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


The “C” Word by Stella

January 25, 2012

In October 2011 I reached the 5 year mark.  Cancer-free for five fabulous years!  They certainly weren’t five worry-free years, by a long shot!  Early last year my blood work started showing some changes.  My Alkaline phosphatase levels were fluctuating.  They would go higher than normal, at my next appointment would drop back to nearly normal again, only to raise fairly drastically the next go round.  Very much like a roller coaster – a very not-fun roller coaster where I worried about liver or bone metastasis.  Of course, I got my very permanent, very meaningful 5-year tattoo in October anyway because I’m very, very stubborn like that.

So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa.  She’s wonderful!  Incredible!  Awesome!  I fully and completely credit her (and God, of course) with saving my life.  I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006.  She didn’t even blink an eye when she said, “90%”.  Jeez!  You could sugar coat it a little, Lady! 

Anyway, back to the appointment.  I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas.  I’ve been losing sleep over it.  At least I think that’s what has been disrupting my night-time routine.  Maybe I’ve been worried.  Maybe a little bit.  Maybe.  So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured. 

Wha?  Huh?  Did I miss something? 

Yeah, you heard me right!  The other “C” word. 

Cured! 

CURED! 

Cured, as in, gone.  No more cancer.  Not ever. 

OK.  Am I the only one that thinks this might be a bit of calling up the devil?  Scary stuff…

So she explained herself.  First off, my rogue Alk Phos levels have returned to normal.  In fact, my labs are “perfect”.  <Insert pride and preening here>  Then there’s those odds… the 90%…  Turns out most of those turn out to recur in the first 18 months.  Particularly the Triple Negative Inflammatory Breast Cancer patients, like me.  However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo.  Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur.  Never. 

Joyous of all words, that “never”. 

So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name. 

Stella, cancer patient.

Stella, cancer survivor.

Stella, cured.

Cross-posted to I Can’t Complain Any More Than Usual


Too Moody For This

June 4, 2011

Last night my 12-year-old daughter got in trouble with her father and he just barely raised his voice at her.  Her response to this was to look at him and say, do not yell at me.  I wasn’t sure if my husband’s head was going to explode or not…it was touch and go there for a while.  My reaction, on the other hand, was to cry.  This has been happening more and more often lately.  I went to the grocery store and my husband told me I bought the wrong kind of cheese – I could feel my chin quivering and the tears forming in my eyes.

I’m turning 42 this month.  I know what menopause feels like, because I had the honor of going through it when I went through chemo.  Not only is it my birthday this month, but it’s also my 2 year cancer free anniversary – which means it’s been two years since I’ve had a hot flash or a major mood swing.  So, ok, I’m going through menopause, right?  Am I just starting menopause at the ripe old age of 42?  Is this a carry over from chemo?  Is it cancer?  Is it cancer? Is it cancer?  I get so tired of thinking that. 

 I see my oncologist every 4 months now.  It’s been 5 months since my last appointment.  Putting off going to the doctor doesn’t change what the outcome is going to be.  Intellectually I know this.  When they found the lump in my breast, they told me to trust them, because it was probably nothing.  Boy, were they wrong that time.  If I hear that again this time, I think my head will explode.


Some Things

April 12, 2011

A year ago when I was rediagnosed with breast cancer I was diagnosed with stage IV Metastatic breast cancer. which basically means my cancer had spread outside my chest area to other parts of my body. I kept this pretty private do to the girls and tried to make it as easy on them as possible only making some details known to them, to protect them in a way.

Lately my scans have been good I have had some set backs but I believed I was on the up swing. I had another round of scans last week and my scans reviled a shadow that my doctor wanted to check out a little closer. So I had a brain scan on Friday morning, by two o’clock my doctor called me with the results. The cancer has spread to my brain in one spot on the right side in the back of my head. I also had questionable spots throughout my brain.

So this has been really hard to soak in. It’s not an easy thing to process. Yes I have cancer, in my brain what will happen to me? So I start radiation to my head tomorrow, and they will treat me for two weeks everyday. Then we will work on the spot of cancer if it needs to be treated. they will stop my chemo until then, they don’t like to mix the two together.

