Sunday, July 28, 2019

Ritual

Hey there folks- so much is always happening, so a bit behind posting here. And if you are joining us because you saw my posting on Facebook, thanks for jumping on this f'd up ride. This is the right place to get updates on how Doug is faring (and please read the Original Post that was sent via email below on the full story for how we got here).

Tomorrow, we are heading into week three of radiation/chemo and so far, Doug is doing quite well. He even seems to have more energy and is getting around the house sans cane. Mentally, he struggles to understand how he got to this place, why he needs someone to give him baths, and help him get dressed, etc. But he is also able to enjoy the visits with friends and family without falling into a dark hole. I've been duly warned by many that there will be good days and bad days, so expecting things to change with increased fatigue that comes with the treatments, and the hair loss, and who knows what else. Thankfully, he only experienced extreme nausea on the first night of treatment, and we switched meds so that he has had really easy rest ever since.

                                          Doug & his brother Deron out on the deck as the sun also sets

In all truth, we are gonna play hooky from radiation tomorrow. Instead, I am whisking Doug away to one of our favorite places to find tranquility- and that is Marshall, CA. There are many sweet little cottages perched right on Tomales Bay, so you can feel the tides go in and out. We are going there tonight, just the two of us, to enjoy the splendid array of waterlife on the Bay and sit quietly with each other watching the fog spill over the hills on the Inverness side. Also: OYSTERS!  He is quite excited to get away and maybe forget some of this.

And yesterday, we were blessed with a Mohican healing ceremony. One of Doug's colleagues does this frequently, and asked if we would be willing to do this in our house. We invited some close friends, and Deron and Clara were here to participate as well. The ceremony involved earth from our garden, some special tea we all drank, drums and Indian chants and lots of tears. It was intimate and opened us all up to the possibility of the spirit healing the body. The energy shifted dramatically after the ceremony concluded, and we fully believe this kind of ritual has many powers to heal.

                                                    Doug receiving a "rattling" around his body

It cannot be repeated often enough that the level of support from friends and family is making this crazy ride so much more tolerable than it should be. We are creating new rituals to celebrate the times we have together, and the love and warmth that surround us is palpable and sustaining. Thank you all over and over again.



++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

  (This was sent via email on July 7)
Friends-
Coming to you with shitty news, so sit down.

Maybe grab a glass of bourbon on ice. This won't be coated in sugar.

Ok.

Franklin Douglas Fuller has been diagnosed with a high-grade glioma, which is a malignant brain tumor. When the doctor met with us, he said the situation is "grave" - so that is the way we are thinking about it. 

He has been in and out of ICU and the hospital for the past 10 days with a few complications and ER visits along the way.

We hope he comes home tomorrow. Yes, this all happened quite suddenly.

I am starting a blog to post weekly updates to minimize the messaging back and forth on this. See it here: https://www.mrtoadwildride.com/

Three ways to help:
You can schedule a visit here (but if we need to make changes, please understand): https://docs.google.com/spreadsheets/u/1/d/1fgzQzErIDDiGoNcfDivrU5vgDfIczUr5f8WeYWNCJfs/htmlview

If you want to bring over food, and possibly eat with us (but also be willing to deliver it to doorstep), we have set this thing up: https://www.mealtrain.com/trains/v9l3z8


As for treatment, we are looking at starting a standard 6 week run of daily radiation therapy at Kaiser Oakland this week combined with a chemo pill that he can take at home. And tons of cannabis for me and him.

The Background on this FU'd Situation

Only 6 weeks ago, Doug noticed he was missing the exit when driving home and mixing up words and letters. He got an MRI and they instantly found a "dark shadow" on his brain. He went for lots more MRIs, a spinal tap, blood work of all kinds, etc and nothing was conclusive. So, they scheduled a brain biopsy to happen last Friday.

Right before he went in for surgery, his brain started to bleed. That caused lots of pressure to build up, and for his motor functions to be impacted. Short-term memory was affected, he couldn't remember how to put on his shoes, and his right side vision was impaired.

We got ambulanced to Kaiser to be monitored ahead of the biopsy. They conducted the surgery and when the results came back, the tumor was confirmed as malignant and aggressive.

Next week, we agreed to start a 6 week trial of daily radiation therapy + chemo pills he can take at home.

Today, friends cleaned out the computer room top to bottom so we can convert it into a recovery room for Doug.

