*PLEASE NOTE: If you want to donate to Graham & Sam, please head to the GoFundMe site (
https://gofund.me/5e3500f2), or see Venmo & Zelle options below. The donation option under Tributes goes directly to CaringBridge, the money does not go to us. Of course there is absolutely no obligation to donate!
And if you'd like to leave a comment or message, please do, just look under "Well Wishes," where you can do so for free.
They won't let us change the title of this section, but please note our disapproval. We wanted (and needed, and Sam insisted on) a way to keep all of you who we call family updated on Graham's health, how we're doing, and what kinds of help we could use, for those who want to help and for whom it does not cost too much. This model wouldn't have been our choice, but we can't think of one that would and would also be practical, so long story short, here we are.
The Abridged History:
In June of 2021, after over a decade having avoided taking a pill or seeing a doctor (he had no health insurance), Graham got really sick, and eventually stopped being able to keep any food or liquid down at all. We went to the ER when we ran out of other options. As it turned out, Graham's preexisting Achalasia (narrowing of the esophagus resulting in difficulty swallowing) had worsened and created a perfect environment for the Squamous Cell Esophageal Cancer that had invited itself in, which by this point was already at Stage IV, and had grown large enough to obstruct what was left of Graham's esophageal “drainage ditch” (pun intended).
What followed were many many days in the Covid-restricted hospital, a drainage tube out his nose, and a feeding tube through his arm in order to keep him alive. He was sent home after a couple of weeks to recuperate enough for life-saving surgery, his liquid food and hydration in a bag to carry around with him in a specially-made backpack.
Then came the ~8-hour esophagectomy that went longer than expected because the cancer was too close to his pericardium, so they had to switch from laparoscopic (care of the giant, vintage Volkswagen-sized robot) to the old-fashioned way, replaced by surgeons’ steady hands and pointy tools.
Then recovery in the hospital, and very quickly into aggressive chemotherapy and radiation for ~6 months, which was a full-time job (or 10) and also miserable, then into immunotherapy. Easily the most challenging months of both our lives.
The first PET scan after chemo/radiation came back clean. We were told we could say Graham was cancer-free. He did 3 months of immunotherapy and then got another PET scan. This one lit up all over. We were scheduled for biopsies and immediately referred to the Duarte, California-based City of Hope for a consult and clinical trials, as a recurrence of this type of cancer so soon and with apparent metastasis implied we were in"Hail Mary" territory, counting down months to live, not years.
Then the biopsies came back; they found sequestered carbon in one lymph node (tattoo ink “walled-off” cellularly due to hyperactive response to immunotherapy was their best guess), but no cancer. The doctor at City of Hope said he'd never seen a pathology report like it, and sent us home.
They continued immunotherapy for another month or two, when Graham started having numbness in his right foot, and nerve pain radiating from his surgery spots. After an MRI showed nothing medically alarming in his brain, they decided to stop immunotherapy.
A third post-treatment PET scan showed similar spots lighting up, with some changes. This time they didn't send us to City of Hope, just for more biopsies, both of which came back “clean” for cancer.
This appointment was also our last appointment with our oncologist, Dr. Penn, who left the Ridley-Tree practice.
We got lost in the shuffle a bit, waiting for biopsies to be scheduled, and waiting to meet our new oncologist, Dr. Gupta. We started working with Dr. Meyers in Palliative Care sometime around this time, as there was no cancer to treat, but plenty of nerve pain, perhaps because chemo and radiation were started so soon after surgery that the nerves were just beginning to grow back.
They had already tried gabapentin (made Graham feel like he was on a bad mushroom trip), and Lyrica (brought with it suicidal ideation and severe depression), the first line treatments for nerve pain, so we were already a little wary of what these central nervous system drugs could do to his brain. But just tramadol wasn't cutting it. Palliative substantially increased his opiates, and added another drug (amitriptyline) that had truly bizarre side effects: Graham became suddenly dyslexic, struggling with spelling basic words, or even finding the right word. He could not read or write, had severe brain fog and confusion. If you know Graham at all, you can imagine how alarming that would be.
Unfortunately, that drug seemed to be Palliative's last idea to help with pain that wasn't opiates, so with Graham consistently between 6 and 11 on the 0-10 pain scale, with most of the time spent between 9 and 11, they just kept upping the opiates (we had made clear that mental clarity was absolutely the #1 priority with no close seconds). We went along because we were desperate and were hoping that if we could get the pain to even a semi-manageable level that then we'd be able to search out other, better answers, but with each dosage increase, it seemed like the pain just rose to meet it.
The mental side effects from the amitriptyline have not fully gone away, Graham is still having a hard time with reading and writing. Pain, drug side effects, strange and uncomfortable new symptoms that could be cancer or could still be his immune system attacking him, and the exhaustion and demoralization inherent in this process are making it more difficult than ever to try to keep some semblance of normalcy (our normal, we know our normal has never been normal, but it's ours and we like it).
Because of this, and because we've come to the realization that walking this path really needs to be a full-time job for both of us for the foreseeable future in order to get the kind of medical care that Graham needs and not run ourselves completely ragged (as is our natural inclination in service of those we love), we have made the hard but necessary decision that Lazy Susan (our beloved art services business) will go on an indefinite hiatus. What this means is that neither of us will be generating income until further notice, one because Graham has not been physically able to work for some time, and two because Sam simply cannot continue to shoulder the load of doing everything for the business as well as for Graham’s increasingly complicated care.
We are working on getting connected with any and all services available to us. Graham is already on Medi-Cal (California’s Medicaid program), so most traditional treatments are completely covered. We will hopefully get set up with IHSS (In-Home Support Services), where the state will pay for some number of hours (depending on need) of in-home care, and Sam can at least get paid minimum wage for that allotment of hours doing what she is already doing.
However, even with our minimal-by-design expenses, we will need more than this. It is really hard for us, and far outside our comfort zone to ask for and accept help, but the time has come. Sam’s wonderful stepdad Orval has so generously volunteered to run this site for us, and he and we will keep it as up-to-date as possible both with ways to help and with health updates as we receive them.
We are setting up a GoFundMe page, and will have a link to it here as soon as we have it up.
If you would like a fee-free way to contribute financially, you can use:
-Venmo: @goneresidency or
https://account.venmo.com/u/goneresidency-Zelle: (805) 252-3184
We are also working on making a list of non-financial ways to help, to be revealed as soon as we can.
Thank you all so much for your love and support, in all its forms, in these solidly crappy times.
So much love & gratitude,
Graham & Sam
Please Note: During this time, there will be periods where we will not be answering our phones or returning calls or texts (or emails), or coming to the door. It does not mean we don’t want to talk to you or see you, it does not mean that we love you any less. Please don’t take offense, and don’t assume it’s cause for alarm, it’s definitely not meant to offend, and when we’re not sharing information, it’s generally because we don’t have more information to share, so assumptions, and alarm without good cause are unhelpful. We will really do our best to keep everyone posted and up to date, hence this format.
