What a beautiful tribute for a beautiful man with a beautiful heart. We miss you so much, Bredon! Float on!
Node 1,000,002
Hospital Moon
I post here occasionally about my health and cancer treatment. Sometimes may be NSFW. Sometimes serious. Sometimes even funny... I hope.
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Memorial Update
2
Bredon's obituary
Grief flows like water. It fills in the cracks of each moment, ebbing and flowing and flooding. Much like water, grief is an important part of life. Grief is not easy, but it is infused with love and gratitude.
People from many different eras of Bredon's life have been reaching out. Some people had not ever met as Bredon but got to know him through his music, or through the stories of his friends & family. Thank you.
I would like to share Bredon's obituary, which was a joint writing effort between Jenny (Bredon's sister), Rick (Jenny's husband), and myself. Mikey had the idea of including the "subtle blend" lyrics that capture Bredon's devotion to his friends so well.
__________
“I’m way out in space. I’m out there somewhere thinking how small things can be when you get the right perspective. And paradoxically, the smaller things get and the less I worry about things, the more meaningful and real everything becomes…”
People from many different eras of Bredon's life have been reaching out. Some people had not ever met as Bredon but got to know him through his music, or through the stories of his friends & family. Thank you.
I would like to share Bredon's obituary, which was a joint writing effort between Jenny (Bredon's sister), Rick (Jenny's husband), and myself. Mikey had the idea of including the "subtle blend" lyrics that capture Bredon's devotion to his friends so well.
__________
“I’m way out in space. I’m out there somewhere thinking how small things can be when you get the right perspective. And paradoxically, the smaller things get and the less I worry about things, the more meaningful and real everything becomes…”
Bredon Jones (1975-2023) wrote these words as he reflected upon his terminal cancer diagnosis. Bredon spent 47 beautiful years Earth-side, connecting with, collaborating with, and supporting those around him. On January 25, 2023, he passed away at his home on Vashon Island, WA, surrounded by some of his closest people.
Bredon (“rhymes with Sweden”) Jones is lovingly remembered by his wife, Julia Mark; his parents, Gilbert and Linda Jones; his sister, Dr. Jennifer Jones (Rick Dudley); his brother, Wyeth Jones (Alice Chang); and a crew of amazing kids/young adults who call him Uncle Bredon. He is also loved and celebrated by his vast network of close friends. Countless people were lucky to have known Bredon from his time in Chicago, St. Louis, Boston, and–most recently–on Vashon Island.
Born in Madison, WI, Bredon was raised in Glen Ellyn, IL, before moving to LaGrange, IL. There, he met Mikey Naucas, who became his second brother–as well as a bandmate and co-writer. A trend of moving to be geographically closer to Mikey would lead to many great adventures. A verse from one of their songs reflected who Bredon was in all of his close relationships:
When we hug where do I end?
When we hug where do you begin?
Between good friends, it’s not a hard line.
It’s a subtle blend.
Bredon crafted his life around educating, entertaining, and empowering those around him. He was always interested in learning something new to improve his life and the lives of others: a piece of technology, life-hack, song, instrument, or job. (He would encourage you now to Google: “Upside Down Fire”) Bredon found great comfort and wisdom from Stoic philosophers and sci-fi authors, especially as his cancer progressed. He was a seeker of: truth and deep meaning, justice and peace, a good time and a great challenge, friends and more friends, and words and notes that could move a song forward.
Bredon was inquisitive enough to teach himself guitar and computer programming, to start his own companies, and to be a part of several musical groups. The highlight of Bredon’s professional career was joining forces with John Meilink to expand the digital marketing side of John’s family company, 1905 New Media. Together, they grew the web side of the St. Louis-based business from a handful of employees to the thriving mid-sized company it is today. Bredon was a beloved team manager and Vice President, and an award in his name was created at 1905 New Media.
Bredon’s musical projects included: Last To Show First To Go, Small City Mayor, Fuzzy Futures, Jakals, and Slow Dress. Many of those bands included his long-time partner Miriam Keller who remained a dear friend after they separated. Recordings and memories from these bands and duos live on. We love Bredon’s clever and insightful songwriting about politics, society, technology, and relationships, as well as his lyrical guitar lines, impressive vocal range, and synth expertise.
Bredon was diagnosed with a rare illness, advanced appendiceal cancer, around the start of the pandemic. As his prognosis window narrowed, Bredon and his wife Julia began a new adventure. They moved from St. Louis to Vashon Island near Seattle, visiting with friends and family as they road-tripped. Vashon was special to Bredon for many reasons–most notably because Mikey, Mikey’s partner Holly, and their super cool kid Ruby live there. Bredon spent his final several months enjoying time with friends and family on the island, often hiking the Fisher Pond Trail and pausing to meditate by the water. Bredon and Julia were grateful for the amazing end-of-life care at the Fred Hutchinson Cancer Center in Seattle, as well as the community that welcomed them on Vashon.
One of the most beautiful things about Bredon was his ability to connect and relate to so many unique, incredible people. He surrounded himself with musicians, singers, songwriters, scientists, refugee re-homers, environmentalists, curious souls with kind hearts, architects, fabric designers, teachers, parents, counselors, hairdressers, and business owners–to name a few. Bredon saw the best in all of us. And he always wanted to share the gift of you as a person with the other people he held dear in his life. He would say, “I really think you’d like so-and-so; they are such an amazing person.” Bredon was not afraid to be intimate or vulnerable with people. He could transform something just with a few words into something “greater than.”
Everyone who was in Bredon’s orbit should know how much they starred in his life and how he would reflect the light he saw in them…making the world a brighter, more beautiful place to be.
On February 6th, Bredon’s family and close friends gathered at Return Home (a “terramation” funeral home in Auburn, WA) to begin the process of returning Bredon’s body to the Earth. In the words of Ursula K. LeGuin: “What goes too long unchanged destroys itself. The forest is forever because it dies and dies and so lives.”
Bredon is still out there, on bredoninspace.com. He wrote this as a message to us:
“If you can figure out how to send messages back to me, you can help me find my way around a song or two. We can write together. Maybe we’ll make something beautiful together. Maybe you’ll just listen to my messages and simply enjoy them for what they are.
Look up in the night sky on a clear night and you might catch a glimpse of the light of the sun reflecting off the hull of my ship as I pass within communications range. When you see it, check your messages.”
If you’d like to honor Bredon, we recommend that you do one or more of the following:
- sing a little song (or a big song)
- reach out to a friend
- thank somebody
- go for a walk
- take a deep breath
- listen carefully
- add garlic
- do something for your future self
- dance!
Donations in Bredon Jones’s name may be made to a cause that personally inspires you, or to the Appendix Cancer Pseudomyxoma Peritonei Research Center (ACPMP.org).
https://www.mykeeper.com/profile/BredonJones/
https://www.mykeeper.com/profile/BredonJones/
etphoneh0me
about 1 year ago
wyeth
about 1 year ago
Feeling grateful to be able to come back and read this
lovingly written obituary again. See you later Bredon
lovingly written obituary again. See you later Bredon
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537324
Memorial Update
0
Monday Feb. 6 details + reminder
Hi, everyone.
