Diagnosis Day

The cancer clinic is cheerful – if you can get over the name everywhere. I can see the point of euphemism. We wait till about 10.30 – sealed windows and stale air. I long for a breeze and birdsong.

In comes my “cancer team,” which seems the cart before the horse as I haven't yet had a diagnosis. “Tracy” takes my medical history and asks if I want counseling or a spiritual advisor. Have I got children – and where? On hearing South Africa, England and Vancouver Island, she renews counseling offers. Yet, I don't know how I feel as I don't yet know what is wrong – except obviously not good.

“Anxiety? Depression? PTSD?” Her pen hovers hopefully. No, just life. I feel fine. Surprisingly, I feel calm and coherent. Dr. M. comes in, looking weary. It can't be easy for him.

“We found something.” Waldenström macroglobulinemia, a type of lymphoma (blood cancer). He says it is “indolent”, lounging around, not getting on with it. So there is no hurry for treatment. The next step is a bone marrow biopsy, which he can do today or later. He explains the chemo, but says because of the indolence, watchful waiting is best now. He is going on holiday, so we set up a date in late June. Oddly, I feel numbly calm and able to both comprehend and remember what he said.

We stumble into fresh air and sunlight, walk back beside the lake to the car. George Duhamel's question I have been trying to answer since I was 15 and studying high school French, came back to me. “Is it better to be sad on a rainy day when the world weeps with you, or on a brilliant sunny day, that mocks your grief?” I asked it driving through sleepy English villages, basking in spring, driving my father to my mother's cremation. I ask it again now.

We head to Google when we get home. Waldenström macroglobulinemia is very rare: 5 in a million get it and then mainly white males. Only I would beat those odds to get a double-barrelled disease complete with umlaut. You don't get rid of it, just manage it. Chemo etc. will control not vanquish it. According to Dr. M., they will watch my haemoglobin. The cut off for action is 100; I am at 103, down from 108 a month ago; 120 last year.

Still feel calm, though my head is bursting with facts. Somehow, I still feel it will be OK. Not the usual OK meaning fine and well, but OK.

The kids are marvellous and the phone goes all afternoon – till my head buzzes. Bill is very quiet, wrapping me in kindness and hugging me. I tell my close girl friends by email as I feel too overwhelmed for more talking.

Strangely, I don't fault my body. If this had been a lump, perhaps I would see it as an enemy, want to expunge it. But lymphoma is everywhere, right through me. War and hostility is so against my nature that I can't see this as a battle. Rather, I am sorry for my red cells that have lost their way and their ability to turn themselves off. I feel gentle and kind – and see treatment as helping my immune system regain its power. I am sorry for my beleaguered body, that has been overworked and bullied by life – I want to extend kindness and hope.


Note: I am writing this in the hope it will help someone else. Not because I feel I am interesting, but I keep remembering how my doctor at the Pain Clinic thanked me for blogging my path through pain. She told me that it was very helpful to see the other side of the equation – and understand pain from the inside. Now, at the start of another journey, I can see clearly that what will get me through is morale, how I approach this and how I guide my underlying thoughts. Pain now turns out to gave been a blessing because it has forced me to do much of the work in advance.

Throughout this blog, I have referred to my husband as Bill – the name I gave him for privacy when I wrote a weekly column. Now, with his permission, I will give him his real name, Mike.

 

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Great Unknowing

Today, while having coffee with friends, the phone rang. “Dr. M wants to see you at 9.00 tomorrow morning.” Unexpected, yet not. In March, a routine blood panel had come back with a low blood count across the board. My GP waited a month and then ran another test. The numbers hadn't moved.

My GP checked off on her fingers: iron levels good, so not anaemic; B-12 good; kidneys OK (not sure of their relevance). “It looks like a bone marrow issue.” She looked hard at me. And referred me to a hematologist.

Waiting and wondering is always tough. We have been here before with a thyroid cancer scare. It's an odd feeling – in limbo – knowing that be tomorrow I could be soaking in a bath, relaxed with relief. Or stunned and trying to adapt.

Being me, I wrote it as it is always my way of clarifying and coping. These are my unedited diary notes:

Thinking about it makes it worse, more definite. Yet not thinking feels risky, slipshod as if worrying in itself is a protection.

