My Husband Has Cancer: Does It Matter What Kind?

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In the waiting room.

When I tell people my husband has been receiving treatment for cancer, many ask—almost reflexively—“What kind?”

After thoughtful consideration, much of it conducted in waiting rooms, doctors’ offices, and pharmacy lines, I’ve decided this is not the most appropriate, or helpful, response.

At fifty-seven, I am sometimes fixated on causes of death for folks my age and younger. Hoping, I guess, that I might avoid their fates if I just have the facts. Take a different route, get a second opinion, stop the unhealthy habit.

So I get it, the curiosity. I just don’t like it.

If the answer to the question “What kind of cancer?” turns out to be one of the more aggressive types, will you label my husband a goner? If it’s categorized as “lifestyle related,” will you condemn him?

Each time I’m asked this question, I’m taken back to occasions when I’ve inquired, or wondered, upon hearing such announcements from others. All the times I made assumptions. I hope I never do that again.

From where I sit now, in a chair beside my husband as he receives chemotherapy infusions or next to him on the couch as he rests after radiation, the only real question is, “What can I do?”

 

 

And Then a Crow Ate a Goldfinch. {Every patient has a story.}

img_6788I lose it about 4 a.m. on Wednesday. I think I scare the nurse a bit, for it must be like seeing his mother break down. That’s how young he is. And he is great at his job. Also, a doll.

“I need to draw more blood,” he says. “Another culture.”

This means taking a good bit of blood. How do I have any to spare? I start to cry.

He stands in the doorway a few seconds, unsure.

“I just need a minute,” I say, grabbing for some tissues. “I don’t think it’s all that strange for me to feel frustrated.”

It’s as if, as usual—I’ve done it all my life so I shouldn’t be surprised—I’m seeking permission. Approval.

“Of course,” he says. “I know it’s hard. We’ll get you through this.”

Oh, those words, precious boy. He doesn’t say they’ll cure me, or that it will be easy, or that he has answers. Just: We’ll get you through this. Pardon the cliché but it is just what the doctor ordered. (Or should have.)

Later Wednesday morning I feel a bit better, but there is still no diagnosis. Some big things have been ruled out. The hematologist tells me this happens more often than you might think, that an infection invades your body and you never know its source.

Then, toward evening, I see a crow eating a goldfinch. Right there on the ledge outside my window. I notice little bits of fluff wandering around the sky, and I see the crow picking at something at its feet. When it turns over its prey, there is a brilliant flash of yellow. I am mesmerized, trying to decide if this is a sign of some sort for me—the cycle of life and death and all—or merely nature doing its thing. And if it is the cycle of life and death, which will it be for me? I am sad and mesmerized by nature all at once.

I can’t get to my phone to take a picture and while I hear you saying, “Bless her heart. She was probably hopped up on good drugs and just imagines she saw a crow eating a goldfinch,” let me remind you that when I ask for some calming medication, I am given melatonin, people, not anything mood inducing. (And when I tell the nurse the melatonin didn’t really do the trick, I am given MORE melatonin.)

I decide not to take the crow incident as a sign and instead say a blessing of gratitude for all that nature–and man–is capable of. I go back to watching Gilmore Girls. I didn’t follow the series when it first aired and I am quickly becoming hooked. Hooked, I tell you. I want to dress like Lorelei (sp?), drink coffee out of bowl-like mugs, and matriculate at Yale. Somebody get me out of here…

My dinner is pretty tasty, and, ta da, is actually what I ordered. (Several times my order was not what I ordered and that was disappointing. Not a big deal, but when what you have to look forward to is a biscuit with turkey sausage and you don’t get it, it can seem like a much bigger deal than it would on a regular day, like when you don’t think you’re dying and there isn’t a crow eating a goldfinch outside your window.)

When I wake up on Thursday morning I am covered in sweat. Instead of being grossed out, I am delighted, as I think it means I am on the mend.

“I think my fever broke,” I text Precious.

“On my way,” comes his reply.

Several hours later the doctors tell me my white count is on the upswing, my fever is down, and I’m free to go. Still no diagnosis, and oral antibiotics and follow-up checks will be necessary. I’m a little scared to leave, actually, what with the not knowing and all. But apparently if I want to wait until I get some sort of definitive answer, a reason, I will be hospitalized for a very long time.

Although I have never believed in a puppeteer kind of God, a deity that picks and chooses who will suffer and who will flourish and decides which of us needs to learn a lesson and which folks can afford to skip class, I must say I’m trying to see this experience as a learning opportunity for me, in that I have long been one who wanted to figure everything out, to have a cause and effect that I could grasp. To understand. Even if it was bad, I’d say, I want to know. And now I don’t. I am being called to lean into the mystery, so lean I shall.

