Acid Trip – Part 2: Rapid diagnosis

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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

Acid Trip – Part 3: The act of disclosure

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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

Acid Trip – Part 4: An incidental finding

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Tripping the light fantastic with James Summers on the Norwegian Breakaway, maiden voyage

Tripping the light fantastic with James Summers on the Norwegian Breakaway, maiden voyage, post-op

To chemo or to cruise…that is the question

Once I recovered from surgery, I knew I would have to start chemotherapy. I only had one small problem: I had a date with my daughter and a Transatlantic cruise – the trip of a lifetime – one month post-op.

I knew that cancelling the cruise, and other events I was looking forward to, would be surrendering to the disease.  This was contrary to my nature.

When we met a few weeks after my surgery, I informed my medical oncologist, Eitan Amir, that I was not going to cancel any of my plans.

The Norwegian Breakaway was scheduled to launch from Southampton, England on April 30, 2013 and arrive in New York on May 7. After a brief visit with my parents, the plan was to fly to California, give two workshops to physicians and administrators, then visit my younger brother, Scott, and sister-in-law, Stacy, before returning home.

A week later, I was to fly to Gothenburg, Sweden, to present a paper at a meeting of the Health Promoting Hospitals Network, a partner organization of the World Health Organization Europe.

“You’ll have your first treatment on May 15th, between California and Sweden,” Eitan said.

I like Eitan. He’s an Israeli with a charming British accent, super smart, and straightforward.

“Okay!”  I knew I was taking a risk, leaving the country without knowing how I would react to the chemotherapy, but I didn’t know if I would ever have another opportunity to present to this group.

Ironically, two years before the cruise, Emily had suggested that we grow our hair and donate it to one of the organizations that makes wigs for women who have lost their hair to cancer.  After my diagnosis, we decided to raise funds for research at Princess Margaret Cancer Centre.  Our hair, by that time, reached our respective waistlines.

Breakaway Em and me bed

Until that point, Emily and I had kept my diagnosis private, among family and close friends. During the cruise, we both made the difficult decision to go public.  As we read the thoughtful, encouraging messages from family and friends, we knew that we had made the right decision.

Travelling the high seas with Emily and our friends was a magical experience.  We bought passes to the Thermal Suite, a steamy, luxurious spa at the front of the 15th deck, with floor to ceiling glass on three sides. We dined and danced with our friends.  We soaked in outdoor Jacuzzis.

On the last day, Emily and I daydreamed about finding a place to hide before we docked, so we could stay on the ship forever. Solomon could sneak on when we docked.

Last day on the Breakaway

My dad, who has been calling me every day since my diagnosis, picked us up at the docks, and we spent the day in the city.

Emily and her Grandpa

The following day, I flew to California, ran the workshops and visited my brother and sister-in-law.  My family is super cool.  We are all a bit crazy, in a good way, and we always have fun together. When my dad, the iconic patriarch, gets everyone together, it’s like a circus, in a good way.  I am fortunate that everyone rallied around me when I was diagnosed.  They are my rocks.

The day after I returned from California, celebrity stylist and my dear friend, Steve Roy, cut Emily’s and my hair.  We raised over $2,000.

Before the cutSteve Roy and EmilyAfter the cut

Sporting a new bob, I met with Eitan the day before my first chemotherapy session.  He handed me a copy of a report from my full spine MRI. The scan was ordered because a bone scan indicated there may be a problem at T12, perhaps a fracture. The MRI showed no issue at T12, but an incidental finding: there was a 2.4 cm tumour compressing my spinal cord at C1.

“They say it’s critical,” he said, “but I don’t think it will be necessary to interrupt chemotherapy.  In any case, I’ll refer you to a neurosurgeon for a consult.”  It was booked for the day after I returned from Sweden.

A tumour on my spinal cord, just beneath my skull?  Seriously?

The following day, Emily and I packed for chemotherapy as though we were going to a picnic.  Sliced mango and papaya, dark chocolate, cards, music, an iPad to watch movies and, of course, Prosecco—anything we could think of to make the road a little smoother.

Our nurse couldn’t have been nicer.  She had to administer four tubes of medicine manually, which meant that once she inserted the needle and snaked it up my vein, she literally pushed the fluid into my vein, bit by bit, staring at my arm to make sure the medication didn’t leak into the surrounding tissue.  This took about an hour and a half.  The last medication was administered with a pump.

