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.’ ”
......................
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.
Tuesday, August 23, 2011
Thursday, August 11, 2011
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 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.
Wednesday, August 10, 2011
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.
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:
Tuesday, August 9, 2011
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!
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!
Thursday, July 21, 2011
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!
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!
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.
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.
Saturday, July 9, 2011
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.
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.
Thursday, June 30, 2011
This Planetary Pilgrim is Feeling Well Today. And celebrating!
David and I are going the the Stratford Festival this evening. Going to see Twelfth Night. This has been a good year for us attending the Festival. We have gone several times, but tonight is a special celebration night for us.
We are celebrating my graduation into the second series of Chemotherapy injections. Pilgrim friends, say hi to my new drug Taxol! The best thing is that I don't have to worry about nausea with this new concoction. The bad thing is that there may be pain as a side effect. However, I have my prescription ready, and gladly will follow instructions and keep resting and minding my body's requests. As Sara says, we will get through this.
We are also celebrating our new awareness that the cancer which had invaded me in the form of a lump in my left breast and then had moved on to 8 of ten lymph nodes, should be seen as GONE. My oncologist clarified this for us this week, reminding me that the chemo I am undergoing and the radiation treatments to come should be seen as "adjuvant" treatment.
So what is "adjuvant"? To quote the very popular Wikipedia:
Wow, can you imagine how we felt? We, David and I, are pretty educated people, yet we had not absorbed this either intellectually or emotionally. So, up to now, we have been living with cancer, rather than living as survivors of cancer.
This is a huge emotional difference, and it is worth celebrating with loud alleluias, and trips to Stratford. (To each her own!)
I feel well today. My baking hormones seem to have been awakened, and I made banana bread with some over ripe bananas. Also made olive and onion bread from an old Greek recipe. The kitchen smells wonderful, and sweet David keeps making short trips to the kitchen, in hopes of some samples...
Lots to do and lots of waiting and work on my health yet. The next three chemo sessions are going to take five hours, instead of three, because taxol is infused more slowly. Staff are very mindful of reactions during the administration of the drug. It makes for lovely opportunities to chat with my nurse, get to know her better, and to offer my respect and gratitude for the amazing work that they do.
My veins were described as hard to find, very small. and flat. (I should be proud that anything in my body is small and flat!) What this means is that it is difficult to find them and to get a site ready for the infusion. One amazing nurse, in particular, is a very knowledgeable and something of a magical person in her experience locating small, flat veins. With enormous respect I called her a fine scientist and witch. Thank God that she understood my meaning, and told me later in the day that she had taken it as a huge compliment. That is how I had meant it, of course.
How blessed our region is to have such a superb Cancer Centre! There was a time when we had to travel far afield for these services, now they are available right in Kitchener.
I have to go. Must get prettied up for my trip to the theatre tonight; we will see each other around, soon, on the way to Santiago.
We are celebrating my graduation into the second series of Chemotherapy injections. Pilgrim friends, say hi to my new drug Taxol! The best thing is that I don't have to worry about nausea with this new concoction. The bad thing is that there may be pain as a side effect. However, I have my prescription ready, and gladly will follow instructions and keep resting and minding my body's requests. As Sara says, we will get through this.
We are also celebrating our new awareness that the cancer which had invaded me in the form of a lump in my left breast and then had moved on to 8 of ten lymph nodes, should be seen as GONE. My oncologist clarified this for us this week, reminding me that the chemo I am undergoing and the radiation treatments to come should be seen as "adjuvant" treatment.
So what is "adjuvant"? To quote the very popular Wikipedia:
An example of adjuvant therapy is the additional treatment usually given after surgery where all detectable disease has been removed, but where there remains a statistical risk of relapse due to occult disease. If known disease is left behind following surgery, then further treatment is not technically adjuvant.
Wow, can you imagine how we felt? We, David and I, are pretty educated people, yet we had not absorbed this either intellectually or emotionally. So, up to now, we have been living with cancer, rather than living as survivors of cancer.
This is a huge emotional difference, and it is worth celebrating with loud alleluias, and trips to Stratford. (To each her own!)
I feel well today. My baking hormones seem to have been awakened, and I made banana bread with some over ripe bananas. Also made olive and onion bread from an old Greek recipe. The kitchen smells wonderful, and sweet David keeps making short trips to the kitchen, in hopes of some samples...
Lots to do and lots of waiting and work on my health yet. The next three chemo sessions are going to take five hours, instead of three, because taxol is infused more slowly. Staff are very mindful of reactions during the administration of the drug. It makes for lovely opportunities to chat with my nurse, get to know her better, and to offer my respect and gratitude for the amazing work that they do.
My veins were described as hard to find, very small. and flat. (I should be proud that anything in my body is small and flat!) What this means is that it is difficult to find them and to get a site ready for the infusion. One amazing nurse, in particular, is a very knowledgeable and something of a magical person in her experience locating small, flat veins. With enormous respect I called her a fine scientist and witch. Thank God that she understood my meaning, and told me later in the day that she had taken it as a huge compliment. That is how I had meant it, of course.
How blessed our region is to have such a superb Cancer Centre! There was a time when we had to travel far afield for these services, now they are available right in Kitchener.
I have to go. Must get prettied up for my trip to the theatre tonight; we will see each other around, soon, on the way to Santiago.
Saturday, June 25, 2011
Planetary Pilgrims get Philosophical Sometimes
Pastoral Care for Someone Living With Cancer
I am still thinking about some of the things I heard at a workshop on living with cancer, which I attended some years ago. The more I think about it, the more implications I see for pastoral care. Cancer (together with AIDS, which often renders the patient susceptible to cancer) is the new "leprosy".
There are many aspects to this condition that isolate patient and family, even at the very moment that the community wants to offer support.
Shock and horror - together with the inevitable sense of relief that "Gee, I hope I don't get it", with the attendant feeling of guilt and pity, all conspire to make for a huge power differential between the patient and others in the immediate and extended community.
Loss of self - patient, family and the entire circle of friends become saturated with the crisis, and the patient, even though at the centre, can experience a loss of selfhood. One knows that people are talking about one's condition and about how one is feeling. There are huge expectations to "fight a good fight", a "courageous battle". To what extent does a person feel like wearing a mask to keep people from constantly wondering how one is doing?
"How are you doing?" - I wonder how many times patients would like to answer: "Well, I feel crappy, and am scared shitless that I'll die from this, I am damned bitter about having my hopes shattered, my family life threatened, my kids having to do all this work on my behalf when they should be launching their career. I am pissed, and sometime I feel sorry for myself, and utterly alone. I lie there next to my husband, and am afraid to touch him, I could not stand his rejection. So, he lies there afraid to touch me, lest he hurt me! A fine pair we are..."
Crazy making language - you are fighting a battle with cancer, hating the tumour means hating a part of yourself. We tend to demonize a tumour, yet at a certain level it is a part of your body. Radical procedures such as a mastectomy mean rending, tearing, cutting off a part of your body, which you mourn. And the worst cut of all: a cancer cell is one that has been “favoured”, somehow, it is a cell that is growing and doing much too well (in the illogical logic of Cancer!).
Living with a death sentence – there is a sudden awareness of this, a sense that one is "condemned". People begin to see you as tarnished, it becomes the chief part of your identity. People struggle with what to say. To make it better, patient ends up comforting the care givers!
The human body is a time-limited offer - yet Cancer seems to be an intruder, much more than other conditions. We are not always logical about living and dying, yet there is a “cancer logic” that seems to insist that Cancer is a curse. Some groups do not even like to utter the word Cancer. It is as if, by magic, one could bring it on oneself by speaking the word. There is a sense of “blame” associated with Cancer that is not present in, say, Parkinson’s, or Multiple Sclerosis. Why is that? When Cancer is detected early, the medications sometimes make you sick, very sick, long before the symptoms of Cancer make you sick. Another example of the craziness of living with Cancer. Do I have to feel guilty because I cannot see that pain really has to come before gain? What if I don’t gain?
Role of alternative methods – While we encourage people to take initiative and a proactive stance toward one’s health, the moment a cancer patient seeks alternative methods we seem to assume that the patient is in denial, or desperate. Why is that? If extracurricular activity is what makes you really feel that you are alive in high school, how can we ensure that we do extracurricular activities when a person has cancer? We have not yet begun to explore fully the role of intentional stress relief activities and lifestyles.
Where is God in all this? - Where do we begin to give the message that life is short, always too short, but ever so precious? When do we begin to acknowledge that quality (not length) of life is a patient’s right, not a luxury? When do we begin to acknowledge that education about how to relate to a friend or loved one who has cancer is a huge part of the healing process? What does “teach us to number our days so that we may grow in wisdom (Ps. 90:12)” mean in this context?
And when do we stop telling a person that they must stay positive? - My friend says: "If someone tells me one more time to stay positive, I will scream!". What does that mean, exactly? How do you stay positive? What if you are not feeling well? Does that mean that you are not fighting the good fight and staying positive? Hmm...
I am feeling good today. Really good. I vacuumed, cooked a pot roast, and made a really delicious spaghetti sauce, with lots of garlic. I am going out shopping with David soon.
