Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

Turning Back

Friday August 29, 2014
Fruita Campground
Capitol Reef National Park

 

Those of you who have followed this blog for a while know that David has medical tests every month while we are on the road. The last ones were in Estes Park Colorado while we were in Rocky Mountain National Park. We got the results of his routine blood tests back about a week after the blood was taken. Things had been looking pretty good in that department the month before with nearly everything normal. This time things were totally different. Everything was either too low or too high. Such a quick change worried me.

But the real information comes from a test called M-Spike which specifically measures his myeloma disease status. He has this expensive test every other month.  M-Spike should be zero, which it was shortly after his stem cell transplant and for nearly a year.

According to the “averages”, he should have gotten 3 years of remission. But after a year his myeloma came back. His M-spike was at .5 so his doctor changed his therapy slightly and the M-Spike went down to .35.  However the next test showed his M-Spike had nearly doubled to .6 and this most recent one shows it has nearly doubled again and is now 1.1. This means the myeloma is active and if it keeps doubling at this rate, David could be back near the very high 5.3 of his diagnosis.

This is why we drove 40 miles for internet yesterday. (blog post link here)  We had to see what his doctor had responded to the news of these tests and now we know. We will stay a few more days here in Capitol Reef and then head back.

His doctor has advised that he come back immediately and have more thorough tests run so they can change his therapy. It is looking now like the most likely new therapy will not allow him to travel as he will have to get weekly shots in a specific doctor’s office.  We may still be able to go to Florida for the winter as the Florida Cancer Specialists have clinics throughout the state.  But summer travels………………probably not.

We are devastated by this news and by having to cut our time in Capitol Reef from 10 days to 5 and head back earlier than our intended November date.

We are still hoping for some other oral therapy or some way we can continue traveling. We are very very grateful that David does not feel badly at all.  If we didn’t know he had this disease we would have no idea he was sick.

Not much more to say except that we are trying to enjoy the days we have on our trip back not knowing at all what the next months will bring. 

Life is precious and very short!  Do not put off, for any reason, doing what you most want to do.

67 comments:

  1. Sherry, I can't even say anything. I will be praying that a therapy is found to enable you to travel summers. I have so many prayers right now but you will be in the top tier. Safe journey back east.

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  2. So sad to hear. I'm hoping there will be something he can do so you can keep on truckin' I'll be thinking of you both.

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  3. Hated to read this about David health issue.
    You did have some great travels this summer and with lots of prayers and good medical Dr. you could be traveling again next summer. I will send healing prayers your way.

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  4. So sorry to hear this. Hope you can return soon.

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  5. hugs and prayers. . .wishing you all the best!

    I have been amazed at how active David is, knowing how serious his health concerns were. . .but it's best to be where things can get taken care of. . .right?

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  6. Oh, Sherry, that is such disheartening news for David and you. I hope his new tests reveal he can be treated with the least stressful therapy and that you can continue your travels. Take care.

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  7. Both of you are in my prayers too. Praying for an oral medication which will enable you to enjoy more time on the road.

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  8. I am very glad they have options for me, especially in the shadow of hearing that an old friend just got the word from his doctors that they had nothing else to offer him. I am not looking forward to that day. Till then I will continue to make the most of each day and appreciate it. Guess that is all anyone can do.

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    1. love your attitude. . .that's half the battle. . .doing what needs to be done is another big part.. .keep pressing forward!

      All the best to you and Sherry. . .

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  9. This makes me so sad. But, B U T ..... we both know that miracles do happen. This is a temporary setback, a new learning curve that John and I will pray you through. Two steps forward and one back, but you are still one step ahead. Take a deep breath and trust that God loves you two and wants only the best for your lives. Hugs.

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  10. Oh, Sherry and David...there just are no words, just love and hugs to both of you as you continue this difficult journey. Whether on the road or settled into Florida, I know you will find things that give you delight and joy. David is good at that, and Sherry you are a rock. May your life be filled with good news, a new wonderful therapy, great breakfasts, and ice cream.

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  11. Our mantra is: "Another glorious day for us to enjoy to the fullest." We hug and say that every morning to start the day. No matter who you are, or what challenges you may encounter, today is all there is. Bonus if there is a tomorrow !!! But then that "tomorrow" is "today" all over again! ;-> WIN-WIN!

    Virtual hugs,


    Judie

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  12. Goodness, that is tough news indeed. We'll be thinking of you both and crossing our fingers and paws that there is an alternative therapy. You've always lived everything to the fullest in your blog and have no doubt you'll both continue to do so.
    Nina

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  13. Wow. I'm so sorry about this latest news, but glad that David feels well and that you got to do what you wanted to do until now. At least you can go to Florida for the winter--I know how the two of you love the water. Anyone reading your blog has learned to live every moment--you've given a gift to so many. I know you and David will fight this just as you've always fought it and we'll be reading, again, about the bison, the elk, and the moose on the trails that await you. You are in my thoughts, as always.

