Apparently I have risen again. The first time was after completing a years worth of chemo in 2005. If all continues to go well, it appears I may have risen again in 2011 thanks to a successful bone marrow transplant. So Candi and I are beginning to think about the future.
In March we may find ourselves back in Missoula, reunited with friends and sweet Sophie our dog. So we’re wondering how we might best use this experience. What have we learned that would be worth sharing with others? We definitely intend to make ourselves available to other cancer patients – most likely through Montana Cancer Specialists – patients facing a transplant who would like to know what to anticipate day by day.
We’re learning about the problems associated with eating when you don’t feel like eating ( how do you minimize weight loss and dehydration?) We both feel more needs to be done to help patients better prepare a workable plan for nutritional success.
We’ve experienced the value of community support and want to encourage it but also feel more needs to be done in the important area of patient advocacy.
And lastly we would like to contribute to a conversation about managing the seemingly endless flow of incomprehensible paperwork and bills from hospitals, doctors, pathologists and insurance companies that begins piling up almost immediately adding more stress to an already difficult situation. Reform! Yes! How? Not sure.
--Roger
Those are all admirable and worthwhile ambitions! The paperwork particularly struck a chord. Not even having anything as large to deal with as you have, I do still know what it's like trying to wade through and decipher all the paperwork. I know after an ER visit for my son I was confused for months afterward; you don't get one bill, you get 3 or 4 from different agencies and try to keep them straight and make sure you're not getting double-dinged.
ReplyDeleteAnd I know your paperwork is monstrous. How you can ever keep it straight, sort it out and stay sane is beyond me!!
It speaks to your generosity and selflessness that already you are thinking ahead to how you can use your own struggles and experiences to help others!