I'm sharing a few reminders about the events on Monday, Feb. 6th. Please note that the timezone is Pacific Time. If you have any questions please email me: juliacmark@gmail.com
I'm sharing a few reminders about the events on Monday, Feb. 6th. Please note that the timezone is Pacific Time. If you have any questions please email me: juliacmark@gmail.com
Zoom link for Monday's ceremony:
General schedule:
10:15am PT
We will begin gathering in-person. Friends & family on Zoom will be able to view a slideshow of photos, and chat amongst themselves.
11:00am PT
The in-person contingent (~16 people) at Return Home will begin sharing their comments about Bredon, if desired.
Family & friends on Zoom will then have an opportunity to share some words, if they would like. My Dad (Charlie Mark) will be helping to organize. Send him a message in the Zoom chat if you'd like to share aloud.
Family & friends on Zoom will then have an opportunity to share some words, if they would like. My Dad (Charlie Mark) will be helping to organize. Send him a message in the Zoom chat if you'd like to share aloud.
Noon-ish
Bredon's mom, Linda Jones, will lead a prayer to complete the committal ceremony.
We will finish the process of adding notes and other compostable items to Bredon's vessel, and Bredon's vessel will be closed.
We will finish the process of adding notes and other compostable items to Bredon's vessel, and Bredon's vessel will be closed.
12:15pm PT
Ceremony ends.
This page on Return Home's memorial platform has details as well: https://returnhome.mykeeper.com/event/bredon-return-home-vessel-ceremony/
This page on Return Home's memorial platform has details as well: https://returnhome.mykeeper.com/event/bredon-return-home-vessel-ceremony/
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537324
Memorial Update
0
Return Home, RSVPs, etc.
Hi everyone,
I know there have been multiple channels communication, so you probably have already received a similar update via email. Nevertheless, I want to share Bredon's "Return Home" profile publicly on his website here, in case some folks are looking to Bredon In Space for details.
I know there have been multiple channels communication, so you probably have already received a similar update via email. Nevertheless, I want to share Bredon's "Return Home" profile publicly on his website here, in case some folks are looking to Bredon In Space for details.
RSVP for FEb. 6 EVENTS:
https://www.mykeeper.com/events/BredonJones/
Please note that the lunch is now being held in Kent (nearby to Return Home) instead of Tacoma.
Please note that the lunch is now being held in Kent (nearby to Return Home) instead of Tacoma.
Bredon's main profile:
https://www.mykeeper.com/profile/BredonJones/
Feel free to post comments here if you'd like. Reminder that you can send letters for Bredon's vessel to juliacmark@gmail.com (more details in the previous post!)
Please don't feel badly if you are unable to attend the memorial in-person on Monday. Now that Bredon is not contained to one location, I feel that we can honor him from across the space-time continuum - here, there, everywhere.
Much love,
Julia
Feel free to post comments here if you'd like. Reminder that you can send letters for Bredon's vessel to juliacmark@gmail.com (more details in the previous post!)
Please don't feel badly if you are unable to attend the memorial in-person on Monday. Now that Bredon is not contained to one location, I feel that we can honor him from across the space-time continuum - here, there, everywhere.
Much love,
Julia
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537324
Memorial Update
0
Ceremony Feb. 6 @ Return Home 10:15am PT
Hi, everyone. It's been a whirlwind.
Bredon often described himself as "non-linear." Like Bredon, the experience of mourning, remembering, and celebrating him is multi-dimensional. Whether or not you can attend the more formal events on Feb. 6th and over the Summer, there will always be opportunities to cherish Bredon.
Bredon - Return Home Ceremony
We will be having an in-person ceremony akin to a wake and committal ceremony.
WHEN: Monday, February 6th from 10:15am-12:15pm
WHERE: Return Home, 4146 B Pl NW, Auburn, WA 98001
ZOOM MEET LINK:
Long distance Friends & Family can join us via Zoom link: https://tinyurl.com/bredonreturnhome
Ceremony Details
During the ceremony, Bredon's body will be in a vessel of straw and alfalfa. Letters, flowers, or anything compostable may be placed into the vessel alongside him. There will be an opportunity for words to be shared aloud: memories, musings, appreciations, prayers, songs, or whatever moves you.
At the end of the ceremony, the vessel containing Bredon's body will be transported to another part of the facility. Over the next few months, Bredon will become part of 250 lbs. of gardening soil.
If you'd like to learn more about Return Home the "terramation"/composting facility where Bredon's body is currently located, I recommend these links:
- https://www.theverge.com/c/23307867/human-composting-process-return-home
- https://returnhome.com/
Messages for Bredon:
If you would like to add a message to Bredon's vessel, please email me a document to print at juliacmark@gmail.com. I will respond to confirm receipt of your message.
If you would prefer to send a physical letter in the mail, please send it to:
Bredon Jones c/o Julia Mark
16617 115th Ave. SW
Vashon, WA 98070
Bredon Jones c/o Julia Mark
16617 115th Ave. SW
Vashon, WA 98070
I recommend emailing me a copy of what you are sending in the mail, just in case your letter doesn't arrive in time for the ceremony. Our mail delivery can be notoriously slow here!
Summer Event to Follow
This Summer in the midwest (St. Louis, MO or Morris, IL) we plan to have an event celebrating Bredon. Details are TBD.
Sending lots of love,
Julia
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Health Update
12
Bredon goes to space
To our dear friends and family,
Bredon passed away this afternoon. We are shocked by how quickly it all unfolded, and grateful that Bredon did not have to suffer at the very end.
The nurse, Krystal, was able to help Bredon manage his pain after about an hour and a half with a cocktail of pain meds, anti-nausea meds, and sedatives. We decided - along with Bredon - that it made sense to prioritize comfort over mental alertness. We are very grateful for the hospice care Bredon received. After about five hours of intense pain, the doses of medication took effect and Bredon’s pain finally began to ease.
Over the past several days, Bredon had been hallucinating slightly - seeing things in his field of view, muttering in his sleep, and hearing things occasionally. As the medication set in, Bredon seemed to untether from reality. At one point, he asked us what state he was in and where he was, though for the most part his mutterings were not coherent to us. Bredon occasionally smiled.
Eventually, Bredon settled into a deeper sleep. He was making some snoring-like noises but did not seem to have an outward physical response to us. Linda, Gil, and I took turns sitting with Bredon upstairs in our bedroom. I gave him his next round of medication through a port.
Mikey and Teryn arrived to spend some time with Bredon, too. Mikey kindly made a snack for me, and I planned to go outside to eat it on the deck (still on covid protocol here). I noticed our neighbors’ dog was barking at our door, which is unusual for her. I hung out with the doggo on our deck and enjoyed the fresh air.
A few minutes later, the hospice aide Paula arrived with some supplies. As she was suiting up in Personal Protective Equipment, Gil stepped outside and said, “We think that Bredon stopped breathing”.
Paula and I hurried upstairs to see what was happening. Paula listened and confirmed that his heart had stopped. It was a surreal moment. Linda, Gil, Mikey, Teryn, and I gathered around and cried. We called the hospice nurse Krystal.
The nurses (Paula and Krystal) and I got Bredon into a flat position and cleaned him, and gave him some sweatpants to wear (the ones that Bredon’s friend Carolyn had custom-made for him during chemo times).
It has been a whirlwind of emotions and communications. Holly and Ruby (her & Mikey’s daughter) joined the household, and our neighbors/landlords dropped off food from their restaurant, Pop Pop. Mikey went upstairs with Bredon’s acoustic guitar and played some songs for his friend/brother.
