Pay It Forward. Childhood Cancer. By Small Things We Can Do Great Things.

There's been a bit of talk about cancer on this blog.  It seems that cancer is so prevalent in so many forms...

As you know I've been struggling with getting the test done for the brca gene (breast cancer gene), not because I'm afraid of breast cancer, but because this gene also causes ovarian cancer.  Ovarian cancer which, as my doctor told me, once it's found, means it's too far advanced to do anything about it.  (here and here).

A recap: My mom had breast cancer when she was 38.  The fact that she had it at a young age was a red flag to my doctor as an indication of this gene.  My mom was adopted and we have no medical history past here so there was no way for me to see if there was a pattern of red flags in other generations.

My doctor filled out the paperwork and  hoped that my insurance would help cover the $3,000 test.  The first time they didn't.  Time passed, I got a new job which meant new insurance, so we tried it again.  I mailed my spit (here) and hoped for better luck.  And we got it.  My insurance called and said they would help cover it.

I waited for two weeks for a call from my doctor with the results.  It's amazing how heavy something like this will sit in the back of your mind.  I'm not going to lie, I was preparing myself mentally for surgery and having to deal with the downsides of a full hysterectomy (no saving ovaries for hormones on something like this).  I didn't tell too many people about it, just a few family members.  And even then I never talked about how heavy it felt to me, except once or twice to The Man.  My last C-section had taken an hour and a half and had been difficult for my doctor.  I have a lot of scar tissue inside of me from having C-sections (apparently I have babies who didn't get the memo that they needed to turn upside down.  Breech babies equals C-sections) and it made my last delivery hard.  My doctor ended with a heavy exhale of breath, "I think it's a really good idea if you don't have anymore babies."

In my mind, I foresaw all of that to be a possible complication in a hysterectomy so as I waited for news of the test results all of this sat in my chest.

Turns out the test was negative and I, in fact, do not have the brca gene.

The relief was almost tangible.

Not only are thoughts about myself dealing with it gone, but thoughts of my girls having to deal with it are also gone.

Life will continue on with only normal chances of getting cancer, as opposed to a 90% chance of getting it.

I'll take the normal odds over that any day.

So speaking of cancer, sometimes around here we also talk about childhood cancer.

Why?

I don't know.

Except for the fact that that issue really tugs at my heart stings.

If childhood cancer tugs at your heart strings too, I have a couple of really easy ways for you to reach out to some children who are bearing bigger burdens than we, as adults, ever have.

Spit. Chocolate Caramel Bundt Cake. Fire in the Oven.

This weekend I had to admit to the employee at the Fed Ex store that I was shipping spit.

Our oven caught fire.  Except not fire, fire.  More... welding wand fire like a sparkler.

And I made a pretty good chocolate caramel bundt cake and I'm going to share the recipe because it's too good to keep to myself.

Oh, and I studied for my midterm which is today.

Biology is going to be the death of me.

Speaking of biology. I have history of breast cancer in my family.  There's a post on it here, but even better a very recent post here that I just did for my English class.  They explain the history of this but it's a concern for my doctor that I might have the breast cancer gene (brca gene) based on the fact that my mom had breast cancer at the young age of 38.  I guess that's a red flag for it.

We've been trying to convince my insurance to cover the test for the gene since without insurance it's a lovely $3,000.  But my insurance denied the request claiming they needed two generations of evidence of the gene where we only had one.  

The catch is that my mom is adopted so we really have no way of knowing about that second generation.  

Our concern isn't breast cancer so much as it is ovarian cancer.  I guess, according to my doctor, that once ovarian cancer is far along enough to detect, it's too late to do much of anything about it.

So I would like to know one way or the other.  Because if it turns out that I do have this gene, we can just do some preventative surgery to remove my ovaries and not worry about  it.  I'm done having kids anyway.

With my new job I have new insurance so we're trying it again.  

