Thursday, June 28, 2012

Carly Aka Char shared an Instagram photo with you

Hi there,

Carly Aka Char just shared an Instagram photo with you:

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"I always feel like somebody's watching me... (my friend's daughter xo)"

The Instagram Team

Saturday, June 23, 2012

It's summer

Drink it up... The late afternoon thunder, the days which all too quickly grow shorter.

I gardened all day, (this little fellow hitchhiked home with me from the garden store...) and now I am making dinner while I drink a glass of wine in my shorts and a polo shirt. Bliss!!

I am taking care of my friend's dad's garden while he's in the hospital. It's a beautiful, serene setting tucked away behind his house on a busy street. It's been 90 degrees all week, so I have made it my mission to keep everything from wilting. This means half an hour of wrestling with a super-long hose at least once every day, but I don't care. Each time, I notice something new while I water. (Ooh, I want one of those. And some of that. I wonder what it's called...) I want him to get well soon and teach me about his flowers, and to design an entire garden for me.

Monday, June 11, 2012

Relay afterthoughts

I realized that I didn't make the point I intended to make in my previous post, which is that every cancer patient's path is unique.

Many people don't even know there is more than one kind of breast cancer (I had three types of tumors...based on where they started and where they spread. There are also classifications based on how the tumors respond to estrogen, and so on.)

I now have a collection of shirts in various shades of pink with Komen logos and a purple ACS Survivor shirt and even one with "the chemo made me do it" on it. (Honestly that is the one I like best... I had fun wearing that when I was bald. It made people laugh WITH ME, which is how I wanted to go about things. )

I am often reluctant to wear the others, and draw random people's attention to the fact that I had cancer. It's behind me to some degree... except for the checkups and tamoxifen. And I don't want people to project their impressions or emotions on me or place me in some classification in their head that has nothing to do with who I really am. I am not the Boobie poster child.

The internal dilemma is that I sometimes need people to understand that part of my personal history, but I don't want to lose my WHOLE identity and just be The Girl Who Had Breast Cancer.

I wanted to circle the track in solitude at one point around 5 am, and this one woman was going the opposite way around and high-fiving EVERYONE. Every time around. It got annoying... I had finally made a tentative peace with the whole setting, and she knocked me off balance again by wanting me to fit HER mold of what Relay should be like.

Don't invade my experience. And I think that's part of my frustration overall with the event. Don't tell me I should tell my story and sob, ...because parts of it are funny, like the way I used to fall asleep on the radiation table.

And each person's experience is different. Their ability to let go of the bad stuff, to feel proud of the victory, to face the ongoing anxiety and other two people are the same and it's not necessarily cathartic or empowering to go to a Relay.

To each her own.

The accidental torchbearer

This past weekend I attended a Relay For Life event.  I have a passing familiarity with it because an old friend had told me of her involvement a couple of years ago, and she made a luminaria bag for me at the event she attended while I was sick.  

My daughter's boyfriend is a cancer survivor of nearly six years. Right as he was entering his teens, he was diagnosed with Non Hodgkins lymphoma.  Because of my personal history with cancer, his mom invited me to join them at a Relay held about a half hour from my home. 

I need to stop here and beg for your indulgence. I'm afraid that some people are going to finish this post, and think that I'm really just a jerk. But I need to be honest, because I have a point to make behind my story. So, please read my entire post and try to understand where I'm coming from. 

Many years ago Nancy Kerrigan won a silver medal in the 1994 Lillehammer Olympics, and then went to Disney World for a pre-arranged publicity parade. During the parade, she was caught on microphone saying "This is dumb. I hate it. This is the most corniest thing I have ever done." She later said her remarks had been taken out of context: she was commenting not on being in the parade, but on having to wear her silver medal in the parade because showing off and bragging about her accomplishments was something that her parents had always taught her not to do. She went on to say that she had nothing Disney or Mickey Mouse ( "Whoever could find fault with Mickey Mouse? He's the greatest mouse I've ever known.")

That image popped into my head the other night, as I was carrying a tiki torch part of the way around the track. I felt wildly out of place.   It was Friday, and after a long week of working and not ever really sleeping well, I was already exhausted and it wasn't even midnight. I knew I had all night ahead of me. But I'm getting ahead of myself.