Emily and I were so busy talking to—and laughing with—the nurse that we never had time to watch a movie or play cards. Except for the insertion, it was all quite pleasant.  We walked to the car together afterwards, and she drove home. Solomon was still at school.  We went to a café, then headed for the park, where we sat and ruminated about the experience. I felt completely fine, though exhausted.  But so was Emily, and she didn’t have chemotherapy.

The next day, I still felt fine.  No nausea, no change in appetite.

The conference in Gothenburg, Sweden was transformative. The theme of the conference was Body and Mind, and one of the streams was psychoneuroimmunology: the impact of mental state on immune response.  During the opening plenary session, I felt as though the universe meant for me to be there and hear about this research.

My mental state can influence my immune system.  Brilliant!  I can get through this.  I will get through this.

Gothenburg was also about seeing friends I work with, from Toronto and internationally, who comforted me with stories of survival, hugs and, from one Norwegian colleague, healing teas. At the gala dinner, I danced for hours with health promoters and CEO’s of regional health authorities from Europe.  At 2:00 a.m., I had a nightcap on the roof of the tallest hotel in the city.

When I returned from Sweden, I met with neurosurgeon Michael Fehlings at Toronto Western Hospital.  He specializes in spinal cord tumours.  I had taken Emily with me to be my scribe and later regretted the decision.   The news was shocking to both of us.

The fellow who met with us first showed us the MRI on the computer monitor.

The tumour took up most of the space of my spinal canal.  My spinal cord was smashed against one side.

MyMeningioma

“It’s amazing that I have no symptoms,” I said.

The fellow replied, “With this kind of compression, it’s amazing you’re not in a wheelchair.”

She examined me before Michael Fehlings came into the room. After a second examination, Michael asked about my treatment plan, which at that time was a year.  Michael didn’t want to wait that long to remove the tumour, which would eventually stop my heart from beating, and my ability to breathe.

He proposed the window between chemotherapy and my next surgery, to remove all of the lymph nodes under my left arm.

“But if you have any symptoms, we’ll have to interrupt chemotherapy.”  Emily and I looked at each other. “The first sign of numbness or tingling in your hands or feet, call me.”

After the appointment, stunned, Emily and I ended up at The Drake for brunch, with mimosas.

We agreed not to tell anyone, except my brother, Carl, a physician.  Not my parents, not Solomon, or any of my other siblings.  It was just too much bad news.

It wasn’t until two weeks after my first treatment, when my hair started falling like rain from my head, that we had proof that the chemotherapy was working.

My medical oncologist had warned me. My family physician had warned me. And Steve Roy.  My attempts to manifest keeping my hair through meditation had failed.

Steve cut my hair very short in his home.  It was an in-between stage, before it had to be shaved. Emily was there with me.

If anyone else had been giving me a pixie cut, I would have been crying like a baby.  But Steve was so compassionate and funny, telling us stories about the women he knows who have been through the same diagnosis and were still alive and well.  He made the road smoother.

Three days later, I had a shredding emergency, and between clients at Solo Bace, Steve Roy shaved my head as I cried like a baby. Steve’s colleague held my hand throughout, bless her.

There was no reconciling the woman in the mirror with my own perception of my self.  I pulled a white knit beanie I had at the ready over my head, feeling ashamed.

Just as I got out of the chair, Emily arrived by taxi. She saw my red and puffy eyes, my beanie. “Aw, mum!” she said, hugging me. “How about dinner in Chinatown?” In our family, the answer to “Can we go to Chinatown?” is always “yes.”

Plus, I figured that the chances of running into someone I knew at Swatow were very small.

As if I wasn’t traumatized enough by the baldness, a few days later, my left hand went numb.  I immediately assumed it was psychosomatic.  But the numbness didn’t go away.

Two days later, there was something wrong with my left foot.  It was numb, too.

The end of cleavage?

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Six months post-op

Six months post-op

My grandmother used to complain, regularly, as though it was a moral failing on my part, “You got nothing, just a pair of fried eggs!” A line that never failed to amuse when I repeated it to friends.  I still have a t-shirt with strategically-placed fried eggs that a friend painted for me.

