On surgery day, my sister-in-law, Patty, and my children, Emily (23) and Solomon (16) walked with me from our house in Little Italy to Toronto Western Hospital.  Patty gave my children and me the opportunity to be alone together before they wheeled me to the operating room. The surgery was expected to take 4-1/2 to 5 hours.

Emily’s father, Stephen Parkinson, also a close friend, was with Patty and my children in the waiting room during the surgery.

Emily told me that after five hours had passed, and no one had come out to update them, everyone started getting anxious.

She was pacing the waiting room like a caged zoo animal when, six and a half hours after I was taken to the OR, Michael Fehlings appeared. Emily didn’t recognize him in scrubs, but when he smiled at her and nodded, she burst into tears.

Michael told my kids, Patty and Stephen to get some dinner. I would be in recovery for quite a while.

I distinctly remember waking up in ICU, feeling groggy as I opened my eyes. As consciousness spread over me and I realized where I was, I immediately wiggled my fingers and toes.  Success! I survived.

The nurse in charge of me asked me some questions: my name, if I knew where I was. I asked what painkillers they were feeding me, since I’m sensitive to opiates. Fentanyl. On a pump that I controlled.  Fucking brilliant. No morphine.

Later that evening, Emily, Solomon and Patty were allowed in. We were all crying with relief. They called Jane and put me on the phone, and I cried with her, too. I was so stoned, I was speaking in my mother tongue, that is, with a Long Island accent.

I was tethered to a network of tubes and wires attached to beeping machines. Some tubes and wires passed through the arms of my gown, its strings untied and untidy, or across my torso. I was covered in blankets with no clear borders.

I wanted the gown off. The good-looking male nurse discouraged this, yet I pushed back, with a heavy accent, “Is it a crime to be naked under the blankets?” The gown came off, discreetly.

My family stayed with me until I surrendered to the fentanyl.

The next morning, my brother, Carl, arrived and with the rest of the family, he followed me as I was transferred from ICU to a private room in the neurosurgery ward.

When my father, Carl Sr., arrived the following morning, I was in rough shape. Clearly stunned, he compensated by making a joke about my hair (or lack thereof). I can only imagine how difficult it was for him to see me in this state.

That day, the food started to arrive.

Under Harriet Eisenkraft’s direction, Emily was informed when to expect a food drop-off, first at the hospital, and when I was discharged a week later, at home.  No half-hearted noodle or rice casseroles, but sumptuous, creative and delicious meals.

My friends didn’t just cook for me. They cooked for my children and for my visiting family as well.

My father asked where all the food came from. “My congregation!” I was proud to tell him. Rick and Liora Salter made a huge meal with their own rotisserie chicken.  Ellie Goldenberg, Eden Nemari, and Harriet Eisenkraft and Gary Klein brought us wholesome and soul-feeding meals to hospital and home. My rabbi, Aviva Goldberg, and her partner, Dinah Gold, and our chazzan, Daniela Gesundheit, brought a load of yummy organic foods from Carrot Common. Daniela also came with her husband, Dan Goldman (together, they are Snowblink), bearing gifts of food, including handmade, low-GI chocolate.

And there were many others outside the congregation who also contributed following the surgery.  Most of my friends are foodies.  Krys Verral, for example, would come by on her bicycle with an insulated package containing a number of her luscious vegetarian salads.  Margo Kennedy and Karen Turner fed me many times, and surprised me with a gorgeous bouquet of fruit! And so many more people, including my regular dinner hosts, James Summers and Harold Van Johnson, and Steve Roy. (See Dedication)

We didn’t have to cook for a month.

The recovery, nevertheless, was brutal. I ended up reacting to the Fentanyl. Day one after the surgery, any change of position caused blinding headaches, a pain that exponentially exceeded that of natural childbirth, which I have not forgotten.

Morphine and other opiates were not options for me. Even with anti-nausea medicine, I get terribly sick.

When a physician from the Pain Team came into my room on the third evening, she started asking me, “On a scale of one to ten…” and I interrupted her, with tears streaming down my face: “Fucking 13!”

I told her that the pain was worse than childbirth without anesthesia. There had to be something they could do to help me. It’s not acceptable that I’m in so much pain.

On the fourth day after surgery, the problem was identified, first by my brother, then the Team.

The low pressure headaches were caused by a cerebral spinal fluid leak.

It’s hard to sew up the meninges, the covering of the spinal cord, so that it is water-tight.  My drain was collecting the pink cerebral spinal fluid so quickly it had to be emptied four times a day.  During those few days, with that pain, death would have been a welcome relief.

After the diagnosis, I received a medication that took the edge off the headache so that I could stop wishing I were dead.  The following day, my catheter was removed.

Every night, my brother, an infectious disease specialist, stayed late into the night with me, until I fell asleep.

He never told the staff or the medical team that he was a physician, but he watched them, and he asked questions, in the most neutral and inoffensive way possible.  It was a highly effective approach, because meds as well as other practices were adjusted as a result.

For several days in the hospital room, my family broke bread together and watched countless episodes of Arrested Development on my father’s iPad, propped up on the meal tray.

Once the catheter was out, a nurse would help me when I needed to use the bathroom.  I was dizzy and disoriented and unable to stand on my own.  Two days after the catheter was removed, an occupational therapist came in with a walker and helped me to get moving.

Mobilizing was difficult. It was as though these legs under me were not my own. Whose body is this? I wondered.

Michael and his team came to see me the following day.  I was to walk with the walker for 10-15 minutes, three times a day.  A tall order, I thought.  But with the help of my family, I overcompensated. I walked 10-15 minutes four or five times a day.

During one round-the-unit tour with my daughter, I had an episode of supraventricular tachycardia—a nuisance more than a health risk.  A wave a nausea comes over me and I will actually articulate it (“I need to lie down now”) just before my heartbeat jumps from 60 to 150. The nausea lasts for 15-20 minutes, as my heartbeat gradually drops back down to normal.

Normally I just lie down wherever I am and raise my legs. This time I had to make it back to my room, with a walker, as my heartbeat spiked.

After just a few days, a neurosurgery fellow saw me walking steadily and said, “Look at you! You’re going home tomorrow!”  Yahoo!

The horrible drain was removed.

The next morning, Michael Fehlings and his team again came to see me.  I was told to drink carbonated beverages, which helps produce cerebral spinal fluid. I was not to lift anything.

Then Michael said, “Let’s go for a walk.” I gingerly got down from the bed and slipped into my robe and Mephisto sandals. I reached for my walker, parked next to the bed.

“No, no walker this time. Take my arm.”  And we went for a slow walk around the unit. Michael is tall, a debonair type. It was both odd and fun to walk with my hand on his arm, as though on a date, and trusting him to keep me from falling.

