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

Henry David Thoreau

How it feels

Saturday November 3, 2012
Salt Springs National Recreation Area
Site 81

 

 

  *This post is directly related to the previous one Update on David.  If you have not read that one, this one might make more sense if you read that one first.  You can use the link above or this one.

 

This has been the year from hell for us and it’s not over.  I am exhausted from it.  The out of the blue diagnosis of a terminal illness in a man who looked to be in perfect health and was extremely active, the horrible treatments, the scary stem cell transplant, the hospital of horrors in Pennsylvania, the cleaning out of my father’s house, his financial mess which came at the worst possible time and that I’ve hardly even begun to straighten out and now the death knell for the dream.

It all seems like too much and so unfair. We retired early and took the financial risks only to find that now we can’t do any of the things we wanted to do.  We can’t spend the summer in New England and the Maritimes or in Washington and Oregon or in Alaska.  We can’t return to Yellowstone or go back to Glacier and do the things cut short by my broken ankle in 2011.

Yes we can travel around in Florida during the winter.  We left Virginia precisely because the summers are so hot and humid.  It isn’t a place you can do much of anything outside unless you are at the beach which is 3 hours from his doctor.  

Someone commented about yesterday’s update that it could be worse, we could be in North Dakota or Oklahoma.  But obviously we wouldn’t be in North Dakota or Oklahoma for any kind of treatment for this disease.  I know you all are just trying to make us feel better but sometimes that makes folks feel unheard.  Try instead imagining yourself in the position of being on the road full time and having done everything to make that happen and then being told, sorry you can’t go more than one week’s drive away from your former home and you can only stay 2 weeks and then you have to come back.   Would you still full time??

What is the point of full timing?  For us and I thought most folks, the whole point is the FREEDOM to go everywhere and anywhere you want on your own schedule.  As slowly or quickly as YOU want. 

David is feeling stronger and stronger.  I believe he will be physically able to travel and to possibly do most of the things he did before at least for a couple of years.  But time is truly running out.  That’s not just a philosophical statement.

It isn’t that his treatments aren’t available from most hematologists all around the country.  It’s that we have a system that is based on money and not on care and we can’t afford to pay a different hematologist every month for an initial visit.  No doctor will see you without one and no insurance company will pay for multiples.

Yes I’m feeling pretty sorry for us but things are looking pretty darn bleak in terms of our dream.  There is no comment anyone can really make on all of this except to say they are sorry about it.  I don’t mean to be crabby.  I know you are all sorry and your concern for us over all this time has been unbelievable.  But there’s not much cheer in this. 

I’ve been struggling through the last few days about whether to put this on the blog.  But it is honestly how I feel.  I’m broken hearted.  They told us we’d get our life back at least for a while but after all we’ve been through, we won’t.  After all he’s been through, he won’t.   David won’t, it appears, ever get back the life he retired early to have.

32 comments:

  1. I know you said the most we can say is I'm sorry, and I truly am sorry.

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  2. The crushing disappointment of letting go of a dream comes through loud and clear in your post, Sherry. It always breaks my heart to read/hear of people facing this situation - years of planning and working towards a goal that they will not be able to realize due to a major life change. And it is all the worse to face when you are exhausted and beaten down by the year from hell. Thanks for sharing with us. I hope that a more appealing Plan B will materialize for you after you grieve for the loss of Plan A. Meanwhile, please keep sharing your truth with us, so we can respond to your reality.

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  3. I also am sorry but glad you are using your blog to vent. It is important for you to express all you are feeling. You are right there is no perfect answer. Things have permanently changed. You can still dream but the directions are going to change. Let those changes comes bit by bit.

    Hugs!

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  4. Ok ...deep breaths here...I didn't comment on the other blog when I found it this morning, because what can be said that will make you feel any better..absolutely nothing :( and yes your feeling sorry for yourself right now..and you have every single right to do so...I would feel the same way..so allow yourself the time for a good pity party..you both have earned it!!!! This totally SUCKS...we HEAR you..and your dads mess is just icing on the cake...more on your plate to deal with...but all is not lost dear..personally I would still full time..even if it was just around Florida...don't make any hasty decisions until you feel better..knowing you and the massive strength that you have (both of you)..I'm sure when your head is a bit clearer you will come up a plan B...and make the best decisions for you both...we are heartbroken for you..I don't understand why there isn't a network of haematologists in place..so each one can refer you to the next one without initial consults...can't they let you take result reports from each one to the next?? I know I'm grasping at straws here..just trying to help you find or work toward a solution...not fair not fair not fair....you are in our thoughts and prayers like you wouldn't believe...please keep updating....hang in there honey..wish there was something we out here in blog land could do to wave a magic wand and make this all better...your extensive blogging family cares ...I'm sure I can speak for everyone...we all hold you both in our hearts and prayers for some bright light in all of this....

