SNAKES AND LADDERS by Marilyn Herasymowych

By Marilyn

May

18

Blog Entry #48 by Marilyn Herasymowych

Relapse and recurrence, the most dreaded events after surviving a cancer diagnosis.  The thought of this happening floats in the background of my awareness, always ready to shoot to the surface and scare me to death.  My first scare was in the fall of 2010.  I started having drenching night sweats again, a symptom of lymphoma.  The subsequent CT scan in January 2011 showed nothing.  In March 2011, I had sharp and piercing bone pain in my right pelvis, so severe I couldn’t move.  I was sure the breast cancer had moved to my bones.  I was wrong.  The bone scan in April showed nothing.  Suddenly, I was in a game of Snakes and Ladders.  One minute I was sliding down a snake of fear and the next minute I was climbing up a ladder of hope.

Kirsten in a triathlon with a picture of Marilyn on her back

One of the problems with having a lymphoma diagnosis is that lymphoma is a disease of the immune system.  This means that it is more likely to get more than one cancer if you already have lymphoma. I needed to check my colon for colon cancer, but I couldn’t go under an anesthetic because I was still in the grip of the relentless side effects.  I was lucky that there was a new diagnostic method that didn’t require sedation.  It was a CT scan of the colon, and so I went for it.

July 22:  CT scan of colon for general screening purposes

July 26:  Appointment with my family doctor who tells me that my colon is clear and healthy, but the scan found multiple lesions throughout my spine.  She orders a bone scan to see if the cancer has now metastasized to my bones.

I was in shock.  I didn’t expect to hear that there was cancer in my spine.  I thought about the severe bone pain that I had experienced in March and wondered if that had anything to do with these lesions.

August 2:  Bone scan to determine if there is cancer activity on my bones

August 4:  Appointment with my family doctor who tells me that the bone scan shows no cancer cell activity, but the radiologist believes that something is going on in those lesions.  My family doctor thinks I should have a bone marrow biopsy. She refers me to my lymphoma oncologist who will do the procedure.

August 11:  Appointment with my family doctor.  I tell her that I have not heard anything from my lymphoma oncologist about the bone biopsy.  My family doctor calls to find out what is happening and then tells me what she has learned.  I have now been referred to my breast cancer oncologist, with a recommendation to put me on hormone therapy.

I was so scared.  I was also confused.  I felt like I was being bounced back and forth between the two oncologists.

August 18:  Appointment with my breast cancer oncologist.  She tells me that the lesions are not breast cancer, so they must be lymphoma.  She orders a chest X-ray and an abdominal ultrasound to find out if the cancer has spread elsewhere, and an MRI to find out what is going on in the lesions themselves.  She also sets up an appointment with my lymphoma oncologist for a bone marrow biopsy.

August 19:  Chest X-ray and abdominal ultrasound to determine whether or not the cancer has spread elsewhere.

August 22:  Appointment with my lymphoma oncologist to do the bone marrow biopsy.  He tells me that the X-ray and ultrasound are clear.  He also tells me that he thinks that the lesions are not due to the lymphoma, since I have no other lymphoma symptoms such as drenching night sweats, loss of weight, and pain.  I tell him that I have had drenching night sweats off and on and that I did have pain in March.  He doesn’t want to do the bone marrow biopsy because it is a very painful procedure, and he’s sure it won’t tell him anything.  He agrees to do the MRI.

I felt so alone, neither oncologist knew what they were dealing with.  I could sense confusion and the fact that I was being bounced back and forth confirmed it.  They didn’t know what was going on.  My lymphoma oncologist didn’t even believe it was cancer on my spine. Continued…

LIVING AN ANTI-CANCER LIFE by Marilyn Herasymowych

By Marilyn

May

11

Blog Entry #47 by Marilyn Herasymowych

My back was against the wall.  I had two active and advanced cancers, and I was pretty sure I couldn’t do conventional treatment for either cancer when it came back.  The only option that I could see was to focus on increasing the time it took for either cancer to recur.  David Servan-Schreiber’s method, outlined in his book Anticancer:  A New Way of Life, became my starting place.  The method is based on the research of Dr. Dean Ornish, at the University of California.