“I know the therapist told you to rent a walker,” he said, “but don’t.  Just get a cane.  Keep up with the walking, three times a day, always with someone, until you feel comfortable on your own.”

I called the kids with the good news. Released!

A nurse helped me bathe and change into a sexy maxi dress, the one I wore to the hospital on Surgery Day.

My children, Emily and Solomon, arrived at the hospital with a tray of lattes.  They packed my belongings. We all thanked the nursing team on the neurosurgery unit, and I gave Michael a big hug goodbye on my way out. This man saved my life. I am so grateful.

We stopped at the two pharmacies on the way home for prescriptions, a cane and a bath chair.

Over the next three weeks, I took up residence on the living room sofa.  Still experiencing the low pressure headaches, the pain mitigated somewhat by medication, I felt as though only a part of me had survived the surgery.

I had trouble thinking, probably due to the suite of medications I was on.  I was able to bathe and dress myself, but other simple acts of daily functioning were beyond me.

For example, I could not lean forward or bend over. Such movements still caused a blinding headache and tears.  But I adapted. I learned to pick up things from the floor with my toes. I could reach a lower shelf in the fridge by doing a deep plié in second position.  The ballet lessons of my youth came in handy.

My memory was gone. I could not remember a conversation from earlier in the day.  I kept losing my medication, until Emily firmly insisted that the meds never leave the newly-designated “medication drawer” in the kitchen.

I was not allowed to walk on my own, although my house is so small that I can always use my cane and have my other hand on a wall or banister.   My children and visiting friends would accompany me on walks outside several times a day. I used my cane and the arm of my companion to balance.  Each day, my walks became increasingly longer, reaching 30-45 minutes, three or four times a day.

I had a long and rather dramatic incision down the back of my head, from just below my crown, down the entire length of my neck and ended between my shoulder blades.

The bandages came off a week after returning home, and the skin beneath the incision was raw and red. No longer could I hide my baldness with the beanies. The incision had to be exposed to air at that point, shocking people behind me and frightening small children.

At least I didn’t have to mention cancer when people asked me what had happened. “Spinal cord surgery” was all I said. End of conversation.

Spinal cord surgery sounds, and is, rather dramatic.

Waiting before the procedure, with Emily and Sol.

Now they have to leave. I am still here now.

Is it harder to have to utter that phrase, or harder for the listener to hear?

Five years and still alive (5 anni e ancora sono viva)

 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.

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

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.

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 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

 

 

Caring friends in my circle cautiously ask me how I am. I do appreciate their concern. The fact that I am in their thoughts is comforting to me.

When they ask, almost everyone says, “You look great!” to which I reply, “Thank you, that’s really all I care about.”

(It’s true. My vanity prevails. Yes, I’m that shallow. Since the diagnoses, and even through the Bald Period, my deepest fear wasn’t dying of cancer–it was looking like a cancer patient.)

Then I tell my friends the most important things about my current condition:

First, I am grateful for all of the love in my life–my friends and family and communities that have sustained me since my first primary diagnosis.

Second, I am grateful for all of my abilities.

And that’s where I usually leave it, because the full story is just depressing.

My family and closest friends are well aware my current challenges.

I’ve been in remission since June 22, 2014: cancer-free, for now. I like being in remission. It’s a nice place to be after so much drama.

While I am doing everything I possibly can to stay healthy, the truth is, it’s a crap shoot. Advanced stage cancer has a nasty habit of recurring.

Fortunately, I am comfortable living with uncertainty. In fact, I’m kicking cancer’s ass by living well. (And everyone can learn to live more fully by watching Stuart Scott’s stunning speech  accepting the Jimmy V Award for Perseverance in July 2014. Every word is true. Sadly, he died less than six months later.)

Almost two years since my dual diagnoses of advanced stage breast cancer (March 2013) and spinal cord compression (May 2013), I expected to have recovered or nearly recovered.

Reality: the side effects of chemotherapy and spinal cord compression persist and interfere with my ability to function. The gap between where I expected to be and where I am plagues my consciousness.

The subject is often the focus of my sessions with the phenomenal psychotherapist, Barbara Brown.

My phenomenal family doctor, Debbie Honickman, recently told me I need to work on “the acceptance piece.”

When I relayed my discussion with Debbie to my close friend (and Emily’s father), Stephen Parkinson, he defined acceptance: “It means not wishing things were different, or better.”

I’m still trying to fit this definition into my worldview. It’s not easy.

Here’s the list of issues, in no particular order:

My brain:

Some chemotherapy drugs cause “chemo brain” or “chemo fog,” a temporary cognitive deficit that can last up to two years. It has been postured that I may have a nasty case of it because emergency spinal cord surgery interrupted my chemotherapy treatment.  Before healing completely (basically, once I could walk without assistance), I returned to chemo. My neurosurgeon, Michael Fehlings, told me that chemotherapy is a disaster for the nervous system. “Where do you think chemo brain comes from?”

When tested in my youth, I had an IQ of 141. Today, it hovers around room temperature (Fahrenheit). At least it feels that way.

Having no short-term memory is terrifying. I don’t remember a conversation I had yesterday, what I did yesterday, or even if I have eaten. I determine whether I’ve had breakfast by looking for evidence in the dishwasher. (My disconnect with my stomach will be explained later.)  Sometimes during a conversation, I lose the subject. I am awash with shame and humiliation.

Aside from memory, I struggle with organization, cause-and-effect relationships and even simple problem-solving. For example, just over a month ago, when planning the annual Chanukah Party for my staff, I was quoted three latkes for five dollars. I spent twenty minutes with a calculator, then my fingers, trying to figure out how much 50 latkes would cost. I was sweating. I could feel my blood pressure climbing. “Dear god,” I thought, “this is simple arithmetic.” I gave up.

The chemo fog may be exacerbated by chemo-induced menopause. However, my condition goes far beyond difficulty retrieving nouns.

Coping strategies for my brain

I write everything down. If I don’t, it’s gone from my head. I live by lists. I have lists of lists, in fact, including lists of rules that allow me to function and to keep me from falling apart.

Here’s an example:

If I find myself without paper, I write on my hand or my arm. I find myself re-reading the previous chapter of a novel from where I left off, because I don’t remember what I’ve read.

I am Guy Pearce in the film Momento. There are Post-It notes everywhere. I should have a Polaroid camera.

I am handfuls of supplements, daily self-massage (myofascial, lymphedema, feet), trips to the gym, foot exercises, weekly Vitamin C infusions, mistletoe injections (three times a week) and endless rules: the keys always go on the hook, the credit card always goes back in the wallet, eye glasses always in my purse, meds always always go in the Med Cupboard, appointments/dates always go in my iPhone calendar. And now, I have a paper calendar as a back-up.

