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It's Complicated

I have been diagnosed with a rare type of incurable cancer-that's the not good news. The better news is that if we get this right I will live for years and more hopefully[...] read more

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Heart Surgery Adventure

Finally an update straight from me, (amber) brought to you by I’m feeling good and I’m getting super restless. Uh I mean #AmberStrong. I’ve been in hospitals since July 25th. First one in Redding, then UCSF since July 28th, trying to get into shape to have the heart surgery that had been planned for August 3rd. My cancer cells, releasing the floods of hormones in my bloodstreams had already made it necessary to replace my pulmonic and tricuspid valves (usually that takes way longer but my overachiever saga continues apparently). In the meantime some of my other bodily systems decided they wanted to get into the game of crapping out early as well, thus the extra early check in to the Redding hospital and a nice flight transport from Redding to San Francisco.
I did get the valve surgery as planned thanks to many nurses, doctors and others who got my body back into good enough shape. Just after the surgery I apparently checked out awhile and at this point can’t at all remember coming out of it, getting off, intubation etc. and then spent a day or so where I couldn’t sleep more than moments at a time. This delayed a “normal” recovery path and aggravated quite a lot of the other things that had been going on with my body. I got back to sleeping Sunday night Aug 5th (sorry dad missed your bday) and fully participating in recovering by Monday morning Aug 6th.
FF to today, Saturday, August 11th, and I am still at UCSF but feeling strong and doing well. My lungs that never wanted to fully inflate post surgery to get me to regular breathing post surgery have now gone through enough breathing treatments and exercises that my breathing has gotten pretty good. The other end is a weird jumble of issues with machines gathering conflicting information about some things that seems to continue a debate about whether or not I should get a pacemaker.
For my cancer monitoring I have to get MRIs and other types of scans that I’d believed were impossible with a pacemaker. So as you can imagine I really wasn’t having it. I’ve now been reassured by a few docs that the latest and greatest pacemakers can be put in and after a month of healing will no longer be a risk to my scans. Assuming that’s true my pacemaker fight is generally done. I’d just like them to be clear about all those machine and data conflicts as well. Even that I’m sorta ready to set aside if they’d just let me go home. Last we’ve heard they think they want to make a decision Sunday, still giving themselves wiggle room until Monday when any pacemaker surgeries actually get done, to continue changing their minds if appropriate. If everything went well, my breathing stays solid and improving I could then maybe get released Tuesday. But yeah definitely no guarantees on that date lol. And thus the saga of how I maybe in the hospital for a solid 3 weeks, maybe more.
Richard has been with me for all of it maybe less about 24 hours of when we were still in Redding and he was going home to get things setup for a long haul in San Francisco. My dad rescheduled flights to be here sooner than that original surgery spent some time with me then went to Redding to be with the boys and get the house ready for my return. Had several friends (aka family) here with me in San Francisco and on the boys in Redding. I don’t want to type them all out because I’d never make the whole list but yeah I love and appreciate you all. Plus the story of Aileen and Richard being there for a particular bathroom related milestone is really their’s to tell lol.

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