Monday, July 6, 2009

cancer - my daughter - WHAT ???


She must have sensed something big was going to happen. She said she would go into the doctor's office alone. She did not want to be distracted by someone else's concerns or questions. It seemed like she was in there forever. When a sense of foreboding quivered in my body, I shifted position and tried to shake it off. Finally she emerged. Our eyes met across heads in the waiting room and her eyes popped into saucers which signalled something very serious had been discussed. Every cell in my body began to brace itself for what I would hear next. I felt so contracted, tight and brittle that I was afraid I might shatter when I heard the words that matched the look on her face. I willed myself to be strong. I had to be strong for her.

Last September, 2008 my daughter was 36, in the prime of her life, in a wonderful new relationship, and in seeming good health. (She is a separated, soon to be divorced, mother of two little girls.) She had noticed a "wheeze" when she breathed for the last several months. Her GP sent her to a respirologist and tests were done. We all assumed it was something to do with allergies or asthma. It was a CAT scan that revealed a carcinoid tumor in her bronchial tube, creating a 98% blockage. I described some of her hospital experience in my previous post about universal health-care coverage in Canada.

To protect her identity, I will call my daughter Hope. She walked briskly toward me, we hugged and she told me in urgent-sounding whispers that she had a carcinoid tumor and the only way to get rid of it was with major thoracic surgery. Looking back on this scene it is amazing to me how quickly the ego defense of denial came into play for me. It was as if walls came down in my consciousness, allowing only the words "tumor" and "surgery" to penetrate. As we started to walk down the long corridor of the hospital, I noticed the doctor standing in his doorway watching, I assumed, to make sure she had someone with her. I recall thinking what a sensitive man he must be - instead of realizing that his being there, watching, was also an indication of the gravity of Hope's situation.

After she explained what she had heard from the doctor, we walked in silence to the car - literally just putting one foot in front of the other. The hospital is built on the side of a mountain in the middle of the city, and we had dozens and dozens of outside stairs to climb. We did so in silence. I recall having the thought: "why do they give this kind of tumor the name "carcinoid" - it makes it sound so much like cancer . . . what a silly thing to do - it must scare a lot of people." The denial defense doing its work - protecting me from what was still too threatening to take in. Seems I had to absorb the information one bite/byte at a time. I was still digesting "tumor" and "major thoracic surgery", and my body/mind/heart could not take in the word "carcinoid" as meaning a type of cancer - even though it is obvious. It was just too much to metabolize at once.

Hope soon realized that I was not letting the word "cancer" into my consciousness. She is so wise and sensitive - she allowed me time to come to terms with what I could, as I could. Only much later that day, did she say, "Mom, it IS cancer". I felt like the earth opened up under me, and assumptions I didn't even know I had began to crumble in the quake . . . "cancer" . . . "my daughter" . . . " how can that be . . .???".

Did you ever read Michael Cunningham's book "The Hours"? I read it back in 1999. It takes the lives of three women in different time periods and weaves them together - Virginia Wolfe, a Mrs. Brown, and Clarissa Vaughan (who mirrors the life of Wolfe's character, Mrs. Dalloway). A paragraph in this book reached out and hooked itself into me back then, demanding that I try to understand why it riveted me so. Mrs. Brown is now old and goes to Clarissa's house and there she sees Clarissa's daughter asleep in a chair. The text says: " . . . In sleep she sits with an air of surprising dignity, even authority, foursquare, shoulders relaxed and both feet on the floor, head bowed discreetly forward, as if in prayer. At this moment she could be a minor goddess come to attend to mortal anxiety; come to sit with grave, loving certainty, and whisper, from her trance, to those who enter, It's all right, don't be frightened, all you have to do is die." (bold mine)


It's like when you click "I accept" to terms of agreement when you download some new function on your computer. If you are like me, you don't read the terms, you kind of assume they are fair, equitable and appropriate and quickly click your acceptance and move on. That paragraph in The Hours made me realize the imperative (the terms) placed on us all just by the fact that we are alive on planet Earth, that . . . "all we have to do is die" . . . I needed to come to terms with this on a more profound level than I had - and reading those words initiated that process. I did not feel like I had yet agreed that the terms of life included death. I had never clicked "I agree" to "all you have to do is die"! There are many reasons for that, that I will expand upon at some other time. Suffice to say, I knew I had deeper levels of work to do. I began to think concretely about my death and was drawn to read many books on the subject to help broaden my perceptions of death. I did this with regard to my own demise. Somehow I operated under the protective illusion that I would have to deal with my death or the death of my husband. Never did I think I would have to confront the possibility that one of my children could die before me. Now . . . illusions were shattered and in the next few months I railed and wailed (usually in the privacy of my bathroom or walk-in closet) about this possibility I had been naive enough to never contemplate. It was Hope, who helped me, inch by inch absorb all this new information and slowly come to terms with the new reality of her life - not jumping ahead catastrophizing, but not denying the gravity of her situation either. I could not have had a better teacher/companion for this process.

