El camino se hace al andar (the road is made by walking)

On this beautiful morning of September 24, 2012, shortly before sunrise, Myrta began a new path.  After 68 years on her previous journey, she continues in peace and we'll see her around, on the road to Santiago.

Lately, Singing has been useful for me at night. The pain at night makes me feel a bit desperate. I don't want to be too much of a wimp, for I don't want to move to ever more powerful meds too quickly. And I would like to maintain a sense of awareness and understanding of what is going on. 

So, David indulges me, we pray, singing the simple chants that we've learned over the years. The other night "take me, take me as I am" was a wonderful, meaningful statement. I believe that David was not freaked out by it; he just sang with me, understanding what I needed to say. I am amazed by David's capacity to do this special and intimate work with me. 

I am grateful for the guidance and gifts of listening of my ministers. Their presence reminds me, time and again and again, that I am not alone.

We sing, "Take me, oh take me as I am. Summon out what I shall be. Set a seal upon my heart, and live in me".  This is where I am. I am not bítter or upset. I am surrendering my life, thankfully asking to be "dismissed" to another level of work.


The medications, and hopefully the radiation session last week will continue to reduce the pain, helping me to "summon out what I shall be".


 Prayerfully, we continue our way to Santiago, and we will see you on the way. Lots of good singing on the way to Santiago!

A hugging shawl ... What a novel idea!

My friend Katharine is a woman with amazing talents. Recently retired as a minister, she has continued to embrace her role as a spiritual care provider with enthusiasm and compassion. Two days ago, I became once again a beneficiary of her loving work.


My friend is a great knitter who has survived many a meeting with the help of her yarn and her needles. For some time now, Katharine has been active in the prayer shawl movements sponsored by several churches in Kitchener-Waterloo. These groups create knitted prayer shawls which are given to hospital patients, or nursing home residents, as symbolic reminders that they are not alone. The groups' activities are not limited to the technical work of knitting. Prayer and a spiritual component is also involved, and the knitters see themselves as both givers and receivers in this cycle of love and care.


Knowing that my back bones and ribs are very painful right now, Katharine rightly deduced that hugging would be extremely painful. And yet we all want to hug and to be hugged, as expressions of love and caring. My friend came up with the brilliant idea of a hugging shawl, a long and narrow shawl, knitted with the softest yarn, using the most generous and amazing array of colours! A lot of extra work has gone into the knitting, for she chose to use many many rows of coloured yarn.


The many colors that make up my hugging shawl symbolize a life full of diverse and rich experiences, challenges, and moments of joy and sorrow. For me the multitude of coloured yarns is symbolic of the rich spiritual experiences that I have been blessed by in this community. It is comforting, beyond my ability to express in any language, to know that there are so many people of faith, from so many different faith expressions, lifting me and my family in prayer, as we go thorough this challenge.


So, now, when it is time for a hug, or two, we can use my hugging shawl to wrap me in love and prayer and concern. Thank you, Katharine, for such a compassionate and loving gift!


An expression that is constantly on my lips is "God have mercy". I first learned it as a child, in church, but later I grew used to hearing my mother-in-law saying it. Mercy is not something that is necessarily earned by my efforts. To me, mercy is a gracious gift from my creator. I ask for it, I need it, I count on it, but I cannot ask for it by any measure. I cannot give God a shopping list. When I ask for mercy, I am leaving myself open to God's grace, in whatever measure. 


My mother's name was Clemencia, which means mercy in Spanish. And so my new, colourful, full-of-love hugging shawl has a name. Her name is Clemencia. And we will see you around, with Clemencia the hugging shawl, on the way to Santiago!

A chemo holiday is a great thing!

Many readers may know that I am taking oral chemo. It is nothing like the chemo treatments I had last year, but it is no picnic, nevertheless. I take two sets of pills every day for two weeks, then I have a one week holiday. Right now I am halfway through my third holiday, and it is wonderful -- no depressing thoughts, a lot more energy, a brighter outlook. My appetite continues to be abysmal, and I am steadily losing weight. Trying to eat whenever I get an urge, having anything that is in the least bit appetizing. Eggplant is nice. Lamb with spinach curry is good. Any other kind of meat just won't go down. In the past month I have had beautiful visits with both of my children, and grandchildren. I have loved being with them -- what a special family I have! No sugar coating means acknowledging that I have had pretty powerful pain to deal with, especially at night. A warm grain pillow helps me to feel better. Singing helps us to feel better. How will I ever repay my prince for singing with me? "Don't be afraid, my love is stronger, my love is stronger than your fear. Don't be afraid, my love is stronger, and I have promised, promised to be always near".

His name is Ezekiel!

My walking stick's name is Ezekiel. And I am hoping we shall be friends for a long time. Ezekiel was a man who walked with God during a time when the people of Israel were not in very good shape. Ezekiel had a vision, one day, of a great valley filled with dry bones. The way he tells the story, he felt that God was asking him if the bones could live and be vital again. Ezekiel responded that if God should so decree it, the bones would become vital and live again. His response was pretty much all that was needed for the bones to take on lively power and strength again, so that they became in his mind a great army. The point of his vision, Ezekiel tells us, is that we can be lively, despite the dryness of the bones and the hopelessness of the situation. Readers of these reflections of mine know that my cancer has metastasized to the bones. Pretty dry-bone state of affairs. But with God's help, and with the proper amount of medication, we will continue to be part of this great army of walkers, some healthy, some not so healthy, who walk in the direction of hope, and life everlasting. My walking stick tells me that his name is Ezekiel. Not "Zeke" - his name is Ezekiel, and he stands as part of a great army of supporters. And we will get there, by God, though the road be rocky, and the journey be scary, and though the pain should break through unexpectedly. And we will see you, with my friend Ezekiel, on the way to Santiago!

