Mental Games

Through the CCS Friends network, I’ve heard news of clinical trials at Dana-Farber in Boston that have shown some interesting results.  I have an appointment with Dr. Andrew Wagner on Wednesday to learn more about potential options.  I get excited to hear about anything that might save my life, but try not to get overly optimistic because I know there is no miracle drug at this time.  I don’t want to build myself up for a unbearable disappointment.  I have had to learn to play a lot of mental games with myself to cope these past several months.

It was another cold morning in Orlando.  According to the thermometer in the car, it was 32 degrees.  It had to be pretty accurate because there was ice hanging from the bottom of the orange trees.  We stopped by Aaron’s hotel to have breakfast and meet up with him for a ride to the airport.  It’s always great to see Aaron around his hotel in his element.  He’s perfect for his position as General Manager of a Marriott Residence Inn; great with people and an extremely hard worker.  He’s Marriott’s best asset!

Marriott's Best Asset

We flew into Boston Airport and met up with Ryan, who was joining us for the appointment in the morning; he’s my medical adviser!  I do pretty much whatever he recommends.  This is the most extreme house call he’ll probably ever make.  Out of an interest in a little extra adventure, we took a ferry to Hull, MA where we met George and Christine.  It was freezing as we crossed the Harbor, but the view was worth it.  At George and Christine’s they had prepared the most excellent Lobster dinner; what could be better in Massachusetts!  Thank you George and Christine for everything you have done!!!

Ferry Across Boston Harbour

Lobster Dinner


Day 16


About bhoefen

Going on a road trip.
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27 Responses to Mental Games

  1. Carol burke says:

    Hey Bret, I feel like I should call you Waldo! Where is Waldo, or that old show that sang ” Where in the world is Carmen Sandiago”! You get around fast!
    What is the name of the experimental drug?

  2. Michelle (Lindsey) Piedmonte says:

    How boring it must be after the past few weeks’ adventures to have to take a plane somewhere! Hope all goes well in Boston, and that the temps in FL rise while you’re toughing out the storms up here in the north!

  3. Don House says:

    Brett You and you family are an example of whats right and good with people in todays world, You are in my prayers everynight and I can only hope there is some good news for you in Boston.I am glad you have Ryan to lean on. Don

  4. Marianne Borrelli says:

    Welcome to my neck of the woods…… Well not too far!
    I like to see Aaron in his element as well. He is a wonderful host and GM! He’s a great brother and Dad too. Reminds me a lot of Fred. Well he dances like him anyway!
    I pray you will hear good news on this part of your journey. Your hometown medical advisors will be with you all the way!! So glad that Ryan, Another fantastic brother will be by your side. You really do have many guarding angels with you.
    Love you
    Auntie Cuz Marianne

  5. Michelle, Mario, and Simona says:

    Bet its COLD in Boston! Dont forget to get some Clam Chowder while you are there! Good luck at the doctor Bret! We are thinking of you!

  6. Uncle Kevin & Aunt Judy says:

    What better way to spend a day than seeing Christing & George, and then lobster on top of that! I hope you will feel all of our love today as you see that Doctor. You’re right–there are no miracle drugs, but there are miracles!
    Love, AJ & UK

  7. Ellen Edmond says:

    Think of you every day. I visit your blog every AM w/ my 1st cup of coffee. By the time I’m done reading about what your latest culinary delights were, I am either starved or stuffed. Please give your mom a hug from me and know that Dan, Mark, Jason and I keep you in our prayers. And it is so heartwarming to meet your wife through your eyes. May today be your best day yet.

  8. Jeff says:

    Best of luck today, Bret!!

  9. Mandy Lindsey Cayouette says:

    I too am here reading about your daily adventures with my coffee and am looking forward to hearing how things turn out in Boston. Our prayers are with you every day! 🙂

  10. Matt Boss says:

    Bret – Will be thinking about you today. Hope it’s a good direction…

  11. Caroline Borrelli says:

    bret!! are you still in MA?! I live in providence and would love to come see you guys!!

  12. Ray Ferran says:

    I’m offically addicted to the blog every morn. Your positive attitude is inspirational to all. And what a great support team!
    Of course try chowder in Boston; but ask around for Clear broth clam chowder, nothing like it.

