Wednesday, May 25, 2011

Recovery, Moving Forward, Tentative Plans

Recovery seems to come naturally for me.  Today is about six days after surgery and I feel okay as far as surgical pains are concerned.  I still have the same abdominal bloating, numbness below my sternum and sciatica-like pains.  Additionally bowel and bladder control has now almost all been lost and I've been spending a lot time between bed and bath; however, my surgery seemed to go well.

I still have this cancer eating through my body but hopefully the surgery has prevented impending paralysis that was slowly creeping up my back.  The incontinence issue has been annoying to say the least, requiring me to self catheterize myself every 8 hours to relieve my bladder and playing this weird guessing game regarding my bowels.  I'm not really sure what to think or feel anymore, and it's not like I have much feeling anyway.

Over the past couple of days we have had nice meetings with the entire, multifaceted oncology team and everyone has come to the consensus of prolonging the quality of my life instead of introducing more harm to finding a cure.  The prognosis of my disease has been described in weeks to months, which doesn't really mean anything other than I don't have the luxury of years and decades.

The idea of not fighting and completely suspending treatments doesn't really jive with my goals and we have decided to switch to one last oral chemotherapy regimen.  This particular drug is called Pazopanib.  Unlike traditional chemotherapies, this drug does not kill cells unbiased but targets tumor pathways to control the disease.  It's a Hail-Mary approach with little stats to rationalize; however the side effects are minimal and the treatment allows me to be "unteathered" to the hospital.  It was described to us as an "aspirin" that'll either work and make me feel great or not work and we'll discontinue.

As a result my family is planning a fun trip to be together and enjoy these remaining days.  The tentative plan is an RV trip up the coast of California from San Diego to San Francisco and then flying to Dallas and spending some time there.

15 comments:

  1. Jeff you are such an amazing person. The courage and strength you have shown this past year has revealed to all of us the immense measure of your character. Just writing these words down, and letting us all into your thoughts in this way, takes a certain chutzpah that not many in your position would be able to muster.

    Thinking of you always. I will see you soon.

    Love,
    Zac

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  2. what amazing strength you have! You are in scott and my prayers each and every day. I wear your bracelet on my ankle and say a prayer each time I see it. Enjoy your trip and we wish you well.
    amie and scott medeiros

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  3. I've never known anyone with your character and strength, Jeff. I think you must know that I love you and always wish the best for you, however that best translates. You are amazing in so many ways -- your many talents including writing and bringing the reader with you through the struggles and the ups and downs. But we aren't just "readers". We love you and are with you in spirit and hope.

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  4. Jeff,

    You may not remember me but we have a lot of mutual friends in Dallas. I have been following your blog for the past month. Your courage and strength is truly inspiring, not to mention your ability to make me laugh. My thoughts and prayers are with you.

    Carly Kaufman

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  5. Jeff, you are an inspiration! Your fighting spirit is amazing! Know that you are in our prayers every single night. We have faithfully followed your blog and hope with all our being that the Pazopanib will work miracles -- because you deserve one! We had hoped to see y'all this summer in Boston, but it seems like you may be elsewhere. Your courage, as well as Autumn's, has made us proud to call you family!
    Much love -- always,
    Your Sarasota Fan Club

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  6. Amazed by all of you prayers and good thoughts.

    Peggy Bill Adam

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  7. Jeff, you are teaching us all lessons about life, death, the future (what it is and what it is not), love, humor, friendships, connections, struggle, being in the moment even if there seem to be not so many moments left. Whatever the future holds for you (and you are giving us a glimpse of that) you are going to always be with us. I hope that gives you some comfort to know how much you are loved.
    Julie B

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  8. Sharon Shuster GoldbergMay 29, 2011 at 7:40 AM

    Jeff, we all love you so much. I hope that you know that. I second everything that's been said about your character, humor, grace and fight. You are amazing and I think about you always. Sending lots of love and prayers your way.

    Sharon Shuster Goldberg

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  9. Dear Mr. Jeff,

    You are indeed an inspiration to all. We love you and have such admiration for you.

    Let's have faith in that little miracle "aspirin" and in you!!!

    Love you and pray for you always!

    Lina

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  10. Jeffrey,

    I found out about what is going on with you and your blog site from Kelly and Kristina.

    I just wanted to say, I am sending much love and prayers to you, your wife and your family.

    Life certainly seems unfair sometimes.

    You have taught all of us about grace and humility and love through this difficult journey that you have been forced to endure.

    I admire your resolve to make the best of every day, every hour, every minute you are given.

    You are an inspiration to me and my family and I hope I can remember to act accordingly when my time to face difficulty arises ~ especially with humor...I love your unending sense of humor!

    I will keep you and your family in my prayers.

    With love and respect,
    Mary Ferguson (previously
    Mary Hodgson)

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  11. Jeffrey...

    Your courage is inspiring. Stay strong.

    Isi

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  12. Dear Jeff,
    You are in my thoughts every day. Your strength of character is an inspiration, my prayers are with you always.
    Sending love,
    Ann Heft

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  13. Jeff,
    I have been thinking of you every day during this fight. Everything written above is so true and I just can't repeat how much I admire your strength, humor and grace. You are in my thoughts and prayers always.
    Rachel

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  14. Ann Goldenberg AltmanMay 31, 2011 at 10:04 PM

    Jeff, you are a brave man. You are in my thoughts and prayers every day. I hope you find lots of warmth and sunshine in California.

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  15. You have touched many souls, and lifted our spirits! Jeff Guyer you have made a significant change in this world. You have inspired many Jeff you are amazing!

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