What do you mean "in the moment"?

Ah, that is such a good question! We human beings seem to want stability, we want to be able to predict such things as "how long will it last?" We want to be able to plan - if we go to the lake, how long is the trip going to take? And we wish desperately for a pill, a salve, a cream, something that will take the pain away for a predictable length of time. I have not yet discovered such a medication. I am part of a wonderful palliative care team. My doctors and nurses are able to support patients on a 24/7 basis. If I call them, a response comes back to me in less than 30 minutes. A nurse who specializes in pain management has been assigned to me, and it is very reassuring to know that she knows my case, is familiar with my situation, with the meds I take, and with how my tolerance is working at this time. A quick and compassionate response is a very important part of my healing journey. It is important, however, for me to realize that I am on a healing journey; I am not on a race to find a cure. So, as I meet the severe pain on my lower back, or on my hip, I am aware, that we are part of a work in progress, moving toward the relief of pain, yet aware that we may not make it go away totally and for ever. Being in the moment requires an open mind, an awareness that we will use different modes, that we will address the pain in different ways, and that a good moment will be as long as it can be. We will be grateful for it, and be open to how ever long it lasts. We will be glad in it - that is what being "in the moment" means. And we will see you, along the way to Santiago, one moment at a time.

How long is a good time?

Oh, wow, if I had to tell you how long a good moment lasts, what would I tell you? This is the way we are working nowadays. A good time is as long as a moment lasts. Ten minutes? Ten minutes! Five? OK! I am learning to live in the moment, and am learning not to expect one hour. There will come a time, we still hope, when we will have a longer, possibly more predictable, time. When we will be able to predict with more regularity how long a trip we can have, or whether we will be able to sit through a play. At the present time, we are practicing the art of living in the moment. Winnie the Pooh knows about living in the moment. So does Toby the dog. How are you Myrta? Well. How is the pain? At the moment, it is six out of ten, and will hopefully go away. For a while. And we will keep on walking, together, to Santiago. With the pain, and the meds, and lots of good answers. And hope, always hope.

My cane, walking stick, walking aid...

It is a collapsible, aluminium deal, not hugely expensive, but very strong. Not elegant. Not cute or colourful, but strong; a really solid companion and dance partner in this new dance of life. I bought a lot of stickers and now my friend is all covered with sea shell stickers. Hanging from a chain is my calling card - my latest calling card: "Myrta Rivera, Spiritual care provider and story teller."


Alas, yesterday was my first day with my companion. Have not given him a name yet, though I expect that he is aware of his name and purpose. He calls me "boss". What a nice fiction ... the fact is that I can't go very far without it!


I got to thinking, how many walking aids and companions do we have in our lives? How many agencies and community groups exist out there, to help us when we need a hand? Not glamorous, not, elegant, not very shiny, but always there, aware of their mission and purpose, often run and supported by volunteers. 


Tomorrow, I expect I shall be starting chemo again, if the blood work is right, for 2 more weeks.


On this day, on this day that the Creator has made, let us be glad and rejoice in all our walking companions. And, we'll see you around, walking with purpose still, on the way to Santiago.

The second time around

Is love really sweeter the second time around? Certainly chemo is not sweeter. Oral chemo, intended to reduce pain, strengthen my bones, who knows? It may even put hair on someone's chest! So far I have no indications of this last item -- relax, folks, only kidding.


It has been a while since I wrote. Won't sugar coat it. Silence means either that I am totally zombied-out, or that the neuropathy in my fingers is making it difficult to type. I should get one of those programs where you just dictate! Sometimes my fingers feel like they are all thumbs, and it is difficult to choose between letter keys as I type.


So, how are you, Myrta? The physical difficulties made it easy  to not write, stay silent for a while and observe, feel how I am really feeling, examine what is happening. So many friends have honoured me by looking up the blog, and noticing that I have not written for a while. Thank you for checking in, and letting me know what you think. Thank you for your encouraging messages and your ongoing prayers and care.


When you are told, as I have been, that the goal will be to reduce pain, a little message pops up on one's screen: "Hold it, boss, what are they saying? Just pain control, what's the deal here?" You try to concentrate on what you are being told, but the inner message keeps popping up. What is the meaning of this, really?


Anticipatory grief. There is a phrase for you. Talk about hair on your chest! And what about "life review"? That is another one. How do you process stuff, the memories, experiences,and (yes, even) the fears of years? And what about narrative therapy? And short term brief counselling, and scaling? On a scale of one to ten, how are you feeling? Have you ever felt this way before? What helped you to get out? Where on the scale would you like to be? What do you need to get there?


A wonderful doctor friend asked me an amazing question today: if your loved ones falter about the fact that you don't seem to be fighting as much as they would expect, will they see your attitude as resignation, or will they grow to see it as courage? Where on the scale would I like to be? Hmm.


