Well Enough!

Most cancer survivors are familiar with the inevitable "How are you?" question from family and friends.  It is innocuous enough in most instances but can become challenging when it can't be answered with the obligatory "I'm Fine".

For the most part we have reduced "How are you?" down to a rather meaningless greeting.  It fits in very nicely with "Hi!" as in "Hi! How are you?".  Likewise, the response has mostly been reduced down to a meaningless "Fine", or perhaps the lengthier version "I'm doing good", whether or not we happen to be "fine" or "good" at all.

Ah... but for the cancer patient, and their circle of friends and family, this becomes a much richer exchange.  To begin with, the friend comes with a genuine curiosity, heartfelt care and concern. They earnestly want to know "how you are", and equally earnestly want to hear that "you are well".  Family and friends are our strongest hope bearers.  They want us to be well, and if they could will it, we would all be well.  There is no stronger healing power in the world than the love and prayers of family and friends!

Be that as it may, the problem arises on those, not infrequent, occasions when we are not feeling "fine", "well", or "good".  For myself, I wonder "How much do I say?"   My experience has been that people's eyes often begin to glaze over when I launch into a litany of minor medical problems, or they begin to squirm when I relate the nasty details of the latest disease progression or treatment regime. 

Those who know me and have followed my blog know that I have always been forthcoming and detailed about my condition, my treatments, and my options going forward.  But still... the greeting "How are you?"  challenges me.  How do I answer, honestly and succinctly?

I have finally found the response which now works best for me...  "I am well enough."   "Well enough" seems to sum it up for me at this particular stage of the journey.  I am certainly not as well as I would like to be.  I am not able to work in the job that I love.  Nor I am not able to travel to Florida to visit my folks and many friends there. I can't even take a lengthy roadtrip to visit friends in the North, the Okanagan, or the Kootenays. It is difficult to plan much of my life beyond a few months at a time. Each of these things, and many others, are a cause for disappointment and some sadness. Alas!

However...  I was well enough to attend Robyn's wedding in Edmonton and dance 'til the "wee hours". I am well enough to walk the forests and seawalls of Stanley Park with friends and colleagues.  I am well enough to enjoy lunch and a matinee movie with my daughters Kelly and Morgan.  I am well enough to anticipate with great joy the birth of Robyn's child next Spring.  I am well enough to enjoy the occasional night out at the symphony or a play.  I am well enough to explore the many different options for living well (enough) with this deadly disease. And I am well enough to enjoy each day and night, each moment, with my beloved wife and partner Pam.

And that brothers and sisters is  W E L L   E N O U G H!!

Be well enough... Rob, in Vancouver

Long-Term Disability

Recent changes in my medical situation have persuaded me to remain on "long-term" disability rather than return to work this Fall as initially hoped.  Increased pain in the sacrum, related neurological pain, and changes in my blood chemistry indicate that the cancer is still alive and well.  Rats!

Dr. Klimo has resumed treatment with Irinotecan in addition to the Erbitux in hopes that it will provide a measure of relief.  So far it seems to be helping on the pain front. Naseau, fatigue, and diarrhea are again, however, the order of the day.   At this stage of the game it is amazing how important pain relief can become.  There is nothing more mentally disabling than chronic pain, as many of you who live with it know.

I will have an opportunity to bring closure to my pastoral relationship with St. Stephen's, and my life as a minister, at a couple of services this Fall.  We are tentatively planning a farewell service for October 3rd.  The day before my birthday and the feast of St. Francis, which suits me very well!

After that we will be heading to Edmonton to celebrate Robyn's marriage to Brandon on 10-10-10.

Peace and blessings...  Rob

"The only disability in life is a bad attitude."
Scott Hamilton

"Living on the Edge"

For the past 6 years I've felt as though I have been living on the edge of death.  Or perhaps the edge of life, depending on how you look at it.  Either way, living with metastatic cancer is "living on the edge".  I tend not to share many of my thoughts about this dimension of the journey.  It is not the kind of thinking that people normally want to engage in.  But it is the kind of thinking that late-stage cancer survivors are drawn to.  At least occasionally.

I can't imagine any cancer survivor who hasn't delved a little into the "existential questions" of life and death.  For those of us with metastatic or recurrent cancers, these questions become more pressing.  To avoid them is to live in denial of our mortality.

Henri Nouwen offers up the following as food for thought...

"Is death something so terrible and absurd that we are better off not thinking or talking about it? Or... 
Is it possible to befriend our dying gradually and live open to it?  Trusting that we have nothing to fear.  
Is it possible to prepare for death with the same attentiveness that our parents had in preparing for our birth?"   
Henri Nouwen "Our Greatest Gift"

Beginning in July, I will have the opportunity to explore these and other questions in a new program I am facilitating at InspireHealth, Vancouver's integrated cancer care center. "Living on the Edge" will be a small support group for "late-stage" cancer survivors.  Themes explored will include: facing death; accepting our mortality; getting the most out of THIS life; doing what is life-giving; finding friends for the journey; engaging family and friends; and life after death, to name but a few.

So, over the next few months, I will be using this space to share some of my own personal reflections on this aspect of the cancer journey.  Please do not be alarmed or think that I am feeling any closer to the end of MY journey.  I am not! The truth is I have been living with this awareness of the "proximity of death" for most of the past 6 years. Much of what I'll be sharing here will come from what has been on my mind from time to time over the past several years, the "unpublished" pages of my journal.