I think that part of my issues and general admitted crankiness was that there were several factors that had drained some of the enjoyment from the start, for me.   When we left our house for the relay, we were disorganized and trying to hurry, and forgot a few things that I REALLY wished I had later. And it rained... and rained...  but I'll get to that later. 

The Relay opens with a ceremony, and at the event I attended a very young breast cancer survivor told her story and cried through at least half of it. I wanted to flee. My friend asked me conversationally later, So did you cry during that speech, and I said yes, because it did bring tears to my eyes, it was very sad... but I didn't go on to say that I am always uncomfortable when emotions are used in a fundraiser setting.  Tugging at the old heartstrings turns me off. 

She then lead all of the survivors out onto the track for the first lap.  I was somewhat uncomfortable with everyone else just liniing the track and clapping for me.  I didn't feel like Rocky, pumping my fists in the air.  It was so hard for me to explain - because I'm not shy and I certainly enjoy being the center of attention.  I struggled with what was going on in my head, and decided that a "victory lap" of sorts didn't feel right to me, because I didn't cure myself... I had about 50 medical people who treated me, and I managed to stumble over my cancer and get it properly diagnosed and get through everything in relatively good shape.   

The caregivers joined us on the second lap, and I have to say, that was very nice, to acknowledge a few of the people who took care of us survivors. Then everyone else joined in. 

The track was lined with small white bags, each holding a small piece of tile and a votive candle.  Walk participants can decorate a bag in honor of a survivor, in memory of someone lost, and so on.  The wind was quite rough that night.  Some of the bags were blowing over, but they weren't lighted yet. 

After a short time, the rains came.  It was a MONSOON. I am not even kidding.   I didn't remember my rain jacket.  I was siting under one of the large pavillions that belonged to my friend's team, so I was able to get out of the rain. It thundered and I questioned the logic of sitting under a canvas and metal structure, but the lightning never got too close. 

The luminaria looked a little rough after that.  On my next lap around I noticed how many had been ruined... carefully written sentiments were streaked and washed out. It was very disheartening and almost a little bit morbid. 

There were volunteers assigned to light the candles in the bags, and they were working carefully.  I really didn't understand how the bags didn't catch fire. I guess the tile keeps the bag stable normally. 

Soon it was time to dim the lights and have the luminaria ceremony. Someone grabbed me and asked if I would help carry the torch. What? Me? Oh here we go again.  I'm not brave and noble. I went to the doctor and shit happened and I got out by dumb luck. I was stoic, but not a plucky heroine. 

I agreed, however (not wanting to seem like a total asshole) and was placed at a spot where I would receive the torch from my daughter's boyfriend. I listened to the whine of a generator while the DJ said something over on the other side of the football field, and then the music started. There was a bagpiper, playing Amazing Grace. Over. And over.   I like bagpipers. I even like singing Amazing Grace.  But again, strings, pulled. Because in addition to that going ON AND ON, there was EVERY cliche song you could think of.  Tim McGraw, Live like you were dying (which I heard during a radiation treatment because a country music station was left on for me).  Whitney Houston, I will always love you.  And on and on. 

K handed the torch to me.  I guess I was thinking it would be a fancy torch of some time, and not realizing what an impractical image I had in my head. It was a tiki torch like someone would use during a garden party in the summer to keep bugs away.   That was when I heard Nancy Kerrigan in my head ".... this is so dumb..."  Then I was  REALLY angry at myself and my emotions were COMPLETELY mixed up. Everyone was SO into this experience... except me.  

I handed off the torch to the next woman, and walked along with the other people (everyone kept walking, instead of stopping when they passed the torch.)  Everyone was so quiet.  It felt wrong to me.  I wanted to be cheering, or SOMETHING. (Wait... didn't I say I didn't like it before when they clapped for me? I mean that  * I  * wanted to be singing some sort of victory song. I'm a survivor, dammit. I am happy to  celebrate but you don't have to pin ribbons of honor on me.  But I am ever mindful that many people do the Relay in honor of someone they have lost to cancer. So the sadness is very much a part of the event, and  I had to bottle up some of those thoughts and feelings. ) 

I did say to K,  Why is everyone so quiet?  He gave me a funny look  and explained that this ceremony was SUPPOSED to be silent except for the music. I hadn't heard that over the generator.  D'oh.  

