Wednesday, October 17, 2012

4040

Right now this is picture number 4040 on my phone, which reminded me that I have a blog. Oops.

I had a very nice experience last night being interviewed by a local news anchor for an October / breast cancer awareness piece.

I felt like I was able to get across my experience with early detection and the treatment options it offered me. The interview was also about my fondness for Dancing With the Stars and other coping mechanisms I used.

Fun... I'm not sure I want to see myself on a wide screen in high def, but we can roll with that.

Wednesday, October 03, 2012

October again (rerun)

This is a post I wrote a year ago, but it's still very much true:

http://goingon40.blogspot.com/2011/10/october-again.html

It explains why I don't wear a pink ribbon every day in October.

In other cancer-licious news, I have been offered a chance to participate in a pilot exercise class aimed at veterans of breast cancer.  It will be free for me, as it is a brand new class that they are creating, and want people to give feedback. I'm excited because I need to really get back to a healthy fitness routine. Once upon a time I was a little bit fitter, and even belonged to a gym and did the weights, treadmills, spinning, all of that good stuff.  LETS JUST SAY, it was over ten years ago and I want that ME back.

I have a treadmill and a universal sort of workout bench, so I am hoping the trainer leading the class will help me formulate a plan. That's what I need, a man with a plan (or a strong female coach with a plan.... not picky here! )

Here's the description...

a 6-week bone building, muscle strengthening, body toning, and metabolic boosting strength session.  This 6-week session is designed for beginners looking to take advantage of the research-based benefits of resistance training.  These benefits include reversing the changes (loss of lean muscle mass, decreased strength, and increases in fat mass) seen in people diagnosed with breast cancer as well as those going through hormonal changes and chemotherapy.   


Wish me luck!!

Saturday, September 08, 2012

Bump In the Night

... these are the things that scare me...




Whenever a checkup approaches, I begin to sense a murky shadow become more and more defined, just behind my right shoulder. That's cancer, sneaking up behind me, waiting to tap me on the shoulder again. It's right. There.

On bad days, I feel like it's not a matter of IF the cancer will come back but WHEN it will, even though my oncologist, He Whom I Adored, assured me that once he was done treating me I wouldn't have breast cancer.  (Then why do I still need to have mammograms? So confusing.  Oh, I can get MORE. Awesome.)

On good days I think  "Oh hell no! I kicked cancer's ass! I need to live like I'm going to live forever (or at least till I'm 93 like my great aunt and her siblings did)  because I GOT ANOTHER CHANCE TO."  Those are the days I stop and take pictures of flowers and little things that I see that just make me happy. My Instagram feed (Carlyq80, naturally...)   is full of happy and bravado.

I went for my scheduled mammogram a couple of weeks ago, with a dear longtime friend who volunteered to bring me to chemo and was genuinely upset when I didn't take her up on it. Fine, I said, will you go with me from now on when I get images?  Absolutely, was the reply. And she hugs me every time we meet, and helps me walk in the building when I just want to run back to my car and drive, and drive, and drive.  And she waits in the waiting room for me, typing away on her laptop, while I go and stand before the machine, shaking, knowing that I will whimper in pain all through those "extra compression on the scars" images I dread so much.


   -    -   -   -


My mother in law is declining progressively. She appears to have Parkinson's. (I've believed so for years, but she has adamantly refused to even HINT at any symptoms to the only doctor she will allow to examine her. He takes her blood pressure, mumbles a little something about the aortic aneurysm we repaired a couple of years back, and goes away, not even realizing how useless he is to us. )   She has good days where she can walk almost unassisted, and bad days where she slumps to the side and forward and twitches so hard she almost falls out of bed, and is too weak to eat or even swallow but a few sips of water. And she sleeps.

I look at her and feel love for her, for the 24 years I have known her, and I feel pain for what she is going through, as the last shreds of her dignity are slowly stripped away. I sometimes go to a dark self absorbed place where I wonder how long it will be until the diapers and wheelchairs and hospital bed will be for me. Years? Decades? I tell my kids to someday put me in a kayak and let me paddle toward a waterfall, and they manage not to realize I'm serious.

