Well, I knew I was different...

Today I went for the results of my genetic testing. Good times. Insomnia and angst. Worrying about what I will do if I do have the mutation (and a greater chance of having ovarian/ uterine cancer).

Given my holiday track record (see: diagnosis of cancer two days before Christmas eve), when I had to wait out the thanksgiving holiday to get the test results I couldn't help but assume that I do in fact have that stupid gene mutation. It was starting to feel Deja vu to me... Going for tests alone, because I didn't want to ask someone to give up free time at such a busy point in the year, to accompany me.

Time dragged on and I found myself FINALLY waiting outside the doctor's office this morning. Sweating, and trying to unwind that familiar knot in my stomach.

I went in and waited a while amidst other patients. It was humbling; it always is. I always feel particularly guilty when I see an older person and wonder how badly chemo is kicking THEIR ass. Somehow I feel bad for getting through with a minimum of chaos along the way.

Finally someone brought me in the back to a conference room. I waited and waited some more and thought I might have to go find that folder myself before I I lost my mind.

At last the doctor appeared at the door - and pointed at me, said "I'll be right in," and LEFT AGAIN. She had the papers in her hand. Sweet monkey.

When she FINALLY came back a few minutes later it wasn't with Irish step dancing and "it's all good news" so I got very discouraged. But then she said "well, I don't have bad news, but we have things to discuss."

She explained to me that the lab didn't find the brca-1 mutation that is common in families with clusters of breast cancers. Or the brca-2 mutation. There was, however, an inconclusive finding of some other sort of mutation.

So it was "um, that's good news mostly, right?". And it is. I don't need to have a difficult, frightening conversation with my daughter now about whether she has a mutation known to correlate with breast cancer. She doesn't need to be tested.

But as for a final answer on what the other part means? No dice.

Somewhere out in the universe is someone else (ONE person in all of the people who have had genetic testing processed at the same lab) who has this same inconclusive other mutation, and so for now the two of us need to chill and hope that it doesn't turn up in other people and get linked down the road as a common factor in people who have some type of cancer.

So I guess I'm one in thousands, if not one in a million.

Insomnia

I should be sleeping. I wish I COULD be sleeping.

I do not think I have slept through the night more than a couple of times in the past year, for various reasons. Pain, steroids, and hot flashes - which apparently will continue forever. It sucks!

Not only do I feel very alone, it's frustrating to be tired, so very tired. And WANT to be sleeping. Not worrying about tests and bills and random things like car inspections going wrong costing me well over $500.

Thanks for the ride, 2010. I will be happy to turn the page to January.

By the way

I really can spell Tim Holtz. It's my iPhone that can't quite manage.

It's one of those days....

Sunday art

Things I am excited about...

Tim Holt's 12 tags of Christmas... If you like creating art projects with rubber stamps then I'm guessing you know who Tim is. It's that time of year again - can't wait to see the new tags every day and to try to win one of the daily prizes.

I will be taking another online photo class starting this week. Daily assignments = taking pictures daily which makes me happier all around the edges. See
http://www.bigpictureclasses.com/blog/ for more details about "picture the holidays".

I have TWO chances to win a very sweeeeet camera and could find out today or tomorrow. Fingers crossed!

A second helping of normal

It's been a wonderful couple of days. (what, Carly? You just complained about your entire day.)

It was calm and beautiful to be with my family and eat and eat a glorious plate of food without thinking about chemo and the various medicines I took to get through it. It was sweet bliss to just sit down after the meal and take a nap like your average American.

I could have done without the bra though. Those fuckers still hurt. Before I even left my mom's to go to my brother in law's I was in the bathroom trying to take it off without just taking off my dress (like any person with any common sense at all would do).

It was fun to gather with family and just be crazy Aunt Char again. (Somewhere there is a picture of me, one holiday I laid down on the floor and all three of the kids, mine plus my nephew, piled on top of me, in some sort of a crazy sandwich.)

Well, now I have a younger niece and nephew plus my nephew's stepbrother has a young child so I am an Aunt again and also a great Aunt. And I am a great, fabulous Aunt. My many services provided yesterday included a running commentary on Charlie Brown (look at Snoopy dog making popcorn!), letting the kids run my iphone battery down completely (all those games I buy like Spin Art go over pretty well with the five and under crowd) and even helping with Mandy's poopy pants (why do people rush to get their kids out of pullups? It's like some sort of pissing contest, if you will pardon the pun. )

I capped off my services by wrangling a three year old into showing me her Beauuuuutiful pjs... (oh my! Please put them on for me...) and reading Goodnight Moon three times, in a progressively flatter monotone... Hushhhhhhh.

I can't wait to be an Auntie again, and lucky for me, around May I will be.

