Monday, July 6, 2009

cancer - my daughter . . . cont'd


One week after diagnosis of a carcinoid tumor in her bronchial tube, my daughter had a biopsy of the tumor, done by means of a bronchoscopy. Three weeks after initial diagnosis she had her first appointment with the surgeon and received the list of tests she had to have before surgery could be performed. I accompanied her to most of these tests.



We have a lovely relationship and a similar sense of humor. In waiting rooms we would vacillate from black humor about the situation to serious discussions of what will she do if . . . . ? how much should she tell her children . . . ? etc. Perhaps it was our anxiety, but I recall a lot of irreverant giggling going on in many of the waiting rooms. It was during the time of the US presidential election and we distracted ourselves talking about Sarah Palin's latest display of hubris and ignorance. I wonder if Palin knows how much comic relief she provided for those of us in distress in the Fall of 2008? It often amused us that nurses and technicians expected that I would be the patient and that my daughter was simply there to accompany her mother as the patient. You could see people were surprised that someone so young and healthy looking could be the patient. Well, why not, we were too!



The surgeon explained to Hope that carcinoid tumors are extremely rare. Carcinoid tumors in the bronchial tube even more rare than that - and even more rare in a person of her age (36). Carcinoid tumors originate from the neuro-endocrine system and are usually found in the gut. There are very few experts in this type of cancer in the world. The main expert was in Sweden, and guess what - there is one (a neuro-endocrinologist) in our city. Hurrah! These tumors are strange in that they emit hormones that are the cause of many other conditions - from high blood pressure, diarrhea, bladder infections, to cardiac arrest, etc. (My daughter had been suffering from chronic urinary tract infections for almost a year. Who knew that they were caused by a cancerous tumor in her lung??? How weird is that?) From what they know now, this type of cancer does not respond to chemotherapy nor to radiation. So a difficult surgery was all Brooke had to face. Her surgeon told her that this was a difficult surgery for both surgeon and patient. There was a good possibility that if the tumor could not be removed without removing a large part of the bronchial tube, she would have to have her entire (so far healthy) lung removed.



Enough of the technical. If you are like me, you are more interested in the human reactions to trauma, tests, challenges. I am blogging to share my reactions, not Brooke's, although some of hers will have to be revealed to understand mine. I have her permission to talk about this, but she did ask that her anonymity be respected. Apart from that, I do not want to infringe on her experience, or even to presume that I can ever know what it was like for her in her deepest, darkest moments. I know that even though we talked openly about many things, she was protecting me on some level. She gauged my readiness, and slowly revealed the frightening things her web research was revealing about carcinoid tumors and the carcinoid tumor syndrome. She was learning things that many doctors do not know. In the meantime, I was wishing I could step in and be the patient instead of her. But it is one of the existential givens of life, that no matter how we are loved, no matter how many people support us, we must face our pain, distress, fears and mortality alone. No one can step in and do it for us. I truly wanted to. I could not.



Aaaah, and thus another of my fantasies . . . busted. Somehow, in spite of the work I do, my education, etc. I discovered that I harbored "stories in my head" that if I worked hard enough, if I was creative enough, if I did enough research, I could keep my children from suffering. Such grandiosity! Yes, these fantasies were more or less unconscious - certainly unacknowledged - so it was a shock to be confronted with them. (Of course I knew all this intellectually - but it is a whole different thing to have to live it.) Such helplessness! I wanted to intervene. I wanted to turn back the clock. And I oh so wanted to do something to prevent my grandaughters from perhaps losing their incredible mother. I wanted to make it all different. I could not.



What illusions had I been operating from? I had accompanied clients with serious, even terminal, illnesses. I had sat with them as they expressed their pain, fear and distress. Did I put up some wall and think that since I was a helper, I or my loved ones would somehow not be afflicted? Did I believe on some level that I could ward off accidents and illnesses for my children? What planet was I living on? I could do nothing to change the course of events for anyone - not even my daughter. I had to come to terms with the fact that what I did for my clients was all I could do for my daughter - I could attend, I could listen, I could accompany, I could empathise, I could problem-solve with her, I could provide a hand and a shoulder, and I could love her as perhaps I had never loved her before. But spare her suffering? I could not.