I noticed that most people shared a brief hug as they handed off the torch. Obviously I didn't hug my daughter's boyfriend, and when I handed it off to the next woman, I didn't know any better. I guess that's good, because I would have been uncomfortable feeling obligated to hug a stranger. And yet..  watching the other survivors hug disappointed me a little, because they were sharing a little bit of something and it undescored for me how isolated I've been feeling about some of the lingering effects... the scars, the anxiety at pending doctor appointments approaching, the frustrations of tamoxifen... 

The night went on. And on and on. It poured. The winds attacked the luminaria again with a vengeance.  I saw some bags literally burst into flames and burn down to nothing.  I said to my friend at one point "Are they supposed to ALL burn?" because it seemed like I just saw so many on fire.  She was horrified and explained that she'd never seen ANY catch fire.  It was all the more troubling to really ponder the bags that were reduced to cinders, and volunteers cleaned them up as quickly as possible. 

It got down below 50 degrees around 3 am. By then I was just having trouble coping with it all.  It was freezing and the kids were noisy (hey, THEY were having fun... but at one point I was typing a note to myself that was basically SHUT UP SHUT UP SHUT UP because I was cold and wanted to sleep in my chair a little while, huddled in my friend's sleeping bag, and there were teens near me being super loud.  Ohmygod-I'm-so-old. )

I felt guilty leaving, because I was so happy that the event was over. I was cold and achy and hungry and tired. I had walked seven miles before viscious plantar fasciitis set in. I went home and slept, and then talked to my sister. We concluded that I have moved on in a healthy way; I don't need to dwell on my cancer and talk about it constantly anymore. I guess that's why I don't blog as much lately, in addition to being crazy busy with my mother and father in law. 

 I did realize recently that when I meet someone I want them to KNOW what I went through, but then after one conversation I don't really need to talk about it or bring it up again. (I think that goes to where I am in life, my "career" and finiances not being what they were a few years ago, and feeling defensive about that. ) 

 I am always grateful to the American Cancer Society for the help I received while I was sick, such as the Look Good Feel Better workshop,  which was truly a wonderful thing that I really needed. I'm hoping that in time I might be able to embrace the Relay experience and enjoy an evening with the weather actually cooperating and me being properly equipped.   But I think next year I may do the fundraising page and just quietly not go to the actual relay.  Maybe Nancy would understand.

Tuesday, June 05, 2012


This is another shot of my new baby. It makes me giddy still. Don't know why. It's just SO cool, to me.

My mother in law gave this camera to my father in law the first year they were married (1959). It cost about $65 which was a small fortune at the time... Mortgage for a month or two, really.


1) this past weekend I took 900 photos at my cousin's wedding. I adore her... She cried and ran over to hug me when I showed up at the rehearsal unexpectedly-- I haven't seen her in person in years, and she was sooo good to me while I was sick. There is a pocket of people on the other side of my home state who are so kind and loving to me... even though I am but a wife of a third cousin... I am very happy about that.

2) I shoot ballerinas again now - tonight was dance recital night. Or, "don't take a fucking picture on our backdrop with your phone, stage mom"... Longtime readers of my blog will understand.

3) Shooting myself in the foot.... I went to DMV today with a form that WASN'T SIGNED by my husband and the clerk pointedly asked "is he in the car???" threeeeeeee times before I said OH! Yes. I'll be right back.

In other words, I provided some people a much needed laugh today. Because, what's fun about dee em veee other than laughing at the girl who isn't awake yet???

4) just when I am about to lose my mind over the little quirks of dealing with 24/7 care for my inlaws, they clean out a drawer and give me a camera (shown above) from 1959. I die. I need to put a real roll of film in this baby. Just 'cause. The leather case makes my heart sing.

5) At the wedding, I took awesome photos (if I do say so myself) of Everett Lee and Underground Stampede, a country band that rocked the vineyard - check my instagram out (carlyq80) for just a couple of the best. Because really, 900 photos? Oy vey.