It’s amazing how long one can stare at the screen. The words and stoicism for this post didn’t come till now and the terror still hasn’t stopped, and, mainly, coming to the decision to publish this at all, AT ALL, has been a long and tortuous route.
Today I read a post from a lovely girl whose blog I enjoy, who had a nasty experience with a customer accusing her of making silly crafts with her children and buying over-priced Christmas trees instead of tending to her shop. Behind the scenes, behind the two lovely post of crafting with her children and buying their Christmas tree, this mother of four young boys, (one of them a newborn), dealt with sick babies, volunteer hours at her son’s school, answering emails, running a business, preparing for her eldest’s birthday party, nursing round the clock, staying up till 2am fulfilling orders, and a million other things not reflected in those two blog posts, and I thought, yeah, that’s it right there, mostly what I show here is the lovely side of my life, and I do that purposefully, because it is also MY refuge from the occasional trauma of my day to day. But there are some things that take us out of our lovely, bucolic romanticism and plonk us squarely on the cold, cement floor of life…on our face…naked and exposed.
One such thing happened mid September.
Remember way back when I checked myself into surgical daycare to have a tumour in a saliva gland removed? Remember how these things are 99.9% benign? Well, this one turned out to be the .1% malignant! And thereby ensued months of terror, reflection, a new relationship with my malfunctioning body, with therapy, with specialists, with the conveyor belt which is the BC Cancer Agency, with my family, with the people I trust.
As soon as I received the diagnosis, I told my children and Robert and my mother. My children understandably panicked with fear for my life, but Robert and my mother stayed level headed. My mother then said something to me. She said, “we have to take it as it comes.”
Later that week, C and I were at the grocery store, and a lovely blond woman said hello to C. They exchanged a few sentences and then she turned to me and said, “Oh, are you out and about? How are you feeling?” with an incredibly concerned voice. I must say that my first initial reaction was to grab C’s hand and back away slowly from this “mad” woman, but then it dawned on me that she was a relative of my son-in-law’s and by virtue of my telling Kers, his family knew. And then I knew I didn’t want to tell anyone. I wanted to control the dissemination of this info. I didn’t want the sympathy, the platitudes, the awkward gestures from people who just didn’t know what to say…how to cope, and mainly, I didn’t want to be seen as different, as “not me”. Does that make sense? I does in my own mind.
But now that I’ve coped, now that I’ve come thru this and out the other end of the conveyor belt, I can talk about this. So I invite you to use my vast bank of experience and knowledge if you need to. Ask me anything. We’ll talk about this once, right here, and then we’ll forget all about it and get back to our lovely lives, but you’re welcome to ask me again, whenever and if ever you need to.
The word “cancer” is a horrible word. I have trouble saying it. Robert suggested that I call it wonky cells…because, after all, that’s all they are, just a bunch of wonky cells…and that’s what we’ll call it. It’s not a battle, it’s not a dragon to be slayed, it’s just a bunch of wonky cells who have no thought, no emotion, no purpose except to replicate. As a matter of fact, they don’t want to kill this organism which is my body, because then they would also die. They just need to be delicately and forcefully removed and persuaded never to come back.
This type of wonky cellness is called Adenoid Cystic Carcinoma, and it’s exceedingly rare. It makes up 1% of the rarest 5% of all wonky cellnosity. Now don’t go looking it up on Wiki, you’ll only upset yourself. The main thing to remember is that it is highly responsive to radiation therapy, it hides and travels thru nerves, and this tumour had only a 30% breach of its lining, so probably not a lot of cells managed to travel thru the nerves and to my brain. I went and visit NeuropathyReliefGuide.com and learned about how to repair nerves.
The several tests, CT scans, MRIs, didn’t show any metastasis or any other clusters in lymph nodes or other glands, so a course of largely preventative radiation therapy was undertaken with daily one minute doses for 37 treatments.
