Mayo Clinic, deconstructed

Dear friends,

This will be my last post about doctors, and their general merits and demerits. I think I have done a little too much of the latter, anyway, and it gets tiresome after a while.

I have been thinking about the Mayo visit .. and I realized that I have never mentioned the doctor who got us into the Mayo so quickly. Chip Rowe is a friend of Jenn, so unsurprisingly, he is cut from a different cloth than some others that I have seen in his profession. Chip was the one who sounded the alarm when I went in to see Jenn initially, and together with Jenn, insisted that I get an MRI. And Chip was the doctor who called us on Saturday, a day after the results came back from the radiologist, to talk to us about what this all meant. Keep in mind, this man is not our doctor, has never even seen us, and is currently somewhere in Illinois/Indiana!

Since then, Chip has been there for us, willing to talk to us, comforting us, just letting us know that he is there for us ..... Andre and I have sometimes just looked at each other in disbelief at his kindness and compassion. It was he who promised to get us into the Mayo and then delivered and we really appreciate it. Except that as I deconstruct our Mayo visit, I think what I have might seem ungrateful ... but Chip, if you are reading this, I do not mean to be, and it pains me to write this, knowing that you wanted a very different experience for me.

Still, every morning or afternoon, I get a lecture, in German, from Andre's mom on how I must stop thinking of other people's feelings and start focusing on myself, how I must speak my own truth with my own voice with confidence, and how I must give myself the same love that I give others. Please note, I am giving you the Cliff Notes version and I am not, by any means, fluent in German, though I don't doubt that I shall soon be. ;)

So here goes. Andre and I were disappointed in the Mayo for several reasons that we have now understood. First, we went hoping to see a team -- we expected to see several doctors, and certainly a sarcoma specialist. We saw two -- a surgeon, from whom we learned nothing new, and the oncologist, who was too young to be a sarcoma specialist, given that, as the surgeon sagely told us, there are more people diagnosed with prostate cancer in the 20 minutes we were with him than diagnosed with sarcoma in an entire year.

Granted that she consulted with a team and then spoke with us, but frankly, I know the difference between myself now as an instructor, and myself 2 years into my CSUSM career. If I fly all the way out to cold Minnesota, I want to see the old, grizzled doctor, not an assistant professor. (Shucks, I have tenure ... should have told her that! Andre adds that I should also have told her that she's not going to get tenure the way she's going, but that's a trifle uncharitable, so we'll leave it be.)

It would have been interesting to see the radiation oncologist, to assess if he was assigning a 50% success rate to radiation because he was unsure of himself, the technology, or me.
And it is that last piece that was so missing at the Mayo. The oncologist pulled up a treatment plan that was their standardized plan to give to osteosarcoma patients. Yes, I know, some, perhaps most doctors don't believe that the individual has much to contribute to their own treatment, but it is absolute irrelevance to me what they believe. I believe that my treatment needs to be tailored to me, not based on some average obtained from a clinical trial. That's a good starting point for sure, but I want the assurance on the part of my doctor that more will be taken into account.

Was this because I was flying in and they had to give me something? If so, that suggests, I am better off with someone local. And so far, that is the one great positive of the Mayo. Charles Forscher at Cedars Sinai is starting to look good. He works only in sarcomas and so far, he hasn't startled me by pulling something out of his top drawer.

There is a final incident that prejudices me completely against the Mayo. It's a small thing, but to me, has a prophetic ring. Jenn spoke with the oncologist about a sleeping aid for me, suggesting Ambien. The oncologist, I had observed, was already a little thrown off by Jenn's assertiveness and ease of medical jargon. She reacted by asking me if I really wanted that; I replied that I did. Then, she said, "Well, I think you'll need the controlled release Ambien rather than the regular strength.." and went into some spiel about insurance potentially not covering it. Jenn disagreed and then suggested that she just try giving me the regular one and then we could always get the controlled release, if needed. She ignored Jenn and prescribed the controlled release Ambien.

I had it that night and the next -- I was a zombie. Came back home, Jenn lent me one pill of her regular Ambien and I slept amazingly soundly last night, got up this morning, walked Mira to school, and enough wits left me in me to find a park where I could meditate.

And this is what my meditation brought me. I know EXACTLY what I want in a doctor, and I know where and how I to find it. There are a few more interviews that need to take place but I am narrowing it down, to MY satisfaction, and really, mine is the only satisfaction that matters ..... snicker!

What I am trying to say is that I have, through my initial posts, perhaps, put angst into many of you of where I am going and whether I had the sense or ability to choose. I was in a very bad place, and I may well return there again, but for now, my sense of purpose has returned and I intend to walk this journey on my own terms, choosing those whom I see best fit to help me. That will not include the Mayo Clinic at this time.

Tomorrow, we see the radiation oncologist at Cedars Sinai and an osteopath. I feel confident that we are going on the right track. Bolster my confidence by trusting in me!

I love you all a lot and am so grateful to all of you. The meals have started and they take a load off of us -- thank you. I eat each bite, knowing the power of your good thoughts and wishes are in them. Good night!