  13. Aaron says:

    Still waiting to hear from you this morning, Bret! The house was empty with just the four of us last night! The girls can’t wait for you to get back. Ashlyn was really sad last night when I got her home and she realized that all of you were gone!

    We’re all with you!!! Stay warm, see you back in Orlando tonight!!!

    Signing off….
    Base Camp – Florida

    • Jamie Arias says:

      ret I wish I would have met you while you were at the hotel eating breakfast, I was upstairs selling Aaron’s hotel! 🙂 But you are right, he is a great GM. I have worked for MANY, and he is at the top of the list.

      The video of Aaron and Kayla dancing is not loading on the site, oh how I would love to see this, blackmail for the future!!

  14. Aunt Bo says:

    You are in my thoughts all day.

  15. JoEllen Fahy Schubmehl says:

    Positive, warm thoughts are coming your way from chilly TN today!

  16. David and Laraine says:

    Hi Bret and Shannon,
    We just wanted to let you know that you are in our thoughts and prayers today (and every day!) of your journey. We hope that today will be another “best” day!!! Brrr — it is so cold up here! You should have seen your house after the storm we had yesterday — your kitchen windows were almost totally covered with snow!!!! Everything is fine at the house, and the plants look great! I must tell you — when I went over the other day I thought that a bird (or chipmunk!!!) decided to keep warm in there — I heard this chirping sound!!!! Not to worry — it was only the smoke alarm battery getting low — which we replaced! Whew — we thought we were going to have to get Clementine and Six-Dinner Sid over to help us catch the critter!!!! 🙂 Now THAT would have been a “trip”…..!!!
    Take care of yourselves– you are so fortunate to have such an OUTSTANDING family!!!
    Our love to all,
    David and Laraine

  17. Carolina DeHond says:

    We have been anxiously waiting to hear about your Drs. appointment at Dana Farber!! We so Pray that they have a drug that will work and may produce a Miracle!!!! Thanks for the updates- we look forward to them EVERYDAY!!!

    Thoughts and prayers your way!! Can’t wait to hear what they have to say- trying not to get to excited either but can’t help it 🙂
    Take care, Craig and Carolina

  18. Jessica Scott Wolfanger says:

    Good luck today Bret! We’ll be thinking about you and anxiously waiting to hear what you find out about the clinical trial.

    A good friend of mine from college had a lot of success with a clinical trial at Duke – he’s a 2+ year survivor of stage IV glioblastoma multiforme. He also blogged about his experience over the past 2 years (including his choice of the clinical trial) if you’re ever interested. (

    Stay warm!

  19. Terry Concessi (F) says:

    Thoughts and prayers are with you and your family..Praying for good news for you today!

  20. Brendon says:

    Bret, Shannon, and Family,

    I sincerely thank you for allowing us to tag along on your adventure for a few days. Your strength and courage is the most inspiring thing I have ever witnessed. Mine and Lysa’s thoughts are with you and Shannon.

  21. Uncle Lee and Aunt Sharon says:

    All our love, thoughts and prayers have been with you today. We thought your appt. at DF was yesterday so hadn’t added anything sooner. Believe in miracles, Bret! We love you.

  22. Christine says:

    What a treat it was to see you and your devoted family. We had a great time. Keep us in mind next time you’re in New England.

    Love and good wishes, George and Christine

  23. Lisa Orlowske says:

    Good luck today Bret…hoping and praying for the best for you.

  24. Terry Concessi (F) says:

    Hopefully no news is good news….been checking blog for updates..

  25. Amanda Deusenbery says:


    I’m sorry to hear about everything that has happened to you this last year. My prayers and thoughts are with you and your family. If there is something I can do for you please let me know. Good luck today!

  26. Debbie says:

    Hello Road (and Air) Warriors!

    Pardon my delay in responding–dang snow here in Virginia got me all discombobulated.

    So, you left the warmer (??) climes of Florida and heading to the chills of New England. While you did already post today’s adventure and I will post about that–I do hope that the chilly weather helped to give a nice warm holiday glow.



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