Normally my doctor, who is amazing, would have just sent the test off for me, but it's a matter of spitting into a tube and I, not anticipating that before I went to my appointment, had gum in my mouth.  So he sent everything home with me to do myself.

Saturday morning, a whole week later, I finally brought myself to pull that test kit out.  It came with a small bottle of mouthwash.  Fill the little cup full of mouthwash, swish for 30 seconds, and spit the whole lot of it into the specimen tube.  Twice.

Seal it up in all sorts of different levels of plastic, slap the mailing label on it, and drop it off at your nearest Fed Ex store.  

Except Fed Ex, seeing that it was a medical specimen package, wanted to know, in front of everyone else who was milling around the counter, what was in it?

"We can't always handle these.  You might have to drop it in the box.  What's in it?"  He asks, as he's holding it in the air.  Obviously worried about "not handling it" as he has it in his hand at eye level, peering at it.

All eyes are on me.

"Spit," I announced loudly.  I guess if you can't crawl under a rug you may as well just own it.  Yes, thank you for asking, I am indeed mailing spit.

At least I didn't pee all over it I suppose.

And just for the record, they're allowed to handle spit so it's all good.  

We had a pretty fun get together on Saturday with a few friends and my sister McKell and her man, Scott, who just so happened to be having a birthday so at their request, I made this cake:

I was going to post the recipe but I think I might wait and do that tomorrow since I just had a lovely introduction that included talk about spit.

Tomorrow I'll post the recipe for this cake, caramel and all.

And pictures of what it looks like with 43 candles on it.  Happy birthday Scott. :)

To finish the weekend off our oven caught on fire.

Sort of.  It wasn't the up in flames everyone out of the house type of fire.  It was more of a welding rod, looks like a sparkler type of fire.

Excuse the mess on the bottom of my oven.  Of all the things I take on in my life, cleaning the oven is obviously not one of them.

I might lose good mother/wife points for this, but that's a sacrifice I'm willing to make right now.  

Brynn wanted to make brownies.  Mom (that's me) was buried in studying for her midterm and dinner was leftover lasagna.  Heat it up when you're ready for it. A far cry from our usual level of Sunday dinner expectations so Brynn decided, if nothing else, they were having hot brownies for dessert.

(Not that anyone was actually complaining about it.  My family has been crazy supportive of my having to do homework and studying.)

She mixed it up and poured the batter into a 9x13 and put it into the pre-heated oven.  A minute later the girls start calling out in panicked shouts, "Mom! The oven is... lighting up!"

So I check it out.  Sure enough.

"Hey babe?  There's something going on with the element."

It was cracked and sparking and even though the oven had been turned off, the sparking wouldn't stop.  This wasn't something either of us had ever encountered before and we didn't know what to do.  West tried to douse it out with a wet paper towel.  

That didn't work.

After several more failed attempts to douse out the sparks, West thought if he cut it we could just pull the burning piece out.  But cutting it made it burn at the new broken end, even worse than it had been.  

I'm not going to lie, we were panicking.  He starts telling me to call 9-1-1 because he can't get it to stop and in that instant he yanks the stove away from the wall and unplugs it to throw the whole appliance out into the yard to avoid starting our house on fire.

And with that it went out.

So.

If the element ever breaks and starts sparking on you, just hit the breaker.  I kind of feel silly about how frantic we felt about the whole situation but I guess if it's not something you've ever seen before and you can't get it to stop after five minutes of effort and suddenly it gets worse...  I suppose we were validated. But now I'm sharing the information.

It's normal.  And it still feeds off the electricity even if it's not on.

Luckily we don't have to buy a whole new oven, just a new element.  I can handle that.

Awareness, A Cause, Moral Support

The Circus was on one this morning.

Like, more than usual on one.

Like walking around and calling each other "sibling" instead of using names.

I might have been on one too because when I did Casidee's hair for crazy hair day I swooped her bangs up and asked her if I could safety pin them.