The best news is that he is still his same, sparkling, hilarious self eager to crack jokes and laugh. He can also take himself to the bathroom and feed himself, too. We think he can walk with a cane, but stairs are a problem. I don't think he will be able to drive again. Reading and writing aren't happening. So, his days as a real estate agent are likely coming to a close.

Clara and I are extremely lucky to have a deep and wide support network of friends and family all around us. People have mobilized to help us with so many things, from researching remedies and coping resources (I am staying away from the dark rat holes on Google) to bringing meals over to going on walks and hikes and to yoga which is so tremendously helpful.

Clara has been a trooper, and is even trying to soothe me. She is super strong and connected to us both and feeling all the emotions. We are seeking counseling for her during this time. Doug and I have counselors already.

Here is an FAQ to help with some of the questions likely swirling in your head. And it's ok to forward this to people who may want to know in case I miss someone.

++++++++++++++++++++++++++++
Doug FAQ
July 7, 2019

What the hell?
Yeah, exactly.

How can I help?
Read this first. It's a bit finger-waggy, but an eye-opening chart that will allow us to connect in a stronger/healthier way around this fucked up situation. This right here is the number one question people like me receive, often many times daily. And it's natural to go there. But, it's tremendously hard to quickly answer and forces me to think on my feet- so trying to post lots of info here. We are extremely #blessed to have a sturdy crew of close peeps assisting in many ways already, but they will need to cycle out at some point.

Ok, cool but I really want and NEED to help!
Of course we can totally use your support in some way or another. And come visit. IRL is the best, but sometimes hard to balance and schedule so just be patient and promise we will make it happen. I want anyone who wants to see him have a chance to get over here.

And how is Clara doing?
She is maturing through this and really bonding with me in a whole new way. And she is sad and scared. Most of you know of the many challenges we have had and the beauty of this situation is how we are showing up so well for each other and connecting. She has lots of friends who provide safe havens for her to retreat and relax, too. She is in summer school for 2-3 hours each day so she has structured time there. And she has many Aunties who are checking in and making sure she has what she needs, as well.

How are you doing?
I have about 4 emotions at once most hours of the day. I love soothing Doug and feeding him and holding hands with him and Clara on his bed. However, staring at the wall is a treat. I've enjoyed using my comms skills to keep the first wave of folks informed and delighted to fucking finally get this note out to more people now that we have real, hard facts to share. I am alternately sad but soaring on adrenaline and sometimes manically busy juggling the mountain of stuff that a fast life change like this requires. Not thinking of the future much so I can be as present as possible. My work peeps have my back in an amazing way, so I will work part time for now.

What is your social media strategy?
Thanks for asking. Purposely staying WAY FAR AWAY from Facebook with this topic for 1,000 reasons. Realize I cannot control what people do out there, but would really appreciate it if folks didn't "vaguebook" about this. Prefer to use email and word of mouth and phone calls and in person experiences to handle this shitty situation. Thanks for the sensitivity.

Are you getting a second opinion?
Absolutely, we are. I have been severely focused on getting paperwork in place to make this happen on Kaiser's dime.

Can you move to UCSF?
Tons of people are pointing in that direction, and we've got 4-5 really strong connections on the inside from the Board level on down who can be called on if we think that is a better route. Unclear.

Can I call Doug on the phone?
Well, he cannot really work his mobile, so you can text me to get to him for a phone conversation.

How long is he going to be with us?
Doctor says maybe 18 months. Miracles do happen. Quality of life is more important to us than chasing an elusive "cure".

So, you aren't gonna pray for him to live forever?
NO HELL NO. Doug and I have talked about this quite a bit. He has lived a very colorful and full life- done MOST things TWICE- and has no looming regrets about bullshit bucket list items. As Teddy Rheingold so sagely said "Life is the Bucket" . Making sure he is having quality time in a comfortable fashion and in his own unique style is what we are focused on the most.

What is making Doug more comfortable right now?
Bad jokes are another form of medicine, because laughter always erupts. Seeing friends, getting foot rubs, and listening to jazz has been really soothing for him.

Will you try cannabis to help with this?
Hell yes. We got doctor's approval to go ahead and try THC & CBD treatments in parallel. We are lucky to be connected to the notable dispensary Harborside and they are going to recommend certain blends that will help with just this kind of cancer- especially with the nausea that comes with radiation.

