Leslie and I traveled to Los Angeles yesterday and met with the esteemed urologist from Keck USC. We waited in the waiting room for two hours and we were finally ushered into a room with a P.A. or an intern, not quite sure what she was? Young and a little too confident for my taste. An attractive woman, the vibes with her were terrible from the getgo. Not sure why, but it just didn't click between us.
She reviewed my records and said that with my particular T1 cancer there were three options available in the accepted protocol and that they all involved complete removal of the bladder. Said the doctor was an expert at creating a new bladder out of a bowel section but that I would have to wear rubber pants at night until I got the hang of the whole thing. Did I want the internal, the external or perhaps a nice port through my navel?
The short story is that I flipped out, internally anyway, mostly, said it was unacceptable to me, argued strongly for a more incremental approach. I am not sure why but I was incredibly angry, irrationally so. She took stock of the situation, stood up and got the doctor.
My rapport with him was fantastic. Night and day. He actually agreed with me, and came up with a plan. He will reevaluate the blue light pathology slides and make sure that the reads are accurate. In six weeks they are going to resect the old tumor locations. If they don't find cancer cells in the new pathology reports than I will start an immunotherapeutic regimen as I have before and if it is BCG, which is now incredibly hard to obtain because of global scarcity, I jump to the head of the list because of the nature of my carcinoma.
I can't ask for more than that. I can't guarantee that we will ultimately be successful but I am not psychologically equipped for another organ removal at the moment and am not willing to say goodbye to my bladder without a fight. Bought some time. Resorted to hard bargaining but it is the only body I have and at times you have to be your own fierce personal advocate.
USC is the number one rated urology school in California, rated fourth nationally. If you are ever in serious medical straits, go to a teaching hospital. I feel very good about this doctor. This turn of events will allow me to exhibit at the majority of my shows in the next two months and keep everything going. Hopefully I will gain strength and energy in the days ahead. Thanks again for all of your prayers and good thoughts.
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Yosemite morning
12 comments:
Time and hope. You can't get a better result than that. While your initial response may have been uncomfortable , it was completely rational in the stress of the moment. And one I would have repeated to a T.
Given all of the anxiety of your condition and the inexperience of the PA (whatever), you made the right decision. My thoughts and prayers for a good outcome and full health restoration are with you and Leslie.
Rooting for you, as ever, Robert. Glad to hear your intent and fighting spirit remain strong. I'll look forward to seeing you at the Hillsborough Antiques Show. Righteously rage on!
Good News. Nice photo of the Tetons.
Hi Robert,
So glad to hear from you.....sorry about the long day/drive yesterday. Good that Leslie was with you.
You sure had to go through a couple layers of Hell before finally getting to the anointed one. I’m sure the pa was not expecting an informed patient....most people have no idea about their condition or what to expect....thankfully, you are not most people. She had probably never had another experience with someone who knew what their options were and had opinions about them all. I’m sure most of the people she sees just sit and agree with her.
BUT great news! So relieved! If nothing else, a strategy for recovery. Mentally AND
physically. Speaking of which, hope that the antibiotics have had a chance to work their magic and the pain has lessened, allowing you to get some sleep.
Thanks for keeping us informed. Let us know when you and Leslie are able to go out and celebrate!
Love,
Bob and Lois
I'm happy and relieved that you came up with a new, effective plan. Proud of you for being your own medical advocate!
The confidence of youth is often misguided. Good on ya for holding out for experience.
Sometimes, I have found in my relatively limited experience with full-of-themselves junior medical folk, one just has to tell them to 'shove it' and let them know in no uncertain terms what is acceptable and what is not. Good for you for insisting on exploring further options with the MD.
I"m so glad to hear all this. Best thoughts always ~ D.O.
I want you to be better. Too much has happened to you. Love you.
Thinking about you, good friend. Sounds like the team of L and R are once again in top form.
Sounds good. I've been worrying and thinking about you.
Barbara
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