12/03/2022
My Cancer Update - It's Now GoFundMe Time.
The cancer that started in my eye, has now spread to my liver. And it's incurable.
So yes, I have eye cancer in my liver ;)
RECAP: On January 5th, I was diagnosed with ocular melanoma, a very rare eye cancer that affects only 5 out of 1 million people a year in the United States.
My left eye was not worth saving due to the size and position of the tumor, so I opted to have it removed (enucleated) on February 22nd.
But removing my eye was the easy part. I recovered quickly and was back to night surfing in 6 weeks.
Ocular melanoma is an insidious disease, and comes with a lifelong risk of metastasis in the liver or lungs. Due to the genetics of my tumor I had a 72% chance of metastasis in the first 5 years. So I was always waiting for the next shoe to drop. But that drop came way too soon, and lesions were discovered in my liver on September 27th. Ouch!
A core liver biopsy on October 27th confirmed metastatic uveal melanoma. And a follow up scan on November 7th showed the tumors had grown and new ones were forming.
And once it spreads to the liver, it's incurable. Incurable, but treatable. Think of it as a terminal illness with an ambiguous end date. So no doctor has declared I have 6 months to live, or I have a year to live. I have a "you're definitely going to die much sooner than you thought" situation.
But even with treatments, the average lifespan is only 2 years with this disease (metastatic uveal melanoma). However, treatments keep improving, and some are making it 3 to 5 years, and occasionally longer. I hope to be one of those.
Since there is no cure, many of us start with an experimental drug trial. Anything that seems to have evidence of working better than the typical options, which include chemo embolization, immunoembolization, radiation, and tumor resection, seems like a reasonable choice.
The goal is to stop the spread or growth of the tumor. That in itself is considered a pretty big win. And if you actually shrink the tumors or even kill them, it's definitely time to celebrate.
But the tumors always come back, and have a bad habit of spreading to other parts of the body. So it's like a game of whack-a-mole.
If a treatment is working you stick with it until it doesn't. Then you try something else. You keep moving through various treatments until nothing works anymore, the tumors overcome your liver, and then you die.
My first treatment option, which I'll start late this month, Is the IDEAYA trial in UCLA. Phase 1 of the trial has shown positive results for a large number of the participants. Unfortunately the side effects of the two drugs, IDE196 (a PKC Inhibitor) and Crizotinib (tyrosine kinase inhibitor) can be very harsh. Some people have the doses reduced to survive the trial, and some have to drop out entirely. But some get by with just daily nausea and diarrhea. Which I would consider a fair trade-off if that means I can stay alive a little longer.
That's how low the bar is set;
So what have I been up to?
I'm still night surfing everyday and getting out to shoot the sunset and the sunrise as much as possible. I'm in no pain and I feel healthy. That's what's so scary about cancer. You usually don't feel anything until it's too late. So I'm walking around with four sizable lesions in my liver, with a bunch of baby ones (peppering) waiting in the wings, but would never know if it wasn't for all of the scans and ultrasounds.
However, managing my cancer has turned into a nearly full-time job. Since the tumors were first discovered on September 27th it's just been a whirlwind of scans, appointments, researching treatment options, and consulting with the top uveal melanoma specialists in the country. That's not even getting into the near daily frustrations with making sure all of this is coordinated with insurance.
And then there's just the weight of dealing with your mortality. I "meditate" on my death daily. Some days more than others. It's not as gruesome as it sounds. But it does take deliberate effort. Because if you don't deal with your own mortality and the reality of this situation, it will consume you. So I have to make peace with the inevitable, so I can release myself to live in the moment. And I find myself doing it everyday. There's no way to escape it, and every time I look in the mirror, and see my left eye missing, it's a stark reminder of my situation.
Some days can be pretty rough, and I feel emotionally drained, which in turn makes you physically tired and unmotivated. Those are the days where you can't even remember if you accomplished anything. The day can feel fuzzy and ill defined.
And then some days are quite easy and I can be focused and productive.
That's one of the frustrations with incurable cancer. You know your lifespan is limited but you also need to be a strong advocate for yourself in the medical system or you'll just get left behind. So just when you really need to be at your most focused and energized, you often find yourself fuzzy-headed, distracted and physically tired.
But I generally wake up very happy, and most of the day my energy and mood is good. At least good enough. Because you have to adjust to the new normal. I'm never going to wake up in the same state of mind as I did before my diagnosis. Those days are gone forever. I will never have the luxury of intellectually understanding that I will die someday, yet able to wake up every day and behave as if I'm immortal.
It's a wonderful trick our brain plays on us. Did you wake up today, and come to terms that you too will someday die, and then live the rest of your day being informed by that reality? Probably not. You probably just woke up and lived your day as if you will live forever. It's a beautiful feeling, I really miss that.
So my highs are not as high, except when I'm surfing or shooting, and my lows are not as low. Because if you're not in that flow state, where there is no past or future and you're only living 100% in the moment, the reality of your situation will creep in. And that kind of shaves the excitement of going to concerts or comedy or any other event that used to be so pure and emotionally unencumbered.
However I don't get as frustrated either. The minute I find myself getting upset over something stupid, I just asked myself "What the hell am I doing here?" This is a total waste of time. Why would I want to invest any energy in this?
I've also been very active in the Facebook ocular melanoma community, and creating YouTube videos to educate people about this disease, coping with cancer and living with one eye. Stanford's social media sites have highlighted my activism and educational outreach, and fellow ocular melanoma patients reach out to me privately, seeking clarity and guidance and a safe place to unload their worst fears.
So this brings me to my GoFundMe campaign. I've been self-employed since 1996. I've always been the main or sole income earner in our family. I've been hustling for decades, lining up clients and knocking out design and branding projects, but my productivity has taken a nosedive. And once I start flying back and forth to UCLA for my treatments, and dealing with the side effects, it'll probably get even worse.
So my family is slowly going broke. I've had two long term clients gently "fire" me recently, and I don't blame them. They needed to find somebody else because I just can't handle their demands right now.
If you can contribute, that's fantastic. Any amount is appreciated. If you can't contribute, but you would like to help, just sharing the GoFundMe campaign is incredibly helpful.
Thanks!
Clay's Cancer Has Now Spread to His Liver, and It's Incurable It's … David Butler needs your support for Losing His Eye To Cancer Was The Easy Part