Marilyn with dear friend Karen

Initially, Dr. Ornish studied 93 men with early stage prostate cancer, who had decided to refuse all treatment, including surgery. These men would continue to be under surveillance.  This “…meant measuring blood levels of PSA (prostate-specific-antigen), and antigen secreted by the tumour at regular intervals.  An increase in PSA would suggest that cancer cells were multiplying and the tumour growing (page 15).”  The men were split into two groups, one group continuing with surveillance, and the second group augmenting surveillance with taking action on Dr. Ornish’s advice about changes to lifestyle.  “Twelve months later, the results left no room for doubt (page 15).”

The first group’s SA levels had increased by an average of 6%, suggesting an increase in tumour activity.  The second group’s PSA levels decreased by an average of 4%, indicating a decrease in tumour activity.  The most surprising finding was that “… the more diligently these men had absorbed Dr. Ornish’s advice and applied it to their daily lives, the more active their blood was against cancer cells (page 15)!”  The term more active referred to special immune cells called natural killer (NK) cells.

Servan-Schreiber found that the way some people beat the odds was to mobilize their immune system – specifically mobilizing and increasing the activity of NK cells.  In his last book, Not the Last Goodbye, he attributes cancer survival to “maximizing our natural defenses by taking care of our bodies both physically and mentally … There’s no doubt that [Dr. Ornish’s] methods which are accessible to everyone reinforce the potential of our natural self-defense systems.  Numerous research studies have delivered conclusive proof (page 56).”

In his book Anticancer:  A New Way of Life, Servan-Schriber describes this method in detail.  Continued…

HELPLESS by Emily Tipton

By emilyt

May

2

Blog Entry #46 by Emily Tipton

Many times over the past two and a half years I have felt helpless.  There have been times in this journey when my role has been clear, when I have felt like there was something tangible I could do to help Marilyn.  I’ve tried writing, cooking, praying, working, meditating and even sending her intentional healing thoughts.  But the feeling of purpose never lasts long.  It really has been such a roller coaster and although I have been physically well, I have inside myself fluctuated from inspired to depressed, from empowered to helpless.

Emily with her son William visiting the penguins at the Calgary Zoo

One of the things Marilyn helped me to see about myself (and she continues to remind me of) is my tendency to help at all costs.  At my worst I am controlling and dominant, and at my best I listen, and try to help.  But I often need to help too much, and when I can neither help nor control, I sink down into a state of despair.  And when I feel like that, I hide from Marilyn.

Mostly, I don’t think that I am entitled to feel despair in this situation, given that I am not the one dealing physically or emotionally with the disease.  I am but a bystander, and I feel like I have no right to be anything but accepting, supportive and positive.  I wish that I could meet each new symptom, side effect or setback with resolve.  Instead, I am often speechless, frustrated and tired.

My default position when I feel like this is to close off.  This reaction goes beyond just carrying on with my daily life, unconscious of her situation. It is actually a concerted effort to become numb to the helpless feeling, to avoid the emotion.  I believe this is a pattern I have been repeating for much of my life.  I am not adept at expressing and releasing emotion.  I often fall back to the written word in these situations – writing letters, most never delivered, to those I love when I cannot face difficult conversations.

Continued…

THE TYRANNY OF POSITIVE THINKING by Marilyn Herasymowych

By Marilyn

Apr

5

Blog Entry #45 by Marilyn Herasymowych

The Support Group Meeting

I am at a cancer support meeting and a man introduces himself by saying it’s all about staying positive.  One woman who has lost her husband tells another woman, whose husband refuses to talk about his cancer, that she has to push her family to talk.  Another man at the same meeting tells the woman that her husband will die sooner if he keeps his head in the sand.  The facilitator agrees that talking and staying positive are key to increasing survival.  I get caught in the momentum, telling this woman that she needs to take care of herself.

The tyranny of positive thinking has caught us all, and for a moment we sit smugly in the rightness of our advice.  The woman nods her head, but looks like a deer caught in the headlights.  It’s hard to know if she actually agrees with us.  I suddenly realize that I don’t.

Marilyn with Henry's mother and Alicia

The Phone Call

A family member calls and asks how I am doing.  I tell her that I am not feeling well, but that this is normal.  She replies, “That’s good, stay positive, don’t think bad thoughts.”  I stop talking, and just listen to the chatter of mundane things that mean so much to her and so little to me.

