my Breast Cancer blog

2004, age 34 — this is my story
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Memories lost

Posted on 7/28/2007 By

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As time marches on, I remember less and less about what my boys did as babies. I guess this is natural. My mom says she has no memory of her girls ever misbehaving, fighting, or challenging her in any way. Surely, we did. It’s mildly comforting to know I’m not alone, but my mom has had more years than me to forget. She is 60, and I am 37, and I worry that chemotherapy has burned some of the paths connected to my past.

While I can’t recall the specifics of what happened six years ago, when Joey was born, and four years ago, when Danny was born, I do have record of it all, thanks to my scrapbooks and the detailed journaling that fills its pages. Writing is a gift in so many ways.

In August 2003, I wrote about Joey:

He talks a lot about the big guy. We are not sure who the big guy is but sometimes when we say “no”to one of Joey’s requests, he says, “The big guy says “Yes.’”

I barely remember this.

When Danny was a baby, I wrote that he cried every time we rode in the car. Once the car stopped, he smiled. He smiled all the time, I described. He was such a happy baby. This memory escapes me.

There are still moments that are fresh in my mind, like when my mom noticed Joey’s runny nose and asked him if he needed a tissue. “No,” he replied. “I have a long-sleeve shirt.”

I remember when Danny grabbed my hot curling iron with his nine-month-old baby hand, how he cried, how I took him for treatment every week for weeks and weeks, how guilty I felt for allowing the cord of this appliance to dangle off the bathroom counter, right where he could grab it.

I don’t remember Joey’s phrase, “OK, cowboy!” or how Danny bounced endlessly to music while his big brother danced his little heart out. Maybe chemo is slowly killing my brain. Maybe this is just what happens as time passes and experiences stack one on top of the other. Maybe it’s just not possible to store all that’s happened in the six years since I’ve been a mom. That’s what I prefer to think, anyway.

Recalling chemotherapy

Posted on 7/21/2007 By

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Two fierce forces are plaguing me at this very moment. They have been for one entire week.

It doesn’t seem to matter that it’s been two and half years since the last drops of toxic chemotherapy drugs made their way through my veins, hopefully putting a halt to any cancer cells trying to divide and multiply throughout my body. Still, all this time later, they can be recalled and can continue to poison me. That’s exactly what the force of chemotherapy is doing to me: it’s poisoning my skin.

The force of the hot Florida sun is chemotherapy’s partner in crime. When the two interact, my skin suffers. My dermatologist calls it UV Recall. She explains it like this: the sun has the ability to recall the toxicity of the chemotherapy drugs, even years after treatment, causing a severe reaction on my already-sensitive skin. Severe is no understatement. My skin is a mess.

Our family of four went to the beach last weekend. Despite my efforts to stray from the sun, I try with all my might to prevent skin cancer after years of basking in the dangerous rays, I still got burned. I was slathered in sunscreen, sat under an umbrella, and made only two brief appearances in the sun, once to cool off in the pool; once to walk on the beach. Somehow, though, I ended up with not only with a sizzling burn but with small little bumps all over my chest.

The bumps are nothing new. I’ve had them three or four times before, each time a result of the sun. They start small and cover a defined area of my body, then they spread, burn, itch, cause pain, and drive me virtually crazy. That’s what they’ve been doing for the past week. Today, they are just beginning to fade. Relief is in sight.

I’m not sure what I’ll do about future visits with the sun. Sunscreen obviously doesn’t work. It seems completely ineffective in fact. And seeking shade doesn’t always prove wise either. Trips to the beach? I’m not interested. Extended periods of time outdoors? No thank you. I think my last resort is to invest in some good ultraviolet protective clothing. I may end up covered from head to toe but as long my skin is safe in all areas in between, I’ll be happy.

Tonight as I tucked four-year-old Danny into bed, he said, “Can I feel your bumps?” There’s no missing them, and Danny has been an attentive observer of my growing rash. He’s watched them as they’ve appeared on my arms, legs, tummy, and back. “Yes, you can feel them,” I told him and so he proceeded to run his little fingers over the bumps, now dried-out and flaking. “Ewwww!” he exclaimed upon feeling their coarseness.

My sentiments exactly.

Ewwww!

A sensitive soul

Posted on 7/13/2007 By

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Sometimes, six-year-old Joey is a little rough around the edges. Just the other day, after I told him he couldn’t do something, he told me he didn’t really like living in our house. On occasion, he’s told me he doesn’t love me anymore. When he was younger, he’d declare, “I’m not your mommy anymore.” I’d tell him, “OK, that’s fine” and try to move on and tuck away my hurt feelings. Joey always recovers after his stern declarations, though, and then out pops the sensitive soul I know so well.