I am taking both long-lasting pain relief, and medication for the time when the pain breaks through the barrier.  Every 2 weeks I have a break from the oral chemo which I take daily. I am on the "OFF" week now, and it has been wonderful. Tonight we are going to Swiss Chalet for supper. Next week I will not wish to eat a thing, and it will be difficult to persuade my poor body to swallow. Ah well, tonight, this moment, I am well.


That is all for now, and remind me to write you about my walking cane! 

English is not my mother language ...

One year after my chemo started, here I sit again, looking out my living room window at the same maple tree. That chemo treatment has long been completed. We all thought that after radiation, I would return to my everyday life, wiser, but pretty much unchanged.


Here I sit again, a year later, looking out my living room window, seeing my gorgeous maple tree. Two days from today I will start the oral chemotherapy that I expect will follow me all the days of my life. It might make my life easier, the pain less severe, who knows? There will be other treatments - radiation, bone strengthening medications ... A couple of weeks ago, one of the doctors told me: "The goal will be to keep you comfortable, to maintain the pain under control." 


I can't remember which doctor said that to me. But I thought, "Oh, you are so smooth. This is how we speak English in South Western Ontario."  The goal is to keep me comfortable, not to cure; for there is no cure. And if you miss the phrase, and don't ask for confirmation of what you just heard, it may be quite a while until you finally get it. 


When you ask a question about timing, they tell you that "Statistics show the the majority of patients in similar circumstances are able to live two years with treatment." Or something like that. We don't have the final scans that will tell us where I fit in those statistics.


English is not my mother language. I did not learn it at my grandmother's knee. There are a lot of little subtle nuances to English - to any language, really, but of the languages that I know best, English takes the prize. Yet I long for clarity, and so I ask impertinent questions, out of season. Before it is time for questions, I often ask for clarification, for then it is easier for me to cope with the real meaning of what it being said. 


So, to get back to the goal of treatment, the goal is pain control. We surely are not there yet! I ache, and I hurt. My sweet Prince David and I have long and involved discussions, scholastic conversations, about when did I take the one pain pill, and whether is it time for another pill to deal with the breakthrough pain. We discuss with amazing seriousness whether the pain might be from the cancer or just arthritic pain that is getting worse, and should I not also take a Tylenol, then? 


Further, there is the issue of carefully documenting what I take, for I often forget three minutes after having taken something. Yes, I have a pill box, and soon we will be graduating to a mega-pill box! Some pills are to be taken as needed, so I do not want to mix those with the regularly prescribed ones. I would not like to take them just because they were there, rather than because I really needed them. 


Today is a beautiful, sunny, Victoria Day. The birds are having a field day, singing to their heart's content. There is a cardinal who deserves an Oscar for best song of the year, right out my bedroom door. The iris is in bloom in the front garden. In the back, the bridal wreath spirea went crazy last week, and has almost bloomed itself out! Next to it, the peonies are about to burst. at least two weeks before their normal habit in our garden. A lot of flowering bushes are working ahead of schedule, telling me: "Do not worry boss, we will keep on blooming; we know how to do this." 


My mother grew huge carnations and hydrangeas. She had grapefruit and mango trees in her back yard. My dad was a skillful farmer, cultivating vegetables for the whole neighbourhood until he died at 78. My grandmother grew her own coffee. I am happy that both my children enjoy coaxing beauty and nourishment out of the soil, and are passing their delight in gardening on to my grandchildren.


Those reading these words might be thinking that I seem to be concentrating on the minutiae of life rather than the ostentatious and pedantic topics of cancer treatment and recovery. You are damned right! I am concentrating on the details of living; I'm keeping my spirit alive and well fed and watered. I am concentrating on clearing up the clutter of my mental closets and bookshelves, and mind. When my nephew in Greece reads this, I want him to know all about his aunt Myrta, with all her wrinkles, rather than to learn about potions, and medicines, and conditions that he can find through Google!                                                


Recently a friend asked me how I stay calm. "I would have been freaking out!", she said.


First of all, I have discovered that when you have to do something, you pretty much do it: put one foot in front of the other and keep walking on. Pilgrims know that. When you are in the middle of a muddy field, you cannot quit - you may decide to quit later in the day, but at that moment you have to keep going and get out of the muddy field!


Sometimes cancer is discovered long before one has any discomfort or pain. In that case, the first signs of discomfort and illness come during the treatment for a disease that has not yet begun to make you sick! 


In my case, this second time, the pain came first, and then the chemo. The reason for this chemo treatment is different than the earlier time. You have to have a different mental framework. You cannot say, "be patient, consider the alternative. In sixteen weeks this will all be a memory, and you will get your life back." 


It is easy to feel discouraged or afraid, weary of the changes in one's daily life. " When can I have my life back, my energy back?" This time, it is different:  I have to say to myself, you have your life! This is your life. Maybe the flowers blooming out of season are trying to teach me something. Don't look for schedules, and get confused or upset because they came out of season! "To every thing there is a season, and a time to every purpose under heaven." 


I admit that there are moments, late at night when I am tempted to ask questions that have no answers.I have not yet asked "Why?" My questions have more to do with being a wife, a parent, a friend.