More about how this unfolded in my next post.

8 comments:

  1. Thank you SO much for this post! It helps me to understand the journey that my family in general, my Mom in particular, travelled when I received my cancer diagnosis. I knew that they felt fear, I knew that my Mom felt confusion for exactly what you said - how does a child die before the parent? I knew that my sister-in-law went through anxiety and fear when I was the person spending a long time in the examining room. But you give me clarity as to the emotion that is experienced by my loved ones. Thank you, from the bottom of my heart. Please keep writing - you help me and other cancer patients as well as the family members of those of us who have heard the dreaded words, "You have cancer."

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  2. You describe this so brilliantly Bonnie. It is one thing to be the person diagnosed with cancer, it is quite another to be the loved one, no less the mother of the person diagnosed.

    My mother and sister both pre-deceased me at early ages (68 and 39). I can only image how they would have reacted to my breast cancer. Much like you are with your daughter. Concern, fear, early denial, and love. But most importantly the acceptance that this is what is and this is what we must do...all of which is surrounded by that love.

    We do know when it's going to be something big as you said. My best friend came with me the day I got my results...I didn't want my husband or children there. I knew what I was going to hear. My friend was in denial and kept saying it would be nothing. I went in to the doctor's office alone, I came out with the saucer eyes to communicate to her that it was in fact something "big".

    I helped everyone close to me come to accept what life had launched into our path and it was my own acceptance that helped.

    I love your strength and your daughter's strength. That, faith, spirit and determination along with basketfuls of hope are what get us through. ♥

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  3. Audrey:
    Thanks so much for your comments. It means a lot to know that our experience can affirm and help others. I don't ever want to imply that the loved ones experience could ever equal the primary experience of being the one with the diagnosis. But it is important that it be acknowledged too as you say.
    I sit in awe of the throngs dealing with life-threatening diseases with such fortitude and dignity. We have so much to learn from you all. Thanks again.


    Sherry Lee:

    Thank you so much for sharing. Your comments really touch me. I so agree that the patient's level of acceptance impacts the level of acceptance of family and friends. My heart cries for those who are not yet able to arrive at accepting what is and working with what is . . . It must be a much harder journey.

    Thank you for your encouragement - much appreciated from someone who has been through so much.

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  4. A wonderful piece of writing and a very moving topic. I look forward to the rest. I hope your daughter is well.

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  5. I am sitting patiently awaiting the next post. So very well written and enlightening to feelings from the family of the one involved. I have found through reading Audrey's blog how one person diagnosed with cancer can be so influential to all whom they meet. Your daughter sounds as if she is exactly the same way.
    I am so glad I found your blog!!

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  6. Sandra - thank you - I am writing the rest for you. In general my daughter is well. New test(s) results are due on the 16th.



    Alicia - and I am so glad to have found *your* blog! My daughter is active on sites for and about carcinoid-type cancers - helping folks newly diagnosed bring the most recent information to their physicians, who might not be up on the latest studies. I so appreciate your interest and comments.


    Bonnie

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  7. Both of my parents had cancer. My most important advice is to never go in to see the physician alone. In the stress of the situation people forget or distort what they hear. I have a list of questions (in my book, and on my blog), that I have people ask their doctors, too. I hope this helps someone.

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  8. Bonnie, this post popped up on the "you might be interested" widget under your current post (your interview with Expat from Hell). What an incredible journey this must have been for you last year. I can't tell you how touched I am that you would share your psychological discoveries going through this. I don't think anything is more impossibly frightening than losing one's child.

    Your paragraph following the aha of all you have to do is die is . . . astonishing. I have to let this live in me a while before I read the continuation of your daughter's story. Your daughter helped you in this process. I think I can understand that it would be far more difficult to be the mother, than to the the one with the cancer. A certain focus comes upon you when you are the one with it.

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