Adventures in Cancerland - the Sequel

As most of you have heard, in April I was diagnosed with choroidal melanoma – eyeball cancer. The diagnosis set off several weeks of travel, treatment, and decisions. And of course, another overwhelming round of generosity and kindness from my friends, family and community. I know many people have questions, so I invite you to peruse the FAQ below.

1.       Eyeball cancer? Seriously?

Yeah, who even knew? Ocular melanoma is a rare form of skin cancer diagnosed in approximately 6 in 1 million Americans annually. Risk factors include having fair skin and light eyes, and a history of welding or sun/snow burn. Almost 20 years ago an optometrist found a nevus – basically a freckle – in my right eye. Apparently an estimated 1 in 500 such freckles become cancerous over ten years.[1]

2.       Is it related to your breast cancer?

Fortunately this is not a breast metastasis but a whole new cancer. It’s way better to have two unrelated local cancers than one cancer that’s metastasized, or spread to distant organs. That said, I’ve heard of several people who got this cancer following breast cancer treatment and as I’ve written before, the body is a strange and complex ecosystem we don’t fully understand.[2] 

3.       How did you find it?

The vision in my right eye got blurry. It took me a while to realize that a lot of squinting and eye rubbing wasn’t doing any good. I went to my eye doctor, who pronounced the situation “very ominous” and sent me to Anchorage post haste for further tests and referral.  

4.       What’s the prognosis?

Most people with relatively small tumors like mine who receive the treatment I received don’t experience recurrence or metastasis. I may learn more when genetic studies of my tumor are complete but I feel pretty good about my risk of metastasis being low.  

5.       Will you lose your sight?

My left eye will be fine. The vision in my right eye is affected by the tumor and will likely deteriorate further as a result of treatment. Because the macula is “involved” in the tumor (medical euphemism for totally engulfed, based on the computer simulation I saw), I anticipate kind of a black hole in the center of my field of view in the right eye. There are lots of people with limited or no sight in one eye and they say you adapt.

6.       What’s the treatment?

There were two phases: surgery to biopsy the tumor and prep the eye for proton-beam radiation; and – two weeks later – four doses of proton-beam radiation. Proton-beam radiation is essentially a higher-intensity, higher-precision form of radiation used to treat tumors near sensitive organs (i.e., the brain) and in children, where you really want to minimize collateral damage. The energy in the protons dissipates when it hits its target, sparing the tissue around it. Here’s how the National Association for Proton Therapy sums it up: “As a result of protons' dose-distribution characteristics, the radiation oncologist can increase the dose to the tumor while reducing the dose to surrounding normal tissues.”

FYI: Surgical removal of ocular melanoma isn’t advised because cancer cells can be dislodged in the process. Chemotherapy is not standard of care unless it’s metastasized. Removal of the eye is advised in some cases, such as with very large tumors.

7.       What was the treatment like?

WARNING: I love talking about this, but if you’re squeamish you should skip this part.

In surgery, the doctor cut open my sclera, the white outer layer of the eyeball. This enabled the surgeon to roll my eye over, stick a needle in the tumor to collect some cells, and sew four tantalum markers to my eyeball to indicate the location of the tumor. Tantalum is a nonmagnetic metal alloy, which makes it TSA and MRI safe. But it shows up on x-rays, and the radiation oncologists x-ray the eye and use the location of the markers and a bunch of other measurements and computer modeling to develop a customized radiation plan.

The radiation team also makes a mask and bite block for each patient to make sure the protons hit the exact right spot. It’s kind of Phantom of the Opera-esque – see photo below.   

The cool thing about proton-beam radiation is it requires a particle accelerator. This means I went daily for four days to the Crocker Nuclear Lab at UC Davis to put my eyeball in the path of a beam of protons raised to nearly the speed of light by a 76-inch-diameter cyclotron. I’m not entirely sure what a cyclotron is, but the staff at Crocker are proud of it and of their relatively long history of medical application of nuclear science. I came to feel very fond of the place and the people there.  