Once or twice I have had conversations, around 3 a.m., with a friend who did not make it. Ted was a wonderful friend, a carpenter and maker of beautiful kitchen and office furniture, . He was a good dancer, a loving father, a loyal friend, a man who lived his faith both at home and out on the road. His wife has been a good and loyal friend to me during this time. 


My conversations with Ted are rather one-sided, I admit, for he has been gone for more than 15 years.  I must imagine what he might say to me. So, I have not asked my friend to tell me anything. I have merely asked him to shine a light for me, as an example of courage, love and steadfastness of purpose. 


So far, it is working. And we will see you around, with the flowers, and Ted, and a great company of planetary pilgrims, on the way to Santiago!

Why do I feel so calm?

Why do I feel so calm?


The tears: quiet, hot tears flow from my eyes, and yet I feel calm for myself. I worry for people that are dear to me - how will this new knowledge affect them? 


How is this new knowledge affecting me? Am I angry? Well, no, not really.Well, maybe yes! Who is ever ready for this?


 I am thinking, however, something like this: "Sorry, but please don't tell me that I must look out for myself! Actually, no, I am not sorry, just don't tell me that I have to look out for myself. Just don't go there. Of course, I will look out for myself! But I also have a family, and while I have life and breath, I will look out for them, too." 


And don't tell me to stay positive!!! OK?? Of course I will stay positive. I find that this is something akin to laying a new burden on me if someone tells me to stay positive. I feel this way: "What if I don't stay positive, what if I should become afraid, or angry, or negative? Is the cancer going to become worse? Will I be punished because I did not stay positive?"


In the next few days I am going to concentrate on the wonderful question one of my friends asked: "What can I do that will help?" That was such an amazing question! For now I will say that I have found the love and caring that I feel from my friends to be the most helpful. And just think of it! Love and moral support is free to give!


I thank all my friends for that, and look forward to walking this new Camino. Do I welcome it? No. Did I wish for it? No. Did I ask for it? Hell, no! Shall I get under the bed, and hide? Sorry, but that is not on the agenda. This new Camino starts on North Drive, and it becons us to go out and follow. 


Later this week I will tell you about another Camino (of sorts) from Jerusalem to Emmaus. 


Today we met with amazing doctors at the Grand River Cancer Centre. They were competent and sensitive, mindful of my feelings. They explored with subtle vigilance, seeking to discover how we were taking the news. Would they have to give the information in several doses? Would we be open to hearing the whole story? I appreciated that; it enabled me to state my wish for clarity and openness. They gave me that.


We were blessed to have Dr. John Lockhead accompanying us. John is a talented friend, acquainted with pain, both physical and spiritual, and familiar with the care of the body and the spirit. His presence enabled us to have a third set of ears to hear the information and another mind to absorb and ask questions.  "Thank you" seems like such a paltry phrase, John!


I will understand better this coming Friday when I meet with Dr. De Carolis again. Until then, I have received a new prescription to keep the pain under control, and I am comforted by the fact that on a first examination she did not feel bumps or lumps on any glands or on my liver. There will be further tests to determine this for sure, but for now I will start on oral chemotherapy, and pain management. I also have to get a little dental issue taken care of, and then we're off with the chemo and/or radiation.


Will I lose my carefully grown hair, now that it looks wonderful again? Maybe not, but, you know what? Compared with seeing my grand kids, my children and their partners, and my husband, what's a little hair loss if it should come to that?


Off we go, May is the best month to start walking, so I will see you around, with my dilaudid and chemo, on the way to Santiago!

Here We Go Again!

Today is the 10th of May, 2012. Eight or nine months ago I had finished my Radiation therapy, the Chemotherapy time was becoming a memory, and I was getting ready for a lap around the Eastern Mediterranean with my husband David, and my sister and brother in law. My only concern then was staying out of direct sun, and not overdoing things, for I was a bit weak and tired easily.


As my treatment ended eight or nine months ago I felt no great euphoria, but I was generally content. I looked forward to going back to work at St. Mary's Hospital. Life was good: I had a wonderful husband, two really nice children and the smartest, most beautiful grandchildren that you ever could imagine.


In November I went back to work. My return to work made me feel not only that life was good; life was also normal! On the 24th of November we attended a fund-raising dinner in my honour, sponsored by the Kitchener Waterloo Multicultural Centre. What a magical evening it was! I loved seeing so many people, from different parts of my life, enjoying a fine meal and a good time together.


Christmas was a wonderful time. My son John and his partner came to visit from California. We went to Ioanna's house in Ottawa and enjoyed children's games, a beautiful church service, good meals and laughter, lots of laughter.. For the first time I went out in public without my wig -- my hair was finally long enough!


In January we went to the lake and experienced the winter landscapes so typical of the Addington Highlands region.  Life was indeed good. 


I started getting a pain in my ribs around the 9th of January. At first my doctor  thought it was reminiscent of shingles pain. Soon after that, however, it was clear that the pain was concentrated around several ribs. A bone scan and a bone density test showed nothing suspicious, other than three broken ribs.


In January there were pain killers, waiting for the ribs to heal, a fainting spell in the elevator at work, and all kinds of tests as a result of that. I continued to work, still feeling pain, but taking pain killers and waiting for the ribs to heal.


