“My Voice” by Christina Radzilowicz

I thought I earned my survivor status at when I was 16. At that time I moved out from both parents’ houses and embarked on the life of my choosing. Until my day of diagnosis, I never thought anything could happen to me that would be as bad as my childhood. My childhood was, by anyone’s estimation,  horrible. Not Holocaust horrible but “I wouldn’t wish it on my worst enemy” horrible.

Abuse, neglect, addiction, lies, deception– the makings of every Lifetime movie ever made.  Through every situation since my grand exit from childhood by leaving my “family,”  I felt an invincibility a sense that, as an adult, I was in control. Bad situations arose, but any response (because it was under my control) was infinitely better than childhood’s lack of control. The worst was behind me.

Although not so magical a thinker, my mind created intricate coping mechanisms that served me well. One of them was “I ‘prepaid’ for life misery, the rest of life can’t be as bad as those first 16 years.  No matter what.” I lived a philosophy that said, “I can now make my own choices and I am ultimately in control of how things go.” Pretty nifty way of going through life. Delusional, but nifty. As my friends bemoaned the milestone birthdays (25, 30, 50) I looked forward to getting older and felt a pang of strange jealousy toward my older friends….They were so far from childhood…so much closer to power and authority over their lives, so much more free.

For the 22 years beyond childhood, I always managed to have health care and handled issues as they arose. I did all the annual preventative stuff. I had prenatal care during my 2 pregnancies and went to the doctor when absolutely necessary. I had some hormonal issues after my second child but I thought I was dealing with them proactively. I realize now that those issues may have been the seeds of my cancer, but I was blissfully unaware of the foreboding.   I moved in and out of vegetarianism and bragged about not taking antibiotics as so many people do. Although I was overweight, I felt good about my body and my general health status. My stretch marks, although unfashionable, were the “battle scars” of pregnancy and I would never have my children without them.

Then everything changed. During my 39th year I was  persistently sick. I lived deep within the city limits of cancer for close to a year before my diagnosis.  If I had Googled all my symptoms, it would have mapped my location–latitude and longitude.  It would have spelled out exactly where I was. Instead I kept running down nameless streets wondering why everything kept getting less and less familiar.

That year I went to the doctor 4 times. My symptoms never got better. The doctor threw around diagnoses like: stress, peri-menopausal, stress, Irritable Bowel Syndrome, stress, allergies, stress. I asked for a colonoscopy and she said I should wait until 40. Again, my relative youth holding me back!!  This despite a family history of serious bowel problems.

So, Instead of a second opinion, which never even occurred to me, I went on a self-prescribed health kick. Sometimes, if you don’t have enough information, proactive is not proactive enough! I needed an expert who could help me. I took as fallback position that I could fix it myself.

I cleaned up my diet and embarked on a regimented exercise program. I worked up to being able to run 5 miles and drastically reduced my consumption of all things processed. All the while, my symptoms escalated. What was the use of another doctor’s appointment?  I felt my doctor was all but calling me a hypochondriac.

At the end of  September, the month before my birthday, I got an upper respiratory bug from my kids and could barely breath for about a week. I curtailed my exercise and my symptoms went away.  On my 39th birthday, I was sick, and although I was going through some changes in my life, all I could think was how happy I was that I was ALMOST 40.

A week after my Birthday I had no more stuffy nose, so I started to exercise again. I could barely breath during my warm up. My heart felt like it was pounding out of my chest when I started to run. I also realized that my appetite was completely gone. My appetite had already been slowly diminishing slowly which I, in all my cheery optimism, ascribed to my “clean” diet.

But now I ate two bites and literally could not choke down a third.  I called my doctor from work that Friday morning and demanded she x-ray me. I still hadn’t put the pieces together, but obviously some part of me had an idea. I hoped I had pleurisy which I had once before. What I told the doctor was, “I need an ex-ray, because I think I’m going down like Patrick Swayze”. She laughed, but ordered the x-ray.

I was working as an Environmental Community Organizer and went to the hospital closest to the University where I was planning to recruit volunteers that day. After my x-ray, I was dressed and clip clopping down an empty hospital hallway when my cell phone rang. It was my doctor–probably ready to push some antibiotics, I thought. Nope. She said I needed to be admitted.  I needed tests.

My immediate thoughts were about rearranging my afternoon–nothing more. Call the office to share my rotten luck of needing more tests, call my husband so he could pick up my daughter from school (since she was expecting me at dismissal). I still knew nothing of the seriousness of my condition.

In the early hours of Sunday morning, I heard someone breathing deeply just outside my door. I remember the sun streaming in from my right and opening my eyes to see my doctor hesitating toward my bed. I could make out tears.  My heart starting to beat very fast and tears came to my eyes before she even spoke.

