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Naugahide

5/12/2021

I had my annual physical yesterday and a simple reminder of Madison surfaced. Blood draw: the guy who tried twice, got it right the 3rd time actually chasing a vein around with a needle... twice. I donate blood every two months and in my 62 years, I've never needed a retry... apparently I have good veins.

Madison had thinner veins, and maybe 30% of the time they'd chase a vein around when giving her an IV or drawing blood. It was easy for me -not- to be impatient with the newbie poking a needle around in me because among other things, Madison taught me patience... I remember far too many times a nurse poking Madison: her levels or patience, grace, and understanding were amazing.

So now I'm in a gown wearing my boxers and socks... the doctor comes in, does the usual stuff, asks the general questions... all-good. As he's putting on a rubber glove and greasing his finger, I know what's coming... a prostate check. I told the doctor if he plans on going south (my butt) with that hand, we're going to need a safe word. He says "pardon me", and I say 'never mind'.

He asks me to lay on my right side and pull my left butt cheek up, then in goes his finger. Of course I blurt out "NAUGAHIDE".

Part 2 of ?

5/9/2021

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.

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!

The next time you feel like taking pictures of your feet and posting them on social media, consider instead taking 12 minutes to listen to the insights about meditation at this link. If you've not yet clicked the read about Crystal's story it's here, and she beautifully describes her journey.

Reflections - Part 1 of ?

5/1/2021

In the late 90s I was sitting in an intersection waiting to make a left turn and was broadsided by a woman in her 90s who blew the red light. She admitted pressing the wrong peddle to stop, and T-boned my drivers door and front fender with her foot buried on the accelerator. We were all lucky. There's a point in time when it's simply time to take car keys away from our elderly and I gotta tell ya, it's rough on the adult kids... really rough. I can't even imagine losing that privilege, but ideally there will be self-driving Ubers when it's time to concede the roads are safer without me... despite the almost perfect behavior of other drivers when I'm motoring around given my ride.

About that same time (late 90s) a very young couple with an infant knocked on my moms door asking if it'd be okay to sleep in her barn that night. They barely spoke English, it was dark, drizzling and my mom decided the barn may not be suitable but then again... these are complete strangers... so my mom allowed them to sleep in her bomb shelter. Over the next two decades Lugo and Gloria became family paying my mom a minimal rent for her increased utility costs. They cleaned her home, took care of the yard, got green cards, good jobs, paid taxes, and in 2017 had saved enough to retire and moved back to Mexico. Rudy, that infant, earned his PhD in psychology, and is a bi-lingual therapist and I believe... also became a professor. As they were preparing to move, Lugo pulled me aside and mentioned there are potential crooks down the street from my mom. He'd gone nose-to-nose with them and they pretty much stayed away (there's a but coming) because there were always cars coming and going from my moms. Lugo, Gloria, and Rudy each had cars.

But! My mom started having fender-bender parking lot accidents in 2017. She told her insurance agent her version, adding "Don't tell Chris" but since Windi and I are close friend and is our agent too, I knew. Losing the privilege of driving is robbing someone of their independence, but when my mom told me she sees shadows of trees in the road and slows way down because it might be a person I thought damn. Damn. The time had come, so I "borrowed" her car to be sold and never seen by her again. I was the villain in this chapter of her life and being the only local ‘kid’, I’d be lying if I didn’t pay the piper. She’d decide her dog need her nails trimmed: she’d call my office phone, then my cell, then our home phone leaving me a where-are-you message wanting me to pick her up and her dog up and run them to the groomer. “Mom, no… I can’t take off work, have meetings all afternoon but will find a mobile dog groomer and Bella can get a warm bath too”. “Fine, we can go Saturday”.

Solo-agers obviously need groceries, have a ton of eye, dentist, and doctor appointments: we floated those boats as best we could but it was a lot to juggle. At the time Angela and I were in a bowling league and there were four others who were the only local ‘kids’ of solo-aging moms who can’t drive. Solo-aging moms can be ruthless to their local 'kids', passive aggressive suggestions, and we all experienced the “it’s only a 15 minute doctor appointment and you can just take a long lunch!”

In 2017 Lugo and Gloria moved to Mexico, son Rudy was living his American dream, Angela and I were floating my mom’s boat along with dial-a-ride, bad actors lived in her neighborhood, and then my mom just stopped needing rides to anywhere. Being almost afraid to ask if she needs groceries because she loved being out and about, I had to ask how she was doing, getting groceries, and did you stop going to the doctors?! No she replied, "her new neighbors" are taking her shopping… driving her to the doctors too. Ruh Roe. Mom, who are these neighbors?! She only knew their first names. "So mom, so let me understand… they drive you to doctors and take you to the store?" Oh yes, and clean her fridge and help around the yard!