Leading up to this time, Bredon said to me that he wanted to be remembered “as he used to be” - as in, before he got really sick. Tonight, I am holding close to my heart all of the iterations of Bredon that we - his friends and family - had the privilege of loving. I cannot capture the gratitude I have for the time I was able to spend with Bredon, my love.
We will be updating you again soon.
Safe travels into space, Bredon.
♥julia
etphoneh0me
about 1 year ago
So much love to you and Breden. I feel so incredibly blessed to have had you both in my life.
Ground control, to Major Tom. Take care of our Breden for us. Godspeed.
Ground control, to Major Tom. Take care of our Breden for us. Godspeed.
andy_p
about 1 year ago
My heart goes out to all of you. Godspeed you on your journey, Bredon!
wyeth
about 1 year ago
We talked about Bredon last night after he passed. He valued his friends and forged his own path with the freedom of the youngest child. I remember him as my younger brother,
as my best, first, and sometimes only friend. Now in death he's my older brother, teaching me. Bredon you have never been far from our hearts. Rest in space brother.
as my best, first, and sometimes only friend. Now in death he's my older brother, teaching me. Bredon you have never been far from our hearts. Rest in space brother.
collapsing_cosmic
about 1 year ago
I spent a lot of time last night on this website, listening to my favorite songs (back to the sea!) and reading and re-reading your bio. (If you haven't found it yet, its... beautiful and oh so Bredon).
Thank you for always helping us to see that "the smaller things get, the less there is to worry about things, and the more meaningful and real everything becomes." You've shared your values to the end, a true mentor of what it means to live.
I'll be looking into the sky, to catch that glimpse of your ship. Travel safe friend. You are not alone. And you've left us and bonded us together, as a community and a family. Thank you.
Julia, we remain as ever, here with you.
Thank you for always helping us to see that "the smaller things get, the less there is to worry about things, and the more meaningful and real everything becomes." You've shared your values to the end, a true mentor of what it means to live.
I'll be looking into the sky, to catch that glimpse of your ship. Travel safe friend. You are not alone. And you've left us and bonded us together, as a community and a family. Thank you.
Julia, we remain as ever, here with you.
juliestanley
about 1 year ago
I will only partly honor Bredon’s wish to be remembered as he was. Certainly I will never forget all the wonderful times, including the wee hours of August 7, 1999 involving tackling, bushes, and ladies lingerie (I’m looking over the top of my glasses at YOU, WYETH). I will also remember him on his journey with cancer, which amplified and illuminated his already outstanding character. Now, Bredon is now an inspiration.
wyeth
about 1 year ago
Age (or COVID) has taken that memory from me Julie, but it sounds like we were all having fun 🤣🤣
juliestanley
about 1 year ago
His bachelor party on the eve of the wedding and how he was returned to the apartment in the wee hours. I'm pretty sure you were a part of that.
juliestanley
about 1 year ago
If not, I've got a story to tell. Much love being sent to you and your family and Julia.
more_sunbeam
about 1 year ago
I miss you already, Bredon.
dawn_intelligent
about 1 year ago
Same here ….
ry.an_alpha
about 1 year ago
Anyone that finds themselves in the STL orbit tomorrow is welcome to gather at our place. Coordinates: 2838 Magnolia Ave. STL, MO, Turtle Island, Earth, Milky Way, Universe. There is a 100% chance of viewing Bredon's light beam tomorrow night, though given the realities of light speed and space/time travel it may seem imperceptible to our mere human senses, please just trust that he is indeed present despite our biological limitations.
ry.an_alpha
about 1 year ago
Our mission will commence at 1800hours. (that's 6pm for the non-astronauts).
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Health Update
7
Wednesday, Jan. 25
I'm writing this entry as the hospice nurse gets medication to Bredon. The first full day of hospice has been more eventful than we would have liked.
Bredon awoke early this morning (around 5 am) in extreme pain with occasional vomiting, and we have been troubleshooting ever since. There are many different forms of medications for pain & nausea and many ways of administering them, so it's just a matter of finding the right dosages and techniques. It is obviously very difficult to see Bredon suffering, and I am relieved that Krystal (the main hospice nurse assigned to Bredon) lives on Vashon and is here now. She is calm, communicative, and on the case.
Bredon's parents arrived a few hours ago and have been here for support. Gil picked up some meds at the pharmacy that hospice had ordered yesterday, and Linda did the dishes that had piled up. It's amazing how having these small tasks checked off makes a huge difference!
I'll report back soon, hopefully with some better news about Bredon's pain situation.
♥ julia
Bredon awoke early this morning (around 5 am) in extreme pain with occasional vomiting, and we have been troubleshooting ever since. There are many different forms of medications for pain & nausea and many ways of administering them, so it's just a matter of finding the right dosages and techniques. It is obviously very difficult to see Bredon suffering, and I am relieved that Krystal (the main hospice nurse assigned to Bredon) lives on Vashon and is here now. She is calm, communicative, and on the case.
Bredon's parents arrived a few hours ago and have been here for support. Gil picked up some meds at the pharmacy that hospice had ordered yesterday, and Linda did the dishes that had piled up. It's amazing how having these small tasks checked off makes a huge difference!
I'll report back soon, hopefully with some better news about Bredon's pain situation.
♥ julia
oneeyedman
about 1 year ago
Thanks for the update Julia <3 sending love from Boston
3bix
about 1 year ago
♥
archable
about 1 year ago
Sending you all the love! Hope you are able to find a way to manage this pain <3.
mollusk_nuts
about 1 year ago
Big love to you both!
rocinante
about 1 year ago
Sending lots of love from Columbus! <3 Chris and Laura
etphoneh0me
about 1 year ago
If you need me, call me… no matter where you are…no matter how far. (But seriously, call if you need anything!)
But truly,
May our love pouring out act as a balm to Breden and your hearts. Here is hoping the pain can subside.
But truly,
May our love pouring out act as a balm to Breden and your hearts. Here is hoping the pain can subside.
julia
about 1 year ago
Updating to say that Bredon's pain has been managed. He is asleep.
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Health Update
5
Monday night update
Hello! Here's an update on what's going on with Bredon:
The latest blockage that's been affecting Bredon is loosening up, finally. After an up-and-down week, we decided to go into the Fred Hutch clinic for hydration on Sunday and Monday. They also gave him a boost of potassium on Sunday since his level was low. Thankfully the clinic was able to squeeze us into the schedule. Bredon has remained asymptomatic for covid (yay!) and we have finished our initial 5-day quarantine.
At the clinic today, we were able to chat with Dr. Cohen (the oncologist) and Jim (the PA who works directly with Dr. Cohen). They have been insightful and supportive throughout Bredon's treatment. We will continue to work with them as we transition to hospice. We are meeting with a nurse tomorrow (Tuesday) at home to officially enroll in hospice. I'll share more details later this week about that.
Bredon is very depleted, both physically and emotionally. Every day is a little different, and within each day there are ups and downs. Dr. Cohen encouraged us to focus on the here and now, and put our energy toward connecting with friends & family when Bredon is able.
We love and appreciate you!
♡julia
The latest blockage that's been affecting Bredon is loosening up, finally. After an up-and-down week, we decided to go into the Fred Hutch clinic for hydration on Sunday and Monday. They also gave him a boost of potassium on Sunday since his level was low. Thankfully the clinic was able to squeeze us into the schedule. Bredon has remained asymptomatic for covid (yay!) and we have finished our initial 5-day quarantine.
