Discouragement

It was discouraging to be exhausted and plagued with health issues so to try and relax I organised a drunken night out with some friends. We ended up at their house for a midnight drink but the alcohol started to affect me badly. A sort of zombie state set in and I suddenly felt paranoid. All I wanted was my bed. I said a quick good night and grabbed Alex to go home. By the time we got ready for bed I couldn’t talk and could barely move.

Three weeks into June I was determined to shake off the tired old woman I had become. I always hated people who complained about minor health issues and used them as a reason for not doing things. You just had to toughen up. Mental attitude was everything and I was going to prove it. I told Alex I wanted to start running again. We went out on a Saturday morning and after walking a few metres, we began jogging on our hour long course. Within ten minutes I had to stop. My breathing was too hard and my legs were too heavy. When I looked at Alex and realised he had hardly broken a sweat, I was frustrated at my ineptitude and apologised. He shook it off. We took a short cut and walked home. By the time I had changed out of my running clothes, I started feeling the twitching sensation again that signalled another urinary infection.  The next morning my lower abdomen tugged at me like I was having a bad period. I made another appointment and told the doctor I had the same symptoms as last month. She didn’t do a urine test because she said it would show the same results. When I went to see her, I thought I’d mention my other minor health problem.

“Also I’m getting a bloody nose every evening,” I said. “Sometimes I blow large blood clots. Could the antihistamines I take for allergies cause them?”

“No. The antihistamines shouldn’t give you any long term effects.” The doctor shined a light up each nostril and shook her head. “I don’t see any blood vessels that need cauterising.” She sat back. “You should only be concerned if you can’t stop the bleeding.”

“It always stops on its own,” I remarked. I nodded to myself. I had asked and been told it was nothing to worry about. She prescribed me another antibiotic for the infection and set me free.

In spite of my health troubles we tried to run one more time the following weekend. I was convinced the other times were just flukes. I was sure that somehow I had lost my fitness over the last few months, and one day I would go out on the course and have my usual energy. Within a few strides I knew it was going to be useless. I wasn’t going to make it. I looked at the gradual hill in front of me that only three months earlier I ran up without a problem. Now I was bent over, breathing so hard and sweating so much I could hardly move. Between pants I came up with theories as to my sorry state. I thought my depleted energy could be due to the antibiotics I was still on, or the urinary tract infection I was still getting over. I couldn’t understand how I could have run 8.4km in March and now, only three months later, I couldn’t run up a single hill. It sucked. I felt awful. All I could do was lie down on my bed with a hot water bottle and sleep.  Alex was really concerned.

“You need to go back to the doctors.”

“You’re right. I will.”

I lied. I was sick of going to the doctor’s office. So I went to Dr Internet instead. I found several sites that offered a free diagnosis if you typed in your symptoms. So I put in shortness of breath and bloody noses. One site said they could be explained by both cold weather and allergies. Well, it was winter and I did have allergies. Although it seemed too simple an explanation, it was an answer and I was satisfied.

Infections

During my week off, when I was supposed to be resting, I got a urinary tract infection. It started slowly one afternoon, with a weird tingling sensation when I went to the toilet. But within hours it got worse. Soon I needed to use the toilet every half hour. That increased to every twenty minutes, then every ten through the evening. By midnight I moved myself to a sofa in the family room so I could have access to the toilet quickly. The night went on forever. As soon as I got back to the sofa I would feel the urge to go again and each time I went, it felt as though every nerve ending was on fire. It was like I stuck a wet finger in an electric socket every time I sat on the toilet. It was excruciating. Usually a “wait and see” sort of person, by 4am I had a complete change of heart. I couldn’t wait for the night to be over so I could go to the doctor’s. The next morning I called as soon as the doctor’s office was open at 8.30am and got an appointment soon after. I used the toilet at home, at the mall across from the doctor’s and at the doctor’s office before I got in to see anyone. I was in agony. A quick test showed a definite infection and quite a bit of blood in the urine. Although I had never had a urinary tract infection before, the doctor did not give me the impression that there was anything unusual about it. She didn’t ask any questions or offer any advice. She prescribed a course of antibiotics to take and as my health improved, I thought nothing more of it.   

I started correspondence with my cousin in America. It fuelled my excitement and longing for the adventure to come. Although the weeks would be structured rather than spontaneous, the trip still gave me a sense of freedom and flight. I wired my cousin the money to buy a car. I began living in two worlds. In New Zealand I was a sick, overtired, overworked woman. But in America I would be Thelma or Louise, driving down the four-lane highways with the wind in my hair. My time would be my own. I hadn’t had that in more than twenty-six years. Nothing was going to get in my way.