A trip to Cuba in February allowed us to enjoy the warmth and beauty of a beautiful country and of a fun time in the sun and sea. I was still in pain, but felt the ribs were healing. I kept taking my pain killers.


Easter at the lake with my daughter and her family and with David's sister Carolyn, her husband Gord and their son Malcolm. The holy day brought the enticing aromas of Easter cookies and bread, lamb, ham, and the glorious assurance of new life after the dead winter. Resurrection was all around us, and also the delightful news that Malcolm and Suzanne were expecting a child in the summer.


More pain killers, and more waiting for the ribs to heal. My doctor thought it was time for an x-ray. That showed that the ribs were healing. But why the pain? We discussed metastasis. "I will send you for another scan and if it is what we think it is, I will refer you to Grand River".


It was what we thought. The report states that the considerable change between the January and April scans is "consistent with metastasis".  This was followed by another referral to Grand River Cancer Centre. My appointment will be on the 15th of May. 


Last week was not an easy one. "Here we go again", I thought. I asked myself "How do I tell my son and my daughter?" It is easy to tell good news, but how do you communicate bad news on the phone? You cannot see facial expressions. Even the voice can play tricks through the phone lines. How to interpret silence at the other end? How do I keep my voice even and steady? How do I keep from chattering idle words? Will I be able to  sound balanced and calm, or will my voice break? 


Finally, I asked myself, "wouldn't my children prefer me to be honest?"  My children are grown up and have a trusting relationship with me. This last question helped me to focus on telling my children the truth, without minimizing the issue. I realized that they would want to know as soon as I know, rather than have me manipulating the truth and the timing. Our conversations last Saturday, while serious and sad, were inspiring, loving and encouraging. 


My husband reminds me that I never closed my blog last year. I know. Why didn't I? Was I weary of sounding too over confident? Was I waiting for the other boot to fall? Was it just another example of my inability to process goodbyes?


Today I am thinking, here we go again. How do I deal with metastasis? How do I stop doing the job I love? How? Was this supposed to happen? Why do I feel so sad? 


Then I ask myself, "Is it time to take to the road again?" Yes! Again we set off on the road to Santiago. We are not there yet. We walk, get tired, fall, get up, walk some more, take a break, get tired, make the wrong turn, come back again to the main road. The Road to Santiago continues to be a metaphor for life. Now more than ever, walking to Santiago is the best metaphor for this life we are living. Thank you David, for reminding me that I did not close my blog last fall! The way to Santiago continues, this time through the land of metastasis. I invite you to come with me, let us go, the road is waiting; the pilgrimage continues. 


... and we will see you again,  with the pain and a few broken and cracked ribs, with a few tears now and again, with joy and laughter and hope. It is a different kind of hope this time, but we will always be hopeful, always exultant, moving toward a shining goal. We will see you again, on the way to Santiago!

For Some Planetary Pilgrims, "Fighting Cancer" is not an Appropriate Metaphor

Some time ago, I wrote about my understanding of spiritual care of persons who have been affected by cancer, either personally or as family members (June 25, 2011). One of my points had been that we often overuse the term "fighting cancer", or "staying positive". This overuse could create a perception that if the patient does not get better it must be because they did not fight hard enough, or because they "lost the battle".

Today's Globe and Mail, August 22, 2011 has published a relevant article, in reference to the death of Jack Layton, Leader of the New Democratic Party and the Leader of the Opposition in the Canadian Parliament.

I have found this article particularly meaningful and useful. It is certainly time to explore our understanding of cancer, and of persons who have cancer. Though many cancer patients see themselves as fighters in a battle, it may well be time for us to consider other metaphors. A look at way that Jack lived the last six months of his life, and a reading of his Lettter to Canadians, demonstrates that, really, he did not "lose" anything. In fact, Jack died of Cancer, and we have lost a great Canadian example, but his spirit soared as he encouraged us to choose love over anger, hope over fear, and optimism over despair,

In the spirit of respect for Jack's example, and in appreciation to the Globe and Mail, I would like to share the article in its entirety:

Jack Layton didn’t lose a fight: He died of cancer
CARLY WEEKS
From Tuesday's Globe and Mail , Published Monday, Aug. 22, 2011 4:56PM EDT
Last updated Tuesday, Aug. 23, 2011 8:20AM EDT

Did Jack Layton die from cancer because he didn’t fight the disease hard enough? Of course not.
Why, then, did so many headlines and social media messages spreading news of his passing Monday morning at age 61 announce that he had lost a battle with cancer?

Even Prime Minister Stephen Harper, in his statement about the opposition leader’s death, noted that Mr. Layton “gave his fight against cancer everything he had,” and that he “never backed down from any fight.”

It’s a common cliché, one many of us use when talking about a disease that is often feared and rarely understood.
But to those touched directly by cancer, equating the illness with a war against the enemy, fighting an adversary, or suffering in order to survive can diminish understanding of the challenges and complexities faced by patients and their families.

“The idea that he was waging a battle which he lost demeans him,” said Robert Buckman, a medical oncologist at Princess Margaret Hospital in Toronto. “I absolutely feel that he did not lose to an adversary.”

Many oncologists and cancer patients have been pushing in recent years for a change in the well-meant, but often misguided words and phrases that have become ingrained in the cancer lexicon.

