Morning and Happy 4th of July! Had 3 amazing days of Dead and Company shows in Boulder with family and friends. Last night ended with Dave Matthews joining the band for the final 4 songs and drones lighting up the sky as a giant Steal Your Face....
Quite a few things have happened since I last posted. I started on the steroid on Wednesday June 28th. While I didnt notice any immediate changes, Jen mentioned I had more energy on Friday and I needed it heading into the long weekend. Also started the antibiotic although that's on a different schedule.
On Wednesday, I also spoke with a friend from work who asked if i'd be interested in talking with Dr. John Kim (in Los Angeles) as they had mentioned my situation and he offered to catch up with me. He ended up calling Wednesday night and we spoke for about 45 minutes. As I had a minute to give a brief Medical history, he brought up a few things that haven't been mentioned by my dr's (question of lymphoma, maybe the benefit of a "spyglass" if I need another ERCP/EUS and the possibility this is somehow connected to prior testicular cancer). Great guy willing to take a few minutes to talk with a friend of a friend....
While I was talking to Dr. Kim, Hockey buddy (Mike) texted to see how I was doing. He is a Harvard trained MD and ended up calling to hear exactly whats going on. As we're talking, he starts typing out email to Dr. Peter Banks, the Director of Center for Pancreatic Disease and a professor at Harvard. He asks Dr Banks if he has some time to talk with me and review my case. Dr Banks responds quickly saying he is going out of town and for me to call him Thursday. I give Dr. Banks the high level overview and he says he will connect when he is back in town after the holiday. He calls back late Thursday asking me to send copies of scans/Med records related to the pancreas and have them at his house when he returns. He provides him home address and then says "i've seen this before...." and is the first dr we've talked with who's said that. To this point, everyone else has been stumped saying they dont know exactly what's going on. As you can imagine, some excitement hearing that as well as him saying it was good Dr. Ed got me on the steroids.
And finally, late last year, through a family friend, I was introduced to Dr. Nicolas Nissen from Cedars Sinai. He reviewed my scans and provided some feedback on the lesion. The same family friend suggested I visit with Nissen and Dr Davis Berz asap for a "2nd" (or maybe 3rd or 4th) opinion. As you know we've already postponed the initial Whipple, the time is right and i'm headed to LA Wednesday night for some appointments on Thursday and Friday. I went to UC health last week and got copies of scans/records and have them ready to share with Dr's in LA. While I dont know if they're thoughts will be consistent with the UC Health med team, something needs to happen soon as UC health called yesterday...
Received a call from Cheryl Meguid. She is part of the pancreatic team and the multidisciplinary board and I think my healthcare advocate. Last December, just before Christmas, we met Cheryl at the appointment where I was asked to make the decision if I wanted to schedule the Whipple right after New Years and we've not seen her since. So, she calls and follows up on what Dr's had discussed... a month of steroids before another set of scans and Cheryl offers to make the scan appointment on the 25th. She also mentions there will be a multidisciplinary meeting that day and we will schedule time to talk. A bit later I see a couple emails mentioning appointments and check the portal to see whats up:
July 25:
825am - CT Scans
930am - Multidisciplinary appointment with Cheryl
10am - Lab work
1pm - Multidisciplinary appointment (I believe this is when the board meets and wonder if she wants us to attend the actual conversation. At one point Del Chairo said I had the Most discussed Pancreas at UC Health and the possibility of us meeting with the board....)
3pm - Pre-Procedure services.... (I had a Pre procedure meeting a few weeks ago with anesthesiology and wonder what this is about)
So yea, that sounds like a fun day. Before we got off the phone, I mentioned we're speaking with other dr's including the So Cal visit this week. When I spoke with Nissen earlier in the year, neither of the Dr's wanted to talk with each other and both said "have him call me to discuss." Cheryl supported getting additional opinions and agreed she is the right person to have the outside Dr's contact to discuss my case. Extremely helpful as she can manage and schedule the conversation if there is a need for them to talk.
Lots happening and optimistic these Dr's will agree on the path forward and best options.... whatever they are. We're ready and still want to avoid missing that point of no return (portal Vein thing).
And finally, I feel okay. Could be better and i'm sure it could be a lot worse.
Hope you're holiday is fantastic and thanks for the texts, calls and support.
Sam
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