As usual, I found my solace in art. Robert, again being my saviour, strongly suggested I keep one of my art journals throughout the treatment, and at the very last minute, I ran down to my friend Dalyce’s second hand book store, and bought a book. The book I chose I chose for the name, “sense and nonsense”. I liked the small pocket size, I liked the calm blue cover, I liked holding a random book (which I knew nothing about), I liked how it felt, I liked the randomness of it all, the having to take it as it comes. I counted the pages and worked out that gluing every four pages together would give me enough pages to complete my course of treatment plus a couple pages to spare. The book was written by Eric Patrick Nicol; a Canadian writer of some 40 books (none of which I read or knew anything about). I’m ever so grateful to Mr Nicol for his work and for this book. I do believe it saved my sanity, and my knowledge and sharing of it may possibly go a long way towards helping others trying to cope thru the devastating fear of a wonky cell diagnosis.
So, what follows are the pages of my journal. I’ll try to describe the days briefly, but feel free to ask me any questions you like. Feel free to have these images for whatever purpose, but please remember that this original book is the intellectual property of the estate of Mr Nicol…to whom I owe a huge debt of gratitude.
As you probably already know, I’m luckier than most people. Both my parents are/were doctors, all their friends are doctors, and I’m an only child. Than means that every course of treatment, every test, every decision was shopped around a consortium of doctors before it was agreed on.
One of the best things I ever did was join a wellness centre called Inspire Health and upped my yoga, my meditation, my creative visualisation, and researched all supporting natural remedies.
So for anyone who must undertake a course of radiation therapy, let me very strongly advise you to take daily doses of 3000 iu of vitamin D, super critically extracted turmeric, a very good probiotic well ahead of time and all the way thru to boost white blood cell production, and form a relationship with miso soup, which is shown to dissipate radiation toxins out of the body.
And keep a journal. For you that might look very different from mine. But sitting around in waiting rooms, feeling scared, looking at the devastatingly sick and suffering people around, their grey faces, their panicked but stoic expressions, it’s very helpful to shut the world out and concentrate on your journal.
Working thru the days in my book I found words which said something about the way I was feeling each day. I circled the words, sketched a drawing which felt right, and outlined everything in a sepia ink pen.
These were simple tasks to do while sitting in waiting rooms.
I took my supplies with me in a pencil case in my purse, switching out the coloured Faber-Castell markers to suit each day.
Some days were optimistic, some days less so. I drew my feelings around Mr Nicol’s words.
I think one of the hardest times was seeing children coming in from Children’s Hospital for radiation treatment since Children’s doesn’t have radiation chambers. Another difficult thing was waiting for radiation symptoms to come on and dreading each twinge.
It took to me the first week before I felt I could open my eyes in that radiation mask and actually watch the machine sweep past me. The mask is tight, locked down to the table one lies on and breathing is somewhat restricted. The feeling of stuckedness, of vulnerability, of claustrophobia are acute and real. Meditating thru the few minutes of one’s confinement is very helpful. I tended to visualise myself walking thru a semipermeable membrane, which allowed my body thru it but not the dark, smoking wonky cells, which fell down to the ground behind me.
The days leading up to Remembrance Day were difficult. Most of you know my father was the doctor for the BC war vets and he took them to places such as Vimy Ridge and to meet the Queen, and most of you probably know that he died before his “old boys” of a terrible terminal cancer. Actually, the only two episodes of wonky cellness in my family, my father and my aunt, were both discovered too late and terminal within two years.
The days post R.D. I felt a sadness which was hard to shake. But I went for an acupuncture treatment at the wellness centre and that helped me flip back to a more positive outlook.
The second week into treatment, as with most people who have radiation in the region of their head, my taste buds started to shut off and die. The first taste which went was salt, then sugar, then, gradually, everything began to taste like a mix of alkaline water, (that sulphuric kind you get at hot springs and certain spas) and flour mixed to different degrees of texture.
It’s funny, you know. You can blindfold yourself and experience what it’s like to be blind to some degree. You can stuff cotton in your ears and feel a little deaf, but you can’t possibly understand what it’s like to lose your sense of taste because there just is no reference point. No way to test it out before hand.
I can still acutely feel sitting at the sushi bar with Clover and dipping a piece of California roll into some soy sauce. The character of the soy sauce turned to the most horrible bitterness in my mouth. Very unexpected.