The outpouring of emotion over Mr. Layton’s death provides an opportunity to ask whether it’s time to move beyond the militaristic metaphors and clichés.

A significant problem is that most of the common words and phrases we use to describe the experiences of people who have been diagnosed with cancer imply that personal will and self-control play a large part in determining who will live or die.

To say Mr. Layton lost his fight implies he had a say over his fate.

“He didn’t choose any of that any more than I could have chosen the colour of my eyes: It’s that arbitrary,” Dr. Buckman said. “It’s a much more mature and helpful comment to say this man, faced with a rotten hand of cards, as it were, really gave meaning to his life and to what he did in his life.”

London-based writer Mike Marqusee, who has discussed his experiences with multiple myeloma in several pieces in The Guardian, says cancer has little to do with battle. “The [emphasis] on cancer patients’ ‘bravery’ and ‘courage’ implies that if you can’t ‘conquer’ your cancer, there’s something wrong with you, some weakness or flaw,” Mr. Marqusee wrote in 2009. “If your cancer progresses rapidly, is it your fault? Does it reflect some failure of willpower?”

Similarly, saying someone who is now cancer-free is a “survivor” conveys that he or she is somehow better than the people who didn’t make it, said Peter Ellis, staff medical oncologist at the Juravinski Cancer Centre in Hamilton, Ont.

“It does set up a battle with a winner and a loser, and I think that some people certainly think that there would be better ways of talking about this,” said Dr. Ellis, who is also an associate professor in the department of oncology at McMaster University.

Instead of fixating on the idea of a cancer battle, Dr. Ellis and a growing number of experts in the field say, it is more important to focus on learning to live with cancer.

For those undergoing treatment, this can be much more empowering than the idea they can somehow control the ultimate outcome if they fight hard enough.

It is the attitude that gets Barb Rowe-Bennett through each day. The 64-year-old Toronto resident, who has had cancer off and on for nearly 20 years, is in the last stages of palliative care after her breast cancer metastasized, or spread, to her bones and lungs.The medication she is taking keeps her comfortable and enables her to leave the house, spend time with family and enjoy each day as it comes.

Ms. Rowe-Bennett doesn’t see herself as a “survivor” even though she has managed to outlast the cancer thus far; nor does she feel she has been cursed by bad luck because the disease is still with her.

“I just feel that cancer is an interference in your life, and you have a choice of making it good or bad,” she said. “You can bring yourself down, and it can be the worst of the worst, or you can say ‘I can carry on, I will deal with [it] on a daily basis.’ ”

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Thanks for reading the article. This is not to say that having cancer is not a devastating struggle; it is! But it is also something over which we do not have so much control. Winning and losing, in this context, can be quite irrelevant.  Much more important to explore how we can soar, rise above it, and value the example of life well lived. Listen to Jack's last words to us: "My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world."
  
On my part, I continue my pilgrimage. And we will see you around, exploring the use of language, sometimes fighting and struggling, but above all living this pilgrimage of ours, until we get to Santiago.

Planetary Pilgrims Are Mindful of Diverse Traditions

Many of my friends are Muslim. This month, Ramadan, is a special and challenging time for them, during which their world is turned upside down! Night turns into day, and mealtimes are reversed. During daylight hours our Muslim brothers and sisters neither eat nor drink, not do they indulge in other pleasures.


This is a good way to explore the life of the poor and the hungry, and to learn how much we take for granted. It is also done as celebration of the Revelation that the Prophet Muhammad received. One particular chapter from the Qur'an is appropriate to our own family celebrations today: Sura 93. It has always reminded me that God has often found us in need and has supplied more than we expected. "Therefore ... of the Bounty of your Lord be your discourse"!


Look it up, Google has many different interpretations of Sura 93. I am most partial to Pickthall, because it was the one I first saw, when I was a young girl.


Indeed, today I am thinking about the bounty of God and thanking God for the bounty of friends from every tradition who have been walking this journey with us. And we shall continue, walking and thanking, on the Way to Santiago.

This Planetary Pilgrim is Celebrating

Today I had what we all hope was my eighth and last chemotherapy session! This is a good reason to celebrate, and we are celebrating, albeit quietly.  We did not go out to eat, nor did I get picked up from the hospital in a limo by a chauffeur wearing a classy uniform. There were no fancy wines, no prime rib roast , no exotic cheese tray with fancy crackers, no Pavlova dessert followed by a wee bit of cognac on the terrace. Yet, we celebrated nonetheless; and who knows, tomorrow morning we might go to the City Cafe for a gourmet bagel and fair trade coffee!


We (David, Ioanna, Gracie and I) are processing the day and its meanings, at home, quietly. 


Gracie, age six, asked her mother how we get cancer. You know, there are ways of talking with young children about cancer. Her uncle Josh had leukemia and lived. Another close family member had breast cancer and lived. And now, her grandmother has finished chemo.. 


Two days ago Gracie came with us to Grand River Hospital, and saw the lab technician getting blood samples. It did not hurt. She was there when they sent the vials up to the main lab, zap!!! through the shoot.


Today Gracie met my nurse Debbie, who spoke with her briefly about having met both Gracie's mother and her uncle on earlier occasions. They talked about Gracie's trip to California last year, and her trip to Puerto Rico 2 weeks ago. 


