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

Henry David Thoreau

Moving On to O’Leno After Disappointing News

Monday March 16, 2015
O’Leno State Park
High Springs, Florida

 

 

IMG_9623We are up and on the road early this morning to see David’s doctor at the Moffitt Cancer Center.  Our appointment is at 7:45.  Things get messed up somehow and it is nearly 9:00 before he arrives. 

He confirms that this second therapy combination since August is not working after two months and outlines the diminishing alternatives.  He tries to soften the blow that we have to stop traveling and stay in one place so that David can get non oral treatment. He repeatedly says we must now focus on David’s illness and that will not include traveling.  It’s as if he knows this next therapy they have decided on, #5 in the list since David’s diagnosis in January of 2012, is not going to work either.   He talks to us about Clinical Trials using novel therapies not yet approved.   It’s pretty depressing.

 

 

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Back at Quail Run while I am packing up three wood storks fly in.  They are so beautiful flying in but look at those faces.  Interesting but certainly not beautiful.  Still I’m happy to see them knowing that they have been endangered and are making a come back. 

We are pulling out of the site by 11:30 on our way to our previous reservation at O’Leno State Park.  I’ll have to cancel most of the reservations we have after that so that once David has completed the first series in this therapy which requires weekly injections in an oncology clinic rather than oral medications, we can return to Virginia to continue the treatments at the University there and prepare for Carrie’s bridal shower and wedding.  

It doesn’t look like staying in Virginia permanently is really an option since there isn’t the kind of cancer treatment and clinical trials there that would go beyond conventional therapy.   So that’s another big problem to tackle.

It’s a pretty huge set of problems facing us, all overwhelmingly depressing and very very sad.

 

 

IMG_9630We stop for gas at the Exit 285 Pilot/Flying J where we pay $2.369 per gallon.  At O’Leno , after a minimal set up, David begins trying to arrange for the shots at the Gainesville location of the Florida Cancer Specialists.

Dr. David Wright is the one who originally diagnosed the Multiple Myeloma and it is due to his generosity that we are able to move around in most of Florida.  We haven’t thanked him nearly enough for this. 

I should qualify to say David can get treatments at Florida Cancer Specialists other than in the northern part of the state including the Nature Coast, and the Panhandle on the West Coast and North of Orlando on the East Coast or the entire Florida Everglades and Keys. Their clinics are over 100 sometimes 150 miles away from those parts of the state.  This directs that we pretty much have to stay centrally located and near larger cities.

But at least in Florida we don’t have to completely stop traveling to receive treatments.  That is  until the Clinical Trial is the only remaining option which it may well be within 6 months if the remaining treatment possibilities don’t work any better than these past 2.   I’m not sure we can take another year round in Florida.  Doing that in 2012 was very difficult.  So what to do is a real concern.

David’s case of Multiple Myeloma has proved to be extremely resistant to treatment. He’s in the 25% for whom the stem cell transplant resulted in less than a 3 year remission and for whom, so far, none of the tried therapies has worked.  

The question arises, how much of your life do you spend taking powerful drugs just to keep you alive if you can no longer live the life you want to live?

 

 

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After 5 winters in Florida we are getting pretty tired of it and had really hoped to be able to go to the California and Arizona deserts for a change.  But that’s not a possibility now. 

We now have no idea what we can do for this the summer since everything depends on whether the current treatment somehow is so different from the others that it will control the myeloma.   We won’t know that for another month or two.   It’s pretty difficult to travel on the east coast on short notice or if you must have a doctor and a hospital in every place you go.  Emergency rooms and Prompt Care facilities don’t work in this case.

 

 

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But right now we are in O’Leno State Park for two weeks where we are 30 miles from a FCS facility so we still have some time to enjoy before having to head back to Virginia.

We were here previously in 2013 up closer to the front of the Magnolia Campground Loop in site 28.   There are 30 campsites here.

This time our site is # 16 in the back of the Loop.  It appears we have landed here during the all month long Spring Break season that appears to take up all of March and much of April in Florida.   There are many people here for a mid week, many tenters, many children.

 

 

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O’Leno is a lovely park with some beautiful hiking and kayaking possibilities.  We hope to do as many of these as weather and velcade shot and blood draw appointments will allow.

That’s really about all I feel like writing for today.  I’ll post more about the park and what we did with the evening of the first day at O’Leno next time.   I know I’m getting a bit behind here but sometimes it really is the best I can do.

Thank you so much for your comments, each and every one is a bright light in my life.  Not only on the sad posts but on the happy and ordinary posts as well.

53 comments:

  1. I'm so sorry. My thoughts and prayers are with you & David as you make life-changing decisions. A few years ago one of our pastors said, "sometimes life just sucks." This quote has stuck with me over the years, and this seems to be one of those times.