I'm surprised any of us made it out of the house with our pants on.  Or with matching shoes.

Today I have a special guest blogger that would like to introduce you to a subject that is near and dear to her heart.  Every now and then I post things about cancer, whether it be that I have parents who have fought various types of cancer and won, or that I'm fighting the need to be tested for the breast cancer gene but the test is so insanely expensive and not covered by insurance (hello, preventative), or about various causes to raise money for childhood cancer, or about Tayler's desire to raise money for cancer.  That's a tear jerker, that one.  You can read it here.

I'd like to introduce you to Heather.  I don't know what it is about hearing stories of cancer, and realizing how many, many different types there are, but when Heather reached out to me, to introduce me to her story and her cause, I just knew I had to let her tell us all about it.

I wonder if someday I'm going to need help from others of my own, and so I feel such a need to help where I can.

I hope you'll take a minute to read Heather's story that she wrote for us here, and then go check out her blog HERE.  Also her husband's blog HERE has a different perspective that I loved reading.   Because when it comes down to it, we all need each other.  Even if it's just moral support.

I am 43 and a mother to a quirky little 7 year old, Lily. She is my only child, and my whole world. When Lily was just 3 1/2 months old, I was diagnosed with Mesothelioma; a type of cancer that kills 90-95% of those who have it. As I’m sure you can imagine, the first thing that came to mind when I was diagnosed was my baby girl and how I wasn’t going to be able to watch her grow up. After intense treatment and recovery, I'm still here almost 7 years later and cancer free!  My journey with cancer was a terrifying one and I'd like to turn my pain into purpose and become someone that other people can look to for guidance, inspiration, and hope in situations like my own. 

I'm trying to raise awareness of this horrible, little known cancer that is such a deadly killer (and sadly, 100% preventable).



  My Story: Mesothelioma at 36

The three words nobody wants to hear are you have cancer."

Yet, there it was, coming at me during what otherwise was the best time of my life.  I had just become a mother 3 1/2 months earlier.  A doctor gave me the diagnosis.  I had malignant pleural mesothelioma, which is an asbestos exposure-related form of cancer.  What has shocked people the most when I tell them about my diagnosis is that not only has asbestos not been banned, but that I got this disease from secondary exposure.

When I was a little girl my father worked construction.  Apparently, asbestos was in the drywall and other materials he worked with doing drywall taping, mudding and sanding.  He wasn't aware of it at the time, but millions of microscopic asbestos fibers were in the dust that covered his clothes and jacket that he wore home.  They even fell into the car he drove.

I was 36 years old when I was diagnosed.  It was rare at the time to find someone so young with malignant pleural mesothelioma because this disease was at first associated with older men who spent their careers either on military ships or as mechanics, electricians and plumbers, or in the heating trade.  But as time progressed doctors discovered that secondary exposure had sickened the wives and, like me, the children of those men.  They breathed in the innocent looking white dust particles that followed them home from work, caked to their clothes that were subsequently put in with the rest of the family's laundry.  Little children jumped into their daddy's arms when he came home from work.  Many children, like me, put on their father's jackets - without a clue what toxic substances were on those clothes.

Teachers and secretaries who worked in schools that had asbestos have also developed this form of cancer, as have the children who attended those schools.  And of course there are young adults who grew up playing in the vermiculite insulation that was peppered with asbestos in the attics of millions of homes across the country.  These young people, just starting their lives and their own families, are having to put everything else on hold to fight this horrible disease.

The great news is that a growing percentage of patients, young and old, are beating this disease as more advances in the treatment of mesothelioma are being made.  A cancer diagnosis at any age is still more than devastating, but I am hopeful.  Many of us who have mesothelioma have built a community of support for each other.  we cry with each other and we celebrate the successes.

More needs to be done to cure this disease, though, and that's why I continue to share my story.  My hope is that this brings more awareness to this form of cancer that is striking the young and old alike, and to offer hope to mesothelioma patients.

bake sale for fighting children's cancer

Sometimes I don't win mother of the year.