All this conversation happened while Debbie, R.N. was setting up the injection site. After a brief while Gracie went to the waiting room, to do her work. She played a word spelling tile game with her mother. She created a thank you drawing for Debbie, R.N., and another one "for the whole hospital" as she told me. This work of art now hangs on the wall behind the nursing desk in the chemo suite.


Children are all different. They need frank and open answers, and these answers vary depending on the family and on their own sense of security. In our family, our children have been a part of the process from the beginning. However, children do not need to be exposed to every episode. They need simple, truthful, matter-of-fact, loving answers, and then children move on to their work, which is play. 


So, Gracie was not present when the R.N. had to keep struggling to set up the injection site. My veins have become very flat and challenged. It took six tries, and three nurses (two of them vein specialists) to finally get a connection. It was not fun, but I was proud of myself. It is a good thing that this was the last chemo session. The veins on my one available arm seem to have become compromised. Any future chemo might need other solutions.


So how do I feel? Quiet. Amazed. Full of wonder and awe. Above all, I feel grateful. Let me use the language of my forebears: we are told by St. Paul to "Rejoice in the Lord always, and again I say Rejoice." Well, I am rejoicing, again and again! 


Sure, days three to eight might get a bit nasty. Pain is likely to affect me, and dullness in my hands and legs may require medication that will make me feel like a zombie. My eyelashes might yet fall out.  Yet my family and I have gone through a rather brutal challenge and come out feeling triumphant and joyful. What more do we need to say? 


And we will surely see one another again, always rejoicing, on the way to Santiago.

Breast Cancer Screening - Public Information - MOHLTC

It is good to live in Ontario, where the Ministry of Health and Long Term Care recently extended the Breast Screening Service to serve more people.

Please consider doing something for yourself in this regard. I invite you to visit:

Breast Cancer Screening - Public Information - MOHLTC

Planetary Pilgrims Know When to Take a Little Time Off

It may be that the effect of chemo is cumulative. I have felt worse during this cycle. It has taken me longer to spring back, and the "spring" in my step is certainly not so bouncy! 


The numbness in my hands and feet has been noticeable. Although there has not been loss of function, I do find it difficult to type, and I am a bit wobbly on my feet, losing my balance from time to time.


The depression that I normally feel on days three to eight has not been so overwhelming. I would characterize it more as a loss of "time orientation". Even though I knew that the sensation of despair would end by day eight, I found it hard to tolerate the waiting. David has been great at seeing me through this time, and so have my children.


My appetite has been really bad. Even though I know intellectually that it is important to eat and drink regularly, I have found it hard to do. Food tastes different. Let's be frank: food tastes bad!
And water is either too salty or too sweet. Ioanna concocted a great drink for me that I have found quite good: a combination made of water, orange juice, lots of ice and a handful of blueberries. I discovered that her sangria also tastes pretty good, and so does clamato juice.


What has helped? Lots of phone calls and e-mail messages, going out for a meal even if I can't finish it, going to the cottage, reading Rumpole of the Bailey stories. And being lazy - letting other people do things for me, though this is harder than you think.


David had a birthday during this two-week cycle. We had two days of parties at the lake. It was quieter and more sedate than usual, not out of deference to age, but because I could not do much myself. David's sister Carolyn was a wonderful hostess, and my daughter Ioanna did a lot of the work. My thanks to them for keeping up the outrageous birthday traditions. 


Tomorrow I will have what we all hope will be the last chemo session. Can you hear the Alleluias? The doctor has reduced tomorrow's taxol dose by 15% because of the numbness in my legs and hands. Still, it will be close to a five-hour experience. My daughter Ioanna and grand daughter Gracie will be with me. I am ready. I have charged my mp3 player, and have my Kindle all charged up also. We shall survive it. 


To what shall I compare tomorrow's experience in my journey?  I will think this, and write again soon, if my fingers allow. In the meantime, let us sit here for a bit, and enjoy the view, while getting ready to continue the journey tomorrow. And we will see you around soon, on the way to Santiago!

Planetary Pilgrims can learn lessons everywhere

Yesterday I went to Vincenzo's (www.vincenzosonline.com). Our family has followed the Vincenzo's brand since the little store was called Italian Canadian Foods, on Bridgeport Rd. in Waterloo.
These days, my appetite has diminished, and there are few things that I enjoy. Nevertheless, I love going to Vincenzo's. I enjoy having a latte there, and I often find things to bring home to try to deceive myself into eating something.


Having cancer and receiving chemotherapy can sometimes take over your life and your entire imagination. I learned a wonderful lesson in reality yesterday: I fell at Vincenzo's. Out of the blue, my feet got tangled and I fell like a log, flat, hitting my face on the floor, my hat and glasses flying off onto the hard concrete floor, my knee stinging from a scrape.


David and many other people came to my help. Was I hurt? Was I sure? I was advised not to be so eager to walk away. No, I was not hurt, though my scrape is still stinging and my knee hurts a bit. Only my pride was hurt. 


My first thought as I fell hard onto the floor was "Oh, my God, how is this going to affect my condition?" As I got up and struggled to redeem my injured pride, I  felt grateful for the ordinary, common experience of tripping over my feet and falling. And recovering! I was grateful to recognize that having chemotherapy does not mean that I am a china doll, breakable and super fragile. I am not broken! I am an older lady, who tripped over her shoes and was not paying attention. It may also be that the medication I am taking for nerve pain (a side effect of the taxol being injected as part of my chemo treatments) made me less alert. After all, I am not allowed to drive when I take it -- perhaps I should not drive the grocery cart, either!!!