This felt like a good day to jot down these thoughts. I have been wondering how my experience with cancer will affect the quality of my work as a chaplain. So, I thought I would jot these thoughts down. They are not original, and some I have written before.
On the way to Santiago, there is a field where people have created stone cairns, hundreds of them, one stone at a time. Today, with you, on the way to Santiago, I am placing one little stone on one of the cairns, to symbolize my thoughts as a chaplain who will return to work someday. And we will see you around, one pebble at a time, on the way to Santiago!
I am still thinking about some of the things I heard at a workshop on living with cancer, which I attended some years ago. The more I think about it, the more implications I see for pastoral care. Cancer (together with AIDS, which often renders the patient susceptible to cancer) is the new "leprosy".
There are many aspects to this condition that isolate patient and family, even at the very moment that the community wants to offer support.
Shock and horror - together with the inevitable sense of relief that "Gee, I hope I don't get it", with the attendant feeling of guilt and pity, all conspire to make for a huge power differential between the patient and others in the immediate and extended community.
Loss of self - patient, family and the entire circle of friends become saturated with the crisis, and the patient, even though at the centre, can experience a loss of selfhood. One knows that people are talking about one's condition and about how one is feeling. There are huge expectations to "fight a good fight", a "courageous battle". To what extent does a person feel like wearing a mask to keep people from constantly wondering how one is doing?
"How are you doing?" - I wonder how many times patients would like to answer: "Well, I feel crappy, and am scared shitless that I'll die from this, I am damned bitter about having my hopes shattered, my family life threatened, my kids having to do all this work on my behalf when they should be launching their career. I am pissed, and sometime I feel sorry for myself, and utterly alone. I lie there next to my husband, and am afraid to touch him, I could not stand his rejection. So, he lies there afraid to touch me, lest he hurt me! A fine pair we are..."
Crazy making language - you are fighting a battle with cancer, hating the tumour means hating a part of yourself. We tend to demonize a tumour, yet at a certain level it is a part of your body. Radical procedures such as a mastectomy mean rending, tearing, cutting off a part of your body, which you mourn. And the worst cut of all: a cancer cell is one that has been “favoured”, somehow, it is a cell that is growing and doing much too well (in the illogical logic of Cancer!).
Living with a death sentence – there is a sudden awareness of this, a sense that one is "condemned". People begin to see you as tarnished, it becomes the chief part of your identity. People struggle with what to say. To make it better, patient ends up comforting the care givers!
The human body is a time-limited offer - yet Cancer seems to be an intruder, much more than other conditions. We are not always logical about living and dying, yet there is a “cancer logic” that seems to insist that Cancer is a curse. Some groups do not even like to utter the word Cancer. It is as if, by magic, one could bring it on oneself by speaking the word. There is a sense of “blame” associated with Cancer that is not present in, say, Parkinson’s, or Multiple Sclerosis. Why is that? When Cancer is detected early, the medications sometimes make you sick, very sick, long before the symptoms of Cancer make you sick. Another example of the craziness of living with Cancer. Do I have to feel guilty because I cannot see that pain really has to come before gain? What if I don’t gain?
Role of alternative methods – While we encourage people to take initiative and a proactive stance toward one’s health, the moment a cancer patient seeks alternative methods we seem to assume that the patient is in denial, or desperate. Why is that? If extracurricular activity is what makes you really feel that you are alive in high school, how can we ensure that we do extracurricular activities when a person has cancer? We have not yet begun to explore fully the role of intentional stress relief activities and lifestyles.
Where is God in all this? - Where do we begin to give the message that life is short, always too short, but ever so precious? When do we begin to acknowledge that quality (not length) of life is a patient’s right, not a luxury? When do we begin to acknowledge that education about how to relate to a friend or loved one who has cancer is a huge part of the healing process? What does “teach us to number our days so that we may grow in wisdom (Ps. 90:12)” mean in this context?
And when do we stop telling a person that they must stay positive? - My friend says: "If someone tells me one more time to stay positive, I will scream!". What does that mean, exactly? How do you stay positive? What if you are not feeling well? Does that mean that you are not fighting the good fight and staying positive? Hmm...
I am feeling good today. Really good. I vacuumed, cooked a pot roast, and made a really delicious spaghetti sauce, with lots of garlic. I am going out shopping with David soon.
This felt like a good day to jot down these thoughts. I have been wondering how my experience with cancer will affect the quality of my work as a chaplain. So, I thought I would jot these thoughts down. They are not original, and some I have written before.
On the way to Santiago, there is a field where people have created stone cairns, hundreds of them, one stone at a time. Today, with you, on the way to Santiago, I am placing one little stone on one of the cairns, to symbolize my thoughts as a chaplain who will return to work someday. And we will see you around, one pebble at a time, on the way to Santiago!
Sunday, June 19, 2011
Getting Ready For Part Two!
After the halfway mark, my doctor has informed me, the chemo cocktail changes. Two ingredients will be dropped and a new one will be added.
I will be welcoming Paclitaxel, commonly called Taxol, into my life. This medication is used for the treatment of ovarian, breast, lung and other cancers. It is infused into the blood stream over a number of hours.
Because allergic reactions may occur during the infusion, my chemotherapy nurse will be very alert in watching for any reactions such as back pain, flushing, shortness of breath, chest pain, dizziness, itching or rash. It will be given slowly, to ensure that the infusion goes safely.
The more common side effects will be chills, cough, low white blood cells, numbness and tingling in hands and feet, muscle or joint pain, nausea, shortness of breath, and thinning or losing hair. Lovely! We will meet whatever comes and try to do our best.
Because I have diabetes, I have to be careful about the fact that certain medications I receive tend to raise the blood sugar levels too much. I am trying to maintain a balance between the medications I can control, and the carbohydrates I can avoid. Soon I will be meeting my endocrinologist to make sure we are on track with all this.
All of these developments have given me a renewed appreciation for the science of pharmacology. A very helpful and empowering part of my treatment has been the "Pharmacy teaching" component. The pharmacist explains everything, and shares printed materials regarding the drugs. This has made me feel like I have some control of the information, and a more concrete idea of what awaits me.
Waiting, preparing, looking forward, visiting with my daughter, talking with family and friends, and moving toward the next time. Moving, ever closer, and we will see you again, soon, on the way to Santiago.
I will be welcoming Paclitaxel, commonly called Taxol, into my life. This medication is used for the treatment of ovarian, breast, lung and other cancers. It is infused into the blood stream over a number of hours.
Because allergic reactions may occur during the infusion, my chemotherapy nurse will be very alert in watching for any reactions such as back pain, flushing, shortness of breath, chest pain, dizziness, itching or rash. It will be given slowly, to ensure that the infusion goes safely.
The more common side effects will be chills, cough, low white blood cells, numbness and tingling in hands and feet, muscle or joint pain, nausea, shortness of breath, and thinning or losing hair. Lovely! We will meet whatever comes and try to do our best.
Because I have diabetes, I have to be careful about the fact that certain medications I receive tend to raise the blood sugar levels too much. I am trying to maintain a balance between the medications I can control, and the carbohydrates I can avoid. Soon I will be meeting my endocrinologist to make sure we are on track with all this.
All of these developments have given me a renewed appreciation for the science of pharmacology. A very helpful and empowering part of my treatment has been the "Pharmacy teaching" component. The pharmacist explains everything, and shares printed materials regarding the drugs. This has made me feel like I have some control of the information, and a more concrete idea of what awaits me.
Waiting, preparing, looking forward, visiting with my daughter, talking with family and friends, and moving toward the next time. Moving, ever closer, and we will see you again, soon, on the way to Santiago.
Thursday, June 16, 2011
THIS PLANETARY PILGRIM HAS PASSED THE HALFWAY MARK!
So I have passed the halfway chemo mark. There are many ways to celebrate this, and we will celebrate all weekend, but there is no better way than to echo my Muslim friends: "al hamdu li llah!" This phrase is on my Muslim friends' lips night and day, and it means "Glory to God" -- for the good things and for the perplexing surprises, and even for the hurts and aches that we meet in life.I have learned a great deal from this attitude.
What does passing the halfway mark in my journey with chemotherapy mean to me and my family? It means that I have completed 4 out of eight treatments. It once seemed that we would never get this far!
Time hangs heavy when you wait. If you don't believe me, check out that Sesame Street Monsterpiece theatre video parody on Waiting for Godot. I love reading and staying busy. I am not affected by boredom. And I am a cheerful person that is interested in many things. But chemo takes the wind out of your sails. You get tired, and are at risk of becoming depressed.
Depression is a window that I have had little exposure to in my personal life. I get fraps and freakings out, but not depression --some people would say that I am not likely to get a heart attack, but am likely to give a heart attack!
Depression is a window that I have had little exposure to in my personal life. I get fraps and freakings out, but not depression --some people would say that I am not likely to get a heart attack, but am likely to give a heart attack!