By the 21st on November everything tasted foul and the only thing palatable was my Earl Grey tea with a heaping spoon of super sweet Stevia and another of Manuka honey, miso soup, toast without butter and, for some bizzare reason, tempura prawns.
Midway point and a private little celebration. I bought myself a few beautiful coffee table books. I was also offered the radiation mask to take home after treatment. My initial reaction was, “not a hope in hell!!!”, but I had a think about it. I didn’t change my mind because taking the mask home would have put the onus on me to dispose of it. The material is not recyclable, it would take too much effort and (by now my rapidly diminishing) strength to cut it up, and it would have to hang around till the spring time till I got to the cabin to burn it safely, (still releasing toxic plastics into the atmosphere). No thank you. I captured the mask on these pages instead. It can stay here too.
Into the final half of treatment I began to think about how “normal” my new life was feeling. Daily drives across town for radiation, lack of taste, losing weight, avoidance of meals, while still trying to run the household and my business, while keeping my children, my family, my relationship with Robbie a priority, while trying to distract myself with TV or the computer to try to eat revoltingly tasting foods, which often trigger a gag reflex, in an effort to nourish myself. Robert helped again by telling me to focus on foods as necessary medicine.
I remembered my father and my aunt going thru chemo, barely strength enough to walk, how quickly we adopt a situation to a new normal. Some chronic fatigue hit at about this time. But sleep is restorative, so I happily gave in.
November came to a close and December took its place and with that a new focus. Christmas lights went up in the hood, trees in windows, carols on the radio…a much happier state of affairs. I also focused on my art more. My precious gift of creativity which saves me time and time again.
I counted down the treatment days. Nine, then eight more to go. Life seemed a bit more uplifted even with worsening symptoms. I also focused on and counted my blessings when I got too down.
And poured my feelings into my book. Each day Mr Nicol came thru with brilliant words that felt just right, and on the pages which fell on the book’s illustrations, I created myself little collages.
All thru this treatment I was under that care of an oncologist, as is expected, and a psychologist. The very rare and not understood nature of this wonky cellness made it difficult for me to relate to any other person. As far as I know, there is one man, who is ten years post treatment and doing exceptionally well, here in BC and 20 more across Canada. It left me feeling very alone and, I must admit to having stupid thoughts like, “why couldn’t I have had breast wonkynossity and be part of a better understood crowd?” How stupid am I? I did slap myself out of that!
The skin on the left side of my neck gradually changed, became frail, wrinkly, red, flaky, but thanks to the heavy doses of turmeric and the miso soup, and, I suppose, thanks to my oily Mediterranean skin, these symptoms were not as bad as some of the people’s going thru similar.
But with only four treatments left, things were beginning to look more positive, more survivable. Robert arrived, and it isn’t only me having to hold down the fort. He held my hand on the evening of Friday Dec 12th and said, “just think, this is the worst you’ll ever feel. Things will never be this bad again.” Two days to recover over the weekend, and three treatments to go. By now the nerves leading from my jaw to my brain have been so affected that yawning, sneezing, blowing my nose are various degrees of excruciatingly painful. But pain or no pain, how lucky am I to live in this time, in this city, with access to government funded medical help, with a treatment which has been modernised, a treatment, which as early as ten years ago, would have scattered a dangerous 66 grays of radiation over my entire head, neck and chest, which is now confined to and pinpointed to complete accuracy within one computer controlled channel thru the brain. And above all, how lucky am I for my mother, for her medical knowledge and council, for Robert for holding me up day or night, for his positive loving guidance, for my precious Chloe, who never left my side, insisted on accompanying me to every treatment, with the exception of three which she couldn’t manage, joked with and befriended the team of technicians, helped to decorate the radiation ward Christmas tree, and for Jonathan and Kerstin who checked in on me and showed loving concern despite their own busy lives. They have been the bright shining stars in my life for these past months.
Finally, the last two days, the last day, and my normal was about to be restructured into a newer normal.
And now, the normal is that of recovery, of regeneration, of health, of life, of happiness, of reduced stress, of fulfilling dreams, hopes, of love, of love for my strong, healthy, wonky cell free body, for my children, for Robert, for my mother, for friends, a new normal of living a long and happy life.
We have to take it as it comes.