The Visit

A friend visits and hugs me at the door.  She smiles, makes a sad sound, and moves into the living room.  I ask if she’d like coffee or tea, and put out an assortment of baking.  Each baked good a memory of distraction, of how I cope with the daily crush of fear and illness.

The Medical Appointment

An oncologist asks me if I know that how I feel could be all in my head, not real, but imagined.  I answer, yes, of course, but I still feel this way.  I tell her that I try to be positive, and to think differently, but nothing changes.  It’s so hard to be positive when I feel so lousy.

The Church

At church, it’s all about the science of mind, how what you think creates what you get.  “Banish all negativity, and you will be healed.”  The songs are uplifting, and, while I am there, I am lifted along with the rest of the congregation, into a sea of positivity.  Then, nausea hits, and like corporations during a market crash, positive thoughts scurry into the dark recesses of my mind.  Negative thoughts surface, and I am left with an intense fear that my cancer cells are dancing.

The Cancer Experience

I sit here with a rich experience of cancer and all that goes with it.  The richness lies in the profound darkness that has enveloped me, like bittersweet chocolate covering a liquid centre of fear and anxiety, uncertainty and confusion, contradiction and paradox.  The richness comes alive in wrenching grief and emotional chaos.  This is cancer for me, so little of it joyful, so much of it like stomach acid, breaking bonds of beliefs and assumptions, leaving only pieces that make no sense.  Cancer challenges me to put it all back together, but often leaves me at a loss of where to start. Continued…

EVERYTHING IS WAITING: A POEM by Marilyn Herasymowych

By Marilyn

Mar

24

Blog Entry #44 by Marilyn Herasymowych

Note:  This piece uses the phrase “Everything is waiting” from a David Whyte poem.

Marilyn with Reinekke and Frans

Everything is Waiting

Always in a hurry,
always rushing.
Answer the cell phone.
Text a message back.
Tweet.
Get a Starbucks.
Download from iTunes.
Upload to Facebook.

Oh yeah,
work,
gotta do that too.

Always in a hurry,
always rushing.
Take charge of life.
Leap into the fray.
Say yes
Even when thinking no.
Doing,
Doing,
Doing,
Just in case
life can’t be lived in stillness.
Trying this,
then
trying that.
Fitting everything in.
Multitasking
get it all done.
Believe it all requires
attention,
any kind of
attention,
even poor quality
attention.

Always in a hurry,
always rushing.
It’s such a scramble,
Getting it all done.
Never missing a beat.
Holding on,
letting go,
rushing,
rushing,
rushing,
as if being chased by a lion.
It’s worth the price.
It’s the only way.
It has to be,
it must be so,
and then it all stops

cold.

Always in a hurry,
always rushing.
A doctor says it’s cancer,
and the magnetic field shifts,
and the poles realign,
and the world turns upside down,
and you can’t see which way is up
or out
or what
or where
or how
or when
or why.

Always in a hurry,
always rushing.
But it’s all slow motion,
the doctor’s words,
the shock waves of disbelief,
the feeling of something wrong,
the diagnosis,
it must be wrong,
it can’t be right.
It really can’t be right,
there’s no time for it to be right,
it just can’t be right,

can it?

Always in a hurry,
always rushing.
Emotions rising,
then dissipating ,
then rising again
then dissipating again
and again
and again
and again.
These emotions,
they don’t know
what they’re supposed
to do.
It’s too much,
it’s too much,
it’s too much,
it really is too much.
Suddenly everything is waiting,
for everything else to happen.
Everything is waiting,
Waiting.
Waiting.
Waiting.
Even now,
When it’s supposed to be
over,
everything is still
waiting.

IN THREE DAYS by Marilyn Herasymowych

By Marilyn

Mar

15

Blog Entry #43 by Marilyn Herasymowych

In three days, it will be three years since hope began to die.  In the beginning, it was a shock being diagnosed with lymphoma – being diagnosed with cancer.  But I had hope, lots of it.  All I had to do was get through the chemo.  Then, everything would be alright.  Everything would be alright, and I would return to my life.  I had been told that my form of cancer wouldn’t kill me, and that the chemo had few side effects.  I wouldn’t even lose all of my hair.

Two Chicks!

