Thursday, June 21, 2007

Thoughts on having cancer

Yesterday one of my dearest friends told me she has uterine cancer. She is a happy, funny, friendly woman with a great loving husband, 2 devoted children and 4 or 5 young grandkids.

The news made me sick to my stomach and brought back a flood of painful memories. I had cancer 25 years ago and the memories are still as fresh today as they were then. I wrote them in my original manuscript which will never see the light of day, so I decided to share some of them with you in this blog post. Be warned that this is going to be a long post.

Flashback to 1982.

Each October I went to my doctor for an annual physical. I always went then because it was my birthday month and easy to remember. I felt fine. I didn’t think anything of the physical and certainly didn’t expect to find anything wrong. I went back to work and forgot about it, expecting to receive that familiar follow up letter in a couple of weeks telling me all was well.

This time, instead of a letter, I received a phone call at home from my doctor saying he needed to talk to me. Apparently one of my tests indicated a problem. He wanted me to come in and talk to him about it but I figured if it was important enough for him to call me at home I didn’t want to wait to hear about it.

I insisted he tell me what was going on then and there. And he did. He told me I had an abnormal Pap and a high probability of cervical cancer. He said I needed to come in to see him as soon as possible to discuss my options for treatment so I made an appointment to go to his office a couple of days later.

I hung up and sat in silence staring at the phone as if some magical answers were going to pop out of it. I wanted to pick it back up and, as I had when I was a little girl, ask the operator to connect me to the person with all the answers that could make me feel better. But phones didn’t work that way any more. When I picked it up all I heard was a dial tone.

Slowly the realization of what the doctor said began to sink in. I might have cancer – cervical cancer. The big C! I was absolutely stunned.

In my family cancer was a devastating diagnosis. We were plagued by all kinds of cancer, and almost always with the same result – death. My dear Aunt Alice, my favorite person who taught me to drive in the fields and back roads of Southern Illinois, nursed me through my Rheumatic fever, taught me Spanish, put me in plays, took me on trips and loved me unconditionally, died of cancer in the early 60’s and I still mourned her.

The enormity of the situation was overwhelming. It was difficult to comprehend what was happening. I had lots of questions but there were no easy answers. There were no answers at all.

I called a few people to let them know what was happening. The calls were short and direct. I couldn’t make small talk and couldn’t respond to their questions. The worst call was to my mother. She delivered the news that her mother, my Grandma Dickens, had died of cancer – cervical cancer.

By the time I arrived at my doctor’s office, I was absolutely numb. He said I had ‘carcinoma in situ’ defined as: cancer that involves only cells in the tissue in which it began and has not spread to nearby tissues. He said it wasn’t bad news because it was the earliest and most treatable form of cervical cancer. But it still felt like a death sentence and I thought I was too young to die. I was still trying to learn how to live – really live.

He explained the treatment options. I could have a complete hysterectomy and hope the cancer hadn’t spread. That might take care of it but there were no guarantees. Even if it did take care of the cancer it would give me a whole different set of problems to deal with for the rest of my life. My doctor recommended a more conservative course of treatment, starting immediately with a fractional dilation and curettage (D&C) and cone biopsy.

To bring a little perspective to this, when I was diagnosed in 1982, they knew a lot more about cervical cancer than they did when my Grandma Dickens died from it back in 1952. At that time they only knew how to diagnose it after the fact and usually too late to cure. By 1982, thanks to research great progress had been made in both diagnosis and treatment but cancer in any form was still a scary diagnosis.

You may be aware of the fact that recently scientists discovered the cause of some cervical cancers and developed a vaccine against them. They advertise it on television now and, when they do, I want to jump into the commercial and tell everyone to take the vaccine. I want to emphasize the importance of prevention because I experienced the debilitating affects of having the disease.

But that treatment didn’t exist in 1982. Just the word ‘cancer’ elicited massive fear, especially in a person with a familial history of the disease.

On November 1st, 1982 I went into the hospital and was prepped for surgery. I was given a shot of morphine for relaxation but we discovered very quickly I’m allergic to morphine, which meant another shot was required to negate the affects of the first one. Since I hate needles, this just added to the increasing anxiety, stress and depression beginning to engulf me. I went home the next day knowing we would have to wait three months then repeat the tests to see if the surgery eliminated the problem.

The next three months I went to work every day - business as usual, best foot forward, taking care of things and trying to stay above it all. I pretended everything was fine and worked hard to convince everyone this situation wasn’t affecting me, but underneath I was terrified.

My public persona was seemingly unaffected by my diagnosis. I even managed to take a twelve day vacation in Cancun where I met a good-looking pharmacist from Germany, and while I told him in passing about my cancer, I downplayed it to the point of a mere triviality, but it was always there in the background haunting me.

Physically, I was fine and no different than before. I wasn’t in any pain and never had been. In fact, I looked and felt really good. People were always surprised to learn I had cancer because there was no outward appearance that anything was wrong. Designer clothes and shoes hid a lot of problems.

Intellectually and emotionally, I was in total denial pretending everything was fine. I moved through my daily life and routine as if nothing had changed. In reality I was crumbling under the pressure. Privately the stress was excruciating.

Spiritually, I was in a vacuum with no real beliefs and nothing to propel me forward. I prayed a lot but was totally skeptical about the effect of prayer on my situation. Praying is complicated when you’re questioning the existence of the very God from whom you’re requesting assistance.

I started smoking a lot of pot again. It was the only recreational drug left in my arsenal at that point and I needed to escape. Alcohol in massive quantities didn’t like me as well as it used to and I gave everything else up when I returned to college. So pot became my antidote to the pain and anxiety. It never interfered with my life during the day; it just made it more bearable at night and on the weekends. Those were the most difficult times for me. It was then I was most alone and vulnerable to overwhelming feelings of sadness and remorse. I felt like I was being punished for having led a decadent and meaningless life.