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  5. Ok ...deep breaths here...I didn't comment on the other blog when I found it this morning, because what can be said that will make you feel any better..absolutely nothing :( and yes your feeling sorry for yourself right now..and you have every single right to do so...I would feel the same way..so allow yourself the time for a good pity party..you both have earned it!!!! This totally SUCKS...we HEAR you..and your dads mess is just icing on the cake...more on your plate to deal with...but all is not lost dear..personally I would still full time..even if it was just around Florida...don't make any hasty decisions until you feel better..knowing you and the massive strength that you have (both of you)..I'm sure when your head is a bit clearer you will come up a plan B...and make the best decisions for you both...we are heartbroken for you..I don't understand why there isn't a network of haematologists in place..so each one can refer you to the next one without initial consults...can't they let you take result reports from each one to the next?? I know I'm grasping at straws here..just trying to help you find or work toward a solution...not fair not fair not fair....you are in our thoughts and prayers like you wouldn't believe...please keep updating....hang in there honey..wish there was something we out here in blog land could do to wave a magic wand and make this all better...your extensive blogging family cares ...I'm sure I can speak for everyone...we all hold you both in our hearts and prayers for some bright light in all of this....

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  6. Yes, dear friend, I am so sorry for all that you are going through and the loss of the dream you both have held and cultivated. There is one other thing I can add... I am hear for a listening ear, a gentle hug and thoughts and prayers that I send your way!

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  7. All I can say is that I can tell you are both tired. Emotionally as well as physically. I know options can be difficult to see when I am overwhelmed with the negatives of the current situation. Give yourselves time to rest. Let the situation wash over you like a wave of water. When you are rested again, and have had time to sit with this when you are rested, that is the time (in my not so humble opinion...) to look to the future. Right now it seems difficult to see.

    I am sorry for all you are going through. I wish I was closer to do something. All I can do is send virtual hugs.

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  8. Wow. I am so sorry. Trite, I know, but as you said, what else is there to say. I feel your devastation, and pray that a way comes through for you to at least get short bursts of travel in. I don't know what I would do..I've been saying that a lot the past couple days as I watch folks on TV who have lost homes, businesses, personal goods from the storm. What would I do if it were all taken from me in a few hours? I don't know, and pray I never have to find out. Its so not fair, and you need to give yourself the space to say it and feel it before you can move on. I can tell you have yourself put together pretty well, and your strength will be your soul going forward. Once we get to Florida, if there's anything we can help with, we'll be there.

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  9. I KNOW there is nothing to say or can say to make u both feel better, but i am crying for the lost dreams & unfairness of your reality...

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  10. You have every right to feel overwhelmed, angry, filled with self pity, so do so. And then realize that you can overcome. After all, you always have. It will take time and effort that you don't feel like you have. Let yourself wallow in it until you are just damned tired of the entire rotten turn of events. And then figure a way to do what you want.

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  11. I understand the sudden loss of your dreams. You're right. There really is nothing that anyone can say except that they are "Sorry for your loss", and let you and David grieve in your own way.

    It isn't fair.

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  12. I didn't know what to write on the previous post; still don't know what to write. Sorry is so trite ... yet that's all one who is not living your nightmare can say. I know what I would do under the circumstances, but what's right for me wouldn't be right for you. Only you and David can decide what the next phase of the reality you have to deal with will be. I can only wish you strength as you struggle with the loss of your dream and come up with a plan to move forward.

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  13. There is nothing we can say to take away the grief you feel. It is grief and you need to let yourself feel it. It is not fair. Just know that we care about both of you and if we can do anything to brighten your days, we will- just ask.

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  14. My heart just aches for you! The exhaustion has to be so overwhelming, the wrong answers for your dreams, and I'm hearing your cry to just get off the merry-go-round! You're both in my prayers every single night and I wish I could hold you in my arms and make it all go away! I'm so thankful how sweet and kind you have been to me...I'd do ANYTHING to allow you the chance to live your dreams, no one is more deserving than you...xxoo

