Now that I’ve calmed down a bit, I can get to the Advanced CM stuff–i.e., what happens when you get to the specialist’s office…or at least what happened at mine. This post was supposed to come before the “Pro Level CM” post, but frankly, I was too overwrought at the time to make a good show of it. Sometimes the emotion of the moment is far too strong to allow a chronological (or even rational!) approach…and, in my head at least, the only way to handle that much raw emotion is to write it out. “Pro Level CM” came first because it *had* to. 🙂
And before I get anywhere–I want to frontload my gratitude. The visit with my specialist (and everything that went down during it) wouldn’t have gone half as well without my sister, S. If you’ve got cancer, you *need* someone who can be your bulldog–someone who can read all the toughest information out there, who can digest it and catch all the little hinky bits (the parts where the writers elide over something they really *don’t* want to be truthful about). A bulldog is the person who can read all that scary s*** and come up with the *real* questions, the ones you can’t see because you’re emotionally overloaded by fear of the future (or the lack of it) and the fear of pain. Without a bulldog, you can become just another number in the system…and though the system tries its best to take care of you, it’s *far* too easy to get lost. More than once, I’ve caught myself saying, “If my ability to catch errors on the fly is the only thing standing between me and dying, I’m screwed.” In the pessimist’s analysis, that’s a true thing to say. But a bulldog can be your reason for optimism–the person who helps you remember that you’re *not* doing this alone, that someone else out there is helping you tackle this monster. For me, that person is S.
For many people, their spouses become their bulldog. For many, that *isn’t* the case. One of the toughest things about cancer thus far has been getting over my expectation (my assumption!) that my husband, D, would be my bulldog. He hasn’t been. And that should not become a dealbreaker. He has stepped up in so many other ways–keeping his emotional self together and his work steered straight, keeping our daughter laughing while putting medicine in my eye–he shouldn’t also have to be the guy who reads the gloom-and-doom and sorts through medical jargon thicker than snot. It’s frankly not what he’s good at. And he was brave enough to be honest about it. When I was in mid-angry-meltdown about something I’d read (the problem with CM is an almost total lack of information that *isn’t* clinical studies!), I demanded an answer from my husband on some rhetorical question or other. He looked me in the eye, and with the most pained expression I’ve ever seen, said quietly, “If you’re asking me to read and talk about all this stuff with you, I don’t think I can do it.”
At the moment he said it, it hurt worse than I thought anything could. It felt like he was abandoning me just when and where I needed him most. When something terrifies me, I study it–I read about it, think about it, attack it with my most powerful weapon…my mind. I don’t go hide somewhere and hope it all blows over. I attack that scary thing until it is dead dead dead…in my head, anyway. And when it’s dead in my head, I can go attack it in the real world without qualm or fear. Once I’ve wrapped my head around something, it simply can’t unsettle me. Cancer was feeling bigger than me, and I desperately needed someone else to attack it with their minds, too.
Thank God for my husband’s honesty. It made me reassess what I should be expecting him to do.
My sister is, frankly, better suited. She prepared for the visit with the specialist like it was an invasion of Normandy. She sent me pages and pages of questions with blanks to enter the information as I got it, printed copies of the articles she referenced, even left me places to write in my own questions as I came up with them (and I came up with a lot, too). The funny part was, we each came up with a battery of questions and neither of us repeated the other’s work. We’ve always been Night and Day that way–two good, tough minds going after the same problems the same way, just from *totally* different directions. 🙂
In short, it makes the best kind of sense that she should be my bulldog.
Thanks, S. You’ve been my saving grace more than once. And you’re the only person on the planet who gets how much of a compliment it is to be called a dog. 🙂
The initial visit with my eye specialist, Dr. Shildkrot at UVA, took almost five hours. My eyes were dilated and *stayed* dilated.
Lesson: You *will* need a driver, both before and after–preferably someone who can hold your hand if you’re freaked. If you have kids, make certain you have during- and after-hours childcare lined up for them (chances are, you won’t be meeting their bus). Bring *every* document and bit of imaging you have with you, and if you take meds in the middle of the day, bring those, too. Bring shelf-stable food and drink that will keep you sated but not jack your blood sugar up or down–think jerky or a couple nut bars of some kind, and a canteen or other drink that can be sealed. You do *not* want to be shaky when someone’s got your head in the ophthalmic examination rig and some sort of loupe fractions of an inch away from your eye. You also don’t want your drink getting spilled on any important documents or (worse!) on somebody’s computer. And lastly, don’t bother bringing “something to do while you’re waiting” unless it’s for your driver. You’ll be *far* too busy to warrant anything more than a page or two out of your favorite book.
