Thursday, October 31, 2013

Sisterhood of the Travelling Mutants

I  never understood the sorority mentality. The fuss over clothes, hair, secret language, initiations, exclusivity. Until I found my Sisterhood of Travelling Mutants. The initiation is brutal- it is essentially months of cocktails(of the chemo variety) and shaved heads, speaking in code- words like neutropenia, hereditary tumor suppressor malfunction, prophylactic mastectomy or oophorectomy speckled throughout our lexicon.

I never valued the importance of sisterhood until I needed it most. A motley crew we are- scattered about the United States- and even across the oceans. The requirement to join is simple- merely be living with Li Fraumeni Syndrome, no minimum cancers required.

Years ago I joined Facebook while Lily was in Chemo. I did not join as a way to keep in touch with people or get back in touch with people- it was merely to help a friend farm some land to get to the next level. 2 weeks later after calling Phil at work and imploring him to harvest some pumpkins because I had to run errands- he held an intervention. I deleted the app and went about my business. My friend list had grown, putting me in contact with people I hadn't talked to in years. Sometimes this is a good thing. Sometimes.

 I noticed people were in groups and started searching for relevant groups- like Li Fraumeni Syndrome. There was none. So I made one and invited my family. I found the only other support group for LFS on a site called MDJunction and invited them over too. Pretty soon there was a group of people who got it, asking relevant questions and giving amazing advice about how to live with hereditary cancer. Mostly it was just lending an encouraging word after yet another surgery or rough bout of treatment. It was virtual hand holding over fears of scans that could change your life. It is a community of friends. A community of mutants. Some do not like the term mutant, but we wear the badge of distinction with pride. Ours is not the average cancer journey.

Over the years our group has grown. There is an occasional controversial topic, but all in all it is the most supportive, understanding group of humans I have run across and I am honored to be among them, despite the devastating reason we are there. None of us would be who we are without the adversity we've faced.  We have moms who had cancer while pregnant then faced it again with their children. We have moms who have multiple kids going through treatment- at the same time. We have siblings who share the horror of being breast cancer buddies. We have young women making tough decisions about mastectomies since they've already had more cancers than most people's grandparents. We have people who are the last surviving member of their family. We have people who have lived through dozens of cancers and been told multiple times- go home, get your things in order, there is nothing else we can do for you. We have lost friends and mourned with their families.  All of this through a virtual world.

When we heard there was going to be a conference in Boston for our special brand of mutants- the messages started flying. Plans began to take shape. We all know how short life is and opportunities like this are few and far between. I made plans to go solo- gasp! The mere thought of a few days with women who had been my life line through breast cancer and all of Lily's ups and downs was exhilarating. Women I could vent to when well intentioned friends said the wrong thing, again. Women I worried about when their kids had rough patches and scans. Women who could not seem to get a break from cancer after cancer or had to deal with continual medical incompetence. We look out for each other, cheer each other on and most of all handle each other with careful honesty shrouded in sarcasm and laughter.

I had lined up a room for us to crash- true dormitory style. And then the cough hit. Suddenly I needed these women more than anything and the hope of meeting them was flying out of reach. Yet they were the first ones I needed to tell. They were doing research before I even asked. They let me be me when I landed in that scary dark place of "tooma gloom and dooma" and they guided me back out. And they insisted that I go to Boston. I no longer wanted to go without Phil. I no longer felt like I needed the "me" time.  There was going to be another husband there- he actually used to work with f-15s- I knew he and Phil would get a long, it was meant to be. Between appointments and research and decisions- the trip became a beacon of strength. It helped shape the calendar and my mood.

As I walked into the bar at the Inn at Longwood Medical in Boston- I spotted one of my favorite mutants. We were fortunate enough to meet years ago in Maryland and she is like a sister. She tells it like it is, tells you to suck it up and put your big girl panties on but she also will make you laugh so hard you pee in your big girl panties. She will also be the first to call whoever needs to be called to get you an opinion or help. If you can't laugh through this mess, then all you have is mess.  She pulls me towards the table and I know everyone immediately- even though we have never met- we are family. A family brought together by circumstances we can't change. We barely finish hugs when more mutants arrive. It goes on like this for hours. Poor Kevin, Poor,  poor Kevin- a wonderfully nice chemistry major on his 5th day of work waiting tables there had no idea when he showed up that night- a room full of mutants would be his charge. I'm pretty sure he will never be the same- but then again neither will we. None of us chose this, but we live with it- sometimes gracefully- sometimes clumsily- sometimes very very angrily. I'm sitting at a table full of women- 2 husbands sequestering themselves to the end - in awe of us, horrified by our collective candor and trying to catch glimpses of the world series all at the same time. My cousin joins the party and I feel complete. We talk about getting all of our kids together- a merry mini mutant party. It never ever ceases to amaze me how sometimes the most horrible things are the very things that give you what you need. And these women- my sisterhood of travelling mutants give me hope when I am facing a tough journey. They give me socks to warm my feet in the chemo bay- a signed pillow to catch me when I need a rest, a charm with a compass to guide me and know that wherever we are- the others are only a call away. We laughed. We compared scars. We talked about hair and lack of it.  It was the family I've missed all these years. The Mutants took Beantown and I'm pretty sure Boston will never be the same- I know I won't be. And for that I'm grateful for LFS.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)