More than just sometimes.

Tayler woke up one Saturday morning and informed me that she was fighting cancer today.

Okay...

Tayler does this.  When she brought home her snow cone maker (here) she started printing out fliers to come to our house and buy a snow cone for $1 to save the animals.  She put pictures of various endangered species on it.

I nixed it.  I wasn't comfortable with our address being plastered all over everywhere for strangers to show up at our house and give us money for a cause I didn't know how to support.  Does that make me a bad mom?  At first I didn't think so.  I was doing my duty to keep my family safe from strangers.  And I'm not at all comfortable with the idea of selling people things.

So on this Saturday, when Tayler told me she was fighting cancer, I didn't take her too seriously. 

"Oh yeah?  How are you going to do that?"

"I'm gonig to help with a bake sale."

"Is this a group that's putting this on?  Is it a part of something?"

"Me and my friends were talking about it at school and we want to do it."

Suddenly my walls went up.  If it wasn't part of an organization...
"Is an adult helping you?"

"No..."

And then I got mean.  Except, in my protective mother's eyes, I wasn't being mean, I was making a point.

"Okay, say I let you help with this bake sale (I was still doubting that it was actually even going to happen if there was no adult or organization to make it "real"), what are you going to do with the money?  How exactly is this going to help fight cancer?"

"I don't know..."

"Tay, I can't let you go." It was supposed to be at a boy's house.  A boy I didn't know.  No one was helping them.  Where were they going to get baked items to sell?  Who was going to watch them as they tried to sell things to strangers?  It was a fiasco and I didn't want my daughter to be out in it.

Tayler ran upstairs to her room where I heard deep heartfelt sobs coming from her. 

What point was it, exactly, that I had been trying to make?

Because I don't think I made it.

West, who had been sitting in the next room looked at me as I walked down the hall, on my way to Tayler.

"She's just trying to do something good," he says.

Having the pride issues that I have I replied, "but it isn't real.  It's not a real function.  And even if they do manage to earn money... where's it going to go?  Who's going to take care of it?  I'm not going to support adding money to another persons wallet because they let their kid have a bake sale in their front yard and then didn't know what to do with it."

I went up stairs where I found sobbing Tayler sitting with her back against her dresser, knees up to her chest, head on knees.

"Tay..."

What do I say?  I was struggling with my walls and inner issues and with the fact that this little girl just wanted to help those who were sick.

Finally I said, "Tay, if you really want to help fight cancer then you and I can sit down at the computer and google until we find a real way to help.  We'll find something that you can be a part of."

She numbly nodded. 

I went downstairs, not feeling any better about myself, when there was a knock at the door.

A little group of boys was on the porch asking for Tayler.  It was time for the bake sale.  I looked at that group of boys and thought, if all of these kids are pulling together to do this, then how can I say that  it's not real?

Tayler went to the bake sale. 

And me, being the horrible mother I am for breaking her heart, along with West, bagged up a bunch of cookies that we had just purchased at Costco that morning from the bakery and dropped them off at the bake sale.   Where I found a small group of third graders, including Tayler and Sean, who were so excited by every car that pulled over.  Tayler was all smiles as I handed her the bag of cookies.

"Thanks Mom!"  And she began to arrange them on the table that a much better parent than myself had set up for them.

  West and I went grocery shopping and I made sure I got change when I paid.  On our way home we stopped by that bake sale again, and bought our cookies back.

I learned a lesson that day.

A lesson that taught me that just because I'm older, doesn't mean I'm wiser. 

A lesson that taught me that just because she's nine, doesn't mean that she doesn't have plans for this thing called life.

And those plans are big.  And good.

Shouldn't I, as her mom, be the one cheering her on, instead of sending her sobbing to her room?

When Tayler came home she was all smiles.

"Mom!  We made $42.50!"  And then she handed me a heavy grocery sack. 

"What's this?"

