I Was Diagnosed With IBC When Pregnant/Nursing, on Facebook

I’ve started a page on facebook specifically for women who were diagnosed with Inflammatory Breast Cancer while pregnant or nursing and who were either misdiagnosed, put off treatment, thought they had a plugged duct or mastitis.  I’m doing this so I can connect with other women who went through this experience and hopefully in the very near future I’m hoping to start an informational web site for women who have mastitis that won’t go away…and need to know the possibilty is there.  I had never heard of IBC.  I don’t want to “freak out” breast feeding moms but at the same time I know IBC is very fast spreading and information and treatment early is key to survival.  So if you know of someone who was diagnosed with IBC when they were pregnant or nursing, please let them know about this facebook page

She has changed my life

The She in this story is a many-faceted being. She is the Blogosphere, BabyCenter’s Bulletin Board posters and the greater internet family of lurkers.

From the Internet’s inception (thank you Al Gore? Ha!) I have been infatuated. I knew she was the best thing since sliced bread. I knew I would never be lonely or bored or lack for information again. I was it’s her biggest promoter amongst the older women I worked with who couldn’t see it’s usefulness. “You want to know who was in that movie? Why let me look it up on the internet for you.” Click, click, click, click. “It was Lorne Greene. Anything else you need to know?”

In February 2004, however, our casual relationship became serious. I was 6 weeks into my third pregnancy (#2 ended in miscarriage at 11 weeks) when my fallopian tube ruptured as I drove myself to the ER. It had been an ectopic pregnancy. I was devastated. Not only had I lost a second child but at 38 years old I had also lost one of my fallopian tubes and half my chances of conceiving. I was not in any high risk groups so I was also confused. I turned to the internet looking for answers.

I stumbled across BabyCenter’s Bulletin Boards doing a simple search. I lurked a bit reading other women’s experiences that sounded so much like mine. I read the caring, thoughtful responses and knew it would be safe to ask my questions there. That was the beginning of a relationship with a group of women that still exists today. They supported me and comforted me through negative pregnancy tests, charting my cycles and lamenting my advancing age. We cheered each positive pregnancy test and cried for each loss. I met my best friend, C, on that board. We talked on the phone daily for 2 years before we ever met in person. Daddy-O used to call her my imaginary friend.

In fact, C was the second person I officially told about my cancer diagnosis. I felt bad for it too because her best friend had died of the exact same disease (Inflammatory Breast Cancer) just a few years before. All of this, my diagnosis, etc., was before we had even met. She cried with me. She researched with me. She talked me down from panic when I tried to read my own CT Scans in my car on the side of the road. No real, “flesh and bones” friend could do any more than that.

I continued to post with my BabyCenter buddies through my cancer treatment. It wasn’t until I was back to work that I discovered blogging. By then all my BC friends had had their kids, as had I. Most of them were SAHMs, though, and I was back to work. It was a little harder to connect. C, sent me a link to a blog post my Amalah that was hilarious. From there I clicked on links in her blogroll. Soon I was clicking my way through the Blogosphere meeting the most amazing women. They were witty, intelligent mothers with things to say. Their lives became the highlight of my day.

Soon, I decided to start my own blog. I’ve never told anyone this before. My friends and family probably think I started a blog because I like to hear myself talk or can’t stand not to be in on a trend. The honest truth, though, is that I was looking to the future. I thought it would be a great place for everyone to be able to check on my condition when my cancer metastasized. Ha! How’s that for borrowing trouble? Of course my attitude has changed a bit over the last year or so. Now I say, “Just call me 10%, Baby!!!”

Through my blog, I met Susan from Toddler Planet, and Judy from JustEnjoyHim and from Toddler Planet so many others. I made a point to make myself available for questions and answers when Susan was going through chemo. I wanted someone to benefit from what I’d already been through. Inflammatory Breast Cancer is so rare there are no other cases in my immediate area. I tried to do the same with Judy. And Sarah from Spruce Hill. By that time, however, I was getting really busy at work and at home. It was getting really hard to keep up with all the individual blogs.

I really felt the loss. I was missing out on so much. Things were happening in the lives of these women, they were sharing important medical information and research they had found or been given, they were increasing awareness for IBC and I was out of the loop.

There is so much information in the internet’s vast resources, which cross borders and domains, one surfer cannot possible hope to access it all. But a network of bloggers with a common quest, sharing knowledge gleaned from her myriad sites, can increase their understanding exponentially. More importantly, That same network will expand that insight to their readers and so on and so on. Wasn’t there a commercial like that once?

I could go on and on. I could talk more about my son’s rare genetic condition, Norrie’s Disease, that caused his blindness. It is so rare that most eye doctors have only maybe heard of it. His specialist treats kids from the entire western half of the US & Canada. Through the wonderful, wonderful internet I am in contact with specialists, parents and adults with the disease through another bulletin board and Family Connect. In another time I would have no information about Norrie’s. I would have no glimpse into D’s future. I would not benefit from the experiences of parents who have come before me.

Oh, she has changed my life, alright. The internet has given me friends and family, information and peace of mind, strength and hope. I want to share it with everyone! That’s what the internet is all about. That’s what Mothers With Cancer is all about.

Ask me no questions, I’ll tell you no lies

Today was my seventh 3-month follow-up oncology appointment. For those of you who don’t feel like doing the math this late in the day, that’s 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I’ve already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don’t have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I’ve somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn’t even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards – which I have not made yet. My bad. Then we got down to business. Thanks to posting here I’ve developed the courage to ask the questions I’ve been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I’m coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you’ve fallen into that niche of ones who sneak through.

More good news. This was working out better than I’d hoped. So I asked about the infamous Cancer 5 Year Mark. “Does that hold true for Inflammatory Breast Cancer also?”

“I’m going to say ‘yes’,” she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It’s nice to know she’s keeping her eyes open for me. I’ve wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It’s not about drinking milk. It’s about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She’s also closely watching Avastin for it’s benefits in preventing recurrence.

I had read about both when they came out so it’s nice to know I’m keeping up well enough on my own.

I want to send a big Thank You to every one of the women here at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.

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Toward that end, I would like to direct you all to the Discuss tab at the top of the page. There is a link to a discussion board there. It is just beginning to take a foothold. Only through participation will it grow strong and become a community, a resource, a source of knowledge. Please take the time to register and introduce yourself on the Introduction topic.

If you have any burning questions or topics of interest feel free to start a new topic.

Stella