My parents just left after three weeks of living with me, fielding my daughter and husband, cooking meals, cleaning house, going grocery shopping, and generally being the all-round kick-ass people they’ve always been. I’m on the mend and (almost) to a point where I can see the “normal” in a so-called “normal day.”
Without them, I wouldn’t have gotten here so quickly.
I ache for other cancer patients. Physically. Mentally. Emotionally. To go through round after round of chemo and radiation. To put their lives on hold for months at a time. I’ve merely been through the wringer for a few weeks, and all I can think is, My God, but cancer sucks. I can’t begin to describe how viscerally this disease saddens me. I merely thought I hated it before–having lost three grandparents to it, one to bladder cancer, one to a brain tumor, and one to breast cancer that metastasized to her brain–but all my roiling emotions at the time were small in comparison.
I have only dipped into cancer for three weeks of treatment, and it is a level of Hell. Hell because of the competence and ease and comfort I’ve lost; Hell because of the way my world has contracted, from wide-open and free to tiny and pained; and Hell because of the way those things extend to everyone far beyond just the person who’s suffering. And *that’s* the part that saddens me most. I’d gladly remain in the hotseat if I could somehow spare all my family and friends the layers of damage that ripple outward from there.
I am so very, very grateful for my family. Weeping grateful, in fact. (Doing so right now.)
An old friend of mine once said, “If my mother had been completely honest with me about what pregnancy and childbirth are like, I would never have done it.”
Well, dear reader, I’ll warn you right here and now: don’t read the rest of this post if you’re about to go through plaque brachytherapy for CM. If you have one iota of imagination, this post will make you run away from “treatment” as fast as you can. This is not because of some fault with my doctors or the care I received (although there were definitely some SNAFUs and a questionable call or two–more on that later), but simply because the only “commonly” available treatment for CM is, frankly, medieval. There is no such thing as a pleasant medical procedure, but anything involving the eye is by its very nature invasive, painful, and debilitating. I will do my damnedest to keep my descriptions honest and not too histrionic, but (being honest here) I have some PTSD to work out after all this mess. Having had a close relative in the Army, I know exactly what PTSD looks like from the outside; now I know what it feels like from the inside, too.
My journey started weeks earlier than it was supposed to, which was a bit of a curse and a blessing. The doctor’s office decided to move things up by two weeks, which meant that I suddenly had *five days* to line up childcare, rides, in-home help, and insurance solutions, when originally I was supposed to have three weeks. It was bad, obviously, to have so little time to get stuff done; but good in that I was getting treated quicker, and it left me no time to mentally stew.
You can imagine what those five days were like. I lost count at more than 29 phone calls to get basic insurance coverage questions answered and a far more complex issue resolved (Because that’s *all* I wanted to do after I got diagnosed with cancer: I really wanted to wade through telephone trees and talk to insurance agents and re-explain my condition and its treatment multiple times over the course of two eight-hour days. I really didn’t want to do things like hug my kid, or make love with my husband, or drive my car around town just because I could and I wouldn’t get another chance for over a month. I wept every time I hung up the phone and realized I had to dial again.). In the press to get everything in place before my deadline, many of my friends found out by Facebook and one very old friend didn’t find out at all until two days before–and even then, only by accident. Terrible. I ended up consoling all of them.
Insurance Sidebar: I’ll give the information I discovered here, just because it might save someone else those same 29+ calls. But beyond this sidebar, I will not discuss insurance anymore, because it’s frankly a soul-sucking bastard of a system and deserves to be scrapped with prejudice. So… The *only* radiation oncologist in the state who could do the work on my eye was, of course, out of my coverage network. If you have this issue, and you are part of a group coverage plan (your insurance card has a “group number” as well as a “member number” on it), you will need to talk directly to your insurance company (e.g., BCBS) *and* the group manager for your workplace’s coverage (or however you got your insurance) and apply for an “in-network group exception” for that doctor’s services. Once you’ve hit your maximum out-of-pocket dollar amount for all your medical services for the year (and trust me, with cancer, you’ll hit that really damn fast), you will then need to call up that doctor’s office directly and ask them if they will “accept assignment.” In the state of Virginia, it’s totally legal for a doctor to bill you directly for anything above and beyond what the insurance will pay for their services. However, if you call the doctor’s office and ask if they’ll accept assignment, what this signals to them is, 1) your insurance is maxed out, 2) you have no money for medical bills beyond what insurance will pay, and 3) if they try to bill over and above the insurance payouts, they will have to get their money from the state because they sure as Hell won’t be getting it from you. It’s basically a polite warning from you that you’re a normal human being with a normal job and that you don’t have eternal bags-of-holding for pockets. There now. Nuff said about goddamn insurance.