I also fell once on the way to Santiago, nearing the village of Rabanal. People came out to meet me, carried my backpack to the pilgrims' shelter, and gave me priority in the line-up. I was just an older lady who tripped over her boots, and did not look where she was going. 


I learned to take it easier yesterday. I am having chemo, I will have to live with this dreaded taxol for  two more treatments, I will have a month of radiation, I am tired, I do feel pain, my appetite is not good, things taste like excreta, but I am not a broken, fragile china doll. I am a planetary pilgrim, walking toward healing. And we will surely meet again, on the road to Santiago!

Psalms for Planetary Pilgrims

When I was a little girl of 6, up to age ten, I was very focused on being a minister. I used to hold services with my friends, who valued very much my ability to quote the scriptures. They could not understand how I could quote verses appropriate to whatever trouble we were facing.


It all started, perhaps, with my biological mother. Knowing she would die soon, she devised a way to teach me lessons that would last me  for a lifetime. The solution she found was to teach me passages of scripture that would not be written on paper but would be inscribed in my memory. Thus, by the time she died when I was five, I had a store of unforgettable quotations to keep me company during good times and bad.


I no longer quote scripture and hold services as I did when I was a child. However, scripture has remained in my soul as an ongoing commentary to my life, often serving as a running companion in difficult times. 


During the months since I was diagnosed with breast cancer, I have often reflected upon the old stories of determination, hope and survival that I learned from my dying mother. 


One example is a story about Jeremiah the prophet. When the Hebrew people were sent away from their land into exile, the prophet Jeremiah was instructed to buy a plot of land in Jerusalem. It was not exactly a good business proposition, but the lesson was that land would be bought and sold again despite the exile - the people would come back. And so it was that on the day Dr. Sharkey told me that I had breast cancer I left his office and went to the store to buy six bras. I needed that reassurance that I was not entirely alone and helpless with the devastating news. 


The practice of chemotherapy and radiation, where we are fighting an unseen invader, reminds me of some of the psalms where the psalmist is lying low, hiding from the enemies that are attacking him. There is fear in those psalms, even despair, but never a feeling that the psalmist is utterly alone. These are powerful messages reminding us that we are not alone.


Some psalms are strongly worded. Read Psalm 91. It will put hair on your chest, honestly!

 "Whoever dwells in the shelter of the most high will rest in the shadow of the Almighty.      You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday".

Even as a child, I remember "getting it"; understanding that these lessons did not mean that trouble would not come, but that I should not fear it. Trouble did exist, after all -- my mother did die when I was five, but she did not leave me alone.  


I can still hear my mother's calm, soft, voice teaching me: "In peace I will lay down, and sleep, for you alone ... will make me dwell in safety". 


These lessons are not magical potions. Trouble and shit still happen. They do not disappear by magic. But we do have options. We cannot control the attack, but we can control our reaction to it, and we can choose not to be alone.  I think, considering her own life-story, that that was what my mother wanted to teach me. At least that is what I have taken from her story and her gift to me. 


Thank you for walking with me today. We will see each other again, remembering and retelling the stories engraved upon our hearts, on the way to Santiago.

Planetary Pilgrims Don't Sugar Coat Their Story

When I was first diagnosed, I remember saying to David that I would like to leave a good witness. I wanted to share my story through this blog so my friends and family could read first-hand about how I feel, and about how the story of my journey unfolds.


It has been a good story so far, the story of a journey through breast cancer, and chemotherapy. Later in the story we will travel through the land of radiation as well.  I have received five treatments, and am getting ready for my sixth one. 


Taxol is the essential element in the second set of four chemo treatments. A side effect of Taxol has been joint and nerve pain. How much pain? "Enough" pain. Let us say that the past week has been as much fun as chewing aluminium foil. I hasten to add that the medications for joint and nerve pain have been quite effective, and I have been grateful for them However, they have their own side effects, making me feel like a zombie! 


This zombie-like existence is unsettling, and perplexing. It has also been depressing -- I have experienced a total absence of desire, something that is quite removed from my every day existence. I have had visits and calls from family and friends. I have gone to the cottage and enjoyed the lake. I have had visits from my grandchildren. Still, on the days when I was most affected by the side effects, the best description of my behaviour has been a dull, silent, blank, look. 


During that week, I would also extend the phrase "total absence of desire" to my appetite. Nothing tasted right, and I found there was no room to eat anything. Not only was I not interested in eating, I was not at all interested in cooking. In fact, I could not remember anything that I cook regularly. The very idea of making a meal seemed unusual and not appropriate. Other than spaghetti, I could not remember anything that I cook regularly. David very kindly assures me that I do cook regularly, making good and tasty meals. Let us hope these skills return.


Although I am feeling well today, Saturday, I am aware that these feelings might return after Wednesday, when I am scheduled to have the 6th chemo treatment. Ah well, we will survive. And I will cook again, lovely and delicious things, I am told!


Until then we continue to journey, through the land of silence and dullness, and we will see you again, on the way to Santiago.