I know that some of the gloom I feel is from Tamoxifen, and every now and then I can't take it...literally, I can't take the medicine.  I look at the pill and put it back in the bottle. I will take it tomorrow. And I feel the difference, and it gives me hope, even though I know I don't dare pull that stunt again for another month or two. The day is brighter, and I am more content and optimistic.


   -    -   -   -


The doctor called me into a small room, and I got dizzy. I tried to breathe and listen and understand.  She read my films, and she sees what are probably calcification spots, but until they're larger sometimes it's hard to tell, but there's nothing big enough to biopsy, and I should follow up with my surgeon and probably have an MRI in six months.

I remember how quickly things happened the last time, and I said to myself "This is different. It's not the same." But another voice was saying "I KNEW IT. HERE WE FUCKING GO AGAIN."

I walked out to my friend, and she looked at my face waiting for the smile and thumbs up, and all I could muster was to move my hand in a "Eh, so-so " motion before I started to cry.  I sat down next to her and she put her face right in front of mine, inches away.  "YOU'RE FINE. BREATHE. YOU'RE FINE. You've come through so much, you're going to be fine."  And I cried.


    -    -   -   -


The aide who cares for my inlaws every night seems to have a knack for calling with her daily updates just when I have managed to find a moment of tranquility. She is our guardian angel and my biggest nightmare all rolled into one. She cooks for us, she washes their bodies and tries to help them cope with their steady loss of any independence at all, she cleans their house and keeps us from having to see certain things that would break our hearts. She is a drama queen and a martyr and we couldn't do this without her.  Mom is really bad today and she can barely walk and I had to hold the cup up to her lips.  But I can handle it.  Well what the fuck is it then? She's really bad, or you can handle it?

My frustration bubbled over with one son the night before my visit with my surgeon. We screamed at one another, disagreeing about whether she is well enough to go to get the eye exam she has been demanding for weeks.  I quit.   "YOU take the daily calls" I shout, before I slam down the phone.  My husband brought up nursing homes and muttered some frustrated remark about "until they're dead" and I fled the house. The wind danced all round me as I walked around the pond, comforting me. The darkness closed in around me, and I walked, and walked.


   -    -   -   -

The smell of the hand sanitizer slaps me in the face every time I walk in to the my surgeon's exam room. It brings it all back. The surgeries that left me unable to use both arms for days, the wound that reopened and got infected and stayed open for ten days of misery and excruciating packing and re-bandaging. The tiny yellow tube/ hose that was put in when they took more margins and repaired the other damage. I was so happy to see that go.

The med student is so young, and so very cute and earnest. I was probably out drinking one night in college when he was born. He looks right at me with his big gray eyes, and tries to explain to me that these results are not bad. Not at all. He does a better job explaining that certain words like "probably benign" mean this and that, and they wouldn't use those words if there was any reason for concern, and when you look at the  scores and grades and.... (he starts to lose me there.... but he was pretty damn cute...)

It helps. I start to unclench my fingers. My surgeon comes in and restates everything he just said, and her decades of experience doing exactly this type of thing over and over carry me back to a limping optimism and growing relief. The shadows recede again for a while. I text my friends and let them snoopy dance and cheer for me.

   -    -   -   -


While I was in cape cod, on our last night we went out to an Italian restaurant a bit farther away from the house we use. When we were walking out of the restaurant, the sun was starting to set. I begged Mr C to hurry back. I had my good camera with me, and I wanted to photograph the sunset on the beach 200 steps from our house.

He dropped me off at a point where I could get to the beach in less than a minute. He and the kids went back to the house to play pranks on one another and eventually join me on the beach.  But while I was there alone, it was magical.  The wind was alive around me, and I could feel the endless energy of the earth and the sea. The water stretched out like the future I hope to have, one wave right after another and another. I shot and shot and shot so that when the fear comes back, I will have these photos to look at to remind me how I felt when I wasn't afraid.



