To the Mayo we will go

Well I guess it’s time to make it Facebook Official. The Mayo Clinic and I are about to enter into a relationship. We’ve been dancing around this for some time. To be honest it’s been a bit of a rocky start with all that lack of returning my calls and such. Then I thought I might be interested in someone else that lives a bit closer, but that didn’t work out like I hoped, so we’re back to talking to each other again. Friday we set a date, so I guess you could say it’s getting pretty serious.

Ok, enough of the funny stuff. I thought it was a good time to make an update as we actually have some forward progress underway. Last week I was hitting the phones hard trying to follow up and push through the bureaucracy between the Huntsman Cancer Center and my insurance provider, EMI Health. EMI kept telling me Huntsman is “out of network” but that if Huntsman would sign on to a Singe Case Agreement we could make it work for me to participate in their installation of the clinical trial. Huntsman said they were on board and tried to establish contact with EMI twice, but EMI refused the situation according to Huntsman. Much disappointment both for me and the research group at Huntsman actually.

I get it, to some degree. This is a business and professionals need to be paid so contracts have to be in place. I’m not bitter, but it’s still exasperating at times. I’m not sure of the reasoning but in the end I don’t think any amount of pushing was going to make this a reality. So rather than continue to escalate and grateful I kept up my dialog with the Mayo Clinic, I committed to a date and booked the flights. I’m headed to Phoenix.

It seems pretty silly to make a trip and incur the time, expense and multiple days away for the same testing and treatments I could receive locally, but it is what it is. We are booked on el cheapo flights through Allegiant crossing our fingers weather is good and the flights go through. We’ve had them cancel before and there’s really no recourse other than to wait until the next day as they only fly once out of the local airport. There is reimbursement for some travel expenses, but with a pretty low limit in place and other restrictions I’m sure I’ve yet to discover. With that in mind I’m skipping all the fees they throw in for seat reservations, carry on or check bags, and even picking any seat in advance. I’ll take what they give me…and LIKE IT.

Part of the effort of keeping costs down also is that Heather really wants to come with me on the first visit. I’m not sure yet if we get any reimbursement for “caregiver” travel expenses, so this might be on our own dime. We are grateful that some extended-related-only-by-marriage type family lives nearby the clinic and has offered to house us. That will save plenty as Phoenix hotel prices are through the roof right now in their peak season because people are fleeing to warmer climes.

Headed to warmer weather for a coupe of days is a nice side benefit to this, although I expect the vast majority of my time will be spent inside the walls of the hospital getting poked, flooded with x-rays, signing my life away or otherwise passing the time in uncomfortable waiting rooms for the next opportunity to do any part of those things listed. Such fun times I assure you.

But with it all, I’m happy and grateful to be once again feeling some positive motion. Doing nothing just isn’t in my makeup, and being on a drug that I know isn’t working yet was still making me feel terrible is most unsatisfying. Even off of the drug now I’m still not feeling the best each day, so that do nothing lack of effort unsettles me because I know the cancer could be growing and spreading unabated. Unsettling is putting it lightly.

Going to this trial isn’t all sunshine and roses either. It’s an opportunity to see if some new medication is a good fit for me, which is a good thing. But I have a 50/50 chance of being selected as a placebo at first, which would mean being on the third tier approved drug that has all it’s known side effects and limited efficacy. On the upside, if I fail that drug pretty quickly I can switch over to the trial drug. Both of these are still an effort to just slow the growth of the cancer, but I’ll take what I can get and hope for the best.

In the meantime I’ve still been making lots of personal efforts with alternative supplementation and routines. Many reach out with different ideas, documentaries they’ve watched, and things they’ve heard or read. While many are not applicable to me or things I’ve read and perhaps discounted on their applicability to me, know I do listen and investigate such things. I’m open to ideas but also approach things very analytically. More on that another time. I’m particularly interested in what some of these baseline scans will show as we start the trial for the things I’ve been trying over the last couple of months.

Mostly that’s the latest on the health front. We’ll be headed down to Phoenix in a couple of weeks and see if they give the final nod for acceptance to the clinical trial and if so I’ll start on their protocols. It’s pretty restrictive and downright invasive to some aspects of life that we’ll have to agree to as we sign on to the treatment. Kind of surprising in some of the detail in which they make you agree to. But if we can find some, really any good success with the treatment, we’ll take it. Focus on the good, work with the not so good. That’s how we roll.