Acquiring a Taste for Bittersweet

Apt musings from The Mysterious Benedict Society:

“It’s true,” Sticky said. “Everything has been bittersweet.”

“Maybe we should acquire a taste for bittersweet,” said Reynie with a grin. “Then everything would feel wonderful.”

“That’s stupid,” Constance snipped. “If it felt wonderful then it wouldn’t be bittersweet, would it?”

Reynie only shrugged. He wasn’t at all sure about that.

The Mysterious Benedict Society and the Prisoner’s Dilemma
Trenton Lee Stewart, 2009.

For Better or For Worse#4 Woohoo!!! March Break!!!

BBBRRRIIIINNNGGG!!!!! goes the school bell on 3:30, Friday, March 11th, 2010; it signifies (much to the delight of the students and teachers at our school) the official beginning of March Break. HOORAY!!!!!

Three days later, we have already: slept over etc. with girl’s night out, gone to a friend’s house, slept over at another friend’s house, had a day of relaxation, gone to Bruce Pit with some friends, made bath bombs, read-lots, and written posts. Still on our schedule is: spa day, candle making and more-even going to Toronto!!!! WOW!!!!! I LOVE March Break!!!!

Happiness is…


Eleven days after my First Surgery

This gruesome* photo was taken 11 days after my first surgery (Oct. 26, 2009, lumpectomy and sentinel lymph node removal).

* don’t click if you’re squeamish

Four months after my Second Surgery

This much less gruesome* photo was taken exactly 4 months after my second surgery (Nov. 13, 2009, complete auxilliary lymph node removal).

* don’t click if you’re squeamish

Unbelievable. I am so grateful to the magic of the human body.

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.

Related Posts:

For whom the bell will toll

When we first learned that chemo was a certainty as part of Andrea’s breast cancer treatment program, it quickly became the beast I feared — more so than the three surgeries Andrea had and the radiation and hormone therapy that still lie ahead. The fear kept me up at night for weeks.

It seems almost impossible now to believe that Andrea has only one more round of chemotherapy to go. It feels in many ways as though we’re about to slay the beast with a final lunge.

Which brings us to the parade and the bell of hope.

We first learned about the parade during Andrea’s second chemo. We observed a small group of nurses fussing over a seated chemo patient opposite Andrea. When the patient stood up and started walking away, the nurses fell in behind and clapped as the patient made his final journey out of the chemo clinic. It was an emotionally uplifting moment.

To date, however, we have not heard the ringing of the bell of hope, an honour afforded to chemo patients who have completed all of their chemo treatments.

The bell hangs on the wall above an embroidered poem by a cancer survivor. It’s a poem of fear, love, strength and hope. It’s inspiring, as is the idea of ringing the bell. Which makes me wonder why we’ve heard a few parades and never the bell.

When Andrea gets up to leave the chemo clinic for the last time in the afternoon of April 1, I want everyone to hear that bell. To me, the bell isn’t just about Andrea soldiering through one of the most difficult physical and emotional beatings medicine can throw at a person, it’s about honouring everyone who’s been through this process and thanking the loved ones and support networks that stand by them. It’s about celebrating the courage and strength of the patient.

There’s still the potential of a rough recovery from this round, though we’re hopeful that a new side-effects management plan will make the recovery process for this round better than the last. Then, in three week’s time, that bell will sing its song for the chemotherapy unit and everyone in it. It will be sweet music and I’ll be there with every piece of technology I can carry to capture the moment, preserve it and share it.

And if I’m allowed to ring the bell as a supporter, every fibre of my being will go into ringing that bell for everyone who has been and will be through this process — the patients, loved ones, friends and the amazing volunteers, pharmacists and nurses.

I just hope the anticipation doesn’t keep me up at night.

In the News

Thankfully, breast cancer treatments are constantly evolving and, hopefully, improving. Devoted scientists and doctors are gathering and analyzing the treatment results of today’s patients for the benefit of tomorrow’s.

The web can be a very scary place and I usually resist the urge to search for breast cancer news. But sometimes I just can’t help taking a peek.

Here are some recent news articles related to my own treatments:

  • Gene Could Predict Tamoxifen Treatment Failure [Success] (Feb 1, 2010. Medical News Today)
    Researches at the School of Pharmacy Queen’s University Belfast have identified a gene, FKBPL., which when found in high levels in breast cancer indicates a good response to tamoxifen and a better chance of survival.
  • Women who took chemo-drug [Taxotere] weren’t warned of permanent hair loss (March 8, 2010. Globe and Mail)
    Women who took Taxotere to fight breast cancer say they were never warned of a side effect – permanent hair loss – that left them looking sick long after they were treated for the disease.
  • After Cancer, Removing a Healthy Breast (March 8, 2010. New York Times)
    The percentage of women asking to remove both breasts after a cancer diagnosis has more than doubled in recent years but a new study in The Journal of the National Cancer Institute found that, for most women, having a healthy breast removed after a cancer diagnosis had no effect on long-term survival.
  • Breast Cancer Ribbon Tatoos (March 12, 2010.  Health Lessons Centre).
    I don’t understand the title but this is a fairly exhaustive and concise summary of the latest in breast cancer treatment and research.
  • Breast Cancer Survivor Credits Vitamin D with Recovery (March 5, 2010. Health Zone)
    Not only does vitamin D help keep cells in sync, studies have shown that it also plays a defensive and offensive role in and against 17 varieties of cancer including prostate, colon and breast cancer.
  • Breast cancer virtually “eradicated” with higher levels of vitamin D (February 8, 2010.  Natural News)
    According to Dr. Cedric Garland of the University of California, Cancer Prevention & Control,  breast cancer is a disease so directly related to vitamin D deficiency that a woman’s risk of contracting the disease can be ‘virtually eradicated’ by elevating her vitamin D status to what vitamin D scientists consider to be natural blood levels.
  • Can Aspirin Reduce the Chance of Breast Cancer Recurrence? (February, 16 2010. American Cancer Society News)
    Women with breast cancer who take aspirin regularly after diagnosis and treatment may have a lower risk of dying from breast cancer or seeing their breast cancer come back in distant parts of the body, according to a new study published in The Journal of Clinical Oncology.