Thursday, August 09, 2012

Out of office message

Hi, this is Carly. I'm sorry I haven't posted a decent blog entry in (weeks?). .. Please leave a message.

I have been spending time on my garden and the Olympics and Instagram, when I'm not at work or helping care for my inlaws. Very discouraging. So my flowers make me feel better. This year my garden is looking great. So I'm sorry if you follow me on instagram and don't like flowers. :)

Summer's almost over, so I will go to the ocean soon. (Hopefully, no hurricane chaser this year.) Then my baby girl will be a high school senior :::thud:::

Saturday, July 14, 2012

Knickerbocker 200th anniversary parade - Waterford

Firetruck 00001Firetruck 00002Firetruck 002aFiretruck 007aFiretruck 015a copyFiretruck 021a
Firetruck 023aFiretruck 026aFiretruck 028aFiretruck 029aFiretruck 031aFiretruck 039a
Firetruck 041aFiretruck 047aFiretruck 055aFiretruck 060aFiretruck 075aFiretruck 089a
Firetruck 097aFiretruck 099aFiretruck 116aFiretruck 117aFiretruck 124aFiretruck 128a

Today I abandoned a long scribbled list of things I was going to do around the house, grabbed my camera, and shot about 250 photos of firetrucks. And firemen. And Ladies Auxiliary members. And a few dozen very overheated kids in marching bands.

The fire company hosting the parade has been in existence for 200 years. It was a nice parade, but the blazing sunshine was killing me. I was trying to hide under someone's little popup halftent and dodge two idiot guys who kept getting COMPLETELY in my way. I'd move up or down the street a little way (I was right near the reviewing stand, and everyone saluted as they approached, so that was cool). Every time I moved, eventually they moved again and were RIGHT. In. Front. Of. MEEEEE. Grrr. Stupid boys.

At any rate, I put about 45 photos up on Flickr so please click on the linked images and take a look - there are a few very old firetrucks that are lovingly cared for and taken out for occasions like today. Gorgeous.

Wednesday, July 11, 2012

Sundowning

Sundowning is a term that describes the way geriatric patients decline in the evenings. Weakness, confusion... In the morning my father in law is sharp and witty. In the evening he will look around the house where he has lived some 50 years and sadly say, "I used to have a house that was like this."

The sofa where I sat when I first met then some 23 years ago has been replaced by two chairs that gently lift one, two frail people up, up, up to standing, so they can shuffle to the kitchen to be coaxed to eat, before they return to sit by these windows and nap until the aides insist, "it's time to get up and walk. You need to walk, or you'll get weaker."

Some aides insist, and some just can't be bothered. They would rather read, or slip into a nap themselves, and put their hand out on Friday for a paycheck they don't really deserve.

It is a rocky path and a delicate tightrope. Trying to convey information among siblings without seeming to be too accusatory or demanding or unwilling to help... Trying to placate some of the persistent requests that come from boredom, confusion, frustration at loss of independence... from parents who don't understand we all work full time and have kids and their schedules... It's disheartening.

I don't know why the Hallmark channel moved and you can't watch little house on the prairie anymore. But to fix that I have to find a bill, and slip away from my desk tomorrow, and convince someone on an 800 number to give me information and maybe even arrange for a person to come and give you more than shitty basic cable, and yes I will disable the alarm system so we can save THAT money every month since you always have aides with you...

At the end of the day, we sundown a little bit too. We don't want the one additional call from an aide about some item that needs to be purchased, or to think about what happens next in this downward spiral, and what fights will happen when it comes time to sell the house.

Sunday, July 08, 2012

I'm the lucky one

My dear Stanley, the organist at my church, had a very good day last Monday.  He bought a scratch off Lottery ticket, and he won a little sum of money, so when he was in another store he used his winnings and bought a more expensive scratch off ticket. And saw those magic words:  LIFE   LIFE  LIFE.  He won a ridiculous amount of money.