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  14. Darn. I saw this title and hoped it was about turning back on a trail. My heart is heavy for you both but you have shown enormous courage and faith in the past when faced with more dire test results. On the positive side, fall is a good time to start heading to Florida and I know you will find awesome discoveries on your journey eastward. Sending healing energy your way.

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  15. Oh, I didn't like the title of this post when I saw it. Sending prayers for healing, strength and courage.

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  16. This is sad news indeed, but you both are strong and will do what you have to do to get through this new challenge. Thankfully there is the ability to adjust David's therapy to continue to fight on and move forward.

    Remember doctors always give you the worst case scenario to protect themselves from liability. David is strong, of positive mind and determined to get the most out of every day. We'll hope and pray that the adjustments for David will work well and you can continue to travel and enjoy nature's finest.

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  17. Words fail me in this moment. I am so sorry to hear of this news. Your courage and focus on living every moment as fully as possible has been an inspiration to me as life turned about for me.' I pray for you continued courage, daily joy and treatments restoring health. Know that you are in my thoughts and I send hugs to you all. Karen

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  18. Well that sucks! Life is not fair sometimes. Glad that you've been making the best of it. Good luck to you both.

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  19. Very sorry for the set-back....will be keeping you both in our thoughts and prayers. If you go back to Florida for winter, perhaps we can get together there...we are not far from the Tampa Cancer center. Safe travels, and our hopes are that the doctors can get everything back in order. --Dave (GoingRvWay.com)

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  20. You said it beautifully, Sherry—Life is precious, and we cannot put off what we most want to do. Thank you both for being such an inspiration in living life to the fullest and enjoying every moment. We wish you the best in the coming days, and we look forward to continuing to travel vicariously with you, wherever you may be. Laurel & Eric

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  21. Sorry to hear this, but it is more important to take care of yourself than it is to travel.You folks are very up beat people and I am sure that you will do your best.Don't focus on what you can't do ,focus on what you have been able to do. Good luck with the future.
    Vinny

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  22. Yes, Life is Precious and you two continue to show us how to make the most of everyday!! We hate that you have to fight another fight. However, I know your journey has been an inspiration to many. You will be in our hearts and prayers.

    Safe Travels...

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  23. Not happy news for us three; so tough. I am keeping hopeful that UVA & Moffitt as a team can help make travel continue to be possible for you both in the summer. I am glad to hear dad still feels well. That is something. See you in VA. Love you today and everyday.

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  24. So sorry to read this. Take care of yourselves and try to mitigate the stress.

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  25. I am so terribly sorry for all of you. You are all in my thoughts and I will see you when you return to Virginia. Much love.

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  26. Sorry to hear this. Travel safely back home. Fingers crossed that they can work out a therapy which allows David to travel.

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  27. My heart is saddened...always hopeful Sherry that David will have good labs and healing contines. Cyberhugs and prayers going up that the docs fix him back up for road travel and keeping you out and about on all those amazing trails! Xo

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  28. Saddened by your news Sherry. We hope you & David have safe travels back to Florida. We will keep you both in our thoughts & in our prayers.

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  29. I am so sorry to hear of this latest development. You have had devastating news before and thought you wouldn't be able to travel, so perhaps the doctors will be able to treat David in such a way that will allow you to travel. I hope David will continue to feel well and that you will be able to continue your travels. I don't know anyone who enjoys it more than you two. Are you heading back to Tampa, or will his treatment be in Virginia?

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  30. Heavy, heavy hearts here in Frederick, Maryland. Follow both of you with joy as you travel and see so many beaurtiful parts of America. We are thankful that David has felt well during these journeys and has hiked and climbed and enjoyed it all. I know this news is a very heavy burden to bear. Thankful that there are two of you to deal with it together. I guess we are all fortunate to live in America where there is excellent medical treatment and hope for these difficult battles. Be strong and courageous and never forget how many of us are out there hoping and praying for strength and another turnaround in this difficult battle.

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  31. So sorry to hear this news. You two are a continued inspiration to us. You all wil be in our thoughts and prayers as you enter this next journey. Claudia

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  32. Words just aren't there--safe travels and know that we are thinking of you both.

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  33. I'm praying for you every day. Love to you both, Pam

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  34. Well s**t! I've not wanted to read your post after seeing your comment to Nina :-( . But of course I did, and took a little walk, and maybe stomped my feet just a tiny bit......
    I want David to be as healthy as he feels, and you to be free of that fear that is gripping your heart. I want Carrie to focus on the wedding. I want the doctors to be bold and inspired. I want this to be nothing more than a change in treatment while you both continue to enjoy your travels for a long, long time.
    So that's what I see and what I celebrate. All the prayers, and good thoughts, and healing energy - all the love of your family and friends and this little community - powerful stuff.

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  35. There was a reason for you to gather strength on your lone hike the other day. My thoughts are with both of you. Let me know if there is anything at all that I can do.

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  36. Oh crap! I hate cancer!!! I wish the three of you peace as you continue forward!

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  37. I keep struggling for words - but there are none. Just sadness that this struggle is back to the forefront once again. I will keep hoping and praying for a breakthrough in treatment and/or and effective treatment for David in the near term.

