Posts Tagged ‘metastatic’

Ann’s Diary: The Answer

I am having a huge fight with my inner child tonight.

On the one hand, I want the kid to just lighten up and let it go. I’m having a terrible moment (NOT CANCER) and I just want to not be so angry and hurt–I want to not care any more. I want to live and let live. I want to get my heart back from the place I flung it after I came to this sad place. I want to look the world in the eye and say, “okay, fine. I give. I don’t get it, but I will give.”

And then my child sits up and says, now wait a minute. I am sad and I could cry–in fact I am crying right now. Just the thought of all the hurt and the sadness around what’s going on–I can’t even bring the thoughts back from the place I’ve stuffed them tonight so that I can maybe get a non-fitful night’s sleep. But the mere lingering of my mind on it all* sends my stomach aching. What’s an inner child to do? Be a grown up, yes–but how?

*Though I blog I do not fillet my life and all its personal ups-and-downs for the masses to read about. That’s invasive and frankly boring because my life is not that interesting. But staying private and blogging for me is difficult, since what I work out in my life–my thoughts, my feelings–comes out here for me to write, read over and eventually learn from. I don’t know why it is but when I type thoughts out they’re no longer stuck inside me, threatening to make me miserable. They live out in the world with the rest of us. And with luck I–maybe you too?–learn something from them in the end.

So back to my child. She is lost in grief but damned if she’ll be lost too long–there is too much living to be had. And grief sucks. Kids shouldn’t use that kind of language but I’m a grown-up, so I can.

And maybe there’s an answer in there. I’m a grown up. If I can drive a car, put kids to bed and use salty language, I must be able to figure this out. Yes this feels awful now but tomorrow is another day. And somewhere inside me is the answer I need. I don’t know where, but it’s there.

I just have to put my inner child to bed tonight and be a big girl in the days and weeks ahead long enough so I can hang in there to find it.

Posted February 21st, 2012 by
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Ann’s Diary: Not Much

Recently I wrote a letter to the editor of the local paper and it ended up as a column.

CLOSING THE GATE ON OUR CHILDREN. by Ann Murray Paige

My child recently did not get accepted to what’s called the “GATE” program at the local public school.

GATE stands for “Gifted And Talented Education” and it’s a way for the public school to offer “higher learning” to kids who want it. What “higher learning” is I’m unclear, but it involves a lot of homework. Which is why my child didn’t want to do it anyway, and so I’m lucky that my little one didn’t get accepted.

I wasn’t sure about GATE any way, but not for that reason–in fact I like the sound of higher learning. But I don’t like how the program separates the GATE kids from the rest of the class. That’s a by-product of the program–the school literally keeps the kids in GATE away from their non-GATE peers. They don’t share Science, Computer or Library time. If they sit next to each other in the lunch room I’ve never seen it. They’re set apart–literally and figuratively from the other “typical” kids. And I think it’s that figuratively part that’s getting me down.

When something is separated from something else it’s noticeable. Take oil and water–you can see they don’t mix. You’d never put tigers and deer in the same pen. And I’d never wear heels with a mini-dress–not only am I 46 but I’d probably look like someone who’s looking for a good time, if you know what I mean.

Assumptions are awful things, of course, because they’re not well-founded and they never show up on an action plan at a school board meeting. But whomever decided that separating a class based on its ‘gifted’ and ‘talented-ness’ must have been denying their inner child–the one who didn’t get picked for kick ball in third grade. Because one of the worst things I think any child can be told at any age is that they are not gifted nor talented.

Yet I wish my child had tested into GATE–I wish I could say “in the public school system’s eye, this little person is gifted and talented” because the assumption now is…you follow me? I know that’s not what the program intends to do, but it’s a sad repercussion of the testing process–indeed of the program as a whole.

I don’t want to sound like sour grapes. I don’t want to say “get rid of GATE” just because my child didn’t make the cut– all my child’s peers seem to have gotten into the program–another stab at my motherly ego. And I know this isn’t supposed to be about my ego–but I’d be a liar if I said I wasn’t hurt, insulted, and a whole lot confused. I think my child is smart–so the public school system doesn’t?

And here people whose children tested into GATE will say, “no, it’s not that. Your child is wonderful. My Johhny just learns on a higher level.” That’s fine, I’m happy for Johhny. But what about Susie, who doesn’t test well but loves to learn? Can we label her and put her in, say, the “STAR” class? Because ‘She Tests Average Really’–but she’s a STAR just the same.