When I first heard through a text message yesterday morning, I must admit I cried big, selfish tears.  I don't care about the money. All I want is for him to keep playing up there in the loft, because there is something magical up there for me when he is on that organ bench.  I don't want the money to take him away from us.

Then yesterday afternoon, while I was working at our Steamboat festival on the canal, he walked up to me, with a giant grin. Honestly.  EAR TO EAR.  I just couldn't help but beam back at him.  "Are your ears burning today?" I asked him, laughing while a spoke.  I watched the "does she know" flicker across his face, and his eyes narrowed slightly as he asked me "Why?"  My smirk and "Everyone's talking about you" was my reply.  He told me the story and said that he will be on tv in a few days (which I know he hates... he doesn't even like to turn around when the priest has the congregation applaud for us at the end of every season. Stanley has a sign in the choir loft  - Soli Deo Gloria - to God alone the Glory - and it fits him to a T.)  He won't be a splashy, drive a convertible around town, sort of guy. The money will be used to help his nieces and nephews raise their children. 

I finally plucked up the nerve to say, "You're not going to quit, are you? I'll miss you... it won't be the same without you."  He shrugged that off very matter of factly - oh no, I'll keep playing.  I wanted to jump up on the folding table and dance.

The funniest moment came then, when I asked if he wanted a burger or hot dog, and he said "I don't know if I have any money with me."    I love him.




(I really don't want his money.  if you see only "lottery" in this story, you cynical chap, just go through some of these:



http://goingon40.blogspot.com/2009/08/it-is-hope-that-moves-us-forward.html  (the essence of my relationship with him)

http://goingon40.blogspot.com/2005/07/stars-and-stripes-forever.html  (a classic Stanley moment)

http://goingon40.blogspot.com/2012/04/hi-and-stuff.html (silly)

http://goingon40.blogspot.com/2009/01/clicked.html (  Stanley's shoes part 2)

http://goingon40.blogspot.com/2009/01/unclicked.html  (  Stanley's shoes part 1)

http://goingon40.blogspot.com/2011/08/remembering.html (this links to a video where he was interviewed about a friend of ours who was killed)

http://goingon40.blogspot.com/2011/04/so.html

http://goingon40.blogspot.com/2010/10/sunday-art.html

http://goingon40.blogspot.com/2010/07/sunday-art-traditions.html

http://goingon40.blogspot.com/2011/04/blue.html

http://goingon40.blogspot.com/2007/04/cant-quit-my-day-job-just-yet.html (oops)




Thursday, July 05, 2012

Things of Random-ness

1. My sister was here for a few days. Nothing else really mattered to me. You can see the cutest nieces ever, in my instagram feed. (Or if you are my Facebook friend, but for some strange reasons most of my FB people don't know this blog exists. )

2. We had lobster. And yes I am afraid of those effers when they thrash their tails before you DROP THEM IN BOILING WATER. TAKE THAT. Except after the first one I did, I made my sister throw them in. We also made some really great cake magic together. It was her 40th birthday (so yes I am almost 47, and I really need to change this blog title...)

3. My fridge died today. Because it knows I bought a new dishwasher last week and maybe spent too much and I had fun with all that on the twitter with poly (and her brother, right?)

4. I have recently found something really good to bond with my own brother about. He is great at analyzing a book... We both read the Hunger Games and I found a book called the Girl Who Was On Fire (essays about HG) which we have been discussing.

5. If you are on Instagram look me up.(Carlyq80) but for pete's sake if you use the blur, do it right. It should usually be a band all of the way across your photo, horizontally, because a REAL lens would be focused at a certain distance from the camera... stuff closer or farther away might blur based on the aperture setting. Learn photography basics, people.

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:


view full image

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

Thanks,
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 fallout....no 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

And....

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.

Shooting

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.

Sunday, May 27, 2012

Be right back

Super busy right now with prom and awards ceremonies and weddings and a million other special events coming up.

Had a scare last week, my mother in law fell and we needed to take her to the hospital to check things out. She had every intention of going home from ER, but I would have bet money her hip was broken. I guess she showed me... We got her home about 4 am, which made for a long, fabulous workday.

