(Introduction)
I have cancer.
I think that is the first time I have written those words. And it has taken me four months to get to the point where I could do so.
This page contains (or better, “will contain”) my personal story of what I have experienced so far. It is in no way meant to be universal or to set any examples. If I have learned anything, it is that every case of cancer is unique – the form, severity, prospects, treatments, reactions, progress, and prognoses of this disease are different for each and every patient and we all deal with it in our own personal ways.
One of my ways is to write it all out, which I have been doing since the beginning. But it has taken me a while to decide to share it. Since I am in the middle of my story, the plan is to start each post here with a quick update on the current state and then to go back and publish what I have written so far chapter by chapter. As far as my perfectionist inner editor will allow, I will try to keep the older stuff as original as possible – as I wrote it at the time, complete with some content that will later turn out to be untrue.
So where am I now?
It is April 22nd – four months have gone by since the original discovery of a tumor. I am currently just beyond the halfway mark in my chemotherapy which consists of six cycles, three weeks long each. Each cycle has brought its own symptoms and challenges, but all in all, I imagined much worse than it has turned out to be so far.
Today I looked at myself in the mirror to monitor the state of what is left of my hair. About two thirds of it fell out in Cycle 2, and then the rate of loss went down suddenly. It was very thin, but I could still get by without a scarf. These past few days, though, I have had to admit that the bald patches are getting more visible. As I brushed my hair this way and that to cover them up, I suddenly had an image of those pathetic old balding men who raked a few straggly strands over their heads. My younger self had made merciless fun of them – who did they think they were fooling? And here I was, attempting my own version of a comb-over.
I guess today is the day that I am officially moving to head scarves and beanies.
And now to my story. From the beginning ( . . . or should I say “The End”?)
(Part One – “The End”)
I meant to start this two days ago but just couldn’t muster up the energy. That was just 72 hours after first hearing the news. I now have to reconstruct about 110 hours in which my life, in a single moment, went from being one thing to being something entirely . . . else.
The story begins on a Wednesday two weeks before Christmas in an overly lit and sanitized room – the kind of place where secrets and other awful surprises would have trouble finding a place to hide. I am in a white torture chair, naked from the waist down, watching my somewhat rough gynecologist waving around one of those medical dildos like a laser sword. She continues the swishing movements even after the thing has been inserted into my much less spacious vagina.
“Yes. There is something in there,” she says. “It’s about 20 cm long.”
“Something? . . . What?”
“You can get dressed now,” she answers.
A minute or two later I am sitting across the desk from her as she goes through the possibilities of what exactly it is that she has discovered. We dance around the term “tumor” for a while until the weight of that as yet unspoken word becomes unbearable. Yes, it could be. She simply can’t say without more tests. Lots of tests. But whatever it is, it has to come out. She starts telling me all the steps I have to take now – and quickly! – until I apologize and admit that I wasn’t expecting any of this and that I am having trouble taking the information in. Her eyes soften, she slows down and starts spelling it out as if for a child, point by point. She makes me repeat the most important information and we arrange my next visit to her office.
Ten minutes later I am standing outside, and my husband drives up and stops. I get in. Curiously, neither of us says anything. I think he is the one to finally break the silence with “. . . And?”
“It’s bad,” I answer.
I can no longer reconstruct our conversation on the drive home. I only know that I plopped a big load of worry into his lap. Here – YOU deal with this now. That may be a bit unfair to myself, but I did already know what an exceptional crisis manager he is, and my relief was palpable when he declared at home that he would take care of everything from that point on. He started making phone calls and appointments and consulted every one he could think of. He called my doctor to get a straighter story than the one I had been able to give him. He kept his eyes and ears open for any connections he could cultivate.
It turned out that the earliest possible appointment for the first test (CT) wasn’t until Friday, which gave me one whole day at home in my new reality. I slowly developed the cognitive dissonance of not assuming the worst while still trying to be prepared for it. I spent much of the day hiding in my bed. Over time I found my brain focussing its attention on the foreign object inside of me. It began to take form, become an independent entity, take on a personality. If this continued it would soon need a name. But it was also still an illegal squatter occupying my abdomen and it needed to be evicted. Out with you! Get lost! And don’t show your face around here again! This growing need to rid myself of the invader inside me made me less afraid of what would be my very first operation.