If you're interested you can start by reading some of my previous posts on death and dying...  here.

Be well... Rob; in Vancouver

“There is no cure for birth and death,
save to enjoy the interval.”

George Santayana

Audacter et Strenue

Our Pollock’s came to Lachute, Quebec from Paisley, Renfrewshire in Scotland where they were weavers. They were part of a major immigration of Scots to Quebec in the early 1800’s. The Pollock name has taken on various forms in North America including Pogue and Polk. President James Polk, 11th US President, comes from the Pollock’s of Renfrewshire.

The name Pollock itself is derived from the lands of the parish of Pollock, in Renfrewshire, Scotland. The name is from the Gaelic “Pollag”, 'a little, pool, pit, or pond'.

The Pollock badge and coat of arms features the wild boar, passant (ie walking), pierced by an arrow or lance. The boar in heraldry typically means bravery and fierceness (fighting spirit), the boar “fights to the death”. I relate well to the arrow in the side of the boar as a symbol of “woundedness” which, in my case, refers to my many cancer scars... Ouch!!

The Pollock motto, Audacter et Strenue, is usually translated "boldly and strongly".
audacter, audaciter : boldly, proudly, fearlessly.
strenue, strenuus : brisk, active, vigorous/ turbulent, restive.

The characteristics of boldness (audaciousness) and strength take on new meaning for me as I dedicate myself to overcoming this dread disease. I love the word “audacious”. It names a radical, risky, unrestrained type of boldness that describes the type of “audacious hope” we need to have in the face of life-threatening circumstances.

“Audacious” has found its way into today’s business lexicon through the term BHAG. Pronounced BeeHAG, it’s an acronym for a Big, Hairy, Audacious Goal. It names a clear and bold vision for the future. I have a BHAG for my future and it has to do with being around to celebrate a 50 year anniversary with my beloved Pam!! (We just had our 28th). I look forward to each day in the meantime!

Here’s hoping… Robertus De Pollock;

“The very least you can do in your life
is to figure out what you hope for.
And the most you can do
is live inside that hope.”
Barbara Kingsolver

To Everything There is a Season

"To everything there is a season and a time for every matter under heaven…A time to be born and a time to die…” Ecclesiastes

 

In the course of my life as a minister I have spent much time in the presence of the dying and the bereaved. The names of those I have accompanied through these stages are written in my journals and their stories inspire my life and ministry. I believe that to walk with someone through the final stages of life is one of the most sacred experiences we can have.

From a spiritual perspective, "palliative", or "end-of-life", care is very much a service of “accompaniment”. The word accompaniment really names it well when you look at the Latin roots com-panis, "with bread". To accompany is to “break bread with”. It is to walk the journey with another as a companion for a particular and significant stage of life. When I remember those who have accompanied me in the difficult stages of my journey, I think of the following qualities that I value in them:

• availability and commitment;
• an ability to be a “non-anxious" presence;
• honesty, humility, and compassion;
• a capacity to both listen and reflect;
• a comfort level with silence;
• a sense of humor; and
• a certain wisdom that comes from experience.

It is also important to me to have a person who shares somewhat of my spiritual orientation. In that way we can use a common language of symbol, story and prayer.

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A particular challenge for the person living in the advanced stages of cancer is, “knowing when to let go”.  It seems to me that in the cancer journey there is a time to fight the "dragon" with all of the weapons we can muster. I've also seen that there can come a time when it's helpful to "let go", so that the final stage can be one of peace and dignity and not one of prolonged pain and suffering.

"Letting go" is not giving up. Death is not defeat or failure. It’s not about winning or losing, but rather about accepting the very imminent reality of our mortality. My experience has been that when the terminally ill reach the place of "letting go" a deep peace follows for the individual, their family, and their friends. Discerning the time of this transition is deeply personal and needs to be respected by caregivers and family alike.

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End-of-life care belongs to the family. It is another area of medicine which is being reclaimed through patient and family empowerment and education. Many hospitals and communities now have progressive Palliative Care programs that help our loved ones through the final stages of life with dignity and respect.

In Canada, Dr. David Kuhl has written an insightful book on palliative care. “What Dying People Want: Practical Wisdom for the End of Life” is an excellent account of David’s 15 year experience of palliative care in Vancouver. In it he addresses such issues as: Time and Anxiety; Bad News; Physical Pain; Life Review; Speaking the Truth; Self-Realization; and Transcendence.

In the US, Dr. Ira Byock has written and advocated extensively on end-of-life care. His website, http://www.dyingwell.org/, has numerous helpful resources and an excellent synopsis of the “Developmental Landmarks and Taskwork for the End of Life”. It is helpful reading if you, or a loved one, are facing end-of-life issues.

In peace... Rob; in Vancouver

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity". Gilda Radner

originally posted in July 2007

An Unlikely Pilgrim

In late August 2004, “Our Lady of the Lost and Found”, a novel by Diane Schoemperlen, was delivered to my hospital bed as a gift from a friend and fellow cancer survivor. “Our Lady” is a story of a middle-aged woman who takes Mary into her home as a house guest. Mary, weary from 2000 years of making appearances and healing the sick, is in need of rest and renewal and has "appeared" in this woman’s home with suitcase in hand. The story that unfolds is both a delightful tale of two women exchanging hospitality and becoming friends and a wonderful discovery of the most enduring healing icon in western history. Interspersed throughout the book are various accounts of Mary’s visitations and healings around the world including the story of Notre-Dame du Cap.