Chemo Prescriptions Underway: Check √

Today is chemo#5 — and Taxotere#2.

In an effort to beat the week-long agony of the last round, I’m already digging deep into my tickle trunk of prescriptions.

I’m heading into it much better prepared than last time. I treated myself to one of my chemo#4 sleeping pills and enjoyed a full 8 hours of sleep (the steroids prevent sleep).

Let’s hope the rest of these do their jobs just as well and my chemo recovery is awesome.

…Otherwise, Luba will have one long and gruesome March Break.

Type “C” Personality?

Thoughts from January Magazine’s interview with Dr. Gabor Maté, author of When The Body Says No: The Cost of Hidden Stress (Knopf Canada, 2004):

No personality causes disease. So there’s no cancer personality.

However, there are some common traits that, if they are present in exaggerated degrees, will make you more predisposed to the disease. They don’t cause it, but make you more likely to get it because they increase the amount of physiological stress you’ve got inside you.

So people who don’t know how to say no, people who are rigid and compulsive, perfectionistic, expecting themselves to be perfect in everything, people who don’t know how to express their experience of anger in a healthy way, people who compulsively and automatically take care of others and don’t think of their own needs, these people are physiologically stressed, whether they know it or not.

So it’s not that the person causes the disease. Stress is the thing that leads to disease or leads to conditions for it, but certain personalities are more prone to this stress. Because their boundaries will be invaded but they won’t know it, they’ll be extending themselves and they won’t know it, they will work when they should be resting.

So only in that broad sense can you speak of personalities, not in the sense that a particular personality causes a particular disease.

Of course, he also said:

Lots of studies show that people who are sunny and positive die quicker of their disease. If you’re a woman with breast cancer and you’re a positive thinker, you’re guaranteed to die much quicker.

Do check out this excellent (2-part) interview with Dr. Gabor Mate discussing psychoneuroimmunology here.

There’s also a thought-provoking (3-part) IdeaCity04 talk by Dr. Gabor Maté here.

Happiness Is…

Making plans.

When the diagnosis hit in October, random, everyday thoughts of the future were immediately and violently squelched by fear and the Big Unknown.

It seemed we’d forever lost the luxury of making plans.

While I’ve spent much of the last five months training myself to live in and enjoy the precious present, I’m thrilled to be back to a little looking-ahead.

I’m currently looking forward to:

  • my final chemo infusion (April first!)
  • the end of chemo-cocooning (April 21st?)
  • a May full of scheduled visits, travel and activities
  • Mark’s 40th birthday celebration
  • completion of radiation (June?)
  • a fabulous summer+.

And it feels great.

Oncology Update: Q & A

No surrogate at my pre-chemo#5 oncology appointment today. Here’s the scoop:

  • Can I avoid the full week of Taxotere-induced agony this round? If so, how?
    The answer was pretty much “Not really”. My oncologist entered the room shrugging and saying “I told you Taxotere would be bad”. She recommended I extend my steroids (dexamethasone) further beyond the 5x8mg doses and to take any combination of my many prescriptions that may help, as needed.
  • What’s her opinion of my long-debated bilateral mastectomy?
    My oncologist is not against the bilateral mastectomy and would support it if it puts my mind at ease. Apparently, though, there is no evidence that would prompt her to recommend it. She gave us the bad news that recurrence in the breast is not as likely as spread elsewhere in the body. Obviously, I can’t remove every organ in my body so I don’t think I’ll put myself through this major surgery “just in case”.
  • When does radiation start? And is it still within walking distance of our place?
    We will meet with our radio-oncologist in the near future to address these questions. It sounds like radiation is no longer available walking distance from our place, though. darn.
  • Can I ask now about plans for my ovaries?
    Yes, I was allowed to ask. The answer was, “We’ll see.”
  • What’s with the sunken, bright read hollows under each of my eyes?
    After hearing about the various possibilities of recurrence and spread of the cancer, I really didn’t care about the look of my face.
  • Is my 105 year old skin here to stay?
    See above.

Scary news or no, I still plan to survive and thrive.

Maybe not long enough to grow my own 105 year old skin, but for a long — healthy, happy — time.