So the waiting has been heavy. And this is where friends have come in. Mieke, Marian, Kathy, Lynda, Debbie, John, Sara, Pauline, Lucia, Wasan, Elaine, Mary, Douggie, and so many others! Coffee and Greek food at Melitsa's on Belmont, a sandwich at Vincenzo's, Tim Horton's visits and a RRoll up the Rim card! Such delights! Therapeutic tough has been an amazing resource to keep me focused and relaxed. Emails from far and near, and a special chapter dedicated to my children's friends.
And family! My sister Grace who took me shopping for eyelashes (which I have not needed yet, Grace, but I am ready!) and gives me courage in word and deed every time we talk, and my sister Pichi who came from Puerto Rico and helped me figure out pharmacy information on chemo and also gave me some not-too shabby lessons in courage.
Two metaphors of grace and beauty characterize my wonderful sisters. Through hell and high water, I imagine Grace as a smooth, strong, classy and determined biker, moving along the bike paths in New Jersey, and in Manhattan, by the river. It is not always easy to meet the challenge of the wheels on the path, other bikers, the sun in your face, and of muscles asking for a break. But she keeps going, despite interruptions and pain, sure to reach her goal. And I imagine my other sister, Pichi, as a resourceful bullfighter, now shaking her red cloth, now turning away in disdain from the bull, now coaxing a response, now taking a serious aim, silently assessing problems with unshakeable faith. How did I get two such strong women for sisters? Parents, perhaps? Have their children shaped them? Work? Faith? Three metaphors, the Biker, the Bulfighter and the Pilgrim. Thinking about each metaphor has helped me to survive these four weeks, and will help during the four treatments of the next eight weeks
Two metaphors of grace and beauty characterize my wonderful sisters. Through hell and high water, I imagine Grace as a smooth, strong, classy and determined biker, moving along the bike paths in New Jersey, and in Manhattan, by the river. It is not always easy to meet the challenge of the wheels on the path, other bikers, the sun in your face, and of muscles asking for a break. But she keeps going, despite interruptions and pain, sure to reach her goal. And I imagine my other sister, Pichi, as a resourceful bullfighter, now shaking her red cloth, now turning away in disdain from the bull, now coaxing a response, now taking a serious aim, silently assessing problems with unshakeable faith. How did I get two such strong women for sisters? Parents, perhaps? Have their children shaped them? Work? Faith? Three metaphors, the Biker, the Bulfighter and the Pilgrim. Thinking about each metaphor has helped me to survive these four weeks, and will help during the four treatments of the next eight weeks
Carolyn, my other sister (she is David's sister) has been here this week. It has been fun, and very helpful, as she accompanied us to chemo yesterday. Today she is helping us to get our home ready for my daughter, who arrives soon from Ottawa for a visit. What a blessing she has been, supporting, talking, laughing with us.
Lots to write about. a chapter on my David coming soon, and on my children. They are part of my symbols of pilgrimage.
And a simple chapter on the pharmacology of chemo, and how that will change during the next four treatments.
Off to the airport, to get Ioanna, and we will see you around, soon, on the way to Santiago!
Wednesday, June 1, 2011
Some Times Planetary Pilgrims Lose the Filter Between Their Brain and Their Mouth!
The pharmacist warned me there would be days like today. Some medications make you have up and down mood swings, and you might speak out of the wrong side of your mouth. Today, it happened.
Today I had my third chemo. Five more to go. Now I must go take my magic pills, to ensure a minimum of side effects. Tomorrow I get to go with two darling friends to Tai Chi at Hope Spring. Will tell you about it later.
How lucky I am.We will see you again, listening and staying mindful, on the way to Santiago.
My friend Sara kindly came to visit during the third chemo session this afternoon. When I told her my little story, she laughed and said "I guess you lost the filter between your brain and your mouth!" How right she was! How important those filters are, and how much we need them as part of the ever-so-essential lubricant in human encounters!
It all started in March, when lymph nodes were removed from my left arm. As a result, I only have the right arm available for taking blood samples, or for injecting IV medications. I am still getting over this. It feels like a big loss, and I might be worrying about it more than I thought I was.
When my nurse tried to find a vein this afternoon I was somewhat anxious. After she had rubbed my arm for what seemed like a long time, a l o n g t i m e, I heard my voice saying very sweetly "You can't find it, can you?" (It was indeed my voice, I can confirm this!)
Eventually a vein was found; I was gently pinched, and a needle was inserted. Shortly afterward it was taken out with the explanation that the vein was not responding properly.
When one has little to worry about, one worries about little things. I could feel my stress level rising. After a brief dialogue about "what happens next?", my nurse asked a colleague to try the procedure. This second effort was successful and we were off to the races.
I am mentioning this as an example of how simple my concerns are these days - whether we find a vein! Hello!!! Of course we will find a vein!
Also, I am telling this story as an example of how one stresses over whatever - big or small - is on the horizon.
A third reason is the lesson I learned about "filters", as my friend Sara helped me to identify.
I need to stay alert, to hear my voice. I cannot always stop myself, perhaps, but I can listen. Today I was able to speak kindly to my nurse after my chemo, and to thank her for trying so hard to get me started.
This evening I was reminded of a good Psalm for Planetary Pilgrims. Listen to a few lines:
"... You have searched me and you know me, you know when I sit and when I rise, you preceive my thoughts from afar. ... you are familiar with all my ways. Before a word is on my tongue, you know it completely. ... Where can I go from your spirit? Where can I fly from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me..."I need to be aware of my humanity, cut myself some slack, even on days like today. I need to listen to myself, to be aware that before a word is out of my mouth, a power greater than I is present in the encounter. I need to listen, to trust myself, to be willing to admit it when I blow it, and to make amends in good faith.
Today I had my third chemo. Five more to go. Now I must go take my magic pills, to ensure a minimum of side effects. Tomorrow I get to go with two darling friends to Tai Chi at Hope Spring. Will tell you about it later.
How lucky I am.We will see you again, listening and staying mindful, on the way to Santiago.
Sunday, May 29, 2011
Planetary Pilgrims Use Imagery to Visualize Chemotherapy
This is how I imagine the modern science of Chemotherapy working in my body. I admit that I am a Startrek fan. In my imagination the great ship Enterprise is my body. Even though there are cancer cells trying to destroy my Starship, yet it keeps flying through this particular dangerous valley of space. Other vessels come to the aid of the Enterprise. It keeps on going, a bit wounded, perhaps broken, yet it keeps going. And, in the end, with the help of the chemo, it will prevail!
And now, I must get going, reminding you that we are walking to Santiago de Compostela, and that one possible meaning of Compostella is "Field of Stars". We will see each other around, on the way to Santiago.
And now, I must get going, reminding you that we are walking to Santiago de Compostela, and that one possible meaning of Compostella is "Field of Stars". We will see each other around, on the way to Santiago.
Tuesday, May 24, 2011
Depression and "staying in the moment"
Today is Tuesday. On Sunday I had what might be termed a not-so-good day. Nothing at all, except a general feeling of weakness that took over my whole body. I did not go out, I did not go downstairs, I just stayed in bed and slept.
Then Monday came along, and it was dark, overcast, windy, not a very friendly sort of day. I still felt weak and weary. By noon, it was a bit alarming. I did not want to get up, I just wanted to sleep. Nothing was interesting - not food, not conversation, not reading. I have a couple of films that I want to see, but it did not seem like a good idea at the time. Just no desire at all.
David was good to me. He kept his cool, and asked me from time to time if I wanted anything, but otherwise he went on spending time doing his things. That was helpful. Feeling as despondent as I did, the last thing I needed was to have someone hovering over me as if something dreadful was happening.
My mind was mostly blank. There was no challenge to think thoughts, or to get better. I decided that I would keep a watch over my mood, and not worry about what was happening, unless a third day of "blah" came along.
Today, the sun is shining, I did one load of laundry, and I had some tomato soup. I just decided that I do not like tomato soup any more. I cannot imagine ever liking it again! My sister Pichi warned me there would be days like this. "On such days, don't eat your favourite food, and don't listen to your favourite music" she wrote me. She is right. I could lose the taste for it!
Water is tasting salty. At first I thought it was something in the taps. So, I bought a bottle of something called smart water. It also tasted salty! It must be something related to the chemo. So, even though I dearly love fiddlehead ferns, and this is the season to enjoy them, I shall keep them for another time. Would not like to spoil that pleasure.
I do not feel sad or depressed today, though I had a conversation with someone who mostly spoke of negative things! I have resolved to avoid Google diagnosis, and to stay away from too much information about what is coming. "Stay in the moment", shall be my motto, for I cannot add a single inch to my stature, nor can I meet tomorrow until it comes.
And if it gets hairy scary, I shall call my sister the Peach, who is an expert in the art of distraction. I don't have two sisters for nothing! Each one has her own special talent and someday soon I shall tell you about Grace.
It is time I got going, and I will see you around resting, relaxing, and staying in the moment, on the way to Santiago.
Then Monday came along, and it was dark, overcast, windy, not a very friendly sort of day. I still felt weak and weary. By noon, it was a bit alarming. I did not want to get up, I just wanted to sleep. Nothing was interesting - not food, not conversation, not reading. I have a couple of films that I want to see, but it did not seem like a good idea at the time. Just no desire at all.