When I got up this morning and dragged my back out of bed, finding a positive spin to the day seemed irrelevant. Life was larger than petty decisions. The canvas I am about to draw on may well turn out to be so big, that today's small choices are irrelevant. Determinedly not thinking belittles the gift of life.

Suddenly, clarity: what matters is not where the path leads; it is how each step is trod.

The bigger viewpoint – up and away till I am so small in the greatness of creation. The only thing that makes sense is the HOW of living – wherever it takes me. I hope that will be enough.

And so the next day, we sat with Dr. M., a friendly Brit, which caused an immediate connection. In my physical exam, all was good. He looked thoughtful.

“Leukaemia?” I asked, hearing the word drop into the silence.

“Could be. It's on the list but way down. You would be feeling ill by now.”

He ordered a slew of tests and asked me to come back in two weeks. Our two younger kids would be staying then. We only see them once a year as we live in Ontario and our daughter and family live in England; our son on Vancouver Island. So that week is special and I wanted it sunlit, not filled with foreboding and discussion.

There was no hurry, he assured me, so we made an appointment for the end of June. “If I see anything worrying, I will call you.” And he has.

Notes from my journal:

Not sure what it means, but felt very still and that it would be OK. When I asked God for guidance, I just got a calm “no need.”

The only important thing is to handle this with courage and grace.

Why? We are all part of a greater grace.

Tomorrow at 9.00.

 

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To Believe or not to Believe

Raising kids without religion – should we? We didn't take ours to church because we grew up in the shadow of Anglican sin. A hopeless starting point of failure. Tie that in with so much historical abuse and taking them to church was a tacit support of the system.

Our 6 year-old son summed it up one Boxing Day, when he announced he was an atheist. He was savvy enough to wait till after Christmas, just in case. “Our teacher says God is everywhere. I don't like going to the washroom with God.” Our daughter then explained her solution: “You tip the loo seat lid up against your back and He can't see down.”

It was Richard Dawkins who liberated me from servitude to sin, the burden of the crucifixion and the hopeless belief that whatever I did it could never be enough. But there was a flatness, not to mention anger, in his writings that repelled me. A missing patina; the rich tapestry of life lost in statistics and studies.

Bill Moyers interviewed both believing and atheist writers at a conference some years ago. What struck me most was the difference in affect between the two groups. The atheists, lucid and charming, were brittke like dried sticks; the religious had a peace and gentleness, with calm faces that looked freshly ironed.

When we, as I do, identify as spiritual rather than Christian (or similar), it's that peace we seek, whether through, yoga, meditation or walking in the woods. Losing that sense of a greater intelligence, a calmer being is a barren emptiness of the soul.

I don't think you can leave children spiritually rudderless in life – to choose when they grow up. They need the anchor of belief in something bigger than themselves. A touchstone for their journey through life – otherwise, what is the point on the hard days! Why do I get up each day and try to make something worth having out of pain and exhaustion?

To be honest, I do cheerfulness for Bill, but for real happiness, we need purpose, a story worth building life around. Norman Vincent Peale wrote about one of his parishioners who found God “and now she has a corset factory.” Not quite what I had in mind!

No, I don't believe in a higher power to get things, like the United Church minister who said it was fine to pray for a summer cottage. I believe in a greater soul and that every act of love, courage, honesty and compassion is building God by whatever name. And that is what, if I did it again, I would want to teach my kids.

 

http://www.huffingtonpost.ca/james-di-fiore/atheist-parenting_b_9772014.html

With or Without God by Gretta Vosper

 

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To Believe or not to Believe

Raising kids without religion – should we? We didn't take ours to church because we grew up in the shadow of Anglican sin. A hopeless starting point of failure. Tie that in with so much historical abuse and taking them to church was a tacit support of the system.

Our 6 year-old son summed it up one Boxing Day, when he announced he was an atheist. He was savvy enough to wait till after Christmas, just in case. “Our teacher says God is everywhere. I don't like going to the washroom with God.” Our daughter then explained her solution: “You tip the loo seat up against your back and He can't see down.”

