F.A.Q’s

8-8-08.  I remember sitting in a hospital room at Northwestern visiting a fellow young breast cancer friend with another young breast cancer friend.  We were all watching the Olympics and making snarky comments any chance we had.  Just two months later, my friend Courtney died of breast cancer at the age of 23.  She was the first person I knew post-diagnosis who died from this disease.  She went from Stage IV diagnosis to death in 9 months.  Just weeks after her death, I received my own Stage IV diagnosis.  I remember wondering what life would look like if I lived just 9 more months.  Stop right now and think if your life ended in 9 months: April 2013.  The world doesn’t stop, but your life does.  What does that look/feel like?

 

Anyway, back in late 2008, my brother was newly engaged and I remember desperately wanting to see his wedding which was 9 months away.  And, I did.  I also got to meet my favorite nephew, Jaxson and this weekend, we celebrated his first birthday.  One year from the day of my surgery, I got a tattoo on my foot; a cross with a pink ribbon hanging on it.  On Jaxson’s first birthday I got another tattoo, this time on my wrist.  It says “believe” and the font is Corbin’s handwriting.  I originally planned to get it on his first day of kindergarten (t minus 33 days) but since I don’t know what chemo I might be on (or the side effects, low blood counts, etc) I decided to do it on another special day.

 

I’ve been asked a lot of the same questions over and over, with the same implied question behind it.  So I thought I’d give a frank F.A.Q. and put it out there.

 

Q. How are you doing?

A. Lately I struggle with knowing how to answer this question.  The grateful part of me replies, “I’m thankful to be here.”  The realist in me replies, “I’m dying.”  If Corbin is around, the mother in me will look you in the eye and reply “ok.”

 

Q. But you don’t look sick?

A. I’m not “sick;” I have cancer.  If I was sick, that would imply that I would get better at some point.  Most people associate looking “sick” with being bald.  The current treatment I’m on doesn’t cause hair loss, but my body is still deteriorating inside because the cancer is aggressively attacking my organs, even though externally I don’t look “sick.”

 

Q. What happens next?  Short-term?  Long-term?

A. There is a bit of a debate with my local doctors on what to do next.  Short-term, I’m having consults in Indy and Chicago at major cancer centers.  I’ll have a scan mid-August, if there is progression; we hope they (Indy or Chicago) have some ideas on treatment (chemo) and experience with radiation to the liver.  Long-term, we hope that chemo stabilizes the aggressive disease progression.  We will continue to try different chemo cocktails as long as there are options.  Once we run out of options, then hospice steps in.  Hopefully this is very long-term from now.

 

Q. What is hospice?

A. Hospice is often thought of as “comfort care.”  When hospice is involved, there is no active treatment (chemo).  The goal is to make the patient as comfortable as possible in their end-of-life care.  I’ve known people who have been in hospice for hours (literally) and months.  When cancer invades major organs it causes organ failure which leads to death.

 

Q. How can I help?

A. As always, KNOW YOUR BODY.  Know what is normal and when it changes.  I’d ask for prayers for my family and best friends who have given me unconditional love throughout the peaks and valleys of the last several years.  And, of course, prayers for my favorite, Corbin.

 

Q. I bought pink ribbon stuff, doesn’t that help?

I dunno.  I like to think that in sharing my story, I’m helping educate others, but there are so many other powerful stories.  One of which is Angleo and Jen.  Angelo captured what it was like to endure ongoing treatments, side effects, emotional distress, compromised function, and the difficulties and uplifts of everyday living. He writes on his website: “My photographs show this daily life. They humanize the face of cancer, on the face of my wife.” Ever present behind the camera Angelo also documented the sadness, isolation, and love of a couple that would share a lifetime of experience in barely a few years.  Angelo Merendino’s photographs are compelling, compassionate, and real. They are a vision of breast cancer that is too often sugar-coated with platitudes, sassy t-shirts, fun-filled fundraising galas. For some, this reality is too much to bear. But until we as a society are willing to see cancer for what it is, our capacity to support the diagnosed will always be limited.

View the powerfully beautiful photographs as you peek into a piece of my reality in cancerland.  I don’t mean for this update to be dramatic, depressing, or doom and gloom.  It’s just reality of life right now.

 

Lastly, tonight Corbin was getting ready for bed and said, “You’re the best mommy ever and if someone says their mommy is the best I’ll tell them you’re the bester.”  He melts my heart and inspires me to keep going.

Jen

Living legendary as a mom with Stage IV breast cancer. Author of Learning to Live Legendary and What You Might Not Know: My Life as a Stage IV Cancer Patient.

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