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  2. David seems to be so healthy, active, and interested in everything that it's hard to accept that there is something so drastically wrong. Does he feel worse - I can't remember you saying that he is getting weak or anything like that.

    If it was me I think I would plan a route to Arizona and California to stop in large cities that have facilities for David's shot and blood draw. Of course you have probably looked at the maps to see where these might be, but I think it could be done. I would "make" it done. I guess it's easier said than done though, but quality of life is an issue as well. I would shrivel up quickly if I was stuck in one place for too long, especially if it was for medical reasons. I really hope you can work something out.

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    1. The problem is that this is chemotherapy Gypsy and they are very strict about how it is dispensed. Doctors think they need to "follow you" not just have you drop in. You have to be the patient of an oncologist at that hospital which means filling out all that new patient paperwork stuff, have all your records send and it is a HUGE endeavor. We did it once when we went to Boston at Dana Farber and that was when he only had a to see someone once every 3 months rather than every single week. He is having some fatigue of late. We think it is to his low white and red blood counts but he's not getting any aerobic activity any more which isn't good.

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  3. Oh goodness. . .this is not the report any of us wanted to hear.

    I've been looking forward to catching up with you guys again, now that I feel I've gotten to know you so much better through the blog. . . so many things I would love to pick y'alls brains about. . .and now here we are on complete opposite sides of the country. . .bummer. . .

    Hugs and prayers for a better prognosis. . .

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  4. This is heartbreaking to read of you and David having to go through this, Sherry. My heart really goes out to you both. I think your question, "how much of your life do you spend taking powerful drugs just to keep you alive if you can no longer live the life you want to live?" is a very poignant one. I would like to think I would choose quality over quantity, but we never know until we are staring that decision down.

    Have you thought about the Atlanta area? There are some beautiful campgrounds up at higher elevation in the Georgia mountains that are only 90 minutes from the city. Much cooler in the summer, and Emory is there. Good hiking, lovely forests, etc. Just a thought...

    Sending lots of thoughts of ease and strength your way,
    Suzanne

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  5. Oh Sherry, what to say that everyone else won't. I feel terrible about this news and hope David pulls through. Quality of life is very important and although I don't know what decision I'd make under these same circumstances I hope you can keep following your dream, wherever that may take you. Sending positive energy your way. Big Hugs.

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  6. It is hard as his daughter to know what to say - this is worse than I thought it was and makes me very sad; I wish there was something I could do and some way I could help. It just seems so unfair and frustrating; he does not deserve this and neither do you. I love you and I hope life will find a way to make this better somehow so you can keep enjoying your freedom. My heart hurts hearing this. Looks like a nice campground where you are now - I definitely enjoy the blog - each and every entry.

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  7. Oh Sherry and David-sorry to hear this news. Have you thought about a second opinion in Arizona or California? Maybe the treatments could be done there while short trips still occur.

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  8. So sad to hear this news... I am thinking of you always... Sending prayers and positive thoughts hoping that the Non-oral treatment proves effective. Thank you for keeping us up to date on Uncle Dave's therapy.

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  9. I know that is very difficult news to hear. I have been so impressed with how you both have dealt with this disease in the past. I cannot imagine how distressing this new development is. We will keep you both in our thoughts and prayers.

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  10. definitely not the news you two wanted to hear... at least you have the wedding to keep you motivated... stay strong!

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  11. You are in my thoughts and prayers.

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  12. What horrible news you've both had to endure. I am so, so sorry for everything that has happened! We think of you both daily. Wishing you only the best...~g

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  13. So sorry to hear this news. Praying that this treatment works miracles for Dave. You have so many memories in your blogs and pictures. Maybe now you'll have time to review them. Sometimes life just sucks!

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  14. I was really hoping against hope that you would get better news than that, I am so very sorry. I hope that you can find a place where David can get what he needs and you can be in a comfortable place that you like rather than sweltering in Florida. Sending hugs- OOOXXX

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  15. This is heartbreaking news, there are no words to make it any easier to take. Things are bleak, but even though there are bad reports on treatments, there are still some alternatives left. You both are fighters and have not let this terrible disease be the obstacle to keep you from enjoying each and every day.

    Keep on making the most of every day together and never stop doing what you love the most, being out in nature. We will never stop our thoughts and prayers for you both.

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  16. Such an ugly bird. The campsite looks like a good one, even with the seemingly unending spring break. And damn, damn, damn that friggin' cancer. Trying to think of something brilliant that would fix it or make it better or keep you traveling and I know you have thought of all of it and more. Time and more information will provide options and hopefully good news. I'll be disappointed tomorrow, tonight I'm just pissed off.