At the clinic today, we were able to chat with Dr. Cohen (the oncologist) and Jim (the PA who works directly with Dr. Cohen). They have been insightful and supportive throughout Bredon's treatment. We will continue to work with them as we transition to hospice. We are meeting with a nurse tomorrow (Tuesday) at home to officially enroll in hospice. I'll share more details later this week about that.
Bredon is very depleted, both physically and emotionally. Every day is a little different, and within each day there are ups and downs. Dr. Cohen encouraged us to focus on the here and now, and put our energy toward connecting with friends & family when Bredon is able.
We love and appreciate you!
♡julia
wyeth
about 1 year ago
Thank you for the detailed update. At least COVID is pulling its punches a bit. I hope Bredon knows we are all in his corner. ❤❤❤
3bix
about 1 year ago
Sending lots of of love to you and Bredon. <3 <3 <3
oneeyedman
about 1 year ago
Sending love from Boston <3 <3 <3 (that's me, Rosie, and Julie)
andy_p
about 1 year ago
Hugs, Bredon & Julia!
etphoneh0me
about 1 year ago
So so so much love sent your way. Anything you need, don’t hesitate to reach out. Anything.
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Health Update
2
Covid in the house
Well, it finally got us. I know you aren't here for Julia health updates but, long story short: I started feeling sick on Monday and was testing positive for Covid by Tuesday morning. I've been taking Paxlovid and am doing better today, though still leading a cat-like existence of napping, seeking warmth, drinking water, and occasionally emerging for snacks. Wednesday afternoon, Bredon also tested positive - a faint line on the antigen test - but so far isn't experience Covid-y symptoms.
Bredon *is* unfortunately dealing with blockage-y symptoms. The blockage has not escalated to the point of needing clinical attention, but it's stubborn. Bredon is managing the blockage at home with a variety of medications (mainly steroids and pain meds).
Moral of the story: avoid our house at all costs!
When the covid comet hit, we had just wrapped up a busy and wonderful week of hanging with family. The Vashon visitors included: Bredon's sister Jenny and her second-oldest kiddo Mac; my aunts and uncles from Boulder & Chicago (Suzanne, Corey, Josh, Pam); my cousin Naomi; and Bredon's brother Wyeth, sister-in-law Alice, and their son Luke.
Bredon is eager to spend time with loved ones, but socializing is physically draining for him. We are learning how to navigate that. I think we struck a good balance this past week, and it was really special to have so many family folks here! Thankfully no one else seems to have gotten covid as a souvenir from their visit. Fingers crossed it stays that way!
We'll be chatting with a provider from Fred Hutch on Thursday morning about whether Bredon should also start on Paxlovid. They are double-checking drug interactions, among other things.
Sending socially-distanced and masked air-hugs to you all!
♡julia
P.S. Many thanks to our island support crew! Friends have reached out to offer food & supplies, and Gil dropped off medicine! Linda [Jones] had recently made a batch of her famous "atomic soup" , which has been a most excellent and nourishing meal!
Bredon *is* unfortunately dealing with blockage-y symptoms. The blockage has not escalated to the point of needing clinical attention, but it's stubborn. Bredon is managing the blockage at home with a variety of medications (mainly steroids and pain meds).
Moral of the story: avoid our house at all costs!
When the covid comet hit, we had just wrapped up a busy and wonderful week of hanging with family. The Vashon visitors included: Bredon's sister Jenny and her second-oldest kiddo Mac; my aunts and uncles from Boulder & Chicago (Suzanne, Corey, Josh, Pam); my cousin Naomi; and Bredon's brother Wyeth, sister-in-law Alice, and their son Luke.
Bredon is eager to spend time with loved ones, but socializing is physically draining for him. We are learning how to navigate that. I think we struck a good balance this past week, and it was really special to have so many family folks here! Thankfully no one else seems to have gotten covid as a souvenir from their visit. Fingers crossed it stays that way!
We'll be chatting with a provider from Fred Hutch on Thursday morning about whether Bredon should also start on Paxlovid. They are double-checking drug interactions, among other things.
Sending socially-distanced and masked air-hugs to you all!
♡julia
P.S. Many thanks to our island support crew! Friends have reached out to offer food & supplies, and Gil dropped off medicine! Linda [Jones] had recently made a batch of her famous "atomic soup" , which has been a most excellent and nourishing meal!
wyeth
about 1 year ago
Sending healing vibes to BOTH of you this time! Gotta double the power on the vibe antenna!
julia
about 1 year ago
Thanks,
wyeth
!!
wyeth
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Treatment Update
3
Post-holiday Update
Hello, fellow space travelers. It's been a while since we've posted here, so I want to update you all on the latest.
The headlines:
-
Recovery from the hospitalization in November has been very gradual.
Bredon's energy is quite variable, and every day is a little different. Like any good astronaut, Bredon has been diligently intaking calories and has even gained some weight back. The doctors have underscored that, at this stage of cancer, it is difficult to maintain body fat and muscle mass. As a result, Bredon remains a string bean - though a quite handsome string bean, if I may so myself.
-
So far, the stent seems to be doing its job!
Bredon's gut still gets obstructed, which is unavoidable, but so far his body has been able to redirect traffic toward the new pathway created by the stent.
-
There was one main scare when Bredon started having extended spasmodic pain in his gut.
We were on our way to the airport to meet our friends in Kauai, but did a 180 and headed to the clinic once Bredon started throwing up. Thankfully, a few hours of hydration and IV meds made a huge difference. The blockage resolved and we avoided a hospitalization. Another point for the stent (and many points for the attentive staff at Fred Hutch)! We rebooked our outgoing for flight and...
-
We had a lovely stay in Kauai thanks to our gracious hosts Ryan & Nicole (two dear friends from St. Louis)! We shared a sweet condo with fellow Vashonites (Vashonistas?) Mikey & Holly and their daughter Ruby. Although our original trip was shortened from 2 weeks, down to 1 week, and then to 4.5-ish days, we were thrilled to enjoy beautiful warm, sunny days with some of our favorite people! We are now back on our island, which is also beautiful. I wouldn't recommend swimming here though.
- Another silver lining of shortening our Kauai trip was that we got to spend Christmas (aka sister Jenny's birthday) with Bredon's parents here on Vashon. Our friends Teryn & Sofie joined for a low-key Christmas dinner. On NYE, Bredon and I stayed in and watched a movie. Real party animals. Watch out!
-
The biggest treatment update is that we've decided to stop chemo, due to the physical costs outweighing the questionable benefits.
Our favorite PA, Jim, always reminds us that, within reason, "no decision is final". If things change, we can always decide to pursue treatment again. But for now we will focus on more palliative measures. Words like "palliative care" and "hospice" have a lot of baggage associated with them. The main goal of palliative care is to manage symptoms and maximize comfort. Studies show that people who go into hospice sooner live longer than those who wait until the last moment.
Anyway, that's all the news that's fit to fly through space-time. We are sending lots of love to you all. Thanks for reading!
♡ Julia
Healing_thoughts
over 1 year ago
So great to know that you and Bredon had a wonderful trip, Julia ❤️!! Can’t wait to see you both soon 😘😘😘
etphoneh0me
over 1 year ago
Cheers to string beans, stents, and sunshine! Love you both so much. P3 4 lyfe!
wyeth
over 1 year ago
Love to see my ohana experiencing the Hawaii weather
..