Today I ran all of my stupid, redon-culous errands without needing to sit down to breathe and try to catch my strength. I'm gonna show Santa who's boss, and come Christmas day I have three new kids to pile on top of me. I think I'll put the two pictures side by side in one frame.

So

Given my previous post, it's a good night for this bottle of wine, right?

Three strikes - I'm out

SO, (like my photo taken yesterday?)

I'm kind of baffled how my day is going today.

I slept in - awesome. Then things have been on and off the rails ever since.

I edited photos and ordered my Christmas cards from Snapfish - yeah! I also ordered a canvas print of a picture I took at Cape Cod and converted to pastel. Hmmm. Wait. I didn't get the 25% off and free shipping credit that I should have. (They sent out an email last week, and then a correction saying "No, really, it's working now". Which is the only reason I noticed that it isn't. I emailed customer support and got back a credit of $6.14 and I think it should have been way more, but I'm so confused at this point I'll walk away. Primarily because the customer service emails are coming from people who are clearly in INDIA. Strike one.)

I went to get some Chamilla beads for my daughter because the little jewelry store I go to sent me a postcard with "buy three, get one free on black Friday." The woman who helped me had obviously NEVER TOUCHED those beads before. She had no idea which ones were which (the glass ones were on thin metal rods that set in a wooden frame. The whole thing looks like an abacus. There are pictures that are "sort of" behind the beads. But since the beads can slide all over the place it's kind of weird and hard to tell which bead is which, if you have no brain and can't tell a pink one from a blue one. )

So I picked out two I liked and she wrote that down (on a piece of lined school paper like my 8th grader uses for homework... wtf? ) and then she wrote down the two that need to be ordered (a gingerbread man and snowflake). She went in the back to talk to someone about how to order them for me. She addressed him by name and I figured out it was the owner's son, because he has his dad's name and that's the name of the store. So he asked her for the other two beads. She came out, looked at me, asked "where did the beads go?" and I looked at her, not understanding what she said, and she took the piece of paper and walked away. I then heard him say to her "If you leave them on the counter people will take them." Dude. You did not just accuse me of shoplifting. (One I don't steal stuff and two, walked in with a postcard with my name and address on it.... hello!!)

She came back out and asked the clerk helping the person next to me if that clerk had seen the beads and I said to her "You never took them off the rods." I was about to follow with "and if you'd like to search my purse you just go right ahead" but I bit my tongue. She said "Ohhhh" in a really confused voice and said "are you upset? I apologize."

I should mention this was not some 18 year old who I could forgive for flaking a little on Black Friday. She was about my Mom's age. So of course I still have to forgive her, but wait! the story isn't over yet.

I handed over my credit card and she took it back to him; he tried to charge me for All. Four. Beads. I said "That's not right. It should be $35 + $35 + 27 and that's not $134." Fcker... her response was "Ohhh", again.

Now, anywhere you go they usually run your card and hand it back to you with your copy of the receipt, and then also hand you the piece you need to sign at the same time. She handed me two pieces of paper. No card.

I said "I need my card back please." and from the back I heard him say "I need that slip signed." Unfucking believeable, and strike two.

When I get my beads, I will be explaining to his mother, who still runs the store but was nowhere to be seen, exactly WHY they will never see me again. I just want what I went there to purchase.

To cap off my day, I got my car inspected and It! Failed! I need four new tires!!! But when I get them I can go back to the same place and they will reinspect my car for free! I win??

Yeah, I know. I'm out.

The envelope, please

My test results are in... But I can't have them.

The doctor who does genetic testing is only in the office on Tuesday and Thursday.

She has already explained to me that they ALWAYS make patients come in to discuss the results.

I watched her draw my family tree. MY family. Circles for each female, and squares. Neatly filled in for those who are gone, their cause of death noted carefully underneath.

The simple tube of blood, shipped away - Jersey? I can't remember. I will know when I get the bill, which could apparently be hundreds of dollars. I can't wait for THAT envelope either. Not.

But I am trying very hard to convince myself that I will NOT have another December holiday where tests and results drown out laughter and celebrations.

News is just news, and it's just a piece of paper in a folder on someone's desk but it's hard for me not to tilt my head and listen for a ticking sound.

Sunday art

I recently got a new pc and I FINALLY have photoshop (cue fireworks...) --I have already used it to edit out the closed eyes of one of my children (from a group photo of five cousins plus Nana and Papa).

This is a photo I took near the start of the Erie Canal; I pass these every morning on my way to work. I didn't have a camera or time to stop the morning the mist and fog swirled around them, but yesterday the sun made a pretty nice mirror out of the canal.

Happy

So, I remembered I have a blog today. Oops, sorry.

I feel more like me again. I was just reading my posts for January and feeling SO THANKFUL to be here in November.

