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

 

 

Fortune Cookie Tango

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My Bat Mitzvah sermon, September 3, 2016

Thank you to Rabbi Goldberg and Congregation Shir Libeynu for guiding me and allowing me to celebrate my Bat Mitzvah with you all.

Fortune Cookie Tango

Four years ago I had the honour of giving the d’var Torah on Yom Kippur. I talked about my grandmother, my relationship to Judaism and the moments and experiences I revere. Six months later I was diagnosed with advanced stage breast cancer.

I suspected the biopsy would be positive, so I had brought my agenda and showed the nurse practitioners my away dates, all highlighted. They told me, “You’re going to have to cancel all of your plans. You have to put your health first.” I closed my agenda and said nothing.

I wasn’t about to let cancer stop me from living. At the next appointment, I pushed back.

Between breast surgery and chemotherapy appointments, I took a transatlantic cruise with my daughter and five dear friends. I presented a paper at a meeting in L.A. and then another at a World Health Organization meeting in Gothenburg, Sweden.

When I returned to Canada, my medical oncologist informed me of an incidental finding on a full spine MRI: I had a critical tumour measuring 2.4cm and taking up most of the space in my spinal canal, compressing my spinal cord at the first cervical vertebrae.

My chemotherapy was interrupted for urgent surgery. Without the surgery, the tumour would have eventually stopped my ability to breathe or my heart to beat.

Spinal cord surgery makes cancer seem small.

As the months and years passed, every visit to one of my medical teams brought more bad news: my breast pathology was an outlier and wholly unexpected; it was suggested that I may be chemo-resistant. Next, I was told that my peripheral nerves would not regenerate, as the doctors originally assured me.

The central nervous system was involved, and the spinal cord or spinal nerve was permanently damaged. There is no treatment or cure. I use a cane to keep from falling, because I have no proprioception.

In July last year, the neuropathy, or lack of sensation, started progressing. In spite of keeping active and exercising, I continue to lose strength. My muscles are not responding to my nerves.

Living with two life-threatening diagnoses is a privilege: I get to choose how I spend my time, who I spend it with, and how I use the energy that I have available.

Like any normal 51-year-old single woman, all I want to do is drink and dance and date beautiful men.

Sadly, I can’t dance anymore. The muscles in my feet atrophied in 2014, and all of the joints in my feet are inflamed.

My daily goals are simple:

Put my legs through the right holes in my underwear

Walk out of the house with matching earrings

Don’t piss myself. Or worse.

And don’t fall.

In spite of these challenges, I manage to hold on to the things that bring joyous experience into my life.

No one gets a free pass to a healthy life. It’s a crap shoot, so my number one job is to live a good life.

This sermon, and my belated Bat Mitzvah, is about celebrating, because I chose to keep living out loud, in spite of the inevitable, and it’s also about a fortune cookie from a few weeks ago: A surprise announcement will free you.

I have yet to receive the surprise announcement, yet the idea of being set free appealed to me. However, I was more interested in claiming agency of this future transition to freedom.

I wanted to set myself free.

Recently, I experienced what I call a spiritual transition from concern for my future to a safer and more comfortable place: the present. I have surrendered my worries of the future and take comfort in the moments of pleasure and joy I experience with my friends and family or on my own.

A few days ago, I immersed myself in a Mikvah Bath with Rabbi Goldberg and several friends present. I had three intentions, or meditations, for the Mikvah ritual.

The first intention was gratitude.

I am grateful for the love of so many people, most especially my children, Emily and Solomon.

There are 24 members of my immediate family, from ages 1 to 79. That’s a lot of love in one family.

My friends, who are like family, create an impenetrable bubble of love.

A shout out to Jim Summers, Harold Van Johnson and Steve Roy, who have been uncles to my children.

I am grateful for my abilities, and for my communities. And I’m grateful for the men I’ve loved and left, the men loved and lost, and for the men who keep me smiling.

I am also grateful for a friend who decided to teach me tango even after the neuropathy progressed. When he arrived for the first lesson, I warned him that my condition had changed. “I know,” he said. “I’m going to teach you tango until you can’t walk.”

And he has kept his word. I’ve been learning tango for a year. And in the evening when my feet are on fire, I don’t mind. Tango is worth the pain.

I used to think that what I found holy was the energy created by two or more people, the moments that are never repeated, but remembered.

Now I understand that life is about relationships. It’s all we have. Nothing else matters. We can all choose either to nurture our relationships or neglect them, and we live with the consequences of our choices.

The second intention of the Mikvah ritual was acceptance.

Cancer is not a journey—it’s an acid trip. A surprise at every turn.

In her article entitled Cancer is Not a Journey, Jane Cawthorne xox wrote cancer is “a kidnapping. A hijacking.”

Survivorship is a crap shoot without meritocracy.

Spinal cord injury is also a kidnapping or hijacking. There is no predictable pattern of progression.

My family physician of nearly 20 years, Debbie Honickman, told me early on that I needed to work on the acceptance piece.

That was a tall order! Yes, I was told that central neuropathy tended to progress, but I dismissed the possibility. That was for older patients who weren’t active. I never thought it would happen to me.

My psychotherapist Barbara Brown worked with me for two years before I finally surrendered. I surrendered to the futility of worrying about the future, of wondering what the next stage will bring. It’s a waste of time.

After three years of news that kept getting worse, I found peace in the unknowing: of tomorrow, or next year. I am aspiring to follow the path of the Buddha and live in the now.

