Detached but Still Alive

Goodbye Keanu

That was just the beginning. The whole body needed work. I wanted to be a stunning corpse. I wanted the “wow” factor. I wanted people to think I looked too good to be dead. The hair was the next thing I noticed. It needed colouring. But I was afraid to. I read somewhere that some hair dyes caused cancer. That was ironic. Ha!  Fuck it. I bought a box of Clairol dark blonde permanent hair colour. It was darker than I usually went but then the roots wouldn’t be so noticeable to the hospital staff, the mortician or the mourners. I kept my legs shaved and my underarms waxed. Later the chemo drugs took care of the need to buy any hair products or even a razor.

      My style of shopping also changed. I was detached from those around me. The practicalities of being on the precipice meant trying to keep myself as healthy as possible. So instead of engaging with my fellow humans, I saw all shoppers as potential contaminants. I made bananas around anyone with a cough and stepped out of the way when groups of people walked toward me. I felt like an alien who had no resistance to earth viruses. While at first I was consumed with my own safety, my isolation hit home. I watched the other shoppers, the “normal humans” from a distance with jealousy. They were healthy and I was sick. They shopped with gusto, oblivious to me or my condition. It reminded me of moving house. You know that period of time when mentally and emotionally you’ve left your old home behind even though physically you still lived there? The customers, the conversation, the store products, nothing was relevant anymore. I lived somewhere else. I would go home from these brief shopping excursions, no I would run home from these brief shopping excursions and curl up on a soft chair. I wanted to put a blanket over my head and disappear. I didn’t feel a part of the world anymore. I revealed this to my brother Ben. He said: “You know what that is? It’s depression.” He was right, but knowing what it was didn’t help. I couldn’t talk myself out of it.

Practicalities of the Nearly Dead

Goodbye Keanu my multiple myeloma story

Being practical throughout this time was difficult. It was hard to “keep your head in the game” when your head was swimming with anxiety and fear.

      But I had to live my life each day in spite of what I was feeling. I had to get up, shower, exchange pleasantries with my family, go shopping and answer the phone. It all seemed so mundane.

      I couldn’t even bring myself to use my disease as a way to elevate my priority status in society. There were occasions, especially waiting in line at the supermarket that I really thought I should get special treatment as the soon-to-be-departed. I really wanted to push forward and instruct my fellow shoppers to get out of my way.

      “Excuse me. Excuse me, dying of cancer, going to the head of the line.” I would dare even the mums with crying infants to challenge me with a more urgent request.

      Instead I waited my turn, smiled and said hello to the cashier, talked about what a bargain broccoli was that week and never let on that I was screaming on the inside.

      But it certainly changed my attitude to how I shopped. I was happy to buy new jeans and cleverly worded cotton tops for my children. (I always pictured someone sitting at a desk at midnight drinking beer and making themselves giggle over each new witty T-shirt saying they came up with like: I gave up drinking, smoking and sex, the worst 15 minutes of my life, or: I am a bomb technician, if you see me running, try and keep up) But although I made sure my children were attired well, I took a “what the hell for?” attitude towards myself. What did I need a new top for? To be buried in? This led to a sudden worry that I would be buried in a really crap outfit. I had a flash that I was lying dead in the coffin in the emerald green and black two piece suit I got at a second-hand store which I bought to wear as an extra to a wedding in the soap opera Shortland Street. It was still hanging in the back of my closet although I hadn’t tried it on for ten years. I saw the angst on the face of the funeral director as he tried to tug the slim skirt over my middle-aged stomach. I saw him panicking after the zipper broke in his hand. He reaches for the stapler and punches in a few tacks to keep the skirt together. Then he turns the skirt around, leaving a slit in the cloth over my ass for eternity. It was too much. I immediately had to filter out of my wardrobe anything that I literally wouldn’t be caught dead in. The 1980s pink Nike tracksuit, the full-length army green polyester vest, the T-shirt with a picture of Heath Ledger on it, they all had to go. Then I had an inspiration. All my life I had always wanted to wear a gown. I never went to a ball, an awards dinner, or anything I had to formally dress up for. I never even wore a wedding gown. I got married in a registry office and wore a suit. It was pretty and practical but every girl wants to be a princess sometime. This was my chance. Instead of going into the ground in a two-piece emerald and black suit, I would go shopping for a new gown. It made me smile. I may never have worn a gown in my lifetime but I would wear one for eternity.

My thanks

Goodbye Keanu my multiple myeloma story

To all those that have given me this island of hope in a vast ocean of despair I am grateful. I am indebted to those people dedicated to the fight to try and figure out how to cure multiple myeloma and leukemia. From the family of cancer sufferers we thank you. You inspire us all.

Kareen Abdul Jabbar

Goodbye Keanu my multiple myeloma story 

I read about the famous American basketball player Kareem Abdul Jabbar. He was diagnosed in 2008 with chronic myeloid leukemia. He had sought medical advice after getting hot flushes every night. He has been in remission ever since. I have been having hot flushes for years. So when I was waving a fan over my face six months before I was diagnosed I didn’t think it was a new symptom of anything. Now I know. In March 2012 I read the story of rugby legend Jock Hobbs. In 2010 his leukemia was in a chronic form (slow progression of disease), by 2011 it was acute and he succumbed. I couldn’t understand why he wasn’t treated more aggressively during his “chronic” phase until I watched a You Tube clip by a haematologist who explained that the drugs were not effective during the chronic stage. But for those of us out here in the field, in the family of cancer patients, it all seemed too little too late.

