5 Years, Still Alive

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Five years and still alive (5 anni e ancora sono viva)May 4 2018, Bologna

 Recap

May 9, 2018

After a positive test for breast cancer on March 18, 2013, the diagnosis post-surgery 10 days later was Stage 3 breast cancer.

And…I’m remarkably well! Considering.

Five years ago, I was not phased by the diagnosis. I was young(ish), 47, and otherwise healthy. I was confident that I could get through this and get on with my life.

Two months later an incidental finding led to the discovery of a spinal cord tumour measuring 2.4cm at C1, just beneath my skull and compressing the shit out of my spinal cord.

Given the fact that I was having chemotherapy following my lumpectomy, the spinal and breast cancer teams decided to continue with the chemo until I had symptoms of neuropathy.

Within two weeks, my limbs, and particularly my hands and feet, were numb.

The nurse practitioner did not respond to my calls, and I could not reach my neurosurgeon. At the advice of my family doctor, I went to Toronto Western Emergency, where they booked me for neurosurgery 10 days later.

A year after the surgery, another disappointing diagnosis: the nerves in my limbs would not regenerate. The spinal cord damage was permanent.

That item wasn’t even on the menu! And worse, the deterioration is progressive.

And I had to adjust. Recalibrate. But I was angered by all of the surprises. My neurologist informed me that there was no recovery, no rehabilitation program. One of the hospitals I used to work in is entirely dedicated to rehab, yet I did not qualify because of my neuropathy.

However, three years after the surgery, a pediatric neurosurgeon friend informed me that 20% of patients are paralyzed from this surgery, and 20% of patients do not survive. I was very, very lucky.

Struggling with the fear of shortened life expectancy, I focused on my mental health, exercise and, especially, my relationships.

My grandmother, who we called Rondo, told me she would sit up in her bed in the morning and put her feet on the floor and said, “Thank you, God, for another day.”

That’s what I feel like. I’m so thankful to still be here. And yet, each day brings me closer to my fatality. Yes, I’ve made it to the 5-year mark, but it doesn’t mean I’m in the clear. I’m waiting for the next shoe to drop. The R word.

Recurrence.

Since I’ve been diagnosed, I’ve lost 6 friends to cancer.

I’ve written about this previously: The National Health Service in the UK has a model of calculating breast cancer survivorship based on a patient’s pathology. It is called Predict and the current version is 2.0.

Predict Tool Results

Sloan Kettering has a similar model, but the limit of positive lymph nodes is 7. When I enter my lymph-node count, the tool won’t create a result. There’s just a circle in the centre of the screen, spinning endlessly.

I had 13 positive lymph nodes, plus carcinoma in the tissue outside of the lymph nodes and a “2.0 mm piece of unidentified fibro-adipose tissue” that also tested positive for cancer.

I would have preferred an unidentified flying object. Or an E.T., crop circles, even.

When I saw my breast surgeon with my pathology report in hand, I asked him, “What the hell is this?”

David tried to encourage me: “I’ve known patients who lived 10 years with the same pathology!”

I was 48.

According to the Predict tool, only 7.7 of women are still alive five years from diagnosis, with similar pathology.

Apparently, the chemotherapy had no effect. I was chemoresistant, a term I had never heard, and a possibility I was never aware of. A 2017 article printed in Stem Cells Report indicated that there may be some positive effects after the patient has a break from the chemo. They are still experimenting with animals.

All that poison that was pumped into my veins for nothing! And the psychological trauma, the physical pain of having long needle being pushed, slowly, up a vein in my lower arm. The first three sessions of my chemotherapy were administered by hand: a very patient nurse, pushing a drop of chemo at intervals, making sure the chemo did not spill out of the vein during the procedure.

I thought I had prepared by eating a pot cookie and sipping a mimosa.

