December 2, 2011
Last night I dreamed that I could not recognize your faces. I tried to recall haircuts, eye brows, eyes or other features, but I could not make the connections. I realize this is a shadow of the fear I feel when I look in the mirror and a face I hardly recognize looks back at me. That changed face matches the life I barely recognize and reflects the apprehension I now live with, day to day.
I sailed through brain surgery with little more than the loss of my hair - which had been my pride and joy. I was so relieved to be divested of vertigo, nausea, headaches and loss of motor control, that I felt better than I had in many months, and when the results came back on the biopsy of my brain tumour and I asked one of the surgeons about my prognosis, I rejected the first thing he told me - which was that statistically, I had 40 weeks to live. He added that he'd had a patient with a similar condition who was, as far as they could see, cancer-free, five years later. That would be me, I decided. Cancer-free in five years.
Now I'm not so sure that wasn't denial.
When I first met Dr. B, I told him I didn't want to see my death sentence on my Doctor's faces - but that I wanted, (perhaps paradoxically I think now) to be told the truth.
As it is, I'm not at all sure that I know the truth, or perhaps more accurately, I do not know the possibilities.
I thought, when I began chemo, that the idea was to render the tumour in my lung harmless. When I met with Dr. R., he told me that surgery would be performed if there was anything left after the chemo - that he would remove whatever was left and clean up the edges. Now radiation has been added and according to Dr. B., that is to stop the tumour from continuing to spread. Dr. M. tells me that there is no chance the tumour can be rendered benign. There is to be no surgery. Or at least, this is what I think I'm hearing.
And I have a hard time not hearing my death sentence in your answers and in your silences.
So, without asking you to predict, I am asking you to use your experience, medical knowledge and your intuition – to try to answer some questions:
What exactly is the chemo and radiation expected to accomplish? Given that I face the possibility of other complications arising from both treatments, some of them serious and possibly permanent, is this first round of treatment and the radiation on my brain administered in the hope of giving me the possibility of a significant period of remission - a year, two years or more? Or do you believe, collectively or individually that even with this treatment, it is likely I have less than a year?
Dr. B. tells me there is a chance that the cancer has spread to other areas not yet detectable on scans. Emotionally, this is far cry from the hearing, to my great relief that nothing else showed on the PET scan results.
Supposing that the cancer has spread, am I looking at repeatedly facing chemo and radiation treatments?
A clearer picture of the possibilities would greatly help me come to terms to the emotional impact of all this. As it is, I barely recognize my life and have no idea what lies ahead. If I am looking at death sooner than later, I would like the opportunity to try to make peace with that. If the cancer goes on spreading, I have decisions to consider - and I need to know what will happen if I refuse further treatment. I need to know what my death might look like and what can be done for me in a palliative care setting.
If there is any chance of a decent length of remission, I need to know that too. As you can imagine, it is difficult to keep a positive attitude when so little I am being told seems to indicate a reason for hope.
I have always been a fighter and I am willing to do what I have to survive - providing that I can survive with a decent quality of life and most of my faculties intact.
If you feel that there is any hope for that, I really need to hear it from you. Without asking you to guarantee anything and knowing that you have no crystal ball to consult, but based on your experience, I very much need to know what the various outcomes might be. I can hear whatever you can tell me, even if the news is bad, provided it is told to me in a humane and not simply clinical fashion.
I am sending this letter to you in the hope that you will have a little time to consider my questions – rather than blindsiding you during the limited time we have for consultation.
In closing, I would like to thank you. I know that you are all doing your best for me and I am grateful to be in skilled hands. All I ask is for a little more clarity and for you to trust that I need this in order to be able to handle the difficult life changes I am experiencing.