Each treatment begins with a series of x-rays during which you stare at a flashing red light. Then the team adjusts you – 1.3mm this way, 0.5 mm that way, until they’re satisfied you are properly lined up. Then come the eyelid retractors – one of the radiation oncologists pulls my lower lid down and applies special tape. She does the same to the top lid, but since my tumor is low, she really cranks on the lower lid to try to get it out of the way. That’s the only uncomfortable part of the treatment, if you don’t count the recovery from surgery, which was brutal.

Then they all leave the now-darkened room. At this point my knees have been strapped to prevent involuntary movements, and my face is immobilized by the mask and bite block. I try to keep my breath steady and focus on the lilting South-Asian voice of the physicist: “Look at the red light … keep looking at the red light …”

I know that the effectiveness of the treatment as well as the risk of collateral damage depend in part on my ability to keep my gaze fixed on the blinking red light in the upper right side of my field of view. The actual proton-beam treatment lasts just over a minute and I feel nothing. They talk me through it via speaker, saying you are doing great … you are one-quarter of the way through … keep looking at the red light … you’re right on target… treatment is complete, we’re coming in now.

8.       Do you have to do more treatment?

No. I’ll need to get scans every so often, but assuming the cancer doesn’t metastasize, I’m done.

9.       What can people do to help?

Consider using a little bit bigger font when you email me. If you’re in Juneau, join me for outdoor adventures and be patient with my less-than-ultrarunner conditioning. Let me be of service so I don’t feel like a taker all the time. If you’re an Alaska legislator and you’re reading this, please pass a fiscal plan.

10.   Why you?

I often think of Annie Geselle, a Juneau woman who slipped on an icy sidewalk in front of her house one day, and experienced a life-altering brain injury. She told a reporter: “Someone once said to me, ‘Oh you must think, ‘why me,’ and I thought, ‘I never once thought that.’ It could happen to anyone, so why not me? Better me than someone who would say ‘why me?’”[3]

I can relate to Annie. For most of my life I have wondered, “Why am I so fortunate?” There are people living in cardboard boxes on highway median strips. I am keenly aware that by sheer luck I was born in a peaceful country to loving parents who provided a first-class education and a childhood free of fear and violence.

To this day, I have personally experienced only love and kindness in my life. When I left Dr. Breffeilh’s office after hearing, “You have cancer,” I walked down the hall into my friend’s pediatric clinic. Before you could say choroidal melanoma she had handed me a chocolate bar and was on the computer getting me a plane ticket. Friends took Alder with 30 minutes’ warning and no questions for what turned into a multi-day sleepover. Others held my hand through each medical adventure, while my Juneau neighbors, colleagues, friends and congregation provided everything from cat care to food to donated leave. The love and care are life-sustaining. I hope someday to give back a small measure of the grace – which I view as human more than divine – that my children and I have received.  

And now for the photo gallery, in roughly chronological order...

 

A huge bonus of this eye cancer thing was spending five days with my friend Khira and her family. Here we are the night before my surgery.

The day before leaving for my "radiation vacation" - adventure, friendship and beauty to fill my soul with strength.

White Vader preparing to take on the proton beam.

My friend Heather, and Alder with his new blue Mohawk, at Crocker Nuclear Lab. We spent at least an extra hour each day hanging out there, just because.

We were well fed thanks to Farmers Kitchen Café and Congregation Sukkat Shalom.

The bike rental guy told us Davis has the highest per-capita daily bicycle use in the nation. Take that, Portland!

We scared this poor turtle that wandered onto one of Davis' bike paths into peeing.

 



Zoom in to see tantalum markers sewn into the back of an eyeball.

---

[1] Ocular Melanoma Foundation, Understanding Choroidal Nevi, http://ocularmelanoma.org/choroidalnevus.htm

[2][2] See Cane toads, previous post about collateral damage and unknowns, http://alaskamamaruns.blogspot.com/2014/06/normal-0-false-false-false-en-us-x-none.html

[3] Amy Fletcher, Rebuilding A Life, Juneau Empire, http://juneauempire.com/art/2011-02-25/rebuilding-life