But once my parents had arrived and my husband’s time off was approved and the plan for my surgery days was in place (at t-minus less than twelve hours), a strange sort of serenity crept in. Like it or not, whether something was finished or not, whether my house was clean or dirty, this thing was going forward. We could just hug each other, and pray in our own ways, and get the job done.
The first surgery was a no-brainer, honestly. I followed my NPO orders to the letter; went in; they found a vein on the second try (I was braced for worse); they knocked me out; next thing I knew, I was waking up to the nurse and doc saying everything went well and my husband would be in soon. I couldn’t even feel what had been done to my eye. What more could a girl ask for, right? Yes, I was groggy, no I didn’t really want to eat all that much (graham crackers and a can of Sprite felt like a total decadence), but the pain was quite manageable. I even walked to the van. I went home with a solemn assurance that the first 24 hours would be the worst, that I wouldn’t have to mess with my eye at all until I came back for the 24-hour followup with the doc, and that I’d come back a week after that for a second (far more minor) surgery to remove the plaque, and all would be hunky dory.
Then the rubber met the road.
What I didn’t know was that the anesthesia was taking a *lot* more off my pain than I realized. The pain was a bell curve that started at zero right after the surgery, and peaked at three the next morning. My pain reliever of choice, NSAIDs, turned out to be disastrous. My eye swelled like a sonofabitch. So much so that my eyelids puffed out and turned my eyelashes inward toward the surface of my eye. For me, having even one loose eyelash in my eye is a form of torture. Having my entire complement of eyelashes, still attached, scrubbing the surface of my eye *and* parts of my stitches every time I looked at something with my good eye (because the damaged one still wanted to track with it) was agony.
Then my eye swelled so far that the top bone of my eye orbit dug into my eyeball itself. It was literally swelling out of the socket. The pain was so much I could no longer tell where the plaque and the stitches were, and where my eyeball was grounding out at the bottom of my eye socket from the weight of the plaque. It became a single massive locus of pain that encompassed the entire left side of my skull.
Rationally I know you can’t see radiation, but when I let my good eye go to a soft focus, the black space where the sight from my damaged eye should’ve been turned purple. Bright f***ing purple, shot through with the weirdest repeating pattern of zigzags I have ever seen in my life. It looked like aliens were sending me signals. I had a several-ounce lead shield strapped to my face with nothing but paper tape, physically holding my eyeball in my head; I had a bright yellow band on my arm that identified me as a radiation risk, and contained instructions for first responders on how to deal with me in case of emergency (for *their* safety, not mine); I had strict instructions not to so much as bathe for the next 24 hours; and, worst of the worst, I couldn’t hug my kid for the next week. I couldn’t even be within six feet of her. The look on her face when she got off the bus and couldn’t touch me was awful. I was so far outside of “okay” that I couldn’t even see there from where I was…and that was *before* the pain.
That three in the morning was the worst of my life. The pain reduced me to a dumb animal, only able to feed myself morsels of food and water and painkillers, and breathe. I just held my head up with one hand and rocked. I’d have whimpered, but it hurt too much. I was too terrified to cry.
The next day, the nurse who unwrapped my eye for the first time looked stricken. Even that much movement hurt like Hell, and I still had the doctor’s entire exam yet to go. I asked her if it was a good idea to take the single dose of Valium I’d hoarded a few weeks prior; I had it with me that morning, because I was in such pain that even the idea of someone unstrapping my eye made me shake. She looked at my eye again, winced, looked at my shaking hands, and said, “I think that’s probably a good idea.”
I had to put the lead shield back over my eye and hurry through the office to avoid dosing the nine-year-old patient in one room.
The doctor hissed when he saw my eye. Then he said I was having a lot of swelling, and asked how I felt. I looked at him and said, “Is it normal to feel like my eye has been folded in half and set on fire?” He grimaced, and nodded guiltily. Then I chuckled a little bit and said, “Then I guess everything’s normal.” (It’s amazing what Valium can do for me.) He strapped me back together, told me to pick up some T3 instead of NSAIDs, and said to call him if the pain outstripped the T3 or if my eye bled for more than five straight minutes.