David was good to me. He kept his cool, and asked me from time to time if I wanted anything, but otherwise he went on spending time doing his things. That was helpful. Feeling as despondent as I did, the last thing I needed was to have someone hovering over me as if something dreadful was happening.
My mind was mostly blank. There was no challenge to think thoughts, or to get better. I decided that I would keep a watch over my mood, and not worry about what was happening, unless a third day of "blah" came along.
Today, the sun is shining, I did one load of laundry, and I had some tomato soup. I just decided that I do not like tomato soup any more. I cannot imagine ever liking it again! My sister Pichi warned me there would be days like this. "On such days, don't eat your favourite food, and don't listen to your favourite music" she wrote me. She is right. I could lose the taste for it!
Water is tasting salty. At first I thought it was something in the taps. So, I bought a bottle of something called smart water. It also tasted salty! It must be something related to the chemo. So, even though I dearly love fiddlehead ferns, and this is the season to enjoy them, I shall keep them for another time. Would not like to spoil that pleasure.
I do not feel sad or depressed today, though I had a conversation with someone who mostly spoke of negative things! I have resolved to avoid Google diagnosis, and to stay away from too much information about what is coming. "Stay in the moment", shall be my motto, for I cannot add a single inch to my stature, nor can I meet tomorrow until it comes.
And if it gets hairy scary, I shall call my sister the Peach, who is an expert in the art of distraction. I don't have two sisters for nothing! Each one has her own special talent and someday soon I shall tell you about Grace.
It is time I got going, and I will see you around resting, relaxing, and staying in the moment, on the way to Santiago.
Friday, May 20, 2011
Two down, six to go!
I am writing on Friday morning. On Tuesday I went with David to the Grand River Regional Cancer Centre, and had my blood work-up, which revealed I was fit for my second chemotherapy session. I met with Dr. Bahl, and with the coordinating Nurse, Erin, and away we went, to return on Thursday.
On Tuesday evening I felt a bit apprehensive, not a lot, but a bit of "Oh, dear, suppose I get sick this time!" The first session and the weeks that followed went so well, that I thought maybe it could not stay good for ever.
I need not have bothered. Wednesday morning dawned, slightly overcast, but not raining. We have had rain, it seems, for forty days and forty nights in SW Ontario! The grass has kept growing and growing, with no opportunity to mow - it was so wet. At the Hospital, once inside, it felt sunny and warm. There is a hopeful, good, open spirit there and I like it! No grim valley there, only light and hope - always hope.
An hour into my session I received a visit from a tall, cheerful man, with a beautiful shirt and purple tie. John Milloy, he has been a friend of David's, and mine, for many years. I appreciated his cheerful, supportive visit. Though he had attended the official opening some time ago, he enjoyed seeing the facility in action, with staff and patients actively doing their healing work.
As a chaplain at St. Mary's General Hospital, I have often taken a warm blanket to a patient. It was a different thing altogether to receive two warm blankets from staff and from a patient's relative. It is good to give - some say it is better to give than to receive. Yet is it humbling and reassuring to receive. And I have received so much -- a beautiful pink prayer shawl made by Dianne to take with me to chemo, a gorgeous multiculoured one from Katharine to keep me warm at home, books, lovely scented candles to burn brightly and remind me to stay centred, music, gifts of food, and flowers - our home has been full of flowers since March.
A few nights ago I received a visit from three lovely young ladies and their parents. They have been worried about their "adopted Grandma", and wanted to see for themselves that I am doing well. They are all under eleven, and very dignified. It was a beautiful visit. I plan to invite them to join me briefly on the Cancer Walk, when I join this activity next year. Together we will "walk to Santiago" telling the world that cancer can be beaten. Indeed, we are not alone. And on Thursday, my wonderful neighbour Debbie, who has so much work as it is, mowed our lawn!!!
I must get going, it is time for breakfast, the house is quiet upstairs, but I plan to wake them up (David and our dog Toby) with some Oscar Peterson music. I will see you soon, listening to some Canadian Jazz on the way to Santiago!
On Tuesday evening I felt a bit apprehensive, not a lot, but a bit of "Oh, dear, suppose I get sick this time!" The first session and the weeks that followed went so well, that I thought maybe it could not stay good for ever.
I need not have bothered. Wednesday morning dawned, slightly overcast, but not raining. We have had rain, it seems, for forty days and forty nights in SW Ontario! The grass has kept growing and growing, with no opportunity to mow - it was so wet. At the Hospital, once inside, it felt sunny and warm. There is a hopeful, good, open spirit there and I like it! No grim valley there, only light and hope - always hope.
An hour into my session I received a visit from a tall, cheerful man, with a beautiful shirt and purple tie. John Milloy, he has been a friend of David's, and mine, for many years. I appreciated his cheerful, supportive visit. Though he had attended the official opening some time ago, he enjoyed seeing the facility in action, with staff and patients actively doing their healing work.
As a chaplain at St. Mary's General Hospital, I have often taken a warm blanket to a patient. It was a different thing altogether to receive two warm blankets from staff and from a patient's relative. It is good to give - some say it is better to give than to receive. Yet is it humbling and reassuring to receive. And I have received so much -- a beautiful pink prayer shawl made by Dianne to take with me to chemo, a gorgeous multiculoured one from Katharine to keep me warm at home, books, lovely scented candles to burn brightly and remind me to stay centred, music, gifts of food, and flowers - our home has been full of flowers since March.
A few nights ago I received a visit from three lovely young ladies and their parents. They have been worried about their "adopted Grandma", and wanted to see for themselves that I am doing well. They are all under eleven, and very dignified. It was a beautiful visit. I plan to invite them to join me briefly on the Cancer Walk, when I join this activity next year. Together we will "walk to Santiago" telling the world that cancer can be beaten. Indeed, we are not alone. And on Thursday, my wonderful neighbour Debbie, who has so much work as it is, mowed our lawn!!!
I must get going, it is time for breakfast, the house is quiet upstairs, but I plan to wake them up (David and our dog Toby) with some Oscar Peterson music. I will see you soon, listening to some Canadian Jazz on the way to Santiago!
Another Planetary Pilgrim to Give me Hope - David Giuliano
My friend John Lochead shared a book with me recently. It is called Postcards from the Valley and has been written by David Giuliano. In 2006 David, a minister from Marathon, Ontario, had just been elected Moderator of the United Church of Canada, when he discovered that he had cancer. Listen to his story in three brief sentences, as he describes how his life changed on that day, as he stood on the stage, singing "Everything before us brought us to this moment, standing on the threshold of a brand new day":
The title Postcards From the Valley refers, I suppose to Psalm 23, "though I walk through the valley of the shadow of death I shall fear no evil". It is a wonderful little book, and I recommend it, both as a collection of essays about walking through cancer, and as a witness to the power of faith and determination to live a life that proclaims that "we are not alone".
Just yesterday I was saying to my son John that the emotions uppermost in my mind during these months have been gratitude and joy. Every time that have I dwelt "in the moment" I have been aware of how well accompanied I have been. Everywhere I have been treated with respect, and buoyed by a great company of friends and family, scholars, doctors, nurses and technicians, chaplains, and the extraordinary people who volunteer at the Cancer Centre. Indeed I can say: "We are not alone, thanks be to God".
Now, I must get on with writing about my chemo, in my next post. And I will see you around, taking my anti-emetic pills and my hugely expensive Neulasta, on the way to Santiago!
"On the sky the northern lights danced green and purple with our spirits. Afterward, back on earth Pearl and I sat on the narrow residence bed and marvelled at the remarkable thing happening to our lives. Then I felt a lump on my temple."His book deals in part with his journey through fear, cancer, surgeries, some facial disfigurement, more fear, radiation, more treatments, weakness, more fear. It also soars with hope, determination, faith, compassion, action. Listen just one more time:
"I dreamed of leading our church from a place of strength, wisdom and creativity. Instead I have been offering my weakness to the church, trusting that 'God's power is made perfect in weakness' (2 Cor. 12:9). I would not have chosen it, but I cannot deny that it has been a gift to me and to others."I have found Giuliano's essays on fear to be very helpful. Fear is something I have been acquainted with lately. Not fear of death, but fear of the effects of cancer, fear for my children, for David; fear that they have to go through this with me. And yes, fear for myself. Giuliano has reminded me that fear is not an emotion about yesterday, or even about today -- it is an emotion concerning tomorrow. This is a powerful reminder, because the fact is that we only own today, only this minute is ours. Tomorrow is not yet in our hands, is it?
The title Postcards From the Valley refers, I suppose to Psalm 23, "though I walk through the valley of the shadow of death I shall fear no evil". It is a wonderful little book, and I recommend it, both as a collection of essays about walking through cancer, and as a witness to the power of faith and determination to live a life that proclaims that "we are not alone".
Just yesterday I was saying to my son John that the emotions uppermost in my mind during these months have been gratitude and joy. Every time that have I dwelt "in the moment" I have been aware of how well accompanied I have been. Everywhere I have been treated with respect, and buoyed by a great company of friends and family, scholars, doctors, nurses and technicians, chaplains, and the extraordinary people who volunteer at the Cancer Centre. Indeed I can say: "We are not alone, thanks be to God".