Notre-Dame du Cap is a shrine to the Blessed Virgin at Cap-De-La-Madeleine on the north shore of the St. Lawrence River.  Here, it is told, an ice bridge miraculously formed on the river to allow the transport of stones needed to build a new church. This ice bridge was called the “Rosary Bridge” by those who had prayed fervantly all winter for the freezing of the river. The parish priest of the day vowed to preserve the original chapel and have it dedicated to Mary. On the evening of the dedication, three witnesses saw the eyes of the statue of the Blessed Virgin open wide!

The original chapel, with the statue, has been preseved as a shrine and a beautiful basilica has been constructed on the site. Notre-Dame du Cap has become one of Canada’s leading pilgrimage sites having received millions of pilgrims including Pope John Paul II .

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In late September 2004 I had the opportunity to make a "pilgrimage" to Cap-De-La-Madeleine to visit the shrine of “Our Lady of the Cap”. Although an unlikely pilgrim, a protestant with no particular tradition of either pilgrimage or Mary, I truly felt called to make this journey.  I had recently undergone colon resection surgery, been diagnosed with metastatic colorectal cancer, and was scheduled for a liver resection the following week. My life was in upheaval, my future uncertain. I made a spur-of-moment trip to visit my folks in Ontario and took the side-trip to Cap-De-La-Madeleine with my Dad.

I found the visit to the shrine to be a peaceful and healing experience. I sat in silent prayer in both the old chapel and the basillica. I felt a profound sense of calm in both places. I lit candles to give thanks and to remember others and I walked prayerfully around the beautiful grounds and observed the Stations of the Cross.  I was filled with a sense of awe at the faith of people who made journeys to such sacred places. People yearning and searching for a place of peace where they might connect with the Holy and be renewed in body, mind, and spirit.

My friend Donald Grayston describes a "pilgrimage" as a journey to a place of  sacred or spiritual significance with the expectation of "transformation".  I like the intentionality around Don's notion of "expectation of transformation". 

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I cannot say that I experienced a miraculous cure on my visit to the shrine, I don’t think that is what I was looking for. But I did come away from Notre-Dame du Cap with a feeling of deep peace and hope, with a renewed sense of courage for what lay ahead, and with an assurance that all would be well.

5 years later, it is a pilgrimage that I can recall and remember.  As I remember, in the wonderful contemplative capacity of that word, I am filled again with the same sense of deep peace, hope, and courage that I experienced at that time.  And these are things that I need now, perhaps even more profoundly than I needed then!

Peace and blessings... Rob

"If we are spiritual beings on a human path rather than human beings who may be on a spiritual path... then life is not only a journey but a pilgrimage or quest as well. When we experience sacred moments it often is not so much a matter of outer geography but of finding soulful places within ourselves." Jean Shinoda

originally posted in June 2007

Gno-sis

gno-sis. from Grk gnsis, knowledge, from gignskein, to know;
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di-a-gno-sis n., pl. -ses The act or process of identifying or determining the nature and cause of a disease or injury through evaluation of patient history, examination, and review of laboratory data.
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pro-gno-sis n., pl. -ses A prediction of the probable course and outcome of a disease.

For many of us the cancer journey begins with a "diagnosis". On the basis of various signs and symptoms, and with the help of scans, tests, and biopsies, our doctors will seek “to know” what is going on. Life before a cancer diagnosis (BC) can range from “blissful ignorance” to “anxious worry” depending on the signs and symptoms we experience beforehand. For myself, I was blissfully ignorant. Apart from some periodic blood in my stool I was symptom free. The bliss of “not knowing” came crashing to an end on August 23, 2004 after a colonoscopy revealed a large “mass”. Surgery conducted that same evening confirmed cancer. Life after diagnosis (AD) would be different.

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Determining the “Stage” of cancer is part of the diagnosis. Staging has to do with “knowing” how far the cancer has gone. In cancers like colon cancer it works something like this…
Stage 1 Non-invasive Local Tumour
Stage 2 Locally Advanced Tumour
Stage 3 Lymph nodes affected
Stage 4 Metastatic (liver, lung, brain, bone, etc.)

Staging can be a long, drawn-out process, or it can happen literally overnight, such as in my situation. During my surgery the surgeon was able to feel suspicious lumps in my liver. Biopsy results confirmed his suspicion that the cancer had spread to the liver. Stage 4!!

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"Prognosis" is another type of “knowing” having to do with the future direction of the cancer. Actually, it is more like “guessing” than “knowing”. A simple prognosis is often based on the statistical averages observed in the progression of the disease over a large population. This turns out to be “less than helpful” since statistics, in and of themselves, are poor indicators of individual behaviour. The outcome of an illness has to do with many things related to the particulars of the cancer and the individual involved. Predictions are not easy to make and are rarely helpful. My surgeon gave me the statistics but declined to make a prognosis. Instead he referred me to another surgeon who could take care of the tumours in my liver. Now that was helpful!!

TTFN... Rob

“Accept the diagnosis. Defy the prognosis!”

originally posted June 2007

The Colonoscopy

As a colon cancer survivor I am well familiarized with "The Colonoscopy". This wonderful screening technology has saved many a butt, including mine!! The Colonoscopy is one of the recommended approaches to finding out what’s going on in your colon.

