Walking the Walk

On December 15, 2006 I entered the cancer world, and my life changed irrevocably. From a mother's perspective, when your child is diagnosed with the disease, you contract it as well. There is insufficient biological defense within our systems, and no newly developed vaccine exists to counteract the insidious symptoms of horror, anguish, exhaustion and overwhelming suffocation by grief.

Any semblance of what I knew as normal shattered that day, and I stood helplessly as the shards of my existence flew in all directions, scattering about as I heard the words "I'm so very sorry to tell you that Erin has Ewing's sarcoma."

The largest shard found my heart, its flight path directed by my maternal homing device, and left it in a state that is irreparable.

Since December 18, 2009, I've worked earnestly to gather those strewn pieces of myself, align them in a cohesive pattern and move forward with the intention of orienting myself, finding my life's purpose now that Erin is no longer here. A portion of that process has been (and continues to be) accomplished through my writing endeavors, through the cathartic purging of ~ cancer/cancer treatment issues reflective of our own personal experiences, my responses to living a skewed existence both during the time Erin was sick and since she has died, coping mechanisms I've found helpful and comforting, reminiscent trips down memory lane through the use of many photographs with good times too abundant to count, and the encouragement of ongoing awareness through the avenues of blood donations and fundraisers. Your support through blog "comments", emails and generosity in response to those causes has been a critical part of my healing. Thank you.

While reading over my past blog entries, I discovered that the path to which I found myself drawn very shortly after Erin passed away and which I expressed in THE ROAD NOT TAKEN, written last March, is the same one I continue to walk, thereby affirming my continued resolution to engage in rather than detach from life.

For three years, I watched those who cared for Erin with a critical eye, most likely in a way that was more judgmental than I would have had I been the one with the cancer. My maternal protective instinct was front and center. I watched and I learned... a lot.

I found that it was not only the physicians that made the difference ~ God bless each and every one of them, those fine, educated, accomplished and compassionate individuals. They did everything possible, at first attempting to cure our child, and when that was no longer going to happen, they helped us make the best decisions for medical treatments that enabled her to remain engaged in a full life for as long as possible. And then, when it was time to take her home for the last time, they provided us with all the necessary resources, ensuring her continued comfort.

Even more than the doctors who were around only some of the time though, it was primarily the nurses, and then also the support staff of lab assistants, service representatives, registrars and even parking lot attendants & cafeteria personnel that helped create our new normal. Each had a hand in helping Erin learn to integrate successfully into a daily existence that was so unlike that of her peers. While she was getting hooked up to bags of toxic substances after school, her friends were all doing what she used to do ~ attending volleyball practice or going home to have a snack and watch TV.

Erin would get in the car after school, begin munching on the standard cinnamon raisin bagel with cream cheese I'd packed, pop open her Pepsi and say, "Let's go kill some cancer!", and we'd head off for her standing 2:30PM "practice" time. Daily drills included shouting "I call a chair in the back today!", accurate peeing into a "hat", and her very favorite ~ Port, port - where's the port? - Can we get it on the first stab please?!

All of those wonderful people not only performed the task at hand (scheduled labs, administered chemo, brought food trays promptly, etc) in an efficient and judicious manner, but they also used the time as an opportunity to take an active interest in Erin, getting to know her on a personal level and treating her as a unique individual.

They told her how pretty she looked, and asked how her vacation was and really listened with interest to the answer. They knew she was a Cubs and not a Sox fan, and they scheduled a room as opposed to just a chair on days I requested one because she had a test in school the next day and needed a quiet place in which to study. Later, our buddy Steve, who was Erin's home care nurse through the spring of her senior year, endured countless episodes of The Gilmore Girls after school during her 3-hour chemo sessions, and was often rushed out the door to "Please hurry up and unhook me because I have to get to the boy's volleyball game!".

The staff provided a positive atmosphere, a smile, a conversation pertinent to Erin's individuality and laid the groundwork for a sense of normalcy to the day-to-day circumstances in which she was forced to live for quite a lengthy time. They leant routine, and therefore, a sense of stability. As I initially floundered my way through the vast unknown of this foreign existence, I looked to these kind souls for guidance, and I found it through their competency and their grace-filled compassion.

Their direction gave me substance, something concrete to grab and hold as the cancer stubbornly forged on with a mind of its own. Through their example, I was able to understand that there are few things we ever really have control over in this crazy cancer life, but a couple of really important ones are the ongoing, consistent response and abiding dedication to the ones in need.

And then there's Erin who showed me, by the example of LIVING daily with her ever positive and spirited attitude, that it's truly possible to navigate both a world filled with chemotherapy, radiation & surgery, and a life where a "normal" human being ~ a teenager with interests outside the jaws of the medical giant ~ can really Have Fun.

After much introspection about all of the above, I find I need to stay with the cancer world. This existence, which I initially feared and detested, by necessity became my world, and I now find myself rooted here, grounded by an accumulation of STUFF (I'm at a loss for a better word!) deep inside me that needs to be shared with others through more than my blogging and awareness-promoting efforts, though those remain very important. This ongoing reflection has brought me to a crossroad.

Today, I begin the next step of my life, because I need to walk the walk I've talked about in my blog posts by stepping up to the next level. My new direction is full-time employment within one of the major Chicago-area hospitals in an adult oncology out-patient clinic. It is my intention to take my previously acquired work-related skills of accomplished plate-juggling (I'm up to twelve now!), an often neurotic attention to detail and the ability to smile and remain calm when things get chaotic, combine those attributes with the wisdom I've gained through those three years of critical observation and life experience, carry Erin's beautiful spirit in this broken heart of mine, and attempt to smooth the path for those who are presently at war with this potentially lethal adversary, deeply hoping to make a difference in my own little way.