Day Minus One

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

Day minus one. The transplant was twenty-four hours away. We went to Auckland hospital at 8am and entered Ward 62, the haematology ward. I was told I would have a private room in the bone marrow transplant unit. I was thrilled to have been given one of only five private rooms. But first, because my room wasn’t ready, I was given some pre-chemo IV fluids in a general ward room. There were three women in beds as I arrived. I said a cheery hello to them all. They were all chatting and laughing with each other like old friends. They were surrounded with personal possessions: books and DVDs, snacks, cheerful duvet covers and stuffed animals. Photos and cards were taped on the wall behind their beds. There were pictures by young children, crayon drawings of a life beyond this place. It was just like a university dorm room, especially when one of the women went to the bathroom and threw up loudly.  When she returned, she struck up a conversation with her neighbor. I overheard the other woman saying she faced months in hospital.

      “My son asked me if I would be in hospital all year. I swore to him I would be out by September. (It was now July 12^th). 

      The woman who had been throwing up nodded but she was obviously absorbed with her own situation. She said she had been in hospital for four months and initially wasn’t let out of the ward at all. Her leukemia had returned. She was grey and sighing. She was eleven years younger than me. The third patient, in the bed alongside me, left to go to a “look good, feel good” seminar. It is a cancer programme that helps women feel better about themselves when dealing with the side effects of cancer including hair loss.

      At first I distanced myself from these women, thinking they were in far worse shape than me and my case was nothing like theirs. When I heard the woman say her leukemia had returned I began to think this might be the future me. The hopeless me, when all the earlier treatments failed to keep working.

      After four hours in the general ward I was moved to the private room. It was like going from a backpackers lodge to a Hyatt. There was a single bed in the middle of the room with all sorts of knobs and switches on the wall behind it. A high, narrow table next to the bed had drawers. One had a lock and key for personal items. On the other side of this was a tall wardrobe. A big window looked out over Park Road above the entrance to the hospital. The room had a TV, DVD player and its own bathroom with shower. I unpacked, settled in and within a short time the previous IV was withdrawn and I was hooked up to the melphalan. There was no turning back now. The nurse brought a cup of ice to suck on to keep my mouth cold. This was supposed to help prevent mouth sores. Instead of chips they were cubes almost the size of my mouth, so sucking them was difficult and made my teeth chatter. But I was determined to do everything I was supposed to, so I ate cups and cups of cubed ice. The mephalan took just forty-five minutes to deliver but afterwards I was given an IV bag containing sodium chloride in water. This was to wash the chemo out of my system. The nurse took constant blood pressure and temperature readings. I was going to be hooked up to the IV all night.

      I tried to put some night things on then, with my shirt hanging off my arm, I realized I couldn’t get it off because my arm was hooked to the IV. I rang the nurse and asked for help. She unplugged me so I could change. I put on an eye mask and ear plugs to hide the unusual sights and sounds of my first night in the hospital. It reminded me of trying to sleep on an airplane. I left the bathroom light on so I could negotiate the IV pole to the toilet during the night. I got only a few hours’ sleep.

Day Minus 3, Day Minus 2

 Get Goodbye Keanu

For the hospital, I packed sanitary pads for the diarrhea, baby wipes - because they are just so handy for everything, two knitted hats to cover the bald head, sweatpants and t-shirts. I didn’t know whether to pack pajamas or not. I decided to leave them. I would just wear a t-shirt and sweatpants to bed. I thought of my time in hospital as kind of a university dorm situation. But I didn’t know if that was smart. I had no idea if I was packing the right things. I was told by the transplant nurse to use “natural” shampoo and soap. This was to avoid perfumes or additives that could cause an adverse reaction. Alex and I had a brief look in a chemist, but natural products were horrendously expensive. It seemed the more you left out, the more overpriced the product was. Mom sent me a travel pack with lotion, body wash and shampoo in it which was made with goat’s milk. I packed and just hoped goats were allergen free. For entertainment I packed a few magazines, books and an iPad with a prepay internet account. FYI the haematology ward in the hospital has no free wifi.