My daughter had the solution for Chemotherapy # 2. In addition to eating more pot cookies and more mimosa, just before insertion, Emily popped my earbuds in and played “Get It On/Bang A Gong” by T. Rex, at full volume. Now that distracted me and got my endorphins flowing.

Chemoresistance is rare and, unfortunately, there was no way of knowing, prior to the treatment, how my body would respond.

So, what did that mean? If the chemotherapy had no effect, then obviously carcinoma was still free to float around in my system.

With an attempt at looking on the bright side, my surgeon said, “I’ve seen patients with your histology who lived 10 years!” As though it was encouraging.

And according to the NHS Predict v. 2.0, no one survives 10 years.

My radiation oncologist, the late, great Pamela Catton, also the former head of the Radiation Program at University Health Network, was the only physician who was straight with me. I suggested to her that she probably had only a handful of patients with my pathology.

“Less than that,” she replied.

There is a support group for breast cancer patients who volunteer to help those recently diagnosed, and you can be matched with a volunteer who has the same type of breast cancer.

“Can you at least pair me up with someone with the volunteer support group?” I asked Pamela.

“No,” Pamela responded. “You’re going to have to cast a wider net. Check out breastcancer.org, in the U.S. They have forums for all types and stages of breast cancer.”

“So, I’m an outlier.” And she nodded.

I appreciated her honesty so much more than the bullshit spewed by doctors trying to make their patients feel better.

After I recovered from the lymph node surgery, it was time for six weeks of daily radiation to my left breast and underarm.

My breast surgeon wanted to remove more tissue from my breast, but I refused. “You had two guide wires inserted prior to the surgery, and you missed the 2mm margin on two sides. I’ll take my chances.”

Pamela Catton came to the rescue: she proposed boost radiation directly to the tumour bed for the last week of radiation. And that’s what we did.

I don’t know how many women with a breast cancer diagnosis and going through radiation were given the same option.

Pam died a year later from cancer

I happened to be in Bologna for a meeting when my friend and colleague sent the obituary from Toronto. I stopped in the piazza, with tears flowing as I tried to read the obituary, and not knowing where to hide myself. I walked into the nearest bar and ordered a glass of prosecco. I sat in the back, alone, drinking my prosecco and trying to get a grip. Pamela knew she was sick and kept working until she couldn’t. She died just before Christmas in 2014.

Less than two weeks later, on January 4, 2015, I received several phone calls about the death of Stuart Scott, a former sportscaster and anchor on the sports channel ESPN. He was honoured by the ESPN from six months prior to his death. His speech continues to resonate with me, particularly the following words:

When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live.

Amen.

Cord or Cancer?

I’ve made it. I was increasingly confident that I would be among those still alive the 8%. As soon as I got to four years, I knew I could one more for sure.

There have been major changes over the course of five years, as my limitations progressed.

I moved out of my house in 2015 because I couldn’t manage the stairs. It was the first of a series of downsizing projects. Only main floor flats for me from now on.

And last summer, sadly, my liver stopped processing alcohol. If I drink more than one glass, I am prone to vomiting. No one warned me. It happened to my friend, who also has advanced stage breast cancer, before it hit me. How unfair! The gestalt of sipping wine with friends and/or lovers, celebrating milestones, sharing a beautiful meal with people you love. Without wine???

Those days are gone. I am often the only sober guest at every party.

Recently I started on medication to stop the very regular regurgitation. I no longer need to deal with recently digested vomit surfing up in my throat, even if it means I’m on another pharmaceutical.

Welcome to cancer. Or spinal cord injury. Or both. (Although I’m ready to blame the hair loss on cancer.)

Before I was diagnosed, I had seen films with characters that have cancer, and scenes of these characters shitting themselves because they have control of their body function.

At the risk of losing some or all of my lovers, fluids leak from my body, sometimes without knowing. I always carry an extra thong in my purse, in case I leak. I often have to change my undies once or twice a day.

How many other women travel with diaper cream? Sometimes my ass is so raw I have to shower instead of using toilet paper.