..
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Health Update
2
Week of Dec. 11th
It's been a little over a week since Bredon left the hospital. The stent continues to prevent obstructions! Bredon is still experiencing fatigue and discomfort, and every day is a little different. Overall, we are incredibly relieved that he's not experiencing a blockage. We are continuing to talk with the many docs, PAs, nurses, and social workers at the hospital who help us to manage All Of The Things around Bredon's treatment. The Fred Hutch clinic has an amazing system of health professionals.
Bredon's appetite is limited, and he's been advised to eat calorie-dense foods. I'm considering asking Annie's Mac & Cheese to sponsor this website, as we are likely one of their top customers in Washington State.
We've enjoyed a steady stream of visitors to the island. This past week we put our friends & family to work at the apartment, installing storage for our many instrument cables, constructing a shelf near the stove, rearranging the music space, washing dishes (a Sisyphean task), and more! If you're visiting in the next several weeks, don't worry - we have plenty of other projects around the house on our list ;-)
As you may have noticed, Bredon may be unable to respond directly to messages, given his fatigued state. But please know that he appreciates all of your love and thoughtfulness. I am in awe of the kindness that surrounds us.
♡ julia
oneeyedman
over 1 year ago
Yay stent! eating a calorie dense meal in your honor 🤘🏻
wyeth
over 1 year ago
what a relief to hear the repair job worked so well!
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Hospital Update
3
Home from the hospital
Tuesday update:
Bredon got home on Sunday night. He is no longer on TPN so we are focused on high calorie foods/drinks that go down easy. The Fred Hutch cancer center has a great team of nutritionists that check in frequently, which we appreciate.
After feeling energized on Saturday by news of the successful procedure and a few solid days of TPN, Bredon is back to feeling quite depleted. It will take his body some time to adjust to the new traffic pattern in his gut that was created by the stent.
We are grateful to have some dear friends visiting the island, and are looking forward to a cozy week at home.
Hugs,
Julia
Bredon got home on Sunday night. He is no longer on TPN so we are focused on high calorie foods/drinks that go down easy. The Fred Hutch cancer center has a great team of nutritionists that check in frequently, which we appreciate.
After feeling energized on Saturday by news of the successful procedure and a few solid days of TPN, Bredon is back to feeling quite depleted. It will take his body some time to adjust to the new traffic pattern in his gut that was created by the stent.
We are grateful to have some dear friends visiting the island, and are looking forward to a cozy week at home.
Hugs,
Julia
julia
over 1 year ago
Also, this week's Pun Award goes to
etphoneh0me
for her recent comments of "STENTsational" and "manifiSTENT". Congratulations, Erika. Pun-omenal work.
etphoneh0me
wyeth
over 1 year ago
"Depleted" - seems a very apt word. Strong Baby needs to be repleted!
ry.an_alpha
over 1 year ago
Bodies remapping traffic patterns love cozy time, rest up yall. Great to hear you're back home.
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
nodnagrom
over 1 year ago
Sending our love and some white light
Hospital Update
7
Friday updates
The big news is that the stent procedure is being planned for 3pm PT today (December 2). We will keep you in the loop.
Also, TPN was started last night around 8:30pm, and the team is adding in extra electrolytes as needed. Bredon is feeling physically depleted, but we are relieved that the GI surgery team has confirmed the stent procedure for today.
Much love from Hospital Moon!
Also, TPN was started last night around 8:30pm, and the team is adding in extra electrolytes as needed. Bredon is feeling physically depleted, but we are relieved that the GI surgery team has confirmed the stent procedure for today.
Much love from Hospital Moon!
etphoneh0me
over 1 year ago
STENTSATIONAL NEWS!
3bix
over 1 year ago
❤️
archable
over 1 year ago
Good news!! All the love! <3
rocinante
over 1 year ago
Hooray, this is fantastic news! We're so glad you're on the schedule. Sending love and positive thoughts to you both! - Chris and Laura
julia
over 1 year ago
**UPDATE 4:49pm PT** Procedure went very well "unofficially officially" according to the nurse!! We will see Bredon soon.
Healing_thoughts
over 1 year ago
Awesome news 👍🏻👍🏻👍🏻!!! Hope it provides much needed relief for Bredon 🙏🏻🙏🏻🙏🏻. Hope you get some rest too, Julia ❤️❤️❤️
etphoneh0me
over 1 year ago
MAGNIFISTENT NEWS! ❤️
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Hospital Update
9
Monday night update ("The Flourish")
**UPDATES IN COMMENTS BELOW**
Hi, everyone! Here are the hospital headlines from Monday, Nov. 28th:
Hi, everyone! Here are the hospital headlines from Monday, Nov. 28th:
-
Total parenteral nutrition (TPN) is postponed until further notice.
The pharmacy needed more time to concoct the mixture. More importantly, the docs explained that TPN can be high-risk and is ineffective over short periods. They would like to avoid TPN if there’s a chance that Bredon’s blockage can be relieved via a stent. Speaking of which…
-
The stent bypass procedure is on the docket!
We hope to find out on Tuesday exactly when the procedure will occur. It would be awesome if it happened sooner (Wednesday) rather than later (Friday). Bredon is still in a lot of discomfort, and the stent could provide a huge amount of physical & mental relief. In the scheme of things, this would be a relatively low-risk/high-reward procedure. So, I’m personally stoked about the stent idea. Bredon is game as well.
-
Bredon has a new move that he calls, “The Flourish”.
As I understand it, The Flourish a special way of leaning over the toilet that results in easy-breezy emesis (vomiting).
It’s is the dance move you hope to never learn. It’s the spice of life that, on second thought, is maybe a bit too spicy. And yet, if you find yourself in a very particular situation - such as being hospitalized for multiple small bowel obstructions due to tumors pressing in on your GI tract - you may find that all you need to do is add is a little Flourish!
Thank you all for your love and support and well-wishes. We appreciate you. More updates soon!
Healing_thoughts
over 1 year ago
So glad to hear about the stent! Really rooting for Wednesday 🙏🏻🙏🏻🙏🏻!!! Hanging in there Bredon and Julia ❤️❤️❤️, sending lots of love and comfort 💗💗💗
saturn_dog
over 1 year ago
Love you two so much. I'm rooting for Wednesday too!!
wyeth
over 1 year ago
Let's hope he can "Bypass" the "Flourish" .. "ASAP"
etphoneh0me
over 1 year ago
+1 to
wyeth
Sending the best vibes out into the universe for Wednesday relief…. An exceptional P3 alternative
wyeth
Sending the best vibes out into the universe for Wednesday relief…. An exceptional P3 alternative
collapsing_cosmic
over 1 year ago
Yes yes yes! Love you all and sending positive thoughts today. And Arlie, stay focused on talking to all those machines in the hospital so they know what's up.
julia
over 1 year ago
**UPDATE: WEDNESDAY NOV. 30 @ 7:35pm PT**
Today was a day of waiting. Long story short: still no definitive day for the stent procedure, but word on the street (er, hospital hallway) is: procedure still tentatively planned for Thursday or Friday. GI surgery scheduling gets tricky here as they often have last-minute emergencies to handle.
Bredon was feeling a bit better this morning. He even had a bowel movement (!!) which was incredibly exciting news for us and the medical staff. If stuff is coming out, that indicates that some material is getting through the blockage sites, which means that the blockages are loosening up. But within a few hours, Bredon was back to feeling bad and throwing up. It's a non-linear situation here.
