There is a hole in my heart - Part 1

WARNING: THIS POST WILL CONTAIN HARSH LANGUAGE AND PERSONAL INFORMATION. IF THIS DOES NOT INTEREST YOU...I DON'T CARE.

There is a hole in my heart made by someone I have never met, talked to, or emailed.

Let's start at the beginning.


In March of 2009 Mark and I were elated to find out we were pregnant with our second baby. I had an emotionally stressful first pregnancy and was looking forward to a peaceful, exciting second pregnancy.

(In general, I am an anxious person. I tend to worry. A lot. Mostly about people I care about, etc. Currently I am on medication for this problem which has helped me tremendously. I only mention this as a precursor to this story because this feeling and emotion lead me down the path that I walked.)

Almost exactly three months into the pregnancy I noticed a portion of my left breast was red and inflamed. It was large in size and the skin was thicker in that area. I looked at it and thought, "hmmm that looks like mastitis." I have had mastitis four times so I know what it looks like. There was no fever, however. No pain. And no lump. This worried me. So I went to the internet. Yeah. I went to the internet.

Some would say that was my problem. Others have admired what came from that research.

One of the very first things I noticed was Inflammatory Breast Cancer or IBC for short. Something I had never, ever heard of before. Here is the definition of IBC by Whymommy:


"Inflammatory breast cancer is the rarest and most deadly of the breast cancers. It strikes young women as often as older women, breastfeeding mothers as often as grandmothers, and women with and without a history of breast cancer in their family. It does not always form a lump in the breast. Instead, it forms in sheets and nests in the lymphatic system of the skin, appearing only after it clogs the lymph system with cancer, causing the skin to swell and turn red as if in anger.

Sometimes, it appears first as a mark like a bug bite, or a bruise that just won’t heal. Sometimes, the texture of the skin changes first, becoming tough, hard, or with little dimples like an orange peel. Sometimes, it feels thick to the touch, or hot, or just … different.

Inflammatory breast cancer is often misdiagnosed as mastitis, especially in nursing women. The important thing to know is, if you are diagnosed with mastitis and it doesn’t clear up with 10 days of antibiotics, SOMETHING ELSE may be wrong. Please, please go back to your OB/GYN or other health care professional and talk to her again. Ask her for tests to rule out inflammatory breast cancer. Tell her that you’re worried, that something just isn’t right. Insist on futher tests and a skin and/or core biopsy. Because each week that you delay is a week that this cancer will grow and expand and be just that much harder to eradicate.

Survival rates for women diagnosed with inflammatory breast cancer are grim. Only 25 to 50 percent of women will survive five years. Believe it or not, this is a HUGE improvement over the survival statistics of just a few years ago — when only 1-2% could expect to be alive five years after diagnosis. Even with chemotherapy, surgery, and radiation, 90% of women will suffer a recurrence. This is a lifelong battle for those that are diagnosed, and it is a very difficult disease to battle, as it’s one of the few cancers that are obvious on the surface of the body; as it marches across a woman’s breast, it is very hard to watch."


Now remember, I am an overly anxious person to begin with and, combined with pregnancy hormones, I flipped the f*ck out. As I read more and more about that terrible disease I heard things like: can happen when pregnant, looks like mastitis, don't take no for answer, don't let doctors blow you off, demand proper testing, etc, etc, etc.

So off I went on my god damn crusade. A crusade which my husband will tell you was a nightmare. But I will get to that later. I immediately made an appt with my OB/GYN.

Here's how that went:

Me: Look at this.
Her: Huh. That's interesting. It's probably just hormones.
Me: Uh huh ok. What are we going to do about it?
Her: What do you mean?
Me: Well you notice it's only on one breast, not on both. That worries me. I have been looking on the internet (to my OB's credit, she did not roll her eyes at this point)and I would like to rule out IBC.
Her: You are too young for that.
Me: That's what many people have been told and then they die because they waited too long.
Her: It's probably just hormones. They do weird things.
Me: Can you guarantee that? Can you say with 100% certainty that this is benign?
Her: Sigh. I can see this is bothering you so I am going to send you to the best breast surgeon in the area just so we call rule it out.
Me: Thank you. That's what I wanted.

See, if you don't know me personally, you have to know that I tend to be aggressive and get what I want. This comes from running a business and taking care of children. There is not enough time in the day (or in your life) to just wait and see. I knew I would be spending my time worrying about it so why not just get it taken care of? So off I went to the surgeon.

Only it wasn't the surgeon she had recommended. He was totally booked and I refused to wait. So I made an appt with the next available which was a mistake in some ways and the right move in others.

This surgeon had absolutely no bed side manner and I could feel myself submitting to his will. I had taken my mother with me because at this point I was a ball of mush and if I can't be aggressive about something I want, my mother is the next best person to do that.

So here we are sitting in the room after having an ultrasound (which, BTW, is not something you should rely on when worried about IBC since there can be no lump with IBC) The surgeon walks in. He is a beefy, steroidal, cocky man that looks like he has never dealt with a woman, let alone a pregnant woman, in his life. He looks at the ultrasound and he looks at me.

Him: Your ultrasound looks normal. There is some thickening of the skin but that may just be hormones. We should wait and see what it does.
Me: Well all the research I have done makes me feel that the "wait and see" approach is not appropriate.
Him: Well I am the Dr and I think I know what I am talking about.
Me: Ok well, I gues----no wait a minute. I didn't come here to just walk away without having something done about this. If you can't help me I will find someone who will.
Him: What do you want me to do?? You are pregnant so we can't do a mammogram or a CT scan.
Me: I have read that those scans are inconclusive in detecting IBC.
Him: The only thing left to do is a skin punch biopsy.
Me: Ok. Let's do that.
Him: Why?
Me: What do you mean, "why?" What if you are wrong? What if this is something and I could have saved my life by finding it early which means I get to see my kids grow up. That's why! (I really wanted to end that part with "mother f*cker" but I didn't, to my credit)
Him: Fine. I will schedule you for a biopsy next week.
Me: I read on your website that you can do biopsies right at your appointment.
Him: I really don't have time for it today.
Me: I am not leaving until I have a biopsy done. I am going on vacation to Charleston next week and I don't want this hanging over my head. I can wait all day if you would like.
Him: Sigh. FINE lets' do this now then.

(BTW on my first day of preschool my father drops me off and says "we don't tolerate bullies. If someone hits you, you hit them back." It is a motto I have kept with me my whole life. This man was trying to bully me and I was NOT going to take it.)

To his credit, he not only did the biopsy, he took FIVE samples. You could tell he was thinking "I do not want this nut job back in my office."

During my research, I had read the punch biopsies can give a false-negative and that many pregnant women had their biopsies come back negative only to wait too long for a second opinion.

Three days later, Laurel, Greg, Mark and I were on the road to Charleston when I get a phone call from the doctor's office. Before I left the office, he had told me "My assistant will call with any negative reports. I will call if there are any concerns."

Ring-Ring

Me: Hello.
Him: This is Dr. -------. We just received your results.
Me: (looking for a bag, I can vomit in) ok...................
Him: After reviewing the entire results from the lab it looks like everything is negative.
Me: Him: Your welcome. I knew you were concerned and that's why I called myself.
Me: You told me you would call if it were bad news. In the future, start the entire conversation with "IT'S NEGATIVE...This is DR. SO and SO by the way." Don't lead in like that.
Him: HAHA, good to know.
Me: So I read that these things have a high false negative ratio. What's our next step?
Him: It is what it is.
Me: Well what IS it then?
Him: I have no idea.

Time for a second opinion....
(believe me, this story gets to a point....eventually)