I was examined–and I don’t just mean “look in my eye” kind of examined, I mean “complete standard ophthalmic examination of both eyes performed by a separate specialist with his/her own credentials”–by four (!) different people. My blood pressure was taken; every conceivable question about my medical history was asked, including an alarming amount of detail about family cancers (more on that in the “Genetics of CM” post later); and copies were made of all the images I’d already brought with me (and copies of my initial eye exams had *already been* forwarded to Shildkrot’s office by the ophthalmologist who had confirmed the initial diagnosis!).
Lesson: Get a copy of every image every taken of you *the redhot second it’s taken*. Ask the techs to burn you a disk. They’ll probably do so gladly. Getting a copy of the disk later will be like pulling teeth. I forgot to ask the techs at Shildkrot’s office to do so on that particular day, and I’m hating that now. 😛
No fewer than three new sets of images were taken of my bad eye (two photographic and one ultrasound–get used to big, bright flashbulb effects, being asked to stare at weird parts of the examiners’ bodies to get the proper camera angle on the tumor in your eye, and lots of sticky eye goop from where they roll the tiny ultrasound wand around on top of both your upper and lower eyelids!). For the photographic parts, I had to have my head in the ophthalmic rig again; the ultrasound was taken while I was lying on a bench, and the probe just rolled around (pretty much painlessly) on top of my eyelids. It got a little weird at times, given that the person wielding the probe sometimes has to get a little pushy; CM tumors are waaaaaaay in the back of your eye. Not to worry if the goop gets in your eye, by the way; it’s built to do that.
Lesson: The better you follow their instructions, the sooner you’ll get your head out of their rig and the sooner they’ll quit poking at your eyes. Hold bloody still, stare wherever they tell you to stare even if it’s way too bright, and if (like me) you have a hearing deficiency, do *not* be shy about telling them about it. They need to know about it to help them work, and to help you get the heck better and out of their office ASAP. If you know you have a real problem with people poking at your eyes, you may seriously need to consider Diazepam or some other mood-control drug to help you remain calm. Check with your specialist’s office first to make sure it won’t interfere with any of the medicines they’ll be putting in your eyes. But the only part of any of the exams that was actively painful was the tiny wand that the specialist will use to manipulate your eye in its socket. It looks like a Q-Tip made of plastic, and no, it doesn’t go under your eyelids–it gets mashed around your eye in the space between your eye and the socket, using the eyelids as a buffer–but your whole eye socket will ache for hours after he or she is done. Bring meds if you got ’em. Among other things, the doc needs to know what kind of space he’ll have to work with in surgery, and that wand is the way.
Once Dr. Shildkrot examined me, he confirmed the CM diagnosis. He went over my extensive list of questions one by one (God bless him, and thank you, S!). He even scolded a nurse who attempted to butt into the list with patient history questions for me. And then he told me that there was pretty much only option for a tumor of my size, and got me preliminary dates for two surgeries–a placement surgery and a removal surgery for a procedure called plaque brachytherapy.
Lesson: There are multiple procedures out there for the treatment of CM, but not every doc does them (shoot, not every *state* has someone who performs *any* of them! My hat’s off to folks who have to travel out of state to get treated).
Here’s a link for doctors (hopefully) in your area: http://www.ocularmelanoma.org/doctorfinder.htm
The possible treatments for OM are:
**Transcleral resection–cutting the tumor out by going in through the side of the eye
**IBT (iodine plaque brachytherapy treatment)–developed for things like prostate and testicular cancer, it means embedding a bunch of radioactive grains of iodine into a silicone and gold (literal gold!) shield that is then sewn over the tumor in the eye for a few days to a week and then removed
**Laser photocoagulation–in which a laser is used to zap the blood vessels leading to the problem child in your eye
**External beam charged particle radiation therapy (also called proton therapy)–in which a beam of radiation is used to zap the tumor
**Transpupillary thermotherapy–exactly what it sounds like, laser-cooking the tumor through the opening in your pupil
**Enucleation–the worst-case option, taking out the eye entirely
The size and location of the tumor, whether or not your doc has experience with the procedures (and access to the equipment to do them), and whether or not your insurance will cover it are *all* wildcards in that decision.
