Wednesday, August 19, 2009


For the first time in a long time, I was so upset and angry today I wanted to throw things. The last time that happened I was aiming at someone. Today though I’m just mad at the universe, and since it’s really hard to hit the universe with a dinner plate, I managed to restrain myself.

Tiana had her post op appointment at Shriners today, and as I’m sure you’ve already guessed, we got some bad news.


Do you see it? Maybe this will help…


If you’re still not sure what you’re looking at, let me explain...

The two bright white stripes are the rods that hold Tiana’s spine as close to straight as they can get it. At her last surgery in May, they got her down to the straightest she’s been in four years, and that was a thirty-six degree curvature.

After so many years of adjustments and with her advancing age, the doctor found that her spine is starting to get stiff, and that they wouldn’t be able to adjust her anymore. They were going to leave her for about a year and then perform the final fusion.

A year of freedom; a year of not having to worry about an upcoming surgery. We were all pretty happy, and looking forward to letting ourselves relax for a bit.

Well, today a year just became three months.

A couple of weekends ago Tiana started complaining that her back hurt. The rod hooks at the top of the spine can sometimes become dislodged, and it’s very noticeable when they do, we took a look at her back but didn’t see anything out of the ordinary. So we told her she should get her butt up off the computer and do something, and that she’d probably feel better.

Today at the doctors they found that her pain wasn’t just from stiff muscles. It turns out that her rods have broken. That’s right, not one, but two of the titanium rods, snugged up against her spine, snapped under the pressure.

Ok, yea, I’m probably being a little dramatic with my description, but I’m still pretty upset, so cut me some slack if you’d be so kind.

Here’s a close up of the damage (click for a larger view):


And because I know you’re not all doctors, and because it took me a minute to catch it even though I see her x-rays all the time, a visual aid:


The top circled break is pretty self evident, but it took me a bit to understand that the bottom-left pieces are actually supposed to be attached to one another.

Kinda makes you wince, doesn’t it?

The good news is that even without the support of the rods, her back is still holding at about a forty-five degree curvature. The other good news is that there’s not a whole lot of movement in the broken portions when she moves. That gives us a little time to prepare for surgery. If those two things hadn’t been on our side today, Tiana would have probably been admitted to the hospital immediately. (If that’s actually a blessing. Part of me is wondering if maybe it would be better not to have the extra time to worry about it.)

As it stands, they’re letting her wait until after her birthday in September. So the end of the summer won’t be ruined for her, she’ll get to start school on the first day and see her friends, and she’ll get to celebrate her birthday without stitches in her back.

The bad news is that none of us were prepared for this, and I don’t know how John is feeling about it right now (we haven't had a chance to discuss), but I personally would love to throw myself on the floor and have a grand ole’ tantrum. I won’t, just like I didn’t throw the plate earlier, but it sure sounds like a fun way to let off some steam.

Besides, if I did, John would feel compelled to video tape it and post it on youtube. :)

Anyway, I wanted to get the pictures up, and the word out to our family and friends. I’ll let you know how we’re doing in a few days once we’ve had some time to process things.


Tuesday, August 11, 2009

Fuck Cancer

I know my blog isn’t among the most popular. Most days I get about ten hits, and on the days when I post something new, I might get fifty if the post is particularly entertaining. For this post though, I’d like to ask everyone who may stumble across it, to read the whole thing, and if it strikes a chord, pass it along.

First off, I’d like to say that if the title of this post offends you, I’m sorry. I’d like to say that, but I just can’t. Most of the time I censor that word, turning it into F*** Cancer. Today though, I’m too tired and too upset to apologize for a bit of profanity that sums up situation perfectly. I’m also sure, since you are a rational thinking human being, that while you may be offended by the word, you can at least relate to the sentiment.

Earlier this year my friend Tom, from the Tommy D’s Nutz show, was diagnosed with paraganglioma. His symptoms were innocent enough, mimicking a hernia, and we joked with him because he’d been putting off going to a doctor. In one of those ironic twists that the universe so enjoys throwing out there, I joked that he needed to see a doctor because for all he knew he probably had cancer.

Yea… That one came back to bite me in the ass.

After his diagnosis, Tommy was looking at the Lance Armstrong “Live Strong” cancer bracelets and considering purchasing one. As he told us later though, it didn’t really express his feelings on the matter so he decided against buying one. John asked him what he would want a bracelet to say, and Tommy didn’t have to think about it for very long before he replied “Fuck Cancer.”

