The essay below is Olivia's final assignment for her Massey University Creative Nonfiction paper, submitted 8 June 2018. It's too good not to publish.
The Blood of Others
By Olivia Stocker
There are moments in life, where you pause, ponder, and conclude: I never pictured myself here. Thirty-two, swigging cough syrup in a craft beer bar bathroom, more Fentanyl onboard than Tom Petty, but the only dream worth running down is a bonus bowel movement. This wasn’t the plan.
The Blood
85, 87, 88. Those were our birth years. Three Johnson girls, each a different shade of blonde. Somehow, I had grown from my parent’s genetic mash to be in the back row of school photos. My younger sisters were always front and centre, half obscured by the class year sign they had the privilege of holding.
There’d be days of truly outrageous Pooh Stick battles and games of kick-the-can. In the evening we would huddle on a bed listening to Dad read a poem, or a chapter, or a story. Come bedtime, I would smuggle thirty-year-old Nancy Drew paperbacks under the duvet. As my literary tastes thickened, and night-time antics were discovered, I would lie there imagining I was Batgirl or Buffy. I longed for a secret identity and super strength to save the world.
After school, we’d meet on the asphalt mini-ball court and Mum would walk us home. One day, Hillary had been off sick. Mum didn’t arrive to pick Antonia and me up. Hillary was in the hospital, her right eye puffed up like a nectarine with green juice oozing from its corner. She was only six, clever as clever, but I didn’t want her to stay six for ever and ever. I didn’t want to leave the hospital that night. How would I protect her if I wasn’t there?
I was never afraid of needles. Nor spiders. I was the one to burst forth and retrieve the daddy-long-legs from the strawberry scented Polly-Pocket house. I suspect, looking back, that neither sister feared spiders either. Needles, well, a phlebotomist once sparked Spiderman strength within Antonia. It took two adults and a Sylvanian Families panda to pry her from the waiting-room door handle. We played with our collection for hours that evening.
I recall the three of us crammed in a Mitsubishi backseat, proclaiming our aspirations for adulthood. I can’t remember what my sisters said, but I had decided I would discover the cure for AIDS. “No,” my mother said from the driver’s seat. “Not blood. You can catch things from blood.”
“If you had a superpower, what would it be?” I asked my husband on our second date. We were 17, supervising a junior school dance. He wanted to fly. But how do you help once you get there?
Perhaps it was teenage rebellion, or chasing a flying boy, but I did study Dracula’s drink of choice. Blood is red, white, and yellow in a centrifuged vial. Some cells are pink, purple, and blue, once dyed and examined under a microscope. Here I can see leukaemia and glandular fever; iron deficiency and lymphoma. Here I can see disease.
Blood is a transport system carrying oxygen, proteins, and hormones. It’s a defence system reacting to bacteria, virus, and foreign cells. It’s an emergency system responding to cuts, tears, and puncture wounds. Blood is a collaboration of cells and proteins, enabling the body to function.
I worked graveyard shifts in the Dunedin Hospital laboratory. Some nights, I would hear the battering of the emergency helicopter as it approached the roof. Its searchlight was like the bat-signal shining through the window. I’d tear myself from the microscope, power-walk to the Lamson tube, anticipating the urgent blood samples. In lieu of black leather, I wore a white coat. Unbuttoned and with a strong pivot-step, I could make the tail fly like a cape.
Enough of my incoherent rambling! I’ve stayed halfway up the nostalgic stairs for too long. In a story I have written elsewhere and don’t have the strength to rewrite; Michael and I spread our webbed wings and around the world we flew. There were labs in Brixton and Hampstead, and night shifts overlooking a cemetery in Fulham. In Worthing, with earnest learning, I added transfusion science to my gadget belt. But the belt slipped and kept slipping, as did my faded blue jeans.
Lymphoma, cancer of the immune system. Failed chemotherapy, a feverish 40-hour flight; we hung our broken wings in Hillary’s Wellington flat. I’m a snotty bald shivering mess, and I need a bone marrow transplant. The bone marrow. The birthplace of blood.
Each blood cell begins life as a stem cell within the bone marrow. Like a utopian child, it has the potential to be any type of blood cell, maturing in the marrow, and emerging full-grown, into the bloodstream. Intramuscular growth factor injections stimulate the overproduction of these stem cells, prematurely forcing them into the real world, where they are captured in a bag by apheresis, frozen, and preserved.