The list of rules is endless. In spite of this, I occasionally stand up friends inadvertently, or I present at the wrong clinic for an appointment, or show up on the wrong day. Welcome to my life.

Anxiety of cognitive issues definitely exacerbates the fog. Following advice from Debbie and Barbara, and also my Traditional Chinese Medicine practitioner, Angela Warburton, I acknowledge my limitations and remind myself it’s temporary. I try not to chastise myself.

My feet

When the joints in my feet became painful about a year ago, my medical oncologist, Eitan Amir, suggested it was from the Tamoxifen, something of a miracle drug that blocks estrogen receptors and helps prevent or delay breast cancer recurrence. One of the many potential side effects is joint pain.

My dear friend, Ellie Goldenberg, had re-introduced me to the joy of dance in December 2013. It was a form of healing, a spiritual therapy. But by the summer of 2014, the pain was unbearable. I could barely walk. I had to give up dancing.

Before stopping the Tamoxifen, however, I wanted to rule out the possibility that the pain in my feet was something unrelated to cancer treatment. So I booked an appointment with my son’s chiropodist, Chance Ng, at the Bathurst Foot and Ankle Clinic.

First, I told Chance about my medical history and the peripheral neuropathy. After examining me and testing superficial and deep tissue sensation, he informed me, “You have no sensation in your feet.”

“I know,” I told him. That’s how I had started the conversation.

“Because you can’t feel anything, you’ve been placing your weight on the wrong parts of your feet when you walk.”

So, the excruciating pain in my feet had nothing to do with cancer treatment.

Then he told me, “All of the muscles in your feet have atrophied, and every joint in both feet is inflamed.”

I had a severe case of both plantar fasciatis and metatarsalgia. To complicate matters, my feet have a very rare shape. Chance called it a congenital deformity.

At least we have a diagnosis and a treatment plan. First, he created splints for my shoes to test a proposed shape for the orthotics. After a two weeks, the splints were flattened. He made them higher. After another two weeks, he cast my feet for the orthotics. I was also to ice my feet, rub Voltaren into all of the joints twice a day, stretch my calf muscles and sleep with a leg splint. The pain in my feet went from a 9 out of 10 to a 6 out of 10.

Today, I can walk or stand for about 10-15 minutes before my feet feel as though they are on fire. It’s a huge improvement!

I am working now on making a connection between my brain and the muscles in my feet. It’s not easy.

I look forward to when I can dance again.

Coping strategies for my feet:

Cycling is pain free, fortunately, and I was able to get back on my bike 14 months after spinal cord surgery.

I do not hesitate to use seating for people with disabilities or, wherever I am, to ask for a seat.

At parties, I will stand for up to 10 minutes, then I sit. Sometimes I sit alone, and that’s ok.

It should be noted, I choose not to take pain medication. My body is a toxic waste site; I don’t need any more crap inside me.

My head and neck

Because the first three vertebrae of my neck were fused, with some rather elegant hardware, I have limited rotation. It’s a lot better than it was a year ago, though.

Every afternoon, usually between 2:00 and 4:00, my entire head goes numb, and my neck starts to ache. This is my body telling me to lie down. It’s not just fatigue (also a feature of chemo brain), but my head is just too heavy on my neck.

By lying down for 30-60 minutes, the neck pain becomes manageable, and I am able to be up and about until after dinner.

By the evening, however, I have to be horizontal. If there is a late-night event, I will have a rest for about an hour beforehand and stay up for as long as I’m comfortable.

Coping strategies for my head:

My friends are quite used to me spontaneously crashing in the spare bedroom or, sometimes, in their bedroom, and they will help me move me to the couch when the party is over.

I always have a toothbrush and my meds on me.

My numb hands and feet

I had surgery on my spinal cord in July 2013. The numbness in my arms, hands, legs and feet caused by spinal cord compression persists, 18 months after surgery.

Aside from my aching feet, I have balance issues.

I used to fall a lot, really wipe out, particularly when there was an unevenness in the sidewalk. (It sounds so much better in Spanish, “disnivel,” or Italian, “disnivelo.”) My jeans or stockings rip, I’m bleeding in at least two places, I need someone to help me up.

Between September 2013 and June 2014, I fell down a flight of stairs five times, in spite of holding onto the banister. My hand isn’t strong enough to support my body when my feet give out.

The beautiful thing about peripheral neuropathy, though, is that you don’t feel a thing! Every time I fell down the stairs, I would stand right up. Amazing, I thought, I didn’t hurt myself. Only later to find a massive hematoma on my ass or, when later I notice dried blood on my foot, a missing toenail.

Similarly, my hands do not function as they should. Sometimes it’s hard for me to hold a pen, much less write legibly. I make mistakes keyboarding. Texting is a chore.

Again, I don’t feel pain in my fingers. When cooking, for example, I know that I’ve cut myself only when I see blood on the onion. (I regularly cut the lymphedema arm. Not good!)

I also bump into things without realizing. My myofascial therapist informs me of the bruises on the backs of my legs. Again, no pain.

Occasionally, I take a photographic inventory of lesions–the ones I can see. Here is an example:

Coping strategies for my numb hands and feet

Rule # 1: JDF – Just Don’t Fall

I move at one speed: slow. I never rush anywhere. I look at the pavement in front of me–always. I hold onto the banister–always.

If I have to walk in the evening, when my feet are at their weakest, I hold onto the arm of the person I’m out with. Sometimes that’s one of my children. Sometimes it’s a friend, or a date.

I do nothing on a bosu.

Rule # 2: PYH – Protect Your Hands

By keeping knives sharp, by cutting slowly, using hand lotion to keep the skin from drying, taking off my rings at night.

Instead of texting, call, FaceTime or Skype.

Break regularly when typing.

My stomach

My gastrointestinal system shut down completely, due to stress. I used to have a stomach like a rock, but all that changed, and it took months for me to figure out why.

In February 2014, immediately after my treatment had finally ended, a radiologist felt compelled to show me a mammogram image: there was a cluster of microcalcifications by the surgical clip, i.e., by the original tumour bed–an early sign of a breast tumour.

I chose to put faith in the fact that the radiation keeps working after treatment. I didn’t realize that the image I’d seen could have a traumatic impact on my psyche, and my body.

Two weeks later, I stopped absorbing food. I won’t go into gory details, but I will share that was a lot of weeping in the bathroom–until I saw my psychotherapist.

