GONE
GRAHAM & SAM AND CANCER
Most Recent Updates are at the Top
This is where we will be posting updates about Graham's cancer and how we are navigating this period of our lives.
Sarah, Sam's sister, will be posting these updates as we are able to generate them. Our intention is to provide our friends, families, and community with factual information and options for support
If you are able to provide financial support, see the "Support" link below. You can also Venmo Sam directly (@goneresidency).
We are so grateful for each and every one of you. Thank you for your love and support.
DECEMBER 27, 2022
Well, I (Sam) really hoped never to have to write these words. Graham died on the morning of December 21st, last Wednesday. We were able to stay at home, in our own bed, for the entirety of hospice care, which was very much what Graham wanted.
I intend to write more, but I hate cliches, and death seems rife with them, so I will wait until I can clarify my thoughts.
As for me, I am still busy reeling, my sister and her partner Austin are still here until the 28th. They’ll head back to North Carolina because they must, but they’d stay if they could.
We all were exposed to COVID, because the universe is a place full of cruel jokes. We feel fine, but our social calendars have had to be emptied. Five days and five negative tests later and we hope that means we managed not to catch it.
This community, whether you were aware of it or not, was essential to Graham and to Sam before Graham was diagnosed with cancer, during treatment, and at the very end.
You’ve shown up for us in so many ways. I (Sarah) know you will keep showing up for my sister. It has been so beautiful to watch your love and care surround her. I’m grateful for each of you. We’re grateful for all of you.
DECEMBER 13, 2022
Graham started hospice today, at home, surrounded by family and loved ones. The hospice nurse, Marie, was impressed by how much support Graham (and Sam) have here. She feels like he is well cared for and she really demonstrated that hospice can provide what will be helpful, focused on what Graham and Sam want and need.
We made this shift for a few reasons. We really didn’t observe any positive effects of the latest chemo drug. Instead, in the week since I (Sarah) have been here, Graham has been moving around less, being lucid and present for less time each day, and sleeping more every day. The home health program was marginally helpful, but really wasn’t able to meet us where we are, meet Graham where he is. They wanted to know if he wanted to be able to, for example, do laundry. He (it seems) would rather focus on being comfortable and present for as much time as possible.
Hospice, even on this first day, is focused on Graham and wants to ensure open communication with Sam, myself, and Christina, Graham’s mom, so that we can all work together to support Graham and support each other.
Although we haven’t talked to Dr. Gupta about a more precise prognosis, we each feel in our hearts that our time with Graham and Graham’s time with all of us is coming to a close. Marie agrees, it is likely now a matter of weeks, not months, until Graham dies.
Sam, Graham, and I had a fabulous conversation about death over dinner on Friday. Graham noted with humor and humility that he is going to die, perhaps not more certainly than either Sam or I, but sooner (probably) than the two of us. He has never been someone to shy away from death, it is the only thing that we will all experience. Although he’s asleep now, I think he’d agree that it’s pretty cool that he gets to experience it surrounded by love, even if it’s sooner than any of us hoped.
So, we don’t know when Graham will die, just like we don’t know when any of us will die. But we are hopeful that, with hospice, we can make whatever time Graham has with us as comfortable and as good as it can be. Currently he is sleeping with a cat on his lap and his mom is sitting with him. I’d say that’s pretty good.
DECEMBER 5, 2022
We could no longer support a site that was so disingenuous and misleading, so we’ve moved everything here.
To start from the beginning, start towards the bottom.
NOVEMBER 28, 2022
We’ve been working on and trying to write a proper update for over a month now, and have barely gotten any drafts or notes done, let alone our usual considered, cohesive finished statements. Each time we begin, everything has been changing on us, and we haven’t been able to keep up.
So, the short and bitter update first, with details to follow:
After Graham’s second round of chemo landed him in the ICU for a week with fluid around his heart and blood clots in his heart and lungs, we got the last news we wanted to hear.
Graham’s cancer is now considered terminal. “Incurable,” said our oncologist. He (Dr. Gupta) estimates that Graham has less than six months to live.
We are reeling, still in shock, devastated. And we are committed to making the best of whatever time that we have together, and with our people, as much as we can.
The “How We Got Here” follows, with the most recent events at the top.
We wish we had more to share, we wish we knew more - we want to ask that you please forgive us both for the times we don’t answer your phone calls, call or text back, or make time to see you. We want to. We just can’t right now. It’s both physically and mentally more than Graham’s body can take, and Sam is and needs to be completely focused on him and his needs.