She sat at the edge of my bed and said: “I’m sorry.  You have cancer.”  I was so angry that I am glad I’m not prone to violence. I just said, “GET OUT”. She tried to say more but I just repeated, “LEAVE” or “GO” or something like that. I felt betrayed. I had been telling her I was sick for a year and she hadn’t listened!

Still I had a warped idea of what this meant. I barely knew the distinctions between the types of cancer and I certainly  didn’t know about stages of cancer, or survivorship  or living with cancer. What was cancer until I contracted it? Cancer meant death. This was my worldview. Old people or–very rarely–younger people got cancer but, it was nothing I really had to worry about. My family had a strong history of heart disease and that was what I had to worry about.

Yet, here I was in this alternate reality where people called me a cancer patient. I didn’t cry much after that time with the doctor. I became interested in the inconsequential. I became preoccupied with my hair. People with cancer get chemo. People on chemo lose their hair. I had finally figured out how to straighten my hair so, when my husband came to see me, I wanted him to bring my straightening iron.
I withdrew from my kids. I didn’t want to see them. (Rather, I didn’t want them to see me.) I was afraid I’d lose my composure. Would I now become the villain in my children’s lives? The mother who died and ruined their happy childhood?

I asked few questions at first, because I just didn’t know what to ask. Within 24 hours 2 residents came in to discuss my condition. They were gathering information and I felt comfortable asking them questions. I asked them what this cancer meant for me. I asked them for my prognosis. Very calmly one of them said: “2, 3 months.” The other added that I should get “my affairs in order.” I couldn’t process  this. I had a 6 and a 10 year old. How do you wrap that up in 2 to 3 months? I was now truly in shock.

Thankfully, later that day, I was transported via ambulance a few blocks away to the Women’s Hospital and met the man who would become my doctor. He told me he would conduct an operation to see the extent of my disease and remove what he could. I asked him my prognosis. He told me he would have more information as after the “debulking” operation.

I told him what the other doctors said.

He was visibly angry.

He didn’t raise his voice, but  the intensity in his eyes said everything. “They told you what? You don’t even have cancer until I open you up and see what is going on in there.” He said more, but the message was clear: this doctor was going to listen to me, and it wasn’t in his game plan for me to die anytime soon.

The surgery was 5 hours long. My doctor came out declaring it a huge success. It didn’t sound so great to my husband and me. I was staged at 3C.

Considering their are only 4 stages, this didn’t sound so good.

But my doctor kept using the word “Optimal”.

To my mind optimal would have been, “Oops, huge mistake. Not cancer, just really funky indigestion.” That would have been optimal.

In the months of my first line chemotherapy, I still could only process so much, emotionally. I took offense to websites with titles like: “Being Cancer”. I didn’t want to BE CANCER. I wanted to be DONE with the whole ugly situation.  I thought I would get remission and live or die trying.  I had many, many complications and spent most of the rest of the year in and out of the hospital, but I was determined to take the most aggressive treatment and just power through.

After chemo I had second-look surgery which showed 2 areas of “smoldering ash” with active cancer cells. Still looking for that KO punch, I opted for the chemotherapy known as IVIP, the most aggressive weapon against this cancer.

Toughening up in preparation for the chemo, I biked myself into a serious leg injury, shattering my left tibia.  That required a plate and 3 screws.

Anyway, I completed the 5 courses of this miserable treatment.

By then my quality of life was practically nil. I slept most of the time.

Still, I clung to the dream of the big pay off. On my best day, the cancer marker was on the low side of normal. But it didn’t stay that way. It was slowly climbing and scans showed disease again.
My treatment then was “shake and bake” (Heipac surgery) on September of 2010. I had two clean scans but the blood marker was very high and rising. The next attempt to get rid of this cancer, once and for all, was Tomaxafin. That also seemed fruitless.

By April 2011 scans officially confirmed I was in recurrence. By May, I was enrolled in an investigational study of chemo plus a PARP inhibitor (a biologic agent).  I am now on a dose-dense weekly protocol which allows me more freedom. Now, nearly 2 and a half years post diagnosis, I am a different person.

I learned that passed grief does not immunize you from future bad luck.

I’ve learned to advocate for my health in ways I didn’t realize were necessary.  I learned that cancer doesn’t always mean immediate and eminent death. In order to continue to live through cancer I have to be as well as possible even WITH cancer. I learned that survivorship sometimes means just staying a few steps ahead of the illness, until the next best thing comes along.

I learned that cancer or no, I can’t put anything off.

At first I thought I could put things off until I was over this stupid cancer. Now I realize this cancer has changed me and that I will be a ‘cancer person’ for the rest of my life, even when I go into remission.
I have plans for the future, but I am more assertive with my present. I decide what I want, even when the choices are limited.  I’ve learned that being a survivor can happen over and over again.

This entry was posted on Wednesday, August 31st, 2011 at 2:37 pm and is filed under written word and tagged with Christina Radzilowicz, Ovarian Cancer.