      In the week before my transplant, I made sure I did everything I could to make Alex’s life as easy as possible if I died in hospital. I paid all the bills, my will, which I had never made before, was now up to date and witnessed. I picked up, dusted, vacuumed and went food shopping. The house would be in good shape for entertaining friends who wanted to come in person and tell Alex how sorry they were for his loss. It was the only power I had in this situation. The rest was up to the staff at the hospital. Whichever way it went, I just wanted it to be all over with.

      Day minus 3- July 10^th was a simple blood test. Day minus two was the PICC line procedure. It was a lot less traumatic then I feared with my useless veins. I was worried they wouldn’t be able to get the line in my vein and I would suffer another central venous catheter in my neck. But the staff was professional, astute and confident. The feat was accomplished in no time. I was given a local anesthetic and a needle was inserted into the inside of my left arm, about 3cm (an inch) above my elbow. I felt the nurse pushing the line in my arm at first but I was waiting for much more pushing and discomfort when she consulted the monitor and said it was in place. I was so happy that it was so easy. She put a sterile bandage over the hole in my arm. As this puncture point would stay open for the next three weeks with the PICC line hanging out of it, it was a worrying site for infection. It had to be kept extremely clean and watched closely. I thanked the team and was headed off to my next appointment.

      This time it was for a chest x-ray.  The little dark room with a large white x-ray machine hanging off one wall was like entering the Bat Cave. There was a booth with glass windows that sat half-way above the room where the technicians could oversee the procedures. Three women who looked like supermodels were giggling in the booth. One of the women confirmed who I was and gave an order.

      “Go in the changing room and take your top off and put the gown on. Knock when you’re finished.”

I wondered why I had to knock. I changed and tried the door handle. It was locked from the outside. I found that rather odd. I knocked a few times and was let out. I stood against the machine while a technician took snapshots of my insides. It only took a few moments. After my x-rays I went back into the changing room. I put my clothes back on and knocked again. No one came to the door.

      “Hello?”

I knocked two more times.

      “Hello?”

I was just about to have a claustrophobic episode when I spun around and saw another door behind me in the cubicle. I tried the handle. This one opened and led into the hospital hallway. I escaped and peaked back into the x-ray room. I don’t know why, maybe to explain why there was so much knocking going on, or to tell the beauty queens that a little more information about the changing room might be nice. But the x-ray room was completely dark. The booth was empty and the lights were out. The models had all left without a word. That was a little weird I thought.

      I got lost looking for the place to get my ECG. The electro cardiogram was a heart test. I told the technician I couldn’t find the testing room and she nodded knowingly. Most of the signs for departments in the hospital were bright blue and hanging overhead. For some reason their sign was on a white placard on the floor, the type you see outside a café. I never looked down because I expected the sign to be above my head.

      “I know,” the cheerful woman said. “We’ve wanted a new sign for years.”

      I was thinking the most useful thing in my will might be leaving them money for a sign.

      After lunch it was time for a pentamidine nebulizer. It was awful. If I was given a grade on how I dealt with it, it would have been an “F”. The nurse explained how to put the plastic mask over my face which led to a nebulizer tube. The nebulizer was plugged into a spout on the wall. The idea was that water particles would mix with hot air and condense into airborne water droplets that could be inhaled. The pentamadine drug was put into the tube to be inhaled in the water droplets which bubbled at the bottom of the tube. The nurse told me that when the bubbles finished, I was to turn the machine off at the wall, leave the equipment on the bed and shut the door on my way out. She told me she didn’t want to be sucking in copious amounts of the drug all day so she didn’t stay with her patients. She then opened a window and scuttled from the room leaving me alone. It was a little disconcerting but I got started. Unfortunately I was like a novice smoking a bong. My first hit sent me into spasms of coughing and the drug-filled steam that should have gone down my lungs, floated away into the room. My next attempts were no better. I coughed and coughed and although I tried to shut my mouth tight and keep in the steam, I let most of the drug escape. Eventually I found a way to suck in without choking. I clamped my mouth around the tube and sucked in slowly between my clenched teeth. I hoped I rescued enough of the drug into my lungs to make it work.

