Lymphoma is the new good news

It’s CANCER. I can’t tell the whole story now. It will come out in bits, as I piece together the space junk (think Bullock and Clooney in Gravity) that was the last four weeks of my (really?) life. Spoiler – I have indolent cancer.  Lazy. The kind, my friend Bob says, lies around on the couch watching TV all day. No. Don’t get up. Just hold onto that remote. I’ll get you some chips.

It started with an attempted Pap test. The stick met a lump (that’s what the oncology radiologist called it 5 weeks later, just to confuse me, because others were calling it a cyst, and then it became a mass, a complex mass, which already felt ominous, so when she referred to the lump, I had to clarify that we were talking about the same thing, the one that turned up in the ultrasound, and not a new growth birthed by the old one. (I swear she was trying to freak me out.)

But five weeks ago it was simply a comfortingly-named cyst that was protruding into the wall of my vagina. An obstruction the shape of a hot dog. 4” by 1”.

Who the fuck refers to something hot dog-shaped as a lump? A lump is like a rock or a golf ball or a marble, not a pencil, or a baton, or a sausage.

My doc said it was nothing to worry about. Even the technician who did the ultrasound and isn’t supposed to say anything gave me the thumbs up. I’m a hard-core hypochondriac with a limited scope of concern. I have spent my adult life chasing an imaginary free-floating malignant tumour around my body. But I’m easily reassured. “Nothing to worry about” is good enough for me. You won’t catch me googling that shit.

Regardless of the status of my wiener, it was affecting my ability to pee swiftly and limiting access to whatever might need access. My doc sent a referral to the gynecologist who’d examined me (clearly not deeply enough) for some other minor female ailment, a few months earlier.  “She’ll feel bad she missed it, and deal with this quickly,” he said. That she did. She referred it lickity split to the Odette Cancer Centre at Sunnybrook.

Cancer centre? Who said anything about cancer?

Panicked, I called the gyno for an explanation about the transfer. She had no idea why anyone had told me not to be concerned. It sounded suspicious to her. Complex mass. Liquid and solid. Worrisome. No need to waste my time seeing her first. And anyway, she only does obstetrics and vulvas.

I had really liked her before that. But this woman just told me over the phone that there was a good chance I had cancer. “I don’t like to beat around the bush,” she said. (Then why are you a gyno? I wondered.) I thanked her. Got off the phone. Started sobbing. Then my back went out.

And that was the moment I stepped out of my life as I know it.

The odd thing is, I thought I'd done that when one of my very closest friends was diagnosed with metastatic endometrial cancer two months ago, and being there for her became my priority. Turns out I had no clue what stepping out of one’s life felt like. Her diagnosis was an instruction guide with directions. Mine was like being cut loose and left floating unguided, away from everything knowable, waiting to be hit by space junk.

A week later - don’t think you’ll never have to hear about that week. I’ll get to it. You have a temporary reprieve from the malignant wasteland that made up those seven days - I was back at Odette in another examination room with a surgeon, a surgical fellow and the oncology radiologist (aka lump lady).

After everyone got to put their fingers up my ass, (I challenge any of you non BDSM types to beat that stat - three in seven minutes) and lump lady accused me of lying to her about how much pain I was not feeling (I guess psychiatry is her other specialty), and they took a couple of bites of my hot dog, they left. The surgeon came back ten minutes later and told me there was a good chance it was cancer. 50/50, she said. Translation: we don’t know, but we suspect.

“We’ll have the biopsy results in three days. But we won’t tell you anything until you’ve had a CT, an MRI and a chest x-ray and we’ve gathered all the info.”

“But can’t you just let us know…”

“No.”

She left me flattened in the examination room. The nurse, the one who bears the burden of warmth and empathy, was left to deal with the mess of me.

"I think I’m going to faint,” I said, and lay down on the floor. If I licked it I was certain it would be salty from all the hard news that has come before mine. She doesn’t want me on the floor.

Breaking what they have insisted is protocol, I was called two days later and told to come back the following Wednesday. Before I’d had an MRI. Maybe it’s good news and they want to let me know it’s benign so I don’t worry. I gathered up the proof I had that this was the case. I ignored the evidence I had that it wasn’t. Theirs is a cancer world. Mine is not.

They don’t call people in early for good news. Early is bad in cancerland. They could have been in touch when they found out but they are indifferent to my five days of hyperventilation, end-of-life planning, faking it for my kids. I am one of thousands.

She tells me it’s Lymphoma, but she has no idea what kind. She can’t comment on treatment options, prognosis, whether I’m going to die in six months. Nothing.

“Sorry, It’s not my specialty, I haven’t seen lymphoma since medical school.”  I’m shipped off to the lymphoma people who call with an appointment for nine days later.

My mother  - bless her normally reserved heart - draws on some inner maternal pitbull, and begs me an appointment in two days. I know you don’t die from anxiety, at least not in a week, but I can’t imagine how I would have made it through. I went out to trick or treat with my 10 year old seeking reliable distraction. All I saw were happy healthy parents with years of trick or treating ahead.

$100 in parking fees later I’m back at Odette waiting 2 hrs. I’m in my Zombie outfit a day late for Halloween.

“Marginal Zone Lymphoma. Indolent. Excellent prognosis.” The intern is young and has beautiful nursing qualities.

I drop back into my body from wherever I had gone for weeks. I joke about my hot dog. I cry.

Indolent Lymphoma is the new good news. There will be treatment. I have no idea where in my body it has traveled. I brace myself for the next round of space junk.

But I got my life back. Some variation of it. It will be different. If I do it right, it will be better.

Postscript: There are four million more things I’ll say in time. Right now there is relief, fear and gratitude. I am profoundly blessed to be surrounded by love, by family and friends that leaned in, gathered around me, distracted me, held me, fed me and my kids, cried with me, wrote me beautiful words, avoided platitudes, and made me laugh.

Ah relativity. Indolent Lymphoma now feels like a gift. How crazy is that?

 

 

 

 

 

 

 

Comments

Thank you for sharing, Aviva. This piece is what writing's all about.

You describe this so vividly and intensely… thank you for sharing. Holding you in my thoughts as you navigate this space.

You have filled this much time in your existence with greatness and intention well being. I am so well aware of the tensions between tests and outcomes and the hamster wheel of helplessness one can face. I am so sincerely pleased that you have found some peace in such a complex experience. You are a fighter. And moreover, a champion of finding the poetry in the moment. I am hopeful that all will be well. May you find a moment of loving peace in each day. My sentiments are so geared towards your wellness. With sincere regard and fondness, I bid you the gift of finding the gift in your loving friends as community. You have begun to heal your angst and soon your body will follow.
Lovingly,
M

Only you can make the terrors of cancer funny. xo

Hi Aviva;
Sarah here (Brad's sister, Kenny's friend, Naomi and Ingrid's friend, etc.). Ingrid sent this to me and I am so glad she did. I didn't know you were a "blogger" so now I am going to "follow" you. How beautifully and wonderfully written. And funny too! Thank you for sharing and I am so glad your cancer is lazy. You are in my thoughts. xo

Your best writing ever. Maybe that's a crappy thing to say given gthe motivation. But it is. I love and respect you, as always.

Veev - one of the best you've written so far. I'm still watching, reading and smiling - sorry its from so very far away. xo

Thank you for writing this. I have no idea how you found your sense of humour through this but I'm glad you did. Lymphoma has a good success rate and I wish you all the best in your treatments.

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