Thursday, August 1, 2019

Playing Hooky & Visitation Situation


                                                                  Sunset at Nick's Cove

One of the biggest upsides of this whole thing is how deeply we are connecting with each other, and our close friends. Even strangers! For example, Clara just came home last night all lit up because she confessed to her Lyft driver a bit about all the drama of having a Dad with a terminal brain tumor, and he opened up to her to share some of his own tales and to give her encouragement. She was open to it and it touched her. That is the kind of interaction that sustains us.

Speaking of Lyft, that reminds me of all the apps powering this cancer crisis. Figured you tech folks might find this of interest.

Top 5 Apps for Dealing with This Crazy Ass Brain Tumor Situation

1) Lyft- this app moves Clara around to the places she needs to be since I can rarely drive her. And helps me escape, disappear, bolt and return when driving isn't a smart thing to do.

2) Slack- I use this across clients at work, but WOW this tool is also hella efficient for crisis comms, too. It helps us organize all manner of activities amongst a coterie of deeply caring and committed friends. We have nurses, attorneys, therapists, chefs, Aunties, musicians. They all chime in to help me make decisions muy rapido and nearly any kind of task is deftly handled by this willing crew. We even have a Slack exec in the group marveling at this use case. I, of course, just want to pitch the story, but...

3) Grubhub- we have gotten lots of coupons sent our way for meal delivery, which is really also quite helpful since I do not cook for shit. Doug has always been the house chef, and I the dishwasher- a clean 50/50 arrangement. As Camron can attest, if I try to make something simple as rice, it gets burned. So, this service has been popular. Many thanks to so many of you who have sent this to us.

4) Spotify- Music has filled the rooms because it really puts Doug in a great mood and stimulates many golden memories. In fact, friend Timmmii put together a collaborative playlist where folks can upload tunes that Doug might like. It is HUGE now and packed with some gems. Find it here and have at it. Another really crazy great play list is the one that Guy created - lots of surprises here and more abstract.

5) Amazon- I have held out and not joined this megastore until now. Doug was the problem shopper on this site, never me. Now, I see how valuable it is when you are housebound and need stuff fast but still a reluctant user for all the reasons.

(And no, Eaze doesn't make the list because many beautiful people keep bringing me some strong shit- Chem Dawg and Blue Dream. So, not using this service as often as one might assume.)

Playing hooky recently turned out to be the right call. Actually, my give-a-shit meter for rules of any kind these day is sorta low. And some red hot anger is popping up in the weirdest of places. I had a shouting match and staring contest with a homeless man who was harassing the clerk in a store in the Mission the other day. He called me a "white bitch" and said he would spit on me if I kept yelling. I acknowledged that yes, I am a "white bitch" but he was being really rude and also interrupting the business I was trying to conduct there. Fully irrational move on my part, and could have gotten ugly. So, I am trying not to go out very much in the Big Public anytime soon.

Anyway- back to the tale of the romantic if profligate getaway! Many people know that I love a nice hotel room, and often pack Xmas lights, candles, bottles of vintage Schramsberg, and the Bose when traveling to trick the space out. It seemed only right that Doug and I should steal away and just fucking skip one day of radiation, early in the cycle of treatment, while we could still enjoy that kind of time together. We booked an overly luxe cottage at Nick's Cove in Marshall, ordered in their delicious fare, and basically napped and watched the tide come in and out. It was blissful. Oh! And sat in the giant clawfoot tubs filled with perfumed water from the CBD bath bombs we got at Harborside. Two days quickly turned into three. We had the chance to really talk about some very tough topics, to think a bit about the near future and to just not be bothered by nurses and Kaiser appointments and email so that we could just relax together, un-interrupted. It feels like our days are chopped up into 15 minute increments with med schedules, meals, phone calls, visits, etc. so that kind of elongated time together was a tonic.

And thank you to Catherine for being the scheduling ninja! It is not an easy job, especially amongst close peeps who are not used to being told nothing. If you want to visit, please send an email to visit.klowntown@gmail.com - and we will get to you as soon as makes sense. There do seem to be a lot of guidelines, but that is how it has to be for now. We have 2-3 visitors most days, and that is on top of other appointments and people coming to the house for this thing or that. Sometimes that is just waaaay too much and we need quiet, family time. But mostly we enjoy this kind of stimulation and companionship.  We are starting to limit the time people visit as Doug gets more tired. And yes, radiation and chemo are going well- and his mobility is improving. The hair is starting to fall out. And he is getting more tired yet still quite lucid. We are packing it in because these visits and ensuing conversations are rich and thoughtful and nourishing as much as that Chicken Matzoh Ball Soup that a realtor friend brought over recently. I mean, how often do you have someone serenade you with a ukelele? Especially when it is someone named Chicken John.






14 comments:

  1. Yay for playing Hooky! Can't wait to visit. Much love!!! - Owen and Lucy

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  2. I’m delighted that you got time together, in a beautiful place - excellent priorities. And yeah, I hear you, I got in a shouting match with a guy at a mall, who stepped into my path to try to hard sell, and wasted my precious moments with my girl who needed an 8th grade graduation dress. Wild ride indeed, thanks for posting. Hot Julie

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    1. Thanks for all the lessons you have shared with us already, HJ!!

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  3. Thanks for the updates! I know that things are busy so I'll hang back, but just wanted to send love to you all!

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    1. Many thanks for taking Doug to The Elks Lodge! He filled out his application and I am sure he will be back at that bar with you and Rusty Blazenhoff in no time.

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  4. i hella love you and your family ♥️

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    1. Thx, lady. Always marveled at your sense of humor and lust for life. Hope things are going well with you!

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  5. Just want you to know, I am thinking of you all. Candace, I have a friend who works as a teen counselor in Oakland Kaiser and he has a recommendation for someone to work with there. I can also tell you what to say to get through Kaiser's stupidness to get a counselor right away for her. SO glad you guys got some quality time. Please reach out if you or Doug has any requests of something we can do for you. A favorite candy? so many hugs

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    1. Thanks so much for the recommendation and yes, please please reach out to me with names or advice on navigating Kaiser because the teen grief counseling seems limited and not able to crack the code on it. evilpip at gmail

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  6. Thanks for the continued updates- love by way of Grubhub cert coming, let me know what else you need :) ♥️💗❤️

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    1. Got it and used it for some sushi. Thanks so much, Anders. So thoughtful of you. Hope to see you in walk-in and get extra dusty with the crew.

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  7. We love you guys and think about you nearly every day. Candy, give Doug and Clara a big hug from us. Sending you strength, warmth, and light.

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