Immodium, bismuth, homeopathic remedies had no effect. Over the next three months, I eliminated any possible trigger food from my diet, stopped my medications one at a time to see if that had any effect, and had every test, including a colonoscopy, yet the results were all negative.

As a result, I developed a fear of eating–anything. I developed a disconnect between my brain and stomach. I can’t tell if I’m hungry or full.

Irritable bowel syndrome, as my older brother Carl informed me, is one of the stress-related conditions only seen in the West. Other examples are fibromyalgia and chronic fatigue syndrome.

I didn’t see my psychotherapist, Barbara Brown, for several months. (Our travel schedules conflicted.) She pointed out that, after the physical and psychological trauma I’d been through over the past year of surgeries and cancer treatment, it’s normal that some part of my body is going to suffer. It needs time to recover.

In eight months, I’ve lost over 30 pounds, or 20% of my body weight. I weigh less than I did 25 years ago, before I had my first child.

Coping strategies for my stomach

Daily meditation and energy work.

Conversations with my stomach, generally in the tenor of: “Take your time. After all you’ve been through, it will take time to recover. I understand and support the recovery process.”

When I ask my stomach what it needs to tell me, all I get is “Leave me alone.” I interpret that to mean, “Stop focusing on your stomach. It only makes it worse.”

Subclinical depression

In our meeting last month, Eitan Amir suggested that the persisting chemo brain may actually be attributed to subclinical depression.

“I’m not depressed!” I said.

“That’s what subclinical means,” he said. “You don’t have any symptoms. Some times a low-dose antidepressant will help cognition.”

I had no intention of adding another pharmaceutical to my routine, until he said, “It may also help your GI system.”

Then I reconsidered his suggestion. I told him I would talk to my family doctor about it.

He also told me he doesn’t think I have peripheral neuropathy, but central nervous system neuropathy, and he has referred me to a neurologist. (I’m not freaking out because there is no sense worrying until this has been confirmed.)

When Debbie and I discussed the suggestion of a low-dose anti-depressant, she was not in favour of it. “You can do meditation and energy work instead, and the outcome will be the same.”

I’d had four days of not-so-horrible diarrhea, so we agreed to give mindful meditation and energy work for a month and re-visit the issue in January. Although I was still having problems at our next meeting, both of us were comfortable forgoing the anti-depressant.

Conclusion

There are a lot of people in this world dealing with a lot worse.

I’m positive that my cognition will return to normal or near-normal function, and that, with time, my GI system will start functioning again.

As for the neuropathy, it is likely permanent. It’s been 18 months since the surgery, and there has been no change. It means my feet may not improve from current state.

I’m still lucky to be alive.

Dedication.

The remarkable Kris Carr, Crazy Sexy Cancer documentary filmmaker, bestselling author, cancer ass-kicker and wellness advocate recommends that everyone with a cancer diagnosis to recruit a posse, a power team to provide guidance and emotional support through treatment and survivorship.

My family and family-of-friends have been doing just that.

However, in addition to my Power Team at Princess Margaret Cancer Centre–breast surgeon extraordinaire David McCready, the most genuine and competent medical oncologist Eitan Amir, and the infinitely compassionate radiation oncologist Pamela Catton, and at Toronto Western Hospital, the shining star of spinal cord tumours, Michael Fehlings–I recruited a team of alternative healthcare practitioners.

My PMCC team addresses my disease.  The members of my Posse address my soul and manage the side effects of the treatments.

Debbie Honickman, Family Physician, Queen West Community Health Centre, 168 Bathurst Street (at Queen)

Although she is technically not an alternative care practitioner, Debbie Honickman practices medicine in an alternative–holistic–way. Debbie has been my family’s doctor for over 17 years.  We all love her.

My respect for her increased exponentially when she asked my son, then 11 years old, if he had any girlfriends. He giggled and replied no. Her follow-up question: “Any boyfriends?” Solomon, surprised, again answered no.  “Well,” Debbie said, “I don’t want to make any assumptions.” And there it was. A health professional has made it clear to him that it’s perfectly ok to love anyone he wants.  In other words, she normalized sexual diversity for him.  Hallelujah.

Debbie feels responsible for both physical and mental health, and always checks in.  It was her advocacy that moved the neuro team to book my spinal cord surgery, after my limbs went numb, by sending me to Emergency. It was Debbie who told me I would need time to recover from treatment.  And she still asks about my head and soul.

Debbie and I have the same birthday. She is older than me, but in much better shape. She and her husband are avid cyclists and they spend their holidays cycling in mountainous regions of France and Italy.  She is a role model and an inspiration, both to me and my daughter, Emily, who will enter McGill Medical School in 2015.

Barbara Brown, Pyschotherapist, Private Practice and Queen West Community Health Centre, 168 Bathurst Street (at Queen)

When I first met Barbara, before my lymph node surgery, I was in bad shape.  I saw her at her private clinic, knowing that I would only be able to see her once or twice because of my limited resources.

The upcoming surgery was to remove my lymph nodes and more breast tissue, because the margins surrounding the original breast tumour were too narrow.  Much of my anxiety about the breast cancer diagnosis was around my sexuality, how I perceived myself, and how others perceived me, clothed and unclothed.

Barbara affirmed my concerns and fears as normal.  While the majority of patients just “want it out” and will do whatever the doctor recommends, it’s perfectly legitimate to want to preserve myself, intact, even if it means living fewer years. She helped me to frame the conversation with my surgeon by letting him know that I understand the risks, and that most people just want to keep living, and asking him to join me in my goal of preserving my slightly modified self, just as I am.

To my great fortune, in December, the team at Queen West Community Health Centre, where Barbara works one day a week, agreed to accommodate me in Barbara’s very full schedule, where the service is covered. We worked together to define my goal, which was to become comfortable with uncertainty. Barbara also does body and energy work, and fear release work.  Her care, openness and wisdom led me to a new, safe place.

Thanks to Barbara, I am comfortable with uncertainty and, like the Buddhists, acutely aware of the preciousness of life.

Pamela Hammond, Registered Massage Therapist and Certified in Manual Lymphatic Drainage, Spadina Bloor Massage Therapy Clinic, 572 Bloor Street West, Suite 202 (across from Honest Ed’s)

I met Pamela through the Lymphedema Clinic at Princess Margaret Cancer Centre. I had already been diagnosed with trunk lymphedema by a clinican.  Pamela simultaneously provided lymphatic drainage therapy and counselling.  She listened to my fears and concerns, she comforted me, she encouraged me. As she treated me, she taught me how to self-massage, which I would have to do daily.

I saw her once or twice more at the hospital before I started seeing her in her private clinic, where I get an hour instead of 30 minutes.  Her technique incorporates European practice as well as kinesio taping.