The other day, Joey took a bad spill on his scooter. He hit a bottle cap in the street and scraped his long, lean body across the pavement. He wasn’t wearing much, only shorts and flip-flops, so he was left with cuts on his hip, elbows, knees, tummy, and knuckles. He cried, no, screamed and pleaded for someone to make him better. I tried. I put him a cool tub and let him soak his wounds. I gave him Ibuprofen for his pain, helped him find clothing that wouldn’t rub his sore spots, and allowed him to snuggle on my bed in front of the TV, even though it was nearly bedtime. He asked for a blanket and when I told him to use my quilt, the one friends made for me during my breast cancer treatment, he looked up at me with a somber a face and said, “But mommy, that’s your special blanket that your friends wrote on.” My friends had written inspiring messages on the patchwork of the quilt, and Joey was worried his boo-boos might dirty what he knows is one of my favorite possessions. I let him use it anyway. It fared just fine.

Joey and Danny love to sing in the car. Sometimes I join them, like I did a few days ago. I’m not sure what we were singing at the time but as we pulled into our garage, we decided to stay put for a few minutes so we could finish belting out our song. As we were finishing and I was turning off the car, Joey said, “Mommy, you should be on the stage. Your voice is beautiful.” No one has ever told me that before, probably because my singing voice is not really good at all. Still, Joey’s compliment sent my heart soaring. What a guy.

Joey is a sweet boy. He tells me my hair is pretty, even prettier than it was before cancer, he says, and that I am nice to him and that he is so glad I’m his mom. I tell him it’s my pleasure to be his mom. He tells me it’s his pleasure I’m alive after cancer.

I think it’s best to take parenthood one moment at time. If we don’t like what’s happening during one moment, we should simply let it pass. Because what happens next might just warm our hearts, lift our spirits, and validate all we do in our demanding jobs. It works well for me this way. One moment at a time.

Not like school at all

Posted on 7/11/2007 By

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After his first day at Camp Invention, Joey told me his day was full of fun and playing. “It’s not like school at all,” he told me with a smile smothered across his six-year-old face. “Yes,” I thought to myself. He likes it. I wasn’t sure he would. He’s my tentative kid, the one most suspect of all new things. Danny, on the other hand, just goes with the flow.

Four-year-old Danny went to a local zoo today with his summer camp program. He’s never done anything with anyone other than family so this is a big deal. Simply going to camp on his own is an accomplishment. The successful zoo trip really makes me smile.

“We saw peacocks,” Danny reported just before dinner tonight. “They spread out all the feathers on their back. We saw a fat alligator too.”

“Was it hot outside?” I asked him. Danny tends to whine when we’re outside in our 90-degree Florida temperatures for extended periods of time. “I was hotter than the whole wide world,” Danny declared. Still he survived, had fun even. I am so relieved.

My boys are doing great during their time away from home. I’m doing well too. I’m exercising every morning, all by myself, for as long as I want. I’m taking showers in peace and getting ready at my own pace. I’m writing, tinkering, lunching, shopping, and soaking up every hour I have free of chaos and conflict. And then I’m rushing to pick up my boys, sometimes a few minutes early, because another moment without them would just be too lonely.

The three of us are surviving our test run with ease. I think we’re thriving too. No, wait, I know we’re thriving.

About to hit a milestone

Posted on 7/7/2007 By

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On Monday, our family will embark on a trail we’ve never before traveled, one that will carry us through many joys, challenges, and years. When our journey comes to an end, our boys, now six and four, will be teenagers. It will be a long road. And one I suspect will go so very quickly.

Our adventure has been six years in the making. And now it is time for both boys, simultaneously, to leave the comfort of home for the world of school. Now this is just a test run. It will last for one week. Joey will go to summer camp at his elementary school, and Danny will go to summer camp at the site of his future preschool. At the end of the week, we will resume our at-home summer activities. But first, we will all learn what it will be like when August 20 rolls around, when Joey goes to first grade, Danny goes to Pre-K, and I come to terms with my empty house, with my changing role as stay-at-home mom.

What ever will I do with myself for this one week? I may get a pedicure with a gift card I’ve had since Christmas. I may get a massage. I may go shopping with my mom. I will revel in silence, cheer at the absence of squabbles and screams, eat in peace, and marvel at how my house can stay clutter-free for hours at a time. I will write for The Cancer Blog, for Gainesville Parenting magazine, for this blog and I will practice what I will do full-time when that August day arrives. And life changes for good.

