Flight Changes

The short of it

Round 2 Treatment #1 with Williams Cancer Institute has been pushed to next Tuesday, June 3rd.

Originally, John and Todd were leaving tomorrow for treatment #1 on Wednesday. Details below, but now treatment #1 has been pushed to next Tuesday, June 3rd to allow John’s liver levels to recover now that stents are in. We are changing the flight to Monday, June 2nd.

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on May 1st from John’s hospital stay

The longer version

Last Friday, John’s procedure placed 2 stents in his pancreatic head. Now bile is not getting backed up to his liver. His jaundice is already improving. And, the most noticeable difference is that John is feeling more energetic.

Again, this journey humbles us to evaluate ‘wins’ through a whole new lens. John can barely walk - that’s shit. But, we call him laying on the couch not falling asleep: energetic. New metrics. Having John more vibrant albeit while laying on the couch, is wonderful.

I mentioned in my last post that we were scrambling to get the records and scans from last week’s hospital stay to Williams Cancer Institute (WCI). We figured this new development with the pancreas could change the WCI treatment plan. Trying to get medical records sent is somewhat of a nightmare.

First, the hospital said we could not request a transfer of John’s records until he was discharged (he discharged Wednesday). By Friday, although we marked his record transfer ‘STAT - SAME DAY’ as instructed, they still had not sent all of the records because they were waiting on them to be finalized. Unfortunately, we do not have the benefit of days.

By Friday EOD, WCI still didn’t have the imaging. We were bugging WCI for a phone call with Dr. Williams to discuss the developments even though the images had not been received, but we were not able to connect. At that time, we had to book flights for getting down to Mexico ASAP - so Friday night we finalized a flight.

Then yesterday evening (Sunday), we connected with WCI and they are going to delay John’s treatment #1. It was scheduled for this Wednesday, May 28th. But because John’s liver levels are elevated, we need to wait for those to normalize. They do not want to put John under again until those liver numbers are better, because being put under puts a big load on the liver, not only to metabolize the anesthetic agent but also in how anesthesia affects blood flow and liver enzyme production.

So, today I am changing our flights and coordinating with our friends who are going down to support John.

We are so lucky to have an amazing support system right on our block. In August 2023, I got invited to join a neighborhood book club by a friend who lives one block over on Wolff. This book club is comprised of women on my street and a block over in either direction on Vrain and Wolff. The partners of my book club’s members soon started meeting up as well. Through this book club, John and I have met some of our greatest supporters through this journey.

First of all, Todd - who I called our literal angel in my first post - and his wife, Adi. And Mark and Gillian, who Raffa adores as well. Todd and Mark are spending time with John in Mexico when he goes down since he will be there for at least a month. This is necessary at this point because it would not be possible for John to be down there alone due to mobility issues. But, obviously, the emotional support element is just as huge.

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Housekeeping

What I share, how often I share, etc. will be something I figure out as I go with this substack.

My original motivation for starting this private substack was to provide a place for our close family and friends to stay updated so I didn’t have to send individual text messages with updates. Hence the high level of detail.

However, the amount of interest in these updates is beyond what I anticipated. If you want to continue to follow along, please do. Glad to have you here. If this isn’t the level of detail you want to know about, no hard feelings whatsoever if you unsubscribe.