Now, I must get on with writing about my chemo, in my next post. And I will see you around, taking my anti-emetic pills and my hugely expensive Neulasta, on the way to Santiago!
Tuesday, May 10, 2011
Welcome to Pilgrim Friends in a Lot of Places!
We have friends in many places, but I want to welcome and greet these, and thank them for following this blog! Thank you also for the e-mails you send me.
Many of you have may have happened upon this blog while you were looking for something else. Others are friends and family. To all, I give a warm welcome, and a firm commitment to keep on telling the story of this challenging journey. I do believe that Cancer can be beaten, and I am working with my medical team, dancing as fast as I can, while they work as hard as they can to make cancer history.
Today I have some news of side effects, but nothing outlandish or hard to live with. For the past three days I have had hard pain in my ribs, and felt quite tired. This was expected as a result of Neulasta, and we are taking it in stride. No fever, although I came close last night. And, though I have been diligent with rinsing and brushing, I do have a few very small mouth sores. This is also a consequence of Neulasta, and it is a small price to pay, for the wonderful support to my white blood cells that this medication affords me.
The Grand River Hospital pharmacy makes a potion, a "magical" rinse based on many different meds, and it sits in a cool-aid solution. See? I told you it is magical. We know, of course, that there is no magic to this. Every thing happens as a result of something else, and those of us who count our origins from faith traditions know that we are not alone.
I never told you about my shaved head. It is gorgeous, I am told by my family that I have a very nicely shaped head. Of course the hair on my head has not fallen yet, but I decided to meet this side effect out at the crossroads, rather than wait for it to find me at home. So, on the Tuesday after Easter, in the presence of my grandchildren Gabriel, Jacob and Grace, David, my sister Grace and my daughter Ioanna, we made an Easter event out of my shearing. My son-in-law Daniel Martin looked at me firmly in my eyes and said: "Mom, I am honoured to do this for you". It was a touching ceremony, affirming that although the hair will fall, yet it will, by the Grace of God, grow again.
On the day of my first chemo session, one of the volunteers offered the comment that for her the most difficult thing to cope with was the loss of her hair. I was reminded of a hopeful reading that I have heard many times during hard times. From time to time I have made references to my own personal faith in this blog. Indulge me, then, as I share with you a passage from the Prophet Ezekiel. His people were in exile, and despairing. There seemed no hope. Ezekiel, in his inimitable prose tells us a story. I do not expect this story to have happened as it is told, but I know that the meaning of it is true:
See, then the reading about the dry bones, which may be also the reading about my white hair:
Ezekiel 37
The Valley of Dry Bones
1. The hand of the LORD was on me, and he brought me out by the Spirit and set me in the middle of a valley; it was full of bones. 2. He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. 3. He asked me, “Son of man, can these bones live?” I said, “Sovereign LORD, you alone know.”
4. Then he said to me, “Speak to these bones and say to them, ‘Dry bones, hear the word of the LORD!
5. This is what the Sovereign LORD says to these bones: I will make breath enter you, and you will come to life. 6. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the LORD.’”
7. So I spoke as I was commanded. And as I was speaking, there was a noise, a rattling sound, and the bones came together, bone to bone. 8. I looked, and tendons and flesh appeared on them and skin covered them, but there was no breath in them.
9. Then he said to me, “Speak to the breath; speak, son of man, and say to it, ‘This is what the Sovereign LORD says: Come, breath, from the four winds and breathe into these slain, that they may live.’”
10. So I spoke as he commanded me, and breath entered them; they came to life and stood up on their feet—a vast army.
I have two beautiful white wigs, very short ones, like my own hair used to be. And I am getting a strawberry blond third hair piece, with auburn roots, to look as my hair did when I was younger.
What do I need to fear? - when Jen brought her beautiful children Chase and Sierra to visit, and I got to hold Chase for a good long time, while he slept.
There will be new breath, and new life, and yes, even hair, by the will of the Almighty. But first I must get going, And I will see you around, with my baseball cap, and my friends, on the Way to Santiago.
Many of you have may have happened upon this blog while you were looking for something else. Others are friends and family. To all, I give a warm welcome, and a firm commitment to keep on telling the story of this challenging journey. I do believe that Cancer can be beaten, and I am working with my medical team, dancing as fast as I can, while they work as hard as they can to make cancer history.
Today I have some news of side effects, but nothing outlandish or hard to live with. For the past three days I have had hard pain in my ribs, and felt quite tired. This was expected as a result of Neulasta, and we are taking it in stride. No fever, although I came close last night. And, though I have been diligent with rinsing and brushing, I do have a few very small mouth sores. This is also a consequence of Neulasta, and it is a small price to pay, for the wonderful support to my white blood cells that this medication affords me.
The Grand River Hospital pharmacy makes a potion, a "magical" rinse based on many different meds, and it sits in a cool-aid solution. See? I told you it is magical. We know, of course, that there is no magic to this. Every thing happens as a result of something else, and those of us who count our origins from faith traditions know that we are not alone.
I never told you about my shaved head. It is gorgeous, I am told by my family that I have a very nicely shaped head. Of course the hair on my head has not fallen yet, but I decided to meet this side effect out at the crossroads, rather than wait for it to find me at home. So, on the Tuesday after Easter, in the presence of my grandchildren Gabriel, Jacob and Grace, David, my sister Grace and my daughter Ioanna, we made an Easter event out of my shearing. My son-in-law Daniel Martin looked at me firmly in my eyes and said: "Mom, I am honoured to do this for you". It was a touching ceremony, affirming that although the hair will fall, yet it will, by the Grace of God, grow again.
On the day of my first chemo session, one of the volunteers offered the comment that for her the most difficult thing to cope with was the loss of her hair. I was reminded of a hopeful reading that I have heard many times during hard times. From time to time I have made references to my own personal faith in this blog. Indulge me, then, as I share with you a passage from the Prophet Ezekiel. His people were in exile, and despairing. There seemed no hope. Ezekiel, in his inimitable prose tells us a story. I do not expect this story to have happened as it is told, but I know that the meaning of it is true:
See, then the reading about the dry bones, which may be also the reading about my white hair:
Ezekiel 37
The Valley of Dry Bones
1. The hand of the LORD was on me, and he brought me out by the Spirit and set me in the middle of a valley; it was full of bones. 2. He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. 3. He asked me, “Son of man, can these bones live?” I said, “Sovereign LORD, you alone know.”
4. Then he said to me, “Speak to these bones and say to them, ‘Dry bones, hear the word of the LORD!
5. This is what the Sovereign LORD says to these bones: I will make breath enter you, and you will come to life. 6. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the LORD.’”
7. So I spoke as I was commanded. And as I was speaking, there was a noise, a rattling sound, and the bones came together, bone to bone. 8. I looked, and tendons and flesh appeared on them and skin covered them, but there was no breath in them.
9. Then he said to me, “Speak to the breath; speak, son of man, and say to it, ‘This is what the Sovereign LORD says: Come, breath, from the four winds and breathe into these slain, that they may live.’”
10. So I spoke as he commanded me, and breath entered them; they came to life and stood up on their feet—a vast army.
I have two beautiful white wigs, very short ones, like my own hair used to be. And I am getting a strawberry blond third hair piece, with auburn roots, to look as my hair did when I was younger.
What do I need to fear? - when Jen brought her beautiful children Chase and Sierra to visit, and I got to hold Chase for a good long time, while he slept.
There will be new breath, and new life, and yes, even hair, by the will of the Almighty. But first I must get going, And I will see you around, with my baseball cap, and my friends, on the Way to Santiago.
Friday, May 6, 2011
Neulasta Helps Planetary Pilgrims to Have Well Protected White Blood Cells
Yesterday, on my first day after chemo, I had an injection of neulasta. This is an amazing drug that helps breast cancer patients to cope with the damage to white blood cells due to chemotherapy. Chemo works by killing fast-growing cancer cells. Because chemo can't tell the difference between healthy fast-growing and unhealthy fast-growing, a potential side effect is damage to red and white blood cells.This would put me at risk of infections and delays in chemo treatments, which we would not want!
Now, I must be going, but we'll see each other around, on the way to wonderful Santiago.
The cost of this amazing drug is astronomical. We were told that the cost per injection is $2,300., and I will have to have a total of eight treatments. Here again, I have to state my sense of appreciation for the health care services we enjoy in this country. Thank you, Ontario! And thank God for drug benefit plans, right? It makes one wonder what it is that makes politicians in places like the U.S. not get it!
I feel well. No side effects yet, a lovely daughter, frequent calls from a son in California. The most amazing support from church and other friends. And David, always David!
Today we're going for a Mother's day mother-daughter pedicure. And we went for coffee with our family friend Barbara. Phone calls from great friends, and looking to setting up a calendar for visiting with a few friends during chemo. Can't wait till I see Wayne, who said he'd be "honoured" to go with me. The way I figure it, chemo does not have to be boring. A pain, inconvenient, maybe? Yes, perhaps, but boring when you have friends? No way!