As much as I will enjoy the pampering, the quiet, the solid chunks of time carved out just for writing, I think somehow this won’t measure up to what I’ve been doing for the past six years. You see, I consider myself lucky to have had the opportunity to stay at home with my babies. It’s been an honor and a blessing to witness all they’ve accomplished. It will be hard to say goodbye.

Luckily, I will remain at home. I will drop my boys off at school and pick them up when each school day is complete, and I will devote my afternoons and evenings to my favorite guys. I will do it again and again, day after day. I’m confident it will be a happy trail. Once we all get accustomed to the new terrain.

Letting go

Posted on 7/6/2007 By

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I’ve been writing about cancer ever since I started this blog in December 2004. Nearly one month after I was diagnosed with breast cancer, I began journaling my experience. With each cancer twist and turn, I wrote. I wrote to communicate with friends and family, to reach others, to cope. After a while, I wrote for editors who offered me money for my words. I’ve been earning money off this whole cancer gig for more than a year now. It’s my new career, this writing thing, and when my little boys are both in school come August, I will spend my morning hours tucked away in my cozy home office, writing my little heart out. I will still write about cancer. But I also plan to write about other topics. After all, there’s more to me than cancer. I want to branch out.

I’ve taken my first step toward a new writing genre. I’ve chosen parenting as a topic. It’s one I know well and a good distraction from all things disease-related. So I’ve volunteered to write a monthly column for my local Gainesville Parenting magazine. My first columnThe Art of Letting Gowas published in the July 2007 issue. I just picked up a copy today. I flipped instantly to the very back page, and there was my name, my article, a photo I’d submitted of my oldest son, Joey, picking pretty purple flowers in a field. It looked great. And for the first few paragraphs, it read great too. And then I stumbled upon a change made to my words by the editor. Mostly, I don’t mind when someone edits my work. My uncle, a writer himself, once told me that someone else can always make our work better. I try to remember this. And so I didn’t mind that she cleaned up some of my wording here and there. What I mind is that she placed two extra words in a sentence that changed the whole tone of my story.

My story was about letting go, about giving up extra commitments and responsibilities so that I could spend the summer just being with my boys. No imposed structure, no timelines, no forced fun. Just the three of us, doing what we choose, free of boundaries. I introduced my message with a reflection of something Joey said when he was just three years old (now he’s six). It went like this:

One day long ago, Joey, three at the time, asked me, “Where’s daddy job?”

“Daddy works in an office,” I told him. “He goes away to work, and I stay home with you.”

“Joey’s response was prompt and powerful: “I want you to go away to work. I want daddy to stay home.”

Joey didn’t get his wish. His daddy still works in an office, and I stuck with my at-home job until life became more complicated and my responsibilities began mounting.

Here is what happened: the editor changed “I stuck with my at-home job” to “I was still stuck with my at-home job.” Call me crazy, which the editor just may do once she reads the e-mail I sent her addressing my concerns, but these two words say to me that I feel stuck in my job as a stay-at-home mom. I wanted my words to say that I kept at my job, I continued it, I remained an at-home mom. I have never felt stuck. And I’m sad my column comes off as such. I’m sad readers may get this impression. I’m sad that I don’t want my kids to see this column. I’m sad my very first non-cancer story came off with such a negative spin.

In the spirit of my “letting go” story, I plan to let this go. It’s the only healthy strategy, really. I have no control over what’s been done and all I can do is try to ensure it doesn’t happen again. It’s not a life and death matter. Therefore, I can move on and let this fade into the background.

Yes, writing helps me cope. And I feel better for having simply written about this.

I hate tumors

Posted on 7/5/2007 By

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See that black and white link to your right? The one that reads I hate tumors? It leads to an essay I wrote for a girl named Sara, an editor for JANE magazine. I don’t know Sara. She just called me one day, out of the blue, after finding my blog. We talked as I simultaneously tried to entertain my crazy little Florida boys and she walked the busy streets of Manhattan. Sara told me all about her best friend Heather who was diagnosed with cervical cancer and then shockingly died of the disease. Sara wrote a story about Heather that appeared in JANE and also started a website — it’s called I hate tumors.

At the time of Sara’s call, she was collecting essays from others who, for their own personal reasons, hate tumors. She would post them all on her site, she told me, and she wanted an essay from me. And so I wrote one for her.

My essay has been posted on Sara’s website for some time now. I just haven’t said much about it — mostly because there are a few edits that need to be made and I’d hoped to tell you about it once it was in perfect form. But I realized today that my words do nothing sitting quietly on a site if no one knows about them. So when you have a few extra moments, click on that black and white link to your right and read about my friend Amy.

Amy was diagnosed with breast cancer at about the same time as me. She died 15 months later.