There are some really hardcore medical science papers available that compare the various procedures, and here are a couple my sister and I found:
But be forewarned. The upshot of all that nitty-gritty is the same thing the doc him (or her) -self will tell you: when you’re dealing with numbers as small as the number of CM cases in your entire country even over the course of several years (only six per every one million people, and that’s in Scandinavian countries where the rates of OM far higher than the rest of the world because of the genetics), the math will skew heavily based on a single patient outcome. The vision loss, metastasis risk, and other downsides of each procedure are as unique as the patients themselves. You can go *nuts* trying to compare and contrast the options. Your time would be better spent finding a doc you like, who is close enough to your home (or your potential support crew, be it family or friends!) to make your treatment and recovery as quick and painless as possible. There is nothing more damaging to my overall health than to give me physical pain that grinds away, day after day, week after week. I can handle damn near anything as long as I know the duration of any *physical* discomfort will be relatively short. You’ve probably heard the old Arabic saying, “It’s not the journey of a thousand miles, it’s the grain of sand in your shoe.” I can get through that journey just fine…but one grain of sand, g**d*** it to Hell and back if it’s in there for more than a few weeks at a time I get real low, real fast. By the time I’d been diagnosed with CM, I’d been dealing with numbness in my legs for over two months. My mental reserves for medical BS were already really low, and *then* I found out I had cancer. I felt my entire future contract to the literal “months to live” diagnosis, and I had absolutely no reason to think that was going to be the case. Cancer is a bastard, but people survive it every day. Why was I thinking like this already?
*That*, my friends, is what cancer uses to kill you: negativity.
Given that my tumor was right at the beginning of the official “large” category, Dr. Shilkrot let me know that my options for treatment were already limited to one: IBT. All but one of the other treatments are simply not aggressive enough, and the possibility of recurrence and/or metastasis was entirely too high.
IBT has some really nasty downsides. It’s radiation, for starters. It involves some level of quarantine from others (especially children), which can be *really* psychologically difficult. Both because of the radiation and the weight and size of the plaque (the golden shield), the damage to the eye can be bad. The eye can even end up having to be removed after all, if it gives you enough trouble (especially if the tumor doesn’t die, or another one pops up next to it). In short, it’s not a fun option.
So I immediately asked about enucleation. Because in the grand scheme of things, I’d much rather cleanly cut out my eye than risk metastasis just to keep (some) of the vision in a damaged eye.
Dr. Shildkrot’s response was to look alarmed and then thoughtful. After a moment, I realized he was trying to choose his next words *very* carefully. His answer: “It’s bad for long-term patient outcomes. Better to do the brachytherapy and attempt to save the eye.” In short, nothing says “cancer is winning” than to suddenly lose your eye. Dr. Shildkrot won’t do it unless there is *no* other way, because, well…remember that negativity thing?
That was sobering.
So IBT it was. My surgeries would be a week apart. During the week of brachytherapy, I’d need fulltime help with childcare, feeding myself and my family, driving, putting goopy medicine in my eye twice a day, you name it. I was effectively going to be able to eat, sleep, watch TV, and that was about it. During the week after removal, I’d be about the same–though I would no longer be quarantined in any way, and I would get progressively better.
The real wildcard would be, how much of my eyesight would I get back? When could I drive again? How long would it take me to be able to read again? Because I’m a writer…that’s kind of important to me. Luckily, I touch-type, but editing? How long?
And Dr. Shildkrot’s answer was, “No one knows. The reactions are as unique as the patients. But most people have a good idea of what they’ll keep about two weeks after removal. At six weeks, we will do our followup.”
“Why so long?” I asked.
“Because that’s how long it can take for the tumor to finally die. It can even continue to grow a little after it’s been irradiated, and do further damage to the eye. Your retina has already become a little detached. It could become more so after the brachytherapy has been completed. By six weeks, we’ll know best. And we’ll have the results from the genetic testing back by then, too, so we’ll do it all in one appointment.”
Yeah. My surgeries weren’t slated to start for another few weeks. Then one week of Hell, followed by one week of Purgatory, followed by an entire month of Limbo. Grain of sand, indeed. Or perhaps I should say, a grain of iodine.
Then the really bad information hit. “Before surgery, we need to make sure there’s nothing else going on in your body. Dr. Larner’s staff will contact you next week to schedule a PET/CT scan.”
Turns out, there was another entire appointment that I had to make, and I hadn’t even known about it before I’d walked into the room: a PET/CT scan and a followup with a radiation oncologist, to check if the CM had already metastasized elsewhere in my body, or if the CM wasn’t a primary tumor after all.
It’s a good thing I didn’t know what those two options meant just then, or I’d have bawled. (See my Genetics of CM and Metastasis post.) The nitty-gritty: if CM had already metastasized elsewhere in my body, my outcome would look like “two years to live” sorts of stuff. Or, worse, if the CM wasn’t a primary tumor at all, my outcome wouldn’t be “years to live”–it might realistically be months. Holy Christ.
But I didn’t know that then, and the PET/CT is a post of its own. All I could do right then was thank him and his staff, and head home to plan.