At the beginning of March, I returned for more tests, convinced everything was going to be fine. Again, the call came with bad news. No changes. This time, the doctor conferred with an oncologist and together they did a colposcopy – another name for a nasty, invasive test that left me feeling violated. It wasn’t the doctor’s fault. It was just the nature of the test. The recommendation this time was cryosurgery – hopefully freezing it out of me. This turned out to be another nasty and invasive procedure. There was a quick follow up in May with a scheduled test for August.

And that’s how it was for the next few months. Test. Wait. Test. Procedure. Test. Wait. Test. Procedure. Test. Wait. Test. Procedure. Slowly, but surely, the disease was killing me – not physically, but emotionally, intellectually and spiritually. It was gnawing away at me.

By the time I reached the holidays in 1983, I was totally beaten down. Physically, I was exhausted - running on sheer willpower. I couldn’t sleep and when I did, my dreams were so vivid and scary I’d wake up even more exhausted. I wasn’t abusing my body but I also wasn’t taking very good care of it. I was disgusted with it for having contracted cancer. I could barely stand to look at myself in the mirror even though there was no outward sign of any problems.

I was exhausted intellectually too. Everything was forced and the long hours at work were no longer a respite from everyday life but a chore to which I was obligated. Everything and everyone irritated me. I’d been living a lie by pretending everything was okay. It wasn’t okay. The charade was wearing me out. Just deciding what to wear or which groceries to buy was totally draining.

Emotionally, I was depressed, stressed and miserable. I was on the raw edge of totally breaking down. I couldn’t do it because in public I was Wonder Woman but privately, I cried most of the time. I felt lost and alone – even when other people were there.

Spiritually, I had nothing on which I could draw. I was empty, drowning in misery. No one knew what to do to help me and I couldn’t give them any clues. I didn’t believe in anything anymore and didn’t know where to turn.

The problem just wouldn’t go away and I was very tired of wrestling with it. I could have the hysterectomy but there were no guarantees it would make me cancer-free and there were all the long term issues associated with hysterectomies. Or, I could continue with the conservative route – invasive treatments, constant tests, and interminable waiting. Neither course of action was appealing. I wanted another option, but there wasn’t one.

In the months since I was first diagnosed, my life gradually changed. For some reason, many people aren’t comfortable being around someone with cancer – even in its mildest form. Maybe it’s a fear of their own mortality that makes them want to stay away. My closest friends stayed by my side no matter how difficult and dragged out things were or how bitchy and depressed I became. But many of my acquaintances disappeared. In retrospect, it was probably for the best because it cleaned a lot of artificiality out of my life but it still hurt like hell. I thought I needed those people and they weren’t there.

My terrible attitude probably had something to do with everyone exiting my life. But it was an interesting revelation to me about the lack of caring and sincerity in many people and it raised serious questions about why I felt they were so important in the first place.

The doctor told me my cancer was probably not fatal because we caught it so early, but I just couldn’t get past the word ‘cancer’. In my family it had always meant death. It was an all consuming and all powerful word. Just in case he was wrong, I made out my will and labeled everything in my house that had any value to make sure it would all go to the right people. It was one of the only things over which I had control.

And just because my life wasn’t stressful enough, I bought a house – a fixer two-flat in a transitional neighborhood just west of DePaul University. So now I had a big mortgage and a place that needed lots of work to add to my list of distractions. But, like my last apartment it had one very necessary component – a big closet where I could grow my pot plants. I had my priorities irrational as they were.

I was very organized and analytical about my whole life then. That’s the way I made it through each day - I made lots of lists to keep me on track. I had to write everything down as soon as I thought of it so I wouldn’t forget anything, but I was so preoccupied with my own misery that I forgot lots of things – including where I put some of my lists. They would turn up days or weeks later and I would beat myself up for not having accomplished things that really weren’t important. I yelled at myself because I couldn’t yell at anyone else.

By the time the holidays arrived I, who had always loved Christmas, didn’t really care. I sent out the cards and wished everyone lots of happiness and good cheer. I put up the tree, decorated it, turned on the lights, and pretended everything was great. I bought and wrapped all the presents and delivered them as cheerfully as possible. I did everything I was supposed to do. I pretended everything was fine.

But everything wasn’t fine. It was all just make believe – just another fantasy to shield me from the devastating unhappiness. Underneath that fake exterior the emotional pain was crushing me. I felt like everything in my life was crumbling beneath me. I was secretly waiting to die because everyone in my family who had cancer died.

I was like an iceberg emotionally, frozen in an unfeeling world of self-protection, with just enough warmth to keep people from staying away completely, but not enough to do what I needed most – to draw them to me.

But it was the only way I could cope.

1 comment:

Merry Jelinek said...

Laugh and the world laughs with you. Cry and you cry alone...

Those seem like the most callous words imaginable, but they do bear out. Hopefully, down the road of life, you've made a few real friends who will stay with you through the crazy, sad, scary times - but most people won't, can't, don't know how. If you've made one true friend in your life, you're blessed, because most of the people around you are not going to be equipped to put you first... It sounds like you found more than one.

By the way, same diagnosis at age 22. Though, in my case, the conal biopsy removed all of the pre cancer cells and so far, so good (I'm knocking on a lot of wood) I think there's been a lot more progress over the years - my case was a little more than ten years after yours, my sister in law was just treated last year...

Still, the big C, the only one I'm more afraid of is Alzheimer's - and they both run in my family.