Consumed By Her Disease

Unless we’ve personally confronted a cancer diagnosis and experienced the challenges of treatment, none of us really know how we’d react to this horrible situation. I’d like to think that I’d be brave, hopeful, and realistic. I’d also like to think that I would most want to spend time with those I love, but not be a burden to them. Of course I’d be terrified.

seven people share the stories behind their scars on allure.com

I’ve been following the Facebook posts of a young woman (she’s in her late 40s) with advanced breast cancer. She’s had mastectomies, chemo, and much more. The cancer has metastasized to her brain. It appears to also have taken over her life. She defines itself by her illness. She takes countless selfies and videos of her “flat” chest; she rails against her relatives whom she dislikes because they think she’s using her cancer to get attention; she bemoans that she’s all alone in her challenging journey; she’s angry as hell at her cancer, which seems to make her angry in general. 

She shares her physical reactions to her treatment and to the spreading disease in startling detail. The headaches, the vomiting, the excruciating pain. She implores people to accompany her to treatments, to order meals for her, to buy beauty products she likes. 

Now here’s the thing: I abhor the idea of an illness becoming the single focus of my existence. I don’t want to live if I’m spending the majority of my time having my disease treated and then suffering from the side effects of that treatment, unable to work. I wouldn’t want to rely on anyone, especially my grown children, to help care for me because I could no longer do it alone. I would feel like I’m imposing, which has always made me uncomfortable. I wouldn’t want to be consumed with a disease that was literally consuming my body.

I don’t want others to feel sorry or pity for me or feel obligated to help me. I don’t want to whine about the cards I’ve been dealt. I am my mother’s daughter. That’s exactly how she felt, even after having hip surgery at 86 and developing a raging and painful infection throughout her body from diabetes. She’d repeatedly cry out “it hurts, it hurts”-in a state of delirium-but never once asked me or my sisters for help. Of course we tried to help. She died weeks after the surgery. And, I am my father’s daughter. After being diagnosed with metastasized melanoma in 1988, when doctors were the only people who’d heard of melanoma, he never complained and rued his fate. When I leaned down to kiss him in the hospital bed in his den, these were what would be his last words to me, “The one who’s having the hardest time coping with this is Gerilynn (that’s my legal name).” 

Dr. Paul Kalanithi and daughter Cady

I often think about Dr. Paul Kalanithi, a neurosurgeon who died a month shy of his 38th birthday of advanced lung cancer, rare in someone so young. After getting the diagnosis at 36 years old, he didn’t spend the time left to him dying. He spent it learning how to die, and he chronicled what he learned in When Breath Becomes Air, a book that should be required reading for anyone over the age of 18. You ask yourself if you could possibly look at your own impending death as bravely as Paul looked at his, will yourself to do a job you loved, decide to have a child who would never know you. Could you evaluate the meaning of your own life, as it was about to end, as Paul so stunningly assesses his? 

I’ve often said I would end my own life if I knew I had Alzheimer’s. I would not want to wait until I was completely out of my mind and incapable of doing anything on my own, especially think. Cancer is another story, but if it or an equally dreadful disease dramatically changed my life, I don’t think it would be a life I’d want to live.

  • I agree with you Geri. Having worked in the medical field, I have an explicit Living Will and health care proxy. I know what I wan and don’t want and if I have a terminal disease I don’t want to treat it. Even with all that, when my husband had Stage IV lung cancer if I hadn’t been with him 24/7, when he was briefly in the hospital and alarms went off they were all set to take him to the ICU and hook him up but I put my foot down, wouldn’t let them do it and had a DNR order. Fortunately he died peacefully at home. as we wished. Alas I dont have anyone to do that for me. I’m not sure I’d have the courage or means to kill myself – but I hope I still have my senses so I can control my fate when the time comes. On that happy note, have a nice day as they say in San Francisco.
    Bess Heitner

  • Michel Verdi Brown

    I have a friend whose wife contracted ALS, one of the worst diseases known to man, 6 years ago. Within 6 months of diagnosis, she was on a respirator, and completed paralyzed. She cannot talk, eat, move, or breathe on her own. She is completely helpless. Yet he does everything in his power to keep her alive. I wonder if she wants to go on living this way. Since she cannot communicate, there is no telling what she wants. She never signed any papers documenting her wishes before she became very ill. I do not think that I would want to go on living this way. I guess I would not know for sure until I was in the situation. It is incredibly sad and my heart breaks for all those folks who have this terrible disease.

  • miranda gee

    no one wants to be sick or dying. I had cancer too 10 years ago but I made decision to save or prolong my life for my toddler daughter’s sake then. I am healthy now and happy whenever I see my daughter growing up as young teenager. Despite my husband left us, we are happy enjoying our life together. life is too short and enjoy whatever you have. do not look back and moving forward and change when you need one to be better.

  • Lauren Jones

    I agree with you 100%, Geri. I also am not in the throes of such an agonizing and debilitating disease, but, I hope that grace would cover me if I were. I also think that considering how life would be if I were to develop such a scenario is helpful to assess and evaluate – while on the healthy side, what I would want to tolerate and allow my family to tolerate. Heroic measures, drastic measures or an acceptance attitude…which doesn’t mean defeatist. Just MHO.

  • patmal

    Gerri, do you really think people have a choice of wanting/not wanting to live with cancer while they are actually in it? What a terrible way to end your conversation. Not helpful.

    • Geri Brin

      Hello Patmal, The last paragraph reflects how I’D FEEL, not how I expect any other woman to feel. How I feel about my own life has nothing to do with being helpful. Nevertheless, I am truly sorry you feel it was a “terrible way” to end the column. Best, Geri

      • patmal

        Geri, I got you and thank you for responding. I think one thing that can come from this conversation is the absolute need to express in written form what we EACH WOULD WANT. it’s a difficult conversation but very helpful. Thanks