With My Fingers Crossed

After a sleepless night, we were up early to head back to Dana-Farber where I would start the Crizotinib (PF 02341066) clinical trial at their Clinical Research Center.  The day started with some preliminary tests; another doctors exam and a few EKGs.  Then we met with the research nurse in charge of the study, who laid out the guidelines and discussed the potential side effects.  I was familiar with most of the information, but it resonated louder when I was about to take the drug for the first time.  The most difficult thing emphasized is that while on the drug, we absolutely cannot conceive a child because this is a new drug and the effects on a fetus are unknown.  Shannon and I always wanted kids, but delayed for a time when our finances, careers, and education were in order; as of today, it is no longer an option.  Our nieces and nephews will continue to have a lot of extra attention.

There are no guarantees with this drug, however, this is the best chance I have.  The regiment: two 100 mg tablets and one 50 mg tablet, twice a day.  The most common side effects: distorted vision (streaking), joint pain, mild nausea, and diarrhea.  All small prices to pay for a longer life.

Fingers Crossed

At 1030, with my fingers crossed, I took the first dose.  I was anxious to get into this trial and start as early as possible to hopefully halt my growing tumors.  However, when it was time to take the first dose I felt some apprehension.  How am I going to respond to this drug?  What if I have some unknown horrible side effect?  This is a chemotherapy.

No Turning Back

After taking the drug I did experience some slight abnormalities.  You become paranoid and it is difficult to seperate normal fatigue, nausea, and stomach pains from the effects of the drug.  At this point I have chalked it up to too little sleep and a McDonald’s lunch.  In the movie “Supersize Me” they refer to this as the McGurgles.

Day ??

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About bhoefen

Going on a road trip.
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29 Responses to With My Fingers Crossed

  1. Mom says:

    Dear Bret,
    The Peglow area is definitely sacred ground for all of us … I share your desire to give that gift to my remains. “My old Honda” mingling with your “old Harley”. ( A Ford?!)
    However, no one is going to need to drive anywhere to think of Bret Hoefen. The “Love that you are” is in every fiber of our beings.  We take you wherever we go…we are you…you are us.
    It was not coincidence or through neglect that you were raised without formal religious training. That is a personal journey that you have all navigated well and differently. For me, it comes down to this, “Baba nam kevalam” – a very powerful ancient mantra meaning Love is all there is…Or more loosely translated “Drive in a good direction.” I think that can be found in all the scriptures and sacred documents. Where these sacred documents differ is what causes trouble…human passion attached to ideas. Love is all there is. Everything else is unknowable…we have to let it unfold.
    Never has this simple truth been more evident than through your blog. We are all just blown away by the outpouring of love that you have received through the blog. No medicine can compare to the power we have witnessed with each comment you receive. Love feeds the spirit…which in turn strengthens your body.
    It has been amazing and so wonderful to hear from so many friends, relatives and strangers from different phases of our lives. (To my students: you are the gift that keeps on giving. You continue to teach me and enrich my life) What have been the most amazing to me and totally reinforce my point are the comments you received that say they didn’t know you in school but were touched by something as simple as a smile. How powerful is that! Enough said. Baba nam kevalam.
    I love you beyond comprehension.
     

         

  2. Lori B says:

    Good luck Bret!!!

  3. JLAG says:

    Quite a few hard pills to swallow (literally and figuratively). Sending you guys all my love. Happy New Year, Road Warriors. Send Bourbon St. my regards tonight. =*

  4. Russel says:

    Wishing you the best with you trial, and sending many positive thoughts down from the mountains.

  5. Nanette Hance says:

    With fingers crossed, please know that you also continue to be in my thoughts and prayers. So sorry that I missed you and Shannon when in Pultneyville. Hope to see
    you soon and wish you much success with your trial. With the advent of the new year, think positive … think Spring … and take one day at a time. Your neices and nephews are so lucky to have you in their lives and I am sure they adore you as much as you adore them! Much love to you both as we ring out the old, and ring in the new.
    Nan

  6. Jill St George Forsythe says:

    Brett …Best of luck…you are a very special man.
    Betsy…thanks for the cry… It felt good…I comprehend the love completely…
    there is no comparable love to what I call ‘Mama love”. My kids laugh about that but in time they will understand.

  7. Uncle Kevin & Aunt Judy says:

    Happy New Year to all of you! We’ll be thinking of you all and praying for a 2011 full of miracle drugs! This is one of the few New Year’s Eves that we have not spent with your Mom & Dad, Bret, but we’ll be with you all in our thoughts tonight. Have a toast on Bourbon Street for us. Love you all~
    Love, UK & AJ

  8. Aaron says:

    Wow….. You have a big tongue! 🙂

    Sorry… Gotta Go….. McGurgles….