When my child found out of the denied acceptance into this ‘smart club’ there were no tears–in fact, there was joy. My kid made it clear that extra homework on nights and weekends was not my child’s idea of a good time. I was relieved at the reaction and my husband and I both gave each other the “phew” look because we sure weren’t prepared to properly handle a bruised 3rd grade ego—those can be hard to fix.

But it was the day or two after when I realized the real bruised ego was my own. I was and still am fighting a feeling of resentment, hostility and anger toward this program that based on one test labels 9 year-olds ‘gifted’ and ‘not-gifted.’ Whose idea was this anyway?

Don’t get me wrong–if there are children who need more in a class, if they learn on a different level, I want them to get what they need. In fact I hope they do.

I just wish is wasn’t on the back of my child and all the other kids who, for some reason that may have nothing to do with being “gifted” or “talented”, didn’t make the cut on a divisive and polarizing program like GATE.

Now I have to tell you that I wrote this for me; because I was feeling bad about my child not being accepted. I wasn’t feeling like I wanted the program ripped to shreds, or pulled off the agenda. My feelings weren’t that evolved. I was feeling what I and too many parents I’d spoken to were feeling; that this program was an “us vs. them” program that was polarizing the as-yet-formed 4th grade class of 2012-13.

And because I love this country and the First Amendment Right to Free Speech, I wrote a letter to the editor of the newspaper. And 31 comments later I now realize I have stepped into a firestorm of opinion that will not be changed or moved by my letter–only irritated and agitated by it.

What these people who read my ‘column’ and feel strongly about it can not understand is that the issue–this GATE program–is interesting to me, but not my world. Anyone who reads this blog or follows me on Facebook knows that I (sadly) have far too many pressing, poignant and heartfelt fears addressing my world on a day to day basis, so that anything else–like an education program, while important and worthy of review if not fully satisfactory to the taxpayers funding it–will never stick in my viewfinder as a day-by-day energy taker. And by the letters I’ve already read, there’s a lot of energy devoted to this issue–somewhere between ‘so much’ and ‘too much’ if you ask me.

And I don’t have the luxury of sending my energy that way. Larger, more pressing matters await me: my children not having a mother at 16; my husband marrying another woman to mother my children when I am gone; that $#%@@ 401K I put so much effort into padding may not be spent by me, but by some other person–someone I don’t even know. The home we haven’t yet bought but hope to find this year, that I may never be able to live in.

These are the issues–along with the milk that we’re out of, the hot lunch check I need to write, that GAP bill that’s overdue and those friendships of mine that need tending now that reality has hit for some of my pals that being friends with a sick woman may take more stamina than some of them have or are willing to give–that are pressing to me.

Believe me, the local educational system is important, yes. But if I’m not here in 5 years to find out how it all turns out, how much time can I let it take up in my life past today? Too much? So much?

The answer for me is: not much.

Posted February 20th, 2012
Posted in: Ann's Diary

Ann’s Diary: Airport Undressing

This has nothing to do with breast cancer, but wouldn’t it be nice if I didn’t have to undress in the airport?

Maybe it does have to do with breast cancer, as I hate walking through those new machines where I put my hands up and get doused with some kind of something that sees if I have scary objects under my shirt and pants. As a woman who’s been drenched in radiation so much these last 8 years I could sweat it out on a hot day, I’m all for pre-arranged clearance that I am not, in fact, a crazy person trying to take down the plane.

Who knows how this will all shake down, but if we put a man on the moon and have landed on mars, I’m a believer that we can figure out a way to stop millions of people traveling on airplanes in the US and around the world to keep their smelly feet under wraps as we head to the area marked “passengers only.”

If they actually ever post a sign that says “Keep Your Clothes On” with an arrow pointed in a certain direction, I’d like my smelly feet to be the first ones in that line.

Posted February 9th, 2012
Posted in: Ann's Diary

Ann’s Diary: Fiji Water Forever

It happened again…

for some reason when I drink Fiji Water before an IV blood draw, an infusion, a PETSCAN or any other reason that someone has to shoot me with a needle to find a vein–and those are the only reasons–the nurse, phlebotomist and tech get my veins on the first try. You must understand that I have horrible veins: I mean they’re legendary in the chemo room as duds, and the time before last someone mentioned the word “port”–a permanent fixture that allows future draws to happen because the insert-thing is already there. (It requires a small procedure and a surgeon, and frankly I don’t want to have to be at a point in my cancer journey where I need one.)

