Tripping Down the Path of Buried Fears

(Written Sunday August 23, 2009 about 3am)

I am a little over a third of the way through Sherwin Nuland’s book, How We Die. It is a book of compassion and clinical dispassion all at the same time. Even as he describes his friend’s descent into Alzheimer’s disease and the step by step progression of the disease as his friend, in proportionate amounts, digresses, Nuland maintains a clinical distance that allows room for my own grief and fear to surface and fill in the space.

Tears ran down my face unabashedly as I read about his friend and his friend’s wife’s deep love for one another and how occasionally his friend would come to the surface for a few seconds and tell his wife he loves her. My grief and wonder were woven into this man’s very personal story as I remembered an experience that happened during my grandma White’s last years in a nursing home for Alzheimer’s patients: My Aunt Ronnie got a call from the nursing home one day and they said that grandma was missing. They were out looking for her and I think they even had the police looking. Aunt Ronnie went to my grandpa’s house to tell him, and there they were-napping together. He was asleep in his chair and she was asleep in hers. Across the gap, they were holding hands with the romantic music of snoring.

As I read this chapter (which I’m still not done with-I have had to take a break as this subject speaks to my greatest fears) snippets of conversations and personal experiences engulf me: Deb’s dad asking the same question every two minutes; seeing my grandma being fed like a baby (I was ten); listening to my cousin, Tim, a couple of weeks ago as he related the description of his once strong, beautiful independent mother forgetting how to suck on a straw in her last days (Aunt Ronnie, from the earlier story); feeling that my Aunt Annie had been loved so much by her garden that the bees spared her and her family the agony of the quick descent into oblivion that Alzheimer’s was leading her to.

My aunts’ and my mom’s greatest fears were to disintegrate from the brain down, the way their mother did with Alzheimer’s. That fear has become part of my inheritance, even more enveloping than an heirloom quilt. Reading such a clinical description of the various ways that Alzheimer’s first deludes, then destroys, then kills its victims, without even their knowledge, brings out that heirloom quilt yet once again. Today, it wraps me in its folds like the newborn baby that my grandmother became before she died.

There seems to be disagreement as to whether or not Alzheimer’s is genetic, but they really don’t seem to know much about it at all. However, having lost a grandmother and two Aunts to it (Aunt Annie forgot she was allergic to bees, so with their help, the disease killed her). (My paternal grandmother had a different type of dementia as well.) I can’t help but wonder if I, too, will have to face it one day. My chemo-brain experience gave me an in my face reminder of my fears of dying with the fog of dementia. I can’t help but wonder and fear if the future will make me into someone I’ve never wanted to be-angry, frustrated and forgetful. So, each time I forget a word or yell at Deb for some idiotic imagined slight- somewhere in the back of my mind is the fear that maybe my family’s nemesis is lurking in my brain’s DNA and maybe the chemo I had two years ago already set the wheels in motion. Even though I feel like I’m back to “normal”, whatever that means, I can’t help but think about the fact that people with Alzheimer’s don’t know they have it and believe that they are “normal”. The fear is always lurking…

Late June-The first gyn oncologist (adaptations from e-mails)

As far as they have done any staging at all, I am still in stage 1 cervical cancer, which is early and highly treatable. The one and only gyn oncologist here in this city said that I am too heavy for a hysterectamy and will only consider radiation as treatment for me. Radiation would probably make sex painful for the rest of my life, but a hysterectamy poses risks for bowel or bladder perforation or worse. It's a tough decision. I am getting a second opinion at U of M on July 9 to see what they have to say.

The one and only gyn oncologist in the city is a homophobic pig and I am not willing to let him touch me again. He was very unprofessional, but because I was desperate for answers and he is the only one here, I had to put up with his 30-40 minute tirade on how the liberals and the blacks are ruining this country. He (who works in a hospital committed to serve all, regardless of ability to pay) ranted on and on about how single women on disability "have no right to be pregnant again."
In his very first statement, after I introduced myself and Deb, my partner, he began going on and on about how Deb and I should not have the "special right" of getting married because there is alternate legal paperwork that we can do to safeguard our rights to see one another in the hospital and to safeguard our joint property. Even though he excercised his right to those things simply by signing one paper and saying "I do".

Hmmm, nope, don't think I'll let him touch me again. I don't trust him. And, because of his verbal aggression and prejudice against lesbians, I don't trust his medical judgment as far as my body goes. I long ago quit being political about gay rights, but when something like this happens, it makes me angry all over again. I want to be done with that fight. But obviously that fight is not done with me.

June 22, 2007 Journal Excerpt- Question of Jugement

My appointment with Dr. B. was terrible and I question whether or not his jugement is sound due to his open hostility toward Deb and me because we are lesbians. He used the excuse of my weight as his reason for not doing a hysterectomy. Either he's just scared because of a bad experience in the past, he's a bad surgern, he has a lack of confidence or is homophobic so much that he would rather castrate me with radiation than to follow usual stage 1 protocol which is surgery.

[more on this subject in another post that I will write later]

I had my CAT scan done of the pelvis and abdomen done on Tuesday. Wednesday, I woke up with a rash on my arms and legs. Now, it is also on my feet and belly and , I think, on my scalp. I believe I'm allergic to the dye that they used.

June 14, 2007 Journal Excerpt- The Diagnosis

Friday I go to see a gyn oncologist. Yesterday, Dr. H. told me that I do have cervical cancer. That did not surprise her so much. What did surprise her was the type, adneocarcinoma, and the fact that she found it not on the surface of my cervix, but on the inside of it. So, if I had had a normal pap and had not been tested for HPV,t hey wouldn't have found the cancer because pap smears check the outside of the cervix, not the inside.

June 1, 2007 Journal Excerpt-WAITING IN FEAR

I'm finding that now, as I wait for the pathology report, I imagine that every small cramp, muscle spasm or unexplained discomfort may be due to cancer eating away my insides. It's kind of amazing, I never realized before, how much pain and discomfort I ignore, but now I'm noticing every unreleased fart and muscle tic.

I'm struggling to stay present in the here and now.

May 3, 2007 Excerpt from Journal-WAITING

I think, perhaps, facing the possibility of cancer (whether it is or isn't), is a chance for me to really live what I preach. I need to learn to live in this moment, now, and in doing so, this will be a perfect moment. I need to let go of my self-pity and fear and embrace the joy and love that I have available to me now. Today. I need to somehow allow myself to accept support from those around me and I need to live life as fully as I can today. I need to stop focusing on my past mistakes and start focusing on the possibilities of the present.