I Hate My Life Right Now

Get Goodbye Keanu 

After the pre-admission tests were finished I was able to enjoy a little honeymoon period. My transplant was still four weeks in the future with its promise of violent diarrhea, infections, mucositis and nausea. The discomfort and fear of the stem cell collection was fading into the past. I had my last shot of velcade and wouldn’t have any more until after the transplant recovery period was over.  So I was in a sort of happy no-man’s land. I even suggested we might go to America at Christmas time. But then I had to take it back quickly as I realised in December I would be having post-transplant “consolidation” drug therapy. I wouldn’t be able to travel anywhere. I needed the lifeline of Dr Comfort.

      Still I was in a tranquil mood for the next three weeks. We went to see Flight of the Conchords in concert in Auckland and the warm up comedian Arj Barker really resonated with me. It was as if he was speaking to me directly when he told the audience that we were all going to die so to make the best of it. He said to really live every minute, and that we should simply be happy that we were here at this moment watching this show. It had all been said before, but this time it really affected me. I vowed at that moment to do just that. I wanted to be happy that I was alive for each moment and squeeze whatever I could out of each day, whether it was watching TV, reading a book or spending time with my family. I couldn’t spend every day thinking it was all going to be over soon because that thought ruined the moment I was in. My fate would come soon enough whatever it was going to be and there was nothing I could do to change that. So I had to let it be in the hands of the gods or the BIG GIANT FOOT and be happy and grateful for each moment that delayed the foot from squashing me. I now saw how disgraceful and undignified self-pity really was.

      In spite of the pep talk, the closer my hospital date approached, the more my mood soured. I didn’t want to have the transplant for several reasons. The discomfort I would go through was high on my list but not the highest. While the treatment was still ahead of me I had hope for a cure. But once it was done there was nothing else but to wait for the cancer to return. I hated the thought that this would be over my head for the rest of my life. I even wondered at times if the stress was worth it.

      Everything I learned from Arj Barker disappeared. I was snippy and short and caused arguments when there didn’t need to be one. Initially Alex tried to cheer me up by talking about future travel plans.

      “We could still go to Italy next year.” Alex was patient, understanding and encouraging.

       “If I’m still alive.”  I was totally sarcastic.

      “You’re thinking negatively.” His voice got a little edgy.

      “I didn’t say I was going to be dead, I just said if I’m still alive”.  It was a pathetic attempt to cover my sarcasm. He knew enough not to bait me further.

      Another evening Alex was sharpening a knife in the kitchen. He had sharpened the same knife the night before. Charlotte was in the kitchen with me and I was rolling my eyes at her as we watched him sharpen.

      “Is there a new insurance policy out on me? Am I not dying fast enough?” It was doubly sarcastic.

He didn’t know what to say.

      Another night I criticised Alex harshly for mixing up a couple of chair mats. I was allergic to our cat and wanted the mat on my arm chair to be cat-hair free. Alex had thrown both fluffy chair mats in a pile and didn’t know which one had come from my chair. I was really angry.

      “One day you will be allergic to something and then you will know how it feels.” I yelled in a pathetic display of self-pity. Although I had sworn off self-pity weeks earlier, it had now come back with a vengeance. His patience finally wore off and he snapped at me:

      “You’ve been grumpy for a week and I’m sick of it.” 

      I was unrepentant and I stormed out of the room. I was allowed to be a little grumpy. I had cancer after all. But it wasn’t the cancer that had me so irritable. It was that I had a confirmed hospital date now and it was only two weeks away. I was scared.

      But that’s no excuse for punishing my family. I was bringing everyone down. I had to pull myself out of the cave. I tried to channel Arj Barker again. I really wanted to appreciate every moment. I slumped back to the family room and apologised to Alex. The patient partner in me had returned.

      “It’s a phase, we’ll get through it,” he said softly.

      My daughters were coming home from their respective universities and I wanted our time together to be fun. I had to make myself believe the outcome would be positive both for my family and for me. I rehearsed another chant:

      “I will be well, I will be well.”

But underneath that there was a chant I couldn’t stop and it was growing louder.

      “I hate my life right now.”