 

“This Could Be Serious” {Every patient has a story.”}

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I don’t have to wait long to be seen—maybe because I’m so sick or maybe because the doctor from the walk-in clinic alerted the ER, as she said she would—but I am in the waiting room long enough to be reminded what a microcosm of the human condition the hospital is: All walks of life brought together by all sorts of maladies. People whose paths you quite likely would not cross save for the fact that you are all in need of medical attention.

One woman complains that others, who came in after she did, are being seen before her. Another alerts us to the children who are playing with plastic spoons near an electrical outlet.

“If those were metal those kids would get shocked. Electrocuted, maybe.”

An older man eats a hamburger, a teen texts, and I think I recognize a lady from my church. There is just enough time for me to begin (okay, so I’ve been doing it since I woke up) ruminating on chance, luck, Divine purpose, the vagaries of life, before I’m called back by a nurse.

I’m put in a room, and the blood draws and IVs are underway almost immediately. My nurse, the first of several, is lovely. She talks me through everything she’s doing. I feel so bad I don’t really care what they do to me, but I appreciate her treating me with respect.

This is what I am thinking: This is how people find out they’re really sick. Someone’s husband is parking the Subaru with the dog slobber on the backseat windows and a doctor comes in and says something life-changing. On an otherwise normal day, people get bad news all the time. This is how it happens, without fanfare or warning or your loved one having time to get back from the garage. You have a fever and no energy and your life unravels. The old “Why me? Why not me?” toss up.

I begin to weep.

It’s an actual room, not just a curtained corner, so I do have privacy, which is nice. When it’s determined that I’ll need to be admitted, and there’s not a room available, the nurse has a hospital bed brought in, so I can get off the thin mattress that reminds me of the fold-out mat I used in kindergarten at naptime. It is a thoughtful thing to do and I am grateful. Any comfort–like the nothing short of a miracle shampoo shower cap–in this storm feels like a life preserver.

There is a lot going on out there.

Someone (as I make my way to the bathroom later I see a policeman in the hall) yells for a man to get back in his room. Apparently he doesn’t realize that being under arrest means you can’t just go tooling around the ER willy-nilly.

Several medical professionals come and go from my room. I am asked the same questions by different individuals. I think my answers are pretty consistent: Been feeling a bit poorly for a week or so but not alarmed until this morning; no I haven’t been out of the country; no I didn’t notice a tick or a rash on my body; yes I get yearly physicals; no I haven’t seen blood in my urine; no I don’t smoke.

One man, let’s call him Doctor X (not his real name) shall we, pulls a chair close to the bed and gets even closer to my face.

“Ms. Wilson.” Pause. “What do you think is wrong with you?”

His tone makes me feel like a kid, when my mother would ask me, “What do you think you did wrong, sweetheart?” (For the record, she did not have to ask me this often as I was an exemplary child. Or so the story goes.)

“I have no idea,” I say, when what I am thinking is more along the lines of, “If I knew, I promise I’d tell you. If I had a nagging suspicion, a mere inkling, any semblance of intuition, a scrap of insight, I’d share it with you.”

He makes me feel as if I am holding something back, as if I don’t want them to know everything they need to know in order to figure out what is happening with my body.

“What about HIV? A lot of times these low white cell counts indicate HIV.”

“I don’t think so,” I said.

“You’re not at high risk, you don’t think?”

“No sir.”

“Multiple sex partners? Drug use?”

“No sir.”

I don’t have the strength for regaling him with all the reasons I don’t think I’m a candidate for HIV, and I feel so bad I start to think maybe I’ll be some fluke case of contracting it. It could happen, I guess. I don’t have an issue with the testing; test away. I have an issue with the delivery. Why not something like, “It’s standard for us to test for HIV when we see such low white counts.” More equalization; less shame.

“Okay, well. You need to know that this could be serious.”

Again, maybe you could try: “We don’t know what’s wrong with you but we’ll do everything we can to find out. It could be an infection, or it could be something more serious.”

So, um, Doc, I’m already convincing myself I might be dying. I’m in the ER, so I get it, that this might be serious. To me it already is. I’m way ahead of you.

Doctor X leaves and comes back so fast I’m surprised he had time to turn around.

“I’m testing you for HIV.”

“Okay,” I say. “Fine. Of course.”

An Otherwise Ordinary Day {Every patient has a story.}

The next several posts will be about my recent hospital stay for what has been deemed “an acute infection of unknown origin.” I’m writing about my experience in order to process what happened—and is happening—to me.                                                                                    

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I would swear I had a neck when I came in here.

After several days of feeling “not quite right” I wake up and know something is terribly wrong.

“We have to go,” I croak to Precious. So we drag my exhausted self to a walk-in clinic, whereupon I am promptly instructed to go to the emergency room.

“You have neutropenia,” says the doctor. “Something we often see in cancer patients. You’re not a cancer patient, correct?”

“Correct.”

“You have a fever of 101 and your white blood counts are low. You need to get to the ER, now.”