I have my colonoscopies in the “Minimally Invasive Surgical Suite” at my local hospital. “Minimally invasive” is a questionable term to describe the insertion of a six foot hose, complete with lights, camera, air and water jets, and surgical “snippers” into ones anus, up the rectum, and through the sigmoid, descending, transverse, and ascending colons, to map the inner regions of the bowels. Whew… Minimally invasive indeed!!

Actually, to be totally honest, the colonoscopy is a very simple, safe, and effective procedure. It’s done under a mild sedative which leaves you semi-conscious. I don’t remember my first colonoscopy at all and I have only vague recollections of seeing the viewing monitor during my second one. With a colonoscopy the doctor is able to visually inspect the lining of the colon, take samples of suspect tissue, and remove small polyps. It is really the best way to identify and analyse potential problems in the large intestine.

There’s lots of good information on the net about the colonoscopy. If you’re interested you could start with Wikipedia http://en.wikipedia.org/wiki/Colonoscopy . For an online tutorial on the colonoscopy check out Medline Plus at… http://www.nlm.nih.gov/medlineplus/tutorials/colonoscopy/htm/index.htm.

And for a humorous look... check out the awesome clip below!!

It’s not easy to talk about medical issues going on below the belt. We are unnaturally uncomfortable with the language that describes these “nether regions”. When we talk about our head we’re quite at ease with speaking of the eyes, ears, nose and throat. But when it comes to the lower GI tract we get a little tongue-tied. Get over it!! And get your colonoscopy… today!!

TTFN… Rob; in Vancouver

"Cancer of the colon and rectum often causes no symptoms, especially at first. Regular screening is the best way to prevent colorectal cancer."

originally posted in Jully 2007

We Are Not Alone

Living with cancer means living in the midst of a community of saints and angels who  share their stories, their wisdom, their pain, and their joy with us, both in person and through the medium of the written word. I’ve come to know these people as "heroes" although I’m sure none of them would see themselves as such. Some, Like Lance Armstrong, have enjoyed long-term survival and cure against incredible odds. Others, like Terry Fox, have walked the path of death with incredible grace and dignity. Collectively these saints and angels guide and accompany us on our journeys, wherever they should lead.

One such guide for me is Treya Killam Wilber. Treya Killam was diagnosed with cancer a few days after her marriage to philosopher and author Ken Wilber. They cancelled their honeymoon plans and spent the better part of the next 5 years on a journey of cancer care and healing before she eventually died in 1989. Their story is told with profound intimacy and tenderness in the book “Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber” .

Treya was a woman of deep wisdom with a great gift for journaling through which she has shared her insights with us.

Some excerpts that continue to inspre me…

“I’m certain I played a role in my becoming ill. A role that was mostly unconscious and unintentional. And I know that I play a large role, this one very conscious and intentional, in getting well and staying well!” TKW

“I want my will to live to be strong. I want to get as much time out of this as possible. And so I need to work at that with complete focus and dedication and clarity and concentration, and right effort. And yet, at the same time, be unattached to the results either way. Pain is not punishment, death is not failure, life is not reward.” TKW

Cancer would certainly be a part of my life from now on, but not simply in terms of constant check-ups and of constant awareness of the possibility of a recurrence. I was going to use it in as many ways as possible.

Philosophically... to get me to look at death more closely, to help me prepare to die when the time came, and to look at the meaning and purpose of my life.
Spiritually,... to rekindle my interest in finding and following a contemplative path.

Psychologically... to be kinder and more loving to myself and others and to express my anger more easily.

Materially... to eat mainly fresh whole foods and to exercise regularly. Mostly, to be gentle with myself.” TKW

In Treya's writing, "will to live" and "intentionality" are held in a gentle tension with a healthy sense of "detachment" which respects the physical limits and vulnerability of our common humanity. In the end Treya lives and dies with a quality which her husband Ken describes as "passionate equanimity", an elusive peace in the midst of profound paradox.

Peace and Blessings...
Rob
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"Life is not a matter of holding good cards, but rather, of playing a bad hand well!" Robert Louis Stevenson

originally posted in June 2007

A Cancer Journey

My previous work in this journal was done over two years ago and may not be familiar to newcomers here, or remembered by those who walked the way with me at that time.  From time-to-time I will be revisiting some of the posts from that earlier period, and refreshing, revising, and reposting them now.  They will be kind of like re-runs of favorite episodes!  Here's one that reflects on cancer as "journey"...

Of the various metaphors that are used to speak of the experience of cancer I tend to relate best to the image of “journey”. Life as journey, road trip, pilgrimage, or quest has been a larger theme in my life and cancer, as a piece of that journey, fits nicely.

My own life has really been a veritable odyssey with varied stages and way-points, from it’s beginning in Fayetteville, Arkansas; through a childhood in the Upper Peninsula of Michigan and adolescence in Calgary; with educational sojourns in Fredericton, NB and Castelgar, BC; finding lifelong love while on a cross Canada Christmas expedition; a 12 year tour of forestry work on Haida Gwai and throughout NW British Columbia; a passage by sea to the coastal Tsimshian village of Port Simpson and the beginning of a life of ministry; another stage in the beautiful northcoast town of Prince Rupert; and finally (so far) an urban adventure in the downtown heart of Vancouver.

Along the way there have been experiences as varied as the geography I’ve traversed, mountaintop highs, valley lows, ocean storms, prairie calms and everything in-between. I have found myself often in unfamiliar and uncharted territories and at times I’ve been lost. I have found companions on the way who have both guided and challenged me. I have been a son and a brother, a husband and a father, a forester and a minister. In ways that are both great and small I have both failed and succeeded in all of these roles. So it is with the journey of life.

