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Any port in a storm (or why I love my port).

portSo I’ve had my port-o-cath for a little over a year now. It’s literally a part of me. This little medical devise was implanted under my skin last spring to enable my medical team to obtain easier access to my veins for purposes of administering chemotherapy. The catheter connects the port to a large vein in my neck. And under the skin, the port has a bubble through which drugs can be injected and blood samples can be drawn with less discomfort than repeated needle sticks. That’s the purpose of getting a port; and by and large, this was true in my case. The port saved me (and my poor infusion nurses) a lot of angst. But oh how I fought getting it. Read more

Letter to my daughter at 16 months.

1fav_M3_0009I don’t know what it feels like to have a child and not have the dark cloud of cancer hanging over my head. I was diagnosed with Stage 3C widespread gynecologic cancer when my daughter was just five days old. So, despite my best efforts to live each day in the moment, there’s almost always this niggling little voice in the back of my head reminding me, “you might not be here when that happens.”

I’ve tried to document things much more than I might have otherwise. That’s frankly one of the main reasons I did the CafeMom Studios documentary series, “It’s Cancer, Baby.” It’s also part of the reason I blog and write. I want my daughter to know me, even if I’m not around. And I don’t just want her to know about me. I want her to know about her as well, and how she was as a little girl. I love hearing my parents tell stories of how I was as a child. (Don’t we all?) So I decided to start writing periodic letters to my daughter at particular times in her life. Here’s the first one … Read more

Never too late.

late_bloomer_flowerI’ve always been a late bloomer. I sucked my thumb until age five. I played with Barbie dolls until junior high (which, in case you don’t know, is way longer than most girls). I was one of the last of my friends to get her period. In fact, I lied for more than a year about having gotten it, I was so embarrassed. I was out of high school before I got boobs.

I didn’t have a boyfriend until I was a senior, and was pretty sexually inexperienced going into college (I made up for it later). And speaking of college, I left after the first semester of my freshman year because I was homesick. Homesick. I later went back, but opted to go part-time while working and living at home.

I was a mama’s girl for sure. Read more

Telling stories.

pensive

I often tell myself stories, and not the good kind. Stories with unhappy endings. Negative fantasies.

Do you do that too?

George Washington said, “Worry is the interest paid by those who borrow trouble.” And I am so often guilty of that, borrowing trouble. I have burned a lot of energy in my lifetime, worrying and losing sleep over things that never came to pass. And I’ve paid a lot of interest as a consequence. Read more

Making peace with cancer.

Who, Me?I recently came to the realization that I may have no choice but to join the ranks of hundreds of thousands of cancer patients on this planet who don’t fully beat cancer but don’t die from it either. The patients who fall into the third option category.

The ones who just learn to live with it. Read more

The third option.

q-HCcyQBU4RXilCRZnngVfEkTlzek0gF23hAAJOW590,sny2Ni1woVsjP71J9WuIoAx3OgoFPJSfh4DpRIP217cA fellow cancer fighter, the badass Kaylin Andres, wrote recently in the Huffington Post about her ongoing battle with cancer. Her perspective really resonated with me, now more than ever. She said,

“… you start to let go of the prevailing popular opinion that cancer is a battle with only two outcomes — cure or death. There is a third, secret option, relatively unknown to the general healthy public: you learn to live with it.”

Now, if someone had told me when I was first diagnosed with cancer that I’d just “have to learn to live with it”, I would have said fuck that. No way. I want it out and gone. I would have said that anything else is simply unacceptable.

However, the truth is that sometimes we have no choice but to accept the unacceptable. Because sometimes what we once thought of as unacceptable is simply reality.

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I’m having my healthy breasts removed.

I recently found out that I have the BRCA1 genetic mutation. And even though I’ve recently gone through a hell of a year of intense treatment for widespread gynecologic cancer, I am now facing the fact that I am at very high risk for breast cancer. Like really high risk. I’m told that there is an 87 percent chance that I’ll contract breast cancer in my lifetime. And although at age 45, I’ve already lived through part of my lifetime risk, those odds are still uncomfortably high.

According to the National Cancer Institute, prophylactic mastectomy in high-risk women may reduce the risk of developing breast cancer by 90 percent. As I see it, I didn’t go through 3 surgeries, 24 rounds of aggressive chemotherapy, and a year of fighting my way back to health just to have another form of cancer come in the back door and take me out. Fuck that. This is why, when told that I could voluntarily remove my healthy breasts in order to save my life, I didn’t hesitate to say “I will.”

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Cancer and Parenthood.

Parenthood - Season 4Okay, this is not a post about cancer and parenthood (although I guess most of my posts are about cancer and parenthood). This is a post about cancer, and Parenthood. As in the television show, Parenthood.

I’ve never before written about a film or television show; and if you plan to watch Season 4 of Parenthood and haven’t yet done so, you should probably stop reading (spoiler alert). I have for some reason been feeling compelled to write about this particular show — and this particular season of this show — so I’m just going to do it.

One day last September, I awoke to find that my email box, cell phone and Facebook page had blown up overnight. These portals were flooded with comments such as:

“Oh my God… did you see Parenthood last night”?

“Watched Parenthood last night … tears streaming down my face thinking of you”.

“You’re in my thoughts today more than ever … watched Parenthood last night, thinking of you the whole time”.

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I got tested and found out I have the cancer gene.

1fav_M3_0020I recently made the decision to seek genetic counseling and testing to determine if, given my history of cancer, my daughter was also at risk for contracting the disease. Turns out, she very well may be. My first step in the genetic testing process was to see if I carried either the BRCA1 or BRCA2 mutations. If I tested negative, I would then have the option to go deeper and do further testing. Given my known family history and all of the relevant factors, I knew I had a relatively low 7.5% chance of testing positive for one of the mutuations. So I was surprised this week to learn that I had indeed tested positive for a BRCA1 deleterious mutation. In other words, I have the cancer gene. Read more

Eating healthy on a budget.

473299_10150909880343400_423498076_o-1I recently posted a column on CafeMom about my decision to feed our toddler an “anti-cancer” diet. Mind you, I wasn’t claiming that by feeding my child certain foods, she would never get cancer. Or that I would deprive her of occasional treats. Or that I thought I could control her diet forever. Rather, I simply talked about my choices of first table foods to introduce into my daughter’s diet, in hopes of getting her off to a healthy start and developing for her a palate for healthy foods. That’s it.

I was a bit surprised, then, when I received a flurry of pretty harsh comments about the article. I was called “nutty and sanctimonious”, among other things. Since I know that I am pretty balanced on this issue, I did not take these comments to heart.

Some comments that did give me pause, however, related to the cost of eating healthy, because I think this is a real issue. I also think there are a lot of misconceptions about it.

Read more