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

Henry David Thoreau

Days go by

Monday April 23, 2012
Lithia Springs Park Site 25


Thursday we went to the Moffitt Cancer Center for a meeting with the Bone Marrow Transplant team who explained the procedure and its time lines.  Looks like we will be unable to move from here until 3 months after the procedure which isn’t likely to happen until mid to late summer. The whole thing is quite complicated and very intense.  Each patient is different and so the time lines and outcomes are only estimates.  Sounded very scary but there are an amazing number of people with this disease and pretty much all of them do it.


Over the week-end we laid low.  Mostly doing things like this in our anti gravity chairs.  Some of us with our eyes open and looking at the pages of a book and others of us with our eyes looking at the inside of our eyelids.


Site 25 Lithia Springs 022



We also did various versions of this.


Site 25 Lithia Springs 008


Saturday night we had a big rainstorm. There were tornado warnings and we had some winds but nothing even strong enough to shake the awning.  As you can see, we are surrounded by woods so that may have helped.   And we are about 20 miles east of Tampa Bay rather than on or near the water.  In any case, I went to sleep to the sound of rain on the roof on Saturday night and not the party noises of the warriors.  Well done Mother Nature!


Most the rain soaked week-end warriors left on Sunday, all except the two pick up trucks, tent, large pit bull dog and boom box in the site next to us.  But that gives me all the more reason to go down by the river to sit and read.  I’m out of ear range of the music and almost of the dog.


Like yesterday, today was another cool after the storm day.  We woke to 52 degrees and the warmest it got was 74.  But it felt colder since we were gone all day at the Moffitt Cancer Center to talk to a Neurosurgeon about David’s back pain.  Each time we’ve been there, it has been cold inside which I really don’t get because many of the patients are very thin and don’t have any insulation to keep them warm.  You’d think a hospital would be warm.  But I digress……

Usually if you talk to a surgeon, you pretty much expect him to recommend surgery.  But this one did not.  He is the head of Neurosurgery at Moffitt and he said the back pain is not due to the bulging discs since the disc is on the left side of the back and the pain on the right.   This appears to be a flare up of a long ago racquetball injury and the degeneration in the spine caused over time by it.   The chemo drugs often cause neuropathy and this may well be related to that.  The drugs cause the nerves to be much more sensitive and combined with weight loss and muscle tone loss the spinal column is not holding like it had been.  So the possible solutions are, see a rheumatologist for more information about maintenance and management options, steroid injections being another one of those, long term yoga and physical therapy.  It MAY resolve after all this is over when he’s able to regain strength and weight but for now he’s trying yet a different pain medication.   When all this is over, looks like it is going to be a long time from now.


BUT at least no surgery and that’s a big plus!


More doctors tomorrow.  Not really what we had pictured when we planned our full timing life.  But you never know and there are no guarantees.  Thanks so much for staying  with us on this detour.


  1. Oh man, hang in there! Cancer's a tough one. My thoughts are with you.

  2. We're with you (both) for the whole journey. It's good that you can refresh yourself with visits to Mother Nature's finest work.

    Life has really thrown you a curve ball but you're handling it well.

  3. The eating and "snoozing" seem like good cool weather temp activities... especially for David. I know you both welcome the cool weather relief... and the nice campsite tht you usually have.. minus the partiers and the pitbull... ugh. Hopefully most of these folks have to go back to work! Had hoped for a magic solution for David's back pain. Some people have good luck with chiropractors... such a difficult pain to deal with. Just so you know... we are with you on this "detour" all the way.. always anxious to hear your news.. always hoping for a better pain med for David's back. We had SNOW this morning in Maryland.. not so good for my newly planted impatiens.. my plants that I love and plant each year... I should not have jumped the gun on the weather... but it had been so warm here for so long... you are both constantly on our minds and in our prayers...

  4. Sherry, I know exactly what you mean by "well done Mother Nature"; there have been a few weeekends when we've been working where we've done rain dances to keep the rabble rousers inside :-).

    Keep that chin up!

  5. Hanging in there to help you hang in there. Life is full of detours; some pleasant, some not so much. It's how we deal with them that tells the story. Stay strong both of you.

  6. Sherry, sorry for the not so good news about David's back. Maybe the rheumatologist will be able to alleviate the pain. That's what I'm hoping.