I am particularly drawn to the language and theme of "pilgrimage" to speak of the experience of this journey.
pil·grim·age pílgrimij n. from L. peregrinatio
1. religious journey: a journey to a holy place, undertaken for religious reasons
2. trip to special place: a journey to a place with special significance

My friend Donald Grayston, himself an avid pilgrim, defines pilgrimage as  "a journey to a sacred place, in the expectation of transformation."

Cancer is most definitely NOT a path of ones choosing.  This is true of many of the classic quests in which the traveller is set upon a difficult road by way of circumstances beyond their choosing.  How the road is walked is, however, a matter of much choice.   In the pilgrimage of cancer the "sacred place" that we seek is a place of healing and well-being, a place of equanimity and peace.  And while the path may not be taken with the "expectation of transformation", such transformation often does take place, in ways that are perhaps subtle yet significant.

My experience of cancer has been a journey of varied terrain. Surgery and chemo are difficult roads. But there are grace-filled moments of rest and renewal along the way and companions to share the journey with. I have no idea where, when, or how this journey will end. We seldom know these things. In spite of all the recent set-backs, I do still have a vision of life beyond cancer and hopes for the future. But for the moment it's a matter of living through this stage, finding rest in the holy moments that are offered, and enjoying the company and the scenery as much as possible.

Safe travels… Rob; in Vancouver

“Be good, keep your feet dry,
your eyes open, your heart at peace
and your soul in the joy of Christ.”
Thomas Merton

Recurrence

One of the particularly nasty aspects of cancer is that it has a tendency to “recur”. I mean it sucks to get cancer to begin with, but to be hit with a recurrence after fighting it off once really sucks!! AND to be struck a third time... well, as many of you affirmed in your notes to me, "IT JUST ISN'T FAIR!!"

My original diagnosis was in August of 2004. I spent the rest of 2004 and the first half of 2005 undergoing surgery and chemo until I was finally found “All Clear”. Yee Haw!! It was a great moment to get CT Scans, PET Scans, and blood work results all back “negative”. I was celebrating what we know in cancer lingo as “No Evidence of Disease” or “NED”.

Then in the fall of 2006 I had another CT Scan. Initially it looked good and my surgeon and I were quite happy… then he got the radiologist’s report and I got the call to come back to his office (never a good sign!). The radiologist had seen things a little differently and a PET Scan was ordered to confirm if the “hypodensity” on the CT Scan was indeed malignant. Well it was… so, there you have it… a recurrence!!

Initially, the news of the recurrence was pretty devastating. But eventually, as hopeful treatment options began to emerge, a “we’ve been through this before, and we can go through it again” attitude began to take root. I had successful RFA (What is RFA?), another round of chemo, and once again emerged with "No Evidence of Disease"!

So... here we go again! This time a "local recurrence". Local recurrence is what we call a cancer recurrence that takes place at the original location. In my case it seems that some residual cancer cells grew to become a malignant tumour in the vicinity of the original site. This tumour then spread "posteriorly" to the sacrum. Ouch!

I met with the oncologists at the BC Cancer Agency today and they have recommended a 15 day course of radiation. I have decided to go with this and will probably begin within the next week. It is a "painless procedure" with "minimal side-effects" which should "significantly reduce" the amount of pain I am experiencing. (for which I will be most grateful!)



Living with the possibility of a recurrence is a challenge that all cancer survivors have to face in some way or another. Author, and cancer survivor, Vickie Girard has a great philosophy for living with that possibility. She says it is like planning for a picnic when the weather forecast includes a possibility of showers. Do you cancel the picnic and stay home, or do you go out and enjoy the day anyways, perhaps putting a tarp and raincoat in the trunk?

So… do we let the possibility of a recurrence diminish our lives, or do we “seize the day” and live life to the fullest? Cancer be damned!!

Carpe Diem… Rob; in Vancouver

“You may have to fight a battle more than once to win it.” Margaret Thatcher

1967 Summer of Love

I was just a 9 year old kid during the summer of 1967, too young to be a hippy. I spent the summer packing rocks, picking blueberries, and swatting blackflies in northern Quebec; enjoying Expo ’67 in Montreal; chilling at the cottage on the St. Lawrence River; and enjoying a bus-trip with my bro to see the Red Sox and visit grandparents in Boston. It was a pretty awesome summer for a 9 year old kid!! We’d spend much of our summer in those days hoofing around the Canadian shield with our geologist father. It made for great family summers and lots of adventures. During the rest of the year we lived in Houghton, in the beautiful Upper Peninsula of Michigan. That was pretty cool too!



Summer memories were filled with music from the car or truck radio. Here’s a few of the hits I remember from that wonderful Summer of Love.

• "I'm a Believer" - The Monkees
• "Snoopy vs. the Red Baron" - The Royal Guardsmen
• "Winchester Cathedral" - The New Vaudeville Band
• "Georgy Girl" - The Seekers
• “The Beat Goes On" - Sonny and Cher
• "Penny Lane" - The Beatles
• "There's a Kind of Hush" - Herman's Hermits
• “Groovin'" - The Young Rascals
• "Windy" - The Association
• "San Francisco" - Scott McKenzie
• "Can't Take My Eyes off of You" - Frankie Valli
• "Up, Up and Away" - The Fifth Dimension
• "Light My Fire" - The Doors
• "A Whiter Shade of Pale" - Procol Harum
• "White Rabbit" - Jefferson Airplane
• "All You Need Is Love" - The Beatles

It’s amazing how much music our mind has the capacity to remember!! Just seeing the titles of these songs gets the melodies rolling.

