healthy… sick… what am I?

I find myself teetering on a very delicate balance between being swallowed up by cancer and living a normal, happy life. ¬† I don’t quite fit in either. ¬† ¬†Cancer has consumed me so much for the past year that when I write “ca” on my phone the auto spelling finishes the word “cancer” not can, cat, cantaloupe. ¬†Always cancer. ¬† ¬†My facebook newsfeed is filled with cancer organizations, friends facing cancer, friends dying of cancer. ¬†I can tell when people look at me they think “that poor young woman with terminal cancer.” ¬†But, I am not sick right now. I’m training for a 1/2 marathon, running kids around town, updating light fixtures in my foyer, leading Hope Scarves,¬†etc… ¬†Yet, I am not a¬†healthy, carefree person either. ¬†My first thought when I wake up is sadness. ¬†I find myself crying in bathrooms when I am out with friends just overwhelmed for a moment. ¬† I think some people shy away from asking me to do things because they aren’t sure how to engage with me and my family. ¬†Am I sick? ¬†Am I healthy? ¬† Neither?

I don’t understand. ¬†I don’t expect others to.

54eb4a43af3d79f23c96e7cfLast week our family went to Montana with a couple other families for a ski trip. ¬†It was amazing. ¬†We had such an awesome time together as a family – who by all accounts was just like everyone else. ¬†Healthy, happy, vacationers… I fell for it too. I took a vacation from cancer. ¬†Which I am so thankful I was able to do… I know for many people facing this disease that isn’t possible. ¬† And, I didn’t take it for granted for one sunny moment. ¬† While the kids were in ski school a couple parents¬†went all the way to the top of Lone Mountain. ¬†I skied a steep icey black diamond with rocks jutting out as the blur or my tears fogged my goggles. ¬†I never thought I would be strong enough to do this again. I let go of fear and just felt my thighs burn, my heart pounding in my chest. ¬†I gasped for air at 11,000 feet and felt so much joy. ¬† Up there I wasn’t a cancer patient. ¬†I was strong, healthy and capable. It was so amazing to escape reality.

What is the right way to live? ¬†Do I live in the joy of today and forget about cancer while I can? ¬†Just laugh and play and not let it dominate my thoughts and time?? ¬†Or, do I take this beast by the horns and advocate for change for me and others? ¬†Raise money for research. ¬†Raise awareness about the realty facing people with stage 4 breast cancer. Fight for more substance¬†in the pinkwashing that has hijacked breast cancer? ¬†Lead www.hopescarves.org¬†with the passion of helping others facing cancer have hope in the face of fear…

Teetering…

I have always given 110% of whatever I took on. ¬†Engaged parent? ¬†Yup – room parent for both kids, party planning, class playdates… ¬†Adventure? ¬†1/2 ironman¬†triathlon, skydiving, waterfall repelling…¬†Education? ¬†masters degree, check. ¬† ¬†So, terminal cancer patient. ¬† How do I do this in the “best” way possible? ¬†But, at the same time not become my diagnosis? ¬†I am so much more than cancer. ¬†I don’t want that to be all I think about, write about, talk about… but, that IS who/what I am.

Balancing…

Somehow I will¬†figure out how to be joyful while also recognizing the harsh reality I am facing. ¬†One foot in a happy world. ¬†One in a dark, scary place. ¬†My heart torn between the two. I will perfect my balancing skills. ¬†Surely to trip up and fall completely into one or the other at one¬†time or another. ¬†Terrified of the time when I can’t climb out of the dark place.¬† Balancing this life for as long as I can. ¬† ¬†Just like holding the tree pose in yoga – I guess core is the key. ¬†Strengthening the very core of my being to hold myself up when my standing leg shakes and I fall to the side. ¬†Get back in the pose… hold it as long as possible… ¬†only with terminal¬†cancer- I can get knocked over no matter how strong my core is. ¬† Strength can’t hold me up forever.