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  38. Our thoughts and prayers go out to both of you as you both face this next challenge together.

    It's about time.

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  39. That is some disturbing news. I am glad you got to experience some of the West you so desired to explore this summer before having to turn back. Wishing you both patience and perseverance as you deal with this challenge.

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  40. Not a setback that you want to be dealing with, for sure. I hope the doctors can get things sorted.

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  41. Oh, that is not what I was expecting to read on your blog this morning! I am so sorry to hear this. Both of us send David our best and hope that there is another therapy to help him win this battle.
    I'm assuming you may already be back (from your blog date)?
    Stay positive and fight like hell!

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  42. Hi Sherry and David,

    I recently found your blog and started following. I have enjoyed your beautiful walks and travels. I’m sorry to hear that David has myeloma. My father, age 89, has multiple myeloma. He talks of his M-spikes. Right now he is going through the treatment of shots. This week was his 4th week. He gets one shot a week in his stomach. This is done in the oncology department of the hospital. He is scheduled for another round of 4 shots, but he has one week off. His doctor will review his lab work before starting the next round. He has no side effects from the treatment and has done very well with no complaints. I’ll be praying that David’s treatment goes smoothly and that the two of you will be back on the road soon. Blessings and safe travels.

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  43. I am so sorry to hear this, but you and David will no doubt do what you think is best for David. I've been amazed at how active David has been throughout these travels, and how well he seems to be. It's a heckuva thing, isn't it.

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  44. Stay strong in your conviction to joy, my friend. Numbers are just "human opinion." The fact that David FEELS GOOD is what matters. Try to stay focused on that rather than numbers. You are both in my thoughts.

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  45. Oh, this news must have been so devastating. You said it best in your last sentence. Don't put off doing what you most want to do. You are both an inspiration
    Gayle

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  46. Read all the comments and ditto all of them. So will just say " Thanks for your blog, and look forward to many more entries. Till then prayers and positive vibes going out to both of you. S Wetzel

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  47. I am so sorry about David's set back, I will be praying for a remission for David and strength for you. Think those positive thoughts.

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  48. Safe travels. Prayers and positive thoughts for both of you.

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  49. I just don't know what to say and others have already spoken the words we all feel. The unknown is so very difficult. You shared your hearts with us as we struggle. We will do the same for you. Be safe in your travels and stay hopeful! Where would any of us be without hope?

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  50. Sorry that the results were so disappointing. We will continue to keep you in our thoughts and prayers as you deal with this next round of treatment.

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  51. So very sorry to read about David's test results. I hope the doctor can work out a successful treatment plan. A short time staying put will, hopefully, reward you two with many years of travel still to come:) Keeping you and Davis in out prayers.

    You are so right about not waiting to move forward with your plans. This is the reason we (I) retired early. You never know what tomorrow has in store for us.

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  52. Thinking of you both and praying that the Docs will come up with just the right booster treatment ..... So grateful that your summer has been SPECIAL...... Thank goodness for each day of sunshine, peace and fun ..... Sure wish David could have a bunch of treats from Small Batch Bakery just to enjoy his favs

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  53. Oh gosh, that just isn't fair. I am so sorry about this! I am so happy that you have been able to see as much as you have seen and hope you enjoy your last few days at Capitol Reef before heading back. Keep positive. Thinking of you both.

    www.travelwithkevinandruth.com

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  54. Enjoy your remaining days at Capital Reef; safe travels back to Florida. I'm so sorry you have to walk this trail. Maintain your positive attitude & thank you for your last two sentences. You're absolutely right. Take good care.

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  55. Here's praying that next summer/fall you can finish Capital Reef…
    Box Canyon Mark

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  56. I'm so sorry to hear that you have to head back so soon, but health is by far the most important thing. Hopefully you will find a treatment that will enable you to go to spend the Winter in Florida...Never give up on your dreams....They are making great strides in the medical miracles these days..Hugs to you and yours.

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  57. Sherry, you just said the best last sentence in your blog… "Life is precious and very short! Do not put off, for any reason, doing what you most want to do." I do believe you and David are living that mantra following the direction of your dreams.
    Praying for strength and continued optimism as you face this new challenge. This too will pass.

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  58. Oh Sherry, we're so sorry to hear of this latest setback. We'll be praying for you both as you gather strength to fight yet another fight and sincerely hope that an alternative treatment will be found to allow you to continue your travels. You both are such an inspiration in how to live each day to the fullest.

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  59. This news is crummy indeed. Hopefully the doctors will have some options to pull out of their hats as far as treatment that will put David back into remission with few or no side effects and allow you guys to keep on traveling. I'll be thinking of you- xxxooo
    Pam

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  60. So sorry to hear this news and David's setback. Enjoy the remaining time of your trip, you both will be in our thoughts and prayers.

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  61. So sorry to hear that David's numbers are back up again. You're right about making the most of every day ... you just don't know what life is going to throw at you from one minute to the next.

    (Sorry for not being very active reading the blog ... you are not the only one I have been neglecting ... I just have no clue where the days go at such speed.)

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