Of Mending and Manners

No Lifeguard on Duty

It is difficult
when one is drowning
to wave to the people on shore

one wants to be
friendly, of course

but perhaps it is
more important
to keep
swimming

Lois Tschetter Hjelmstad, 1990. Fine Black Lines: Reflections on facing cancer, fear and loneliness.

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The Reintegration Challenge

Being back in the real world has been a treat: the freedom, the friends, the whiffs of pre-c simplicity.

Balancing freedom and caution — that’s been the rub. Deciding which food habits to resume, and to what extent. Which conditions merit exceptions, and how often.

Dairy, coffee, meat, caffeine, alcohol, refined carbs, even grains and beans.

It’s shocking how consuming these decisions can be, how frequently I tackle them and how convincingly I can make myself see both sides of each issue.

But it’s only been two weeks. I’m sure I’ll figure it out.

To Zap or Not To Zap

Five days ’til radiation.

But I’m having second thoughts.

Living the aftermath of chemo — the swollen eyes, the mounting fatigue, the weakness, the aching, the blurriness, frustration and fog — I’m questioning the wisdom of this four-fold onslaught.

Mark’s concerned that turning down radiation and hormone therapy would make me low priority for any relapse treatment.

It’s a tough call.

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Okay, Is There A Carbon Monoxide Leak In this House?

I continued to work through the diagnosis, the surgeries and the corresponding recoveries.

I put my head down and powered through the chemo.

Maybe it’s catching up to me now. Or maybe it’s all my recent celebrating, real-life and staying up way past eight.

Whatever the reason, I’m spent.

Procrastination now drags my daily exercise to almost the full day and, due in part to my hole-falling-into experience on Sunday, I’ve had to replace my daily jog with a second leisurely stroll.

But I’m alive.
And healthy.
And happy.

And grateful.

Stride

I’ve had a recurring dream throughout this journey.

I’m biking on a remote, rural highway, alone. It’s almost dark. I’m without lights, panier, or even a lock. And I can’t believe I’d set out for some destination more than 200km away without any preparation.

In last night’s version, I was on foot. Still alone, on a darkening, remote, rural highway with no supplies and miles from anywhere.

But this time, I made the scary decision to leave the road for a wooded path.

The path morphed into a university library and the librarian held up a line of complaining clients while drawing me a little map.

He told me the path was frustrating but it should only take me 30-45 minutes.

I’m not making this up.

Silence

Chemo-hangover and steroid withdrawal, like icy prods, seek deep sadnesses and chase them to my surface.

Robbed of my fortitude by these chemicals, I writhe.

But I’ve learned, these months, that this darkness will fade.

‘Til then, apt words from Phyllis McGinley…

Sticks and stones are hard on bones
Aimed with angry art,
Words can sting like anything
But silence breaks the heart.

Phyllis McGinley, “Ballade of Lost Objects,” 1954

I’d Skip This Post If I Were You

This morning, my oncologist tasked me with making my hormone therapy choice.

I’ve been reading the horrors of Tamoxifen so I perked right up when I heard the word “choice”.

Here are my options:

5 years of Tamoxifen
Tamoxifen is a 33 year old and very contraversial drug which is either a life-saver or a menace, depending what you read.

Its known side effects include: blood clots, stroke, uterine cancer, endometrial cancer, shortness of breath, weakness, tingling, or numbness in your face, arm, or leg, difficulty speaking or understanding, vision problems, dizziness, increased tumor or bone pain, hot flashes, nausea, fatigue, mood swings, depression, headache, hair thinning, constipation, dry skin, loss of libido, weight gain, cognitive dysfunction, sexual dysfunction and more. Super Scary.

or

A 5 year Randomized Clinical Trial SOFT: Suppression of Ovarian Function Trial (IBCSG 24-02)
If I chose this option, I would be randomly selected to receive one of the following:

  • Tamoxifen (see huge side-effect list, above)
  • Tamoxifen (see above) and Triptorelin (a drug that will suppress ovarian functioning and induce menopause with its own slew of side effects )
  • Exemestane (an aromatase inhibitor) and Triptorelin (see above)
    Apparently Exemestane has been shown to be 2-4% more effective in decreasing recurrence and spread of breast cancer in post-menopausal women. Unfortunately, its side effects are, anecdotally, much more severe than Tamoxifen’s. Super-Duper scary.

And don’t even ask what’s behind door number 3. I made that mistake.

I guess being a chubby, depressed, moody, sexually dysfunctional air-head beats being dead…
If I don’t get the deadlier side effects, that is.

As my good friend Mary would say, awesome.

I See Dread, People
10 Small Talk Tips for Cringe-Proofing One’s Future

I’ve had more than my fair share of fabulous reactions to my diagnosis. Tonnes of people have been wonderfully real with me — and wonderfully supportive.

These people have turned what could have been pure nightmare into a long-lasting lesson in generosity and friendship.

I am truly grateful.

That being said, OMG, I’ve had some hilariously inappropriate reactions.

I’m far from a guru of social graces, but I just have to chuckle at some people’s obvious dread of interactions with me — and their fumbling attempts to hide that dread.