That was before I had children.  My breasts (and ass) have puffed out since.  My dear friend, artist Harold Van Johnson, says I’m disproportionate. I’m thin with tits and a caboose, an hourglass figure I never expected in my youth.

I’ve enjoyed having a nice rack.  I like the attention.  I look good in clothes.  My tits have been painted, photographed and sculpted by artists.  I don’t think I’ve ever taken off my clothes without a reaction such as “Wow!” “Great tits!” or “Mamma-mia-bellissima-donna!” (all one word when uttered in an emotional state).

As I got older, I found the traditional underwire bra insufficient for my ageing torso.  I went to Victoria’s Secret and approached a young saleswoman: “I’m 42. Gravity is taking over.  I want my tits to be closer to heaven. If they can talk to god, even better.”

She laughed and told me to follow her.  She had just what I needed.

I entered the era of the push-up. Not the kind that adds an entire cup size–that’s just deceiving–but the molded cup with a little padding at the bottom, towards the outer edge, giving a significant oomph to the bosom.  Defying gravity.  Perfect.

And I rarely miss an opportunity to show them off.  I keep it conservative at work, but otherwise I’m in tight and/or low-cut tops and dresses.

My father car once complained, “Why is it that, whatever you’re wearing, I can see your bra?”

“My bras are expensive and beautiful.  I’m sharing the joy they bring me with the rest of the world.”

When offered the choice of a mastectomy or a lumpectomy, I didn’t have to think.  I wanted to preserve my left breast, knowing that it would look different than my right one.  Keeping my nipple was particularly important.

After the bandages came off, I was pleasantly surprised. Not bad! Yes, the lower left quadrant of my breast was missing a chunk of tissue, and my nipple pointed slightly laterally, but it was still a fine breast.

And to my great fortune, the padding in my bras from Victoria’s Secret (and Yamamay, an Italian chain) filled in precisely where my breast tissue had been removed.  In clothes, you can’t tell I’ve had surgery.

I recently hosted a party and wore a short, turtleneck dress.  After an hour or so I was roasting like a chicken.  I asked my daughter Emily, Should I change into something skimpier?

She responded, “You insisted on keeping your tits.  Now let’s see ’em!”

So all was jolly and fun until I started seeing a specialist in lymphatic drainage.  A result of my first breast surgery, I had developed lymphedema in my torso, specifically, in the area behind my left underarm. Lymphedema is a common side effect of breast surgery, and it can develop any time, soon after surgery or 20 years later.  It’s a lifetime risk, and it can be debilitating.

My specialist said I should be wearing a compression bra, and avoid underwire.

I am the most compliant patient on the planet, but there have been several moments when I’ve had to draw the line.  That is, I would rather die prematurely than change who I am and how I live my life.

The first time was at the Lymphedema Clinic at Princess Margaret Cancer Care.  As a staff member, I asked for a private session on Lymphedema Awareness.  It was a 45-minute slide presentation on all of the things I have to do (e.g., wear gloves to wash dishes, rub olive oil into my cuticles, slather lotion all over my body) or can’t do.

The clinician came to this slide with a drawing of a woman and a man in a hot tub, with a thick red diagonal slash across it.

“Avoid hot tubs and jacuzzis,” she said.  “Heat increases lymph fluid.”

I was quiet when she named all the other things I had no intention of doing (gloves, cuticles, lotion), but now I had to speak up.

“No jacuzzis?  I’m sorry.  Not only am I going to continue to enjoy hot tubs and jacuzzis, I will continue to seek out opportunities to enjoy them with a hot dude.” (Better yet, two hot dudes.)

couple-jacuzzi-spa

I had the same startled reaction with the compression bra.

(Important note: I rarely leave the house without looking as though I’m headed to a dinner party.  Make up, flashy outfit, cleavage.)

The specialist saw the fear on my face and gave it to me straight: “There is nothing sexy about compression bras, unfortunately. But Spanx makes some camisoles and tanks that work well.”  She also gave me a list of authorized compression garment fitters.

I went straight to the lingerie section of The Bay and purchased a couple of Spanx camisoles (which bind my breasts like Hilary Swank’s in Boys Don’t Cry) and a DKNY shape wear slip, knowing I would need to hire two men to get me into the garment.

