Here’s what really happens
It’s not like on TV where a 50ish year old man, graying ever so slightly at the temples sits behind a big oak desk in an office crowded with framed degrees from Ivy League medical schools. You hold the hand of your spouse and the doctor says in a low tone, “I’m afraid Mrs. Williamson, you have cancer.”
You sob quietly as your spouse puts his arm around your shoulders…
It’s not like that at all. Here’s what really happens…
You have a pain. It’s an ordinary pain. It’s somewhere between your stomach and your back. You’ve gone to your GP. You’ve had tests. They show nothing.
You aren’t always in pain. But, sometimes after too much wine with the girls, sometimes after dinner at the local kabob house. It goes away with Advil and Tums.
You’ve taken to carrying Tums in your purse.
One morning the pain doesn’t go away. You are very sick. Your eldest takes you to the emergency room.
They poke and prod. The nurse asks lots of questions, “ever had high blood pressure or cholesterol, diabetes or heart disease, glaucoma, asthma, broken bones, lupus, sciatica, arthritis, bunions…?” You don’t even catch cold. No, no and no.
“Gimme the morphine, doctor”! You feel much, much better, have stopped vomiting.
“Maybe it’s a virus, the flu, here are your discharge papers”…..but wait, the doctor comes back…. he’s just an intern, so young… but… ”while you’re here, let’s take a scan” he says….
He returns, “Mrs. Williamson, we see something…”
The gastroenterologist says, ”we’re hopeful”. The oncologist says, ”we need another biopsy.” The surgeon says “I’m the best in the country”!
They all call it a “tumor” that has to come out. They say “we’ll see when we get inside…. sign this paper that says we can remove whatever we want…”
They never say cancer.
Now you have to tell people. The kids first. So you call a family meeting. The kids are skeptical because family meetings are only called to discuss summer vacation. It is November.
You matter of factly say “I have a tumor and in a few weeks I will be having surgery to remove it.” You’ve used an English accent for no apparent reason.
You are shocked when the girl begins to cry hysterically. The oldest loses all color in his face and begins asking questions about doctors and hospitals and treatments. The youngest loudly proclaims he “knew something was going on and he is always the last to know”!! and then begins to hyperventilate.
The spouse turns to you and says “see, now you’ve upset everyone.”
The Internet is good for a lot of things, finding ways to cure your cancer is not one of them. You’re on the internet every night.
You learn everything you can, you find obscure medical journals, you make copious notes. You look at statistics. They talk about “tumor progression” and survival, in months not years.
The statistics are dire. You stop looking at statistics. You’ve stopped crying months ago. You begin to get very, very angry.
Every morning as the hot water beats down on your head, you pound your fists as hard as you can into the shower tile.
Like Rocky…hitting, hitting, hitting the beautiful white marble tile. Until your knuckles bruise.
All the cancer blogs say a support group is “helpful on your cancer journey” especially if you are having trouble “following the path toward survivorship”.
Scouring the chat rooms and blogs no one mentions the mind numbing homicidal blind rage you are experiencing every day.
It is very unlikely that you would receive cancer treatment in the New Jersey prison system so it would be expedient to handle the problem.
Support group #1 Pancreatic Cancer group meets Tuesday mornings at the ABC Cancer Center. Call Patty to register!
I get there early and find Patty. She smiles tightly. Slowly the other participants arrive.
There are three men with pancreatic cancer; they each have a family member; wives, sisters, daughters.
One woman whose husband was recently diagnosed arrives alone looking like she is in the wrong place. Her future staring at her from around a conference table.
One man with the complexion of a yield sign asks me what kind of cancer I have, I tell him and he says that’s the “good” pancreatic cancer.
I am on my way to work so I am Ann Taylor tight, down to the black sling backs. I have a head full of hair, albeit white (a side effect from a current treatment). I look good.
They hate me.
Support Group #2 Cancer Support Group meets Sunday afternoons at Random Cancer Center. Call Wendy to register!
They are all breast cancer survivors. They are happy and hopeful and full of rainbows and pink ribbons.
I am angry and sad and trying hard to smile.
I feel an overwhelming desire to snatch head wraps off of bald heads. I mumble something about the ladies room and leave.
Art Therapy for Cancer Survivors. Meets Wednesday mornings at 10:00. Call Marcy to register!
I arrive in my Halloween costume. I am wondering why no one else has. It is Halloween. Even with cancer it’s still Halloween. I am a pirate. I look fabulous.
“Today”, the counselor says “we are going to make Christmas ornaments.” She demonstrates how to pour paint inside the plastic ball and swirl the colors together.
She uses red and green. The paint swirls in waves, it looks beautiful. Then she covers the ball in gold sparkles.
I pour the paint and swirl it around. The red and the green turn brown. I ask for another. It happens again. I try it 4 more times.
I now have 5 brown Christmas balls covered with gold sparkles. When she leaves to get more supplies I take her balls and flee.
Hey, I am a pirate….!
My oncologist says “my attitude is hindering my treatment” and I should try a personal cancer counselor.
Personal Cancer Therapist. Call Missy for an appointment!
She greets me and shakes my hand. It is a small office with a tiny sofa covered in a rose print. It’s uncomfortable.
She takes the office chair and asks about my cancer. I notice that there are tissue boxes everywhere. I don’t feel in the least like crying.
I already feel like I’m disappointing Missy. She listens to my story. I tell her that I think this whole episode is a terrible mistake and I shouldn’t have cancer and I am very angry about it. She asks me “what should it feel like to have cancer”? I don’t understand the question.
She asks me, “how should I feel because I have cancer?” She seems to want an answer but I still don’t understand the question.
If I knew what it feels like to know I have cancer than I would feel that feeling. But I don’t know. I am getting dizzy.
After an interminable 30 minutes she asks if I want to make another appointment. I tell her “I believe I will continue my journey on my own.”
I’m getting good at this ridiculousness.
I continue my search…
Group #3- Big Apple Nets- Support and Information for the New York City area Carcinoid and Neuroendocrine Cancer Community
I get there early. In case this turns out to be a bust I’ve checked out some shops on Lexington and picked up a pair of darling kidskin flats. I ring the bell trying to remember if I’d given John the address. I am going to a strange apartment in New York City. My Aunt Lizzie would say this is just the situation where you’re likely to be kidnapped and sent on a boat to Singapore!
The door is open. The room is sunny. There are smiles and laughter. “Welcome”!
This is where this new adventure has led me. These are “my people”. We know the lingo, “carcinoid…neuroendocrine tumor”. We talk about research and treatments and doctors and hospitals. We talk about pain and healing and insurance and drugs and families and jobs and travel. We talk about everything. This is a good place. This is a safe place. This is what I needed. This is what you need.