My mind fought against this. Maybe I could find the magic cure. I did research on the internet. I told her about the baking soda cure (even going so far as suggesting, mostly tongue in cheek, that we could fabricate a joint laced with baking soda that she could smoke to get baking soda around the tumor to dissolve it- WHAT!!??); the apple cider vinegar cure; I bought her guided imagery CDs; I wrote out a visualization geared to her specific illness; I, I, I . . . I groped in the wind to catch bubbles of hope. Hope was so patient with me. She listened. Sometimes she said she would try things, sometimes she just smiled, finally she told me that that was not how she wanted to approach her situation. I began to understand that I was doing these things as much for myself as I was for her. It was my need to feel I was doing something. I had to let go of my attachment to "doing", "solving", or "fixing". Something in all my training and studies should be able to help me release this need to do something. I floundered, I reviewed, I thought, I remembered and I returned to IT. I knew where IT was on the bookshelves in my office and IT was the only thing that helped me get through all that was to transpire. I did not want IT to be the answer. I had not liked IT when I first read it. I had a lot of resistance to IT. At the same time, for some strange reason I knew IT was exactly what I needed. I wanted to ignore IT. I could not.



(For those who have asked, my daughter survived her surgery with flying colors and after 5 months of recovery and pain medication went back to work. Recently, however, she decided to work only part time as she is dealing with some nagging symptoms (probably from carcinoid syndrome), experiencing some fatigue and going through another battery of tests. She is in good spirits and continues to be the finest mother I have ever seen!)



More about IT and how it helped me/us get through the most intense part of this crisis, in an upcoming post.

5 comments:

  1. This is so fascinating to me. I keep replacing Brooke with me, and I replace you with my family members. It is such an interesting thing how we all try to protect each other from the truth that we are facing.

    For me, all that I needed my family to do was to BE THERE! I just wanted them with me as I went to appointments, to treatment, to the E.R., to test after insufferable test. I wanted them to just sit with me as I received a blood transfusion, and then turned around and had the lab withdraw blood! And I needed to "secretly" document the medical side of my journey for them to read if I didn't survive. I needed them to know that everything possible had been done for me.

    It sounds like you did exactly the things that a cancer patient needs from those they are closest to. You were THERE with her!

    I am so grateful to hear that she is doing okay. One day at a time, as the saying goes!

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  2. Bonnie: what a beautiful and beautifully written documentation of your experience as a mother. I'm a mother of a daughter, too--she's still a child--and I find what you wrote here sort of fear-inducing, but mostly, mostly--it's encouraging. If I know I can't prevent her from suffering, maybe I can relax a tiny bit into just being her mother, support, encourager, and caretaker. I learn SO much from other mothers. I can't thank you enough.

    And I appreciate the generous comments you've left me recently at my blog.

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  3. Audrey:

    It is so important for family members to know what you say in your comments. Just be there. I wanted to describe all the vital energy I wasted into trying to help, change or fix things. Just be there - as current and former patients like Audrey attest. That's all and that's enough.
    Thanks so much for your comments.


    Sallmandy:

    Thank you so much for your comments. I hope you will come back for the next installments because you will see how we learned to move past our fears. I wanted to share my desperation and fear - to demonstrate how unskillful and unhelpful it was. Please don't absorb the descriptions of my fear - I had to share them to show the power of the tool I used to move beyond them. Stay tuned!

    Bonnie

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  4. Your words are exactly what I feel about my own children. We wish we could take on their illnesses and their troubles. Our daughter was recently diagnosed with endo and we immediately did everything that you did for yours...research, looking for different cures..the whole ball of wax. In the end, we must be there for them and that is truly what they want from us..love and care.

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  5. Good to read the update. We are so powerless sometimes. She must be so proud of you!

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