My Story: The Worst or the Best Gift?
-Brenda , North Carolina , USA
On June 20, 2009, my world - my life - began to slip away from me. That was the day I realized that the large, red "bug bite" on my breast was not going away and that, in fact, my breast was getting redder. That was the day I called Nancy, a breast cancer survivor, and asked her if the odd redness sounded like anything to her.
"It sounds like inflammatory breast cancer," she said. "You need to get on the Internet and look it up, and on Monday you need to get to the doctor."
Eight years earlier I had had a breast cancer scare that wasn't a scare at all. I just knew that the lumps in my breast were no cause for concern - that everything was OK. And it was.
But that day when I spoke to Nancy, I immediately knew just the opposite. Everything was not OK. And it would never be OK again. June 21st is my birthday. I thought that either I had just received the worst birthday present imaginable - or the very best one. It all depends on your point of view.
Ten days later I had a confirmed diagnosis. Nancy was right. It was IBC - a rare and very aggressive form of breast cancer with a poor prognosis.
How do I tell the story of the nine months that followed?
There were the normal fears and anxieties that people have when they are told that without prompt medical treatment they will surely die (and soon) - and that even with the treatments they might still die anyway.
There was the attempt to wrap my head around the fact that the treatments being recommended to me were unbelievably brutal - not the kind of things I would voluntarily do to my body in a million, jillion years. But if I wanted to have just a chance to live, I had to submit to them.
There were the anxiety and then the anger at feeling as if all decisions about my care had been decided before I ever walked into the exam room - that I was not really an active part of my treatment team. This was a feeling that was reinforced many weeks later when one of my nurses told me that my oncologist would not even consider doing something that I wanted to discuss with him, because, "after all, he is the captain of this ship." My body, my life, my potential death. But my treatment team did not think of me as being at all in control of what was happening to me - my oncologist was.
There was the need to be constantly vigilant on my own behalf - to make sure that the treatments we agreed upon happened as we discussed them. Sometimes, I wasn't able to be vigilant enough.
There was the anxiety and anger of realizing that the official ASCO surveillance guidelines for detecting the recurrence of breast cancer do not include any kind of blood work or imaging work EVER.unless the patient becomes symptomatic first. The reason for this laissez faire approach is because:
If we did find a recurrence, the official guidelines for treatment say that I cannot be cured. I will certainly die. So why try to find a recurrence early? The goal of treatment, at that point, will be to help me live as long and as comfortably as possible - not to cure me. Upon recurrence, the
Medical Establishment will abandon me to my death.
There was the resurrection of deep, deep traumas I suffered during a six-week hospitalization fifty years earlier, when I had almost died from hepatitis at the age of 5. This monster has raised its head and caught me by surprise. It's made everything much more difficult - including my efforts at survivorship.
But in the end, I have survived. As of March 10, 2010, I had survived both the cancer and the cancer treatments. I responded well (physically, anyway!) to my treatments. I have as good a chance as anyone with my diagnosis of living for many years to come. In fact, I probably have a slightly better chance than many people with my diagnosis.
I found out that the depths of peoples' caring and compassion were surprisingly great. The people who came forward to stand with me in all sorts of ways, at this most horrible time in my life, surprised me. It was a gift I did not expect. It has humbled me.
I was surprised at the people who didn't reach out to comfort me, help me, cheer me, or cry with me. It was a disappointment.
Most of all, I was pushed off-center in my heart and in the deepest reaches of my soul. I have become completely disoriented - a stranger to myself. I am still trying to regain my footing. To figure out who I am, now.
That's what I've been doing since then: Trying to make sure that the news I got on June 20, 2009, turns out to have been the biggest gift I could have received.
On June 20, 2009, my world - my life - began to slip away from me. That was the day I realized that the large, red "bug bite" on my breast was not going away and that, in fact, my breast was getting redder. That was the day I called Nancy, a breast cancer survivor, and asked her if the odd redness sounded like anything to her.
"It sounds like inflammatory breast cancer," she said. "You need to get on the Internet and look it up, and on Monday you need to get to the doctor."
Eight years earlier I had had a breast cancer scare that wasn't a scare at all. I just knew that the lumps in my breast were no cause for concern - that everything was OK. And it was.
But that day when I spoke to Nancy, I immediately knew just the opposite. Everything was not OK. And it would never be OK again. June 21st is my birthday. I thought that either I had just received the worst birthday present imaginable - or the very best one. It all depends on your point of view.
Ten days later I had a confirmed diagnosis. Nancy was right. It was IBC - a rare and very aggressive form of breast cancer with a poor prognosis.
How do I tell the story of the nine months that followed?
There were the normal fears and anxieties that people have when they are told that without prompt medical treatment they will surely die (and soon) - and that even with the treatments they might still die anyway.
There was the attempt to wrap my head around the fact that the treatments being recommended to me were unbelievably brutal - not the kind of things I would voluntarily do to my body in a million, jillion years. But if I wanted to have just a chance to live, I had to submit to them.
There were the anxiety and then the anger at feeling as if all decisions about my care had been decided before I ever walked into the exam room - that I was not really an active part of my treatment team. This was a feeling that was reinforced many weeks later when one of my nurses told me that my oncologist would not even consider doing something that I wanted to discuss with him, because, "after all, he is the captain of this ship." My body, my life, my potential death. But my treatment team did not think of me as being at all in control of what was happening to me - my oncologist was.
There was the need to be constantly vigilant on my own behalf - to make sure that the treatments we agreed upon happened as we discussed them. Sometimes, I wasn't able to be vigilant enough.
There was the anxiety and anger of realizing that the official ASCO surveillance guidelines for detecting the recurrence of breast cancer do not include any kind of blood work or imaging work EVER.unless the patient becomes symptomatic first. The reason for this laissez faire approach is because:
If we did find a recurrence, the official guidelines for treatment say that I cannot be cured. I will certainly die. So why try to find a recurrence early? The goal of treatment, at that point, will be to help me live as long and as comfortably as possible - not to cure me. Upon recurrence, the
Medical Establishment will abandon me to my death.
There was the resurrection of deep, deep traumas I suffered during a six-week hospitalization fifty years earlier, when I had almost died from hepatitis at the age of 5. This monster has raised its head and caught me by surprise. It's made everything much more difficult - including my efforts at survivorship.
But in the end, I have survived. As of March 10, 2010, I had survived both the cancer and the cancer treatments. I responded well (physically, anyway!) to my treatments. I have as good a chance as anyone with my diagnosis of living for many years to come. In fact, I probably have a slightly better chance than many people with my diagnosis.
I found out that the depths of peoples' caring and compassion were surprisingly great. The people who came forward to stand with me in all sorts of ways, at this most horrible time in my life, surprised me. It was a gift I did not expect. It has humbled me.
I was surprised at the people who didn't reach out to comfort me, help me, cheer me, or cry with me. It was a disappointment.
Most of all, I was pushed off-center in my heart and in the deepest reaches of my soul. I have become completely disoriented - a stranger to myself. I am still trying to regain my footing. To figure out who I am, now.
That's what I've been doing since then: Trying to make sure that the news I got on June 20, 2009, turns out to have been the biggest gift I could have received.
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