I poured myself back into the van for the 90 mile ride home and wished that I could cry.
The next week could be summed up with this: two hours awake, two hours asleep. Punctuate that schedule with enough food to keep me from throwing up the T3. Watch a little TV. Give myself a baby-soap bath twice a day to give me the illusion of cleanliness. Unstrap my eye twice a day to somehow lever a line of gritty ointment into it to keep it from infecting and “to soften the stitches” (my wide, bright ass! Sorry, did I write that out loud?). Feel guiltily grateful that my daughter was at school and not staring at me with the same crumpled look she’d had when she got off the bus that first day and I dodged her hug. Promise myself that I would remedy that crumpled look the redhot second I got the iodine back out of my f***ing head. Lather, rinse, repeat.
Then the day of the second surgery arrived. We were all grateful, my daughter and me most of all. I promised her I’d hug the snot out of her as soon as I got home. I grinned as we drove, even though I hurt like Hell. I’d followed my instructions to the letter again (“clear liquid diet”), and was ready to go. I even had a little broth that morning, so even though my surgery wasn’t until after two that afternoon, I would be hungry but not hypoglycemic shaking. They should be able to find a vein just fine. We get there, I get in the gown, and they’re in the process of setting the IV when they ask about what food and drink and medications I’ve had. I tell the nurse, and her face falls.
“No broth,” she said. “You can’t have protein of any kind. Who told you you could have broth? We might not be able to do this today.”
At which point I really wished I hadn’t already used that last Valium.
Turns out, “clear liquid diet” is NOT the same thing as the liquids that are on the fly-list for removal of a radioactive plaque. That list is basically lemon-lime Gatorade or clear sodas. Full stop. Even if it’s one of the surgery nurses who uses the phrase “clear liquid diet,” don’t f***ing believe it. (Remember, this is the same office that neglected to tell me that a PET/CT scan is NPO. Batting 0 for 2 on important information here, people.)
After an excruciating wait (at which point it was well after three in the afternoon and I hadn’t had anything to eat since the previous midnight and nothing to drink since ten in the morning), I was finally allowed to go forward with the removal surgery.
Now, here we have to pause for a very important public service announcement. I will endeavor to make this as clear and succinct as I can.
IF THE SURGEONS OFFER THE COMBINATION OF VERSED AND A NERVE BLOCK (INSTEAD OF GENERAL ANESTHESIA) TO DO EITHER THE PLACEMENT OR THE REMOVAL SURGERY, DO NOT TAKE IT. REPEAT, DO NOT TAKE THE VERSED & BLOCK OPTION. Unless general anesthesia presents a very real danger to you (like your heart stopping or your lungs giving out or you have continuous vomiting afterwards), you *want* GA. Period. Full stop.
Because here’s what happens if you don’t.
I was wheeled into the OR itself–a place no one but a surgeon or a nurse should ever have to actually *see*. The bright lights, the instruments laid out, the small army of people. I had to lever myself from one gurney to the other (no mean feat with an IV set rather painfully in one hand, veins prone to blowing out, and numb feet to boot). They knocked me out for the two minutes required to do the nerve block injections (which are apparently very painful–so painful the patient has to be knocked out anyway. And that won’t hurt at all when said patient wakes up, right? Right? RIGHT?). And then, when I was awake again and answering the doc’s questions, the Versed was injected into my IV. All was ready, right? Right?
The docs both sidled up to my head, instruments in hand, and I could still see them both. The moment they leaned in, I said, “Um, doc, I can still see you just fine.”
Which was when the doc looked a little taken aback, gestured to the anesthesiologist, and the view from my bad eye went bright white, like looking toward the sun on a bright day. Unfortunately, that also meant that, like the sun on a bright day, there was *great* contrast.
I can tell you exactly how many people there were around my head at any given time; I can tell you which instruments they used and what shapes they were; I can tell you what eye retractors look like, and that they’re white (probably porcelain over steel, if I had to guess); I could tell which parts of my eye they were working on at any given time (kinda hard to miss; my good eye was draped, so the only view I had of the world was, shall we say, “surgery cam”–from the goddamn inside out). I could feel the tugging and popping of the sutures as the doctors worked. I was just beginning to draw breath to tell them to get more goddamn drugs on board when they finally finished. The only thing in my favor was that Versed makes you *not care* that all that is happening right then.