      There were days when hearing about people like Jock made me tense and nervous. I grew tired of seeing the words: “a rare and aggressive disorder with poor prognosis” as the first line of every treatise on PCL so I went searching for a better outcome. I started to put in the words “surviving PCL” and “Can I survive PCL?” into the search engine. I was confident I was getting the right treatment. Everyone across the western world was on the same regime, chemo drugs followed by either autologous or allogeneic transplant or both. But the outlook was always grim.

      I was overwhelmingly depressed until I got on the site “Be the Match”. It was a national bone marrow donor registry in America. My sister told me about them. As soon as she found out about my disease she got in touch with them to find out about tissue typing. She joined their registry to be a potential worldwide donor. The first thing that hit my eye on their website was the chart of mortality rates. It showed like 48% of people alive after six years. I slammed my fist on the table as if I had accomplished this goal already. Perhaps I could make it through this? Another site proclaimed 20 % of people had survived 10 years after treatment with chemo drugs and a transplant. It didn’t say what diseases those people had before their transplants. But why couldn’t I be one of the 20%?

                I found another case study that cheered me up so much I bounced to the other side of the room. It was about a 54-year-old woman who achieved long-term complete remission from plasma cell leukemia after being treated with chemotherapy and autologous stem cell transplantation. Fifty-six months after the transplantation she remained in complete remission. She was written up in a study by the department of medical oncology, Yamanashi Prefectural Central Hospital, Japan. The report said:

“Taken together, although primary plasma cell leukemia is a rare hematologic malignancy with poor prognosis, (yes we know, we know) the intensive chemotherapy followed by tandem autologous peripheral blood stem cell transplantation may well improve the clinical outcome.”

      That 54-year-old woman became my idol.

      It was impossible to know what would happen. I knew that responding well to the chemo drugs initially meant that I had a good chance of responding to them again when the leukaemia returned. I was really well and that was a positive thing for going into the stem cell transplant. The biggest things against me were my chromosomal abnormalities. Generally they meant I would not do well for long. But I found a window open in the research on both. So maybe I fit into the statistics or maybe I would be the exception. I could be like the 54-year-old woman or 54 year-old African man, couldn’t I?

      Because I responded so well to the velcade, Alex asked the doctor if I could buy it after my government-subsidised nine cycles were over. (It cost $2,000 a shot). The doctor said yes, but there were other drugs they would be using as maintenance therapy including thalidomide. He also said new drugs were being developed all the time, like a liquid velcade .

      So of course I did a little more googling. Dr Comfort was right. There are lots of drugs under discussion in the fight against multiple myeloma including pomalidomide, carfilzomib, zolinza, panobinostat, obatoclax, daratumumab, SNS01-T and more. They are nearly unpronounceable but very exciting. There are so many new medicines for me to research, vocabulary to learn and trials to watch. I would keep my hands hovering over the keyboard in anticipation. More than that, it gave me a window of light from the cellar of my rare and aggressive disorder. With my poor prognosis and the expectation that I had only two years left to live, the idea that there might be a new drug that worked, or a chance that I could be one of those people who get reports written about them for doing so well, gave me something to cling on to.

A Positive Case to Cheer Me Up

 Goodbye Keanu my multiple myeloma story

Stem cell transplants were a well–established defense in the fight against multiple myeloma. I read about them with macabre fascination. Taking the blood out of one arm, skimming off the stem cells and re-infusing blood into the other arm sounded like something out of Frankenstein to me. From how I understood it at this point, the stem cell transplant went as follows: I would be given a drug to increase the number of stem cells I produced in my bone marrow until they flowed into my blood. Then my blood would be siphoned off, the stem cells would be removed and my blood would be returned to me, hopefully not dusty after going through all those tubes. My stem cells would then be frozen. I pictured a Westinghouse freezer full of little plastic bags of stem cells, some ice blocks and a mince and cheese pie with the tag “Dr Williams-DON’T TOUCH” on it. A few weeks later I would go into the hospital and through high dose chemotherapy and maybe radiation, my bone marrow would be destroyed. The frozen stem cells would be re-introduced into my body through an IV. They would cleverly find their way to the bone marrow without the benefit of google maps or GPS, attach themselves and start producing healthy blood cells.

      It all sounded pretty straightforward and from watching several patients undergo the procedure on You Tube (is there anything that hasn’t appeared on You Tube?) they seemed to cope fine. The biggest danger was going to be when they destroyed the bone marrow. It would kill all of the white blood cells that normally fought infection. During this low immunity time the patient typically got mouth sores, was very weak, had no appetite and hopefully didn’t die.

      My brother sent me a positive case study to cheer me up.  It was entitled: Complete Remission of Primary Plasma Cell Leukemia with Bortezomib, Doxorubicin, and Dexamethasone: a case report. The report was published in February of 2009. The case was about a 54-year-old African American who was diagnosed with plasma cell leukemia. He was given a “novel regimen” consisting of bortezomib, doxorubicin, and dexamethasone. Complete remission was achieved. Although the patient was still undergoing evaluation for either an autologous or allogeneic bone marrow transplant to consolidate treatment. I wondered if he was still alive.