Eight years ago today I was crossing Puente La Reina, on my pilgrimage to Santiago. Puente la Reina is a five arch bridge over the River Arga. It was endowed in the 12th century, by the Queen whose name was Dona Mayor, as a benefit to pilgrims, and for her soul.
Puente La Reina was a delightful town, and I much enoyed being there, catching up on my emails, and on my pilgrimage blog. I read a bit of that old blog today. What a different geography this present pilgrimage is, yet how inspiring and hopeful both have been!
Puente La Reina was a delightful town, and I much enoyed being there, catching up on my emails, and on my pilgrimage blog. I read a bit of that old blog today. What a different geography this present pilgrimage is, yet how inspiring and hopeful both have been!
Now, I must be going, but we'll see each other around, on the way to wonderful Santiago.
Wednesday, May 4, 2011
First Treatment; Seven to go!!!
This was a good day. Leisurely breakfast, time with my daughter and David, gradually making our way after lunch to Grand River Hospital.
Grand River Hospital hosts the Regional Cancer Centre. Thanks, Ontario for such a wonderful gift. And thanks to the Balsilie family for the beautiful building! Now that is a great investment, Mr. Balsilie, and I assure you it is much more appreciated than any hockey team that you might have invested in... I have invested in many a Blackberry during my career, and I am grateful that I am benefitting personally from your family's generosity.
First we had pharmacy teaching. The pharmacy teaching went very well. The Pharmacist was very helpful, explaining, clarifying, answering questions. I like it when professionals treat you like an adult. Even if you are sick, you are still a person with an intellect, with questions and concerns.
In the Chemo Suite, I preferred to sit. A call from my son John in Los Angeles was just the thing to get me started. After that I could turn off my phone. A quick visit from the most amazing chaplain John at Grand River Hospital. It was good to see him. I don't need to see him all the time, but this first time it was good. It centered my thoughts on hopeful things.
Lots of interaction with volunteers, and staff, all of them cheerful, hopeful, pleasant and respectful. My chemo nurse did all the work, giving me all the medication and information I needed. After two hours I was free to go.
As we left the hospital, a quick message from my friend Sara made me feel peaceful. I am being such a baby, aren't I? Sara knows about these processes from the inside, and her questions and comments made me feel calm as I left the safety of the hospital and went home.
Tonight we are having Vietnamese beef and noodle soup. Simple, not too salty. It is ready. And for good measure, David bought me some crackers. But I hope I may be spared the nausea. I intend to be vigilant about taking the enti-emetics and have no desire to be a hero.
So, it is time I got going. Sunny evening; soup's on. Family around. We are not alone, thanks be to God!
May is the best month for pilgrimage. Daffodils blooming, poppies everywhere, and mustard seed blooms covering the mountains of Northern Spain. I will see you around, surely, on the wonderful way to Santiago.
Grand River Hospital hosts the Regional Cancer Centre. Thanks, Ontario for such a wonderful gift. And thanks to the Balsilie family for the beautiful building! Now that is a great investment, Mr. Balsilie, and I assure you it is much more appreciated than any hockey team that you might have invested in... I have invested in many a Blackberry during my career, and I am grateful that I am benefitting personally from your family's generosity.
First we had pharmacy teaching. The pharmacy teaching went very well. The Pharmacist was very helpful, explaining, clarifying, answering questions. I like it when professionals treat you like an adult. Even if you are sick, you are still a person with an intellect, with questions and concerns.
In the Chemo Suite, I preferred to sit. A call from my son John in Los Angeles was just the thing to get me started. After that I could turn off my phone. A quick visit from the most amazing chaplain John at Grand River Hospital. It was good to see him. I don't need to see him all the time, but this first time it was good. It centered my thoughts on hopeful things.
Lots of interaction with volunteers, and staff, all of them cheerful, hopeful, pleasant and respectful. My chemo nurse did all the work, giving me all the medication and information I needed. After two hours I was free to go.
As we left the hospital, a quick message from my friend Sara made me feel peaceful. I am being such a baby, aren't I? Sara knows about these processes from the inside, and her questions and comments made me feel calm as I left the safety of the hospital and went home.
Tonight we are having Vietnamese beef and noodle soup. Simple, not too salty. It is ready. And for good measure, David bought me some crackers. But I hope I may be spared the nausea. I intend to be vigilant about taking the enti-emetics and have no desire to be a hero.
So, it is time I got going. Sunny evening; soup's on. Family around. We are not alone, thanks be to God!
May is the best month for pilgrimage. Daffodils blooming, poppies everywhere, and mustard seed blooms covering the mountains of Northern Spain. I will see you around, surely, on the wonderful way to Santiago.
Tuesday, May 3, 2011
Some Planetary Pilgrims are Lucky to Have Friends Like Josh!
My friend Josh, whom you met once already, has written a wonderful blog about how to live with chemo. It is amazing advice for surviving many other challenges. On the eve of my first day, I offer Josh Martin's wisdom. Josh, how did you get so wise, so young?
Tips for navigating chemotherapy/cancer treatment
Posted on April 26, 2011 by joshmartinink
"My friend and mentor, Myrta, was recently diagnosed with breast cancer. It was an upsetting blow to be sure. But the doctors are optimistic that Myrta will be able to beat it and that’s very comforting to hear. Optimism aside, she still has a long road of chemotherapy and radiation treatment ahead of her and that’ll be tough. Her treatment starts this Thursday and will be ongoing throughout the Spring, Summer and into the Fall.
I remember shortly after I had been diagnosed with leukemia a few years back, Myrta called me. “I hear you’re unconquerable,” she said over the phone in her usual inspiring and reassuring way. Those words filled me with amazing strength. Many of you will remember how “unconquerable” became my mantra and rallying cry. Now you know where that came from!
Myrta’s an incredible woman and I know her own unconquerable spirit will serve her well in this journey. In situations like this I always feel helpless. But having gone through a lot of chemo and radiation myself, I hope that I can offer some insights from my own experience that might be helpful. Everybody’s experience is different but I hope there are some useful nuggets in the 10 tips I’ve listed below.
On top of being one of the kindest, most sincere and compassionate people I know, Myrta is also a very talented writer and has been blogging about her experience with breast cancer. Click here to check out her blog and be sure to leave some words of encouragement.
Visualize: In one of Myrta’s recent posts, she talks about how she pictures herself as a boxer getting ready for a big fight. It’s interesting because that was definitely the same imagery that I used while I was undergoing treatment. Visualization is a great technique and really helps focus your energy on a mental image. I’m a big Rocky fan, so I’d often picture myself like him in the ring against a big opponent. And like the Rocky films I knew that round after round of chemo I was going to take a beating. But like the Italian Stallion, I just needed to keep on swinging and I’d win in the end. I also found it helpful to use less violent imagery. I’d visualize myself in the most tranquil and happy place I could conjure. For me it was at the end of a dock next to a cottage on a warm summer day. Just sitting there in the sun; completely healthy and at peace.
Get out of your head/distract yourself: Oh man, this was a big one for me. I have a WAY too active imagination and getting caught up in my thoughts can be very dangerous. If you find yourself brooding on things or letting your imagination run wild, it’s time to get out of your head. Call up a friend, watch some TV, go for a walk, do a crossword—a lot of time you can be your own worst enemy.
Stay off the Internet: Another big one I learned the hard way. In my attempt to be as prepared as I could be, I spent a lot of time doing research online about my disease. BE CAREFUL! The internet is a minefield of misinformation and out-dated material. That’s not to say you shouldn’t try to be as informed as possible (see the next tip). It just means, don’t get carried away, choose your websites wisely and remember that no two cases of cancer are the same and everybody’s experience is different.
Be your own advocate: My doctors and nurses were awesome while I was undergoing treatment. But the reality is that they’re very busy people with too many patients and as a result they may rush through explaining things to you or throw around terms that go over your head. You have to be your own advocate. Insist that they explain things if you don’t understand something. Bring a list of the questions you want to ask and make sure they take the time to answer all of them. And also remember: doctors aren’t mind readers. It’s up to you to bring to their attention how you’re feeling and the concerns you have.
Focus on the big picture: Keep your eye on the prize. It’s a long haul and you’ll need to be patient. Keep reminding yourself that it’s only temporary and don’t lose sight of the ultimate goal of restored health. It can be a tough slog but the reward is definitely worth it.
Laugh: I’m a firm believer that laughter is the best medicine. That, and heavy doses of methotrexate. It’s important to stay upbeat and enjoy the lighter side of life during treatment. Whether that’s reading the funnies, watching a comedy or downloading “footballs-to-the-crotch” videos off of YouTube, laughter will do the body good.
Set boundaries: I have a hard time saying no. But learning to say no is very important. People want to talk and visit because they care and want to be there for you. But you need to be okay with being selfish now and then when you’re not feeling up to company. Visitors are awesome but can also be exhausting and you need to stay well rested so your body can do its thing.
Journal/Share: This tip is related to the one about getting out of your head. A great way to process the jumble of thoughts ricocheting inside your skull is to talk them out or put them to paper. I’m terrible at sharing my thoughts and feelings. But putting them “out there” gives them form and allows you tackle issues more effectively.
