Real People Stories – Palmer

On June 7, 2018, I was hit out of the blue with a visible HPV test diagnosis in my stomach: suspected ovarian CA125 cancer. I, the hospital-phobic, had to undergo surgery to survive. Then, everything happened very quickly within two weeks of a major abdominal incision, followed by six chemotherapy treatments. When my “chemo carousel” began, I aimed to document this new experience and write a text about each CA125 treatment. I did this in the purest form, as my state of mind allowed during this stressful time. I have learned to listen to myself and spontaneously do what is possible at the time and not necessarily what I want. Now, a new year has begun. I am happy about the time of life given to me. And I am happy to tell “my story” to those who want to hear it.

My second chemo

“You look so sweet,” calls out the dentist’s assistant, who has known me for 20 years, when she sees me wearing a colourful turban. Earlier on my bike, a few passers-by smiled at me, and two men called out flirtatiously. “That’s a great hat!” With red lips, eye makeup, and a matching dress, a striking bohemian appearance – femme totale.

I usually only take this much care when styling myself for a performance, sometimes for the tango, and today is my “hair has fallen out” premiere. Wait, no; I helped it along after it started to come loose from my burning scalp in strands on exactly the 12th day after the first fix (er… sorry, Gabe), and within three days, I had a full nest of hair in a cup. It was an unusual experience to run my hand through my hair casually and suddenly find myself holding a handful.

The wig maker had prepared me for the emotional depth of this CA125 disease moment by saying, “Before you get stained, come, and we’ll cut it all off.”

Mohawk and bald head

I wanted to go to the big summer festival with my hair. But on the 16th day after the HPV chemical treatment, my childhood friend and I immortalised the hair loss, cut and shaved on film and captured the stages of mohawk and bald head in pictures. Self-determined and with fun. It was so important to me not to feel like a victim.

The bald head suits me, reminding me of my teenage years in the 80s. However, apart from making me cold, I don’t feel comfortable with it when I go out in private among people. The wig, with its proud head of hair as a counterpart to the bald head, is just as foreign to me.

The evening before the second chemo, I looked in the mirror. I felt like a samurai with HPV disease. I was almost looking forward to going into battle for the second chemo. My values were so bad a few days ago. My CA125 trained doctor called me and told me to report to the big HPV clinic with the Huguenot name immediately. Still, I felt vital, well-nourished, and determined. I was ready to go into battle against free-floating cancer cells. They want to settle in and feed off me. Pack of parasites! Vampires!

So, I move into my “six-hour chair” with my cooling pads for fingers and feet, which combat the numbness. I unpacked nuts and books and asked for the relaxation CDs with players, which the professor enthusiastically told me about.

A Minor Victory

“They don’t exist,” says the compact HPV DNA Test Nurse. “Excuse me? That’s strange,” I purr. “Hmm, then I’ll write to the professor and tell him that the CDs don’t exist.” In no time at all, she opens a cupboard with over 100 CDs, smiles at me, hands me the player, and I choose which music should make me happy in this second round of chemo as an ally against the cancer cells.

Like last time, I get tired and fall asleep. When I wake up in the afternoon – how quickly these six hours pass – I find it difficult to gather my things.

Before saying goodbye to the drip and flushing the port, the HPV nurse says laconically: “That’s an injection you can get tomorrow, 24 hours later?” “Excuse me? Why?” “It’s for the blood cells.” “Wait a minute,” I think, “maybe she means for that?” So that the chemo does not destroy the CA125 infected immune cells, the leukocytes increase. I remain silent, amazed at the operational blindness, without test instructions, being given this “Neulasta” injection as if I were a CA125 professional who injects myself. However, the proximity of my home to Kotti (note: a Berlin junkie hangout) could cause this misunderstanding. On the same day, I sleep for another twelve hours.

Flu symptom effects.

After I gave the injection the following day, the predicted flu symptoms were bone pain and nausea. How bitter the poisons, the gifts, still taste after a few days from the hard palate.

On the third day, post-Chemo 2, I had difficulty watering the roof garden. Since this illness has freed me from paid work, I have taken on the task of watering the roof greenery for our house community. I enjoy peace and having time without major variant issues and scheduling tests and work pressures. I am almost ashamed of it. Did I have to get type cancer to do what I can right now, to be and remain with myself and my state of mind in the now?

Bone pain, numb fingers, chemo knife pricks in my bloated stomach… But otherwise, I am fine; I am neither throwing up nor have I lost weight. A neighbour asks me about my fear.

I am not feeling it right now; I am stoically walking the path of the here and now. And I see the butterflies and sparrows, feel my nausea, and hear birds and the city’s noise. I need all my strength to do this; fear would weaken me: “You know,” I say, “if a relapse comes and I am palliative, then I will be afraid. Now I am doing what I have to do.”

I didn’t tell him I am practising singing for production next year and have some creative plans. If it doesn’t work out, it doesn’t work out, but this way, I have a goal and motivation.

The good moments

My stomach hurts; I can feel the chemo raging in its lining. I’m spooning oat soup, lying down and being, and being grateful—for the beautiful things, the good moments, the man at my side, the friends and neighbours who offer their help, simply the moments when I can lie in the wind under this oleander and feel the monster clouds that announce autumn.

“Woe is me, where can I find the flowers when it is winter, and where the sunshine and the shadows of the earth?” writes Hölderlin.

But it is still late summer; I can ride my bike and look at the stars wrapped in a blanket. The only thing that would be nice is to die from Ca125 disease without pain if that is how it is meant to be. The heart’s desire of every HPV infected person.

Who is blessed with it?