I know it’s been hard to understand our somewhat sudden retreat. We really tried to tough it out and do it all through the last round of chemo, and to keep just how dark and hard everything was out of view, because that’s just been our nature, the way we do things. This time we can’t afford to do that. Every drop of our energy is needed right now to get us through this.
Thank you all so much for your love, your support, and your contributions, we are overcome with gratitude, and it means so much to know we have you in our corner.
NOVEMBER 22, 2022
The news we did receive was the news we hoped never to hear. We knew the possibility, probability, but hoped for a different result.
Graham’s cancer is no longer curable, likely no longer treatable. The doctors are stopping chemotherapy, and, at least for now, stopping radiation treatments. Still lacking full information, they guess that Graham has less than six months before his cancer takes his life.
Graham was discharged home on Friday, November 18. We spent the weekend processing this news, as much as it is possible to process.
On Monday, November 21, we had an appointment at the cancer center with Dr. Gupta, where tests confirmed that the cancer is indeed in his heart muscle, as well as attacking other muscles. There’s significant risk of his pericardium filling with fluid again, and the procedure to drain it is still extremely dangerous, as well as being extremely taxing on his overtaxed body. For this and many other reasons, there will be no more chemotherapy or immunotherapy. There is a breast cancer drug that has shown minimal promise in slowing/stopping progression of gastroesophageal cancers that we are going to try. We are also being referred for home health care, as Graham’s range of motion has been limited somewhat, and his energy and strength reduced greatly, but more so because things could take a dramatic turn for the worse at any moment.
NOVEMBER 18, 2022
We are doing our best, and we are taking each day, each new piece of information, as they come. We are again in a state of uncertainty, waiting for doctors and tests, but we want to share with you what we know as we know it to be.
During the last week of chemotherapy and radiation (11/07-11/11), Graham had a consistently high heart rate (~130bpm) and low blood pressure. Our doctors assumed this was a reaction to the chemotherapy as well as dehydration. He received hydration treatments twice last week. Over the weekend, though, his heart rate climbed, and he was having chest pain and shortness of breath. We called the on-call physician at the cancer center, who told us to go to the emergency room.
We arrived around 12:30am Sunday, November 13. First they found a build-up of what would eventually amount to 2 liters of fluid around his heart (in his pericardium). This required emergency cardiac intervention, or to be blunt, a giant needle directed to just the right spot so as to properly drain the fluid but not cause severe complications/death.
Graham was then transferred to the Medical Intensive Care Unit (ICU).
Besides the fluid around his heart, which continued to be drained through a light blue tube about half a centimeter wide coming out of the center of his chest for several days, he also had blood clots in his lungs and his heart (pulmonary embolism, deep vein thrombosis). They are conducting tests to determine if there are cancerous cells in Graham’s heart. He is also now on blood thinners to prevent further clotting.
Doctors also identified small objects on Graham’s heart that resemble the tumors already identified on his head. They are not sure if these are cancer or a reaction to immunotherapy. They put him on steroids in case the bumps are an immunotherapy response because steroids would likely reduce them. However, they are continuing testing and we don’t know yet what, exactly, is wrong.
Since Sunday morning we have been in a state of medical limbo. Waiting for doctors, surgeons, and nurses to conduct tests and provide information. Graham is sleeping most of the time, Sam is at the ICU every day from 6:30am until 9pm, both of us waiting for news.
NOVEMBER 9, 2022
It’s hard to believe it’s been over a month since we last shared an update. There’s a lot to share.
Graham started this round of chemotherapy/immunotherapy on October 19th. They are giving him the same chemotherapy drugs (Taxol, Carboplatin) as the last time, though configured differently, and a relative of the previous immunotherapy (previous: nivolumab, current: pembrolizumab). His hair is already falling out, the nausea has begun, and we’ve been surprised by the severity of the fatigue; Graham has been needing 12-18 hours of sleep a day, and when he is awake, he’s exhausted.
Sam is spending all her time managing Graham’s care, and keeping some joy in our lives.
We finally got in to see pain management, where an MRI more clearly showed the cancer in the bones in Graham’s spine. The fact that it’s there at all is the really bad news; the good news is that it had not yet grown to cause irreversible paralysis from the chest down; the better news is that it has been long enough and the area is in a different enough location from the original tumor that it is safe to do radiation again, which Graham started on Monday (11/7).
What this all means is that they’re throwing everything they can at this, and we are mostly just doing our best to survive it. We have at least one appointment every weekday through just before Christmas.
NOVEMBER 5, 2022
A note from Orval:
Graham is currently undergoing intensive treatment (chemotherapy, immunotherapy, and radiation). Please know that Sam and Graham, and their families, are so very grateful for your support. We will post more when we are able to.