And at the risk of turning off my lovers, on more than one occasion, I have found myself standing in a pool of my own feces. My entire GI track can decide to let loose without warning.

In Stuart Scott’s 2014 acceptance speech, he quoted the founder of the Jimmy V Foundation: “Don’t Give Up…Don’t Ever Give Up.”

I will not give up…until I have to. (Translation: it’s time for adult diapers.) 

 

Lesions du jour

Bruised hip

I have been photographing my cuts, bruises, hematomas and contusions for some time, and the bruises and abrasions became more frequent. Having neuropathy in my limbs means that I can injure myself without knowing it. I feel nothing. But the evidence appears, always to my surprise.

I had sent some images to Emily, entitled “A Compendium of Contusions.”

She responded immediately by text: “What the fuck is going on!”

“I’ve got all these bruises, especially on my legs, and I don’t know where they came from.”

My hemoglobin levels are fine.

I asked my friend Katie to came to my apartment.

Before the Compendium of Contusions, I used to disclose to new lovers that I’d had breast surgery that left me with one-and-three-quarters of boob…and a spinal cord injury. I tried to keep it light, but of course, it’s not the easiest thing to someone to hear.

When Katie arrived, I lifted my skirt.

“You don’t have to say anything to your new dates about your breast or your spinal cord—you have to tell them that you are not harming yourself, and that no one is harming you.”

Best. Advice. Ever.

“Actually,” Katie added, “it looks as like you’re using heroin.”

I assured her I wasn’t.

And so many times over the last five years, I’ve had to disclose to new lovers, without turning them off entirely. I’ve had to explain, prepare, dance around the story of my lack of balance, the hardware in my neck, the decreased sensation in my limbs, and worst of all, a cognitive deficit, the bane of my existence.

At least my mouth and vagina still function.

National Day of Liberation 2018 with Katie MosherKatie with poofed hairstyle

Having too much fun with Lady Katie Mosher in Bologna

 

And yet, life is good

A dear friend of mine and my all-time favourite dude came to Bologna two weeks ago and took me to the sea. And more delicious memories were indelibly ingrained on my soul. Replaying the moments (or hours) of  intense and genuine passion is how I am able to fall sleep at night. How in the world can I be so lucky?

In addition, over the last five years, my breasts have gotten larger. Don’t ask me to explain. My weight fluctuates like everyone, but I seem to be busting out of my bras each year. And it’s expensive!

Several friends in Toronto have asked if I’d had implants. I haven’t. When I arrived in Bologna last month, more friends have inquired. For example, “What’s going on with your tits? They get bigger each time I see you.”

My grandmother, Rondo, used to tell me I had “nothing but a couple of fried eggs.”

As far as I’m concerned, it’s a fucking miracle.

 

Katie Mosher: “It’s all about love”

My life has a singular purpose: All I want to do is spend time with people I love, which I have been able to do, in spite of my limitations, my diagnoses, my perma-chemo-brain, my falls.

A shout out to my family and friends who have supported me in so many ways. Not everyone is photographed, but you know who you are.

And yet, and most importantly, I am graced with my incredible offspring, Emily and Solomon, my heroes, my saviors and my superstars. They have been rising to the many challenges for five long years, and there will be more challenges to come.

Family Portrait 2014

Family portrait 2014 at Bonnaroo Music Festival, Manchester Tennessee

After these past five years, I’m certain that I’m still here because of them. Thank you, Emily & Solomon.

With love, kisses and gratitude to my family and my friends, who are my family, too. xox

 

 

3 thoughts on “5 Years, Still Alive

  1. Beth Kasik

    ELIZABETH thank you for sharing your story. I had bilateral lumpectomy done back in Jan 2013. Dr Pamela Catton was my radiation doctor as well and the short period that I met her, she was awe inspiring. I did not realize she passed away in 2014. Your story of courage made me cry. From one Elizabeth to another.

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