How to be a (bald) party pooper

I knew that some day I would have to face this, only I didn't expect it to be so soon.

Last night I was invited by my children to attend a music show they had prepared for me in our game room. I walked in the room and saw that indeed they had everything ready. The room was clean, the amp and microphone was ready, music playing in the background.

They gave me a few minutes to sit my tired bones on the recliner. A few seconds later Brian joined us too. Natalie hit play on Darian's mp3 player and notes from Kings and Queens by Aeorsmith filled the room. Natalie was "playing" the fake guitar the boys use to play Rockband, a video game that they all love to play, and David was keeping the rhythm by clapping his hands. Darian picked up the microphone and started singing. He did such a good job! Way to go Darian! We all loved it! It was so special!

I don't know why, but after they were done and we were all together for the first time in a while, all happy and relaxed I thought it might be a good opportunity to talk to them a little bit about what has been going on with me and what to expect next. I know...what was I thinking? What a party pooper!

I started explaining to them that I feel fine, how lucky I am that chemo didn't make me feel too sick the first time, but it might be a little harder as they give me more, and I explained to them some of the symptoms that I have now, like pain in my joints, fatigue, low blood count, shortness of breath etc.

I also wanted to prepare them about the upcoming surgery. I explained to them that chemo was Step 1, but there are more things I need to do afterwards. I tried to explain to them about how the surgery is done and what my choices are.

When I told them that I'll probably do the double mastectomy and not just a lumpectomy, Darian started to get visibly uncomfortable. He wanted to know the odds, and numbers.
I simply answered that I'm not sure and continued to go on, keeping in mind that maybe I'll have to tone things down a little bit, so that they don't begin to worry about me too much.

Brian gave me a look and said in Greek, "Don't you understand? He needs to hear it in numbers." I got it. Darian's ability to understand things is all revolved around numbers, statistics and odds." I quickly back tracked and said that Daddy would explain the odds of not having cancer again after completely removing the breasts in numbers, so you can understand. Brian was able to break it down in simple terms so that everybody understood that whatever my odds of a recurring breast cancer might be, they would be cut by 90% if I removed the breasts.

Then I made sure to explain to them that a plastic surgeon would reconstruct my chest and it would look the same, if not better! Mom would look exactly the same! Nobody will be able to tell that I had surgery and removed my breasts, because I'll have new ones!" I said excitedly.

For David the conclusion was easy. "I think you should do it" he said simply. Darian understood, but still looked uneasy. Natalie was jumping on the treadmill or climbing all over my chair humming songs to her self, so my guess is that she was the easiest to persuade.

I went on explaining them that after the surgery it's going to take me a little longer to recover. It's going to be a bit painful, I'll have a drain for a couple of weeks, I'll need a lot of rest and I won't be able to pick things up for a while, so we will all have to be patient until I get better.

I noticed Darian had started to rub his eyes. He was trying to hold back tears. I signaled Brian to go sit by him. Brian went and took him in his arms. We tried to explain to him that mom is fine and she'll be even better once she gets this cancer out of her, but he was inconsolable. He kept rubbing his face silently while tears were pouring out of his beautiful blue eyes.

I got up, sat right next to him and hugged him. I tried to calm to him and validate his feelings while I kept saying that I will be all right. "It's OK to be sad, it's OK to feel angry, it's OK to be scared. I feel the same way too. Can you tell me how you feel?" I asked.
"I can't, I can't!" were the only words that could come out of his mouth. By that time Brian and the rest of the kids left the room in order to give us some privacy. I asked them to get us some ice cream, and I was left alone with Darian, still holding him tight in my arms.

"Can you talk about it?" I asked. "No," he nodded. "Could you talk about it to someone else?" I insisted, thinking my therapist might be able to help him out. "If I can't tell you mom, than I doubt I could tell anyone else! I don't know what I'm feeling. I just don't know." I gave him another tight hug and told him to know that I love him, that I promise him everything will be fine, and not to forget that it's OK to have those feelings, even if he can't describe them yet."

Then the ice cream came and we all felt a lot better! :-)

I think this is the hardest part of this whole thing. When the kids get terrified and worried, and there's really no way to protect them from what's coming. I too have feelings that I can't describe from time to time. Despair, fear, anger. It's hard to put into words the frustration that cancer leaves you with. It isolates you. But when you see this whole mess touching your children's heart, then it's unbearable! I wish there was something I could do to take their fear and pain away.

But wait! The situation gets "hairier"! This morning I woke up and tons of my hair had started falling off. I decided to take a shower and use the new shampoo I bought from the wig place. Supposedly it helps get rid of the toxins from chemo and it helps sooth the scalp.

I was excited to try it. I let the water drip on my head and I felt the weight of my wet hair on my shoulders. When I lifted my arms to start massaging my scalp, alas, tons of my hair was left in my hands. Wherever I touched hair just fell out in bunches, but that's not all! In the mean time the falling hair had started getting tangled up with my remaining (still attached) hair and pretty soon I had a really whopper of a...tangled situation in my hands and head.

I stepped out of the shower almost trembling. I called Brian and showed him the tangled mess on my head. "What am I going to do? Do I need to shave my head?" I remember how the lady at the wig shop asked me if I wanted to, and I felt it was too soon and said "No." Now I had to face the fact that the time has probably come.

I tried anything I could get my hands on to make it better. Tons of conditioner, Infusium, hair oil, you name it I tried it. Nothing worked. Every now and then I would stop and try to comb it. I can't describe how much hair I lost by doing this! I would touch my hair and long stretchy tufts would just slide out, sometimes without even pulling. After I filled an entire sink full of hair I decided I had to admit my defeat and accept the realization that the only way was to cut it.
I told Brian I wanted to be alone, but he insisted he wanted to stay. Finally we agreed that he should do it, so we found some good scissors and he started cutting the bottom first, and then moved on to the tangled part, trying to save as much as he could. Good boy!

So now I have a shorter haircut that doesn't look half bad, thanks to Brian. He did a good job afterall! I also have a bunch of dead toxic hair sitting in my sink that I need to clean up, but not before I take some pictures! I've never seen so much hair in my life! I have to keep a record of this for posterity!

It's a good thing I already bought some scarves! I wore my favorite one with a straw hat I bought from the wig shop. Now I have to swallow the fact that I actually have to get out of the house like this. The kids have their Opening Day for their baseball season and I have to be there. I can already imagine all the people looking at me knowingly, with their "she has cancer" look.'

But it's time for me to go. So I'll take a deep breath, keep my fingers crossed and pray that I survive my first public appearance with my new "cancer look". I was able to fake it so far, but I'm afraid these days are over.

So, keep your (half bald) head held up high, and off you go for new adventures, cancer girl!