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    1. I too have walked the cancer road and I really like your last sentence. Sums up the whole situation very well!

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  17. I am so sorry that the news is not what you were hoping for. You both have way to much experience with making compromises and adapting to the challenges before you. I so admire your dedication to defining your own way of life even with the confines of battling David's medical issues. I know that you will find your own way to do this. I know that you are looking forward to the wedding and all the preparations and all the special moments that you will be sharing with Carrie. Blessing to you all and stay strong!!

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  18. Oh, dear, Sherry and David, such sad, sad news... thinking good thoughts and sending prayers and hope your way. I just know you will make the best of all plans, things will be ok... you have a great wedding to look forward to and plan for. Take Care and God Bless
    I am glad in some small way to be a part of your journey...

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  19. Words fail, Sherry. Yet with all the sad news there must be some peace for David knowing his beautiful daughter will have a good husband to love her. And the Virginia mountains and your farm must also have some healing memories. In tthe midst of the awful stuff, I hope you both can find the beauty and peace of knowing you have lived such a wondrous life and been an incredible example to so many people these last few years. So difficult, and so not fair. Sending many hugs your way

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  20. Sherry and David, I wish I could say something to you both that would make this news easier to bear and to plan around. I wish there was something I could say or do to make it go away. You both know my history and where my words are coming from . .. Everyone has to make the choice of treatment or quality of life on their own; it is a strictly personal choice. My hope for you both at this time is that you can figure out a way and location that will be easy for medical issues and be as comfortable as possible for everyday living. I also hope and know that the two of you will live, laugh and love every precious moment . . . as you always do. I have to say that part of my being agreeable to return to Texas is . . . well, "just in case" as that is where our support system is with friends and family. Please keep us updated as you can; there are so many of us out here who care about you both. I continue to keep you both in heart, thought and prayer, as always.

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  21. Sherry and David, we are so deeply saddened to hear this news. Know that you are in our thoughts, and that if there is any way at all that we can help, we're here for you. (I'm casting my vote with those who suggest perhaps trying to spend extended time where you would like to be—Arizona? California? Oregon?—and arranging for medical care there. But of course, you guys are the ones living this challenge, and you know what will work best for you.) Wishing you many moments of peaceful communing with nature in your two weeks at O'Leno SP. Hope you can get out on the beautiful Ochlockonee River!

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  22. I am so sorry. I understand your depression and disappointment and so wish something would work for David. Who knows, maybe one of the experimental treatments will fill the need. Please know that John and I remain steadfast in our prayers for David and for you. Many of us out here are praying for you. Hold on and remain strong. Hugs....

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  23. I've been enjoying your blog for quite some now and look forward to each post - except for this one. It's strange how you can get to know someone without having ever met them. You both seem like very sweet people. David is fortunate to have you by his side as you both travel this scary, uncharted territory. I wish you both all the best.

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  24. Sorry to hear this news. Wishing David the best and for you too

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  25. I dreaded the day that this would be in your blog. The decisions you must make are not easy ones. Our thoughts and prayers are with you both.

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  26. I'm so sorry to hear this news. You are in my thoughts and prayers.

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  27. Goodness, I'm so very sorry to hear this. I wish I had something incredibly enlightening to say, but I'm stumped. You are facing difficult decisions, and painful news. I know it will be hard. I hope you can find moments of beauty and love between it all, and I'll be rooting for that new treatment to work. Best of thoughts to you both. You will definitely be in mine.
    Nina

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  28. So sorry to read your news. Thoughts and Prayers go out to both of you.

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  29. So sorry to hear that the day has come when some very difficult decisions are ahead for you. May you do so knowing that you have the love and support of so many here in the blog world.

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  30. We are so sorry and sad to read this post. Our hearts are aching and we wish there was a way for us to help. You remind us that we need to enjoy each day and take them one day at a time!!! If there is ANYTHING we can do...just ask!!

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  31. Tough news- you are both in our thoughts. One day at a time!

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  32. Oh, no. So sad to read this. I can only repeat what others have already stated, take one day at a time.

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  33. We were both so sorry to hear this devastating news. I hope you can find a way to continue to at least do a little traveling while David is on the new treatments. I completely understand not wanting to spend the summer in Florida. You have some difficult decisions to make and I hope you find a way to be where you want to be. I hope you enjoy your stay at O'Leno and your trip back to Virginia for Carries wedding. A little Carrie time might make you both feel better.

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  34. Our prayers are with you two - know you will find the right place for David's treatment.

    arlonHboozer.com

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  35. We are dismayed to hear this most distressing development. What a difficult and depressing time for you. You are in our hearts, thoughts and prayers. It's amazing and a wonderful testament to all your dictors and you and David that you have been able to travel as long as you have. I'd not have the courage to keep battling, would say the hell with it and head out for one last trip. You both are amazing and we admire you both very much.