On the last visit before I left on my Recovery Tour, Pamela gave me a gift: she said instead of charging me for the session, I should buy myself an amulet instead, something that would have meaning for me.

Because of Pam’s blessing, I’m convinced, I finally found a silver snake rink in an antique market, that fits perfectly. Both my daughter and I were born in the year of the snake on the Chinese zodiac, and I was diagnosed in 2013, the Year of the Snake, which was supposed to be a “power year” for me. I guess the power helped me survive a double diagnosis of breast cancer and a spinal cord tumour.

Susan Himel, Health Promotion Specialist and Knowledge Broker, Cancer Care Ontario

Aside from being a dear friend, Susan Himel is highly resourceful when it comes to cancer treatment and support, and she is very generous with her time.  She informs of things I didn’t know I need, and tells me what questions I need to ask.  She could be a professional patient advocate, but she is helping capacitate many more people in her role as a Knowledge Broker at Cancer Care Ontario.

I’m sure I have been leaning on Susan since shortly after my diagnosis. I have been feeding on her referrals to books, practitioners specializing in breast surgery patients and breast cancer resources on the web.

Lisa Chau, Registered Massage Therapist and Certified in Manual Lymphatic Drainage and Complex Decongestive Therapy, Toronto Physiotherapy, 741 Broadview Avenue (at Danforth)

Susan Himel recommended Lisa Chau, a lymphedema specialist, when I noticed the swelling in my back.  Lisa’s and Pamela’s techniques are different enough that they complement each other.  While I am usually quiet with Pamela (getting into a meditative zone), Lisa and I are often chatting, or laughing, through the treatment.

When Lisa asked me what my goal was, besides managing lymphedema, I told her I wanted to improve my immune system. She integrated moxibustion (or Moxa) into the treatments. It’s a plant formed into sticks that are placed on acupuncture points.  She uses Moxa when she volunteers at centre for people with HIV. It’s a bit mysterious, but it smells nice.   And hey, it can’t hurt.

In my third session with Lisa, I tentatively asked her if she thought my lymphedema was treatable.  She answered confidently, “Absolutely!”  And she was right.  With daily self-massage, regular treatments and compression bras/garments, the swelling subsided.

Following a flight in the spring, I developed lymphedema in my left arm. I was anxious but with the help of professionals, it is now under control.

 

Angela Warburton, Traditional Chinese Medicine Practitioner and Registered Acupuncturist, Urban Wellness, 489 College Street, Suite 301 (College and Bathurst)

Angela was another referral from Susan Himel, who got Angela’s information from Lisa Chau. Angela studied integrative cancer care, and Urban Wellness is a one-stop shop for healing. They even have free group meditation on Fridays at noon.

The clinic is lovely and serene, with high ceilings and soft, warm colours. Lots of natural light.

Angela’s consultations are long and thorough, covering every aspect of my health: diet, exercise, social support, mental health, sources of strength. She has helped me to reframe things, for example, my daily massage routine. I told her that having to massage my upper body and arm, to stay on top of my lymphedema, and the scar tissue, was a daily reminder of my diagnosis that I was becoming resentful of. Angela suggested I look at it another way. “Try to think of this act of self-care as a loving touch.” It took a while, but I eventually adopted this attitude and, as a result, I’m generating positive energy when I do this.

She also told me that my afternoon nap should be the one appointment with myself that doesn’t get cancelled.

David Dennis, Naturopathic Doctor, Urban Wellness, Urban Wellness, 489 College Street, Suite 301 (College and Bathurst)

After I entered the beautiful place known as Remission, I decided to get proactive and try Vitamin C Infusion Therapy: 50,000 mg of ascorbic acid through IV, twice a week for three months. An aggressive protocol to get me started.

There is a lot of controversy about this therapy. There is no way to patent Vitamin C, so there is no motivation for drug companies to invest millions in clinical trials. According to the American Cancer Society, there is evidence to support the theory that intravenous Vitamin C helps create an alkaline environment which discourages cancer cell growth. And yet. There is enough anecdotal evidence, from people I know, that convinced me to try it. Howie Simon (see below) is on the side of the ACS, but he admits that it can’t hurt me.

So, what the hell.

When we started, David used the left arm, because the most of the veins in my right arm had sclerosed during chemotherapy.  After four or five sessions, I withdrew, fearing the 600 ml of fluid into my left arm might result in a flare up of lymphedema. After a month or so, I went back to David and asked if we can try the right arm. It’s not easy, but I’m moving forward, hoping it will reduce my risk of recurrence.

David also teaches and leads meditation classes outside of Urban Wellness.

 

Aaron Stewart, Registered Physiotherapist, MSc, MScPT, Cornerstone Physiotherapy, 2 Carlton Street, Suite 1800 (at Yonge)

Aaron, who also spells her name Erin, is the best rehabilitation physiotherapist I have worked with.  She identified my challenges and worked with me to identify my goals, which were reducing pain, increasing strength in my shoulders, in order to support my over-strained neck and trapezius muscles, and maximize rotation of my neck.  Since the first three vertebrae are fused with hardware, I will never regain full rotation.  But I wanted to be able to drive and ride my bike again.

Aaron’s approach is specific and scientific, explaining as she works.  She works on mobilizing the lower, unfused cervical vertebrae. When she introduces new exercises, she sends me a follow-up email describing them.

It was Aaron that identified left-sided weakness in my left abductor muscles. She referred me back to my neurosurgeon for testing.

Between visits, I do my exercises assigned to me, as I am able.  It’s hard work.  It hurts sometimes.  And if I do the neck exercises in the gym instead of at home, it looks weird.  But it’s working.

Carla Jensen, Registered Massage Therapist specializing in Myofascial Release, Harbord Health Centre, 100 Harbord Street (west of Spadina)

Susan Himel also recommended me to Carla Jensen, who specializes in myofascial massage, defined in Wikipedia as “ a soft tissue therapy for the treatment of skeletal muscle immobility and pain.” It is especially useful for breaking down scar tissue beneath the skin, where adhesions often form and limit range of motion or circulation or both.

“Women are usually repulsed by their breast scars,” Susan had told me.  So true!  I went wild on the scar on my neck after the spinal cord surgery, massaging it twice a day with silicon gel, the best treatment available.  But not my breast.  It was and still is difficult for me to even look at my affected breast.  Yes, David did an awesome job, but this was no longer a familiar part of my body.

I saw Carla twice before my lymph node surgery, and prioritizing appropriately, she chose to work on my lower cervical spine and my problem left shoulder, weakened by the spinal cord surgery.  Sometimes I experience pain with the treatment, but the results are the proof of the pudding.  My neck rotation has definitely increased.  And she taught me a variation of the neck exercises I had been doing, to get more reach.