The following week I went back to work but I struggled to get up in the morning. Even after ten hours of sleep all I wanted to do was stay under the covers. It was like I was hearing the alarm clock from a deep pit that I couldn’t climb out of. When I did get myself to work, I was impatient with the day care children. I looked at my watch constantly and wanted to leave as soon as I arrived. Where I normally got involved in activities, volunteered to oversee lunch or change nappies, now I stood and watched, too tired to chase after the children. I carried wads of tissue in my pocket to try and cover up my now daily nose bleeds. It was usually just a small amount of blood but it always came on suddenly and ran quickly. There would be no sign of anything unusual then in the next moment my lips would be covered in a trickle of warm liquid. I would grab a tissue and quickly dab at the drips, hoping no one had seen. On top of the exhaustion and bleeding, my body was changing. Over the next ten days my stomach got so bloated I looked pregnant. Nothing I ate or drank or any exercise I did could counteract what was happening in my gut. I had to wear elastic wasted pants and belts to try and hide my huge stomach.

That day my heart was beating like a drum

Not wanting to undo our good work, we kept up a schedule of running an hour each weekend throughout April. I was able to keep up with Alex for the next few weeks. Then on Easter Monday, April 25^th, we were late for my daughter Charlotte’s choir performance in the Auckland Museum. We walked from Newmarket to the museum (about a 20 minute walk), hurried up the hill to the entrance, into the lift and out on the floor just as the choir arrived. The quick pace would not have bothered me normally. That day my heart was beating like a drum. I was sweating hard. I limped to a bench in the World War I sanctuary opposite the choir, sat down and didn’t move for thirty minutes, until the last song was over. I did think being unable to recover from the relatively short walk was a little unusual but I figured the few glasses of wine I had the night before had caused me to feel tired and somewhat impaired. 

I had worked in day care for a few years. I loved the energy, pace and unpredictability of working with small children. It was the least intellectual job I had ever had and perhaps that’s what made me love it more. It was sheer physicality with a dose of child psychology thrown in. Even though many times it felt as if we spent the day erecting a solid foundation only to have it knocked down over night, unlike other jobs, at 5pm I could leave without taking any work or any stress home with me. Running around for eight hours serving the needs of under two-year-olds encouraged a sweat on the coldest days. It seemed only reasonable that, with my demanding work schedule, I would be exhausted occasionally. The week after the museum concert I asked Alex if we could take a break from our weekend runs for the next two weeks. I was working a full week at the day care and I needed some time to recover. He was happy to comply. When we started again in mid-May, I was able to complete a one-hour run, but only just. My breathing was good but my legs were like lead. At first it was like I was running through sand and then through deep water. By the time the run was over, I could hardly lift them. I felt like I was one-hundred year’s old. For the first time ever, I gave in to the demands of my body and gave myself the following week off of work. I didn’t feel sick in the way you do when you get the flu. I was just exhausted. I thought if I just had a few days to catch up on some sleep I would be fine.

But things got worse. I started to get nosebleeds. I blamed my hay fever, which caused me to sneeze heavily and blow constantly. I figured the bleeding was a result of the irritation of the lining inside my nose. Then I started sweating profusely in the evenings. Since it was May, and wintertime in New Zealand, the sweating was curious but I still didn’t think there was anything really wrong with me. I blamed the evening sweats on a sort of shadow menopause, a lingering symptom of the menopause I had gone through a few years earlier. It is amazing how easy it is to rationalise an irrational situation.

I should have seen it coming

It took the death of my Aunt Joan in January 2011 to spark my love affair with life. It was an irony that, had it not been to do with my own existence, I would have found amusing.

Aunt Joan was my father’s younger sister. She died at the age of seventy-four from pancreatic cancer. She spent her last days in a hospice in Connecticut surrounded by her family. Although I hadn’t seen her in years as she lived thousands of miles away, her death triggered an obsession about the end of my own life. At the age of 51, I heard the clock ticking and I needed to do something exciting and quick. It was time to take a risk, to go away, to pursue a new course. I was waiting for my moment to leave New Zealand and cursed my inability to just get up and go. I wanted to be spontaneous but I didn’t have the genetic make up for it. So I began my passionate affair with life by planning a long trip to see my family and friends in America.

I planned the trip for October, in nine months’ time. That was as spontaneous as I could get. While at first wary of my need for flight, my husband Alex indulged my preoccupation. This prompted guilt feelings over my self-indulgence and I invited him to join me for two weeks of sightseeing before my solo flight began. We would spend a week in San Francisco where my oldest daughter Abby, aged 23, lived. Then we would have a week in New York City. After that I would spend the next seven weeks driving up and down the East Coast of the United States from Maine to North Carolina, visiting friends and relatives. I looked forward to sharing memories of soccer games and Spanish classes with high school friends and recounting family trips to the Cape with my cousins. I would see my mother, my siblings and the city where I was born. I was really looking forward to it. At the time the trip didn’t feel particularly risky but then I didn’t know how sick I was.  I was going to drive a total of about 2,000 miles.