It was Richard Dawkins who liberated me from servitude to sin, the burden of the crucifixion and the hopeless belief that whatever I did it could never be enough. But there was a flatness, not to mention anger, in his writings that repelled me. A missing patina; the rich tapestry of life lost in statistics and studies.

Bill Moyers interviewed both believing and atheist writers at a conference some years ago. What struck me most was the difference in affect between the two groups. The atheists, lucid and charming, were brittke like dried sticks; the religious had a peace and gentleness, with calm faces that looked freshly ironed.

When we, as I do, identify as spiritual rather than Christian (or similar), it's that peace we seek, whether through, yoga, meditation or walking in the woods. Losing that sense of a greater intelligence, a calmer being is a barren emptiness of the soul.

I don't think you can leave children spiritually rudderless in life – to choose when they grow up. They need the anchor of belief in something bigger than themselves. A touchstone for their journey through life – otherwise, what is the point on the hard days! Why do I get up each day and try to make something worth having out of pain and exhaustion?

To be honest, I do cheerfulness for Bill, but for real happiness, we need purpose, a story worth building life around. Norman Vincent Peale wrote about one of his parishioners who found God “and now she has a corset factory.” Not quite what I had in mind!

No, I don't believe in a higher power to get things, like the United Church minister who said it was fine to pray for a summer cottage. I believe in a greater soul and that every act of love, courage, honesty and compassion is building God by whatever name. And that is what, if I did it again, I would want to teach my kids.

 

http://www.huffingtonpost.ca/james-di-fiore/atheist-parenting_b_9772014.html

With or Without God by Gretta Vosper

 

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Also Blessed to Receive

One who knows how to show and to accept kindness will be a friend better than any possession.

Sophocles

 

Two of my closest friends are struggling with cancer. So when I saw Radical Remissions, I picked it up. Kelly Turner, the author, has researched authenticated cases of remissions or cures from cancer.

She found one key factor to recovery is accepting love and support. Not just receiving the neighbour’s casserole, but accepting it with a grateful heart. Not as easy as it sounds, We like giving, but are uncomfortable being given to. Charity is a dirty word. No wonder the Bible says it is more blessed to give than to receive. None of us like being beholden.

A friend whose grandson was badly injured in an accident, said wearily how exhausting it was being grateful – for fundraisers, prayer vigils and other community kindness. She was touched and helped, but in our modern society being indebted is a burden.

Ben, living in a poor, black, rural South African community once asked me why my widowed father lived alone and not with me. I tried to explain he wanted to be Independant – to be met with blank incomprehension. Why would he want to live icily alone on a different continent? I couldn’t explain and I felt ashamed of our Western culture.

What happens when we open our hearts to receive? How do we change? Who do we become? Warmer, softer, grateful, not just to those who helped us, but to a world where such kindness can flow. Humbled, because it takes humility to accept help. Healed, if not physically, emotionally. You only have to watch the grace of cancer sufferers who have found community and courage from their friends’ support. To the point they can say, from their hearts, “Cancer has given me a blessing, been a wake-up call.”

My mother always pushed gifts aside: “Don’t let the children waste their money on me.” I always countered, “It’s exactly what they should be doing.” How else will they grow up to be decent, generous people?

Her attitude was catching, so this Mother’s Day, I determined to change – be more open and accepting. Was it just coincidence that this year, the kids went overboard? Or that a child I helped years ago burst out of Facebook with a Mother’s Day tribute?

Or synchronicity – a friend who is a minister, out of the blue, explained how we need to love ourselves to be able to give love to others. Janice Pascual talks about our receiving capabilities being jammed. Mine were wooden with disuse – I had got used to evaluating my day by what I have done for others. I never realized how I was denying others the richness of generosity. I learned that accepting opened a faucet in my heart which flowed on out to everyone I touched.

A boy with cerebral palsy, who could only write with a pen held between his teeth, summed it up. “I am so lucky with my CP that I only see the best side of people.” He’s right – people are at their kindest, competition stripped away when they help others worse off. And he had the insight to accept this as a blessing.

And I find that when I allow myself the vulnerability to accept help, I am also more able to hand it on.