Saturday, May 19, 2012

Milestones

About a week ago I tried to explain to my daughter that yes, you are looking forward to your prom but so am I; I am your mom and it is a milestone for me too.

Most parents dream of prom dresses and wedding veils, but when those things become something you might miss out on, the realization that you made it after all becomes even sweeter.

I walked to church today; it's only a mile and I knew that First Communion parking is mayhem. (I had to sing...) It confused the hell out of my family and at least three of my friends who drove by me, to see ME, walking. Because I never, ever, walk to church. I haven't, in 22 years of marriage.

It was fine. The weather was perfect and I picked the right shoes and really why didn't I do this sooner???

I want to see my new baby nieces make their first Holy Communion. I really want to see their prom days. I don't want cancer to come back, now that I think I've won, and fuck with my plans to live to be 95 like all of my father's aunt and uncles.

So I need to get back into shape, and today I walked two miles. (And one whole mile was uphill.)

Suck it, cancer.




(in may 2010 I was finishing up chemo... I can hardly believe two years have gone by )

Sunday, May 13, 2012

A mother of a day

Today wasn't my best; I stomped and raged and struggled.

I railed at the frustration of someone changing a schedule THEY had set (and they changed it at the very last minute, with no regard to how much of a difference it could have made in our day. )

I tried so hard to visit my mother and just be nice, but other frustrations crept in and I ruined the visit and I felt guilty.

I'm also so MAD that she has a sweet new granddaughter and won't go visit. Excuses. Blah.

I cried, eating pancakes that my son made for me, because I want to go see my sister so badly. And I didn't save up for a plane ticket (in the madness of the past few months, which isn't a fail therefore, but still makes me sad...)

I went to the market which is SO not my favorite place, but my sweet daughter put up with my stomping and storming and helped me get groceries and bring them in.

Then I went out to water my garden and the hose isn't right so it spritzed me over and over and I got all covered in grass clippings and my favorite flip flops broke and... Ugh.

Then she put on Big Bang and it soothed me with funny, and after watching the wedding I went to my porch and played with my flowers until I could act like a normal human again. I drank wine and we ate steak and DIDNT get calls from the aides with drama - silence for the win!

And I tried to write bills and sort papers and do real work that people pay me for and felt like I made a dent. Sometimes, that's as high as you can jump. Barely getting off the ground That's it.

Friday, May 11, 2012

I go walkin in my sleep

It's right about the time that I finished up my chemo, two years ago.

I was mulling it over on my way to work today... out of nowhere I found myself thinking about the nights I spent alone in my room.

During a chemo week (I had a round every three weeks) my husband would sleep in my son's room, to try to give me peace and quiet. The steroids destroyed my ability to sleep through the night. Any sound at all might wake me up, and then I'd be unable to find Mr. Sandman again.

And yet... I hated being alone. I flitted between scared, lonely, bored... sometimes aching from head to toe from the Neulasta, and sometimes tossing and turning in the painful misery of what chemo did to what we'll just call my stomach.

I longed to be cuddled, even though I knew I wouldn't be able to lie still and would actually keep HIM from sleeping enough to continue to work, deal with the kids, etc (all of the things I wasn't doing).

I wanted my back rubbed and my forehead kissed and to be soothed to sleep, but didn't really know how to ask for that, because I had retreated, and assumed everyone in the house was almost afraid to touch me, in the same way you might be afraid to touch a tiny bird who has fallen out of a nest. The bird is already broken, and you don't want to hurt it more.

This was an accidental photo; I did an Ombré manicure tonight as a way to clear my mind of this week's work and elder care duties/drama / what have you and I took a photo of THAT to try to decide whether I like it. (not really, i used green tones to fade and I now appear to be ready for st Patrick's day)

But the photo in this post captures some of the same restlessness that I felt back then, all of those nights two years ago. That fleeting blurry feeling where the minutes drag but in the blink of an eye, blend into one another and suddenly rush by.