Since the spring, she has been working on the scars on my breast and under my arm, and I, too, finally became comfortable with self-massaging my scar tissue.

Very recently, she started working on the scar down my cervical spine, an area she couldn’t have touched even six months ago. It wasn’t just that we needed time to heal from surgery. There was a lot of fear embedded in that area.

“We hold things in our body where they can’t be touched,” Carla told me.

I wonder what other emotions I might be holding, hiding in my body.

Ryan Hayes, Registered Massage Therapist, Toronto Healing Arts Centre, 715 Bloor Street West (at Christie)

I’ve been seeing Ryan since 2006, when he was at Sutherland Chan.

He practices integrated massage therapy, incorporating elements of craniosacral massage, osteopathy, Reiki and other techniques. You can find traditional Swedish anywhere. What Ryan offers is another level of body treatment.

Coincidentally, I recently had dinner with two people who were also clients of Ryan’s. We were all in agreement that he is truly remarkable.

 

Harriet Wichin, Assistant Executive Director and Director of the Community Choir, Miles Nadal Jewish Community Centre, 750 Spadina Avenue (at Bloor)

While Harriet is not an alternative healthcare practitioner, she is a healer.  Harriet has directed the Community Choir at the MNJCC for 17 years.  This is my fourth year with the large, audition choir.  There is a waiting list made up of people who passed the audition.  It’s that good.

The choir is so special because Harriet is so special.  She is a gifted conductor, feeding us inspiration and drawing out beautiful song from our often weary souls.  We love her metaphors and analogies.  She makes us laugh.  Choir is a combination of yoga and therapy.  The choristers, themselves, are an exceptional group of people. At any given time, a number of us are suffering—a loss, a diagnosis, a death—and everyone is there to rally with offers of help, or just to listen.

When I was diagnosed in March, a couple of months before the 2013, I withdrew from the choir.  It would not be possible for me to sing in the concert, but I attended a dress rehearsal and cried throughout.  Harriet turns hay into gold, and sitting in the audience, it was the first time I could truly appreciate it.

During the summer of my chemotherapy and spinal cord surgery, I was working out daily at the gym in Trinity Bellwoods Park.  A bit grotty, but cheap.  In September, Harriet gave me a pile of guest passes for the beautiful gym at the MNJCC, complete with state of the art equipment, yoga classes, and a Jacuzzi, sauna and steam room.  It was like heaven.  “Let me know when you run out, I’ve got plenty.”

And just like that, I transitioned to the MNJCC gym community, a welcoming and safe space.  I could walk around the women’s locker rooms with a towel around my waist, with my slightly deformed left boob, and no one cared. I felt, and still feel, completely comfortable.

Howie Simon, Researcher of Alternative and Experimental Cancer Treatments, North Toronto

I was introduced to Howie by my dear friend, Rosemary Frei. After my lymph node surgery results came in, I was freaking. Rosemary said I should talk to Howie.

I sent Howie my pathology report and he wrote back, suggesting I ask for further tests on my tissue.  These were not available at Princess Margaret, unfortunately.

Eventually, we met in a cafe near Bloor and Spadina. He explained, or tried to explain, cancer at the cellular level. He drew pictures. He even called an immunologist, whom he considered to be the best in the world, during lunch. The immunologist lives and works in Tel Aviv.

Howie has been a great help and friend to me over the last 10 months. He knows who is doing what in all types of cancer: new drugs, clinical trials, experimental therapies. I ask questions. I try to understand.

At one of our first meetings, he named a couple of researchers and told me about their promising work. That’s how I connected with Paolo Lissoni.

 

Paolo Lissoni, Oncologist, San Gerardo Hospital, Monza, Milan, Italy

After reading several of Paolo’s articles on breast cancer research, I started taking 10 mg of melatonin.  Since contact information of the principal investigator is available, I figured, what the hell?  So I emailed him my pathology reports, a brief summary of my history, and I asked if I was eligible for Interleukin-2 therapy, used for malignant melanoma and renal cell cancers.   And I waited for a response.

A week later, after I had given up waiting, the imminent and prolific neuroendoimmunologist (who also holds a Ph.D. in Theology and has published books on everything from cancer to the split of the church to sexual spirituality to human rights) responded to my message.  No, I was not eligible for IL-2 therapy, as it is not approved for breast cancer patients.  But I didn’t need it, he said.  All I had to do was take 20 mg of melatonin every night and 500 mg of honokiol, an extract of magnolia, each morning, without interruption, for at least one year. I started immediately.

He also encouraged me to write to him about anything at all.  So I sent him a link to The Mental Breast, and he sent me an article he wrote that affirmed I was on the right path: conditioning my immune system by focusing on joy and pleasure.  In other words, stimulating and supporting the pineal gland and suppressing the nasty hormones released by the adrenal gland, namely cortisol, the stress hormone.

I had the honour of dining with Paolo in April of this year.  We spoke in Italian and English, as we were able; not just about my case, but about research ethics boards, the survival of the human race, and the path to world peace.  No leukocyte trafficking for me, as sexy as it sounds.  He firmly believes in psychoneuroimmunology.  I’m already on it.

When I checked into The Drake Hotel for a staycation, I didn’t expect to check out with a life-changing diagnosis.

As in many boutique hotels, The Drake Hotel’s bathroom walls are almost entirely glass, affording little privacy. The showers stalls are oversized, with large, dark tiles, except for one wall which is mirrored from waist height up.

I was facing the mirror in the shower, pinning up my hair, when I noticed a dimple on the outside of my left breast, around 4:00.

What the…

And then I felt it. About the size of a cherry, against my chest wall. And firm.

How long had it been since I’d checked?  I couldn’t remember.  My family doctor examined my breast at my annual physical about six months earlier, and she always did a thorough job.  It wasn’t palpable then.  Don’t panic, I told myself.  Nine out of 10 lumps are benign.  And yet.

It was Friday, March 1, the last night of my staycation.  Although some discussion about my discovery was necessary, I wasn’t prepared to let a lump spoil a precious evening at The Drake.  “It could be nothing,” he said, trying to make me feel better, but clearly worried himself.

Saturday morning, I was subbing for the cantor during Shabbat services.  While leading the congregation in song, I tried to focus on the pronunciation of the Hebrew, a language I do not speak, over the continuous whisper of “lump lump lump” in my head.

The following week I was booked for Jury Duty.  As soon as I had a chance on Monday morning, I called my community health centre (CHC) and told the woman who answered, “I found a lump.  I need to see someone.  Anyone.”

“You found a lump?” she asked.

