There is a hole in my heart - Part 2

Continuing from Part 1...

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieve it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light. - Dylan Thomas


It was time for a second opinion.

Now, I have to mention I was having a hard time dealing with all the crazy possibilities my mind was seeing so I kind of dived into a deep depression. Looking back, I see the pitfalls. In the end, though, I believe this depression awakened my inner survivor.

You see, I was pregnant with my second child while running a business along with taking care of my older child. The crazy stress was just making every single thing in my life dramatic and the possibility of breast cancer was so fucking unacceptable that I did everything in my power to rule it out. I wasn't going to go quietly away. I KNEW this kind of cancer was fueled by hormones. The same hormones that were going crazy in my body which is what lead me to go get a second opinion.

The second Doctor was ok. Not great. She listened and did the exact same thing the first doctor did minus the biopsy. She said we would have to wait and see. I walked away from that appointment completely disheartened and no where closer to my goal. My goal was to do everything that was in my capacity to rule IBC out. I knew that if I didn't everything I could possibly do and still ended up with cancer, I would have absolutely no regrets. I would KNOW I did my best.
Only THAT would be good enough.

I was frustrated. I had read about so many women who had been turned away and told it was nothing. These ladies starting blogging about it (who eventually died from IBC) to warn women like me not to take any shit. I felt (in my crazy hormone driven brain) that it would be a disgrace to these women and to myself if I didn't do everything I could.

On a side note: I am purposely leaving out the role my friends played in this time of my life. It's too emotional for me to talk about. These women were there for me no matter what. They answered my phone calls every morning and listened to me cry. They listened...they didn't dismiss me. They were overjoyed when results came back negative. They called to check on me. There were there for me in a way I hope to be there for them when and if the time comes. Laurel, Tanya and April, if you ever read this. Thank you. I love you. Thank you.

So I started to do more research. I learned about MD Anderson in Texas. I knew that this place lead by a certain Dr. was at the forefront of not only cancer research but had opened a clinic specifically designed to combat IBC. They knew how to treat pregnant women. They were one of the first to treat pregnant women who had cancer with chemotherapy. They discovered that women do not have to abort their child to kill cancer. Chemotherapy did not pass through the placenta. Another wonder of evolution. These people were kicking ass and taking names.

I knew it would be impractical to go to Texas on what information I had. So I did a little snooping. I found the head Dr's email address from one of his publications on another website. I sat there for a good 30 minutes thinking about whether or not to email this man.

So I called my friend Tanya.

Me: What do you think I should do? Do you think I should actually email this man? He is going to think I am insane.
Her: It's your life. Do what you have to do. It won't hurt to try.
Me: Ok.

The email's subject line was "Pregnant women with possible IBC." I wanted to get his attention. The email went something like: "Dear Dr. So and So, I have had two opinions from doctors about this but I am worried I am being dismissed." I went on to further explain what my symptoms were and I asked him if he thought I would need a third opinion. I honestly never expected to hear back from him.

He responded in two minutes.

No shit. One of the lead cancer researchers in America emailed a complete stranger back and said, "I need to see pictures. I can't tell what I am looking at just by a description."

Hmmmmmm. For a second my criminal justice degree kicked in and said "Are you seriously going to send pictures of your chest to a strange man over the internet???" So I called Tanya again.

Me: He emailed me back.
Her: AWESOME!! What did he say?
Me: Ummm....he wants me to send pictures of my boobs.
Long Pause
Her: Ok, then do it.
Me: What if it's a strange man and not who I think it is?
Her: Don't take a picture of your face just your boobs. That way it can't be associated with you if it gets in the wrong hands.
Me: That's good thinking.

So I took pictures of my chest and sent it to a strange man over the internet. Yup I did that.

He writes me back in two minutes. "I see what you are saying and there is definitely some thickening of the skin. I have researched this phenomena before with women who have not had IBC. I think it warrants a third opinion. I see you are in Richmond. If Johns Hopkins is close to you, I would suggest you go there. "

In a matter of ten minutes I had validation for my aggressive approach. When I explained what I did to my husband later that night, he just looked at me in wide eyed wonder.

It was around this time I came across Susan Niebur's blog.

toddlerplanet.wordpress.com/

This series of posts is dedicated to her.

More to come...