for Orit (by Laurie)

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

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.

just slightly below par (by laurie)

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.

Hmm…. a rambling update of sorts (by Lyn)

I just want to first comment on the recent posts from these lovely ladies.  I can relate on so many levels to it all though I am in a different phase currently.  There was a time when I was first diagnosed with IBC that I wanted to talk about death, all I could think about was life in a spiritual fashion because I didn’t know if I would beat it.  My mother had just passed away a year before from cancer and I watched the last breath leave her body, so the heavy thoughts of the seriousness of IBC weighed heavily on my heart.  Then I remembered HOPE, and my fighting spirit kicked in and I focused on beating it.  Not necessarily on living a well rounded life at the time, I was too scared for that I think, but I did have hope and I did feel like a warrior.  A lone warrior LOL.  My life quickly changed from average life working full-time with a 2 year old and 3 year old happily married to unemployed, very sick, and noone around me understood.  The people that were supposed to ‘get it’ turned into confused weak aliens and my new support system was a world of women online that I had no idea even existed and most of whom I still haven’t met in person.

I actually had to shut out family members who weren’t positive.  I simply said, if you can’t support me as much as some stranger I’ve never met, don’t talk to me at all.  Fear is a powerful thing, and when I’m scared I am sort of like a feral cat backed into a corner and if you’re not a friend you were an enemy.  Right?  No.  Necessary?  Possibly.  There’s a lot that I look back on and regret from the first year of my cancer diagnosis, but I have to be very gentle with myself because my support system wasn’t good.  We had no guideline or role model to show us what to do, how to help each other.  The growth I’ve experienced is that it isn’t their fault.  It wasn’t their fault.  The desire to support me was there, but it wasn’t coming in the way that I wanted or needed so I couldn’t see it.  Now that time has passed I have since found understanding and reconnected with said family members who were more than happy to come help me at my recent surgery.  I vowed this time, to recognize the intent behind people’s actions and go off of that.  I’ve learned to have understanding for others looking in at me from the outside.  I probably scare the shit out of them.  A 30 year old with 2 small kids going through everything we warriors do, and doing it independently and fiercely.  Yes, I’m sure looking back they saw me as pushing them away and their own fear stopped them from meeting me where I was, and my own desire for survival on my terms stopped me from including them in my battle.

Needless to say I have learned a lot about myself and about others since my diagnosis.  Life, the meaning of life, the ‘right’ way of life is something I think about all the time.  I have yet to find a place where I am comfortable just being.  It seems like I keep pushing through pain to find the space where there is no more pain and it won’t come.  Sometimes I ask myself why me, why now, why not.  Lately I’ve been looking to the future a lot, praying a lot, begging the universe for some release.  Then I remember that I have the power to focus on hope, healing, and happiness.

I’m not talking about my cancer with the last paragraph.  I haven’t said as much on my blog, but I found out that my husband- who I truly love with all my heart well before cancer- was cheating on me when I was battling for my life.  I found out this year, and it’s been like getting a cancer diagnosis all over again.  Actually I would prefer chemo some days.  So while at first I shut him out, I’ve been allowing him to talk to me and to listen and then I talk.  It just feels like pain.  Healing, sure.  Cleansing, sure.  But pain, more unnecessary pain that I don’t think I deserve and that makes me angry, which makes me frustrated, which makes me sad because I can’t control it.  More and more I learn about myself and at the same time about others’ limitations.  He has stepped up to the plate at taking my punishiment and wrath and making it right but will it ever be enough?  I don’t know.  I can’t say, I can’t control how I feel.  I would give anything to be nonchalant and flippant and not care.  I would trade anything for that.  But I’m stuck here in the pit of I give a shit and also, responsible for what happens next.  Do I want to risk getting IBC again and not have him in my life- this man who I love and is remorseful- or is it – do I want to risk getting IBC again and be still married to a man who betrayed me when I needed him the most.  Or is it, do I take yet another leap of faith and trust (but verify!) that this person has grown himself, found his own love, and will never hurt me again and jump in with the hope that IBC will not come knocking on my door again but if it does my marriage will not be an issue of it.

I don’t know.  It’s too much, it’s overwhelming.  The gift and the curse of cancer is that we know how precious life is.  How much time can I waste on anger or hurt- even when it hurts so much all the time?  That becomes the question.  I imagine that if I was a normal 32 year old without cancer or parents gone, and everything was fine I would walk away with my head high and my hair flapping in the wind giving him the middle finger for not seeing how awesome I am, not caring what he might have been going through or what led to it.  But now… now I know unfortunately that life is bigger than me.  It’s not all about me, even when it should be.  Ah well… that’s my rant.

Physical update, I had a double latissimus breast reconstruction 4 weeks ago.  Last weekend I ended up with a bacterial infection and almost got admitted again.  Every day this week I have had to go into the plastic surgeon’s to have my back drain tube wound opened and drained and packed because it was fluid that collected there that caused it.

My left cancer side ‘frankenboob’ is not doing well.  It’s failing and the surgeon says we have to do another surgery in a few weeks when I’m better this time taking fat and skin from my stomach.  Hopefully it goes better this round.

I am NED still according to the pathology reports from the samples the surgeon sent when he did the reconstruction.  So I have that to be thankful for, and I am.  It is possibly one of the main things that keeps all the pain balanced, the physical pain and the emotional pain… that no matter what I’m still for now NED and still have a chance to see my kids grow up.  Anyone else sometimes feel like, is this really my life?  I know I do, but thanks to cancer, I’m thankful for most of it and the parts I don’t like I have hope I’ll figure that out in time.

now this could be fun (by laurie)

 

I’ve written before about the one major limitation of Herceptin – that it doesn’t cross the brain-blood barrier. A couple of years ago (after meeting several young women with metastasis that had spread to the brain), I underwent a brain MRI. To my very great relief, there was no evidence of trouble but I think I’ll will be requesting another before too long.

A few days ago, my friend Deanna posted a link to Breast Cancer? But Doctor…I Hate Pink and to Ann’s take on the news that Viagra may help Herceptin to (ahem) penetrate the blood-brain barrier and thus help reduce the size of brain tumours.

As Anne tells it:

“Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can’t get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties.”

It’s seriously interesting news but go read Ann’s full post. It will make you laugh.

Cross-posted from Not Just About Cancer.