For Tom’s birthday John had twenty-five black silicone “Fuck Cancer” bracelets made. Tommy opened the package up on the air, and was extremely excited. We knew he’d love them, but what we didn’t know was how much everyone else would love them too. Tom sent a bracelet to each crew member of the show and passed the rest out to his friends and family, but the demand exceeded the supply. They didn’t last long, and people were still clamoring for more.

The idea was hatched to order more bracelets and sell them, having all of the proceeds go to charity. There were those among us who thought that Tom should be the charity. Do you know how expensive cancer treatments are? Tommy gave the idea a thumbs down though, and it was decided that the proceeds would go to cancer research charities. The first of which is the Susan G Komen foundation.

Being married to John, and a regular on Tom’s show, I was among the first to receive a bracelet. I’ve worn it proudly ever since and have yet to take it off. Sure there are situations where it’s not appropriate to have Fuck Cancer emblazoned on my wrist, but when those circumstances arise, I simply flip it inside out and it looks like a plain black band.

In the months that I’ve worn and promoted the bracelets, I’ve talked to a lot of people and heard many stories about cancer and the impact it has on individuals and families. I’ve looked closely at how my own life has been touched by cancer, and I’ve come to realize that there is not a single person alive today that hasn’t been affected by this killer. You’ve either battled it yourself, or have watched someone close to you fight for their life.

Tommy has now had more rounds of chemo than I’ve been able to keep track of. He’s had to miss many shows because he’s been so sick from the medicine that is attempting to save his life. Yet he jokes about it, plays chemo side effect bingo on the show, and keeps his spirits high (with a little help from his friends). Maybe it’s because laughing is so much better than crying.

Some days it makes me extremely sad, but most of the time, it just pisses me off. I wonder why this is still a deadly threat? Since I was a child this disease has been in the headlines. Miraculous advances have been made in medicine during my life; MRI Technology, Genome Mapping, Vaccines for Chicken Pox… Yet we’re still waiting on a cure, or even a truly effective treatment, for cancer. It’s maddening.

What is even more frustrating is when I come across cases where research money is being squandered. Today for instance, when I was looking for some information for this post, I found an article titled “Study Finds Genetic Link To Skin Cancer.” Did we not know this already? Isn’t this common sense? I have fair skin because of my Northern European ancestry, There have been others in my family with fair skin who have had skin cancer. I know, that because of my fair skin and previous cases of skin cancer in my family, I have a higher risk of skin cancer than, say, my Italian husband. I didn’t need a ten million dollar research project to tell me this.

So much time, money, and effort is being spent on telling us what increases our cancer risks. I can answer that pretty easily, and I don’t even have a college degree… Living significantly increases your risk of cancer! Now that we have that cleared up, let’s work on curing it.

Sound like a plan?

The most surprising thing for me through all of this was when I told my parents the story of the bracelets. I wasn’t going to tell them because of their age and religious beliefs, I didn’t think they’d appreciate the language. My mom had been giving me an update on my aunt who is suffering with breast cancer though, so I decided to take the plunge and share the story. They actually thought it was a great, and the next day I just about fell off of my chair when they called to order twenty bracelets.

People can surprise you. I’ve been surprised a lot while I’ve been working on the bracelet project. I was surprised when I heard that several moms had ordered child sized bracelets for their kids who are undergoing treatment (yes, we have them). I’m surprised by the human resilience I’ve seen in the survivors, the sufferers, and those who have lost loved ones. However, I’m mostly surprised by the overwhelming acceptance and support of the bracelet project, even from those who I thought most likely to condemn it because of the profanity.

I think it’s because we’re all just fed up, we’ve had enough, and we’re ready to have every oncologist currently employed find a new specialty. It’s time we stood together, and said Fuck Cancer!


Buy a bracelet, you know you want to! They’re only $4, and over half of the proceeds go to cancer research (the other portion is for manufacturing and shipping). Wear it proudly, wear it inside out, or tell us to keep the bracelet and donate the whole $4 to the cause.

Then, tell us who you’re saying Fuck Cancer for! Tell us your story in the comments here on my blog, on facebook, on the Tommy D’s Nutz forum, or in the notes section of your order.

I wear my bracelet for:

  • Tommy D who continues to fight.
  • My brother, Ken, who survived and is still flipping cancer off.
  • Lori, who never had a chance to fight, and my sister who’s left with a hole in her heart where her best friend used to be.
  • Big John, who's had to duke it out twice.
  • My aunt Jeanne and her daughter Laurie who fought the battle together; one was lost, the other continues.
  • Bob and his wife Diane who now must live without him.

In closing, I just want to say that my greatest hope is that some day soon I’ll meet a person who has never had cancer touch his or her life. Then soon after that, we can send the disease into the history books along with polio and small pox.

Let’s work to make that hope a reality.