My son is a sponge

If you know anything about me or my family, you know that we have had some concerns about Henry's development. It's such a long story so I don't feel like retelling it. It is, however, becoming more apparent by the day that Henry is a sponge. He soaks everything up and releases information very slowly.

He sat up at 3 months old. I believe this was because he couldn't reach what he wanted to while laying on his back.

He ROLLED OVER at 8 months old which was well past the time he was supposed to. I believe he didn't roll over since he never felt the need to. I also believe that he rolled over, finally, because it was an accident.

He never crawled. He crab crawled which was hilarious to watch. Not once did he get up on all fours and crawl.

Henry walked at 15 months. Which is right at the end of the normal range.

Henry has been huge from the start. He also had an older brother to pretty much do whatever Henry wants. There was no motivation there. Maybe, as parents, we didn't provide enough motivation but you could dwell in parental guilt all day long. It serves no purpose.

The point is, Henry has always done things when he feels he needs to do them and not a moment sooner.

For a while now, we have had some concerns about Henry's language. He has had about 10 words in his vocabulary for a while now but nothing more. Since we have taken him to a neurologist and a developmental  doctor, we know there is nothing wrong.

That boy continues to bewilder us.

Mark was reading him a Richard Scary book and Henry just starts pointing to objects and naming them with the colors. Mark and I look at each other with a "WTF" look.

Today, as Henry was sitting on my lap as I was working at the computer, he pulls "Hop on Pop" and starts to flip through the pages. I reach over him to type an email and he says, "MAMA! Trying to read a book" with such exasperation that you can tell he is truly pissed. He then hops down and takes his book elsewhere.

WTF?

There is absolutely nothing wrong with this child.

There is a hole in my heart - Part 4

Susan was not so lucky.

I found Susan Neibur's blog during a time when I was frantically looking for women that had the same symptoms I had and turned out to be fine. There are a surprising few of us. I found only one other blog where a woman was pregnant with symptoms like mine and it turned out to be benign.

It became apparent to me that this kind of cancer was a special kind of awful. It attacked young as well as old women. The amount of women I found that had actually been diagnosed while pregnant was repugnant and awful. To think that the most beautiful thing a woman can do is overshadowed by the need to survive. The need to pump toxic chemicals into your body just so you can see your children grown. In these cases, however, these women put themselves through everything from radiation to chemotherapy to stem cell transplant. It wasn't even to cure the cancer. It was a fight to add years to their life. To be able to enjoy one more year with their children.

I was floored. I kept coming across women who had started blogs to document their progress only to find them half finished and empty as one by one these women lost their fight with cancer. In an ironic twist, this kind of cancer seemed more aggressive with younger women.

In my pregnancy driven hormone induced craze, I cried for these women. These women I never knew. Their blogs left unfinished like a book half written. Like ghosts in the internet.

Susan was the golden light of everything that was true, heroic, strong, and intelligent. Her blog was filled with hope. I have a hard time explaining what is was I liked so much about her. She lived life. She shoved memories in wherever she could. She knew each and every day that medicine gave her was not to be wasted. Her blog is essentially a love letter to her husband and boys.

Susan used her blog as a way to reach out to people to gain the support she needed while providing love and support to others. When it became apparent that she was losing her battle, the thousands of followers she had, stood by like a virtual shield at her bedside. Up until the very last blog, she showed hope, courage and a need to survive. Just one more day. Just one more.

Three or four times a day I would go back to her blog to see if she had updated. I thought about her constantly. Then came the final entry labeled "goodbye." I immediately started to cry. I had never met this woman but in a strange way, she has left a very large hole in my heart.

The world has been deprived of a wonderful human being and it makes me angry. So angry.

Educate yourself. Educate others. Don't shy away from what is frightening and depressing.

Hey Cancer, we are coming for you and we won't stop.

"No princess fights alone."

Goodbye Susan. We will never forget.

There is a hole in my heart - Part 3

During this entire ordeal there was a different battle at home. My husband, who was on the outside looking in, felt that I had completely gone loony bin insane. He supported the first trip to the surgeon. He supported my vigilance. He supported me but felt I was over reacting. He knew I couldn't see the forest through the trees. He was frustrated by my emotion and he didn't want to support an unhealthy depression. In the end, though, he was always there for me. Always.

I know I said I dedicated these posts to Susan but I am also dedicating them to my husband. He stood by my side no matter what. Sure, there were disagreements/arguments about my approach to finding answers. In the end, though, he was there with me at Johns Hopkins.

Getting to Johns Hopkins is like driving through "The Wire" in Baltimore. It's a tad scary.

Walking into the hospital is breath taking. I came from doctors who were just trying to get you out of the door. This hospital lived and breathed. These doctors cared. Of course they did, they wouldn't be at Johns Hopkins if they didn't.

My first appt was with the radiologist to do an ultrasound (another one). My previous experience with radiologists had been very pleasant. They had always answered my questions and explained things to me. This man was a complete and total asshole. He ignored me and asked me not to talk since it was distracting him. He then, immediately, turns around to his assistant and asked if she had seen that awesome game yesterday. He didn't even look at the affected breast. He left without saying a word to me and I burst into tears. The assistant had NO idea what to do with an emotional pregnant woman so she took me back to the waiting room where I cried on my husband's shoulder until we were called back to see the doctor.

I have had two Muslim doctors in my life. The first one saved my life and the second was this man. He saw me crying and immediately comforted me and asked what was wrong. I told him, "I did not drive all this way, have my husband take off of work so that I could be told nothing and be treated like absolute garbage." My husband was so upset that he asked the doctor, "What in the world was this guy doing?? He didn't even look at the right part? What is going on????"

The doctor walks out of the room and immediately gets on the phone and demands to know what there is a pregnant woman in his room claiming that she was treated horribly and crying her eyes out. He comes back, does him examination and proceeds to get me squeezed in immediately with another Radiologist.

This Radiologist looks at the right spot. And finds a huge lump. She then proceeds to do a biopsy right away. She rushes the results. She calls me the next morning to tell me that everything is ok and I shouldn't worry.

In the end, nothing was explained. I didn't find out what it was and frankly, I am scared that it will come back if I get pregnant again. Not a single person could tell me what it was.

Do I regret going through all of this? F*ck no. So what if nothing became of it? If my experience helps other women to find their balls and stand up to bully doctors, then it was all worth it. You get to live one life. ONE LIFE. Don't let anyone keep you from what you feel is right.

To my husband: Thank you. Thank you for never leaving my side through all your frustration. Thank you for always supporting me no matter what. Thank you for keeping the promises you made to me on our wedding day. I know this time in our lives was hard but our marriage is rock solid because of it. You are the definition of a real man.

Now on to the hard part...

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...

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)