I was lucky; my cancer didn’t kill me, but the chemo almost did.  By the fourth round, I started to think a lot about what I had been told – that my cancer wouldn’t kill me.  It wouldn’t kill me, but it was also incurable, which meant that it would be back, and this meant more treatment, more chemo.  How could I possibly handle more treatment?  My body would never submit again.  It fought every step I took towards the chemo room, every IV line inserted in my veins, and every pill I took.  It fought for its life.  My body understood what was going on, even if I didn’t, and it had had enough.  In the shadowed hallways of my subconscious, hope slipped away, one byte at a time, relentless in its disintegration.

For three weeks after last round of chemo, I once again lived in hope.  It was over.  I would now get better.  I would return to my life.  I would be okay again.  I couldn’t wait to enter the magic kingdom of recovery.  I felt like a kid waiting for Christmas.  Four weeks came and went, then five, then six, and then it was three months after my last chemo, and I was sicker than I had been while actually on chemo.  Something had gone terribly wrong.  Hope hibernated, waiting to be woken, but by Christmas I couldn’t wake it.  I couldn’t even find it – anywhere.  Hope had fled, and we celebrated Christmas without putting up the tree.

In a last ditch effort to regain hope, we spent the last day of the year coming to terms with what had happened, and what we could do.  We were determined to live life the best that we could.  We believed that we could find a way.  Hope had been rekindled.  Six days into the New Year, I had a biopsy of my right breast.  Six days later, I was diagnosed with breast cancer – a very different cancer than the one I already had.  This one could kill me.  Sixteen days later I had a lumpectomy.  Two weeks later, I found out that the cancer was bigger than they thought, and it was in my lymph nodes.  One week later I had a mastectomy.  Three months later, I refused all treatment.  My body was relieved.  I was terrified, and hope, oh yeah, hope, what the hell was all that about?  I didn’t bother looking for it.  I didn’t even know how to spell it.  It just didn’t matter anymore.

Today, three years after my first diagnosis, hope has returned, but it is a very different hope.  Today, I hope for little things:  to not feel pain or nausea, to be able to cook supper and bake a pie, to be able to laugh and see joy in the faces of others, to be able to read and to write, to be able to stay in contact and visit.  Each day my hopes dissolve, and each morning I wake up with them dancing in my head, as if they will be actualized.  Is this hope?  Is it enough?  Does it even matter?  It is what I have; it is all that I can hope for … today.

THE FACTORY: A POEM by Marilyn Herasymowych

By Marilyn

Mar

1

Blog Entry #42 by Marilyn Herasymowych

I have seen hell and it is white.

It is subtypes and stages,

grades and genetic markers.

It is diagnosis and prognosis,

treatments and maintenance.

It is side effects and meds,

apologies and regrets.

It is hospitals and doctors,

anesthesiologists and radiologists.

It is supplements and raw food,

spiritual cleansing and forgiving your mother.

It is lists and prescriptions,

therapies and positive thinking.

It is waiting rooms and lab tests,

CT scans and MRIs.

It is what we call healthcare,

and the emotional wasteland that is leftover.

I have seen hell and it is white.

I wrote this poem on June 8, 2010, six months after my diagnosis of breast cancer.  Emily had come to visit us from Nova Scotia, and both of us were taking a writing workshop from Shirley Serviss at the University of Alberta.  One evening, we started watching a BBC epic called North & South, adapted from a book by Elizabeth Gaskell.  The story takes place during the industrial revolution in England, and is about two people, Margaret from Southern England (London) and John from Northern England (Milton, a fictional factory town near Manchester).

Marilyn bundled up for a walk in the park

One of the first scenes in the five-hour epic is when Margaret finds herself inside a cotton spinning factory.  She is in wonder at what she sees and hears, hundreds of spinning machines moving back and forth, as she walks through hollow people working at each machine, and children scurrying to capture cotton fluff that gathers under the machines.  The air is filled with the fluff of cotton travelling on air currents, and it looks like it is snowing.  It is absolutely beautiful to see, beautiful even though the people laboring in its midst are ragged and exhausted.  At one point in the movie, Margaret is in despair, and she is writing to her sister in London.  She writes, “I wish I could tell you Edith, how lonely I am, how cold and harsh it is here.  Everywhere there is conflict and unkindness.  I think God has forsaken this place.  I believe I’ve seen hell.  It’s white, it’s snow white.”