“Yeah.”

She didn’t have to ask me where it was.

My family doctor was on vacation for two weeks. “How about tomorrow evening at 6:30?  You can see a nurse practitioner.” I thanked her and breathed a sigh of relief.

Tuesday: Nghi had recently started working at Queen West CHC. Even though we were meeting for the first time, her warmth and professionalism were comforting.  First she asked me to lean forward, then she had me lie down and she felt the lump.  “I’m going to give you a referral for a mammogram and an ultrasound.” She didn’t frighten me, or downplay the situation either.  She acknowledged my anxiety.

Wednesday: I was at the diagnostic imaging centre on Edward Street, a block from the courthouse, at 7:30 the next morning.  They managed to squeeze me in for a mammogram. My first.  I was 47.  I had no risk factors. I’m active and fit and eat consciously, for pleasure and for health. I practically live on my bicycle. It wouldn’t have occurred to me, or my GP, to have an early mammogram.

When I went back to the courthouse, I returned to the jury pool room, a purgatory without wifi.  As if the lump wasn’t enough of a downer, I spent that stressful week in a room the size of a gymnasium that desperately needed a paint job and new carpets.  There are many rows of chairs, all uncomfortable, some tables and also a dozen or so workstations.  As we sat around and waited to be called for jury selection, I worked on a presentation at one of the tables, but didn’t engage in conversation.

We were allowed to step into the hall outside the pool room to make calls.  There were still booths where pay phones used to be installed, and I stepped into one of these for some auditory privacy to call my older brother, Carl, an infectious disease specialist and my soul sib.

“How ya doin’, hon?” is how he opens the conversation, because he knew I wouldn’t be calling him during working hours if it wasn’t important.

“I found a lump.”

“Oh, babe…” and that was the first time I cried since I felt the lump in the shower.

My brother asked some questions, and as I answered, the tears were streaming from my eyes. The court staff are watching me through the open doors, and I just didn’t know where I could hide myself. I slid down against the wall of the ex-phone booth and covered my face with my free hand.  “I can come up tomorrow,” he said.

“Up” meaning up to Canada.  My family is scattered across the U.S. and abroad.

“No, it’s ok.  I’m leaving soon anyway.”  And then I added, “Please don’t tell anyone. Not yet.”

Thursday: I got an ultrasound on Edward Street during the lunch break from jury duty. I mentioned to the technician that I was leaving on Sunday for Oakland, for a week. I was scheduled to present a paper at Diversity Rx, a national conference on quality healthcare for diverse populations.

She stopped scanning for a few seconds.  “You have to wait for the results. You may not be going anywhere.”  With that statement, my heart skipped a beat.

After the scan, the technician left the room with my chart and brought it to the radiologist, asking that my case be reviewed next.

At the end of the day, I left through the back door of the courthouse and saw, for the first time, Eldon Garnet’s 2012 sculpture of a lion and a lamb sitting on a level plank.  The plank is perfectly balanced on the tip of a pyramid bearing a quotation I know by heart from the Charter of Rights and Freedoms of Canada: “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination.”

Funny, I thought.  Cancer does not discriminate either.  Rich, poor, healthy, unhealthy, fit, couch potato, loved, unloved.  No one is spared for good behaviour.  Or for any behavior.

I called my Community Health Centre (CHC).  They had already received the results.

Friday: I was at the CHC when they opened to get the news in person: I needed a biopsy.  I saw Nghi, the same nurse practitioner I’d seen earlier in the week, and another nurse practitioner, Rosie, whom I’ve known for 15 years. She said she knew how anxious I must be, not knowing.

Thinking about what the ultrasound technologist had said, I asked Nghi and Rosie if delaying the diagnosis for a week would impact outcomes, and they assured me it wouldn’t.

I connected with a friend and colleague at the Princess Margaret Cancer Centre and managed to get a referral to the Rapid Diagnostic Breast Clinic. Rapidly.  An appointment was booked for the morning after my return from Oakland.

It helps to be a staff member at University Health Network when you need any kind of care.

On March 18, at the Rapid Diagnostic Breast Clinic, I first met with Sandy, a nurse practitioner, who explained the sequence of the day.

She also asked if I had an Eastern European Jewish background.  I was taken aback.  Is she asking because of my name?  “Yes,” I answered, wondering why that would be relevant.  Sandy told me about the BRCA gene that is carried by some people with an Ashkenazi background, which means an increased risk for breast and ovarian cancer in women, and prostate cancer in men.  She encouraged me to get tested.

The mammogram and ultrasound were repeated before the biopsy.  When it was all over, I was told to come back in four hours for the results, which is nothing short of revolutionary. Thanks to a $12.5 million donation from Emmanuelle Gattuso and family, women can get biopsy results same day.

I live downtown.  I went home.  I poured a glass of Prosecco and drew a bath, with Epsom salt and lavender oil.

Before I climbed into the claw foot tub, I already knew.

I knew because of the technician’s urgency to have my results expedited.  And because Rosie had probably seen enough mammogram and ultrasound reports to know when someone is about to be diagnosed.

As I soaked and sipped Prosecco, I listened to music that my daughter had loaded on my phone.  Each song seemed to speak directly to my state of mind and circumstances. I had a few short hours before hearing my diagnosis, and I had every intention of enjoying the liminal stage of waiting for the results.

The fact is, I have so much to be grateful for, and I had documentation.  About 18 months before the lump, I started a gratitude journal. I wrote about things big and small, moments and experiences, gestures and what I called “gifts from the universe.”

Hardly a day went by that I didn’t shake my head at how fortunate I was.  I felt like Julie Andrews in The Sound of Music, when she sings “I must have done something good.”

I’ve always considered myself lucky because I was born into a North American, middle class family with parents who loved me and told me I was capable of accomplishing anything I set my mind to. I would always have a roof over my head, access to clean water and didn’t have to worry about where my next meal was coming from. My work is fascinating and rewarding. My extraordinary children, Emily (23) and Solomon (16), are happy and healthy.  I have an amazingly loving family, and I love and am loved by friends who feel like family.  My romantic life could fill novels.

In short, life was better than I had ever dreamed it could be.

With my body immersed in hot water up to my neck, blissed out on the music and my last moments of ignorance, I thought, “I have to take some bad with the good.”

Back at Princess Margaret, this time accompanied by a close friend, Sandy met with me first to tell me the tumour tested positive.

I wasn’t surprised. “I figured it would be,” I said.  Sandy asked if I needed a minute, but I didn’t.  I said I was okay and asked what my options were.

Although I could choose a mastectomy and immediate reconstruction, she said they recommend a lumpectomy.  I asked her what stage it was, and she said, “Probably stage I or II.”  Sounded good to me. Early stage, easy to treat.