Tuesday, May 01, 2012

Cheap therapy

Stressed out? annoyed with the universe? Plant some seeds that you bought on a whim, and a few more that you actually managed foroncein20years to harvest from your own flowers in late fall, and managed to keep track of all winter, and no mice found them and ate them. Poor sentence structure aside, this made me pretty darn happy tonight.

Let's hope my black thumb takes a year off and I don't kill off all of these poor little seeds.


(and, I know... Two posts in one day? Wow)

Ready Set Go

* I am delighted to share with you that my newest niece was born this weekend, a few minutes before midnight on Saturday evening. She is  ADOR A BLE and I am once again sneaking in photoshop collage time whenever I get a new picture of her. *

Today I volunteered at my daughter's track meet; the school hasn't hosted one in a while and the track coach had asked a few parents to help.  The official, bless his heart, didn't blink when he realized he had six timers, but none of us had ever clocked a race. He very patiently proceeded to train us during the meet.

Luckily it was a VERY small meet - two schools that are small, and they didn't even always have runners from both schools in each race. (Racing against yourself really sucks, but is done all too often in smaller towns )  So we could double up and have multiple people timing each runner so that we could get a sense whether we were hitting too slow or too fast.

I screwed up the first one... I was supposed to time the 5th place runner,  but I got confused because he was neck and neck with the 4th place guy. So I stopped my watch too soon.  Gah! Luckily for me the person who was SUPPOSED to time 4th place instead timed the runner in the 4th lane... who finished fifth.  Got that? Oh, it was comedy. But fun. 

The starter was laughing at us.  Quietly, but I could tell.  I didn't argue with him; dude has a gun.


Tuesday, April 24, 2012

Where troubles melt like lemon drops

I tweeted this photo today, in the middle of a long frustrating chain of events which is unfortunately the new normal.

It seems like February third* was 100 years ago. Today I really felt like my day was not in my control at all. I got three phone calls related to my father in law's care while I was at work - all from different people. At one point I ended up in a conference room ( because I sit in a shared workspace now, designed to cram two dozen people into a minimal amount of space. Go, go ahead and google Dogbone workstations - I'll wait... ) and when the phone call was done I just wanted to put my head down on the table and cry out of fatigue and frustration.

It was bad enough that the regression test assignment I had today confused the hell out of me; people walk in and out of the new work area all day long and I'm struggling with the steady stream of distractions. I HAVE ZERO ATTENTION SPAN AS IT IS, people. I also want to kill or maim the two, like, secretaries who, like, totally sit right near my now-very-open floor plan office space and won't. Shut. Up. With their loud phony voices. Like. Really loud.

I have my sister and a few trusted people that I can turn to and say OHMYGODTHISISALL SOFRUSTRATING and so on... And I am grateful for that. And for dumb knock knock jokes and riddles and silly games on my phone that help me get mind off things. And a nifty app, ambiance, which lets me download a variety of urban background noises which somehow help me tune out some of the clatter.

BUT. I am tired of piles of clutter and chaos around my house, and disappointed that I can't seem to ever make progress on things *I* want to do, especially now. Saturday I wanted to weed my garden and after 30 minutes of hunting for gloves, I drove to the hardware store in tears. I know I have three pairs. Somewhere.... But I had to put on my big girl pants and just go buy more, and not yank my husbands chain because the garage is a disaster and I'm spending all my free time buying diapers for his parents.

Because by the grace of whatever benevolent force in the universe allowed me to dodge my OWN coffin a couple of years ago, I got lucky and now is when I pay back all that karma that I got on advance.

I knew the abundant free time I had in January was a nice break. Now I see it was the water pulling away from the shore, and the feckin' tsunami is hitting me NOW.

*february third is the day my now-88 year old father in law fell, breaking his femur in three places...

Tuesday, April 17, 2012

Why I love Dancing with the Stars

http://m.youtube.com/#/watch?desktop_uri=/watch?v=V8rhcFpx3DY&feature=player_detailpage&feature=player_detailpage&v=V8rhcFpx3DY&gl=US

If you missed Louis Van Amstel dancing with Anna Trebunskaya last night to Santana, go watch it on YouTube. THIS is how it's supposed to look.