I wore one of the Spanx camisoles that night, to attend the Ryan Driver Quintet’s CD launch, a collection of Emily’s father’s songs of heartbreak: The Stephen Parkinson Songbook.

It was a lovely event.  I saw a lot of people I hadn’t seen in a long time. However, my breasts were like two fried eggs. I felt self-conscious and anti-sexy.

The next shop I visited, the following Monday, was the compression garment fitter next to the hospital, .  It was a dreary lower level shop in the Ontario Power Generation building.  “Good morning,” I said to the two women at desks behind the counter. “I’m looking for a compression bra in black, low-cut, push up.”  They stared at me and said nothing.  “I’m kidding,” I said, even though I wasn’t. “But I do need a compression bra.”

One of the women gave me a couple to try on. I tried. It was not going to happen.  I will not go from 48 to 68 overnight. I can’t. 

I returned the items to the woman and thanked her.

If I was going to beat the lymphedema, it would have to be with my current collection of bras, which, as it happens, all have thick bands that kind-of, sort-of compress the area where I have fluid collected.  I also wear the Spanx camisoles if I’m not going out.

Lymphedema status report: After five weeks of working with two lymphedema specialists, and daily lymphedema self-massage, the lymphedema is definitely improving!

Yes, I have had breast surgery and still have cleavage.  Not all women who have or have had breast cancer are so lucky.

Links to information about lymphedema and treatment:

Complete Decongestive Therapy

Canadian Cancer Society

Spanx Camisoles and Tanks (for compression, choose Super-Duper or Ultra Slimming Level)

Best to wear a compression sleeve when exercising to reduce lymphedema risk.   You don’t have to settle for those pasty-looking beige numbers from the medical supply shop.  Check out Lymphedivas for striking, sexy, make-a-statement sleeves.  (If you are in Canada, use the Lymphedivas website to select your sleeves, and order from Winnipeg-based Accucare Canada to avoid duty, shipping and taxes.)

And if you want to have fun in a jacuzzi: Tierra del Sol

The Most Wonderful News Possible

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One very happy family!

One very happy family!

Monday June 23 was the best day ever.

While I continue to document my Acid Trip of Stage III breast cancer and spinal cord resection, I have remarkable news to share.

I picked up my lasted mammogram results through a patient portal on Sunday and confirmed on Monday with my surgeon David McCready.

Comparison is made to prior study of January 27 2014. The patient status post lumpectomy on the left.

BILATERAL MAMMOGRAM
FINDINGS:
The breasts show scattered fibroglandular densities.
There are no dominant nodules or suspicious calcifications seen in either breast.
IMPRESSION: No evidence of malignancy. Routine follow-up as recommended.

Emily, Solomon and I cried tears of joy, over and over. Although the risk of recurrence is high, I’m in the clear for now!

We left the hospital with an indescribable sense of relief.

A Shout-Out to my Sponsors

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It’s fair to say that my father and step-mother saved my life.

My father and my step-mother, Sharon, have been rocks of strength since I was diagnosed. My father and I, and usually Sharon too, have spoken almost every day since my diagnosis.

Sharon is a wealth of good advice.  She told me right away how to manage: meditation, diet and exercise, a recipe I have followed religiously.

My father, it seems, meets a cancer survivor every day.  He is full of stories of remarkable recoveries, and he calls me when either of them find an article or see a broadcast on a promising remedy for breast cancer.

However, I sense my father may be even more affected by my diagnosis than my children.  Like every parent, his worst fear is that something may happen to one of his kids, and cancer happened to me.  A nasty case of it.

Six months into my treatment, my status changed from short-term (full salary) to long-term disability. My income dropped to 65% of my salary. After mortgage and utilities, I had less than $250 per week for food, transportation, clothing, prescriptions, insurance and sundry expenses for myself and my 16-year-old son.

I had lymphedema following breast surgery, and following spinal cord surgery, left-sided weakness and limited neck rotation.  I had exhausted my extended health insurance for lymphatic drainage and physiotherapy.

My son, Solomon, who is naturally but severely underweight, had turned into a human vacuum.  He wanted meat constantly.  My vegetarian, anti-cancer diet was neither sufficient nor appealing to him.

