On Being A Survivor: Not Dead Yet

It’s hard to believe it’s already the 10th of October. The days are flying by and I feel like Alice in the Red Queen’s race  in Lewis Carroll‘s Through the Looking-Glass where the Red Queen and Alice are constantly running while staying in the same place.

“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else — if you run very fast for a long time, as we’ve been doing.”

“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”

The Red Queen’s race from “Through the Looking Glass”

I know I’m retired, but where is my spare time? How did I ever find time to work?

Today marks the 2nd anniversary of my double mastectomy. Like someone falling from atop a very tall building who hasn’t yet hit the ground, I say “So far, so good.” Supposedly, if you survive for five years, you are reasonably likely to survive for five more. That makes me 40% of the way towards being half-way likely to have a normal lifespan. Unless something else gets me. Just because you’ve had breast cancer doesn’t mean you aren’t going to get another kind of cancer or die of a heart attack. My first husband survived kidney cancer only to die of heart disease. Some people are just lucky.

I feel fine, or as fine as my advancing arthritis and other assorted ills allow. I also felt fine when I had cancer in both breasts, so feeling fine could easily mean that whatever is killing me, I don’t know about it. Yet. One of the reasons cancer is so dreaded is its lack of early warnings. By the time you have symptoms, it’s too late. I had a double mastectomy so I’m unlikely to get breast cancer again. I don’t have breasts. If I get something, it will be fought on a different battlefield, like my lungs, stomach or pancreas.

I come from a cancer-riddled branch of the family tree. My brother died of pancreatic cancer five years ago. He was younger than I am now. My mother, at my age, was on round three having already lost both breasts in previous bouts and in that final dance, the cancer had migrated to anywhere her lymphatic system could carry mutated cells. A few years later, she was gone. I look in the mirror; it’s eerie how much I  look like her.

I don’t usually dwell on my odds of living to a ripe old age. It’s pointless. Statistics are based on a lot of people who aren’t you, don’t have your history. That’s why you’ll never get an oncologist to give you an answer to the question “What are my odds of beating this?” They don’t know. They can quote statistics, but they know better than anyone how meaningless statistics are.

Despite the dice being heavily loaded in favor of cancer winning the final round, cancer hospitals do virtually no screening for early detection. They won’t do anything unless you make so much noise you manage to overcome their protocol. ALL protocols are based on statistical formulae. Every hospital has its own protocol. Some perform a few routine tests, but many, including Dana-Farber, do not. Whatever the protocol in place for your institution, every oncologist based there will follow it with religious ferocity, regardless of how absurd it may be for you.

Red Queen
Red Queen (Photo credit: Omnitographer)

The day you are diagnosed with cancer, you enter a tunnel. You have no choice about where you’re going or how you will get there. You will just do what you are told until you are “in remission” or dead. Cancer patients aren’t people. We are “cases.” Maybe that’s how oncologists cope with their jobs. It can’t be easy. Regardless of your medical history, they will doggedly follow the protocol and will not deviate. At least not without one hell of a fight.

Dana-Farber is a fine institution, but they have a protocol that says screening is a waste of money, so you wait until you feel a lump or have symptoms indicating something is wrong. I passionately disagree with this approach. It’s stupid.  Getting my doctor to deviate from it (which I did, but not easily) was ridiculously hard. I succeeded by becoming such a nuisance it was easier to give me what I wanted (a chest CT) than keep fighting. I have been sick a lot and know that passivity can be a death sentence. If you want to live, you have to step outside the natural tendency to assume that your doctor always knows best and recognize that you’ve lived in this body a long time and know it better than any doctor possibly could. That many doctors refuse to recognize that patients know what they are feeling and know when something is “off” is infuriating and dangerous. I’d like to say that they dismiss women more than men, but I don’t think that’s true anymore. It was, but now they treat everyone as if they are stupid. Equality has been achieved.

Call me crazy, but isn’t early detection the gold standard in cancer care? Without screening, how early are you going to detect anything? Just a question for you medical types out there.

In theory, I have a good chance of never getting this cancer again. It was caught while both tumors were small. Both were a type of cancer (but not the same type) that are slow-growing and not very aggressive. As far as anyone was able to test, there was no sign of it having spread anywhere and the surgeon, who is very good, left wide, clean margins. Margins are very important in cancer surgery. You get to learn all about this while being treated. But, as one cheery oncologist so aptly put it: “It just takes a single stray cell.” He smiled. This is what passes for a joke in the cancer business.

I heave a great sigh. I can’t pretend it doesn’t bother me. Of course it bothers me. I’m not stupid. My mother died of breast cancer and my brother of pancreatic. Both maternal grandparents died of cancer too. It doesn’t take a genius to recognize a pattern. Survivor means you aren’t dead yet. Like being an alcoholic, even if you’ve been on the wagon for decades, you aren’t cured … you’re just in remission.

Last March, just as I was about to turn 65, I went for my quarterly dose of terror. All went as expected and Garry and I were in the car on the way home when my cell phone rang. It was my oncologist.