I know I’ve made big mistakes in the past and I cringe just thinking about them.
So, I’ve compiled the following handy list of Ten Small-Talk Tips for Cringe-proofing One’s Future. And it’s free!**

  • If you don’t know what to say, simply say so — and save us both from whatever you’d blurt out otherwise.
  • If my diagnosis scares you for your own health or that of a loved one, share that fear with someone other than me.
  • If you’re imagining terrifying possibilities for me, keep them to yourself.
  • If you know of survivors and therefore think my situation is a walk in the park, put yourself in my shoes for two seconds before you decide to treat me as such.
  • If you’re afraid I may keel over dead during our conversation, maybe it would be better just to smile, wave hello and keep walking.
  • If you follow my blog because you care, but just not enough to send the occasional comment or email to respond to my story, don’t mention my blog when we meet in person.
  • If you follow my blog out of morbid curiosity, and therefore don’t send the occasional comment or email to respond to my story, don’t mention my blog when we meet in person.
  • If you’d rather not know how I’m doing, don’t ask.
  • If you have no idea what I’m going through, don’t assume otherwise.
  • If you think that not acknowledging my situation is a brilliant social tactic, think again.
  • Bonus Tip #11: When in doubt, try genuine good wishes, a smile and a heartfelt hug.

Or, ignore all of the above — and provide me with hours of comic relief.
I’m happy either way.

** Although I am charging big bucks for the names associated with each tip.

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Pondering Patterns to Peace

Prior to this journey, I had a long-standing, comfortable, mutually supportive, fun, close relationship with exactly one member of my family.

My sister, Linda.
In Boulder, Colorado.
Three thousand kilometres away.

That’s one out of 78++ family members:

  • 4 direct family members of mine
  • 4 direct family members of Mark’s
  • 18 maternal first cousins of mine (a hint of one promising relationship)
  • 52 paternal first cousins of mine (one friendly but distant relationship)
  • my 35+ aunts and uncles
  • not to mention Mark’s cousins, aunts and uncles.

During the first five months of this journey, long lost cousins Tracy, Kathi, Betti and Stephanie have found and chosen to follow this blog and have offered hints at new beginnings and good vibes.

One very special cousin, Kelly, has become a pillar of emotional support, providing frequent and dependable doses of cheerleading, wisdom, humour and good company. She has become a huge part of our little family.

And without a single physical meeting or even a phone call, my long lost Aunt Barbara has become as much an aunt to my own girls as they have ever known.

This burgeoning renewal of faded childhood connections has been nurturing, healing, educational and warm. And I am immensely grateful.

Yet even the failures at reconnection have been educational.

Some of the most intriguing and thought-provoking phenomenon have been the reverberations — both positive and negative — of my diagnosis on the most painful, ever-present histories, lurking hurts, disconnections, uncommunicated expectations and disappointments of the relationships with 7 of our direct family members.

This morning, as Mark joined me for my morning Gratitude trek, we tossed around our impressions, observations and feelings about the dances that have grown out of my diagnosis and the five distinct Patterns to Peace which have naturally emerged:

  1. Instantly Committed — Hands On
  2. Instantly Connected — Hands Off
  3. Unchanged — Innocuous
  4. Cautious
  5. Unchanged — Destructive

Perhaps you’ve seen similar patterns in your own experiences?

It’s a long conversation but it’s important for us to share it. We hope you will give it a listen and that you’ll grant us the privilege of your thoughts, below.

Thank you for listening.

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I don’t know why, but that’s it

I don’t know why, but that’s it.

For the first time since my first surgery way back in October, I’m throwing in the towel and going right back to bed. No juicing, no supplements, no exercise, no shower.

I know it’s chemo and I’m grateful to be doing as well as I am.

But I’m outa here and I mean it this time.

I don’t need a justification (I’m living it), but if you do, here’s a partial list:

  • two days of throbbing aches all over, numbness, disorientation, weepiness and stomach woes – no appetite, limited taste, sore throat, tongue, ears, teeth, head
  • two nights of writhing in pain and delirium
  • one thawed canal
  • one slushy, grey world
  • two thread-bare, ten year old boots soaking two already aching feet with icy slush
  • one first ever sleeping pill at 3am this morning
  • one puffy, quickly aging, eyelash-free face
  • one transmuting port-a-cath
  • and did I mention our insurance company and broker are both robbing us blind and ruining our lives?
  • oh ya, and the police knocked on our door early this morning informing me that I’m due in court April 28 and 29 as a witness against my bully of a “father” as a result of his attempt to break in to our home on April 5, 2009?

Is that a reason? I mean, is that a reason?

Oh, and today’s my half-birthday. Which means it’s six months since this all began. Halfy Birthday to me.

From the Mouth of Bayla #7: BULLIES

When you’re in the gym getting ready for the walk over* and one of your WORST enemies is bullying you, you don’t really want to go tell your principal because you are kind of too tired to go from the third floor to the gym to the first floor so you just yell to a counselor that he is being mean to you…again. Your mom has cancer and you are putting up with: being hit in the back, being kicked, being laughed at and when you finally get an appoligy this is what it sounds like: “I am not sorry.” WHAT? I don’t think so!

*walk over is a walk to after-care and until everybody is there, you stay in the gym of your school and you wait in line with your friends  (bullies are there in line too so they always start to bullie me Lucy and two other friends.)