The third intention of the Mikvah ritual was release.

My life has been rich and full. I have no complaints. This is the card I was dealt, and the moments and memories overshadow my challenges.

The acceptance piece led to my release of obligations, expectations and responsibilities.

I am also released from fear—because I chose to.

I have freed myself. I will continue to live a good life until I can’t.

My belated Bat Mitzvah was my father’s idea. The importance of the event clearly meant more to him than it did to me. However, I liked the idea of formalizing my place in the Jewish community.

My father asked if I was going to do a Mikvah Bath, something I had seen only in movies. And then Rabbi Goldberg asked as well. I was excited by the idea but did not know how I would feel.

Rabbi Goldberg guided me through the preparation. We worked together on my intentions or meditations to conform to what felt meaningful and authentic for me.

I descended into the warm water. My guests—Harriet Eisenkraft, Rosemary Frei, Barbara Brown and Gary Klein (in another room, able to hear but not see)—were present to witness and affirm the ritual. By candlelight, they spoke, they sang, they watched me immerse myself three times, and I cried.

My tears ran into the living rainwater of the Mikvah Bath.

 

 

 

 

 

 

January 2015: How I feel now

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With Steve Roy at Massimo Bruno's Supper Club, Toronto (28-11-2014)

With Steve Roy (sporting a Movember ‘stache) at Massimo Bruno’s Supper Club, Toronto (28-11-2014)

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:

Fridge List: I actually take handfuls of supplements, not just iron.

Fridge List

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.

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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:

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Hematoma

Hematoma, right hip, following fall down stairs

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Hard to see, but the circulation of my second toe was cut off because of a hole in my panty hose. Didn't feel a thing.

Hard to see, but the circulation of my second toe was cut off for hours because of a hole in my panty hose. I didn’t feel it.

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.

Immune Function Conditioning: An Experiment

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I was diagnosed with breast cancer on March 18, 2013.

Ten days later, I had a lumpectomy and sentinel node biopsy, a procedure to remove the lymph nodes closest to the affected breast.  All but one node tested positive for cancer, and the cancer had spread outside the lymph nodes as well.

Although the tumor was relatively small (1.7 cm), lymph node involvement meant the cancer was Stage IIIa.

I was 47, fit and active, and otherwise very healthy.  I had no risk factors.

Six weeks later, on the day before my first chemotherapy treatment, my oncologist informed me that a full spine MRI revealed a benign but large (2.4 cm) tumor compressing my spinal cord between the first and second cervical vertebrae, just beneath my skull.

MyMeningioma

I was referred to a neurosurgeon who specializes in spinal cord tumours.

A few weeks after the nuerosurgery consult, I started losing sensation in my limbs. Each day, another part of an appendage went numb.  Chemotherapy was interrupted for life-saving neurosurgery.

Post-chemotherapy, on November 14, I had an axillary lymph node dissection, the removal of a large rectangle of tissue under the arm. As was the case with my sentinel node biopsy, all but one node tested positive. And the cancer had spread extensively outside the nodes, in spite of four months of chemotherapy. It is not a typical finding, and since I was–and still am–symptom free, I was stunned by the pathology report.

Until that point, I had been handling the diagnosis exceptionally well, convinced that if other women had beat this disease, I can.

After a week of freaking out, I thought back to a conference I had attended in May: the International Health Promoting Hospitals and Health Services Network of the World Health Organization, which took place in Gothenburg, Sweden.

The theme of the conference was Body and Mind.  One of the streams of the conference was psychoneuroimmunology (PNI), the study of the relationship between mental processes and the nervous and immune systems.

A paper on PNI was presented at the opening  plenary session.  I went to Sweden to present a paper at a W.H.O. conference–a lifetime achievement for me–but during that presentation realized I was meant to be there, to hear that message.

The connection between mind and body, between mental health and physical health, has been around for centuries, but in recent decades, researchers have confirmed that mental health status has a direct impact on immune response–at the cellular level. That is, the body’s ability to resist or rid itself of disease is impacted by one’s psychological health. Poor mental health status may compromise the body’s ability to deal with ailments from infections to chronic diseases, including cancer.

I’ve complied fully with the treatment regimen recommended by the teams at Princess Margaret Cancer Centre, as well as best advice from alternative care practitioners. Nevertheless, part of my body was full of carcinoma.

My goal is to control what I can.

How to improve my mental health status?  Here’s what I’m already doing:

  • Spending time with people I love
  • Exercising
  • Having sex
  • Meditating
  • Working with a psychotherapist
  • Listening to music
  • Singing
  • Sleeping well
  • Laughing as often as possible
  • Making time for activities I love

I’m making a commitment to do much more of all of the above, and add anything else that causes endorphins to be released into my blood, or anything that makes me smile. I will also explore brain-training exercises to reduce the levels of cortisol (a hormone released in response to stress) and reach deeper levels of mindful meditation.

This site will document my quest to improve my mental health with an aim to condition my immune function and, by extension, optimize my outcomes.

I will also use this space to document my medical experience, which has been more of an acid trip than a “journey.”  Welcome!

Introducing my Posse of Outstanding Alternative Healthcare Providers

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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

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.

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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.

Pam Hammond

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

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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)

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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

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

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

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.

ryanhayes

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

 

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

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.

Acid Trip – Part 1: A staycation never to be forgotten

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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.”