Stay positive: Attitude is everything. Surround yourself with positive people and avoid the negative ones. Read biographies about people who inspire you. Keep positive quotes posted around the house. Keep a gratitude journal and remind yourself of all the wonderful little things going on in your life.
Be disciplined: There were a lot of times during treatment when I would have preferred to just stay in bed. The chemo made me extremely fatigued. But it’s important to be disciplined about doing your part in getting healthy. This includes things like taking your medication on time, drinking plenty of fluids even if you don’t feel particularly thirsty, trying to eat decent amounts of food to keep your strength up, doing light exercise if your doctor recommends it and keeping all your appointments.
These things worked great for me. As I said though, everyone is different and will have their own ways of dealing with difficult situations. So here’s to my unconquerable friend, Myrta. I’m right here in your corner and know that you’re going to do great!"
Time to get going. I will see you around, on the other side of the first chemo, on the way to Santiago!
Tips for navigating chemotherapy/cancer treatment
Posted on April 26, 2011 by joshmartinink
"My friend and mentor, Myrta, was recently diagnosed with breast cancer. It was an upsetting blow to be sure. But the doctors are optimistic that Myrta will be able to beat it and that’s very comforting to hear. Optimism aside, she still has a long road of chemotherapy and radiation treatment ahead of her and that’ll be tough. Her treatment starts this Thursday and will be ongoing throughout the Spring, Summer and into the Fall.
I remember shortly after I had been diagnosed with leukemia a few years back, Myrta called me. “I hear you’re unconquerable,” she said over the phone in her usual inspiring and reassuring way. Those words filled me with amazing strength. Many of you will remember how “unconquerable” became my mantra and rallying cry. Now you know where that came from!
Myrta’s an incredible woman and I know her own unconquerable spirit will serve her well in this journey. In situations like this I always feel helpless. But having gone through a lot of chemo and radiation myself, I hope that I can offer some insights from my own experience that might be helpful. Everybody’s experience is different but I hope there are some useful nuggets in the 10 tips I’ve listed below.
On top of being one of the kindest, most sincere and compassionate people I know, Myrta is also a very talented writer and has been blogging about her experience with breast cancer. Click here to check out her blog and be sure to leave some words of encouragement.
Josh Martin's Tips for navigating cancer treatment
Visualize: In one of Myrta’s recent posts, she talks about how she pictures herself as a boxer getting ready for a big fight. It’s interesting because that was definitely the same imagery that I used while I was undergoing treatment. Visualization is a great technique and really helps focus your energy on a mental image. I’m a big Rocky fan, so I’d often picture myself like him in the ring against a big opponent. And like the Rocky films I knew that round after round of chemo I was going to take a beating. But like the Italian Stallion, I just needed to keep on swinging and I’d win in the end. I also found it helpful to use less violent imagery. I’d visualize myself in the most tranquil and happy place I could conjure. For me it was at the end of a dock next to a cottage on a warm summer day. Just sitting there in the sun; completely healthy and at peace.
Get out of your head/distract yourself: Oh man, this was a big one for me. I have a WAY too active imagination and getting caught up in my thoughts can be very dangerous. If you find yourself brooding on things or letting your imagination run wild, it’s time to get out of your head. Call up a friend, watch some TV, go for a walk, do a crossword—a lot of time you can be your own worst enemy.
Stay off the Internet: Another big one I learned the hard way. In my attempt to be as prepared as I could be, I spent a lot of time doing research online about my disease. BE CAREFUL! The internet is a minefield of misinformation and out-dated material. That’s not to say you shouldn’t try to be as informed as possible (see the next tip). It just means, don’t get carried away, choose your websites wisely and remember that no two cases of cancer are the same and everybody’s experience is different.
Be your own advocate: My doctors and nurses were awesome while I was undergoing treatment. But the reality is that they’re very busy people with too many patients and as a result they may rush through explaining things to you or throw around terms that go over your head. You have to be your own advocate. Insist that they explain things if you don’t understand something. Bring a list of the questions you want to ask and make sure they take the time to answer all of them. And also remember: doctors aren’t mind readers. It’s up to you to bring to their attention how you’re feeling and the concerns you have.
Focus on the big picture: Keep your eye on the prize. It’s a long haul and you’ll need to be patient. Keep reminding yourself that it’s only temporary and don’t lose sight of the ultimate goal of restored health. It can be a tough slog but the reward is definitely worth it.
Laugh: I’m a firm believer that laughter is the best medicine. That, and heavy doses of methotrexate. It’s important to stay upbeat and enjoy the lighter side of life during treatment. Whether that’s reading the funnies, watching a comedy or downloading “footballs-to-the-crotch” videos off of YouTube, laughter will do the body good.
Set boundaries: I have a hard time saying no. But learning to say no is very important. People want to talk and visit because they care and want to be there for you. But you need to be okay with being selfish now and then when you’re not feeling up to company. Visitors are awesome but can also be exhausting and you need to stay well rested so your body can do its thing.
Journal/Share: This tip is related to the one about getting out of your head. A great way to process the jumble of thoughts ricocheting inside your skull is to talk them out or put them to paper. I’m terrible at sharing my thoughts and feelings. But putting them “out there” gives them form and allows you tackle issues more effectively.
Stay positive: Attitude is everything. Surround yourself with positive people and avoid the negative ones. Read biographies about people who inspire you. Keep positive quotes posted around the house. Keep a gratitude journal and remind yourself of all the wonderful little things going on in your life.
Be disciplined: There were a lot of times during treatment when I would have preferred to just stay in bed. The chemo made me extremely fatigued. But it’s important to be disciplined about doing your part in getting healthy. This includes things like taking your medication on time, drinking plenty of fluids even if you don’t feel particularly thirsty, trying to eat decent amounts of food to keep your strength up, doing light exercise if your doctor recommends it and keeping all your appointments.
These things worked great for me. As I said though, everyone is different and will have their own ways of dealing with difficult situations. So here’s to my unconquerable friend, Myrta. I’m right here in your corner and know that you’re going to do great!"
Time to get going. I will see you around, on the other side of the first chemo, on the way to Santiago!
Monday, May 2, 2011
The Waiting is Almost Over for this Planetary Pilgrim!
I am writing this on Monday night, May 2nd. We have already voted, and are getting ready to watch the results of the Canadian Federal Election. Tomorrow, my daughter Ioanna will arrive to be with us during my first chemo treatment, on Wednesday, May 4.
There was a week's delay in starting this treatment, due to respiratory congestion and a pretty strong reaction to an antibiotic which had been prescribed almost a month ago. I have been coughing pretty violently, and suffered from a very bad case of urticaria (hives). From now on I shall stay away from Keflex, and all related meds!
Am I ready? Yes. Am I ready? Yes. Am I ready? Well, I am a bit apprehensive, yes, I will admit. But I shall make it, with the hard work of the Grand River Hospital team, the ministrations of my friend Marion, the prayers and support of friends and family and my daughter and David. They will come with me to the first session.
After that, I am looking forward, from time to time, to going with other friends. I look forward to spending two hours with a few special friends while the chemo is administered. What shall we talk about? I have no idea, but I look forward to spending quality time with them. How often do we get to do that?
The post immediately below this one, is an interview with Dr. Sheela Basrur, who led us through the SARS crisis in Ontario some years ago. Later, when she needed treatment for the cancer she was diagnosed with, she came "home" to K-W for treatment and support. Dr. Basrur did not make it, but she remains a shining example of compassion, courage and grace under pressure. May her memory be eternal.
This coming week we shall celebrate Nursing Week. What an amazing group of professionals they are! I am posting this interview as my tribute to all the nurses I have known, both friends, family and colleagues at St. Mary's Hospital and elsewhere. To all of them, thank you! Thank You! Thank you!
And now, it is time I got going, but we will see you around, soon, on the way to Santiago!
There was a week's delay in starting this treatment, due to respiratory congestion and a pretty strong reaction to an antibiotic which had been prescribed almost a month ago. I have been coughing pretty violently, and suffered from a very bad case of urticaria (hives). From now on I shall stay away from Keflex, and all related meds!
Am I ready? Yes. Am I ready? Yes. Am I ready? Well, I am a bit apprehensive, yes, I will admit. But I shall make it, with the hard work of the Grand River Hospital team, the ministrations of my friend Marion, the prayers and support of friends and family and my daughter and David. They will come with me to the first session.
After that, I am looking forward, from time to time, to going with other friends. I look forward to spending two hours with a few special friends while the chemo is administered. What shall we talk about? I have no idea, but I look forward to spending quality time with them. How often do we get to do that?
The post immediately below this one, is an interview with Dr. Sheela Basrur, who led us through the SARS crisis in Ontario some years ago. Later, when she needed treatment for the cancer she was diagnosed with, she came "home" to K-W for treatment and support. Dr. Basrur did not make it, but she remains a shining example of compassion, courage and grace under pressure. May her memory be eternal.
This coming week we shall celebrate Nursing Week. What an amazing group of professionals they are! I am posting this interview as my tribute to all the nurses I have known, both friends, family and colleagues at St. Mary's Hospital and elsewhere. To all of them, thank you! Thank You! Thank you!