NB: A piece of advice to everyone in their 40’s: buy critical illness insurance immediately.

I had the term of my mortgage extended, which freed up all of $100 a month.  After a full day crunching numbers, I simply couldn’t apply lean theory to my income any further. I lay down on my bed and started crying.

My choices: I could sell the house and move to an apartment, although a two-bedroom apartment in Toronto, above ground, is about $2,500 plus utilities, higher than my mortgage.   I would be living on my equity, but Solomon would have plenty to eat, and I would get the therapy I needed.

The other option was to just put an end to this Acid Trip.

It made perfect sense, at the time: better to control the end of my life, and leave my children with start-up funds, than to let them watch me succumb to cancer.

It wasn’t the first time I considered suicide since my diagnosis.  I was terrified of my future, of being transformed by multiple surgeries and assaulted by toxic substances.

The decision made perfect sense before I spoke with my dad.

I didn’t mention my suicide ideation.

My father could tell I was in a low spot, and he asked what was wrong.  I simply told him that I could no longer afford groceries or the medical treatment I needed for my cervical spine and lymphedema.

My father didn’t hesitate, “What are you worried about money for?  Money shouldn’t be an issue. I’ll take care of you.  I’ve got your back.”

He called later to tell me he was going to send a credit card. “Don’t call and tell me what you’re buying or what things cost.  I don’t have time for that bullshit.”  Just like that.  Problem solved.  Amazing.

I tell people that my father is like Tony Soprano, but Jewish.  And older.  He’s the iconic patriarch of the Abraham Family Circus.

Again I cried, after I got off the phone with him–tears of relief this time.  And maybe I cried on the phone, too.

When the credit card arrived, Solomon and I headed straight to Whole Foods.

We bought a cornucopia of fresh fruit and vegetables, nuts, dairy products and alternatives, juices, meat, meat, and more meat, and a stockpile of healthy snacks for Solomon.  I bought vitamin supplements and cancer-preventing/cancer-fighting powders to add to smoothies.  (I know, it’s probably too late.)  The .cart was filled to the brim!

We bought over $400 worth of food.  Never in my life have I purchased so many groceries.

Solomon was so happy and grateful.

With a tremendous sense of relief, I returned to my physiotherapist and lymphedema specialists.  I also started working with integrative cancer care specialist who looks at all aspects of the patient, including diet and nutrition, mental health and social support. And I joined the gym at the Jewish Community Centre.

Months earlier, before the spinal cord surgery, my family physician had told me that I would need time to recover after my treatment was over.  She said I should take take a vacation, get out of Toronto.

I started planning my Recovery Tour long before my treatment finished. The thought of it kept me going. I got through six weeks of daily radiation without complaint because I knew I was getting the fuck out of town as soon as it was over.

I was planning to withdraw from my retirement savings for the Recovery Tour, but I believe Sharon convinced my dad to cover my expenses.  He left me a voice message. “I’m treating you to an all-expense paid vacation.  Just have a good time,” he said, “and get better.”

After an extended stint of unadulterated rest and relaxation with friends and family, far away from the hospital, I was indeed a happier, stronger person.  I felt as though I finally achieved comfort with uncertainty.

I’m no longer worried about how much time I have left on the planet.  How I choose spend my time is the more important question. Thanks to my diagnosis, and my psychotherapist, I am acutely aware of the preciousness of life.

We are, all of us, here for such a short time.

To Dad and Sharon, thank you. 

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Emotional Side Effects of Cancer 

The Psychosocial Impact of Cancer on Older versus Younger Patients and Their Families

Acid Trip Part 5: What makes cancer seem small?

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Spinal cord compression made cancer seem very small.

Once symptoms of spinal cord compression started, they progressed rapidly.  Each day or two, another part of one of my limbs went numb.  My right foot, my left forearm, my right lower leg.

I could feel pressure in these areas, but I felt as though I had a layer of latex over my skin, as though I was wearing a pair of rubber gloves, or a wet suit.  Climbing a flight of stairs, something I normally do effortlessly, my legs had become heavy. I was breathless.

I emailed my surgeon’s administrative assistant assistant a couple of times, left several messages, but received no response.

My right thigh held out the longest. I remember cycling back home from Kensington Market and thinking to myself, “at least I have sensation in my right thigh.”  But by the time I got home, it too was numb with peripheral neuropathy.