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  15. Sherry,
    You have said what I (probably more than my Dave) have been feeling lately. Our full-timing dream has been altered by my cancer diagnosis this summer. Even with health insurance, our finances have been dramatically impacted. Once the weather settles down here in NJ, I have a battle to do with the insurance company re: a $28,000 charge that a provider failed to preauthorize. Realistically, due to finances and other issues including possibly my ongoing health, we may never get to Colorado and all the other places and experiences we were looking forward to sharing together in the full-timing life. A return trip to Scotland/Ireland to see family (including a new grandson) is out of the question. Hence, Dave may never see his homeland and sons again and I never see my beloved adopted second country. We are fortunate that, for the foreseeable future, we have employment here in NJ that suits us with people who seem to genuinely care, healthcare resources so far have been superb and we enjoy our surroundings; however, like you, the past 12 months have taken a great toll on us and we are spirit-weary. Add to that Hurricane Sandy, the aftereffects we are currently experiencing with lack of power/gas and food shortages and the arrival of a Nor'easter next week on top of that . . . well, we're just plain tired. So we take even more pleasure in the simple things . . . the intimate shared time around a campfire, the quiet evenings together here, my blogging friends and non-RV friends . . . and try to remember that right here, right now is precious and to be lived and savored to its utmost. You and David have my deepest affection and empathy . . .

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  16. “Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. Christopher Robin to Pooh”

    You have been a rock, Sherry ... from your comments on my blog to reading your blog. I had no idea of your pain. and it is pain. a complete and total sucky bummer pain...

    I hope you do use your blog to vent ... that's what it's for. That's how I use mine ... gotta get that crap out ... put it down in black and white and read it and realize all that you've gone through ... the human spirit is freakin amazing...

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  17. Hang in there it can and will get better with time... lean on your support group as it is obvious they are there for you...

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  18. Sherry, there aren't any words I can say to make anything better. Just know that we love you and are always keeping you in our prayers.

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  19. Be sad, be angry, be whatever it takes. And know we're here to listen. I'm sorry.

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  20. Sherry, after all the disappointments you two have battled and persevered, this truly is a bitter pill to swallow. We're deeply sorry for this latest turn of events. It's so unfair.

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  21. Often times we have to get angry to give us the strength we need to push through. I have appreciated the factual accounts of all you and David have dealt with.. and continue to deal with... but I appreciate even more this emotional one. So necessary for anyone who is waging such a struggle. I am hopeful your anger and frustration will move on to determination to find a way to get these meds "on the road" so that the two of you can travel on to your "dream" destinations. I am so sorry that you and David have to deal with all of this... not to mention your father's issues at this point in time. Go ahead be angry... and channel that anger into the determination you both need to find a way to do what you want to do. Sending words of encouragement and hope to both... and love.....

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  22. Sherry - My pastor once said, "Sometimes life just sucks." And this is one of those times. Don't give up on your dream...just put it on hold. We had to come off the road for 3 years for different reasons, but one reason was a health issue. We never lost sight of our dream to get back on the road. Don't lose hope. Like others have said...relax, take a deep breath and don't make any hasty decisions. Granted, living in Florida year-round is not ideal...but we did it for several years. During the summer you just take lots of showers. :) Don't give up hope!

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  23. I'm glad you posted this because you needed to let it out. Like others I feel for you and I know that doesn't help you much at all. Keep the faith is all I can add and I will keep you both in my deepest thoughts and prayers.

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  24. Sherry, I honestly don't know what we would do in your situation. You've had such a horrible year and it's not getting any easier. You have every right to feel sorry for yourselves. Life can be so unfair.

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  25. I just read both posts today. I am sad to hear David is not out of the woods. I hope you enjoy some beach time and think through your options. You are a very strong willed person.

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  26. Damnation. My heart aches along with yours. Who wouldn't be crabby.
    You both did your best, but circumstances are what they are. Would we try to full time? Heck no. Better to create a lifestyle of comfort that best suits the reality of now.
    Dreams are ephermeral, yet malleable. Make new dreams.

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  27. Sherry, I wish we could all wrap our arms around you and David and rock back and forth while we all howl our grief, anger and disappointment at the moon. You are overwhelmed with everything that has happened in the past year and right now, all appears dark and hopeless. I wish we could carry some of the load for you. Pat

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  28. Sherry, I just had a thought. Go to rubinhealth.com . He is a guy who specializes in healthcare and health insurance. He has a program on Sirius radio and solves many peoples health insurance problems. I know you can email him with your questions re the Zometa. Maybe he can help.

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  29. That's part of friendship...you should be able to vent and say what you feel. It is part of the healing process. I am prayerful you will find joy again. Not in the way you planned but joy nonetheless.

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  30. So wish there was something each and everyone of us could do to make your's and David's life better at the moment but there isn't except to be a shoulder to cry on. I think it is good to get your feelings out there, not only for yourselves but also for others. There are many people out there waiting for the moment to retire and do the things they want to do and as you have said you retired early to do these things and then come up against a brick wall. Nobody knows what life is going to deal them so my words to them are go out and do these things while you can because you don't know what will come tomorrow. Sometimes life just sucks! Please remember we are all hear for you.

    Kevin and Ruth
    www.travelwithkevinandruth.com

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