  9. Debbie says:

    And so it begins!

    Like everything scary and new in our lives, that first plunge into the unknown is the worst because of the associated anxiety of the “what ifs?”. But as you put it–a little discomfort and McGurgles is a small price to pay if it increases your chances of life and success!

    I will say that I’m completely happy that this chemotherapy is in a pill form and you do not have to be hooked up to all sorts of icky needles and machines. Life (even with the possible side affects) will be much easier to handle.

    And let me wish you, Shannon and your entire family a Happy New Year! May 2011 be filled with blessings and miracles and all the love you can possibly handle (and then some!)

    Love you guys soo much!

    Sissy

  10. Tamera Pulver Strzepek says:

    Best wishes Bret! Thinking of you and keeping my fingers crossed!

  11. Shan (Shannon Hoefen) says:

    HAPPY NEW YEAR BRET! I can’t wait to ring in 2011 with you! To family and friends…and a fun time in New Orleans tonight! Smiling from the seat next to you in the airport 😉
    Love,
    Me

  12. Marianne Borrelli says:

    Hey Bret I hope you are on a plane heading south as I write! Your last few posts and responses are soooo much to think about. All good with such positive thoughts and energy heading in your direction.

    Rarely do we step back and take a good look at ourselves and in what direction we are traveling. I thought about my spiritual place. One of them is Maine. There are so many good memories for us up there. I can smell the salty marsh, hear the squawking gulls, and feel the ocean breeze when I close my eyes!!! THe ocean has such power! I love Maine!

    So glad we got to spend some time with you over the Holidays! Always loved seeing you and your family and Carol and her family! You kids have grown up fast. And I’m so happy Katie G. will keep up the Auntie Cuz tradition ! Ok Aaron and Ryan make sure your kids know the auntie Cuz names as well as their dogs or pets!!!!!! Love to all Happy New Year. Crossing my fingers and sending good vibes for a successful 2011
    I’ll be toasting you tonight!!!

    Love auntie Cuz
    Marianne

  13. Cousin Mike says:

    Aaron is right–your tongue IS big. Did Gene Simmons try this therapy? I think they’re missing one of the side effects.
    Ah, the McGurgles… may soft, quilted two-ply always be yours!!!

  14. Michelle, Mario, and Simona says:

    travel safe, lots of love is with you and may toasts being made to you tonight. we love you all!!

  15. Tracey Zimmerman says:

    Happy New Year Bret and Shannon!!! Here’s to a new year of adventures. Thank you for your adventures, your love and the friendship that you share so easily with us and our girls. Sending all of our love and best wishes!

  16. Geof Williams says:

    Happy New Year Bret and Shannon!

    I am hoping its your best year ever.

    I will think of you, and your description of what it was like for you to start your pills, when I ask one of my patients to take a new medication. I will think of you when I have to take my own pills.

    I have been reading along with you over the weeks and want to thank you for taking me along – on your journey. Every day has been an adventure, and everyday has seemed a lifetime!

    All the best to you and your family,

    Geof

  17. Mike Mauro says:

    Bret…

    Here’s to 2011…the continuation of the “Year of Bret” (better known as 2010 to most of us). I’m extremely thrilled to know that you were accepted into the clinical test to help with your condition. You’ll definitely be in our prayers.

    If you’re ever along the coast in CT, send me an email, i’ll give you a tour of the Nautilus!!
    ~Mauro

  18. JoEllen Fahy Schubmehl says:

    Happy New Year! Your mother’s post brought tears to my eyes…thanks again for sharing this journey. We believe the best is yet to come for you!

  19. Amber says:

    I was just talking to a rep at work about Crizotinib the other day. It has some very positive feedback! As soon as all the approvals are done, we will be using it with our patients. Chemo can be scary but listen to your body and lean on your support system. You have an amazing group around you! I love to read about your journey and see your pics!

    God Bless you and your family. Push forward and kick some 2011 ass!

  20. Cousin Mike says:

    1st comment of 2011–wha-hoo!!! DOH!!! I just saw that Amber posted at 12:37am. Darn you people who can stay up past 9pm. Us early risers will have our time… and you slackers who sleep in past 4am won’t be able to stop us.

    You’ve inspired me to make 2011 “my best year, day by day”. I guess before that I wasn’t even trying–wow–maybe I’m the slacker?