Nevertheless, I continued to exercise five or six days a week. My daughter, Emily, and I were gym buddies.  We did cardiovascular work, then abs, gluts, and arms.  Emily had a habit of increasing the number of reps on a weekly basis.  “If it doesn’t hurt, we’re not working hard enough,” she said. I couldn’t argue.

Occasionally, I jogged.  June 16th was the last run, I realized when I made it home.  My legs were like noodles. Even taking small steps, I could feel a lack of control as each foot landed. I just wasn’t connecting with the ground, and I was afraid of falling.

It was the eve of Critical Link 7, an international conference held every three years. This is the first CL conference in Toronto. Back in 2010, Glendon College was awarded to host the 2013 meeting. The remarkable Dr. Andrew Clifford, CL7 Conference Chair, was preparing to launch the first Masters of Conference Interpreting program in Toronto, and the spanking new Centre of Excellence, an architectural dream of a conference centre, was under construction.

I am on the Board of Directors of Critical Link International, an organization dedicated to the advancement of community interpretation (aka public service interpretation) around the world, promoting and ensuring access to public services for immigrants, refugees and Deaf consumers through professional interpreters.

I was also on the Local Organizing Committee. I had to come out of the C closet to the Board and to the Committee immediately after my diagnosis. My friends and colleagues on the Committee took over my responsibilities, full of compassion and support.

I participated in CL7 as I was able, and when I wasn’t, I slept on couches in the faculty lounge (vacant before and after the lunch hour) or in Andrew’s office.

From left to right: Dr. Andrew Clifford, Bonnie Heath, me (bald), Latha Sukumar, Campbell McDermid, Kiran Malli, Jiri Adler, Angela Sasso, Dr. Marco Fiola, Jane Langes

From left to right: Dr. Andrew Clifford, Bonnie Heath, me (bald), Latha Sukumar, Campbell McDermid, Kiran Malli, Jiri Adler, Angela Sasso, Dr. Marco Fiola, Jane Langes

Only Jane Langes, then Treasurer of the Board, knew about the tumour on my spinal cord.  When the conference was over, I disclosed my tumour and my symptoms to the Canadian members of the Board. They are all dear friends, and I was relieved to tell them.

I was still unable to get an appointment in the Spinal Cord Clinic, in spite of my repeated expressions of concern as I rapidly lost sensation in all of my extremities.

I finally received a phone call from the nurse practitioner, who informed me that unless I was falling or dropping things, I didn’t need to see the surgeon.

“That wasn’t what Dr. Fehlings said,” I told her. “He said I should call as soon as I feel numbness or tingling in my hands or feet.” She told me not to worry.

I wasn’t worried. I was fucking terrified.

Soon after that conversation, I fell. Badly.

I landed on my left knee, right in front of my house. I was alone, bleeding, and it took me a few minutes to get up. I left another message with the administrative assistant.

I kept Debbie Honickman, my family doctor, informed of my changing condition. I had her mobile number and her personal email. She was on holiday when she called me. “If you can’t get an appointment with your neurosurgeon tomorrow morning,” she said, “go to Emergency.” This was a direct order.

On June 24, I presented in the Emergency department at Toronto Western Hospital, over two weeks since the onset of symptoms.  Emily brought me food, clothing and toiletries, and reading material.

I stayed overnight, mostly awake, waiting for an MRI that took place around 4:00 a.m.

Later that morning, I received an electronic birthday present: a slide show of my best friend, Jane, and her daughter, Julia, with an invitation to visit them in Winnipeg, airfare and all.

The sentiment, the generosity and the slide deck moved me to tears. However, from the stretcher in Emergency, with my numb limbs, I truly questioned whether I would be physically able to make it to Manitoba in the near future.

On June 25, my birthday, I got a pass to leave Emergency for an appointment with Eitan Amir, my medical oncologist, whom I admire and adore.  They put me in a cab to Princess Margaret Cancer Centre.

Solomon and Emily met me at Princess Margaret, with a set of clothes and some eye make-up.

I’m sure Shinaz, a wonderful nurse practitioner at the Breast Clinic, could see I was in rough shape. She took me into a consultation room and asked me how I was. I exploded in tears. When I could finally speak, I told her I’d reached a stage I’ve been trying to avoid since I was diagnosed: I look like a cancer patient.

