Years ago, someone I probably should not name chose a poor and emotionally-charged time to argue pointless semantics with me. I'm not going to go into specifics here, other than to say that it was work-related and I felt that my job was at risk because of some medical issues...not exactly legal, but that never stopped anyone before.
"You don't have cancer," the person told me.
Because I had an immediate, visceral reaction to the words (a mix of white-hot rage and nausea, to be totally honest), I didn't sit down and try to give that person the full benefit of the doubt as to what they meant. We were quite past the benefit-of-the-doubt stage, at least from my perspective, and in context, the words could have meant:
- That the person believed, from my general "normal" appearance, that I was exaggerating some sort of cancer story (it's unfortunate, but very likely that they felt this way),
- That the person believed I had once had cancer, but was now fine, and was "milking it" for attention and/or time off,
- That the person believed I did not have cancer, and had never had cancer.
When the counselor's investigation into all of this was finished, I was declared Quite Sane... having cried under severe duress... and the work situation got uglier. Rather than wallow in the ugliness, I left. And that's all I have to say about that.
In the replays, before my memory wistfully twists into swift retribution, I stop to try and remember the exact words, the inflection, anything that would give some hint as to what "You don't have cancer" might have meant. I'm almost sure I heard the person add, "And I don't think you ever had cancer", but my recollection is very foggy.
This person supervised eighty-odd people who did their share of schedule-worming and was probably exasperated dealing with yet another person's needs. Maybe the neurosurgeon appointment I scheduled a vacation day for was the straw that broke the camel's back, I don't know. Maybe the person needed me for something that day and was angry to realize that I was gone, even though it was prearranged. I'll never know. But this person was also a creature of absolutes, and I think it's very likely that they drew a very sharp distinction between HAVING cancer had having HAD cancer; no gray area. I think that's most likely.
When do you stop having cancer? When you go into remission? No one ever mentioned "remission" around me because my cancer never went away. It's still there in my spinal cord; it's been there for 32 years. It was inoperable, it was radiated until it stopped growing. It's a non-growing lump of cancer smack dab in the middle of my spinal cord that could start growing again at any time.
Do you stop having cancer when it stops affecting your daily life? I can't bend my neck to gather momentum to go up staircases...I have to hand-over-hand it up the railing like a mountain climber. Descending staircases is dangerous because my balance is bad. I actually have entire nightmares that consist of being in a narrow hallway with staircases ahead of and behind me wherever I go.
The cancer-lump causes a disjointedness between my brain and the rest of my body. It's like trying to drive a charter bus instead of a compact car; it's disorienting, you don't have a good feeling for what might be ahead of or behind you, and you can't really trust your senses. My feet don't feel temperature. My right leg periodically just stops working for no particular reason, and I don't know it's going to happen until I stand up suddenly and fall flat on my face.
Do you stop having cancer when your treatments are finished? I wrapped up my last radiation treatment 30 years ago. My last major spinal surgery was 20 years ago. But the radiation destroyed my teeth; I'm in the dentist's office all the time, having broken enamel-compromised teeth repaired. It cooked my muscles, which became stringy and tough and which give me hundreds of spasms, small and large, per day. It killed the bone tissue of my cervical vertebrae, which ensured that I would have toddler-sized vertebrae forever. The vertebrae themselves are a patchwork of dead, chalky bone and grafts from my hips to try and shore things up. They break periodically, landing me in the hospital for months at a time.
Do you stop having cancer when you're given a clean bill of health? I go to most of my specialists...neurosurgeons, neurologists, oncologists... every six months, because they're always waiting for the next fire to put out. No one knows what the radiation will cause or whether the original tumor will crank up production again. No one knows what to do if it does. I've never been given a clean bill of health because my cancer and I have been in a standoff for three decades.
So do I have cancer, or have I had cancer?
The way I look at it, both are true. I think that if you've got cancer in your past and it continues to cause you day-to-day problems you still have to deal with, you have cancer. And I don't mean that from a "you didn't win" standpoint, I mean it from an earned-respect standpoint. People shouldn't be able to brush off your needs because you aren't bald anymore, or you're not undergoing radiation anymore, or because your cancer might have been novel to them at first but worrying about you is getting old.
It's never a "you didn't win" thing. If you woke up this morning, you won for now. The more rounds you can go, the more times you can say, "That the best you've got?", the more experiences and memories you fit into your life, the more victories you stack up.
Beating cancer isn't a matter of philanthropic walks and t-shirts and ribbons. Beating cancer is an ongoing process of getting back on the scan table when you want to curl up in the fetal position and forget your cancer ever existed. Beating cancer is throwing the phone and yelling "FUCK!" when you hear bad news, then taking a deep breath and signing up for another round of chemo. Beating cancer is saying, "You know what...I had cancer, and this nonsense is still part of my life, but if I have my way I'll live long enough to die of something else."
Choose the verbiage that works for you. If it's a chapter that's over and putting it behind you feels right, say you had cancer. If it makes you feel better to think of it as an ongoing process and a daily trial, say you have cancer. I'll stick with both.