  21. Ernie T says:

    Happy New Year Bret and Shannon! I wanted to stop over and see you when you were back in town, but our schedules didn’t mesh. It looks like you were very busy. You’re in my thoughts and prayers, and keep riding in a good direction.

  22. Aunt Bo says:

    I have found it dfficult to respond the last two days. Too much to think about and contemplate and reflect . Thanks Bret, Jim and Betsy. you remind us what our time on this earth is all about! It is a journey for all of us.
    Have a great start to the New Year in New Orleans! What a great and crazy place to be.
    Bret..thanks again for taking all of us on your personal journey..you are helping to make us all better people and to remind us that Today is my best day!
    Love to all of you!!!

  23. Daniel says:

    Happy New Years Bret, I hope 2011 yields hope & promise for you!

  24. Scott says:

    Just wanted to share something with you all that made me feel very proud as a boss during the holidays, I’ve attached the entire e-mail thread so you can see:
    —————————————————————————————————-
    Everyone,

    I would like to share the folllowing with you…and express how proud I am. Below is the response from Turnersville in regards to winning the decorating contest…the micos choose to take the money that would have gone toward their store outing and donate to a fellow mico in the Maple Shade store who is currently battling cancer for the second time around.

    Just goes to show, Christmas Miracles still happen!!!

    Happy New Year,

    Dave

    ——————————————————————————–

    From: Dave Rosenberger – JVP 7027
    Sent: Thursday, December 30, 2010 12:35 PM
    To: Debbie Rovegno
    Cc: Dick Meyer – RVP 9981; Bill Kadow; Jodi Roeske
    Subject: FW: Decorating money-**Christmas Miracle**

    Hi Debbie,

    I’ll try to give you the short version…in an effort to build esprit decor amongst the stores and a holiday atmosphere, we ran a Holiday decorating contest. The winning store would be allowed a mico outing(bowling, movie night, etc) of up to $1200 to be paid for through unit tranfer by the others stores and myself at the cost of $100 each. Needless to say, the contest was a huge suceess. Each store put together mico teams to organize and decorate the restaurant. The restaurants looked phenomenal, we received comments, emails and SMG comments from customers, and the managements teams were very competitive, which helped drive the competition among the stores, and build the feeling of “belonging” to a team.

    In one of the other local stores, Maple Shade, we have a mico who is fighting cancer a second time around. Last year he fought testicular cancer, and he is now fighting colon cancer which is spreading to his other organs. I announced the winner of the contest on Christmas Eve, and below is the reply I got from the winning store, Turnersville. They decided as a team that they would like to forfeit the party, and instead donate the money to the mico in Maple Shade who is battling cancer.

    This was in no way prompted or suggested by any management or myself, it came as a complete surprise, as I wasn’t even aware that the micos in Turnesville knew of the Mico in Maple Shade’s plight!

    Please advise how I can make this happen?

    I thought this would be nice for all to see a positive mico holiday miracle!!

    Hope everyone had a great holiday and Happy New Year!

    Sincerely,

    Dave Rosenberger

    ——————————————————————————–

    From: Carrabbas 3101 – Turnersville, NJ
    Sent: Friday, December 24, 2010 9:52 PM
    To: Dave Rosenberger – JVP 7027
    Subject: Decorating money

    Dave,

    After telling our decorating crew about the money for the party and telling them to start organizing a party, I felt very proud to hear that the staff would like to donate the $1200 to the young man from Maple Shade suffering from terminal cancer. I fully support this and would love to make it happen. Do you have any objections??
    -Scott

    The company did go forward… this young man received a check on New Year’s Eve for $1200. I know it’s not a ton of money, but in some cases, a simple gesture knowing people care can go a long way.

  25. Christie says:

    I understand the apprehension but this will work and it will be worth it!!! If it makes you feel any better I threw up right before my first chemo treatment and the nurse said “Really? We didn’t even give you any thing yet.” To top it off I had to “strut” the walk of shame and wear over sized scrubs home…

  26. Sean Swan-Leuze says:

    Hi Bret,

    I just wanted you to know that My wife and I are very much impressed with your positive attitude. We wish you the best in the up coming year with your battle. Thak you for sharing your story with us. Tell my Brother-in-law Jeff that he is a very lucky man to know such an inspiration. He said your Blog was very interesting….That was an understatement. I have enjoyed the comentary and pictures/videos. Keep Smileing 🙂 Happy New Year!

  27. Pingback: Giving the Journey Heart and Soul | Bret Hoefen – My CCS Story

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