Stay tuned for more Bowel Movement Ballads and Emesis Essays here on Hospital Moon.
Today was a day of waiting. Long story short: still no definitive day for the stent procedure, but word on the street (er, hospital hallway) is: procedure still tentatively planned for Thursday or Friday. GI surgery scheduling gets tricky here as they often have last-minute emergencies to handle.
Bredon was feeling a bit better this morning. He even had a bowel movement (!!) which was incredibly exciting news for us and the medical staff. If stuff is coming out, that indicates that some material is getting through the blockage sites, which means that the blockages are loosening up. But within a few hours, Bredon was back to feeling bad and throwing up. It's a non-linear situation here.
Stay tuned for more Bowel Movement Ballads and Emesis Essays here on Hospital Moon.
wyeth
over 1 year ago
Slip one of the docs a Benjamin
Healing_thoughts
over 1 year ago
That’s very encouraging news ❤️. Hoping for more movements tomorrow 🙏🏻🙏🏻🙏🏻
julia
over 1 year ago
**UPDATE: THURSDAY DEC. 1 @ 5:50pm PT**
Another day of waiting. Long story short: TPN starting tonight, procedure happening....sometime??! Bredon is an "add on" which means that if there is an unexpected break in the surgery schedule, they will fit Bredon in. Unfortunately, they are booking 2 weeks out for surgery so this is the most efficient option. More tomorrow...
Another day of waiting. Long story short: TPN starting tonight, procedure happening....sometime??! Bredon is an "add on" which means that if there is an unexpected break in the surgery schedule, they will fit Bredon in. Unfortunately, they are booking 2 weeks out for surgery so this is the most efficient option. More tomorrow...
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Hospital Update
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7
Hospital Stay #3 - update from Julia
Hi, everyone.
Julia here. This my first time creating a node/announcement on Bredon’s website. I hope this message successfully travels through space-time and arrives at your device. Arlie - the AI represented by a green dot that you may have seen floating around the site - is busy communicating with the various machines at the hospital so they've been a bit unhelpful. (No offense, Arlie…)
Julia here. This my first time creating a node/announcement on Bredon’s website. I hope this message successfully travels through space-time and arrives at your device. Arlie - the AI represented by a green dot that you may have seen floating around the site - is busy communicating with the various machines at the hospital so they've been a bit unhelpful. (No offense, Arlie…)
I am putting a lot of detail in here but...
I will emphasize the main points, like this!
I will emphasize the main points, like this!
As you may already know, Bredon was in the hospital for a week in September due to small bowel obstructions and then again for a handful of days in October.
Bredon is back in the hospital again as of Saturday night (November 26th), though he has been dealing with this latest bout of small bowel obstructions - SBOs - outside of the hospital for almost two weeks.
These SBOs are caused by tumors pressing in on the digestive tract in multiple areas and is a complication commonly associated with his type of cancer.
Bredon is back in the hospital again as of Saturday night (November 26th), though he has been dealing with this latest bout of small bowel obstructions - SBOs - outside of the hospital for almost two weeks.
These SBOs are caused by tumors pressing in on the digestive tract in multiple areas and is a complication commonly associated with his type of cancer.
Recap of the last week+ below. *If you don’t like reading about stuff exiting from the body, please skim ahead!*
- Thursday Nov. 17: SBOs flare up again (symptoms typically include: lingering feeling of fullness in the belly, bloating, spasmodic pain, nausea, and eventually vomiting)
- The plan is usually to manage SBOs at home with steroids, pain meds, and anti-nausea meds. Sometimes the SBOs will clear up on their own with some time.
Once Bredon starts throwing up, however, it becomes difficult to keep down medication and challenging to stay hydrated. That’s when we head to the clinic for IV administration of liquids and drugs.
- Saturday Nov. 19 through Tuesday Nov. 22: IV hydration and meds at the Fred Hutch cancer center outpatient clinic. Bredon starts doing better on Sunday. He poops a bunch! Yay for pooping! But he is feeling worse again by Tuesday.
- Wednesday Nov. 23: A round of FOLFIRI chemo is started, to see if the chemo may knock back some tumor and relieve blockages. He heads home with his chemo pump.
- Thursday Nov. 24, evening: Bredon is feeling rough and very fatigued. He starts vomiting overnight.
- Friday Nov. 25 daytime: symptoms continue with more gusto. After speaking with the clinic, we decide to head to the ER. Katie & Zach packed me a bunch of snacks, which was awesome. Bredon is discharged after several hours, since it appears he is able to keep water down and his bloodwork is OK. Chemo pumping concludes.
- Friday Nov. 25, evening: Back to square one. Bredon starts vomiting as soon as we get back home.
- Saturday Nov. 25: We go to the urgent care clinic at Fred Hutch. It’s nice to be among the familiar team of doctors, PAs, and nurses.
Bredon doesn’t seem to be improving so they decide the next step is to admit him to the main hospital.
We arrive to the hospital around 5pm. I cart Bredon around the hospital in a wheelchair and learn that they have a limited turning radius.
- Sunday Nov. 26 AKA Today: Linda and I are here soaking up the sun in the hospital room. Yes, Seattle does get sunshine sometimes!! Bredon is trying his best to rest.
A nutritionist visited and agreed it is time to begin Total Parenteral Nutrition (TPN) - a method of feeding that bypasses the gastrointestinal tract. Bredon is malnourished and very underweight so hopefully this will help him to get some strength back.
The docs just came by and are tweaking hydration and meds. They will be communicating with the GI surgical team, who we will hopefully see tomorrow.
Next steps:
- Discuss possibility of a endoscopic procedure that was described to us recently. (More info in Bredon’s previous “Chemo Day” update.) The procedure involves using a stent to bypass a particularly troublesome area near the end of the small intestine, thus alleviating one main blockage sites. It is not a surgery that is scheduled in advance but rather something that is attempted in dire situations. This situation seems to qualify as dire, in our opinion at least.
- Slowly ramp up TPN. Refeeding Syndrome is a dangerous electrolyte imbalance that can occur when nutrition is resumed too rapidly after a period of malnourishment. The way to avoid Refeeding Syndrome is to introduce nutrients in a measured way over the course of a few days. TPN will begin overnight tonight.
A lot of folks have been asking about visiting. We welcome visitors, and have a calendar on the website detailing our schedule: https://bredoninspace.com/calendar
Most likely, it’s totally fine if you overlap with other visitors. It’s also okay to be here during a chemo week. Just double check the dates with me before you book! You can email me at juliacmark@gmail.com. We advise that you buy refundable tickets. Also, I am happy to help guide you through housing options.
Most likely, it’s totally fine if you overlap with other visitors. It’s also okay to be here during a chemo week. Just double check the dates with me before you book! You can email me at juliacmark@gmail.com. We advise that you buy refundable tickets. Also, I am happy to help guide you through housing options.
We also welcome FaceTime/Zoom calls, phone calls, texts, letters, etc.!
As of press time, Bredon is currently not feeling up for chatting, as talking aggravates hiccups and nausea. We also would welcome a few billion dollars to fund research on Appendix Cancer, Pseudomyxoma Peritonei (PMP), and related Peritoneal Surface Malignancies (PSM). Anyone have Elon Musk’s cell number??