I have a hairdo again. I won't go on and on about it. But yesterday in the ladies room I saw the lady who comforted me the day it was 90* and I didn't wear my wig at work (I wore my favorite dragonfly bandanna) and she loved my hair, which is a nice shade of ash blonde now and has a shape sweetly unlike a helmet of hair all equal in length.

I took my daughter to the mall for a manicure today and saw my assistant guardian angel. (You can read my original post about her at
http://goingon40.blogspot.com/2009/12/fine-spiculated-mess.html - in my memory banks, her index name is Happy.)

It was very busy there today so Ty, who I thought was just a manager, did my nails and Oy, he really does a brisk leg massage. Ow. Stop punching my legs dude! On second thought, he really loosened up the foot I have flirting with plantar fasciitis.

While he was doing my hand massage, I closed my eyes for a minute and relaxed. Happy came over an said "He bad man" in a playful tone to me... So then I laughed and he said "is good, right ? good, she loco" and then I had to say "do you remember me? I met you in December, the day I found out I had cancer" and she did... I saw recognition pass over her face... She began talking about power, and strong, and said my hair came back so good, so I really do think she remembers and understands, even though my ability to speak Vietnamese really sucks.

So yeah, I hugged her. Because I am at peace with being Dorky, and that one little encouragement of "happy happy - fight!" meant so much to me. And my daughter's reaction "is that her??" was not unlike what you would hope for when pointing out someone who threw you a life preserver when you needed it most.

Hoop there it is

I got some exciting news yesterday.

My college roommate walked with me at our local Susan B Komen run /walk last month. Her mom is also a breast cancer survivor and walked with us.

They are affiliated with a local group that provides a number of programs for women diagnosed with breast cancer. One event is an awareness night at women's basketball game for Siena, a local college that runs a very popular basketball program around here.

From what I understand I am one of a group of women who will be honored at this year's event, and I get escorted out onto the middle of the arena floor during halftime or before the game or by a team member or something equally fun. And prizes! I love prizes. Apparently there are goodie baskets, but I'd be happy with even just the awesomeness of standing in the center of a basketball court and having an arena full of people cheering for us.

Exciting and definitely something to look forward to -

Let's just hope I don't trip walking out onto the court!

Apple

Today I get my new bedroom rug... The one I originally picked to match the paint I originally picked...

This of course means that my bedroom had to be emptied AGAIN last night. As in, while I was also committed to babysitting my niece and nephew. Ooopsie.

So after listening to "knock knock....apple!" about 500 times (really, that's the whole joke, he is three), giving them extra cookies even though they didn't even come close to cleaning their plates, and letting them play Cut the Rope and CakeDoodle, we sang christmas carols and I got them sound asleep by 8:15; I then slipped out of the house quietly. (Kidding, but only about that very last piece. I did actually wait for their parents. )

I came home and emptied my closet. Because to carpet wall to wall they have to be able to lift the wire 'california' shelving... Literally every room in the house has some of my clothes plopped somewhere, between getting dressers out if the way and just things already stashed in the kids' closets (like black tie dresses from long ago...)

This is making me very twitchy. Where to start? How much to get rid of? Do I chuck stuff that's still a size or two small or hope that the running gets me there, when it might only keep me at the weight I am now? Pointless debate unless your entire trousseau is on YOUR couch.

We won't talk about the fact that I had intended to buy a new bedroom set but haven't managed to go find one yet.. Because then I would have to talk about emptying most of the room again and I might have to lie down on my new rug, or lay down, I don't even know, and sob.

Knock knock ...(see post title)

The dragon in the cave

With apologies to the fairytales of my grandfather's grandfather....

I am scheduled to go for genetic testing this week to see if I have issues with mutated genes that go by the lovely monikers of BRCA1 and 2. Let's call them The Dragons.

This fair maiden has been feeling rather lost in the woods. First a hunter stabbed her, and then she had to eat four poisoned apples. Then I -well, SHE- felt the heat of a large fire. It burned and burned, for weeks.

The woods have now been quiet for three months. New signs of life have appeared. Eyelashes have grown back and my nails no longer have ridged rings like tree trunks, one for each poisoned apple.

NOW they tell me that there may be dragons in the woods. I'd heard the legends, of course, but forgot them in the midst of the apples and the fires.

If I have these gene mutations I get to worry not only about more breast cancer but also ovarian cancer... Not just for me but also for my daughter and sister... I don't really understand all of this yet. My oncologist talked to me about making the appointment a week or two ago and I set one up for this week. I haven't watched the informational video yet, but I will need to do that soon.

Some people don't want to be tested. I imagine they know there might be a dragon in the cave, but they'd rather not find out. They will just walk quietly past the entrance to the cave, and hope that nothing lurks therein.