By the time the appointment was over at 2:00 pm, I was wasted. I’d been in hospital 21 hours, and tomorrow was another chemo dance. Grand.

I called the Emergency Department, told them I was too tired to return, and asked for the neurosurgery fellow to call me at home.  I had an appointment booked with the fellow on the following day.  Whatever he had to tell me could wait.

Before the Emergency visit, the plan was to celebrate my birthday with our dear friends, James Summers and Harold Van Johnson, who are like uncles to my children.

All day I was up in the air about whether to cancel dinner.  My daughter convinced me it would feel good to get dressed up to and celebrate in style.  I deserved it, she said, after all I’d been through in the last 24 hours.

I was indeed surprised by a large group of my closest friends, including my staff from the hospital, in the private room upstairs at Bar Italia.  Surprised and beside myself with a buzz of warmth and love, I cried for the second time that day. After the reception, a smaller group dined together downstairs.  The event helped to push the Emergency visit back into the past.

When I met with the neurosurgery fellow in clinic on the following day, he handed me a consent to treatment form, dated the day before.  “We were going to get your consent when you returned to Emergency. You never came back.”

“I called,” I said and explained the circumstances.

He changed the dates on the form and initialed the changes, then passed it to me. I was to have surgery in less than two weeks. The procedure would take 4-5 hours, he said.  My surgeon, Michael Fehlings, and I had already discussed the proposed procedure and risks.

I signed without asking additional questions, but I asked the fellow to modify the document to make it explicit that Michael, and not a trainee, would remove the tumour. We both initialed the change.

Not removing the tumour would eventually result in paralysis from the neck down, and death.  The risks of the procedure, ironically, were exactly the same.

I told my parents. They called my siblings.

Then I called my attorney to update my will.  I gathered all of my financial and life insurance information.  My daughter was added to my safety deposit box account.

I needed my family. I asked my sister-in-law, Patty Abraham, a health professional (and marathon runner/cyclist), if she could come the week before the surgery.  She was able to get a week off from work on short notice. Just knowing that she would be coming lowered my blood pressure. We get on like a house on fire, and she’s a master at both caring for others and logistics. She’s also hilarious.

Coincidentally, both my older brother, Carl, and my father, Carl, had booked a visit to Toronto at the time of surgery, so we were well supported.

News of the spinal cord tumour and the upcoming neurosurgery spread across our community of love, and a flood of calls and emails reassured us that we were not going to experience this alone. Our friends wanted to help in any way they could.  Of course, many offered the gift of food.

My very generous friend, Harriet Eisenkraft, who was also president of our inclusive, egalitarian and beyond-liberal Jewish congregation, Shir Libeynu, volunteered to coordinate food scheduling and delivery.

Patty was remarkable. She took over as a friend/sister/project manager and step-mother.  She counselled all of us, fed us, got the house cleaned up and in order.  I had been trying to get my 16-year-old son to excavate the unused books and tchotchkes from his room for years—with Patty’s support and patience, the job was completed within an hour.  During the week, she prepared meals too large for us on purpose, so that the leftovers would be in the freezer when I returned from the hospital.  I was able to talk to her as I couldn’t talk to my kids or my parents. I don’t know what I would have done without her.

 Part 3 Photo 1 Patty Abraham and me (June 2014)

Surgery Eve

On surgery eve, I had the difficult discussion with my children.  If the surgery was not successful, I did not want heroic measures to be taken. No life support equipment. But my children have known this for years.

Emily said, “We know, Mom.  If you’re not you, you don’t want to live.”

It’s a lot to consider for a 23- and 16-year-old. In fact, I would think it’s terrifying.

On Surgery Eve, with Emily and Solomon

On Surgery Eve, with Emily and Solomon

I spoke with Patty as well, and my brother, Carl, an infectious disease specialist and drummer.  “If I have to be flown to Switzerland, it’s not my kids who are going to bring me. It’s you.”  They understood.

I made several copies of a list of people who needed a call as soon as I was out of surgery.  Emily and Patty promised they would take care of it.

Without anyone uttering it, I’m sure we were all thinking the same thing.