Whelp, I decided that I need to meet them and would take pictures of their ID. “Oh says mom, no need… they’re with the Village”. Wait, what... what Village? “THE Village”. Huh? Were these bad actors looking to get in to my mom’s good graces, earn her trust, then start stealing from her, pull checks out her checkbook, or worse: besides yardwork, driving her to the store, ALL doctor, eye, and dentist appointments... they were driving her to the bank too. Oddly but typical, my mom wanted to keep them separated from me. I Googled 'the village' 12 ways from Sunday and finally figured it out.... the Conejo Valley Village. The Village-to-Village concept was born in Boston, just neighbors helping neighbors. As the concept was embraced, it was shaped in to a non-profit franchise of sorts, more Villages popped up. With best practices, Village guidelines, a compute platform identified, Villages started sprouting across the US... and my mom found one in her backyard! The volunteers are all vetted, criminal background and driving records checked, a pool volunteers who changed my life and without exaggeration, improved AND extended my mom's life. Solo-agers are like covid peeps who can't drive. Ask yourself this for the people who mostly hunkered down in 2020: did you wash your hair as often as you did in 2019... wear that pair of pants or shirt a tad longer than 'normal' times? That's what it's like being a solo-ager... seniors living alone who can't drive with their mission in life to elevate and escalate their expectations of us adult 'kids'.

Finding her Village and her new peeps, my mom gained strength, was less wobbly, and had a new social life. There are numerous volunteers older than my mom picking her up, throwing her walker in their trunk, then off to a Village coordinated happy hour, book club, lunch, mall walk, movie night, pot luck, etc. I think there was unspoken peer pressure: my mom is a very bright and perceptive lady. Watching people her age move so much better, mom became much more active, and looked so much better... because of them. What the Village offered me was guilt-free independence. This all unfolded in 2017 and needless to say mom's and I had other priorities like getting Madison to San Francisco 1-2 times a month. I wrote the Village Chief a thank you letter which ended up in their Newsletter, then met Val for lunch. I offered to do whatever was within my capacity to help because they truly offered independence for dependents like me, made my mom healthier, extended her life, and offered her a social life with other solo-agers and volunteers who were clean, kept, mobile... all because of the unspoken peer pressure: in these covid days not being around many others... who looks in the mirror, and how much less often?

Part 2 of ? will be written within the next week. The trigger spawning this brain-dump was a cousin of Angela's calling last month just to catch up. He'd recently retired, just checking in, and we'd not seen him since Angela's mom funeral in 2016. Madison was there, 21, wicked curly dark hair, engaging and talkative, and appeared perfect! On the phone last week, Angela's cousin asked her what we're up to, what Madison was up to...

He didn't know that Madison had bone cancer... she looked perfect in 2016. Reflecting back, 2016 was mostly perfect. To cut to the end of this X of Y chapter, I ended up sitting in a lawn chair at the Borderline in Thousand Oaks having lunch last month. 12 people died there: people's friends and family members were robbed because of that shooting in an instant. When one person dies, it easily impacts a dozen. When a dozen people die, it literally impacts hundreds to their cores. It was the full gamut of reflections and emotions feeling that Madison was robbed of her mortal presence. That said, in September 2017 Madison prepared us as best she could... with her imminent and premature departure from planet earth.

Madison, her mom's and I all learned how to live large in 2017, but also unfortunately how to die. In 2015 we had the opportunity to hear an ex-pastor named David speak: he worked the oncology ward at UCLA for over a decade. David mentioned speaking with the thousands of cancer patients over the years who understood they've exhausted all treatment options: overwhelmingly they wanted three things... to go quickly, pain-free, and in their sleep. David asked the audience of cancer patients at our Cancer Support Center the same thing, with the same responses. He asked who was afraid to die, and hands went up. For the most part, people mostly felt guilty leaving their friends and family behind, which is in part is an honest concern/fear. David asked this audience of cancer patients by a show of hands, "if you could rewind back to the day before your cancer diagnosis and die in your sleep, quickly, and pain free... would you?" Not a single hand went up, consistent the 99% of the responses he got while at UCLA. He reminded the audience by show of hands, "who has had surgery?" Most. He then ask had multiple surgeries or a metastasis? Many. "How about radiation?" Most hands went up. "Okay, another show of hands... who had chemo?" Most. "Who lost their hair and felt the horrible effects of chemo?" (see where he's taking us??). David led everyone to the conclusion that despite extensive chemo, surgeries, enough radiation to make the silverware rattle when you walk through the kitchen, the extra years cancer patients gain was worth it.

Just like Madison...

He finally asked "if you could live to be 500 years old, would you?" That was an interesting discussion. Humans are seemingly built such that we take risks knowing we won't live forever while forgoing risks that might end in paralysis, and don't want to out-live everyone in our lives.

We all love and miss you too Madison, but your bathroom turned in to a pain in the ass. The walls are not evenly aligned, so we took all of the drywall out. That said, I still do sit when I pee in your toilet... you're welcome.

Love,
Dad and moms

Naugahide

Part 2 of ?

Reflections - Part 1 of ?

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