The best part is that it's really Santana, not those hack singers that do bad covers for the competitors. (as my daughter would say, "where are YOUR prize ribbons?" but I swear I could do better....)

Monday, April 16, 2012

Monday

... Why so mean, Monday??? Some of the people I work with are very funny and delightful ... But there are OTHERS....

Saturday, April 07, 2012

Hi... and stuff

So... where was I ?

My father in law is still in the hospital. He will hopefully be coming home soon. In the meantime one of the women who help me care for my mother in law, M., is keeping plenty of baked goods supplied to my home. Chocolate chip bread. Banana bread. Blueberry. Cakes... and on and on it goes. We are all expanding. The goal was to put weight on MY MOTHER IN LAW. Not all of us. M calls to tell us she has a few breads for us, and we all sigh quietly.

This is my busy week at church; singing almost every day. Last night the priest was intoning several VERY long prayers in a row and I just. Got. So. Sleepy.  Suddenly I realized that not only was I RIGHT on the edge of falling asleep, Stanley was looking right AT ME. And he was saying "You're not falling ASLEEP are you?"  (Stanley talks to us all the time during mass, because we are upstairs behind the congregation, and they usually don't hear his Irish whisper as he reminds us how to sing a particular part of whatever we're doing next.)  So I turned bright red, and bit my lip and shook my head. No. Nope. Not falling asleep.  He laughed at me.  See if I bring him any candy. Or cookies. Or home made fudge.  (This year he asked me for maple. Early taste tests of the spoon indicate success...)

Hmmm... what else can I share with you? (I have a few loyal readers I see, I get a handful of visits every day even though I don't post as often since Harry fell. Are you reading my tweets over at the right? Do you like the photos I post? Feel free to look me up on Instagram as Carlyq80. )

We are very busy preparing for a trip to see my sister, who is having ANOTHER adorable baby for me to gush over. If the stars manage to align, she will cooperate and go into labor so that I can be with her while the baby is born (there is maybe a 5% chance of that). But it would be really awesome since she was with me when my son was born so many years ago.

I will have to be very careful if I am in the delivery room, since I am just as graceful as ever....

The other day I noticed that one of my neighbor's kids somehow lost track of a green ball that the wind had blown into the bushes in the very back of my yard. I walked back to go get it, forgetting that I was wearing shoes with a bit higher heel, which helpfully sunk into the wet grass every few seconds, since it had rained earlier.  I got to the ball, retrieved it, and was sinkwalking toward their yard when I remembered their big annoying german shepherd who chases people.  We don't get on well with those neighbors so I decided to just stop and kick the ball in the general direction of the other crap sitting around their backyard.  Unfortunately my shoes are slip ons, in addition to having heels, so OF COURSE ONE SHOE WENT FLYING. Of course. I had to walk across the wet grass a few feet to fetch it. My only consolation was that due to the angle of her house I know she wasn't watching me from her kitchen laughing.

Ah, don't you wish you could be as cool as me?   - one more story, then I have to go.

My daughter is also preparing for her prom, and discussing colleges. We need to start visits this summer. They will all be local, given the havoc that unemployment and cancer wreaked on my finances. Luckily we have some great options near us.  She told me in the car the other day that she was considering joining the Navy. I laughed for about a mile since this is a girl who takes no less than 30 minutes in the bathroom then still has to dry her hair and do her makeup just so, in her own room. I said, you are ABSOLUTELY not suited to the demanding life of a solder or a sailor.  She joked with me... "You'll see. I will do it just to prove you wrong."  I said nothing for a few moments.  Then I turned to her and shouted as loud as I possibly could, 'DROP AND GIVE ME TWENTY' and was rewarded with a scream and flailing of arms.

I rest my case.


Friday, March 09, 2012

Clicking

So... today while I was waiting in traffic I snapped a photo. I just upgraded my iPhone last week and I looooooove the camera in it. Much better. Quick and good quality. And flash too!! Back to this shot...