This scene, and its words, got stuck in my brain, and the next day during the writing workshop, I wrote the poem above.  When Margaret is writing to her sister, she echoes how I felt in June 2010, about what I had been through.  Like Margaret, it was as if I had moved from London to Milton when I went from an energizing, creative, and what I thought was a healthy life to a traumatizing, chronic, and debilitating illness.  Like Margaret, I was lost in ‘the factory’, a place full of “conflict and unkindness”, both inside of me, and inside of the medical system itself.  Like Margaret, I felt that “God had forsaken this place”.  Margaret loses everything in Milton, and I could feel her loss in my own tattered and treatment-beaten life.  When Margaret finally leaves Milton to return to London, she is empty, filled with the void of loss.  I, too, was empty, and I, too, felt the void of loss, and with each day, I felt it closing in on me.  Like Margaret, there was nothing else left for me, nothing else to hold on to.  I too believed that I had seen hell, and it was white.

CAN YOU CATCH CANCER? by Marilyn Herasymowych

By Marilyn

Feb

14

Blog Entry #41 by Marilyn Herasymowych

I knew that a traumatic birth, unrelenting stress in my life, and emotional disconnection from my parents and other disturbances in my upbringing, could lead to my dual cancer diagnosis.  But I was still unsatisfied; the explanation seemed too thin.  I know a lot of people who have similar difficulties and don’t have cancer.  A very small part of my mind wondered if it was my fault somehow, that I did something that triggered the cancers.  A bigger part of my mind thought that there just had to be something more about how I got cancer in the first place, and perhaps even explain why I got two cancers.  I was healthier than most people I know who are my age.  I have always eaten a bit better than most, and exercised a bit more.  Why me and not someone else?

Marilyn with her two cats

One answer came while watching the CBC program called The Passionate Eye, featuring the documentary Catching Cancer, a production of the Australian Broadcasting Corporation (ABC).  The documentary started out by asking:

“Can you catch cancer?  It looks like that for many … cancers, it’s infections that start the whole process.  … In one workplace, 16 women were all diagnosed with breast cancer.  The odds of that occurring by chance are incredible.  A coincidence, or could a virus be the hidden trigger?”

These 16 women worked together at ABC, and many worked closely around one desk in particular.  When seven of these women were diagnosed with breast cancer within a three-year period, everyone got scared.  By the time it was over, 16 women had been diagnosed.  No environmental triggers were found; nothing could explain this cancer cluster.  Could it be that it was due to an infection by a virus, specifically a mouse virus called MMTV that in mice causes breast cancer?

The documentary features the hypothesis that if a virus can cause breast cancer in mice, it might be doing the same thing in humans.  We already know that cervical cancer is caused by being infected with a virus called HPV, which is why there is now a vaccine available for girls.  The idea is that if girls are vaccinated against the HPV virus, they will not get infected, thus making sure they won’t get cervical cancer.  The underlying premise is that without an initial infection, the chances of getting cancer are remote.  Many women are infected with HPV, and only 2% develop cervical cancer.  It seems that you need the virus to get cervical cancer, but you can be infected and never get cervical cancer.  As one researcher states in the documentary, “HPV is required but not sufficient.”  And the story of HPV doesn’t stop with cervical cancer.  Today, HPV is being implicated in other cancers, which may lead to a wider use of the vaccine.

To understand how a viral infection could be linked to cancer, you have to understand how cancer starts in the first place.  Most people think it is one reason that causes cancer.  For example, when a smoker gets lung cancer, it can be easily assumed that smoking caused that cancer.  Or if an obese person gets colon cancer, it can be easily assumed that poor eating habits caused that cancer.  But it’s far more complex than this.  There are many chain smokers who never develop lung cancer, and many obese people who do not get colon cancer.  It’s just not that simple, which is why cancer is so difficult to understand. Continued…

THE LONG TAIL OF THE CURVE: IN MEMORIAM by Marilyn Herasymowych

By marilynh

Jan

29

Blog Entry #40 by Marilyn Herasymowych

You might say that my body betrayed me – its first betrayal when it allowed me to become ill – its second betrayal when it rejected all forms of conventional cancer treatments.  You might also say that my cells betrayed me by becoming cancerous, and my immune system betrayed me because it failed to keep those cancer cells in check.  You might add to this that the medical system betrayed me because both cancers were discovered in their advanced stages, even though I attended yearly medicals, and had yearly mammograms.  You might even include that I betrayed my body, and my cells, by subjecting them to the toxicity created by leading a life of chronic and unrelenting stress.  But all of these perspectives don’t even come close to how I felt when I knew I had no options left in the realm of mainstream oncology.

