It had been a long time since I've posted anything. My style has been adding to a draft with thoughts as they pop up, and then saving for when it's time to press the publish button. I have a very full draft that's mostly not applicable now, so that'll likely die on the vine. Most of it was a during the last 12 months and a lot has changed. Part of me wanted to roll the dice, get on a bus and lick the poles and handles on the seat-backs in front of me. Then, Uber home and do the same in his/her car. Strongly assuming I survive the virus, in theory... I'd likely have immunity to it. The only hitch in that giddy-yup would have been Angela: we've discussed a plan if either of us is diagnosed with covid-19 but she wasn't willing to live in our small motor-home... either way. Last April we both had projects we wanted to do at least one of them daily. It was time to re-seal the grout in the shower of our master bathroom. Angela scrubbed it like crazy, then sealed the grout. Allowing the sealer to soak in for a couple of days, I used Madison's shower. We had her shampoo, conditioner, and soap in handy containers which we left thinking they'd be handy for overnight guests. Something I still treasure is realizing on occasion that Madison was the last person who touched a particular item. There was a bar of soap on the rack in her shower. I used it, and was amazed! It's only now obvious that she preferred that bar over the bottle soap, and that she held it firmly with one hand in the same position, and rubbed finger grooves in it that were the width of hers. How cool! A year ago it would likely had brought a happy-ish tear or two but last week was a simple look Up, saying 'I love you' adding in thought (without saying aloud) that I'll wash my face and pits with your soap, but use the container soap for everything else south of my belly button and then of course another silent 'you're welcome'.
This February I virtually met two of my future new BFFs, Erik and Cindy. Erik had recently been diagnosed with chordoma in his sacrum (lower spine) and his then current doctors Nincompoop and Dipshit had scheduled him for a ludicrously over-intrusive surgery. In the Chordoma group I co-moderate I know of only two other patients who had the same approach... the same one proposed to Erik at the same hospital. The group has 2,500 members in >80 countries and I only personally know of two. Interestingly in the USA the members are 70% women, 30% men. Outside of the USA, it's reversed... 70% men and 30% women. Chordoma impacts more men than women, so it's easy to conclude in the USA that we Martians don't like asking for support or guidance. Any-who, Erik jumped in to the middle of the fray and reached out to numerous sacral patients, including the two patients of Dr's Nincompoop and Dipshit. They were both hospitalized for 8 and 10 weeks, then inpatient rehab for months. I've learned that if you show me a surgeon without a huge ego projecting absolute confidence, I'll show you a loser. That said, surgeons who don't know what they don't know still press full-steam-ahead. I'm proud of Erik. He researched the chordoma in all of the right places, arming himself with knowledge to a level approaching expertise. He connected with enough patients in the group and amassed the collective wisdom of peoples experiences to ask his future ex-surgeons some superb questions about the 'why' such overly complex surgeries, adding that with UK group, the International group, the Ozzie and Brazil group, there only seems to be one facility on the planet that uses their proposed gut, de-bone, and re-gut approach. The future ex-medical team then softened and said they may not have to be so intrusive after all but Erik learned enough that he would go elsewhere to a team that treats chordoma routinely. He had his enbloc surgery (tumor taken out in one piece with margins) on March 9. Had he been a typical get-this-thing-out-of-me Martian in a hurry, he's still likely be in the hospital potentially facing 1-2 more months of inpatient rehab. I saw a picture of him on Facebook recently.
This February I virtually met two of my future new BFFs, Erik and Cindy. Erik had recently been diagnosed with chordoma in his sacrum (lower spine) and his then current doctors Nincompoop and Dipshit had scheduled him for a ludicrously over-intrusive surgery. In the Chordoma group I co-moderate I know of only two other patients who had the same approach... the same one proposed to Erik at the same hospital. The group has 2,500 members in >80 countries and I only personally know of two. Interestingly in the USA the members are 70% women, 30% men. Outside of the USA, it's reversed... 70% men and 30% women. Chordoma impacts more men than women, so it's easy to conclude in the USA that we Martians don't like asking for support or guidance. Any-who, Erik jumped in to the middle of the fray and reached out to numerous sacral patients, including the two patients of Dr's Nincompoop and Dipshit. They were both hospitalized for 8 and 10 weeks, then inpatient rehab for months. I've learned that if you show me a surgeon without a huge ego projecting absolute confidence, I'll show you a loser. That said, surgeons who don't know what they don't know still press full-steam-ahead. I'm proud of Erik. He researched the chordoma in all of the right places, arming himself with knowledge to a level approaching expertise. He connected with enough patients in the group and amassed the collective wisdom of peoples experiences to ask his future ex-surgeons some superb questions about the 'why' such overly complex surgeries, adding that with UK group, the International group, the Ozzie and Brazil group, there only seems to be one facility on the planet that uses their proposed gut, de-bone, and re-gut approach. The future ex-medical team then softened and said they may not have to be so intrusive after all but Erik learned enough that he would go elsewhere to a team that treats chordoma routinely. He had his enbloc surgery (tumor taken out in one piece with margins) on March 9. Had he been a typical get-this-thing-out-of-me Martian in a hurry, he's still likely be in the hospital potentially facing 1-2 more months of inpatient rehab. I saw a picture of him on Facebook recently.
He'd driven to restaurant with Cindy and decided that deceived he was due for a shooter. Wait, what?! No lime! The subject line of his FB post was simply "I'm back". That picture is eye candy when considering where he could have been had he subscribed and accepted Plan-A, and how far he's come in the past two months... to the day.
Part of me too is thinking WIMP! He waived her off without killing the bottle :-)
Erik sent me a text a couple of days ago asking me if I'd seen the latest about Crystal, another chordoma peep. Her story is wonderfully written at this link... about a 60 minute read without taking any detours (other related links) and IMO, well worth it... all of it. At the bottom of each page, there's a Part 2, then from that a Part 3, etc. Crystal had descended to the lowest depths imaginable... and almost kept digging. To cut to the chase, she is at a very happy place now. Towards the middle of her blog, Crystal posted a link to a motivational speaker with a focus on meditation. I've watched the video (link here) several times... it's truly outstanding! I have a lot of take-aways, but just one of my favorites is at the 5:00 minute mark: "the best way to predict the future is to create it..."
Pictures from her blog... it's extremely well done and I hope she makes time to write her book... she's awesome!
Pictures from her blog... it's extremely well done and I hope she makes time to write her book... she's awesome!
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