Cancer Culture Chronicles

This morning I found out that a blogger I just emailed two weeks ago, Rachel at The Cancer Culture Chronicles, passed away this morning.  I cried when I found out.  This is the email exchange that we had back on January 24th.

Hi,

I came across your blog through several of the Facebook pages I've liked.  I've now since liked yours.  I'm 31 years old, and I was diagnosed with early stage breast cancer almost a year and a half ago.  I'm the daughter of a woman who was diagnosed at end-stage and passed away when I was only 7 years old.  Breast cancer has been a big constant in my life since I was a kiddo.  I'm now at the point of my recovery where I want to stay on top of what's going on and keep up to date.  I know the odds of this beast coming back bigger and stronger is high.  I want to thank you for having such an informative, realistic blog about this disease.  Before being diagnosed, I was very supportive of Komen in memory of my mom.  Now that I've been diagnosed with breast cancer, I really don't like them.  Is that common?  Haha.  Anyway, I can ramble forever.  I'm going to keep browsing through your site.  It's helping me a lot.

Take care,

Lara

Http://getupswinging.blogspot.com

CancerCultureChronicles	Jan 24
to me

Welcome Lara and thanks so much for reading. I'm so sorry to hear about the loss of your Mom and of your own experience.  I was originally diagnosed at 33 years old.   Please join the discussion any time.  Now time for me to check out your blog.

Best wishes,

Rachel

Her blog is amazing.  She was a voice for women living with metastatic breast cancer.  More often than not, the breast cancer conversation centers on the patients who we can "cure."  These conversations tend to forget about the women who are living with stage four for reasons unbeknownst to me. 

According to the American Cancer Society's website, stage four breast cancer is when:

Stage IV cancers have spread beyond the breast and lymph nodes to other parts of the body. Breast cancer most commonly spreads to the bones, liver, and lung. As the cancer progresses, it may spread to the brain, but it can affect any organ, even the eye. 

Although surgery and/or radiation may be useful in some situations (see below), systemic therapy is the main treatment. Depending on many factors, this may consist of hormone therapy, chemotherapy, targeted therapies like trastuzumab or lapatinib (Tykerb), or some combination of these treatments. Treatment can help shrink tumors, improve symptoms, and help patients live longer, but it isn’t able to cure these cancers (make the cancer go away and stay away).

Rachel was a harsh critic of the Komen foundation and rightfully so.  She wrote a plethora of articles, dissecting Komen's operations and numbers.  Her last blog entry was regarding Komen dropping "For the Cure" from their advertisements.   A sample from her blog:

"We helped 100,000 people financially through treatment"  

In 2010, Komen spent about $20 million or 5% of their budget on treatment.  For 100,000 people helped, this equates to about $200 per person.  Whilst any money is good money to those in need, realistically $200 would pay for about fifteen minutes of consultation time with an oncologist.  I've been in treatment since 2004.  My first year alone, I paid close to $10,000 in charges that my insurance didn't cover.  What if I didn't have insurance?  $200 would be nice, but it certainly wouldn't even scratch the surface in terms of financial help for treatment.

Word word word.  If the Komen wants to help women against breast cancer, then alleviating some of the financial stress associated with treatment would go a long way.  Cancer is a financial devastation when you don't have insurance.  When you have insurance, cancer is still a financial burden.  My sweetie and I lost approximately $20,000 in income when I was on leave and then he was on leave for six weeks.  That was a huge blow to our wallet and ability to live the life we used to live.

Back to Rachel, see... She dropped knowledge bombs on y'all.  For awhile, I was unable to look at breast cancer blogs that didn't perpetuate the positive ideal.  I did not want to face the facts that this disease could come back for me bigger and badder.  It may not come back, but shit, the odds are not pretty.

In developed countries, nearly 30 % of women with early stage breast cancer will eventually develop metastatic breast cancer.
(O’Shaughnessy J. Extending Survival With Chemotherapy in Metastatic Breast Cancer The Oncologist.2005;10 (suppl 3): 20-9)

I am so sorry she is gone.  The breast cancer community lost an amazing advocate and dare I say, warrior.  She fought the good fight.  Inspired by her, I am going to continue learning as much as I can about this disease, the big business surrounding it, and advocating charities that actually care about those in need *cough*notKomen*cough*.   Rachel touched a lot of lives.  If I could be a fraction of the blogger she was, then I'll have succeeded.