Meanwhile life went on as usual and my aunt’s death faded into the shadows of the more urgent tasks of everyday life. Alongside Alex, I threw myself into training for the 8.4km Round the Bays charity run to take place in Auckland on March 13^th. The training schedule was for six-weeks and built up from a twenty-minute run to an hour run, which we executed around our local streets. I ran alongside Alex without any noticeable problems. I have never been as fast as him, but I was not short of breath or in any pain. On race day we finished together in about 53 minutes. We didn’t think that was bad for a couple in their early fifties.

I felt great physically and there was nothing to indicate I should be concerned. A routine pap smear later in March found nothing unusual.

For anyone facing multiple myeloma. I know how you feel.

Although I have been in treatment for eleven months and I am currently in partial remission, my disease has a ninety per cent return rate. There is a very high risk that I shall be dead soon. So I am typing this very quickly.

   I was diagnosed with plasma cell leukaemia in mid-December 2011. It is a rare and aggressive form of multiple myeloma – a blood cancer that will kill more than 10,000 people in the United States this year. After the tears and the self-pitying “why me?” questions, I got to work researching my disease. The news was grim. Life expectancy was two to eight months. Having never been lucky at cards, monopoly or lotto, I figured I would be dead before Santa got a chance to fill my stocking.

      But I managed to hang on. I was able to see my two daughters and my husband blow out birthday candles in the first half of 2012. I ate a chocolate heart on Valentine’s Day and a chocolate egg on Easter. Okay, I ate chocolate every day after I got diagnosed. But I did have cancer.

      I felt the chill when summer first turned to autumn and I saw the first flowers of spring. Every achievement was a hallmark of my existence. They were also a testament to my “brave fight”. As they stand around my casket, my family can proudly say: “Well at least she made it to her 52^nd birthday.”

Just to give credence where it never seems to be due, my horoscope for the week I was diagnosed was so right: A change in perspective might be absolutely necessary.

X-rays, needles, baldness, the inability to have an orgasm, begging an abusive sibling to donate stem cells and debating who I should leave my paltry possessions to (what have I been doing all my life?) definitely changed my perspective. But these things were tolerable. Even the anticipated loss of family and friends and the ultimate question of what to wear to my own funeral faded in the exhilaration of actually waking up each morning.

      Eight months after my diagnosis I knew I was going to surpass the grim statistics of my predicted decline. An appreciative grin turned around my permanently drooping mouth. Every breath was a new beginning. I became ecstatic over every bite of a family sized Cadburys bar.

Now I am grateful for every day that I wake up, for every time I talk to one of my children, for everything I touch, taste or feel, for the absolute cacophony of life - because today may be my last chance to experience it.

                But that is bullshit. That’s just what everyone wants to hear. When you are seriously ill colours do not become brighter, roses do not smell sweeter, and people are not nicer. People are people. Whether you are here or gone, they will carry on being noble laureates or complete shits. We cannot change the universe because we are about to join it ethereally.

                There’s a website called “It’s OK to die”. Their web page states: Those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Like one of my favourite superheroes, the Hulk, it’s not a power I asked for, nor do I want it. It’s never okay to die. If given a choice, I would live. I think anyone would.

A thirty-five year old woman who died of breast cancer was interviewed and stoically said she was ready to go because there couldn’t be a better day in the future than she’d already had. I’m glad she found peace and power, but I prefer a quote attributed to George Clooney. The beginning was a little boring so I substituted it for blah’s: “blah, blah, blah … It's a mean thing, life.”

Life is a mean thing. As I sit here in October 2012, after using half a light-brown make-up pencil to try and create some believable brows where mine used to be, I am depressed. I am happy that the macabre stem cell collection, transplant, and hospital stay are behind me and that physically I feel seventy-five per cent like my pre-diseased self. But I am afraid of what is ahead. Like a yogurt that hides in the corner of a fridge until way past its sell-by-date, one day my health will give way. The cancer will take over and I will be gone. That day may be very soon.

      So suddenly I am faced with the concept that I haven’t actually contributed anything during my life. I grabbed on to the idea that through my writing I may have made someone laugh or brought a family closer. I hoped that through my day care work I may have given a child some much needed love or confidence. I know through my children I have provided the world with two strong, intelligent, capable women. My mother’s ambition was curtailed by being a 1950s housewife but her intelligence and passion motivated me to get the university education she never had. So perhaps it has been my role to simply be a building block, a stepping stone for the next generation of women to walk on as they pursue their goals. On the evolutionary scale we are all an incremental version of the perfect human being. Instead of one hundred per cent clever or beautiful, some have to be half as clever, three-quarters as talented, one-third as ambitious. So I take my place among the slightly successful. Someone has to do it. But there is nothing like facing your mortality to make you wonder how you could have better used your time here on earth.

This story is my contribution. It is my way of making up for all the unproductive days. Here are the ups and downs, the love and the insanity that can only belong to the dying. I sincerely hope it helps. Good luck, all the best, and see you on the other side.