Sex and Cancer

http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y 

I hadn’t had an orgasm during the seven weeks I was on my own in America. I hadn’t missed it like I thought I would. I was either too busy or too exhausted to care.

      At 3.30am the morning after my diagnosis of plasma cell leukemia I tapped Alex on the shoulder. I needed to have sex urgently. In spite of the early hour he willingly complied. Men are good that way. I woke him again at 8am. I wanted more sex. It was a compulsion that had nothing to do with being horny or making up for months of celibacy. I was plummeting into the abyss and sex was the tether that tied me to Alex and through him, to the world. Sex gave me some control back. It was a giant two fingers to cancer. You might have got part of me you bastard, but I can still make the rest of my body behave the way I want it to.

      Alex had always been my best friend and my rock. I turned to him for comfort when I had a minor traffic accident, when I was overwhelmed at work or when the cashier screwed-up at the bank. He would put his arm around me and dry my tears and I felt better. But nothing prepared us for this. I needed Alex in ways I hadn’t needed him in a long time. I clung to him on this sinking ship that was my life. He didn’t know where or when I would strike next, but thankfully he was up to the challenge.

      After an exhaustingly amorous week I was battling to retain control over my mind. I wanted to keep having sex to feel alive. But I was getting so distracted by my illness it was starting to be impossible to unwind enough to enjoy it. The light that had burned so brightly from my erotic alter ego had dimmed. Like going blind, my other senses became keener. I could feel every throb as the blood pulsed through my veins. Every pounding thump of my heart echoed as if it was in a canyon.  I became obsessed with every perceived breakdown in my mortal chassis. My right hand felt a little tingly. A rib hurt. My stomach ached. With every twitch and every twinge my brain worked to decipher: “Is this the cancer or just an ordinary feeling?”

      Now every morning, instead of sex, the first thing on my mind was to take observations of my blood pressure, weight and temperature. I couldn’t converse until I had charted my progress or deterioration. Even then, the conversation would undoubtedly be about my disease.

      I asked Alex if it looked like I had lost weight. I already knew I was 4.5 kg (10 pounds) lighter than I had been before I went to America so it was a trick question.

      “Yes,” he said. “It’s sexy, but it’s not you”. 

      I’m sure he meant well but I was insulted. I took it to mean: a: I am not normally sexy; b: I am usually fat. Would I soon be too sick and too ugly to be desirable?

      The rampant sex evaporated. The rope holding me to Alex had become a string and it was fraying fast. One evening we sat in the kitchen staring at each other over cheddar cheese and a glass of sauvignon blanc wishing we could turn back the clock. Alex started:

      “I regret I didn’t make you go to a doctor earlier in the year.”

      “Ssslurp.”  I took a large sip of wine. 

      “I don’t know what I’d do without you,” he said softly.

      “Sniffle.”

      “I don’t know if I’ll stay in New Zealand.”

      “Mwaa, mwaa.” (Please don’t cut the string. I am still here.)

      I cried and then I was angry. It was my job to be hopeless, not his. He went from being my most fervent supporter to talking about my death. He had given up on me.

      “I’m really depressed now.” I poured another glass and sobbed into it.

      “Sorry. I’ve never been any good at support.” He threw his hands up in the air and walked away. Then in the tumble dryer that is my psyche, I came full circle. I would have to hang in there in spite of what he or anyone thought about my condition. That night I wrote in my diary:

      “Fuck you fuck you fuck you, I am going to do my best to outlive you all.”

      It was the only way to go on. In the morning I lay in bed and contemplated my life for hours. I thought about the things Alex said and I was angry again. On one side I thought he just needed to be able to tell me what he was thinking and I was being spectacularly unfair about judging him for it. On the other side I wanted him to stay the rock he had always been for me. It was his role to be strong and positive. I was doing enough worrying for both of us.

Another Honeymoon

 Get Goodbye Keanu

For the next three weeks my blood tests were good enough to keep me out of the hospital. By the end of August I only had to get a blood test every three weeks. With luck I wouldn’t have to see a white coat again until my appointment with Dr Comfort at the end of September.

      I felt better and better as the weeks progressed. I got a lot of my energy back, my appetite got better and I even started to grow a bit of hair again. It was another honeymoon period and I was going to enjoy every breath of it.

      I called my mother. She cried hysterically at the sound of my voice.  We were both thrilled that the transplant was behind me and the quiche didn’t kill me. I was still alive. I couldn’t help but smile and dance around the room a little bit.

The $5 quiche

 Get Goodbye Keanu

My habit each evening when I got home from the hospital was to have a hot bath. My left arm had to hang out of the tub to keep the PICC line dry but every day I looked forward to the routine. It allowed me to scrub off the smell and feel of the hospital. I filled up the tub, soaked my body, dipped my head under the water and washed my hair and scalp. Recovering from the high dose cyclophosphamide back in May, my head was now lightly covered with tiny strands of hair, like a baby’s scalp, with more hair in some places than others. When it was wet it reminded me of bathing the girls as infants. Their blonde hair would become invisible against their wet heads. The memory made me smile. I felt so relaxed and happy in the hot soapy water, a million miles from IVs and blood tests, that I had an epiphany. I suddenly wanted to volunteer. I saw myself driving old people to doctor’s appointments, volunteering at a hospice, helping the sick wherever and whenever I could. Then a reality check about wanting to do good things, but wanting to make a bit of money came crashing through. I wanted a selfless, satisfying, charitable job that paid.