 

Radical Remissions: the Nine Key Factors that Can Make a Real Difference by Kelly H. Turner, PhD

Radical Remission website. Search by cancer type for personal stories of people who have beaten the medical odds by going into remission or their cancer has gone away or submit your own – link

Tiny Buddha – How to Receive Gratefully, instead of Rejecting Kindness by Janice F. Pascual – link

 

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When Enough is Good Enough

Sure fire way to make a big decision? Ask an algorithm. Hiring a secretary, choosing a wife, buying a house, the optimal method is to see a certain number (actually 37% of your possibles), but don't make a decision yet. Just note which is the best so far, then choose the next one you see that is better. Apparently, it works every time.

I prefer to call it common sense – or good enough. The relief of reading a book on parenting, expecting to recognize all my failures, and be told I just need to be a “good enough” mother. Am sure a relaxed “good enough” mother will do better than an endlessly striving one.

Looking at our major decisions, we would always go for 90% of what we wanted – and decide to like it. So why did I go on and on looking for a pain solution round the next corner? Chasing a dream. In algorithm speak, I was wasting time and resources.

Then, when I decided enough, what happened? Not despair, but relief. It is a burden fighting – and destructive. Full of “shoulds” and judgment, teased by the recurring doubt “is it all in my head?”

“Trying” made an enemy of my body as I offered it up to be bullied by yet another expert. Keeping a pain diary, though we are always told to, is counter productive as it keeps pain in the front of your mind. Recurring “failure” made the resulting pain like being on the rack – punishment. For what? Being physically or psychologically weak? Another pain book, hinting “do you want your pain?”

Giving up allows me to look lovingly at my battered body. To live kindly with it. And to live beyond it – in uncharted waters where I am “good enough.”

 

PS. Have you noticed that the appropriate book always turns up at the right moment? I wonder if there's an algorithm for that?

 

More info:

Algorithms to Live By: the Computer Science of Human Decisions by Brian Christian and Tom Griffiths

 

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Murphy Reigns

Having spent the last 24 hours battling bureaucracy, I think it is time to update Murphy's Law.

Our grandson is trying to switch from a South African University to a Canadian one. Simple? As he's in the Southern Hemisphere, along with bath water running out the opposite way, the school year is also back to front.

Simple to fill in the forms, get transcripts and apply? His current university had student strikes last year, so the December exams were in February; the results late March. Still weeks to the April 30 deadline. Except the transcript office is closed till May 5 – not just closed but disconnected while graduation certificates are issued. They too are late, which explains the backlog.

Finally, he gets his informal transcript, which the Canadian University won't accept. After hours on hold (helicopter grandmother?), I get a woman who says they will accept the temporary transcript if faxed with a letter from the South African university. Email grandson and sit down with stiff drink.

Only problem now is they are seven hours ahead and a long weekend starts tomorrow. Frantic email from grandson: the university won't write the letter.

Stiff coffee and the phone again. Worse than tax time. Call overseas admissions, and get an unintelligible (from overseas?) voice. Hold till he comes back with a number for me to call. I write it down carefully. Then look at it. “This is your number. If I dial it, I will get you.” “Yes,” he replies, with an air of having solved everything.

Bill takes over and does a telephone slalom. Busy, out, away till 5 May, not allowed to act… Finally, a common sense individual who agrees to tag his file and add the transcript when it arrives.

So my amended Murphy's Law:

Whoever you need to speak to is out/on vacation/assisting other clients

If they are in a different time zone, it is one where everything is shut

When their offices open, yours are shut

A crisis always happens on a Friday, usually before a long weekend. This also applies with small children getting sick.

If you go to an advised website, the interface has been upgraded and doesn't match the instructions

If you need a computer program to do something useful, the app has been improved and your particular task discontinued, usually just last week

If you need info in a hurry from your computer, it announces proudly that it has improved your security and needs your password, which you have lost. You make a new password, which is rejected because it is too short, is already in use, doesn't have caps/numbers/you name it. When you finally get the info, the original site has timed out, taking with it all your info

The bright side is that my vocabulary is greatly enhanced, my character supposedly built and with luck the problem solving has reduced my chances of dementia.

But our grandson still hasn't got his transcript.

PS Murphy was an optimist!

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