This allows oncologists to blast the body with high-dose chemotherapy, killing the cancerous cells hiding within the bone marrow. The captured stem cells are then infused into the bloodstream. They find their way to the empty marrow and, like Californian suburbia, clone and multiply, restoring the blood and immune system. These cells may be your own, but they’re more likely to be the cells of others.
There’s a catch. The donor cells need to be genetically similar, HLA matched, otherwise they will munch the recipient's organs like Pacman who has eaten all the ghosts. The genetics behind HLA marker expression are complex. To save you from my excitable nerdish description, the US National Marrow Donor Program sums it like this:
You have many HLA markers. Half are inherited from your mother and half from your father, so each brother and sister who shares the same parents as you has a 25% chance (1 in 4) of being a close HLA match.
So my sisters have the highest chance of HLA compatibility. If they match me, they could donate their stem cells. Those stem cells could cure me. It’s showtime Synergy.
The Others
When I fell ill, there were offers and gifts abound. Scarves, hats, magazines, adult colouring-in books. Everyone wanted to help, unaware of my super-hero alter-ego. Or just my ego. Both my sisters offered me their eggs for the future. I hadn’t even thought about infertility. Antonia, now an Edinburgh based behavioural analyst who runs ultra-marathons for fun, accompanied me to a chemo session in Brighton. During my cannulation, she hippity-hopped from foot to foot, swayed a little, her blue eyes rolling to white. Hillary, my tiny little sister with her Kirsten Dunst smile, how was I to ask for their help? How was I to ask anyone?
I don’t remember how, but I remember emphatic affirmatives from both. They never questioned how their health might be affected. Antonia admitted her needle phobia was irrational. Exposure therapy was the best way to overcome it. She began accompanying her husband, Scott, to his regular blood donations. “The nurses were more worried about her than me”, Scott recalls. She WhatsApp’d me one morning “It’s just spit! Scott’s signing up too”. Anthony Nolan, a charity managing a UK bone marrow register, had mailed her their testing kit. All they needed was her saliva. In Edinburgh, Antonia spat into her container. In Wellington, Hillary had six vials of bloods drawn. Now, we wait.
Spit. Anthony Nolan. This seemed familiar to me. In London, prior to a mandated NHS heavy-lifting course, some enthusiastic commissioned young presenters had asked for my saliva. I was a shelf deep in Orwell paranoia and couldn’t get a clear understanding of why their white smiles wanted my DNA. I vowed to look into it when I got home. But I never did. With frozen tissue specimens in labs around the world, my HLA profiled for my own purpose, and both parents on AncestryDNA, I reflect on my selfish paranoia almost every day.
My friend Amie had not been so paranoid. We first met in a cupboard designed to be a staff room at the Royal Free Hospital in London. She was reading aloud an absurd Rush Hour Crush printed in the Metro ‘newspaper’. I still think she may have written it herself. We were fast friends, and I was her virtual bridesmaid. In my mind, I was a Hologram. Amie spat into a cup for a free pen during her first-year O’Week, over ten years ago. Her aim at the time was to obtain as many free pens as possible. In 2017, Anthony Nolan phoned her. She was an HLA match for someone in need. Was she still able to donate? After a complete health check-up, four days of injections, and some mild bone pain, she was attached to a machine for six hours via an IV line and captured her stem cells for a stranger.
During those six hours, she recalls “I found myself wondering about the recipient and willing my collection to be bountiful. It was a very humbling experience and at times both happy and sad.” She is allowed anonymous communication with her recipient through Anthony Nolan. If the transplant is successful and both parties agree, they are permitted to meet after three years.
In Wellington, my HLA results are complete. Neither sister is a suitable donor. Hillary matched half the markers, Antonia none at all. “They said it would be harder if I didn’t match,” Antonia said between sobs when I called her. Hillary, at the time, appeared unphased. Now, when I ask her about it, she replies “I think about it still. Being only a 50% match really sucks. I felt guilty that I couldn’t donate. I feel guilty about your disease.”
In an interview for People magazine, Robin Roberts, a Good Morning America host, spoke of her transplant. Her sister, Sally-Ann, was her donor. Robin’s mother made her promise not to favour Sally-Ann over her other siblings.