      Thursday I checked in but didn’t check out of the hospital. I was having diarrhea again and my blood pressure was high at 158 over 102. My creatinine had lowered to 139, but was still more than twice my normal output. My mouth was starting to get inflamed.  A red area around my PICC line had to be watched for infection. My neutrophil count (the white blood cells that defend the body against infection) was almost zero.                On top of this there had been an “outbreak” in the hospital. The nurse wouldn’t tell me what sort of outbreak it was. But we were banned from using the communal kitchen and the cleaning staff would be working overtime to scrub every surface and throw out thousands of dollars’ worth of medical supplies that might be tainted. With no neutrophils, the word “outbreak” had me cowering in my room. I was given a GCSF injection, the same drug Alex had delivered to me to boost my stem cell count, to encourage my neutrophil count up.  It was time for me to stay in the hospital 24/7 hiding from germs.

      The prospect of the next five days with no immunity was pretty scary. Alex got obsessive about using alcohol solution. He used the pump inside my room, in the unit, in the ward, and in the main hospital. Everywhere he saw a bottle he squeezed it on his hands. We were really nervous. I read a story in the New Zealand Herald about listeria at Hawkes Bay hospital. Two immune-compromised older people died after eating tainted salami. They had probably used alcohol wipes and everything. You never knew where the bugs were hiding. But to go through chemotherapy and a stem cell transplant then lose your life over bad salami was pretty cruel. What a way to go.

      Fever set in on Friday. The highest it registered was 38.4 but it kept above 38 for the next few days. By Monday I was still feverish. My white blood count was under .10 (normal was 4.00-11.00). My hemoglobin was 93 (normal was 115-155).  My platelet count was under 10 (normal was 150-400). I had zero neutrophils (normal was 1.9-7.5). I was in bed a lot of the time, and spent my nights in feverish sweats. I hardly ate, slept a lot during the day and felt lousy. My anti-nausea medication and anti-diarrhea medication both did their jobs commendably however and both issues resolved themselves quickly. By the following Thursday my white blood cell count had risen to 1.97 and neutrophils to 1.37. I had bounced back enough that I was released to go home that night.

      The next day, Friday July 27^th, after a PICC dressing change and a blood transfusion to combat my low hemoglobin, I was officially discharged at 2.30pm. I had been in the hospital just two weeks. The staff wanted me out of the room because the next patient was waiting for it. I packed up and walked down to the hospital lobby. Alex was in Hamilton. He said he would leave immediately but it was still a two-hour drive to Auckland. I sat on a sofa in front of a TV, with a knitted hat on, hiding my now almost completely bald head, thanks to the high-dose melphalan. My few possessions in plastic bags were next to me. I started dozing off so I went to Muffin Break to get a coffee and decided to get a spinach and feta quiche that caught my eye in the warming cabinet. Halfway through eating it I suddenly remembered what I had read in the low-immunity food guide. I wasn’t supposed to have food from warming cabinets or soft cheeses. In fact the delicious little quiche probably ticked all the boxes for everything I wasn’t supposed to eat. I hadn’t even left the hospital and I had gone wrong already. I thought about the salami ladies and imagined the opening sentences pertaining to my death:

      Ten minutes after being discharged from a $200,000 stem cell transplant, a patient died in the foyer from complications after eating a $5 quiche.

Transplant Day

 http://www.amazon.com/Goodbye-Keanu-multiple-myeloma-ebook/dp/B00CB87K8Y

Friday July 13^th  was stem cell transplant day. Talk about luck! What an ominous day to undergo something so risky. The nurse came in and weighed me. I had gained a couple of kilos from all the liquid that had been pumped into me in the last twenty-four hours. My left hand was swollen and I was afraid they would have to cut my wedding rings off. I wished I had left them at home.

      The cleaning woman named Petie came in to my room just as I was exiting the toilet. She was mopping the floor and warned me to tred carefully back to bed. I nodded and stepped gingerly over the floor. Once I was settled back in bed, she told me a hilarious story about a nurse in high heels who slipped and fell on a wet floor in the reception area of the ward. Petie had warned her that the floor was wet but she still walked across it four times. On the fourth pass she slipped. She fell backwards, her legs sprawled apart, papers and high heels flying across the room. She landed on her butt then got up slowly and sheepishly asked if anyone saw where her shoes went. The way Petie told it I could imagine every second of the woman’s determination, then mortification. We were both nearly crying with laughter by the time she finished the story.