As I balance between the two worlds- I appreciate your support. ¬†I can’t balance like this on my own. ¬† Don’t worry about how to best support me in this balancing act. ¬†I don’t know either. When you¬†reach out and lend a hand you¬†hold me up. ¬†Maybe as I lean into the¬†world of joy – dinner, theater, running. ¬†Maybe as I tip into¬†the world of fear – doctor appointments, crying, anger. ¬†We wobble together…for as long as we can.¬† I appreciate not being on the see-saw alone.

teetering,

Lara

Face of Hope, February 2015 – Suzanne (Louisville, KY)

1 cymbalta generic. How did you become connected with Hope Scarves?

My friend Mo, who’s friend Erica works at Hope Scarves, sent one to me just prior to my staring chemo.

2a. If you received a scarf and story please share how this impacted your healing journey.

I recently returned the Hope Scarf Mo sent me, sending it full circle. This was my power scarf. I wore it any time I needed to draw on the collective strength and courage of the women who wore it before me. I wore it in a TV news interview, to a meeting with my Congressman, and to chemo. I loved being able to send its history on to the next recipient. It feels like I’m part of something larger than myself.

2b. If you shared a scarf with a loved one please share this experience and what it meant to you.

One of my best friends from high school was diagnosed with breast cancer a few months after me. We were like sisters back then and now we are sisters in this. Sending her a Hope Scarf symbolically marked the re-establishment of our close bond.

3. What are the things that provide hope and strength to you throughout your battle?

When diagnosed in January of 2014 I was in the middle of a grassroots campaign here in Kentucky to help people with epilepsy and other conditions access a form of therapeutic hemp oil. It was a challenging campaign since the public and state legislature didn’t know much about the issue at the time. I didn’t know if I could continue that with the challenges of chemotherapy, continuing to work at my job and caring for my son with severe autism and epilepsy. But then I saw Lara McGregor of Hope Scarves and Jill Connely of Jill’s Wish, two young Louisville women with breast cancer living their missions and I realized I could, too. Our law was passed in March. I am grateful to them for living so openly. They made me feel more confident and less alone. As a result, I have chosen to be open about my cancer experience as well.

4. Where are you currently on your cancer journey? Tell us how you are living life over cancer.

I finished major chemo in June 2014 and have Herceptin through March 2015. Once our law passed in Kentucky it was clear that more work needed to be done at the national level. I joined forces with parents of epileptic children in other states to advocate nationally for this treatment. My chemo chair has been my command center where I’ve helped run those efforts. I can have everything I need right there: laptop, phone….and OMG free time to get it all done!

5. What do you wish other people knew about Hope Scarves?

I want them to know Hope Scarves exists, that sending a scarf to a woman with a chemo-treatable cancer is a tangible way of lending support that she’ll always remember.

6. What would you tell someone who is thinking about sending a Hope Scarf to a friend battling cancer?

Do it. It will mean so much to her. We tend to be so afraid prior to beginning chemo because we don’t know what to expect. Hearing from someone on the other side of that journey is such a comfort.

7. What is one of your dreams or goals for the future?

We just put some communication apps on our son’s Ipad. He is twelve but his verbal ability is that of a two and a half year old, though his reading ability is beyond that. I will help him learn to communicate his more complex thoughts in writing, to the best of his ability.

8. What is your favorite inspirational quote or words to live by?

‚ÄúWhen you feel you cannot go on you must, not for what you will get but for who you will become.‚ÄĚ ‚Äď Bob Proctor. This quote has been on my refrigerator since I was diagnosed.

9. If your friends or family had to describe you in two words, what would those be?

Passionate and caring, I’m told.

10. Please share something you learned having gone through cancer ‚Äď either as a survivor or as having a loved one with cancer.

I have never been comfortable asking for help. During cancer treatment I had to depend on others. I am very moved by those who stepped up to help. My husband who took care of everything. My brother-in-law, Stephen, who helped our son maintain a normal schedule when my husband had to work or take me to treatment. My mother, who lives far away, made a special trip to see me and cleaned my entire house. My family and friends, near and far, who gave me encouragement when I needed it. Since I work with children I had to miss six weeks of work so that they would not get me sick. A breast cancer charity helped me compensate for my lost income. I have learned to ask for and accept help.