Marilyn with friends Urbain and Chris

I had few illusions about my predicament.  I had two incurable, advanced, and dangerous cancers.  I remember trying to make light of my situation with my lymphoma oncologist by saying “At least I’m interesting.”   His reply left my mouth dry, “When it comes to cancer, Marilyn, it’s not good to be interesting.”  This was serious, and my chronic side effects had made things worse.  I had a poor quality of life, and it was getting harder to live this new life.  I needed to find a way through this wasteland of bad news and poor prognosis.  Both cancers would be back, that much was sure, and it was likely that they would be back within the next five years, if not sooner.  At a minimum, I needed to be emotionally ready when they came back, because it would be unlikely that I would be able to undergo conventional treatment again.

In the fall of 2009, I purchased a book that would help me to begin this journey:  Anticancer:  A New Way of Life by David Servan-Schreiber.  Servan-Schreiber, a clinical professor of psychiatry at the University of Pittsburgh School of Medicine, had been diagnosed with brain cancer at 31.  He had decided to write a book documenting his own journey to increase his survival.  He had been diagnosed with an incurable and aggressive form of brain cancer in 1992, and had been given six months to a year to live, with treatment.  If he refused treatment, he would have about six weeks.  In his book, he devotes an entire chapter to “Escaping Statistics”.  “Statistics are information, not condemnation.  The objective, when you have cancer and want to combat fatality, is to make sure you find yourself in the long tail of the curve.”  The long tail of the curve is part of a distribution bell curve that shows survival rates in terms of how long people will survive.  These curves often have a long tail that drift into a future of indeterminate length, showing the few who survive much longer than their prognosis. Continued…

THE COURAGE OF CONVICTION by Marilyn Herasymowych

By Marilyn

Jan

17

Blog Entry #39 by Marilyn Herasymowych

Marilyn with Deanna and Cheryl

People often tell me how much they are inspired by my courage.  After all, anyone facing a disease such as cancer, with its horrors of treatment, and relentless march to death, must have courage.  Even I, when looking from the outside in, see a courageous woman.  But, when looking from the inside out, from this place of skeleton remains, the courage is vacant and irrelevant.  For me, courage has little to do with the actual experience of cancer.  I am much more driven by forces that are outside of my control, and decisions occur because I believe this to be true.

In December 2009, I refused further maintenance treatment that would likely slow the recurrence of my lymphoma.  From the outside looking in, this was a courageous decision.  But, from the inside looking out, it was a decision that I made for one reason.  Simply, I couldn’t physiologically and psychologically handle anymore treatment.  Period!  Slowing down recurrence wasn’t even a bargaining chip.  My body and spirit were so broken, and my fears of more treatment so entrenched, that nothing could have swayed my refusal to continue with any treatment.  It had nothing to do with courage, and everything to do with survival, not of cancer but of its treatment.  My body had rejected more treatment, and it had made sure I understood that message clearly.

When I was diagnosed with advanced breast cancer, three weeks later, I knew that nothing had changed.  It was highly unlikely that I would be able to handle any treatment for this new cancer.  When my breast cancer oncologist suggested that chemo would not be helpful for my quality of life, or for reducing the risk of recurrence, it was easy to agree with her.  When I met with the radiation oncologist in mid May, I had already researched the efficacy of radiation for breast cancer, specifically for breast cancer that had metastasized.  According to Ralph Moss, in The Moss Report on Breast Cancer:

“If the axillary (armpit) nodes are involved with cancer, [as five of my nodes were,] there is a greater chance that the patient will have a recurrence of the disease.  Radiation therapy decreases the chance of a local recurrence significantly and dramatically – by as much as two thirds!  However, does such a decrease mean an increase in overall survival?  Sadly, the answer appears to be no.  An overview of all randomized trials that looked at this question found that there was no survival benefit to the use of radiotherapy after breast surgery.”

The radiation oncologist agreed with my research, and also noted that radiation would reduce my already poor quality of life.  Once again, it was an easy decision to refuse treatment. Continued…