“You have to come back.”

“Why?”

“We need to rerun your blood tests.” I hate blood tests. I have no veins.

“Can I come tomorrow? We’re half way home …”

“No, come now. Just turn around and come back.”

That is not what you want to hear from your oncologist. Just having an oncologist is bad enough, but hearing him say your blood test needs to be redone is stomach churning.

Back we went. Zip, zap, zing. Before I could say “Hey, wait a minute,” I was in the emergency room, on a gurney and in a room hooked up to intravenous drips and who-knows-what-else. I had no idea what was going on. As far as I could tell, I was fine. My blood test results disagreed with my assessment and had triggered the alarm to my medical team. It was March 8th, three days before my birthday. The last place on earth I wanted to be was in hospital with tubes everywhere.

If any of you have watched Woody Allen movies, you may recall that he’s always convinced he has a brain tumor but no one ever takes him seriously. I am the antithesis of Woody. I think I’m fine. Everyone else is getting hysterical. It turned out the doctors really were convinced I had a brain tumor even though I had no symptoms of a brain tumor, other than being a nut case, but that was not news. Physically, I felt better than usual. Any symptom I had was part of a known problem already being treated or was being ignored because it’s untreatable.

Cutting a long story short, I had very low blood sodium levels. So low that the medical team was surprised I wasn’t dizzy and falling over. Typically, very low blood sodium is a signal of a tumor, often a very big brain tumor. We had skipped over benign possibilities and gone directly to the scariest possible scenario. At least they were taking me seriously. That’s good, right? Thus began the hunt for my big tumor. I was imaged, probed, poked, and biopsied from top to bottom. I particularly enjoyed the one where I had to drink a lot of barium because believe it or not, it tasted better than the food I’d been getting and was significantly more filling.

Before I escaped, they had run every test they could think of and a few others, too. Nothing. Normal. Clear and clean. The good part of this experience was I got to know what few cancer patients ever know. As far as current medical technology could tell, I had no sign of a tumor anywhere in my body. I hated being in the hospital, but in the end, it was worth it just for the reassurance.

I was very firm about being released before my birthday. I’ve been in one or another hospital for two birthdays and two wedding anniversaries. I didn’t care to spend another milestone in a hospital bed.

I’d have been more sanguine if  the food hadn’t been so awful. You would not believe the terrible things a hospital kitchen can do to an innocent chicken. Or worse, a piece of salmon.

I Digress

When I was having my initial surgery at the Faulkner Hospital in Boston, the food was terrible (of course), but it sounded great. These days, instead of showing up on a pre-arranged schedule with something inedible, you can select something inedible from a beautifully designed and professionally worded menu. In some hospitals, you can call for room service and they’ll feed you any time you want, as long as it’s before the kitchen closes, usually around 6 or 7 in the evening.

My friend Cherrie was staying with me at the hospital. She is the definition of a good friend, the one who cancels her life and sleeps in a hard recliner in your room while you try to come to grips with having been surgically redesigned. This is a digression to my digression.

The menu of the day featured “honey-baked salmon.” I love salmon. Actually, I like most fish, but I particularly like salmon. How bad could it be, right?

Our dinners arrived. I don’t know what she had ordered, but it wasn’t the salmon. I picked up my knife and fork with every intention of cutting off a piece of fish. The salmon fought back. I worked a little harder. Maybe I was weak from surgery and drugs. Finally, I managed to separate a piece of salmon and after some effort, spear it with my fork. I put it in my mouth. It continued to fight, battling each attempt by my incisors to incise. It seemed to grow in my mouth. The more I chewed, the bigger the piece grew. Finally, I swallowed it.

“Cherrie,” I said, ” I can’t eat this.”

“It can’t be that bad,” she said.

“Oh yes it can,” I assured her.

She took a piece, put it in her mouth, attempted some chewing, and spit it out. “What did they do to this? Is this edible? Is this fish? Is this food?” We started to laugh and could not stop.  The more we laughed, the funnier it was. The only problem was I was at the post-operative stage when laughing hurts. I was full of tubes, drains and stitches. Nonetheless, laughter felt good. Pain and all.

I could not answer her question. It looked like salmon. Right color and shape, but its appearance was a trick of the light, perhaps done with mirrors. It was really a building material, perhaps a salmon-shaped roofing tile.  We stared at it for a while, then shared Cherrie’s dinner. Conclusion: Do not order fish in a hospital. Bring your own food or consider fasting.

End of digression: We now return to our show, already in progress

Probably half a million dollars worth of tests later (don’t knock Medicare; I’d be dead without it), the answer was “idiopathic something or other.” Idiopathic is medical terminology for clueless. I had test results but no discernible cause. Fortunately, they did have a solution despite lacking a diagnosis. I would forever have to limit my intake of “regular” fluids. No plain water, fruit juice, or soda. I can have two cups of coffee (or something else “normal”), but everything else I drink has to be full of electrolytes, in other words, a sports drink. Me and Powerade Zero are now close buddies.