Still groovin'... Rob; in Vancouver

"Love, love, love... love, love, love... love, love, love." The Beatles

Down Days

Don’t let anybody kid you! There are lots of down days on this journey. Yesterday was a particularly tough chemo day. The nausea was bad and I spent a good chunk of the afternoon and evening chatting with Ralph on the great white telephone!

Surgery, radiation, chemo… they each take there toll. Recurrences and metastases contribute their own special horror. Add to this the stress of scans and blood tests, the emotional rollercoaster of fear, frustration, anger, and despair alternating with relief, joy, peace, and hope… well you get the picture. It’s tough on survivors, and just as tough on their loved ones.

Don’t get me wrong, I’m as positive as the next person when it comes to living with this beast. I think the right attitude and the “will to live” are important. But so is honesty and authenticity. Part of the reality of this disease is that it knocks the stuffing out of you!! Some days are really dark and tearful. We need mechanisms to release our sadness, fear, anger, and despair. It is not a sign of weakness, of losing, or of giving up. It is a sign that we are human, and an acknowledgement that letting go and release are part of the journey.

Music, meditation, and movies can be helpfully “cathartic”…
Catharsis : a Greek word meaning "purification" or "cleansing" derived from the ancient Greek kathairein "to purify, purge," and adjective katharos "pure or clean".

My colon cancer friends will appreciate that this word has also found its way into the medical lexicon as a bowel cleanser or purgative, cathartic. But I’m thinking of it more in terms of the emotional cleansing, or catharsis, that can happen when we are moved through compassion by tragedy, death, love, redemption, hope, or any of the other "really real" things in life.

TTFN… Rob; in Vancouver

“I cry a lot. My emotions are very close to my surface. I don't want to hold anything in so it festers and turns into pus - a pustule of emotion that explodes into a festering cesspool of depression.” Nicolas Cage

BC Nurses

To be diagnosed with cancer is to be launched into the midst of the health care system. Just coping with the system can be overwhelming! So much of what is happening is unfamiliar; so much is out of our control. For myself, I went from a colonoscopy, done in the “day surgery” suite, into the operating room in one day. So began my cancer journey, and so began my relationship with BC Nurses.

Between three major operations, four weeks in hospital, two extensive chemo programs, and numerous visits to various ambulatory care clinics, I’m sure I’ve been touched by the service of hundreds of nurses. Many I can’t remember, being either “out cold” or just too dopey!

What I do remember is the warm blanket wrapped around me when I was moved onto the surgery table in the freezing cold operating room. I remember the first person I saw in recovery after surgery, a nurse from my congregation, a familiar face and comforting presence. I remember the surgical recovery wards of Lion’s Gate and Vancouver General Hospitals and the teams of nurses that cared for me night and day. When I felt at my lowest they were there with help for pain, with firm reminders to do my coughing and breathing exercises (not fun!), and with support for the most basic of bodily functions (use your imagination!). I also remember the incredible respect that these nurses showed for my privacy and dignity in the midst of very vulnerable and embarrassing circumstances.

The Chemo Nurses are a special group. They’re on hand with advice for coping with Chemo side-effects. They make the jargon of “blood-work” understandable, administer the chemo medicine with skill and competence, and bring the human touch of caring and compassion to an environment which could too easily become cold and “clinical”.

Home-care nurses and nurses in the “ambulatory care clinics” round out the nursing care community for me. They would swing by the house to “de-access” my chemo port, or I’d swing by one of their clinics to have my port “flushed”, or to get an injection of Neupogen to boost my white blood cells. Again, they were available for consultation on side-effects and general health concerns. “Are you sleeping OK?”, “How about your digestive track? Things working OK?”. “Are you having any pain?”

In all of my experiences I’ve found BC Nurses to be caring and compassionate, well trained and competent, knowledgeable, and respectful of patient dignity, privacy and rights. A truly great group of people to have at the heart of our health care system.

So, to Leslie, Kim, Hazel, Myriam, Wendy, Chris, Judith, Erin, Shelly, Rufina, Karen, Aileen, Trevor, Judy, Natalie, Mary, Joyce, Shirley, Suki, Jenette, Deborah, Kathy, Marcus, Karen, Mia, Robin, Maria, Stephanie, Sandy, and the many whose names I regrettably can’t recall, Thank You. Thank you very much!

In Appreciation… Rob; in Vancouver

“Nurses - one of the few blessings of being ill.” Sara Moss-Wolfe

Greetings from the Beautiful West End!!

Well I've had "A Cancer Journal" up and running for about a month now and I just wanted to say thank you to all who have stopped by. I've put up about 30 posts and had over 2400 visitors to the site. Some are daily guests, others less frequent but still regular, and a few just stopped by for a peak.

I've found this to be a helpful exercise for myself. I've jounalled sporadically for the past 27 years and always found it to be an important discipline in terms of reflecting on life's journey. Many of the posts so far have come from different sections of my journal during my first diagnosis and more recently with my recurrence. I'm trying to strike a balance between technical posts, spritual reflections, humour, music, inspiration, and personal updates. Weekend posts will continue to be along the lines of "The Funny Pages" and "Sweet Hour of Prayer". My plan is to continue posting daily until I go back to work in September. After that I'll probably post a little less frequently.