And now, it is time I got going, but we will see you around, soon, on the way to Santiago!
Monday, April 25, 2011
It is Time for Planetary Pilgrims to Venture out on the Road Again
Eight years ago, during this week, I was getting ready to embark on a solo pilgrimage to Santiago de Compostela. I was 59 years old, and wanted to so domething to mark the end of my fifties. I also wanted to support the Capital Campaign of the K-W Multicultural Centre with a pilgrimage that would gather sponsorships, so that the Centre could buy a new building.
The actual walk took one month of walking in Spain, during May of 2003. Mornings were cool, afternoons comfortable. There was sunshine almost every day. I travelled alone, though I was never alone. There were always other fellow pilgrims on the trail.
My preparation consisted mostly of walking around Kitchener Waterloo, to break in my boots, and to get used to my backpack. Since I intended to take no more than 11 pounds (including a bottle of water that would get lighter as the day wore on), the planning of what to take was almost as important as the actual walking preparation.
What to take with you, when you are going to be walking every day, and sleeping in a different shelter every night, with up to sixty other people? I took a hat. A strong hiking pole to hold on to. Very few light, easy wearing items of clothing that would dry quickly, a comfortable pair of sandals for evenings, a long dress that would serve both as sleepwear and relaxing tunic after a long day of walking. I also took a cotton shawl that served as a privacy curtain around my bunk, and as a quick-drying towel. I took no cosmetics, except for skin lotion, sun screen and a few other health products. I cut my hair very, very short, so that I would not need to carry a comb or a brush. I took my father's little Book of Common Prayer. A map. My bank card and passport. In total, I carried eleven pounds, including a full bottle of water. I packed and unpacked, wound and rewound the clothing; I added, took away, and packed again until I was ready.
Later this week I am embarking upon a more taxing pilgrimage - an internal pilgrimage through the land of Chemotherapy and Radiation. I expect that this trek will take me, sometime in the middle of autumn, to a healthy resolution of the breast cancer that I discovered this winter.
What shall I pack for this awesome journey? How to prepare? I am thinking about this today, and so my post today is written as a review of what I might need to "pack". I am taking out my bright yellow backpack to carry my things to the hospital for treatments. It will serve as a connection to the earlier journey. My hat and a hair piece or a scarf will protect my head once I shave off my grey curls. Easy clothing, some of it made of silk, to be comfortable and soft. Precious few cosmetics, though I hope to carry and apply my Burt's Bees colour lip gloss every day!
I am walking alone this time, but it is a different "alone" from my earlier pilgrimage. Then I was physically alone, away from my family and home, though always in the presence of other pilgrims. This time I am alone in the sense that I alone will receive the treatments. It is my own body that has been affected,it will be my body that will experience both the blessing of healing and the worrisome side effects of the chemotherapy.
My previous pilgrimage experience put me in contact with dozens of local residents who decided to support my project. My church friends supported me and my family walked in spirit with me every step of the way.
Again this time, I have been overwhelmed with the support of friends, acquaintances and family from near and far. My sister, daughter and her family are here spending this beautiful Easter weekend with David and me. I visited family in Toronto over the weekend, our friend John calls David from time to time to check in. Friends have prepared meals that will come in handy after the treatment starts. My daughter, son-in-law, my grand children and my sister are planting things in the garden. My children's friends come over to visit and share their experiences, books,and music with me. They and many others are getting ready to set off with me on this amazing pilgrimage toward healing.
I was saying to David the other day that I imagine myself as a boxer, getting ready to go into the ring. The other people around are my trainers making sure that I make the right moves, protect myself, and get the job done. And by God, we shall get the job done, no question about that!
Why have I been keeping this blog journal? Why have I decided to make my encounter with cancer so open? Because I know how many people in our communities are shocked when they are diagnosed with cancer. It is still seen by many as a horrible curse, one that should not be talked about. And so, people suffer in silence until near the end. Even when friends know what is going on, they maintain a poignant silence: if it is not mentioned, then perhaps it is not happening. "If we don't tell the patient then she will not despair."
My decision to make my condition known stems from a desire to do whatever I can to stress that cancer can be beaten. It is an unfortunate thing to have happen, it is an unplanned interruption, it is frightening, but it is part of the human condition. And when these things happen, humans support one another, and visit each other, and bring a book, or send a card, or make a casserole or a prayer shawl, or a loaf of bread. In so doing, we offer comfort and we join the great company of pilgrims who are journeying to health and to healing.
As I write this, my grandkids are having a gardening blitz in our back yard, together with their parents and my sister. They are planting strawberries, onions, garlic, calla lilies and sunflowers.
It is time I joined them. I want to take some pictures of the kids, and gather more good thoughts and memories for the road ahead. And we will see you around, looking forward to sunflowers in the autumn, on the way to Santiago.
The actual walk took one month of walking in Spain, during May of 2003. Mornings were cool, afternoons comfortable. There was sunshine almost every day. I travelled alone, though I was never alone. There were always other fellow pilgrims on the trail.
My preparation consisted mostly of walking around Kitchener Waterloo, to break in my boots, and to get used to my backpack. Since I intended to take no more than 11 pounds (including a bottle of water that would get lighter as the day wore on), the planning of what to take was almost as important as the actual walking preparation.
What to take with you, when you are going to be walking every day, and sleeping in a different shelter every night, with up to sixty other people? I took a hat. A strong hiking pole to hold on to. Very few light, easy wearing items of clothing that would dry quickly, a comfortable pair of sandals for evenings, a long dress that would serve both as sleepwear and relaxing tunic after a long day of walking. I also took a cotton shawl that served as a privacy curtain around my bunk, and as a quick-drying towel. I took no cosmetics, except for skin lotion, sun screen and a few other health products. I cut my hair very, very short, so that I would not need to carry a comb or a brush. I took my father's little Book of Common Prayer. A map. My bank card and passport. In total, I carried eleven pounds, including a full bottle of water. I packed and unpacked, wound and rewound the clothing; I added, took away, and packed again until I was ready.
Later this week I am embarking upon a more taxing pilgrimage - an internal pilgrimage through the land of Chemotherapy and Radiation. I expect that this trek will take me, sometime in the middle of autumn, to a healthy resolution of the breast cancer that I discovered this winter.
What shall I pack for this awesome journey? How to prepare? I am thinking about this today, and so my post today is written as a review of what I might need to "pack". I am taking out my bright yellow backpack to carry my things to the hospital for treatments. It will serve as a connection to the earlier journey. My hat and a hair piece or a scarf will protect my head once I shave off my grey curls. Easy clothing, some of it made of silk, to be comfortable and soft. Precious few cosmetics, though I hope to carry and apply my Burt's Bees colour lip gloss every day!
I am walking alone this time, but it is a different "alone" from my earlier pilgrimage. Then I was physically alone, away from my family and home, though always in the presence of other pilgrims. This time I am alone in the sense that I alone will receive the treatments. It is my own body that has been affected,it will be my body that will experience both the blessing of healing and the worrisome side effects of the chemotherapy.
My previous pilgrimage experience put me in contact with dozens of local residents who decided to support my project. My church friends supported me and my family walked in spirit with me every step of the way.
Again this time, I have been overwhelmed with the support of friends, acquaintances and family from near and far. My sister, daughter and her family are here spending this beautiful Easter weekend with David and me. I visited family in Toronto over the weekend, our friend John calls David from time to time to check in. Friends have prepared meals that will come in handy after the treatment starts. My daughter, son-in-law, my grand children and my sister are planting things in the garden. My children's friends come over to visit and share their experiences, books,and music with me. They and many others are getting ready to set off with me on this amazing pilgrimage toward healing.
I was saying to David the other day that I imagine myself as a boxer, getting ready to go into the ring. The other people around are my trainers making sure that I make the right moves, protect myself, and get the job done. And by God, we shall get the job done, no question about that!
Why have I been keeping this blog journal? Why have I decided to make my encounter with cancer so open? Because I know how many people in our communities are shocked when they are diagnosed with cancer. It is still seen by many as a horrible curse, one that should not be talked about. And so, people suffer in silence until near the end. Even when friends know what is going on, they maintain a poignant silence: if it is not mentioned, then perhaps it is not happening. "If we don't tell the patient then she will not despair."
My decision to make my condition known stems from a desire to do whatever I can to stress that cancer can be beaten. It is an unfortunate thing to have happen, it is an unplanned interruption, it is frightening, but it is part of the human condition. And when these things happen, humans support one another, and visit each other, and bring a book, or send a card, or make a casserole or a prayer shawl, or a loaf of bread. In so doing, we offer comfort and we join the great company of pilgrims who are journeying to health and to healing.
As I write this, my grandkids are having a gardening blitz in our back yard, together with their parents and my sister. They are planting strawberries, onions, garlic, calla lilies and sunflowers.
It is time I joined them. I want to take some pictures of the kids, and gather more good thoughts and memories for the road ahead. And we will see you around, looking forward to sunflowers in the autumn, on the way to Santiago.
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