We had just had a brief but violent snow squall. Oh right, it's still winter. It's suppose to snow. Crap.

At any rate, this is the progression of my edits to the photo so far.

You can see my dashboard in the original photo, which makes me laugh. I have to work on the basics of framing a photo (and not cropping later) and also of actually holding my camera or phone so the horizon is level.

So I crop in photogene and sometimes rotate -- it is a quick and simple app I've had a while. They have a newer version but I'm not smart enough for Photogene2 - it does too much when all I want is some basic fixes.

Then I go into Dynamic Light, which provides HDR effect. I also add some filtering there; in this case the "Orton" which adds some blur and greenish/ blue tones, plus the vignette to darken the edges.

Then I cropped it again. I try sometimes to improve my haphazard compositon...

Lastly, I use Instagram to share photos sometimes, so I put a filter on top of everything else there. I think it might have been Hefe, but does it matter at this point?

It was fun. THAT is what matters in this case.

Sunday, February 26, 2012

Reflecting


Disney was lovely. (Photo by me, at Animal Kingdom, edited with an iPhone app... PhotoStudio). The vacation was a much needed recharging of my batteries even though while the kids were there I walked and walked and walked and walked. Oy.

Margaritas are great, hanging out with band geeks can be pretty damn fun, and the Disney people pretty much have their act together. Except, all the walking, and not enough benches. I will try to post some photos to my flickr account, but I'm overwhelmed by the number I took right now - because I took so many on the safari and during the fireworks displays.

I am back to the new routine... things aren't going to "get back to normal"; we have entered a new phase where my elderly inlaws will need more and more care until we lose them. I am trying to be selfless and yet still find balance so that I can keep the pace that I set for myself. I know how easily caregivers can 'burnout.' I am keeping track of who will be with my mother in law during the daytimes. (Fortunately we have skilled nursing care at night, so I just need to manage the days.) My children are being wonderful and supportive and stepping up to help after school. I can work from home or her home now that I installed wifi there. Nana doesn't need "care" so much as just some company, so that she is not all alone. We don't want her to fall, but other than that she knows What time it is (Flaaaaave!) and is still pretty darn nice to be around.

I find it hard to explain, but there is a sort of quiet grace that I feel when I step into her home. It's emotionally rewarding to me to take care of someone who has been nothing but a kind, sweet mother in law to me for 20+ years. I like the pace that is set by needing to be patient with her slower steps and movements... I wash her hair, help her dress, feed her, and we watch Bonanza, and even though it's SO. LOUD, I enjoy seeing Michael Landon when he was a 20 something hottie.

Tuesday, February 21, 2012

Still at Disney

To be continued, but a few comments on disney:

Ow. My feet. And I did wear the best sneakers I have. Ive got blisters on my blisters. We did all four parks and even rode the boat from hollywood to epcot. I love that useful things like the boats and buses are free.

I like the fastpass system but it should be refined so that the best rides dont "sell out" before 2 pm. I didn't get on Soarin which was one ride i really wanted. Maybe limit the number of passes that can be generated each hour???

Disney is loud and full of young children in various stages of tantrum meltdown. Im so glad my kids are grown. When they still are wearing their princess dress and have the princess makeover bun and sparkly tiara it is awesome. The toddlers... Not my kids.

I'm pretty tired and when we stayed for extra magic hours the other night I was more or less delirious trying to fall asleep. Moaning and talking in my half-sleep and waking myself up. My daughter loved it. Not.

We were pretty much in synch so it was great. We both kinda liked Everest, hated space mountain, and loved Aerosmith's rollercoaster. Plus it was fun to just walk around and hang out with her.

(My son did his thing with his friends and I'm fine with that)

Gotta run!!

Friday, February 17, 2012

Five hours

Since my plane hit ground. But ut has already erased a TON of stress.

An extra play day for mommy on the front and back of this trip was inspired genius, if I do say so myself.

(this is the main pool at coronado springs resort.... It's going to rain, but i have a margarita...)