Thanks for taking all this in, and for the love and concern and care for us as we move through this Wild Ride. Again, watch the blog for updates and understand if I cannot respond to emails/texts as we figure all this out.

Love-
Candace




Monday, July 15, 2019

The next phase: Gamma Rays






                                                   ( ^^ showed up on our front doorstep, courtesy of Robyn, 
                                                     the talented illustrator who helps Doug design his holiday CDs)


Today, Doug got his first radiation treatment. It is a very space age situation. Lasts 7 mins or so. And the side effects are cumulative so he felt ok coming out of it today. He will do this daily, M-F, for 6 weeks and then it should stop.

Tonight, he takes his first chemo pill. We are gripping for the nausea that typically ensues. The chemo pill is daily and could be administered longer than radiation. Both treatments are meant to shrink the tumour, and hopefully improve his vision, motor coordination, and short term memory. We will see!

In all the sadness and trauma associated with a major life shift like this, I am delighted to report that there are MANY silver linings.

  • Enhanced family bonding time. Clara is a CHAMP!
  • Magical, intimate moments with a panoply of visitors
  • Lots of real talk beyond just this cancer bullshit
  • The chance to slow life waaay down to Doug speed, i.e, he noticed a peregrine falcon swooping through the canyon off our deck for first time whilst gazing off in the distance
  • A renewed mission to try and #enjoyeveryday (thanks again, Teddy)
We are totally buffered by our community, which makes it even possible to recognize those silver linings. Just the other day, Doug had one dude and many special ladies surrounding him to help with various things, including a fresh shave.  These are moments to cherish, and we do. Thank you over and over, dear friends. It helps make this situation a lot more bearable and we are extremely grateful. More to come....



Wednesday, July 10, 2019

Home, Super Sweet Home






Hey everyone-
Thanks for checking back in. Learning how to find time to open the laptop, which so far is extremely challenging.

Ok, so we got Doug home yesterday after a lengthy discharge process and loading up on the all meds.
He has a gorgeous remodeled room with a hospital bed to keep his head upright- which helps with the constant pressure there. Lots of chairs and clowny art and a friend even repainted it a warm yellow. You will enjoy being in there with him if you come over.

Gonna keep with the FAQ format since that hopefully makes the major points easier to grok.

Coming to see Doug- new process
We are reconfiguring how we do visitation now- we got in over our head and realized Doug needs more rest time and connection with family time, too. So, emailing us at visit.klowntown@gmail.com us the way to get to our operators standing by. Appreciate your patience with this and I am the ultimate vetter/decider based on a bunch of factors.

How is home?
So great. He is much more lucid today, super conversational, getting good rest. I feel like I have a handle on meds and the pain management for him,  it seems. And Stinker the kitty slept on his bed last night which brought him immense joy and calm.

We had a great nurse friend come over to school us on tracking all the meds and vitals and food intake data so we have a record to hand to friends and family who come over to care for Doug. That made a huge difference- to feel organized. Many serious balls in the air! We are clearing out the clutter/art/toys in our house to make safer, wider pathways for Doug- and that feels great.

What about cancer treatment?
Starting radiation and chemo next week. He needs to go in daily Mon-Fri and we have friends who have volunteered to help with this trip. Expecting nausea and fatigue so gripping for additional changes that will bring into our lives as well.

How are family doing?
Thankfully, Doug's dad comes this weekend to stay with us and be with Doug, and his brother Deron comes the week after. Grateful they can make the time to visit! Hoping my brothers can come later this summer, too.

What do we really need now?
In home care. Without a doubt. The friend network is good for another week then will need something consistent in place. He needs a ton of support (feeding, bathing, walking around, going to appointments, joke telling!), and I need time to do other things. Looking for quality aides for 4-5 hours per day and not sure yet what Kaiser can really do, so if you have good leads, come at me. Best email addy: evilpip at gmail

Thanks for reading. #enjoyeveryday

-Candace






Sunday, July 7, 2019

The Situation

Hi, folks. Thanks for coming here and for your care and concern about Doug.

Choosing this forum over Medium because its easier and no paywall.

This is the place where updates on Doug Fuller's condition will live. Hoping this will be an efficient way to offer updates rather than one-off messages across a bajillion other platforms.

Expect humor, real talk, and other tidbits.

First bit of news is that radiation starts Monday, July 15.
Realizing that a hospital is just as jarring and disorienting as a casino.

-Candace