Monday, August 18, 2014

The “Magic” of Camp Kesem

Camp Kesem is a network of camps for children affected by a parent’s cancer.  

And, let’s be honest, every child is affected by a parent’s cancer.

The camp is 100% funded through donations, grants and all-scale fundraisers making it free of cost to participants. Kesem means ‘magic’ in Hebrew and, now that my children have attended and returned from camp, I can only nod wildly in agreement with the idea that this camp is indeed magical. Camp Kesem is not designed as a cancer camp. The camp is actually focused on typical summer camp adventure, fun and frolic yet brings together a unique peer group and provides the opportunity for deep connections. After five days, both my children returned healthy, happy and transformed in some very specific ways.

Prior to camp, I thought my children were all cancer-talked out.

We have talked openly with the children about cancer since a friend’s shocking Stage IV lung cancer diagnosis in May 2012. We continued to speak frankly after my mother was diagnosed with Stage IIB breast cancer in January 2013 and my uncle diagnosed with Stage IV lung cancer in April 2013.

When I was diagnosed with breast cancer in May 2013, there was no possibility that we would hide anything from the kids.

After my diagnosis and an honest conversation about fears, we made one family rule, Brandon and I would share everything with the kids but I needed to make sure I had come to terms with it first. We have operated pretty successfully in this manner for the past 15 months.

When I registered the kids for camp eight months ago, I was mentally preparing for yet another surgery. Most of our family dynamic still involved daily conversation about my breasts or my doctor appointments. Or Grammy’s chemo. Or Cheryl’s death. By the time this summer rolled around, I thought my children were all cancer-talked out but I still wanted them to experience the freedom to discuss and process cancer and the effects of the last year on their own terms, with support.

So off they went to Camp Kesem.

Regardless of how open and honest we are with our children - we aren’t kids. Children don’t have the same world perspective, the same fears or even the ability to process emotions based on decades of life experience. And the moment I was diagnosed, both children stepped into a role of trying to protect me from their own fears and feelings. I didn’t know if they’d share anything at camp, but I wanted them to have the option and the opportunity.

The intimate details of Camp Kesem SCU’s inaugural year is not my story to tell. I wasn’t there – THAT is part of the magic!

Yet I have listened intently to their retelling of “amazing” food, fencing adventures, card tricks, silly skits, uphill-both-ways-hiking, teeny rock walls and swimming pool extravaganzas. Evidently both children took leadership roles, learned new skills and made new friends. I was told that my son "Bacon" filed a formal petition to change the name of "Karl the Caterpillar" to Dave. And I was told my daughter "Jelly" formally requested that Administration “extend camp another four days.” They were obviously feeling comfortable and having fun! 

And I have also listened intently to the description of late night cabin chats that took decidedly different turns for both my son and my daughter. Our son came home and proceeded to regale us with new jokes and a handful of magic tricks learned from a fellow camper during the before bed conversations. Our daughter returned home with pages full of email addresses, journal notes and a visibly relaxed demeanor, which looks fabulous on her uber-mature personality.

Our kids were not steeped in cancer talk for five days; they were steeped in support. Over the past week, they each found the strength and courage to ask for what they needed and give back what they could.
They forged unique relationships with new friends and strengthened friendships that actually existed long before cancer or Camp Kesem came into their young lives.

Before camp, our children processed their anger toward cancer and their fear and frustration together. And yet they dealt with their feelings very differently. Our daughter put on a brave face; she soothed all of us and outwardly focused on the positive. Our son asked a lot of questions and processed on what felt like a very intellectual and very unemotional level.

Camp Kesem cabin chats became a catalyst for them to explore valid emotions they’d hidden from me and possibly themselves. And, for them, the Empowerment Ceremony became an opportunity for them to not only feel, but to share (and in some cases let go of) those emotions.

My daughter: “I was angry. No, I was pissed.”
My son: “I cried. Oh, I cried.”

In the few days since their return, they’ve mentioned going back next year more than a dozen times.

Last summer we were deep in CancerLand. This summer is so very different. Camp was fun, camp was restorative and camp was all about them.

When I arrived to pick them up, all of the kids and counselors were just getting into a circle. They all locked arms and sang “Stand By Me” while swaying together:

When the night has come
And the land is dark
And the moon is the only light we see
No I won't be afraid
No I won't be afraid
Just as long as you stand, stand by me

There are days I do not want to be known as a cancer ANYTHING: caregiver, patient or survivor. And then there are days that I need to talk ad nauseum with others who understand cancer’s realistic toll and lingering emotional and physical effects. Thankfully, I have a strong support system that enables both sides of that coin.

