Total surprise while leaving our house on Sunday morning to get to UC Davis for the next steps in treatment.
#concernhelpscancerpatients
#community
#tahoecommunity
#lovethisplace
Tahoe delivered its own version of a send-off on Saturday night with an incredible sunset followed by nighttime thunderstorms best enjoyed with the lights turned off. It almost seemed like it knew I'd be inside the hospital for the next 6-8 weeks.
The next morning, Andrea, Noah, and Kate dropped me off at UC Davis so docs could start a type of chemo that we hope will knock back the tumors that have spread throughout the body (spine and other bones, lungs, and soft tissues). The goal? - To get out far enough on the timeline to get on a CAR-T cell trial - I lost my spot last month, but hopefully, I can secure the next one. In that trial, they would take my 2nd donor's lymphocytes, genetically modify them to go after the cancer, and inject them into me after a few weeks of growing them in the lab.
I have to be honest; the last several months have been so challenging, especially with the pain, that I wasn't sure I had enough reserve left in the tank to take on this next step. But my oncologist reassured me and said, "I think you do." The other option is end-of-life care, so here we are - we're going for an attempt to hold onto life, instead.
I appreciate all the support - it has meant the world to me. I know many of you have left supportive comment after supportive comment. Please do not feel obligated to keep tuning in and posting. But I'll keep sharing as long as possible because I've committed to approaching this process with as much transparency as possible. I hope the openness benefits people as it has benefitted me.
The next post will be a video of a surprise community send off. #tears
#fightingforitnow
#adjustingmindsetforthisnextstep
#endurance
In the name of continuing to bring cancer patient experiences to awareness, I’ll keep posting what I can. Countless people out there deal with similar situations, but most do not talk about it. Pain draws us inward and can close us off.
The past six weeks has been the most challenging period we’ve faced since I was diagnosed with AML. After two bone marrow transplants and a relatively symptomless year that provided a much needed reprieve, the cancer morphed into a new kind that creates painful tumors throughout the body.
Since July 2019, I grew to understand suffering. But this new chapter has brought levels I hadn’t touched before. Andrea has shown strength I didn’t even know existed. This strength exists in most of us and it takes the right circumstances to bring it to the forefront.
This photo was taken an hour ago on our way into UCSF where I’ll remain until next week. Our goal is to go bone marrow hunting in my lumbar vertebrae to find diseased marrow so I can get on a CAR-T cell trial from which I’ve been disqualified several times. These lumbar vertebrae remain untouched from radiation over the past month. Please keep all of your fingers crossed that we see cancer raging in them so I can get on the trial. It’s a strange hope - I know.
Andrea, Noah, and Kate are dealing with this situation incredibly well. Strength comes in emotional expression and we cry together daily.
I love you all and please know the outpouring of support has been incredible for us.
#aml
@bethematch
#community
#thankyou
It took me a bit to finally gain the energy put this out there. When I say Keep Tahoe True, I’m referring to Tahoe Truckee True. Trust in communities is everything, and to ensure good quality of life for everyone who lives in and visits North Tahoe, the only way forward is to insist upon the truth.
@tahoetruckeetrue@sierrawatch
#truth
#standupfortruth
#tahoestrong
#worktogether
Hang in there - the process is long and difficult but worth it.
Palisades Tahoe…
We often avoid talking about suffering. I’ve been in an intense phase of suffering for weeks and months. Got to the water this morn, which was a big outing.
To open the conversation, I want to answer the first three questions you generate in the comments. Ask anything you are curious about related to what it is like to approach death - any topic, no matter how personal, is on the table. Dig deep and go for it. (I can provide brief replies, so don’t expect any novels in return. Although if I had the time and energy, I’d love to write for hours about it. But I’ll reserve that energy for a book I’m writing.)
#cancer
#suffering
#death
Family is everything….neurosurgeon just removed a large metastatic tumor from the spinal canal that was pushing the spinal cord to the left half. Nice to wake up to these beautiful faces! #tahoetruckeetrue
#truthhealscommunities
#cancerjourney
GNARNIA
I happened to catch these guys from across the valley. The international space station flew directly over their heads and then over me right before they dropped in. A quick search on Spot The Station confirmed it.
Zoom in and you can spot the snowboarder exiting the line.
2017
First and the last time anyone descended it. For good reason!
#squallywood
#exposed
#quadrupleblackdiamond
Alterra made the claim. That’s right! Not enough to do in Tahoe in the summer. Do you agree? I sure don’t. Show Instagram what you love to do in a Tahoe summer. Tag @sierrawatch and use #tahoetruckeetrue
Let’s Go!
The stars aligned and delivered a beautiful blue and windless day on an iconic summit without anyone else around. The day before, I had received not-so-great news from a lymph node biopsy a few days earlier. Unfortunately, a third cancer evolved from the earlier forms and has taken up shop in various spots in my body. This thing is relentless. But at least after radiation last month, the tumors in the left pelvis that caused debilitating pain and laid me up this winter are gone. Other areas have begun to light up now, but they are not as bad yet.
A weather/pain/college window opened the day after Kate finished her last sophomore year final. So, we beelined it straight to Yosemite.
I wasn’t sure I’d make it - I was limping along the first couple of miles. But with some pain management and help from the beauty of this incredible place enhanced by the snowpack of a historic winter, it felt like the cancer wasn’t even on the radar.
At the top, I had to send a photo to my outstanding oncologists, Dr. Ahrin Koppel at Tahoe Forest and Dr. Rasmus Hoeg at UC Davis, to thank them.
@bethematch@americancancersociety
#yosemite
#halfdome
#2023
#daddydaughter
#daddydaughtertime
These moments were made possible by oxycodone. I know. I know. It's in a class of drugs we all fear, justifiably. Opioids have wreaked havoc on millions of lives and killed nearly a million people since 1999. Court systems should put away (for good) members of the Sackler family and anyone else who has earned money while knowingly taking people's lives and destroying families. The opioid epidemic fallout has rippled through the medical system. Understandably, doctors fear prescribing these meds because of potential repercussions from oversight policies meant to reign in a devastating trend in opioid addiction. The regulation is necessary. But as a society, let's not forget the patients who need these medications to improve their quality of life in their remaining days, weeks, months, and years.
Significant pain is not foreign to me. Among other injuries, I suffered a full-knee dislocation in 2016 on a mountainside in Alaska, tearing everything and leaving a strand of the LCL hanging on while the force of the fall ejected the inner parts of the knee out of the joint. But the injury and the recovery caused time-limited pain. And nothing has compared to the relentless pain caused by cancer invading the bones.
Without pain control over the past three months, I wouldn't have been able to last 24 hours. But thanks to a combination of ibuprofen and oxycodone, I am not stuck inside writhing on the couch. I can get outside and experience life. And I put this post out there so that other cancer patients don't get caught in the fear trap like I was. I avoided opioids at all costs for a while, I suffered, and my life was limited to shuffling around the living room. But now I better understand the purpose of these meds in palliative care and the potentially devastating impacts on patients who avoid appropriate treatment and experience untreated pain. For other patients in chronic pain due to cancer, my advice is treat it and open your life back up.
#cancer
#palliativecare
#feelinggood