I start to cry, that’s how bad I feel, how frightened I am becoming.

Precious drives me to Vanderbilt and I resist the urge to Google scary diseases on the way. Thankfully I don’t have the energy for it.

I have long been a person who says she “wants to know, even if it’s bad,” but right then I am not so sure.

The nurse at the ER put a mask on me, and repeatedly expresses her surprise when I tell her, repeatedly, that I am not undergoing treatment for cancer.

“No,” I say. “I’ve never had a cancer diagnosis.”

I am convincing myself, of course, that I’m about to get one.

Show Me Your Scars and I’ll Show You Mine

IMG_3730.jpgI didn’t realize I was sick back then—just miserable. I knew I didn’t belong in law school, though everyone around me said I did. Problem is, you don’t drop out in my family. Wilsons persevere.

“I think something’s wrong with your thyroid.” This from my mother at the Thanksgiving table after my dismal semester. Turns out a goiter had sprouted in my neck and I hadn’t even noticed. That’s how out of touch I was with myself, people. (Google “goiter” at your own risk.)

“You better go see Doc Murray when you get back to Oxford.”

I did and it was. The kindly and charming old-school doctor sent me to a specialist, a not kindly and especially uncharming man, who glanced at me and said: “Most times this is cancer.”

My twenty-two-year-old self started crying and ran to call my parents.

“Come home,” they said. So I did. We got another specialist. A nicer one.

After the surgery to remove half my thyroid gland, I didn’t really mind the scar, even early on when it was angry and red. It proves I can weather the storm, if you will, that’s the way I see it. Cliché or no.

“I can fix that for you,” said a doctor acquaintance at a party not too long ago. He was tilting his head toward the base of my neck and stabbing for an olive with one of those plastic cocktail swords. Red I think it was.

“Fix what?” I asked. I wasn’t even trying to be coy, as I don’t think about the scar, which looks a little bit like a short, braided rope.

“Your thyroidectomy scar. The surgeon should have done a better job. You know, so it wouldn’t be so noticeable.”

Maybe your mother should have done a better job with you, I wanted to say. You know, so your personality wouldn’t be so bothersome.

“I don’t want it fixed,” I said instead. “But thank you for your concern.”

Besides the small rough patch on my right hand—a neighbor’s German Shepherd jumped up on me while I was riding my bike (boy was I proud of that banana seat) and I ended up in a puddle of gravel—I don’t have other visible scars. (I’ve had more surgeries, laparoscopies and such, but no additional physical reminders of trauma.)

My mother, bless her precious 93-year-old heart, is riddled with scars: colon cancer, mastectomy, gallbladder, vena cava filter, skin tears every time her body tricks her into thinking she doesn’t need to use a walker and she pitches to the floor.

I don’t know if she minds her scars or not. I could ask her, but the answer might not be based in reality, as dementia is robbing her of such. She doesn’t seem to mind them, though, or much of anything, actually. Instead she comes across as content, happy even, in the moment. She no longer seems anxious and does not spend her days borrowing trouble, a favorite pastime of hers that I’m sorry to say I have inherited.

Usually she just smiles, asks me if I’m her baby, and rolls herself into the dining room to join the other old souls who can no longer live on their own.

“Yes, ma’am,” I say. “I am.”

Scars and all.

Amy Lyles Wilson

Writing Prompt: Read Lucille Clifton’s “Scar” and write about what it brings up in you. Write for 20 minutes. I’ll set the timer. Go!

http://www.sunsetcoastwriters.com/blog/scar

MayBelle Gets Labeled {On Being Called “Obese”}

IMG_1913MayBelle was proud of herself for figuring out how to sign up for her doctor’s web-based information system, so that she could schedule appointments online, request prescription refills, and access all sorts of other helpful materials, like maybe how to get rid of night sweats and hot flashes you’re still having some three years after being told you’ve “gone through” menopause. (Can you say “vaginal dryness,” anyone?) So imagine her disappointment when she logged on today to arrange a follow-up visit and found the following in her file: “Mildly obese.”

MayBelle quickly double-checked to make sure she hadn’t accessed another hapless patient’s account, like, you know, someone who is, well, fat. Still MayBelle.

Now MayBelle is keenly aware she needs to lose a few pounds but deliver me, she said, looking around the room to make sure no one else had seen those two life-changing words.

“Those doctor’s office scales always seem to weigh me heavy,” she said, pulling in her stomach and sitting up just a bit straighter.

For a minute or so, MayBelle thought about going to buy a pie at the farmer’s market, or eating some cookie dough she just might have stashed in the freezer.

“Mildly schmildly,” she thought. “I’ll show that doctor from obese and move right up to ‘moderately.’”

Apparently once you’ve been labeled “obese” you don’t place much import on qualifiers.

But MayBelle knows that’s not the proper, or healthy, reaction. So instead she logged off, took a deep breath, and texted her trainer.