      At 2pm the stem cell transplant was under way. I had six bags of cells to get through at about fifteen minutes a bag. That meant I should be finished in an hour and a half. The bags were hooked up to the IV pole one by one and dripped into my arm exactly like getting a blood transfusion. As each bag nearly finished, the next was defrosted in preparation for hanging. It was all very low key and carried out efficiently and confidently by two nurses. I felt well during the transplant until five minutes before the end when a wave of nausea overtook me. I threw up in a plastic cup kindly provided to me earlier. Apparently it was the preservative the cells were frozen in that caused the nausea.  Six bags full was a lot of preservative. When the nurses finished, they hooked me up to another IV to keep me hydrated and left. I sat there feeling a little stunned. I couldn’t believe that months of anticipation and trepidation of what the process would be like were over. The leaflets I had pored over on transplants, nutrition, the PICC, the melphalan, the side effects and the dangers could now be shelved. For six months I had been hearing about the autologous transplant. Now after an hour and a half, the transplant was complete.

      July 14^th was day plus one. I vomited again in the morning followed by diarrhea. The side effects had begun. A bowl of cereal arrived on a tray at the same time. I gave it a miss. I was feeling grungy but my white blood cell counts were good so I was paroled for the night. I just had to promise to return the next morning for a blood test. I agreed to the terms of my release. My mood brightened exponentially.  On day plus two I had to return to the hospital for a blood count, but was released again for the night. Psychologically it was the best medicine they could have given me. Logically the nurse told me:

      “You are more at risk of catching something in the hospital than at home, so go home while you can.”

                On Day plus three, Alex dropped me and Abby off at Auckland hospital. I was hoping for a repeat of the previous day, a blood test and release. But my kidneys were in a bit of a crisis. My creatinine level was 150. My normal level was around 60. The preservative had damaged my kidneys. I needed lots of IV fluid to flush the poison out of them. I was going to be hooked to an IV for the next four hours. So instead of sitting in the room, Abby and I went for a walk. We left Auckland Hospital through a connecting corridor and went into Starship Children’s Hospital. In the centre of the hospital there was an atrium with a children’s play area below it designed like a fantasy forest with timber poles as trees, stepping stones, rocks and log benches. Four pretty pastel coloured lifts had windows that looked out over the play area. We decided to ride the lifts for fun. I nearly got crushed between the doors a couple of times when the wheels of my IV pole got stuck in the grooves.  But I got better. We walked Starship’s cheerfully painted halls, exploring and trying to use up some time. But as we passed the different departments and saw parents and children outside doors waiting to see doctors, the significance sunk in.

      “It’s so sad that parents have to spend every day here with their sick children,” I said to Abby.

      “Yes. I’m glad that I never had to stay in hospital because of my eye disorder. It could have been a lot worse.”

      It is good to re-establish that very thing in your life. Abby has a genetic eye condition which causes low vision. But aside from not being able to drive or read some signs, she has got on well in life. It isn’t often that we witnessed first-hand how much worse it could be. It was very humbling.

      On our way back to Auckland Hospital, a woman in the lift was holding a small girl in her arms. The girl was about three years old. Her mother was chatting with a doctor standing next to her.

      “My other daughter has been in pain all her life, but Chloe.” she looked at the girl in her arms, “has gotten off relatively easily.” Chloe lay silently like a rag doll. It broke my heart.

         The next day was another blood test and another bad result on my creatinine level. It had come down only slightly to 144. I was going to be given two litres of fluid through an IV again. A hematologist named Jim came to see me and talked about the effects of the freezing preservative on the kidneys.

      “We’ve had lots of talks about how to minimize the damage to the kidneys. We are thinking that someone getting as much as six bags of cells should get their transplant over two days instead of one.”

      “Uh, huh.” (Now they think of it!)

I wanted to ask if the kidneys were damaged permanently but something stopped me.

      “The kidney problem is not a huge thing but its better avoided,” said Jim.

      I was relieved to hear that. Abby was with me again and I was anxious not to spend another four hours in the hospital. The nurse negotiated with the doctor to give me the two litres of IV fluid over two hours instead of four. My arm was freezing as it was pumped in and I had to put a jacket over it. But when I was released at 2pm instead of 4pm I figured it was worth it. I put my wig on and Abby and I walked out of the hospital into the sunshine. But then near Auckland University we collided with a crowd of hundreds of students. I saw them as hundreds of germs and I wanted to go somewhere quiet fast. We negotiated our way down to the waterfront end of Symonds Street and after turning off the road, we came across an adorable café set out like an English pub. It was empty and I thought it might be closing, but the owner invited us inside.  We had a gorgeous coffee and a muffin. I took photos of Abby. I almost felt guilty, like a criminal on the run from jail, and couldn’t help looking around me in case I got caught. Alex was still at work and after I splurged I realized we might not have enough money for the bus home. I had only brought a few dollars with me to the hospital. Luckily Abby had some money so when we pooled our resources we came up with enough change.

      The next day I gave Abby a break and told her not to come to the hospital with me. She had a list of things to do before she flew back to San Francisco on Saturday. I was given a blood test, and my creatinine level was still high. So I was given two more litres of sodium chloride in water over four hours. I was happy to go back to four hours instead of two because it was less cold and uncomfortable going into my vein and my heart didn’t beat so fast. When I finally finished at about five pm, for the fifth night in a row, I was released to spend the night in my own bed.