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This post is an update to the post I wrote in June about working to integrate the cancer survivor part of me with the whole of me.  You can read that post about the beginning of my personal journey here.

I got to spend some time with one of my favorite little people Kaitlin on Friday.  Whenever I spend time with one of my favorite little people I’m reminded how important a safe and healthy future is.  It got me thinking about how my personal cancer story could be used to help show the importance of research.

In 1998, I was diagnosed with Stage 1 breast cancer.  It was decided that I would do the traditional chemo cocktail of Adriamycin and Cytoxan.  This cocktail is so harsh that even at 22 years old I had to have my heart strength tested to ensure I could tolerate the drugs.  On my first treatment, I followed the rule to wait 2 hours to take the anti-nausea drugs and I became violently ill.  Just like all the nightmare stories I had heard.  For the following treatments, I took the anti-nausea pill as I walked out of the cancer center and thankfully didn’t hug the toilet again but I did feel weak, tired, edgy, and disgusting until 4 days before the next treatment.  I lost all my hair including my eye brows and eye lashes.  That was the worst….no wig….no pretty scarf could hide that I was going through chemo after my brows and lashes were gone.  I had sleepless nights, days when I couldn’t get out of bed, and times where I felt normal yet knew the next brutal treatment was just around the corner.

In 2001, I was diagnosed with Stage 4 breast cancer that had metastasized.  I geared up for another 8 months plus of agonizing treatment.  Maybe treatment for the rest of my life, however long that might be now.  Those are the thoughts you have at Stage 4 metastasized cancer.  Back in 1998, I had received my diagnosis on Friday.  On Sunday, I walked into a room where 60 minutes was on television.  I didn’t watch 60 minutes at 22 so the irony here is interesting.  The reporter was telling a story of women who were part of a clinical trial taking an experimental drug called Herceptin.  Herceptin was saving their lives with….get this….no side effects.  They were golfing and playing tennis and looking healthy.  I instantly thought….well, there is always hope.  I never forgot that report or the name of the drug.  When my oncologist said to me 3 years later that they were testing my tumor for the Her2 protein to see if I was a candidate for Herceptin…Wow!  Turned out that because of the amazing results the clinical trial had been rushed for FDA approval and here I was able to use this life saving drug.  I go and get my hair cut short in preparation to lose it again.  I get myself a new wig.  Dani gives me a make-up lesson in eyeliner, eye shadows, and playing up my blush so that I don’t look so sick this time.  I start my treatment of intense radiation which I tolerate extremely well.  I also at the same time which is rare unless you are at Stage 4 Plus…start my new chemo cocktail in combination with Herceptin.  It’s a mild chemo this time and remember….Herceptin has no side effects.  My hair thins slightly….I feel a little sick…but rarely need to even take an anti-nausea pill.  Eye brows and eye lashes stay firmly intact.  I never once wore the wig.  I continue to benefit from the make-up lesson.  ????

This is cancer research in action.  This is what only 3 years looked like towards the efforts to cure cancer.  This is my story and I’ve told it countless times to raise money for cancer research.

As I think about the future for my favorite people like Kaitlin, I have an urge to move forward with working towards a cure for cancer again.  I like focusing on research first because it is more analytical, I don’t have those fears when I think about making an impact focused on research like I will be swallowed up whole again by all things cancer.  Maybe I’m chickening out a little by staying more scientific focused but baby steps.

I think my story is impactful in supporting researchers.  I want others who receive a scary diagnosis to benefit from drugs like Herceptin.  I want people to have positive treatment experiences and not be violently ill if they do have cancer.  I want the cancer of 2017 to look nothing like the cancer of 1998.

I’ve decided that my first step to getting back involved is to learn more about research challenges.  Where can my story help?  Where can I help raise money, why, and how?  I know that groundbreaking research is often ignored for more marketable drugs that big pharma supports and I want to understand those differences better.

If any of you have an opinion or are working in research, or want to offer me direction, I’m all ears.  Please share with me anything you think I should check out.  More to come on all of this.


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