Today is the 10th of May, 2012. Eight or nine months ago I had finished my Radiation therapy, the Chemotherapy time was becoming a memory, and I was getting ready for a lap around the Eastern Mediterranean with my husband David, and my sister and brother in law. My only concern then was staying out of direct sun, and not overdoing things, for I was a bit weak and tired easily.
As my treatment ended eight or nine months ago I felt no great euphoria, but I was generally content. I looked forward to going back to work at St. Mary's Hospital. Life was good: I had a wonderful husband, two really nice children and the smartest, most beautiful grandchildren that you ever could imagine.
In November I went back to work. My return to work made me feel not only that life was good; life was also normal! On the 24th of November we attended a fund-raising dinner in my honour, sponsored by the Kitchener Waterloo Multicultural Centre. What a magical evening it was! I loved seeing so many people, from different parts of my life, enjoying a fine meal and a good time together.
Christmas was a wonderful time. My son John and his partner came to visit from California. We went to Ioanna's house in Ottawa and enjoyed children's games, a beautiful church service, good meals and laughter, lots of laughter.. For the first time I went out in public without my wig -- my hair was finally long enough!
In January we went to the lake and experienced the winter landscapes so typical of the Addington Highlands region. Life was indeed good.
I started getting a pain in my ribs around the 9th of January. At first my doctor thought it was reminiscent of shingles pain. Soon after that, however, it was clear that the pain was concentrated around several ribs. A bone scan and a bone density test showed nothing suspicious, other than three broken ribs.
In January there were pain killers, waiting for the ribs to heal, a fainting spell in the elevator at work, and all kinds of tests as a result of that. I continued to work, still feeling pain, but taking pain killers and waiting for the ribs to heal.
A trip to Cuba in February allowed us to enjoy the warmth and beauty of a beautiful country and of a fun time in the sun and sea. I was still in pain, but felt the ribs were healing. I kept taking my pain killers.
Easter at the lake with my daughter and her family and with David's sister Carolyn, her husband Gord and their son Malcolm. The holy day brought the enticing aromas of Easter cookies and bread, lamb, ham, and the glorious assurance of new life after the dead winter. Resurrection was all around us, and also the delightful news that Malcolm and Suzanne were expecting a child in the summer.
More pain killers, and more waiting for the ribs to heal. My doctor thought it was time for an x-ray. That showed that the ribs were healing. But why the pain? We discussed metastasis. "I will send you for another scan and if it is what we think it is, I will refer you to Grand River".
It was what we thought. The report states that the considerable change between the January and April scans is "consistent with metastasis". This was followed by another referral to Grand River Cancer Centre. My appointment will be on the 15th of May.
Last week was not an easy one. "Here we go again", I thought. I asked myself "How do I tell my son and my daughter?" It is easy to tell good news, but how do you communicate bad news on the phone? You cannot see facial expressions. Even the voice can play tricks through the phone lines. How to interpret silence at the other end? How do I keep my voice even and steady? How do I keep from chattering idle words? Will I be able to sound balanced and calm, or will my voice break?
Finally, I asked myself, "wouldn't my children prefer me to be honest?" My children are grown up and have a trusting relationship with me. This last question helped me to focus on telling my children the truth, without minimizing the issue. I realized that they would want to know as soon as I know, rather than have me manipulating the truth and the timing. Our conversations last Saturday, while serious and sad, were inspiring, loving and encouraging.
My husband reminds me that I never closed my blog last year. I know. Why didn't I? Was I weary of sounding too over confident? Was I waiting for the other boot to fall? Was it just another example of my inability to process goodbyes?
Today I am thinking, here we go again. How do I deal with metastasis? How do I stop doing the job I love? How? Was this supposed to happen? Why do I feel so sad?
Then I ask myself, "Is it time to take to the road again?" Yes! Again we set off on the road to Santiago. We are not there yet. We walk, get tired, fall, get up, walk some more, take a break, get tired, make the wrong turn, come back again to the main road. The Road to Santiago continues to be a metaphor for life. Now more than ever, walking to Santiago is the best metaphor for this life we are living. Thank you David, for reminding me that I did not close my blog last fall! The way to Santiago continues, this time through the land of metastasis. I invite you to come with me, let us go, the road is waiting; the pilgrimage continues.
... and we will see you again, with the pain and a few broken and cracked ribs, with a few tears now and again, with joy and laughter and hope. It is a different kind of hope this time, but we will always be hopeful, always exultant, moving toward a shining goal. We will see you again, on the way to Santiago!
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Thursday, May 10, 2012
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!
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.
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