 71% greater flying range than if each bird flew alone.

    LESSON

    People who share a common direction and sense of community can get where they are going quicker and easier because they are traveling on the thrust of one another.

    FACT 2
    When a goose falls out of formation, it suddenly feels the drag and resistance of flying alone. It quickly moves back into formation to take advantage of the lifting power of the bird immediately in front of it.

    LESSON

    If we have as much sense as a goose we stay in formation with those headed where we want to go. We are willing to accept their help and give our help to others.

    FACT 3
    When the lead goose tires, it rotates back into the formation and another goose flies to the point position.

    LESSON

    It pays to take turns doing the hard tasks and sharing leadership. As with geese, people are interdependent on each other’s skills, capabilities and unique arrangements of gifts, talents or resources.

    FACT 4
    The geese flying in formation honk to encourage those up front to keep up their speed.

    LESSON

    We need to make sure our honking is encouraging. In groups where there is encouragement, the production is much greater. The power of encouragement (to stand by one’s heart or core values and encourage the heart and core of others) is the quality of honking we seek.

    FACT 5
    When a goose gets sick, wounded or shot down, two geese drop out of formation and follow it down to help and protect it. They stay with it until it dies or is able to fly again. Then, they launch out with another formation or catch up with the flock.

    LESSON

    If we have as much sense as geese, we will stand by each other in difficult times as well as when we are strong.

    I especially like Fact 1, and we will certainly be “flapping” with extra vigilance and enthusiasm for you. Safe travels.

  14. Uncle Lee and Aunt Sharon says:

    Kudos Jo Ellen! That was a GREAT post!

  15. Debbie says:

    Hello Road Warriors!!

    While chuckling earnestly from the post from Cousin Mike (he’s a hoot)–he nailed it. Never underestimate the power of peas and carrots, a long run (or a long bike ride) and an amazing sunset over the desert. You do have your Jenny by your side and she’s got you.

    I could say something inspriational like “its always darkest before the dawn”, but hell–I’m sure you’ve already heard that and thought that a million times. But I do want to point out–it’s been TWO MONTHS since the doctors said by this time, you wouldn’t be able to walk.

    Ok, you may be limping a little bit. But you’re definately walking, riding helicopters and getting your kidneys rearranged in the back of a Jeep. You’re still walking–you’re still riding in the good direction and you’re still smiling and looking forward to the next adventure.

    While I am sure Dr. Dan may be giving you the usual blather of “best case/worst case scenarios” keep in mind–he doesn’t know YOU and your strength and courage. Which in the past 2 months has blessed all of us–encouraged all of us–and made us better by going on the ride with you guys via the internet.

    Take time to ponder and consider, of course–and you’re going to–that’s a given. But also be amazed at your own self and what you’ve accomplished and still will.

    There is still miles and miles of road ahead of you–and many, many adventures.

    Love you guys!

    Sissy

  16. Danielle West-Chuhta says:

    Bret:

    I recently re-read “The Secret.” The focus of this book is on positive thinking. One of the contributors to the book summed it up best by saying “You end up attracting to you the predominant thoughts that you are holding in your awareness. Whether those thoughts are conscious or they’re unconscious.” ~Rev. Michael Beckwith~

    Please stay positive and keep on riding in a good direction….:)

    Danielle

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