Some hints for using this site... pretty simple stuff mostly...
OLDER POSTS: Older posts can be accessed from from the "Blog Archive" to the left. Post titles from the current month are visible. The post titles from previous months can be accessed from a "drop-down" menu by clicking the arrow indictating the month.

LABELS: Each post has a number of labels located at the bottom. Yesterday's post, "To Everything There is a Season" has the following labels: companionship, death, journey, mentors, and Palliative Care. If you click these labels you can pull up other posts with a similar theme. The journey label refers to posts that have to do with particular aspects of my own journey.

COMMENTS: I really value the comments that folks have made so far. It's a good way for you to share your own thoughts, to add something, or to just say Hi!. You do not have to be a member to make a comment you can simply post it under ANONYMOUS and sign your name in the body of the comment. If you have any suggestions for future posts or resources you would like me to share please let me know.

SHARING THIS SITE: If you find a post that you would like to pass on to someone just click the envelope icon at the bottom of the post. It may be something inspirational, informative, or funny that could be apprecitated by someone else at just the right time. Alternatively you could just paste the URL from the browser window into an e-mail and forward it that way.

Next week I'm planning a 5-part series "Living with Cancer" based on a framework of lessons for living from Sufi teacher Kabir Helminski. It will be a combination of reflections, quotes and clips on living deeply, finding peace, and sharing goodness in the midst of this cancer experience. Moday's theme is "Committing to Your Highest Possibility".

Have a truly great summer weekend... Rob

“Journal writing is a voyage to the interior” Christina Baldwin

Chemo Day

Well the Chemo holiday is over and I'm back to the clinic today to start round 4 of 6. I'm now over the hump in this short program and I have the end in sight. I had my blood-work done on Thursday and saw my Oncologist on Friday. Everything looks good. My platelets were a little low so he prescribed the steroid Prednisone to help boost them. I'm not sure how that works but we did it several years ago and it seemed to do the trick.

Here's a flowchart of my chemo program. You can click it to get a larger version. Please disregard the many spelling errors!!



I'll start the day at the clinic by giving a blood sample. The lab will do up a complete blood count and if it looks good I'll start the intravenous drugs. If my platelets are still low I may get a reduced dose of a couple of the drugs. Prior to the chemo starting I'll have two anti-nausea medications, Kytril (oral) and Decadron (IV). Then I'll get my Avastin over about 1/2 hour. Before they start the Irenotecan I'll get an injection of Atropine to prevent an early onset of diarrhea (we like to get home before that business starts!!). I'll carry on with the Xeloda (oral chemo drug) twice/day for the next two weeks. Then I'll have a week off and start over again.

Our Chemo Clinic is a bright comfortable facility. Patients can receive their drugs in recliner chairs or on hospital beds. Volunteers provide refreshments, social workers and dietitians are available for consultations, children and families visit, there is a resource library, dvd players, AND jigsaw puzzles!

The highlights of the Chemo Clinic are the other patients and the Nurses. I find the other patients I meet at the clinic to be a great source of inspiration. Here we all are plugged into our IV machines chatting away. People from all walks of life, every age, gender, and culture, bound together in a common journey of healing and life! The Chemo Nurses are some of the angels who meet us on this journey. They review our blood-work, ask about any side-effects, make suggestions for dealing with side-effects, administer our various drugs, and respond to our many questions. They are models of nursing competence and compassion!!

As things are currently scheduled, and barring any deferrals to accommodate side effects, I'll have this all wrapped up and be back in the pulpit by September!!

Living in hope... Rob

"The dream of wellness sustained me throughout the reality of the treatment." Vickie Girard

Celebrate Life

I’ve always enjoyed life’s celebrations, big and small. Birthdays, weddings, baptisms, Christmas, New Years, Easter, anniversaries and all of the many special days that mark our passage through time and life have always been meaningful to me. I think there is something inherently important about marking life’s passages and celebrating life’s significant events.

But these events have taken on increased significance for me since being diagnosed with cancer. I feel that my appreciation of life’s frailty and brevity has been deepened since being diagnosed. I no longer take any day, any year, or the future for granted. Each day is a gift, each moment a blessing. Each passage and event is worthy of being lived deeply.

This past weekend we celebrated one of life’s great moments with my daughters wedding. Family and friends gathered from Florida, Georgia, Cape Cod, Nova Scotia, New Brunswick, Ontario, Manitoba, Alberta, and throughout British Columbia for a wonderful long-weekend of celebration and feasting. It has been an absolute blast and I have enjoyed every tear and laughter filled moment. The day itself was grand, the service awesome, and the parade from the church to the reception with noise-makers and streamers a true delight! The reception, overlooking English Bay, was a wonderful feast with great fun and dance. The many events on either side of the wedding day itself rounded out a great Canada Day weekend of connecting and celebrating. Through it all we sang and danced, giving thanks for the gifts of family, friends, and the special love that brings two people together, body, mind, and soul.

I am so grateful to have been able to share my daughter’s wedding day with her. An extra week off chemo meant that I had good energy and could handle the long days. It’s been truly great to have this respite of celebration in the otherwise day-to-day regimen and tedium of chemo.