As of press time, Bredon is currently not feeling up for chatting, as talking aggravates hiccups and nausea. We also would welcome a few billion dollars to fund research on Appendix Cancer, Pseudomyxoma Peritonei (PMP), and related Peritoneal Surface Malignancies (PSM). Anyone have Elon Musk’s cell number??
Concluding thoughts:
It is a blessing to have Linda & Gil renting on Vashon, helping out in tangible and intangible ways. Their logistical support was strongly felt, with all the travel to and from clinics this past week. Also, last night after I left the hospital I stayed over at Mikey & Holly’s place. It was really comforting to be around Mikey, Holly, Ruby, and Wilma the cat. There are countless other friends and family members who have been supporting us from near and far - too many to include in this already lengthy update.
Overall, we eel incredibly grateful for our wide network of amazing friends and family both on- and off-island. Bredon and I are sending lots of love your way.
Overall, we eel incredibly grateful for our wide network of amazing friends and family both on- and off-island. Bredon and I are sending lots of love your way.
etphoneh0me
over 1 year ago
Sending so much love to all three of you! ✨
Healing_thoughts
over 1 year ago
Thanks so much, Julia for the updates 🙏🏻
Strong Baby - sending you lots of love, comfort and prayers ❤️❤️❤️
Strong Baby - sending you lots of love, comfort and prayers ❤️❤️❤️
julia
over 1 year ago
Correction on the last line: We *FEEL* incredibly grateful. No eels were harmed in the making of this update.
Also, most of you know this but for clarification, Linda & Gil are Bredon's mom and dad! (Yes, Bredon and I both have mothers named Linda who were born in Oak Park, IL. Whadda world.)
Thanks for all your caring messages and good vibes.
Also, most of you know this but for clarification, Linda & Gil are Bredon's mom and dad! (Yes, Bredon and I both have mothers named Linda who were born in Oak Park, IL. Whadda world.)
Thanks for all your caring messages and good vibes.
3bix
over 1 year ago
❤️
wyeth
over 1 year ago
Brother we are all with you here in space. Glad to see the sunshine. 🥰🥰🥰 Be sure to go slow with the Turkey Parenteral Nutrition
nodnagrom
over 1 year ago
Hey Bredon and Julia - Sending love your ways... May some soothing of all this pain come your way now. We've been following your Space trip and also talking to people. We'll be there to see you after Christmas if you'd like that? ❤️
andy_p
over 1 year ago
Hang in there, Bredon and Julia! I’ll be working on some of Bredon’s song fragments so hopefully he’ll have something new to listen to soon.
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Treatment Update
3
Chemo Day!
Hey y’all,
We wanted to share a little video account of a chemo day. So we put together a minute long recap for you. We’re going to be putting more videos like this up on YouTube and Instagram and TikTok so please follow, like, and subscribe (and whatever you do on TikTok). Updates will still be posted here so don’t worry if you’re not in those other apps.
The truth is that chemo sucks, yet this video is pretty light. I think everyone knows that chemo isn’t great. We want to keep things positive and remember that there are small little pleasures in even the most arduous tasks.
A couple other updates:
I’ve been dealing with another obstruction this last week. I had an amazing couple of weeks of obstruction-free, easy-eating life where I started gaining back some strength and some weight. But unfortunately I’m kind of back to square one on that after losing all my recent gains.
We think going back to the FOLFIRI treatment actually is part of the reason why I had such a good couple of weeks before backsliding. So we bumped up my next treatment to today (11/23). Kind of a bummer for the holiday weekend, but I think it’s the best for my health.
We also had a consultation with the interventional GI surgeons, and we learned some interesting things. I am not a good candidate for the G tube placement because I have fluid and a tumor around my stomach. They can’t place the tube there because it will get infected and have other issues. However, they have a palliative, potentially life-extending surgical option for me. (They say it’s not a “surgery” but a “procedure”... 🤖 🤷♂️.) They will go through my esophagus into my colon and install a stent that will connect my lower right colon to a point in my small intestine just before the lower obstructed area. They won’t resect any small intestine or anything like that, but in theory it will mitigate the obstructions, at least for a while.
To be clear, there are a lot of problem areas in my gut and this is just the worst one. Others may rear their ugly heads later on. Also, they won’t just schedule the surgery and do it whenever is convenient. They need me to have my “final” obstruction. They will consider an obstruction “final” if I’m hospitalized for it and it does not resolve in three to five days. Technically, this week’s obstruction hits the three to five day mark, but I haven’t been hospitalized and I’ve had some breaks in the intensity of it throughout.
To be clear, there are a lot of problem areas in my gut and this is just the worst one. Others may rear their ugly heads later on. Also, they won’t just schedule the surgery and do it whenever is convenient. They need me to have my “final” obstruction. They will consider an obstruction “final” if I’m hospitalized for it and it does not resolve in three to five days. Technically, this week’s obstruction hits the three to five day mark, but I haven’t been hospitalized and I’ve had some breaks in the intensity of it throughout.
On a final positive note, my parents have arrived and are setting up shop here on the island for the foreseeable future. I can’t express in words how important this is for me. And just before they arrived, I had a couple wonderful visits first from my brother and then my sister.
While my sister was here, she and Julia spent most of the week fixing up our apartment and making it so much more comfortable and functional than it has been since we arrived. Every day Jenny was full of ideas and little tweaks and ways of doing things we hadn't thought of - so we started calling her The Solution™. At the same time, we were talking a lot about how I need to treat myself physically as if I were a baby again: lots of naps and feedings. So without further ado, I present to you our new sister-brother duo name: Strong Baby and The Solution™.
I should also mention that my brother was no slouch and did all kinds of fixer-upper work as well as big brothering me just the right amount. Unfortunately, we haven't come up with a brother-brother duo name. Your submissions are welcome in the comments.
While my sister was here, she and Julia spent most of the week fixing up our apartment and making it so much more comfortable and functional than it has been since we arrived. Every day Jenny was full of ideas and little tweaks and ways of doing things we hadn't thought of - so we started calling her The Solution™. At the same time, we were talking a lot about how I need to treat myself physically as if I were a baby again: lots of naps and feedings. So without further ado, I present to you our new sister-brother duo name: Strong Baby and The Solution™.
I should also mention that my brother was no slouch and did all kinds of fixer-upper work as well as big brothering me just the right amount. Unfortunately, we haven't come up with a brother-brother duo name. Your submissions are welcome in the comments.
Ok I think that’s it for now. Be well!
global_explosion
over 1 year ago
Strong Baby! Top notch moniker.
Healing_thoughts
over 1 year ago
Wyeth = The FixerUpper ®️, Strong Baby, The Solution ™️ and The FixerUpper - the Jones Trio ❤️❤️❤️!!!
Go Strong Baby 💪🏻! Maximum efficiency and minimal discomfort for this round a chemo🙏🏻!!!
Wish you all a beautiful and blessed Thanksgiving 🍁😘!!!
Go Strong Baby 💪🏻! Maximum efficiency and minimal discomfort for this round a chemo🙏🏻!!!
Wish you all a beautiful and blessed Thanksgiving 🍁😘!!!
bredon
over 1 year ago
I love that,
Healing_thoughts
! The Fixer Upper
Healing_thoughts
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
more_sunbeam
over 1 year ago
Love you
Health Update
13
Back in the Saddle Again
I'm here again in the hospital for a small bowel obstruction. Bummer. Thankfully, it is not as bad as the last one that sent me to the hospital for a week.