My friend, who had known about the lump since shortly after the discovery, was very sober after Sandy left the exam room.  “Are you ok?” she asked.

“Yeah, I’m ok,” I said, and meant it.  I was completely relieved at dodging the mastectomy.

When David McCready, my breast surgeon and head of the Breast Program at Princess Margaret Cancer Centre, came into the room, he examined my left breast matter-of-factly.  It could have been an apple at a greengrocer’s. He reiterated information that Sandy had given us and recommended a lumpectomy.  Breast-conserving surgery and radiation had the same outcomes as mastectomy.

“I’m so glad I get to keep my breast,” I told him. “I like having two.”

I asked about prognosis, but David said he doesn’t like to get into the “numbers game.”  Everyone is different.  At Princess Margaret, he explained, they practice evidence-based medicine and give “maximum treatment and expect the best outcomes.”

He left and two nurses came in to obtain my consent for the lumpectomy and sentinel node biopsy.  We started talking about surgery dates.  I opened my agenda to the page where you can see the entire year.  I had diligently highlight my away dates over the next few months.

The nurses looked at the page and then looked at me, with supportive and knowing smiles.  “You’re going to have to cancel your plans.  You have to put your health first.”

Yeah, right.  As if cancer could keep me from the maiden voyage of the Norwegian Breakaway, following the same course as the Titanic, with my daughter and our dear friends, or a presentation at a World Health Organization conference in Sweden.

A decision to cancel such singular events would just be feeding my own fear.  What if I never had the chance to do these things again?

I closed my book and said nothing.

Breast Cancer: How Your Mind Can Help Your Body

After learning I had tested positive for breast cancer (“probably Stage I or II,” according to the Nurse Practitioner), I got dressed.

Of course, I remembered very little from the conversation with my surgeon David McCready.  That’s why it’s always good to have a buddy.  My friend explained her shorthand and reviewed the discussion with me.

We walked out onto University Avenue.  My friend gave me a big hug before I crawled into a cab.  A few minutes later I received a text message from my family doctor, who returned from vacation that day: “Are you ok? I just saw the reports.”  Remarkable timing, I thought.  “Yes,” I wrote back, “It’s positive, and I’m ok.”  She responded for me to come see her the following day.

My next message was to my daughter, Emily, who was in Paris, to tell her I would Skype at 10:00 pm her time.

As soon as I arrived home, I told my 16-year-old son, Solomon, that we had to Skype Emily.  “It’s important,” I said.

“What’s going on?” he asked, and a wave of remorse washed over me. The news is going to change his life. And Emily’s.  Crap.

When we connected a few minutes later, Emily asked, “So, what’s up?”

How to tell the people you love the most about a crappy diagnosis?  This is something you never want to hear from someone you care about.  And yet, there was no possible way I could keep this a secret, not from my family.

“I have some bad news,” I started.  “I’ve been diagnosed with breast cancer.”  And they were both incredulous.   What? How? Why?  And tears.

Solomon hugged me, hard, then squeezed my hand and held it through the rest of the conversation, hugging me at intervals.

“Look,” I said, trying to be practical, “they said it’s early stage.  If you’re going to get cancer, early stage breast cancer is the one you want.  Almost everyone survives this.  If anyone else can get through this, then you know I’m going to get through it.  I’m a tough cookie.”

We talked for a long time. So many questions and so many I-don’t-knows, followed by a lot of it’s-going-to-be-ok’s and I’m-going-to-be-fines.  And it’s true, I really was ok with the diagnosis and highly confident that I was going to beat this and get on with my life.  I was busy and didn’t have time for this nonsense. Although they were very scared, Emily and Solomon eventually believed me.

Then I called my older brother, Carl, who had kept my secret about the lump and the diagnostic imaging, then my parents.

My dad‘s first words were, “Fuck fuck fuck” and during the question-and-answer, he would interject with “I’m not ok with this” and “I’m not happy.”  I wished I could have told him in person, to hold his hand and hug him.  “It’s not so bad,” I told him.  I’m young and healthy, except for the cancer thing.  I’ll get through this.”

I disclosed to the rest of my family and close friends over the next few days.  Sharing crappy news doesn’t get easier each time. It gets crappier.

Thanks to a cancellation, I was scheduled for surgery on March 28, just 10 days after my diagnosis.  Good, I thought, get it over with.  I can recuperate during the Easter long weekend and be back at work on Tuesday. When the time comes, I’ll sneak out for radiation appointments and schedule mock meetings in my work calendar to cover my absence. No one needs to know.

That was my plan until the pre-breast surgery class at Princess Margaret, two days before surgery date.

March 26: My jaw almost came unhinged when the facilitator said, “You’ll need to take six to eight weeks off work after surgery.”

What??  I can’t be off work for six to eight weeks.  It’s simply impossible.  I have so many balls in the air.  Big balls.  And it’s the end of the fiscal year.  April is insane.  I can’t transfer all of my responsibilities in a day and a half.  Holy….

Two of my staff interpreters were scheduled to meet with me when I returned to the office after the pre-surgery class.  “First,” one of them started, “you’re not allowed to go away again,” referring to my recent trip to California. She was smiling because I had just returned from Oakland and there had been a couple of incidents.  In my absence, they’d cleaned up the mess, but some follow-up was needed.

It was killing me not to disclose my diagnosis.   How could I tell them that I was going to be away for almost two months?  Then the fog clears.  Of course! I can work from home.  I’m not really going away.

Over the next 24 hours, I informed my supervisor, my staff and my circle of friends and did what I could to brief the Acting Manager.  “It’s just for a couple of months,” I told her, and since I live so close to the hospital, “You can come by any time.  I’m not going to disappear.”  And I truly believed it.

March 28: My posse of loved ones escorted me to hospital: my dad, my son, Solomon, and Emily’s father, Stephen Parkinson.

Before the surgery, I used a pink Sharpie to write on my right (healthy) breast “What, no dinner first?”  Why not add a little humour to the operating room?

I woke up from surgery in time to say goodbye to my son, who was off to join his sister in Paris.  My dad, who “came up” from the U.S. for the event, waited until we were alone before telling me what David had related to him when the operation was over.

In the best matter-of-fact tone he could muster, but without making eye contact, he said, “So…you’ll have to have some chemo….”

“What?!?”  Who changed the program while I was under anesthesia? “Chemo??”  But of course, my dad was upset, too, 

And for the second time since that fateful night at The Drake, I wept.  My dad wept, too.

Telling Your Friends and Family

Life Interrupted: Posting Your Cancer on Facebook

Taking Time: Support for People with Cancer