Feeling the fear

this post is cross-posted from Get Out Gertrude by Jenny (jaydub26)

This post is dedicated to my friend Sarah who blogged with me on Mothers with Cancer, who died today.

We got to know each other through each other’s blogs and like me she was a bit of a twitter addict and we were also facebook friends.  Even though we never met (she lived in America – I live in New Zealand ) , through all these avenues she became part of my every day life – a real friend, and I will miss her.

 I had planned and written  this post in my head  already but with Sarah’s death, it makes it all the more real.

One of the reasons I don’t write more about advocating for change, education, research, a cure is because it requires me to quote facts and figures – statistics that in my every day life I try really hard not to think about. 

Sarah had metastatic breast cancer

The American bloggers I follow that went to the NBCC  advocacy conference  were given a presentation that gave some facts around that –

From The Cancer Culture Chronicles : In America 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease and metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year

from Uneasy Pink came a link to a video presentation they were given  (click on the link – I dont have the capability to embed video in my blog) that states in 1991 (in America) the deaths from breast cancer were on average 117 a day , today it still averages 110  ( I would imagine that adjusted and worked out on a per capita basis New Zealand deaths from Breast Cancer would be about the same).

 That is 110 ‘Sarah’s (somebody’s wife, mother, sister or friend ) dying every day from metastatic breast cancer.

My friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these statistics and how we needed to change the conversation from awareness to really finding a cure.

Especially around IBC those facts and figures are even worse.  In a recent article Dr Christofanilli, one of the leading experts on Inflammatory Breast Cancer said “most women in whom IBC is diagnosed eventually experience a recurrence and die from the disease—highlighting the need for further research.”(approximately 75%),  and “is the survival of women with IBC in the 21st century similar to that of women with LABC? In a retrospective review of women in the Surveillance, Epidemiology and End Results (SEER) registry, our group has recently shown that women with IBC who were treated between 2004 and 2007 in settings where a multidisciplinary disciplinary approach to treatment is considered standard of care, continue to have poorer survival outcomes when compared with women with non-IBC LABC”

Well the statistics pretty much suck, don’t they, for those of us with  IBC!!  We are living longer with newer targetted therapies  (5 year survival now 40%) but once we are metastatic that is based on  a control rather than cure model. At the moment we will, almost 90% of us of we that get metastases, eventually die of metastatic disease.

I live with the fear everyday that ‘the cure’ will not be found soon enough for me.  But I try not to let myself feel it – if I let myself feel that fear, I would not be able to function in my everyday life.  Be the wife, mother, student, friend that I want to be.

But sometimes I have to let myself feel it and face my own mortality. One of my friends sent me a song via email last week that made me feel sentimental and weepy for the first time since I found out about my liver. The song and the sentiment weren’t anything to do with my cancer but allowing myself to cry over it opened the flood gates and allowed me to be open to feeling the fear and other feelings I had been trying hard to suppress.  That song and two others were on my playlist a lot last Thursday and Friday and as I said to my cancer society counselor yesterday  I actually really liked the way it happened and I thought it was a good cathartic release and much more controlled than if I had let it build up longer.  It wasn’t like I let myself bawl my eyes out uncontrollably. I just let myself think about things and feel things and let the tears fall if they came.  I felt I was in a really good head space afterwards for letting it out. 

I have two songs I listen to when I want to allow myself to connect to those emotions. One is ‘The show must go on’ by Queen and the other while I am not a huge fan of country music is ‘ Live like you were dying’ By Tim McGraw  – both of them are about facing your own mortality and dealing with it, living the best life you can or living your life your way until the end.  Which is what I will try to do.

Don’t get me wrong, I don’t sit around thinking I am going to die anytime soon, but I just acknowledge what is the most likely scenario for my death.  That I will in most probability not live to be an old lady. 

Today I cried again, for Sarah, who lived her life – loving it, finding the joy in the photos she took, her dog Finny (of who she tweeted many pics), her three children and her husband.  Loved your spirit Sarah and hope I can handle things with as much grace and hope and love as you did.

Edited to include what Laurie pointed out in her comment below: it should be clarified that Sarah didn’t have IBC. Her cancer was, however, triple negative, which suffers from the same lack of awareness and lack of research funding as IBC and is (like IBC) also more likely to become metastatic than other forms of breast cancer.

Some Things

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

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

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.

Back to the infusion center

Please send Sarah @sprucehillfarm a little love today as she prepares to start chemo.  Again.