My husband came home earlier than usual and informed me of the next day’s new schedule. Not only would I have a CT in a nearby city, but from there I would go right on to Graz and see the Head of Gynaecology in the university hospital there. This was way ahead of the original schedule which also didn’t have me seeing the top guru of the department. But as is often the case here in Austria, it turned out that my husband’s sister knew someone who knew someone . . . Calls were made and I skipped to the front of the line. As my husband wasn’t free to chauffeur me around all day, he arranged for his other sister to do it for him. With her living an hour and a half drive away from us, this meant her devoting the whole day to me. Once again, someone was going the extra mile – or in this case, 300 miles, to help us out.
Friday
Having never had a CT, I was picturing one of those tubes and horrendous claustrophobia, but this scan turned out to be the least intrusive of any. I didn’t even have to undress. The machine was more like a big white innertube ring that my body passed back and forth through. The only creepy part was some fluid infusion which seemed to leave my body immediately on being injected. If you ever peed in a cold pool or lake as a kid, that was the feeling. The nurse immediately let me know that what I thought was happening, wasn’t.
I would have left that office with a sense of relief if not for the concerned looks on the nurse’s face and her comment that it was good that I was going straight to the hospital from there. It also turned out that the results which they originally said would be coming on Tuesday were suddenly available after only 20 minutes. When I arrived an hour later at the gynecology guru’s office in Graz, they were already lying there on his desk.
For someone who is such a bigwig, I was immediately struck at what a nice man he was. After two sentences in which we established that we had both grown up in the States, we switched to English – which made everything so much better. (All of these medical terms are already foreign to me, and then to hear them in German makes them sound even scarier.) Among other information, he told me he had worked for some time at the Mayo Clinic which made him practiced in talking smack about Wisconsinites.
I was vaguely aware that the room was fairly full – there were two nurses – one coming in and out – and two young medical students, standing quietly and observing the whole consultation. These two did not leave the room even after the doctor asked me ever so politely if he could examine me. As I came out of the dressing room minus my pants and underwear and went to the torture chair, I used what remained of my mental powers to will these two students out of existence. But I still remember their wide eyes, staring at the computer screen image of my vaginal scan. Now there was something they didn’t see every day!
The exam was relatively short and, strangely enough, completely painless (except for the presence of the audience). I got dressed and went back to the desk to hear the verdict. The doctor began with questions: “Are you here alone? Do you have anyone here? Nearby?” I told him that my sister-in-law was waiting outside in the cold, having not been allowed into the building thanks to all the Covid restrictions. He suggested I call her and they would let her in. I didn’t take that as a good sign. By the time she arrived in the office, we had already dived into the pool of crappy news. I remember staring at the words “ovarian tumor, possibly malignant” and his drawing of my reproductive organs plus the huge invader. When my sister-in-law came in, he repeated it all – this time in German. We talked about surgery dates – before Christmas? – yes, please! – and before I knew it, I was signing forms and committing myself to a chain of coming experiences that could no longer be broken. At this point, the doctor told the two medical students that they could leave. One of them leaned in toward me to get my attention so that he could say goodbye. I gave him a little nod and mumble, while thinking “Do you realize how hard I’m trying to make you not exist? Don’t say goodbye to me!”
The doctor asked me if I had any more questions and I replied “Probably. Hundreds of them. They just won’t occur to me until I get home.”
“They will start occurring to you on the drive home,” he said and then wrote down his private telephone number. He assured me that I could call him at any time in the coming days. He repeated that about three more times before I left.
My sister-in-law then drove me home. We talked about . . . something . . . I am sure, but don’t ask me what. I was feeling . . . something . . . but don’t ask me what. Once back home, she didn’t stick around long, having yet another 90-minute drive ahead of her, but as I walked her to the car, I remember saying “You know, I think I will just go out and buy myself a tablet before I go to the hospital” so I was obviously already beginning to mentally prepare for what was coming. (She thought it was a good idea.) It turned out that my husband was two steps ahead of me. When he came home an hour later from his day in Vienna, he handed me a bag with a brand-new tablet inside.
The last thing I did before going to bed was a big mistake. I read through the pre-operation information package the doctor had given me. I naively thought it would tell me things like what to pack, but it turned out to be an incredibly long and detailed, gruesome depiction of everything that could possibly go wrong during surgery and what would happen in each case. If this or that nearby organ gets injured in the process, then it will be removed and replaced with some artificial substitute . . . that kind of information. I started picturing the lower half of my body as consisting of a remaining chunk of stomach attached to a little string of intestine floating around in a vast emptied space. Reminder to self: make it clear to the surgeon that I would really like to hold on to as many of my original parts as possible.
Trek* 