IT DOESN’T DO A GODDAMN THING TO HELP YOU WITH THAT KNOWLEDGE LATER ON.
It also doesn’t work as a painkiller. When you’ve got a 90 mile drive home that starts and ends in rush hour traffic, you’ve had no solid food for almost sixteen hours, AND THE STAFF HASN’T TOLD YOU TO MAKE SURE YOU HAVE PAINKILLERS WITH YOU BECAUSE THE SURGERY DRUGS ARE GOING TO WEAR OFF IN ABOUT A HALF HOUR…
…this doesn’t go well.
In short, I had the entire accumulated weight of two eye surgeries and a week of radiation treatment hit me all at once only half an hour into a nearly two hour *rural* drive. I couldn’t have stopped for painkillers even if I’d thought to. There are no stores through a lot of that drive. I was in such pain that all I could do was kick my seat back a little and massage my forehead continuously. I was, once again, too terrified to cry.
To this day, almost two weeks after removal, I can tell you *exactly* where those nerve block injections went in. My forehead and eye orbit hurt like someone smacked me with a hammer. At times half my forehead goes numb and on fire at the same time, and if I’m wearing a taped dressing over my eye when it happens, it feels as if every cell of the taped skin is being pulled apart from the next cell and everything in between is lit on fire, too. I’m *still* massaging my forehead continuously. I asked my mom to feel my forehead during one of those episodes to see if the skin really was hot to the touch; she gave me a skeptical look, but then gamely put her hand across my forehead. Then she looked shocked. “It’s *cold* there!” she said. “Really cold! Almost like there’s no blood in it.”
I’ve since spoken to others who have had nerve blocks of various kinds for various reasons. They’ve all said that my experience isn’t abnormal–and that it can take months, even years, for the sensations to quit happening.
There’s only one person that the nerve block and Versed combo benefits, and that person isn’t me. It’s the hospital. It’s cheaper, and gets you out of there faster, with “fewer complications.” Fewer complications my ass. It’s just that the complications happened after I was off hospital property, and the hospital doesn’t have to give a damn then.
The week after removal looked a lot like the week of placement. Lather, rinse, repeat. The difference was that I could hug the snot out of my kid, wake up for progressively longer intervals, eat progressively better meals, and watch progressively more TV. I also got better baths and showers, and reduced the amount of painkillers I was taking to the occasional Extra-Strength Tylenol. I even went apple-picking one day. It rejuvenated me to see a sunny, beautiful world, even if it was with only one eye. Hearing my daughter laugh (and squeezing her hard every time she walked by) helped most of all.
The last week has been about leaving the bandages off my eye as much as possible; forcing my eye to get back in line with its buddy (which, after a week of “double vision”–my ass! It should be called “chameleon vision”!–it’s finally beginning to do); and looking forward to the day (perhaps next week?) that I might be able to drive again. It will have been since October 26th. For a woman as fiercely independent as I am, that’s *long* overdue.
So that’s the journey. It’s a hell of a thing, isn’t it? What takes my breath away is knowing that, for all I went through (and may yet go through–I find out the biopsy results in December), it’s absolutely *nothing* compared to what so many cancer patients go through for months on end. It’s humbling. It’s awful. It makes me want to weep with pain for all of us suffering from this bastard of a disease.
But more than anything, today I weep for gratitude. For my parents, my sister, my husband, my child, my friends. For the unutterable sweetness of the love they give me freely every day. And even for the experience itself. As Evan S. Connell once wrote, “I am gathering in order to collate what must otherwise be lost to the maelstrom. Tenderly, with a sense of profound obligation.” This gratitude is something that shouldn’t be forgotten, a lesson that shouldn’t be squandered. It’s the gratitude that gives all that kvetching in the middle of this post a purpose–that if even one person is spared pain through reading my experience, it’s worth it. I’m grateful for it. I will never again hear that someone is suffering cancer and think, “Wow, I’m so sorry for them” and then go blithely about my day, forgetting. I will ask, “What can I do?” Because I will remember these weeks, and this pain, and this debility. And even if they thank me and say, “Nothing, thanks, we’re okay,” I will still go home and hug my kid. I will live the rest of my life (however much of it I have) with a visceral understanding of the things that really matter…and the things that really don’t. Cancer is a watershed; like losing one’s virginity, like graduating, like getting married, like having a child, there is all that came before, and all that comes after. The only things that survive the “after” of cancer are the things that spring from gratitude.
That is all. And that is enough.