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  36. Read your blog last night... and had to let it sink in a little more. David Is my hero in how he has not spent his time dwelling on his serious illness but rather moved on with life and has tried to enjoy all the moments we so often take for granted, large and small. You are my hero in that you have planned and researched the travels and found ways to enjoy the little things in life that so many of us gloss over. I know that neither of you will give up without a fight after receiving this discouraging news. Certainly hoping you can both find ways to continue your travels, albeit a little more limited, and explore new places. So hoping that this new therapy is THE one that proves to hold the multiple myeloma at bay for a longer period. So many people out there are praying and/or sending positive energy to you both... and fighting alongside you in spirit, as you know we are. Sending thoughts for strength and vision, so that you can plan your lives around the things you enjoy the most, and the people who make your lives brighter. I know that Carrie's upcoming wedding will be a joyful event that will bring a smile to both yours and David's faces.

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  37. I am so sorry to hear this news. Wishing you both the strength to deal with this new blow.

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  38. My heart is heavy.....you two stand together like 2 giant trees and all of us will wrap our arms around the two of you and give you all a big, big hug. Having a motorhome will allow you to go to the medical facility of your choosing. I know in Little Rock we were staying at a COE and they had around six RV sites 'just' for University of Arkansas Medical Science patients....I am certain other facilities have like agreements with RV parks. All of our thoughts, prayers and hopes are with you both, and with all the rest of your family. --Dave (GoingRvWay.com)

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  39. Sherry and David, I am so sorry to read your news this morning. I do know what you are going through at this point with your decisions. There are some amazing trials out there for so many different forms of cancer but finding them can be quite the challenge. I know you mentioned in a comment above about the work to change facilities but have you looked at MD Anderson in Texas? We found it a little too late but they seem to have so many experts in various fields of cancers and are doing so many trials. I am sure you have thought of everything but where are leading experts working for this type of cancer? With David being in the minority of those responding to treatment, I would think he would be a prime candidate for a trail if the remaining treatment regiments don't work. Yes, life on the road is wonderful but giving David some true quality with a new treatment would be wonderful too. You didn't mention how David is handling this news. I hope he can continue to keep his spirits up and think positively and keep looking forward even when the light dims a little. I'll keep you two in my thoughts and prayers:)

    On a lighter note...that wood stork is a weird kind of pretty. Just don't look at the head...haha! Our first intro to this bird was in the Everglades and my husband said it looked like he had the wrong head on. We had to ask at the VC what it was.

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  40. I know there is nothing anyone can say to make things better for you both. We dread the day health issues will force us off the road so we know what you must be struggling with. Hope you can keep up your positive attitudes and enjoy life in between the treatments.

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  41. Such very sad news. I hope you know that both of you are in my thoughts.

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  42. Reading this breaks my heart. It is certainly a year of challenges. You both have a a lot of love and support from so many.

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  43. So sorry to hear this, my thoughts are with you guys.

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  44. s o ver y saddened to hearof Davids setback just breaks my heart wherever you are I'm sending prayers of healing and health thank you for keeping us posted l know how hard that must be blessings to you and David and carrie

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  45. I'm praying for your health and wisdom every day. Is there anything here that needs to be done with which I can help? Please email me and let me help. Love and a hug to you both.

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  46. I feel very lame now hearing the sad news.What Im going thru is nothing compared to all the challenges ahead of you Sherry and David.
    Hang in there, answers won't come fast and easy and when they do, it will take you to where you wanna be.
    Sending you comforting thoughts and and prayers.

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  47. Sad news. Sorry to hear it. Seems like you guys just keep traveling along, hiking, kayaking and everything seems fine, but I guess this has been in the background. Lot of hard decisions. You just do what you have to day to day and keep smiling and enjoying life. Looking forward to seeing you for Carrie' events. Sending our love. Ted and Lynne

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  48. Dear David and Sherry (and Carrie), I am so, so sorry. I hope you will still be able to continue hugging big trees for a lot longer, soaking in all the unconditional love, strength and solace they offer. Love, Laurie

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  49. David and Sherry, we're so sorry to hear this news. It's easy for us to forget how sick David is because from all outward appearances he looks just fine. We continue to be inspired by the energy you two exhibit, the zest for life that you each have, and your determination thus far in dealing with all the struggles presented for you to remain on the road. You continue to be in our thoughts and prayers as you face yet one more hill to climb. Hugs to you both.

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  50. Sherry and David, I am so sorry to hear this news. You are in our thoughts and prayers. If anyone can make the best of this you will.

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