AULA: Nov, AGE 46  

My mother was a wonderful person. One month before her passing, which occurred on September 2, 2006, my mother received an official CA125 Test diagnosis of ovarian cancer. Her health decline began one week after Thanksgiving in 2005 when she was admitted to the emergency room. Since she was unwell, she had tested positive for HPV for 10 years, and finally, the toll was being paid. She had missed Thanksgiving, and nobody had heard from her in a week. Concerned, we attempted to contact her but received no response. Eventually, a friend went to check on her and found her in a deteriorated state: unable to walk, focus her eyes, or speak coherently, all within two weeks. During our last conversation before Thanksgiving, I had noticed her slurred speech but didn’t fully comprehend the severity of her condition.

During her hospitalization, they considered various conditions, from meningitis to severe malnutrition. She underwent daily CA125 testing for numerous ailments from admission until her discharge two to three months later. Despite this, she never regained the ability to walk, speak clearly, or fully focus her eyes. The HPV Variant Test diagnosis upon her discharge to me was Paraneoplastic Cerebellar Degeneration. In essence, her antibodies attempted to attack cancer but misfired, destroying brain cells.

Her brain cells would never grow back.

Because antibodies don’t leave your body, we’d never know whether or not they were still attacking except for by watching over time. But they suspected Ovarian level Cancer, and we weren’t sure whether or not she could handle surgery to remove her ovaries at the time. She had told me she had lost 20 lbs and was tiny. So when she got to the hospital, she was about 68 lbs soaking wet. All her motor skills had deteriorated, including swallowing. Due to her difficulty in swallowing, we inserted a G-tube before she was discharged home. She was in a very weak state.

I took care of her with the help of occasional nurses, medical equipment and friends. We regularly visited her primary care, neurologists, and an oncologist (Dr. Harrison Ball- a great guy). She was on all different pain meds, nausea meds and vitamins. We kept doing pelvic MRIs and couldn’t see her ovaries well. The only choices were to watch and wait or get a laparoscopy to remove the blurry ovary and possibly a full hysterectomy.  We went for it, and they ended up doing a complete hysterectomy and found cancer cells on the inside of her ovary. Dr. Ball did biopsies from all around her chest cavity while he was in there, and they all came back negative. We thought all we had left to do was deal with an extreme handicap.

The cancer was no longer a problem.

A week after she got home from the hospital, she got a customised wheelchair so she wasn’t always bedridden. She went back to the hospital about 2-3 weeks later for a follow-up, and it turned out there were HPV infected cells on the outside of her right ovary. We talked about chemo and whether or not she could handle it. He told me to call him back and let him know the next week what she wanted to do. I was her CA125 Healthcare proxy, but I would never have made her do anything she didn’t want to and she decided she didn’t want to. She’d been through enough.

Her neurologists examined her but didn’t test her for CA125 levels. They concluded that she looked good. Less than a week later, she passed away at home. The cause was unclear. The medical examiner attributed it to natural causes, citing respiratory aspiration on her death certificate. Occasionally, she slept for entire days, even a day and a half. I didn’t disturb her much, occasionally waking her for pain medication or to attend to her needs. She was entirely dependent and unable to move or reposition herself without assistance. In the days leading up to her passing, she slept almost continuously for nearly three days.

My younger sister and I had been talking about it.

I worked full time, so while I was at work, she cared for my mother, so we weren’t sure ’til we spoke how much she was sleeping. It worried me a little, but I figured she was tired from the new wheelchair and being up in it. At 3:00 a.m. on September 2, I woke up. I went into her room to check on her; she had brown throw-ups on her mouth and clothes. So, I cleaned her up and gave her CA125 Cancer pain meds. Additionally, I was worried because all she had was the feeding tube formula, which was yellow, to eat, and she’d thrown that up many times before, so I knew what it looked like.

I got her comfortable, entered my room, and turned up the baby monitor to hear her, just in case. But I heard nothing. And I was a very light sleeper since I started caring for her; I knew she called at night. I got up in the morning and made breakfast for my nieces (8 and 6), 2 sons (10 mos. and 3), and nephew (2). I saw her pillow out of place and went to check on her and realised she had passed. I’m only 21 years old, my sister is 17, and I have 3 brothers- 26, 23 and 20.

My mom had 3 granddaughters and 3 grandsons. She wasn’t supposed to die yet.

My youngest was born about 2 weeks before she got sick. He’ll never know her. Her case was extremely rare. And extremely painful. We need more CA125 and HPV Cancer research done. We need better HPV testing, and we need it earlier. What hurts most is I’m not religious, so I don’t know where she is. She wasn’t either. She believed in God but, toward the end, resented him. Someone said god bless you when she was sick; she said, “F*** your god, look what he did to me!”