I Feel Good - The Great Irony

Singing ( actuallyyelling) to the tune that James Brown made famous, I have to admit that "I FEEL GOOD, LIKE I KNEW THAT I WOULD NOW." This is the irony that I find myself in. I have been recovering from radiation/chemo for quite a while now. My stamina is still building, my appetite is getting better, food is enjoyable again, my repertoire of culinary delights continues to expand, and I find that I can eat things now that I haven't been able to in the past. Heck, I've even been able to stop taking Caumadin (thank goodness) so I don't feel (in true medical terms) yucky. Overall, I feel as physically good as I have in the past year or so.

So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!

OK, enough lamenting! Here's what's happening these days.

I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.

OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!

So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.

I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)

I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.

Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.