So that is what we are facing right now, it’s hard and scary and I hate sharing it all with you, but you are all a big part of me and my recovery and my blog has pulled me through some really tough times. So I thought I could share this with all of you.

Thank you so much for all of your prayers and support

Sarah

Cross posted on Spruce Hill


A new Year a New Hair Do

January 4, 2011

After getting my hair cut really short on The Wednesday before Christmas my hair continued to fall out after my chemo on Thursday. The day after Christmas I decided it was time and I shave it all off. It came out so easily I barely had to even touch it with my razor. So I’m bald again. I never thought I would be here again. I even gave away all my scarves a year or so ago, thinking I would never need them again. I gave them too a friend in my support group. Everyone came through and I have lots of new scarves and hats and got my old ones back. I am all stocked up. It’s a bit colder being bald in the winter, wooo! So no more flying under the radar, now I look like I have cancer. I was really enjoying my hair and not looking like I was doing chemotherapy. It was nice I felt like I was incognito. Mow not so much, we went shopping at the mall the day after I shaved my head and I got stares and smiles, people being nice to me just because I have a scarf on my head. That is something I never get used to. I tied my wig on the other day and I still hate it. It’s itchy and ugly and I just don’t like  it. If I do get a new wig I am going long and bright! It’s hard to get used to being bald again, I see myself in the mirror and I don’t recognize myself. Today was my first day back to my regular routine, picking the kids up at school. I waited until the last-minute to get out of the car, not wanting to talk about it and avoiding all the Mommies. I felt guilty about it afterwords. They all think I am so strong but I don’t feel that way inside. I feel like a sacred little girl not wanting to be noticed and be different from everyone else. I guess that doesn’t change as we get older. We just don’t realize it until something happens.

Cancer is not just something that happens to your body but it really effects your mind as well. I lay in bed and wonder about all kinds of things. About my girls and how they are taking my second battle with cancer. I worry about my husband and all the extra things he has to worry about. I worry about my parents and them worrying about their child with cancer. I worry about my siblings, and how they handle it. I worry about everything at 3:00 in the morning. Every night before bed I pray that I sleep. That I will not wake up in the middle of the night and not be able to turn off my brain. It’s hard having cancer, going through treatment. I never imagined in a million years that I would be doing this all again for a second time. The stakes are higher this time and it scares the crap out of me.


Eribulin, so far

December 12, 2010

By Sarah

So far I have had two treatments with the newly approved breast cancer drug Eribulin. I had a hard time at my first treatment  just getting my insurance company to ok my treatment. You can read about my experience here. It’s kind of scary receiving a new drug but exciting at the same time. Not knowing really what to expect. I am my doctor’s first patient to receive the treatment and the first patient at the hospital to receive it. I felt like I was on the cusp of something important. Paving the way for other women like me who have tried several drugs for their cancer that had not worked.

I have not experienced many any side effects from my treatments so far. My most significant side effect is fatigue. I seem to be sleepy all the time but it may have to do with the meds I am taking for my cough too. The only other side effect I have experienced is a little constipation which as all  cancer patients know is very common. I don’t have any food aversions and have been able to drink my coffee every morning which makes me very happy.

I am currently using an oxygen machine to make my breathing easier. My cough that I have had is getting better and I think the oxygen is really helping that out. If I feel short of breath or have a lot of coughing I just go into my room turn my machine on and put my nose piece in and bam, I get a nice oxygen treatment.

My hair is still hanging on and I am told that it will not all fall out. We will see about that. My hope is that this new treatment will kill my cancer and put me into remission. I would like to celebrate a lot more Christmases.


Triple-negative roundup

November 19, 2010

A friend of a friend was just diagnosed with triple-negative breast cancer.  She’s asked for information, and I know several of you are also survivors of triple-negative breast cancer.  What are your favorite resources?  What do you recommend?

I’ll throw out what I was sent on twitter today, by @ejwillingham:

Living Beyond Breast Cancer‘s monograph on understanding triple-negative breast cancer;
the Triple Negative Breast Cancer Foundation and its forums; and
the Breast Cancer Network of Strength (formerly y-me), which will match callers with other survivors for peer-to-peer support on a wide variety of topics.

What else do you recommend?