The obstruction started on Friday morning. I thought I had a handle on it by the evening, and I even slept for a few hours later that night (which is a small miracle under any circumstances these days.) But by 4 or 5 in the morning the blockage was in full swing again.
Julia had the forethought to schedule some hydration at the clinic on Saturday in case I did not recover on my own. So we ventured out into the world seeking hydration and intravenous drugs! While we were at the clinic things were not going well for me and we decided to admit me to the hospital again. It's really hard to make that decision. Even when you are feeling really terrible, it's hard to accept the help and the loss of control over your day-to-day activities. But, the longer I’ve been playing the cancer treatment game, the better I’m getting at going with the flow.
The staff at the clinic and the hospital have been amazing. And they have not bothered to try to make me do an “NG tube” (nasogastric tube) like they did last time. I'm going to deep dive on the NG tube now. If you aren't interested in the dirty details, skip forward a paragraph…
Deep dive: I had an NG tube when I was hospitalized for ileus after my first surgery back in 2020. Ileus is a condition where your gut basically shuts down and it is very common after major abdominal surgeries. The tube, or “Hell in Your Face” as I like to call it now, is very uncomfortable. It is a psychological challenge more than it is physical. They insert it through your nose and down your esophagus while you are awake and probably feeling the worst you have in your life. Then time slows way down as you realize your error. You begin swallowing constantly and painfully as your body tries to reject the tube. They tape it to your nose which doesn't bother at first, but after 24 hours or so the tape and the constant rubbing on the inside of your nose begin to take their toll. You are connected to what is essentially a wall-mounted, biological shop vac and you have to drag the tube with you into the bathroom. It slowly sucks bile out of your gut and deposits it into the shop vac jar for your viewing pleasure. Every doctor and nurse that comes through will comment on the progression from green (bad) to brown (good). If you want to go for a walk you have to be disconnected from the wall. Ok I've probably given this too much time already. Let's just say it is not pleasant. When I was in the hospital in September they had probably ten different doctors and nurses try to convince me to do the tube. I refused them all. This time around there was only one conversation with the very first doctor and she had read the notes on my last hospitalization. Not only did she avoid trying to convince me, but she said that no one else would. And no one else has. It’s little victories like this that keep me going.
Back to non-NG tube content…
I’m writing this on Sunday and I’m still in the hospital. But I’ve talked to the doctors and I’ll be discharged tomorrow provided I don’t have any more major complications. I have an appointment with a surgeon on Tuesday and there is some weird rule that I can’t be in the hospital the same day. So the team here really wants me to be able to talk to the surgeon about potential palliative or life-extending surgical options related to my obstructions.
I’ll post a comment here updating when I’ve actually been discharged.
Photo credits:
Panel 1: Stylized emesis bag, "The Barf Bag", by Julia Mark
Panel 2: Julia. 1:05am at the ER during my September hospital visit
Panel 3: Use your imagination
Panel 4: A GI doc’s artistic attempt at showing us where they think the blockages are
Panels 5-6: I slowly recover and become a digital cowboy. Yeehaw.
bredon
over 1 year ago
Alright. They sprung me loose today. BUT we decided to do chemo tomorrow. So more hospital time. It was a complicated decision to do the chemo this week after everything that's been going on. We're stopping the FOLFOX treatment because it doesn't seem to be effective anymore. We're switching back to second line treatment of FOLFIRI. My weight is down below 150lbs the first time since I was in middle school (as an adult I've weighed between 175 and 205 for most of my life), so the next few weeks are going to be chemo and working to build back up my weight. The nutritionist visited me and we have new tools to help me get things back on track. I wasn't expecting to be back in chemo until November 14th, so you may get a bonus update tomorrow.
julia
over 1 year ago
♡ Chemotherapy. Calories. Calisthenics. Cuddles. That's what's on deck for this week!!
arlie@0.9.9-b>>
ts: 1666678578
bredon
<< comment
wyeth
over 1 year ago
Looks like hospital moon got some new art after your visit. Thanks Pilot Julia for flying my brother there🙏
nowhere
over 1 year ago
We are planning a fully liquid thanksgiving. I'm getting a "Bass-o-matic 76" to blend up the salmon!
https://www.youtube.com/watch?v=2HKTx5WFcs0
https://www.youtube.com/watch?v=2HKTx5WFcs0
julia
over 1 year ago
nowhere
wyeth
nowhere
over 1 year ago
I guess "gathered_dust" is kinda funny...it's just what the autogenerator gave me....I changed it...and my photo/avatar thingy.
reeeeeeeidy
over 1 year ago
bredon
collapsing_cosmic
over 1 year ago
That is a great doc and hospital staff, not to force the hell in your face. Sounds like way more than just a little victory; its the whole thing. You and your team working together to address the physical and pyschological. The pics are great too, thanks for sharing.
Hoping to update a photo for my avatar when I'm off the work computer later today...
bredon
Hoping to update a photo for my avatar when I'm off the work computer later today...
bredon
ry.an_alpha
over 1 year ago
Glad to have finally landed on Hospital Moon.
bredon
and
julia
, hugs and love for sharing these times with all of us in such a cosmically-adventurous way. We're all made of stars, after all.
bredon
julia
corally
over 1 year ago
Happy to see your smiling faces and to be here in space with all your loved ones! Maybe it should be called "ALL WHO LOVE BREDON, IN SPACE" :) love you both!
saturn_dog
over 1 year ago
Very glad that collages still exist in space!! I like Carly's idea of "All who love Bredon, in space"
:)
:)
saturn_dog
over 1 year ago
Very glad that collages still exist in space!! I like Carly's idea of "All who love Bredon, in space"
:)
:)
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325
Treatment
0
10/10/2022 - Magic Number 37
A quick update here on this week's chemo treatment. This is my 37th treatment overall and the 8th with the new clinic in Seattle.
It's been a blessing to have Julia able to join me at the clinic, which we were never able to do during the earlier phases of the pandemic in St. Louis. She helps me keep track of all the things to talk about with the doctor and what was said. And I can't believe I used to drive myself back and forth from the hospital alone. Different times.
Unfortunately, my cancer markers continue to creep up. They sometimes go down a little, but when they come up it is usually pretty obvious. We are currently questioning whether the current FOLFOX treatment is doing anything at all anymore, or if we need to change it up. As of right now, the plan is to do a handful more treatments and then evaluate. We may go back to second line treatment again and see if we can get anything out of it.
I want to get in the habit of quicker updates like this one. I've been bad about keeping everyone updated but that's going to change here soon.
Love,
Bredon
It's been a blessing to have Julia able to join me at the clinic, which we were never able to do during the earlier phases of the pandemic in St. Louis. She helps me keep track of all the things to talk about with the doctor and what was said. And I can't believe I used to drive myself back and forth from the hospital alone. Different times.
Unfortunately, my cancer markers continue to creep up. They sometimes go down a little, but when they come up it is usually pretty obvious. We are currently questioning whether the current FOLFOX treatment is doing anything at all anymore, or if we need to change it up. As of right now, the plan is to do a handful more treatments and then evaluate. We may go back to second line treatment again and see if we can get anything out of it.
I want to get in the habit of quicker updates like this one. I've been bad about keeping everyone updated but that's going to change here soon.
Love,
Bredon
arlie@0.9.9-b >>Humans are no longer permitted to reply to this Node Log.<< notice T1713537325