Thus as of last March, I didn’t have cancer and after I started drinking sports drinks, I stopped having foot and leg cramps that had plagued me most of my life. My family doctor thinks I probably always had low sodium levels that were borderline or marginally deficient. When I was tested in March, I had been drinking more than usual because I was chronically slightly dehydrated and was trying (ironic, eh?) to drink more. It was odd being told I to limit my fluid intake. Unless it’s a sports drink. I can have as much of that as I want.

I began drinking electrolytic sports drinks exclusively, other than my morning coffee. You would have to kill me before I would give up morning coffee. It must be accomplishing something because I am not thirsty all the time. Previously, the more I drank, the thirstier I got … so apparently there was something wrong, but no one knows what. Maybe it’s one of those genetic anomalies that seem to run in my family. Fortunately, the solution was simple and I really have learned to be okay with, if not actually like, Powerade Zero. Who’d have thunk it, eh?

Now, it’s October. I have another oncologist appointment coming up right before Thanksgiving. I do not expect to hear anything exciting. In fact, I very much would prefer to limit all medically related excitement for the remainder of my life.

Two years. Life changed a lot, physically and mentally. I hate being told I’m brave and am annoyed by people who think that it’s a blessing to survive something I didn’t think I should have in the first place. I am anti-pink think and still trying to reconcile this body with someone I recognize as me. I often feel as if I have been stuffed, sausage-like, into a casing humorously referred to as my body. I have a lot of negative feelings about my body. My fake breasts and I are not on good terms. They feel like alien invaders. They look fine, but they aren’t me.

I don’t have any wisdom to offer anyone except for one thing: Get the best surgeon for whatever kind of cancer you’ve got, someone with a lot of experience and a superb reputation. Do not go to the most convenient hospital unless it is also the best hospital. That initial surgery is the most important one you’ll ever have and if it isn’t done right, you can’t call for a replay.

I survived because I wanted to live. The alternative was death and I wasn’t ready for that. Surviving — and whatever it is that motivates you — is a very individual and subjective. What helped me were my husband, my best friend, a sense of humor, and reading a lot of escapist fiction. Now, I blog. I take pictures. Photography has been my hobby since I was given my first real camera and I have always been a writer. Blogging gives me freedom to write whatever I want and. It’s nice finally not having a boss telling me what I’m allowed to say.

I will forever feel that today is my real birthday.

Autumn is back. My year has come full circle. Trees are gold and red.

I’m alive. Good enough. Whatever the future holds, I’ll deal with it when it gets here.

Author: Marilyn Armstrong

Opinionated writer with hopes for a better future for all of us!

10 thoughts on “On Being A Survivor: Not Dead Yet”

  1. Dang. Just back from Alaska, where they enjoy fresh-caught wild salmon for breakfast, lunch, and dinner. Had I know you like salmon so much, I would have sent you some. BTW, I thought I *loathed* salmon till I tasted fresh-caught wild salmon in Alaska. Turns out I’d been trying to choke down that polymer shit they call salmon in the Lower 48.

    Glad you survived cancer – and that hospital salmon.

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    1. I think the salmon was the more dangerous of the two. I’m glad I survived too. What shall I do for act 2? Always wanted to go to Alaska. Doesn’t look likely real soon, though.

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  2. I would click the Like button but who Likes cancer? It still amazes me how you maintain your humor throughout all of your ordeals. Of course, some parts are naturally hilarious in they themselves bring on laughter no matter who tells the story, particularly those about hospital food. Yuck! Just had my first experience with the ‘menu’ thing when my husband was hospitalized this summer. He ordered what he called a ‘real’ breakfast. They brought in his tray right after the doctor said all papers are in order, you are out of here. Needlesstosay, he did not get a chance to evaluate this freshly ordered breakfast treat for in no way was he going to hang around just to see if the eggs were really eggs this time! About the salmon…you either love it or hate it. I don’t think I have ever found anyone in between trying to make up their mind. Me…it is absolutely the best! Would love to try some of that wild salmon in Alaska but that will probably remain a want since it does not fall into the needs category. So glad you are moving on into a new year alive and filled with vim and vinegar (OOPS! That is vigor, right?) LOL:>)

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    1. A lot terrible things make hilarious stories. No one laughs at happy events. They aren’t funny.

      Misfortune, errors, bad judgment, even calamities are the stuff of humor. I do not know why that is, but think about jokes, comedians, their routines. They are always about stuff that was probably not the least bit funny when it happened, but is a hoot later.

      And hospital food? I swear to you it was NOT salmon. It was not organic. It was … something.

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  3. This is both fascinating and scary: hospitals are scary places (The ghost of money long evaporated lurks over your bed!) and to the unknowing male, breasts are foreign beings. The last three lines of this are almost pure poetry. Golly, Miss Molly, you write good.

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    1. Well, just to liven up your otherwise dull week, men can and do get breast cancer too, and no, I hadn’t known that either.

      Life throws strange curve balls. Sometimes, you hit them. Sometimes, they hit you.

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