Several years ago, shortly after being diagnosed, I was visited by a wise and gifted colleague. As I shared with her my struggles around adjusting to life with cancer I asked, not really expecting an answer, “How do I live now?” My friend reflected for a moment and said simply and gently… “I think you have to do what’s life-giving.” Her words have been with me since that day, along with the questions from time-to-time, “Is this life-giving?” or “What is Life –giving in this moment?” or "How can I let this be life-giving?" Ultimately we have to discern what is “life-giving” for ourselves and choose the path that is sustaining in the midst of whatever we are going through.

Working with my daughter as she has planned her wedding, and sharing in this past weekend as we celebrated it, has definitely been LIFE-GIVING for me. As I said in my welcome to the guests at the dinner… “It’s times like this we can say… IT’S DAMN GOOD TO BE ALIVE!!”

Still Celebrating in Vancouver… Rob;

“Life is short, and we do not have much time to gladden the hearts of those who travel the way with us. So let us be swift to love, and make haste to show kindness.” Henri Amiel

What is RFA?

When I tell people I had RFA to treat a metastatic tumour in my liver they invariably ask... “What the H--- is RFA?” When I tell them that it is "Radio Frequency Ablation" they nod politely. When I try to explain by saying… “an alternating current is sent though electrodes inserted into the tumour resulting in coagulative necrosis of the malignant tissue” their eyes glaze over and they wish they could change the subject.

But RFA is just too cool not to talk about! It is one of those great new techniques that is changing how we approach small tumours in the liver and other locations. So here, in a nutshell, is a concise description of RFA. (with help from Medicinenet.com)

First let’s unpack the term.

Ablation: “Removal or excision. Ablation is usually carried out surgically. For example, surgical removal of the thyroid gland (a total thyroidectomy) is ablation of the thyroid. The word ablation comes from the Latin ablatum meaning to carry away.” Medicinenet.com

The geologists among us will of course recognize "ablation" as also referring to the erosional processes by which a glacier is reduced, thus yielding… “ablation till”. Fascinating as this is, I digress…

Radiofrequency ablation: “The use of electrodes to generate heat and destroy abnormal tissue. In radiofrequency ablation (RFA), heat is generated locally by a high frequency, alternating current that flows from the electrodes. A probe is inserted into the center of the tumor and the non-insulated electrodes, which are shaped like prongs, are projected into the tumor. The local heat that is generated melts the tissue (coagulative necrosis) that is adjacent to the probe. This results in a 3 cm to 5.5 cm sphere of dead tissue per treatment session. The probe is left in place for about 10 to 15 minutes.” Medicinenet.com

One of the really great things about RFA is that it can often be administered "percutaneously", or through the skin, making it a “minimally invasive” procedure. In my case, because of the tumour location, RFA was administered within open surgery. Several deployments of the probe were needed to create a "zone of ablation" large enough to encompass the whole tumour and allow for clear margins. A follow-up CT taken a couple of months later showed that the "zone of ablation", or "sphere of dead tissue", did completely encompass the pre-existent tumour (whew!!). I’m now taking Chemo to clean up any microscopic metastases that may be in the area. I'll be having regular CT scans down the road to keep an eye on things.

Now when people ask "What is RFA?". I just say... "We burnt that little sucker right out of there!!"

Enjoy the solstice... Rob; "The Cancer Geek"

"What is not cured by the knife may be cured by fire." Hippocrates

Chemo Strikes!

Finally!!
A new way for me to get around town while I'm on Chemo!!

Chemotherapy is standard fare for many survivors. Any cancers that have spread, or are at risk of spreading, beyond the local site seem to be candidates for chemo. Just the very thought of chemo conjures up feelings of nausea and dread for many. Horror stories abound!! Many, but not all, of them true!

I'm currently in the midst of my second round of chemo treatment. My first round, in 2004/05, lasted for 6 months and included the intravenous infusion of 3 or 4 different drugs administered for 2 days every 2 weeks. My current regime includes the intravenous infusion of 2 drugs and a 2-week cycle of an oral chemo in tablet form, all followed by a week off. My current chemo program is to reduce the possibility of future recurrences.

I'm amazed at the incredible variety of chemo drugs that are being used to fight cancer. And there are new ones coming online all the time. One of the new drugs I am taking today wasn't even available 3 years ago. It is the job of the oncologist to pick from these various drugs and to plan, prescribe, and administer the chemo program. A good oncologist is vital to an effective medical team. I'm lucky to have one of the best!!

It's the side effects that get us!! And how!! Side effects can include nausea, vomiting, diarrhea, constipation, hairloss, mouth sores, hand and foot sores, anemia, low white blood count, and low platlet count. Side effects vary widely from patient to patient and drug to drug. There are very effective drugs to counter the various side effects and the chemo dose can be reduced if side effects get too bad. My side effects have been varied. I've lost my hair, nausea and diarrhea are pretty standard, and my white blood cells and platelets have both declined. I'm taking another drug (Neupogen) to boost the white blood cells. Overall, though it's not too bad. My appetite is good, I have many good days, and CANCER IS BEING BEATEN!!. YAH!!

I remember a young women at a cancer workshop reflecting on the chemo program ahead of her. "I've got this horrible disease but there is this medicine that can help me. It may have some nasty side-effects but it can help me to be well again. It is the medicine I need."

Have a great weekend!.... Rob

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"Yesterday I decided to go to the office. I got as far as the bedroom door. Chemo strikes." Peter Jennings