finding hope beyond the pink ribbons (by Laurie)

July 20, 2012

My friend Sean Moore, Orit’s husband, posted the following note on FB. I reprint it here with his permission:

An enormous number of people have asked about donations in Orit’s name over the past 2 weeks. As many of you know, Orit was very academically minded and spent considerable time reading the medical literature and evaluating charities. We found that most cancer research charities had very high administration fees and poor impact factors. We came across some specific research, which has very good promise in helping find a cure. The Ottawa Hospital Foundation has set up a fund, which will be used 100% to go directly to this work. The discovery is very novel and was published in the world’s most prestigious scientific journal in June of this year. I will include a link to their latest publication and an easy to understand explanation:

http://www.fbmc.fcen.uba.ar/materias/qbiia/seminarios-2012/seminario-6-28-y-30-de-mayo.-hipoxia-y-autofagia/A-Nature%2012%20AOP%20may6.pdf

Here is a link to an easy to understand summary of the research:

http://www.ottawacitizen.com/health/discovery+offers+hope+cancer+heart+disease+miracle+drugs+with+video/6574966/story.html

Donations in Orit’s name can be made online by using the following link:

https://secure.e2rm.com/registrant/donate.aspx?TributeType=Memoriam&EventID=1819&LangPref=en-CA&Referrer=http%3A%2F%2Fohfoundation.ca%2F

The first page will capture the information regarding the person making the donation. Under “Donation Information”, please choose “Other” in the drop down menu and specify “As requested by family” in the space provided. Once the donation portion is completed, you’ll be directed to a page to indicate that the donation is being made in memory of Orit and to indicate if an acknowledgement should be sent. Tax receipts are immediately available after donation is done.

Donations can be sent by mail (indicate in memory of Orit Fruchtman) to
The Ottawa Hospital Foundation, 737 Parkdale Ave, 1st Floor, Ottawa, ON K1Y1J8.

Donations can also be taken by phone by calling (613) 761-4295.

1 in 8 women will get breast cancer. Research is the only path to finding better treatments and a cure to this disease, which has devastated our family and so many others across the world.

Love, Sean

“The true meaning of life is to plant trees, under whose shade you do not expect to sit.”  Nelson Henderson

This message had a very strong impact on me. Orit was a very smart woman. Sean is a doctor. I trust their judgement. And I agree with their priorities. 

Let’s do something great to honour a wonderful woman. Let’s help fund research that will effect real change. I donated. Will you?

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for Orit (by Laurie)

July 14, 2012

photo: Andrea Ross/Mark Blevis

As of Saturday, June 30th, I have been in remission for five years. This is a huge milestone and I’m very fortunate to have the chance to mark it.


But I really didn’t feel like celebrating.


Just a couple of days before, my beautiful friend Orit passed away, leaving three young kids, a loving spouse and a large group of family and friends in deep mourning. I spoke to her husband Sean early on the day she died and afterwards posted on Facebook what was for me an unusually vague status update:

“Warning: This would not be a good day to tell me that everything happens for a reason. Sometimes wrong stuff just happens. And sometimes life is terribly unfair.”



So much about cancer is a crap shoot. Some get cancer, some don’t. Some walk away, others live with the illness forever. Some live for a long time and some die way before they are ready to go.


Orit had strength and determination and a great love for her family and community. She had access to the best health care and, prior to being diagnosed with Stage 4 breast cancer, was healthy and fit. She never stopped fighting to live and she most definitely did not lose a battle.


Despite the fact that we lived in the same neighbourhood, I met Orit less than a year ago, not long after her cancer diagnosis. Our illness brought us together but we soon found that we had so much more than than cancer in common. We both found humour in the world around us, sought to nurture our creative selves and wore our hearts on our sleeves when it came to those around us. I had the privilege of watching her face light up when her husband got home and the clear eyed love she had for each of her kids. We had the chance to talk about being in cross-cultural relationships and about the values we hoped to share with our kids. We talked about petty grievances and big ideas. And we shared our fears, hopes, sorrow and anger at facing the scourge that is cancer.


One evening, as we were yarn bombing our local community centre, Orit and I sat on the pavement sewing a 6 foot tube of yarn onto a bike rack. As we took turns holding the piece in place and passing the needle, she suddenly said. “I really wish that we had the chance to know each other before. We would have been such good friends.”


I felt my heart break as I struggled to find an appropriate and truthful answer. But I knew it would be wrong to say “We will get to be friends for a long time” or even “It’s going to be OK.” Instead, I said swallowing the lump in my throat, “I agree. I wish I’d met you sooner as well.”


The last time I saw Orit, we had tea on her front porch while she knit. She had been in the hospital the night before because of unmanageable pain. That morning she seemed fine, if weak. She talked about convincing her oncologist to try one last course of treatment and her profound grief at the thought of leaving her children. We both cried.


And then I left for a yoga class, borrowing a t-shirt before I left. It didn’t occur to me that I would not see her again.


A few days later, she was hospitalized. And a few days after that, she died.


I wish I had told her how amazing I thought she was. That I thought she was a great mother, an interesting person and inspiring in a way that transcended her illness. I wish I’d said how beautiful she was.


I’ve struggled for two weeks to write this blog post. Orit’s family have been so kind, loving and generous to me but I can’t help thinking how grossly unfairly life has treated them.


Which is why I haven’t felt like celebrating.


I am very lucky to be alive and I hope to be around writing blog posts in another 5 years. None of us knows when our time will come. We need to live bravely, love fiercely and hold on to the things that matter. We need to tell those we care for how much they mean to us and to do those things we always wanted to do. No matter how long we have on this earth, we need to truly live.