A fellow haematology patient was relieved one sister matched over the other. He didn’t want to ask ‘that bitch in Australia’ for anything.
Neither of those responses has ever crossed my mind. When my sisters offered their eggs, I wasn’t going choose which sibling to accept. Make it random, or both even, a nice nature vs nurture experiment.
The New Zealand Bone Marrow Donor Registry (NZBDMR) states “70% of patients do not have a suitable HLA matched related donor.” Aside from mismatches, there are only-children, even children themselves in need. Registers are searched to match unrelated donors, and I did have a match. Just one. A woman in Germany.
Why Germany? I knew Anthony Nolan recruited anyone who chanced upon a heavy-lifting course or a fresher fair. Just spit into the cup. Why did New Zealand feel they could rely on Germany? I, Negative Nancy Drew Buff-Girl will bust this conspiracy wide open and implore all Kiwi to donate.
I began investigating the NZBMDR website. Skipping the promotional material, I downloaded their guidelines and read:
NZBMDR is funded to recruit males with Māori or Pacific Island ancestry. Other NZ ethnic minority groups may also be recruited.
The preference for males I understood; antibodies can cross the placenta during pregnancy complicating the donor-host relationship. If funds are limited, it makes sense to restrict the registry to men. But why are funds limited?
I delved into websites and journals. There were diagrams and arrows, and a spiral maze of acronyms resembling a Pynchon novel. I focused on finance, cursing our past blue government. I was about to bombard the Ministry of Health when I came upon the World Marrow Donor Association, a collaboration of 53 countries and over 27 million donors, targeting diverse demographics to expand the chances of unrelated matchings. Germany has 10 separate registers. The UK has six. There are millions of European donors. New Zealand, with its single registry, has around 12,000 donors. 75% are of Māori or Pacific Island descent. My pākeha heritage allowed my donor to be from Germany, others aren’t as lucky.
In this post-Trump, post-Brexit world, I was relieved to find a giving global network. Although I cannot implore all to donate, I encourage anyone with exciting heritage to donate blood and mention the bone marrow registry when you do so. The blood service and marrow registry are linked. That was part of the spiral. See www.bonemarrow.org.nz for further details.
I never received my stem cell transplant. Relapse morphed into disease progression that no dose of chemo could cure. My secret identity is exposed: I’m super weak, reliant on others. I’m unable to save the world.
Works Cited
The National Marrow Donor Program [US]. “HLA Basics”. The National Marrow Donor Program. Web. May 2017. [www.bethematch.org/transplant-basics/matching-patients-with-donors/how-donors-and-patients-are-matched/hla-basics/]
Anthony Nolan. “Who we are”. Anthony Nolan. Web. 28 April 2018. [www.anthonynolan.org]
Parkes, Amie. Personal email correspondence. 2017.
McLaughlin, Hillary. Personal interview. 2018.
Roberts, Robin. How love saved me. By Sharon Cotliar. People. 28 April 2014. 74-75. Web. May 2018.
Blacklock, Hilary et al. “NZBDMR Standards”. New Zealand Bone Marrow Registry. Sections 1 and 4, 2017. Web. [www.bonemarrow.org.nz]
World Marrow Donor Association. Multiple pages visited. World Marrow Association. Web. May 2018. [https://www.wmda.info] [https://share.wmda.info]
Works Read
Collins, Graham P. et al. “Guideline on the management of primary resistant and relapsed classical Hodgkin lymphoma”. British Journal of Haematology 164, 2014, 39–52, Willey Online Library. Web. 28 April 2018.
Norfolk, Derek. Handbook of Transfusion Medicine. 5th Ed. Norwich: TSO, 2013. Print.
Groopman, Jerome. “A Healing Hell.” The New Yorker 19 October 1998. Web. April 2018. [http://jeromegroopman.com/ny-articles/BoneMarrowTransplant-101998.pdf]
NZ Blood Service. Multiple pages visited. NZ Blood Service. Web. May 2018. [www.nzblood.co.nz]
Works Borrowed
The Blood of Others - Simone de Beauvoir
Truly outrageous - Jem and The Holograms
Six, clever as clever ... stay six for ever and ever - Adapted from A.A. Milne
Halfway up the stairs - A.A. Milne
It’s showtime Synergy - Jem and The Holograms