The Interview

 Get Goodbye Keanu

Alex, Abby and I went to an information session about the transplant on June 14th. The nurse specialist listed the worst case scenarios of what could happen during and after the transplant. Five days after being dosed through an IV with the chemotherapy drug melphalan, the fun would really start. Highlights included nausea, diarrhoea and more hair loss. My reproductive organs would be sterilised and the lining of my stomach and intestinal tract would be damaged. There was a good chance of mucositis, a condition that made your mouth fill with sores that could get so bad you couldn’t swallow, requiring a feeding tube. But if you did manage to eat, you were allowed to bring whatever you wanted from home. I was wondering if there was a bigger Cadburys bar then the family size.

      The hospital days were given minus or plus numbers, with transplant day being day zero. It began for me with day minus three, when I would get blood taken. Day minus two, I would get a PICC (peripherally inserted central catheter). The PICC line would go into a vein in my arm and be pushed up to my heart. This would give easy access for administering drugs into my body and for taking blood samples out.  On day minus two I would get a chest x-ray, ECG, and a pentamidine nebuliser. The pentamidine was inhaled in steam through a plastic mask. It was taken mainly to protect the patient from pneumocystis pneumonia. (Thank you Wikipedia). Day minus one I would get another high dose chemo through an IV. This time instead of cyclophosphamide, it would be melphalan. The next day, “Day Zero” I would be given my own stem cells back.

      The nurse asked if I had any questions. There was so much information I didn’t know what to ask, so I shook my head dumbly. A thick green folder on her desk had my name on it. When she left the room I picked it up and flicked through it. It was all test results and history except for a letter written by a haematology doctor whose name I did not recognise. He was obviously asked to consult on my case. He agreed with giving me an autologous transplant while I was doing well.

      “But typically in plasma cell leukemia there is a quick crossover.” (Which I assumed meant that it came back quickly). “The outcome is usually poor in these patients”.

      It was like I could see the doctor physically shrug his shoulders as he wrote it, thinking to himself:

      “There’s not a lot we can do for this woman, statistically she is going to die, and soon.”

It was horrifying that a stranger had written down my fate in black and white like that. It was like I could feel the pen strokes on my skin.

      The pharmacist came to see me next. I quickly put the folder back on the desk and pretended I hadn’t snooped. She was a chirpy British girl with a nervous laugh. She went into more detail about the melphalan. Along with the other side effects there could also be allergic reactions, including fever and chills.

      “And we are really good at getting rid of hair.” She laughed and twitched when she spoke. I knew she was trying to lighten the atmosphere, but I wasn’t in a laughing mood. The nutritionist came in next and I was barely listening. Something about low immunity and watching what I ate. She gave me a leaflet anyway so I wasn’t worried. I was thinking about the green folder and the letter it contained. But when the social worker came to see me, (I was informed the psychiatrist had quit and hadn’t been replaced) I smiled obligingly. 

      “How are you coping?” She asked. Her notebook was open, and she was ready to write down my answers. I knew I had to make it good.

      “Fine.” (lie)

      “How is the stress?”

      “Fine”. (lie)

      “Do you have support?”

      “Yes.” (truth)

It was like being on a job interview. I told her what she wanted to hear. She asked about ten more questions about how I felt about the transplant and my disease. I guess I answered her questions satisfactorily because I got the gig – the transplant was full steam ahead.

      I just wish I had not read that letter. In spite of my stunning performance for the social worker, I left in a cloud of anguish. I could not stop thinking that my cancer would come back and none of the procedures would make any difference.

      It gave me a complete change of heart on my earlier hypothesis that dying slowly was better because you got to say goodbye and eat a lot of chocolate. Dying slowly meant daily emotional torment. It was like Groundhog Day. Every day I woke up and was given the same fate only in my world there was nothing I could do to change it. If I got hit by a bus I wouldn’t have time to agonise over the end of my life, or that I would never meet my grandchildren or that I wouldn’t have another Christmas. When you are given a slow-death sentence you think about stuff like that all the time. I mean ALL THE TIME.

      But then I found a report with good news. In one study fifty-per cent of the plasma cell leukaemia patients were alive after a year. Twenty per cent were alive after four years. Why couldn’t I be in that percentage? I was heartened to read that not everybody dies, at least not really quickly. That was an enormous boost. I was back on the rollercoaster. My outlook completely turned around once more and I embraced life again.