"It's the money, Mom.  You said you would google and help me to find a way to help."

Those words hung heavy in the air for me.  I had expected the "hosting" parents to do, or not do, something with the money.  And yet here Tayler was, handing it to me with high hopes.  Man that girl's heart is solid gold.

I can't even begin to tell you how foolish I feel for fighting her on this, and I was determined to make it up to her.  So I emailed my friend Jennie, who's daughter is in remission from cancer, and I asked her what I could do with this money, specifically for fighting childhood cancer, being as these kids were the ones who pulled all of this together.

Right now Jennie is earning money for her Cure Search Walk for Children's Cancer team.  She gave me THIS LINK to donate to her team where "the money (raised) will fund and support collaborative research to find a cure for all cancers affecting children."

Jennie also shared this video with me to show to Tayler.



Tayler is donating to Cure Search.

Can you?

Learning the nitty gritty of breast caner... or the BRCA gene

Usually I prefer light and fluffy for the blog. For my facebook. And twitter. Everyone once in awhile I vent a little, let a little steam off, but for the most part, my "battles", my honest issues, are not put out to the public eye. Except this one. Because I think it's something we can all relate to in one way or another. Even if we've never had breast cancer (or any battle with cancer for that matter) we probably know someone personally in our life who had. Or is. So here's my story with it.
My mom had breast cancer at the age of 38. That's two years BEFORE the recommended age of 40 for getting a mammogram. My mom was adopted. There is no other medical history for me, than her. So the question is left hanging on whether or not this is a hereditary issue, or a random issue.
I just had my yearly with my OB-GYN, and after reviewing my cancer history that I had filled out on my chart, and the lack of history there on, he had some concerns. I'll have to admit, I was a little confused by his worries, but I trust him completely so I followed his lead. I have since done a little reading on the BRCA gene(s), but have only gotten as far as reading this website on the topic: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA. In a nutshell, this is what I understand of it, and more importantly, for this blog, what it means to me particularly. There are two genes that, if they have alterations, can lead to either breast or ovarian cancer. Usually, when a gene mutates, it has a second one. So if this gene already has a mutation, and the other one mutates, wa-lah, no back up. Cancer. The risk of those with these genes receiving cancer is high. And a sign of the gene can be that it causes cancer earlier on. Hence my mom having breast cancer at 38. That was a red flag for my doctor, and then not having any additional history... well, he's wanting to play it safe. Because, as he explained it, once he, as a doctor, detects ovarian cancer, it's already too late. It's a death sentence. Prevention is on his mind. So with my mom's history, and with the twist of the adoption and not having access to any farther history, I should be a candidate for insurance to help cover the hefty fee for the BRCA (BReast CAncer) gene. Which, for my test (it varies, I don't know why) is a whopping $3,340.00 out of pocket.

My insurance has denied coverage on this, saying they require two generations of cancer history for it to be a concern. I understand this. But our concern is... we don't have it. So my doctor is appealing.

Another method of prevention is breast MRI's. Apparently they catch more detail, quicker. And also, being young, my breasts are dense. And being thin, I don't have fat boobs and since fat is see through, and I don't have any in my boobs (is this a nice way to say I have SMALL boobs? LOL), my boobs are rather dense and can be hard to see through with a mammogram. My mom had cancer at 38, I'm now 32. My doctor doesn't want to take any chances.

Tomorrow is my first MRI. I get to do this yearly, with bi-yearly breast exams at my doctor's office. I'm not nervous or worried. I don't expect that anything will be found. I'm not even paranoid, but I feel it's a lot like flossing. Prevention now, can possibly save me a lot of pain later.

I plan on reading up more on the BRCA gene(s). I still feel I don't really have a firm grasp on this.

And maybe, just maybe, some of you might have some information that I don't know yet. Or I can share with you. That's what blogging is for, right?

So here's to prevention. And to hoping the appeal goes through to my insurance. To know, or not to know, it's a very good question.