I am not quiet, and if the dragon is there, it's there, and might wander out of the cave at any time to try to take a bite out of me. So I will need to aim my flashlight right into each and every cave and see if a pair of smoke- irritated eyes should happen to glow back at me.

If so, I will call upon my faithful knights to watch over me, and slay the dragon if he dares to try to sprinkle me with salt.

But wouldn't it be nice to find out that the cave is empty?

Oh and by the way...

The picture in my previous post might make more sense if you've seen this one...

A short note I can't send

Dear grouchy lady at my lunch table,

Chill. Out.

I know you had breast cancer two years ago and you are on tamoxifen now, but please shaddap. Because all you do is predict gloom and that my hotflashes will get worse (they're getting better now that I'm running more) and that I will gain weight (see previous comment).

You are the one who told me during chemo "oh wait till you have radiation..." and I didn't appreciate the ominous tone then, either. By the way? Radiation is easier than chemo.

I have only been on it three months but my doctor says so far so good, and I'm hoping it stays this way.

I realize you might be having a harder time with it a because you're ten years older than me. So... I guess my point is that I'm writing this note because I don't want to tell you to shaddap for reals. (But please shut up. Like that song Baby danced to on DWTS this week. shutup shutup shutup!)

Have a nice weekend! See you Monday (big grin).

C vs C

Last night I went to a Coaches vs. Cancer fundraiser. It was great food, a few old friends. I amused myself by chatting with an old friend for ten minutes and not mentioning at all that I have been treated for cancer this year. Mostly I found it amusing that people just can't tell anymore when they meet me, that something was up medically for me. Wait until HE gets the Christmas letter. I'm sure I will get a call from his wife.

The Shell family was honored with the Fighting Spirit Award .... the dad is a local coach, and had a lot of support from other area coaches when HE had cancer, and their son Jake has just recently had cancer as well and just got a sweeeeet treehouse from Make a Wish.

You can read about Jake's treehouse here or you can read about his wonderful Mom here .

Matt (the dad) gave a speech and talked about a coach and mentor of his who has died within the past week. He also talked about his own cancer battle and his son's. One other idea that he mentioned was a quote and a philosophy that boils down to "Enjoy the sunshine."

I did just that yesterday. I squeezed in a brief run after work / before going to the benefit. It made us a few minutes late but it was more or less a cocktail hour -- I had some chinese food, dumplings and ribs and so on, and 3 or four amazeballs creampuffs. Yum. Healthy dinner, I know. But back to the run (I am rambling this morning and NEED TO GET TO WORK.... sigh) I was cold, and the new level of couch to 5k I am at is HARD, because this girl can still not run for 3 minutes straight, especially up the hilly streets in my 'hood, but really enjoyed it anyway, because there was definitely sunshine.

Your mileage may vary

Where I went today....

Up the road to work, NOT stopping to take a picture of the mist swirling around the canal gates. Already too late for work. Dammit, Janet.

Stopping at Dunkin for a bagel. Honestly guys. Starbucks never fucks up my tea - and I get a vanilla chai latte there. I'm still trying for "large hot tea, sweetened". I have been given coffee, tea with cream, and other nonsense... as well as the wrong kind of bagel, cream cheese instead of egg and cheese... WTF ? Listen and pay attention.

Lunch break - bank A, post office, gift store (needed a gift certificate for an event we are going to this sunday, but got myself some goodies for my birthday... Spent extra so that Mr will take the hint next year to do his OWN shopping...purse, pandora beads, candy....) another bank, got lunch, and made it back to work in 65 minutes.

Then after work down to Macy's looking for a $20 coat from their ad which all the clerks denied existed, so I chalked it up to chemo brain. Went to Sephora to collect a little promo birthday gift and of COURSE some cute nail polish (dear Essie, you make better products.... I only buy Sephora because it's RIGHT THERE).

Looked in bookstore, no fun without anyone to discuss books with, also could not find a certain book I was looking for. (LOST encyclopedia)

Went to another mall to look at jc penny for mystery coat because B thought maybe it was there. Again with the rude clerks saying "a coat for $20? No" (found ad at home later. It was Macy's, bitches. But I got a nicer coat at penney's. )

Beat feet on home, we had to go ove.r to a (Giffey's )chicken BBQ at church No sauce? WTF number two for the day; and on the way home I voted. HATE ny's new paper ballots, WTF number 3.

Then I remembered I had to go over to copy 250 wreath order forms and even more lunch menus and stuff teacher mailboxes. Back out the door I went.

Sadly I did not remember to spend an hour on something I brought home from work. Rut roh.

I am tired. I have not done this much in one day in literally about a year. Hopefully I will sleep through the night, which is another thing I haven't done in a long long time.

Adios.