I, for one, plan on doing a little more yarn bombing. I have Orit’s last piece of knitting so a little bit of her will be there as well.


Care to join us?

video: Mark Blevis


it is what it is (and what it is is ok) – by Laurie

November 16, 2011
Herceptin makes me feel lousy. Or maybe it’s the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.
It’s a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I’m still really dragging my butt around, when I bother to get up at all. I’ll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.
I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don’t need to have heart scans every three months, as I have been. I don’t even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it’s currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot – a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don’t know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It’s a bit unnerving but, given the alternative, I’m happy to serve as a human guinea pig.

Cross-posted from Not Just About Cancer.


please be aware (by Laurie)

October 13, 2011

Today is Metastatic Breast Cancer Awareness Day.
Six years ago, I thought I had a pretty good vocabulary but I didn’t know the meaning of “metastatic” until I was diagnosed with breast cancer.
According to the American Cancer Society, only 15 per cent of women with mets will still be alive 5 years after their diagnosis. I’m one of the lucky ones ( stats are bogus anyway).
I think one of the reasons I get so angry at campaigns aimed at “saving [insert infantile name for ‘breasts’ here]” is that, for those of us with metastatic breast cancer, the breast was only the beginning. Our cancer has spread to our bones, brains, liver, lungs or skin. We are “the bad girls of breast cancer.”
And we want you to know about us.
We are:
Catriona
Rachel
Katie
Jeanne
Deanna
Judy
Susan
Katherine
Eileen
Delaney
Kristina
Dirty Pink Underbelly
Susannah
And we remember:
Sarah
Emily
Rebecca
RivkA
Sue
Andrea
Kate
Chris
Daria
Lisa
Jill

Renee


no pink for profit runs/walks for the cure v2.0 (by Laurie)

October 5, 2011

 

The miraculous photo in which we all have our eyes open! photo: I. Hendel

There was some incredible coverage in the Ottawa Citizen this year. All the articles listed below were also in the Saturday print version of the paper (for my American friends: the Saturday papers have the highest circulation, as yours do on Sunday):

Seeing red over pink ribbon campaign.

Pink fatigue. 

Think before you pink.


The Citizen also posted a short video to their web site:

(update: I couldn’t figure out how to embed the video on WordPress but you can watch it on my blog, Not Just About Cancer.)

Thanks so much to all the team members (including those who who were not able to attend the walk/run) and to everyone who donated. Special thanks to Andrea (who is the real woman wearing the pinnie in the Citizen photos) for holding my hand through the surreal filming of the video and to our honorary team members, Tim (picked up the team kits and t-shirts) Ian (took photos and custody of our stuff while we walked and Lee (stepped up with kid distraction when it was very much needed).


May we all be healthy and able to do it next year. And may there soon come a time when the Run for the Cure is a thing of the past.

 

“I’m running for…Deanna, Susan, Judy (and me). 
In memory of Sarah and Rebecca.” 
photo: A. Ross

just slightly below par (by laurie)

September 15, 2011

On the morning of September 7, I had an appointment with my oncologist. I had confirmed that we would do it over the phone and kept my phone handy to await is his call.

 At 11:00, the nurse who works with Dr. G. called to say that I would be hearing him before the end of the afternoon, thus giving me several hours to work myself into a state of high anxiety. I’d had an echocardiogram and two CT scans on August 29 and I knew that my doc would have the results.

I had no reason (other than history) to believe that the CTs would reveal anything bad and I’d managed to pretty much forget about the results until the day I was to receive them. On that day, I became a nervous wreck. I jumped every time the phone rang and when the call I’d been waiting for finally came through at around 5pm, I was a mess.

My oncologist apologized for the delay, and, as always when I hear his voice, my annoyance and anxiety dissolved. He told me that both CTs were fine. I have lots of scarring on my liver (from the cancer) and a little scaring on my lungs (from the radiation) but that there was no sign of cancer anywhere.

Excellent news.

Then I asked about the echo, which surprised Dr. G. He didn’t have the results in front of him and had to go look them up. When he did, he sounded a bit taken aback.

My ejection fraction is at 48%. The normal range starts at 55%, so I’m really just below that but it’s enough of a concern to send me to a cardiologist and to cancel next week’s treatment.

My concern is not that there is permanent heart damage (although it’s a bit freaky to think that my poor heart is a bit over-stressed) because Herceptin damage is usually reversible. My fear is the length of time it will take my heart to bounce back and what my treatment options are in the interim. And what if the toxicity has built up to a sufficient level that long term treatment with Herceptin is no longer viable?

This drug has been my magic potion, the one I credit with my remission and the fact that I’m here today. I’m not ready to think about giving it up.

And I don’t have to. Not yet. Going to try and save all my questions for the cardiologist and, in the interim, carry on with my happy, busy life.

Update:  I have an appointment with a cardio-oncologist on October 3rd.

Cross posted from Not Just About Cancer.


smiling can’t cheat death (by laurie)

September 1, 2011


I’m a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.

And I don’t, for even a second, think that people who worried too much, or got mad or who didn’t have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.

In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments’ side effects. But luck plays a big role in survival as well.

I’ve been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.

Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase “lost his battle with cancer.” Jack didn’t lose a battle – there was no failure on his part – he got cancer and died. No amount of positive thinking could have changed that.


 

(Shout out to my friend Sharon, who first used the phrase “tyranny of positive thinking” in my presence. She has kindred spirits out there, too).

Cross-posted to Not Just About Cancer.