And now my children do too.

Thank you Camp Kesem SCU for this little bit of magic.

Wednesday, August 6, 2014

Cancer Puberty - Growing Back into Health

Today I realized that almost two months have passed without a blog post.

No wonder I feel a bit wonky.

Since adolescence, writing has always been a processing mechanism for me. A poem in a moment of passion; a never-to-be-sent letter in a moment of weakness; a diary entry documented in a moment of confusion; a smattering of song lyrics in a moment of overwhelming joy.

And blog post, after post, after post during cancer treatment.

Whatever the product, writing has always been the process that brings relief from, comfort to and validity for some of my larger-than-life emotions.

Walking today with Becky, a new friend who has just begun chemotherapy for breast cancer, I revealed my recent desire to not identify myself as a cancer patient. I had only just revealed the same sentiment to my husband so I was a bit shocked when the words tumbled out of my mouth this morning.

I struggled to clarify my sentiments this morning. 
I am happy to talk about my 'journey', I just don't want cancer to be one of the first three things people learn about me. I am delighted to share my story to support others but am tired of being surrounded by pink ribbons. I am immensely grateful for the unwavering support of family, friends and total strangers but I have started to bristle at any looks or words of sympathy. 

Since Day One of my original diagnosis, I have been open and honest about my decisions, fears and successes. I have shared surgical hiccups, emotional ebb tides and grandiose recovery plans. My openness educated others, demystified breast cancer and created a comfortable environment for my children, husband and friends to openly share their concerns and frustrations. My openness allowed me to shed light on my fears, making them a little less scary. And my openness unearthed a peer group that is absolutely unparalleled in understanding and emotional support.

I have no regrets.

Yet, especially in the last few months, part of me has wanted to forget and erase the cancer part of my life. I want to pretend it never happened. I don’t want to know some of the things I know and I don’t want my family and friends to have to know them too. I know they cannot forget. I know I cannot forget. 

Sometimes I just wish though. 

Nothing is wrong. Depending on your choice of description, you may describe my condition as in remission, cured* or no evidence of disease (NED). 

Nothing is wrong. My cancer was completely removed. I avoided chemotherapy. I’ve had successful reconstruction and, although I will require another surgery to correct a seroma and a slight contracture if I want to really be symmetrical, my prognosis is excellent.

Nothing is wrong. I left the high tech industry and have taken my skills into the realm of patient education and health advocacy. I have built relationships and expertise in the health care arena. I am delighted to be using my knowledge and my energies to help other newly diagnosed women process their emotions and navigate their treatment.

Nothing is wrong.

Yet something seems not quite right.

Perhaps I am still pissed off that I cannot do a push-up. I try every day and I am getting closer but almost four and a half months since my last surgery, I’m relegated to a handful of ‘girl pushups’ and a plank.

Glass half-full Stacey can focus on the improvement. Itchy, not-quite-centered Stacey is impatient.

Perhaps I'm a bit fatigued by individuals insisting one day soon I'll wake up and view cancer as a 'gift'. I have the utmost respect for positivity yet, despite their passion regarding the evolution of feelings, I do not and cannot conceive of considering cancer a gift. 

Perhaps I’m still a bit self-conscious about my new body that clothed looks just like the old body. More likely I’m actually irritated that I’m allowing body-image to play a role at all.

Becky asked me if perhaps this itchiness was a product of my ‘moving into survivorship’ and beyond the patient perspective.

Perhaps. There really isn’t a map. I don’t know where I am on the path of survivorship. Furthermore, I don’t think it’s going to be a straight line.

I have blamed much of the ‘off’ feelings on Tamoxifen but I have to say, the vague irritation, the misplaced frustration the nothing-is-wrong-but-something-is-not-quite-right emotion feels oddly, and yet remotely, familiar.

I feel pubescent.

Remember those awkward middle school moments when you’re trying to figure out which peer group you really align with? Remember feeling on-top-of-the-world one day and bitchy at the world the next? Remember writing out your emotional randomness in your journal and hoping someone would read it so they’d understand you better? (Oh, wait! Was that just me?!?)

I believe I’ve figured it out. 

Tamoxifen may be responsible for some of the mood fluctuations and memory issues, but the puberty analogy resonates. Queue the wildly random and mildly illogical thoughts and feelings - I am in the midst of survivorship puberty. I’m growing up and looking for my survivor peer group. I believe that means I’m growing out of cancer-ville and back into health.

Any others out there in the midst of 'survivorship puberty'? 
Anyone grown-up survivors have tips, tricks or suggestions? 

* Cured is actually a misnomer on several different levels but I’ll save that argument for another day.