PS a reminder that for anyone who does wish to lend their support financially, GoFundMe, or Venmo, is the place to do it. If you’d like to leave a message, you may do so via email (see post from October 5).
OCTOBER 5, 2022
Update from Sam & Graham:
The news is not good. Our oncologist Dr. Gupta called from his vacation yesterday to tell us that the cancer has returned and metastasized.
All the new lumps on his skin (located all over his body) are cancer. It has spread in at least one area to the bone, which is known clinically as “really bad.”
If left untreated, his condition is now terminal.
Dr. Gupta is suggesting going back on chemotherapy (likely the same kind as before) and immunotherapy as soon as possible. We are waiting on insurance approval, then scheduling should go quickly.
We are pulling out our hair thinking we could have (should have) caught this a month or more ago; if communication from Palliative Care had been more direct and clear; if we had known they suspected cancer pain and not just nerve pain (this was news to us after weeks of them treating for that suspicion and neglecting to mention it); if we had medical training and could more easily have figured out what was going on; if we’d known that they wouldn’t be looking for symptoms of recurrent cancer with any concern at all, and that all concern on that front would need to come from us… If, if, if…
But there is nothing to be done about that now.
Now we have to think about starting another round of chemotherapy, the first of which brought with it the darkest and hardest and most exhausting times we’ve experienced. And there’s no guarantee it will work. We still have much to learn about just how dire the straits we’re in and headed into are. A bright spot is that the first round of chemo was effective, so there is reason to have hope going into it again.
Still, it’s hard right now not be paralyzed by fear. If we are managing to steer clear of paralysis, we can assure you we are living fully inside of this fear.
We are going to need help more than ever now. There are some ways that we already know we need help, and many others that we haven’t thought of.
Donations can be sent via GoFundMe, Venmo, or Zelle (lazysusansb@gmail.com).
Words (messages, notes, questions, suggestions…) can be sent via email to lazysusansb@gmail.com, or to Orval (my stepfather) oosborne1@gmail.com.
SEPTEMBER 28, 2022
Update from Sam & Graham:
We went in for a PET scan on Monday 9/26, and met with our oncologist, Dr. Gupta, on Tuesday 9/27. We were supposed to have a consultation with Dr. Conway (who performed Graham’s esophagectomy) today 9/28 regarding scheduling biopsies, but instead met with his NP Shannon, and then sat in an exam room for 2 hours waiting for Dr. Conway, who got stuck in the OR and never did make it, but whom we’ll see on Friday 9/30 for the procedure, which will be a biopsy of a lump on Graham’s scalp. This is to address the new array of lumps that have recently appeared under Graham’s skin, and that did light up on the PET scan.
A colonoscopy is also on the docket to survey suspicious activity inside Graham's intestines. These seem to be the two new trouble areas identified by the scan. We have yet to receive a diagnosis of recurrence, and could instead be looking at the effects of an outsized immune system response triggered by the immunotherapy Graham received some months ago (along the lines of the explanation given for the last 3 biopsy results. Let's hope that the latter is the finding…).
A note on pain management: we realized last week, when reporting that Graham was coughing up blood to Dr. Meyer’s team at Palliative Care, that there must have been a misunderstanding with them, or at the very least a mis-emphasis. They had been trying out high levels of opiates because they presumably thought they were treating cancer pain, seemingly thinking that Graham had an active cancer that wasn’t being treated curatively (rather than a lack of active cancer (to the best of anyone’s knowledge) being the reason for the lack of current cancer treatment), and therefore that signs of potential new tumor growth and general illness were not causes for alarm and sending us back to Oncology. In short, the Palliative team had unnecessarily given Graham the wonderful gift of an opiate dependency (with all attendant gifts) while ignoring future symptoms as simply end-game results to be managed.
We are now starting to walk the opiates back down, hopefully avoiding too much more unnecessary suffering. But the upside is that while the opiates never did actually help reduce the pain, they have caused a load of unpleasant side effects, so we have hopes that at least he’ll be able to poop regularly again soon.
In better news, after we did make it back to Oncology (thank the gods for the blood?), and our doctor talked to Palliative, we finally got a referral to Pain Management, who we’ll see next week, and got connected with the acupuncturist Ridley-Tree has an arrangement with, though that has yet to be scheduled due to availability stemming from funding cuts.
And a bad Cancer joke for you from Graham:
Q: What do you call a church (chapel?) with lumps that are non-malignant?
A: Cystine
