Archive | February, 2013

Rachel . . .

6 Feb

Recently, my friend Kathi of The Accidental Amazon, commented on my blog. Since Kathi so often writes about the very things I am feeling, I thought I would share what she had to say (it is posted as a comment, but I wanted to re-iterate it here).

 “. . . I hope this year will be kinder to us all. I hope for less pinkwashing and less sexualizing and less trivializing of breast cancer. I hope for more answers and better options and less collateral damage. I know that none of us will forget Rachel . . .” (by Kathi, author of The Accidental Amazon)

Wow. So well put.

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Like I said, so often Kathi writes something that so exactly conveys how I feel . . . her blog is here at: Accidental Amazon

I hope that this year is kinder to all of us too.

Too many have gone and too many are suffering in ways that many outside of “cancerland” are unable to comprehend. I watched my aunt suffer in ways that are unimaginable and yet it happened. And the sad truth is that almost 20 years later (she died in 1994) nothing has really changed all that much. But I hope and pray that things will change. I pray for that for all of us. And I pray for that for Rachel’s memory – that her words will continue to make a difference and to continue to shed light on what needs to change and continue to encourage others to speak out.

I hope for less pink washing and less sexualizing and trivializing of breast cancer too.

The true face of this disease is so different from what is portrayed. That is one of the things that I find most disgusting about Susan G. Komen – that they parade women around who are survivors and paint them out to be completely over cancer – as if it was some little blip in their life – and they (SGK) then take credit for the paraded success stories – all a result of “early detection” . . . that is what they tout as a cure . . . GRRRRRRRRR. This is what I have seen year after year at their “races for the cure” (yes, I go to these things – I feel like I can’t fight the enemy unless I know them – rest assured, they get none of my money). They never bring out the women who can’t walk out on the stage or who are dying. After all, that just doesn’t make people feel all warm and fuzzy inside.

Not so Pretty in Pink

Instead they wrap it all up in pink bows and pink balloons and take credit for the survival of these seemingly unaffected survivors (it is horrifying to see really – the lies – when we all know that you don’t just walk away from it, there is
fallout, post traumatic distress, financial chaos, brain fog, physical pain, physical limitations and fatigue . . . to name just a few of the things that cancer leaves in its wake).

But there is no mention of any of this at the “races for the cure”. Instead it is pink ribbons, balloons, pink porta-potties (as Rachel so eloquently and mathematically pointed out, most of the money raked in by Komen in the name of a cure, went to everything but research). I mean really, pink porta-potties? Talk about money down the toilet. And PINK-WASHING – yup, they actually do it right there on site at the “race for the cure” – products given away and sold that are in containers that are linked to an increase risk in cancer (products that are in plastic with chemicals that leach into whatever you are drinking out of it – they call these chemicals hormone disrupters and there are many studies that link these “hormone disrupters” to not only an increase in breast cancer, but also prostate cancer.

That is how it is here in Orange County, California, where I live. Early detection is sold as a cure for breast cancer and survivors are paraded around a stage (one after the next speaks about their cancer blip as if it was nothing and then SGK gets more money in the door by associating themselves with survival and pretty pink stories.

That, to me, also trivializes breast cancer, trivializes what Rachel went through, what her family went through and continues to go through. And it trivializes the real plight of survivors and truly down plays the need for treatment post treatment. I need physical therapy but can not afford it. I have insurance, but the co-pays are impossible to manage.

I recently went back to work in a very full time (okay, more than full time) way. And it is very hard. My body is not keeping up with it. But, I am grateful to have the opportunity to be here and to claw my way through it. But, it is painful and hard and most people in my life think that I am fine (LOL).

It isn’t enough

The pink bows and ribbons and wasted dollar – trivialize all of it. We are all just supposed be grateful that we survived and not expect anything better . . . it is not good enough, not at all. And we are supposed to sit back and watch younger and younger women get diagnosed.

I stopped writing after Rachel died. It was just too painful and I felt too lost. It wasn’t a conscious decision to stop, I just stopped. I still have not watched all of her memorial footage (I barely got through any of it). Is that wrong? I just haven’t been able to do it. You see, I had planned a trip – it was this idea I had of traveling across country to meet all of these amazing women in this wonderful blogosphere – and at the end of that trip I intended to reach Rachel. That will never happen. She is gone. I had a map in my head – I saw pins placed where everyone resided – from the West Coast where I live, to the East Coast. Rachel was at the farthest point on my map of the United States. (Which at the time seemed fitting somehow, to end the trip in with a visit with Rachel). But, it never happened and it will not ever happen.

I know that none of us will ever forget Rachel. She left a void, a palpable empty hole. But, she also left us everything she wrote – such powerful words. Words that continue to churn around the world and draw attention to what is wrong, to what needs to change. Words that encourage others to write and to continue to pave the way for change.

Today much, I imagine, will be written about Rachel. I know that we will all be thinking of her and of her family. Like I said, for the most part, I stopped writing because of Rachel’s passing. I know that isn’t/wasn’t the right response and it certainly isn’t the right thing to do . . . especially when I recall that one of the last things Rachel said to me was to keep writing about SGK. I have felt guilty about not writing and I have felt paralyzed, when it came to writing, by her death. It is too hard to even explain.

I miss Rachel. I know I am just among many others who miss her, especially today.

Love and peace and prayers to Rachel’s family.

Here are two beautiful posts about Rachel:

Nancy’s Point: Remembering Rachel

Accidental Amazon: Elegy to Rachel

And here is one of her many important posts: Komen By The Numbers: 2010 And Still No Answers

Lisa

The first day of the rest of my life . . .

1 Feb
Dinner in Santa Monica . . .

Dinner in Santa Monica . . .

I have graduated back to seeing my oncologist every six months again. Progress. During my last visit it was changed back to “Let’s see you back here in a couple of months and then we’ll see…”

It felt like a set back at the time. And what is so crazy about all of this cancerland-post-cancerland-landscape is that the first time I graduated from seeing my oncologist from every three months to every six months…I nearly lost it…the idea of not having a net…as if seeing her would somehow prevent the cancer from coming back…this from a person who prior to cancer hardly took an aspirin and saw a doctor once a year because…well you’re supposed to do that…but for no other reason.

Maybe it was because I had become so used to the, at first weekly appointments, with not just one oncologist…but sometimes two (my insurance provided oncologist was an idiot and nearly killed me…but I had to see him to get chemo and Herceptin locally).

My first “every six months” appointment was kind of scary to accept. In fact, I didn’t actually accept it…I asked if we couldn’t just go from every three months, to every four…and my oncologist (also affectionately known as “the rockstar”) smiled and said, “Tell you what…we’ll split the difference and make it five months” 🙂 And so it went.

But now I am grateful for the “every six months” status . . . and celebrating this little milestone…this little piece of progress that creates a little more peace in my life.

And there are other reasons for peace re-entering my life…

For now, I am just going to share that I am celebrating…everything…and purging…at least, as much as possible, the concept of fear.

At, least, for another six months…

Much love and peace and many thanks for your prayers,

Lisa

P.S. I do have a breast MRI on the calendar (well, to be put on my calendar) but, it is routine and only being ordered because it is time to have it done. So, for now, all is good and I am celebrating.

And yes…I am having tiramisu…

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