face to face with mortality
Swedish death cleaning (decluttering) is fashionable these days and it is indeed happening at our home. At 74, I am dealing with terminal cancer and do not want to leave these tasks to my husband afterward.
At my annual physical last November, I mentioned occasional blood in my urine and getting up multiple times each night to use the bathroom. A CT Scan identified a non-obstructing kidney stone. However, my PSA level was high so my doctor sent me to a urologist.
More bloodwork showed an even higher PSA level so she ordered a prostrate biopsy and a PET scan which indicated: “Malignant neoplasm of prostate metastatic to bone.” When I asked what that meant, I was told: “We are no longer talking about a cure.”
Head spinning indeed, from a kidney stone to an incurable prognosis in two months.
On to the oncologist who confirmed: “Multifocal prostate cancer with extra prostatic extension with multiple osseous metastases pelvis right and left ilium, proximal right femur, right posterior fourth rib, and T2 thoracic spine along with multiple lesions in the liver.”
I was put on two toxic medications delivered in Caution Hazardous Drugs protective packets. One eliminates testosterone and the other slows the metastasizing in other parts of the body. I passed on chemo as a zero-sum gain.
My husband and I were devastated, in shock and deep mourning. Friends rushed in with prayers, regards and care. Everyone wanted to visit but that was like moths to my very dim flame. I could not process their grief alongside mine.
Grateful for emails, cards, texts, phone calls, flowers and short visits. Not helpful: telling me I was going to beat this, suggesting I seek other medical opinions and experiment with alternative therapies. I need friends and family to just be with me. My husband is always there surrounding me with love. He is enough.
The drugs have severe side effects: sweating, brain fog, fatigue, muscle tone deterioration, loss of body hair and trouble sleeping, along with bone, joint and muscle pain. Women friends empathized with my pharmaceutical hot flashes. My world became very small.
It is hard not to become my disease. Navigating blood draws, body scans, urology, oncology and palliative care appointments—daunting. Getting bombastic test results before meeting with health providers—scary mind-boggling.
When complaining about the escalating pain in my legs, a pharmacist suggested one of the meds was known to have interactions with statins which I had been on for years. So, my cardiologist advised discontinuing it to improve my care and now maybe my cholesterol will get me before the tumors.
My urologist suggested self-catheterizing 2-3 times a day to help empty my bladder. Activities are determined by how close a bathroom can be in every situation. Never expected to be wearing diapers but here I am.
At night I am up and down hourly which leaves me drowsy throughout the day.
Mornings are filled with Bone Builders exercise classes and barn visits with my beloved 19-year-old Shetland. Art-making is cathartic but not very productive. Naps are ever-present. Nausea complicates meals. Compazine settles my stomach but more pills is not what I am looking for.
Wills, trusts and advanced care directives are updated as current realities changed our priorities. Goodwill got a good part of my wardrobe and CDs found willing homes. Exhibition catalogues went to libraries and artists; files of articles, speeches and workshops were tossed; and I got rid of copies of my videos, including VHS tapes from the 1990s.
I kept a few prints and drawings. Online links to major videos are active and my book because art: commentary, critique, & conversation is still available. These traces remain, at least for a while.
In a recent three-month check-in with oncology, I decided to stop taking one of the drugs with hopes of mitigating the extreme nausea and brain fog. My doctor agreed with my choosing quality of life over quantity with the option to reassess at any time.
Within days I could focus again and the queasiness dissipated. My husband and I began to go on short excursions for ice cream and gallery visits. I look forward to the weeks ahead.
To learn more about the author, visit his website: johnkillacky.com.