    Have they found a bone marrow transplant match, yet? I'm sure they test family first, but I'd be more than happy to be tested if it will help David. Please let me know-actionnewsat5@gmail.com and tell me what/where to go, if needed.

    We are all prepared to travel through this detour with you and David. I think everyone realizes it's the luck of the draw, and it could be any of us.

    I know this isn't what you planned for your full timing, but things don't always work out as we planned, but once you're through this detour, you'll live your dream. You're pretty good at living it on the detour--far better than I would be. Always here for you.

  7. Treats and snoozin'... snoozin' and treats. Sounds good.

    You sound a little discouraged, which sounds about right. Wouldn't it be great if everyone who knew you could take a little piece of the care off you guys, and leave you with just a little bit for yourselves? Why doesn't it work that way?

    The Good Luck Duck

  8. I am all for no surgery... having watch my wife go through chemo and radiation I can only tell you what strength you are for him... it is nearly as hard on the patients spouse as it is on the patient but I can tell from your writings that you will both do fine!!!

  9. Hi
    I just found your blog last night and since I could not get to to sleep, I read about your beach visits.
    Today we went to the broken shell beach at the National park on the island over the toll bridge. My wife did it barefoot, but said it was a bit painful.
    Next we went to a fantastic soft white sand beach, rated number 1 beach in USA in 2011. Free parking with hundreds of slots and the beach is flat and about 75 yards from berm to water. It is a great place to go Siesta Key.
    Thanks for the tips.

  10. Hi. I have a friend in Illinois that had a bone marrow transplant many, many years ago, she said it was like having a new life. Hang in there, prayers being sent your way.

  11. Well, no surgery is a good thing!! Thinking of you both & wish you well.

  12. Glad to hear about David's back. I really do hope that things are looking up. Keep up your spirits as much as you can. Prayers still :)

  13. Keep on keepin' on! Our thoughts and prayers are with you as you continue to take this detour. Hugs

  14. You are both being very strong and a terrific example of how to handle life when life hands you lemonades. Have courage my friends, we care about you and pray for you...We're all here hoping and praying for better days...and improved health for David. Love and prayers, Jeannie and Eldy

  15. Check out Gabapentin or Neurontin for neuropathy pain. It is non-narcotic and non-addictive.

    Good luck and please keep blogging.

  16. Unfortunately, all buildings in Florida are cold in the summer. They crank the air about April 1 and leave it until November 1. I know it is a bummer to be stuck there so long, but Moffitt is a fantastic facility. I am sure David will get very good care. Hang in there and we are with you guys all the way.

  17. I'm glad you didn't get any bad weather. You are braver then me...I could never sleep with a tornado warning, or even a watch!

    So sorry Davids back is not feeling any better. Keep searching for something that will help him. That is sure one thing he doesn't need right now.

    I know the bone marrow transplant will be tough for you both, once you get past that, you might be able to start the fulltiming life you dreamed about.

    Prayers to you both.

  18. Keep up the positive attitude, it really does go a long way. I hope you are able to find a solution to Dave's back pain, it must be so frustrating. As you say, you don't know what life has in store for each of us, at least you are out there now and trying to enjoy what you can. We are thinking of you.

    Don't forget to vote for us, aussieexperiences.com/contest/entry/red-centre-kevin-read/

    Kevin and Ruth

  19. I'm sure all of us wish we could help more. Let us know if there is anything we can do for either of you. Stay strong.

  20. We are hanging in there with you all the way! We can't choose our detours but you are handling this one with courage and grace. Sending you all our good vibes and wishes!

  21. We have gone through some much more minor medical issues than you but it is always discouraging to have to change your plans and disrupt your lifestyle by staying in one place for so long. Hang in there!

  22. You know that we are with you all the way. If we were there, you would both have two big bear hugs. Since we arena't, give each other bogs hugs for us.

  23. No surgery is sure something to smile about :) Sounds like I should bring at least one long sleeve shirt down there since they crank the indoor air. Look out blog readers, I'll be making an appearance! :)

  24. I don't know how you slipped this post by me?!?!? Glad to hear David does not need back surgery. Hope he does get some relief with the new med.

    I really think when Carrie arrives for her visit, that will be the best medicine;o)))

    Hugs and Happy Days....

  25. So glad David won't have to endure back surgery. Fingers crossed that his new pain meds will finally give him relief until the issue is resolved.

    So much admiration for you two in how you're dealing with this curve ball and living the F/T life as best you can. We're with you.


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