Today was no exception: the nurse called for reinforcements. The infusion center was running on fumes as many workers weren’t there. The only nurse on duty was intimidated by my veins–I call myself the “problem child of the Infusion Center” and whenever I come in, those with RN next to their names run for the hills. The one nurse who manages to hang in there as she must poke my arm 3, 4 and 5 times wasn’t in, and the other wasn’t up for the pin cushion challenge. So, she had to wait for another RN who was running late to come to work, AND had to watch the clock until the ultrasound machine was available. That’s the machine that looks into your body and sees things–like babies growing, weird lumps and in my case, floss-like veins that don’t spout blood when you need them to.

I won’t belabor the issue–I drank my Fiji water last night and today and when the chosen nurse came to attempt the impossible, BLAM she got the vein!

But the best part is that I was panicked, because there was an hour delay in doing the draw due to a staff shortage, and I drank my Fiji bottle dry. I started to tense up, thinking the Fiji would lose its power as the minutes tocked by, and I was going to get poked and prodded til forever…

but it didn’t! And I wasn’t! And I’m so excited!

Someone asked me if I told the nurses about the Fiji magic. I said no, because these last few times when I’ve had the water and my veins opened up I’ve mentioned it in passing and people give me that “whatever gets you through the night” look–as if they become acutely aware that the woman they knew and respected as an author, filmmaker, journalist and breast cancer activist might actually be a freak weirdo.

But this Fiji water is slowly becoming my new best friend. And since many of you reading this blog may find yourselves in my same bad-vein-boat, I encourage you to break your piggy bank and dole out the 5 or so dollars it takes to drink a bottle of this stuff the day of your draw–and no I am not being paid by Fiji to say this. Stay hydrated with regular water but about an hour before your draw–and the night before–slug down at least 16 oz each time–and bring extra that day in case they get delayed…

..then let me know if I’m the only lucky freak weirdo for whom this works.

Posted February 7th, 2012 by
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Ann’s Diary: Plan Komen

I was asked this morning about my take on the Komen situation: i.e. its reversal of decision to not give Planned Parenthood grants for breast health to its population of women in need.

In the last two days I’ve read a lot of angry commentary from the people who hated the original decision. I saw many lines that ended with “Komen will not get any of my money anymore.” To me, that line of thinking is as upsetting as Komen’s original decision.

Don’t get me wrong: I am glad Komen changed its mind. I am happy it heard the angry outcries. I am glad it decided it made a mistake. But I don’t like any conversation, conflict or combat that ends with “and now I hate you.” I don’t think quick decisions and pulling support for a 30 year organization over one poor decision advances anything positive. And I am all about positive.

Which I think officially makes me a milk toast. And my perspective could be dead wrong; maybe fighting and financial fist-a-cuffs is how any thing good gets done in this world.

But as I battle metastatic breast cancer, I have become more even-tempered. I am hyper-focused on solving problems, not battling them out. And like I just said, I’m not at all sure I’m right. So hooray that Komen changed its mind and kudos to all your reactions that helped it get there.

But I stand by my original reaction, which was this: maybe Komen should go find another way to help out the population that Planned Parenthood addresses. Remember, not all people who go to Planned Parenthood are asking for abortions. I have a friend who goes there because she can’t afford health insurance but wants to stay healthy for herself and her 12 year old son. There’s a broader non-politically-charged population there–and it needs breast care help. And that is the mantra of Susan G. Komen For The Cure: stopping women from dying of breast cancer.

I guess what I’m saying is maybe there’s a place for both reactions: the “screw you I’m taking my money and walking” one and the “okay, if you can’t help one way, figure out another way to help.”

To that end, here’s an idea: maybe Planned Parenthood–and what it does to help a large group of women who find themselves without healthcare insurance but in need of health care–shouldn’t be the only game in town. Maybe the world shouldn’t be considering financially challenged women and ones-who-want abortions as the same focus group. After all, my friend doesn’t go to PP for an abortion. She goes to maintain herself as a healthy parent.

I have no idea what the real reasons were that caused Komen to pull, then reinstated its PP funding–I assume it was political, and twas ever thus. But today, Komen is once again giving money to Planned Parenthood as it aways “planned” to do. Which I am happy about for many women, including my friend. But since “plan” keeps coming up in this conversation, how about Komen plan to figure out how to take its money and give breast health to women in need on its own?

How about Komen side-stepping this entire problem in the future by teflon-coating itself against political pressure forever? How about a new wing of Komen called something like–and I’m making this up here– “Planned Parent”? Or better yet, “Planned Prime-Of-Life”? With the objective of reaching the underprivileged women out there who don’t want an abortion but who want not to die of breast cancer? With the secondary strategy to live to see a child graduate high school, and the third objective to live long enough to be a parent in the first place?

Since we’re talking about plans in the first place, how about that for a plan, Komen?

Posted February 4th, 2012 by
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Posted in: Ann's Diary