Can I get cancer if I hug you?

“Your head feels cool Ma, I love you” said Mack as he rubbed my baldhead.

When I was diagnosed with breast cancer my kids were upset. More than their tears and their fear – they loved me hard. They loved me a lifetime worth in the months after my diagnosis.

If I had ever doubted that I was loved in this life – they removed all doubt.

“Can I get cancer when I hug you? Will you be ok? Are you going to be bald? I like your hair Mama, will it grow back if it falls out. Why will it fall out?” Mack asked.

My diagnosis was hard on Samantha but she determined her role from the start – caregiver. Mack was younger and couldn’t truly grasp what cancer meant.

He was primarily concerned with what was going to happen to my hair. I didn’t look sick. I didn’t act too sick. He saw how tired I was after I started chemo. He saw me lay in the bathroom floor on a blanket near the toilet. I was too tired to walk from my bed to the bathroom to throw up after my first chemo. He watched me and he hugged me. He carried around hand sanitizer all the time. If I touched anything he said, “hold out your hand Ma. You gotta get rid of those germs”. He didn’t let me open the doors or push the grocery cart; too many germs. “Remember Mama; the doctor said you have to be careful about germs now.”

When my hair fell out –

Samantha hugged me and held me;

Mack was afraid of me.

When I was bald

I looked sick.

My kids loved the stories I made up for them when they were growing up.  Their favorite was a story about Aubrey, a mischievous albino bat and Ghostly, …well a little boy ghost. Each night the three of us would usually lie on one of their beds and I would give them the latest exploits of Ghosty and Aubrey. A few days after I lost my hair, I was telling them how Aubrey had snuck into Mack’s backpack and gone to school with him. She spent the entire day getting him into trouble.

Samantha and Mack laughed.

“Tell us more,” they asked. As I continued on with the adventures of Aubrey, I noticed Mack was rubbing my head. He hadn’t really touched me or hugged me since my hair fell out. I think he noticed he was rubbing my baldhead about the same time I did.

He looked at me and grinned – “ your head feels cool Ma, I love you”.

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A Naked Picture

I wanted to post a picture of me after I had lost my hair. I had not seen a picture of me with no hair since that time. I didn’t know how I would feel to see me then. I went through all my external hard drives looking for pictures and I couldn’t find any. I gave up; maybe there were no pictures chronicling my breast cancer journey. I had found a couple of me wearing a wig, which I have posted.

When I was bald.

I hid behind my wigs.

I hid behind my smile.

I hid from cancer. If I didn’t have to look at it, it wasn’t real.

I mentioned to my son I had been looking for pictures of that time. He said, “I have one of you and Uncle Cliff.” I was surprised. I am not sure how he ended up with one but it was a relief to know there was a surviving picture. It was not hard to look at the picture of me even with no makeup, no sleep, nauseated and bald. It was hard to look at the mask I knew I was wearing. I could see in my eyes the fear and the exhaustion of trying to be strong.

During the time I was going through treatments, I was never bald in public. That would have been too hard. I would have felt naked. People would occasionally ask me what I looked like bald and I would whip off my wig and show them. I acted as if I didn’t mind. I would laugh and announce, “Who knew I had a perfect shaped head under all that hair!” When I showed myself with no hair – I always waited for the reaction. I always wondered if I would scare people or they would see the pieces of me I had hidden behind my hair. People always said I was beautiful without my hair when I did this, I just never believed them. My hair was lovely and it drew attention away from my insecurities.

I often talk about how I lost my hair and how it felt to have the part of me that had always defined who I was, gone in an instant. I have talked about the four different style wigs and how each wig showed a different piece of my personality. The Rachel wig was the proper Cathleen, the Phoebe wig was the badass Cathleen. Zoe was the true Cathleen and Julia was the wild Cathleen. Wearing these wigs and recognizing the different personalities in each, helped me to find who I truly was – to find my authentic self. These wigs were my shield and protectors.

What I’ve never really talked about how it felt to be bald.

My head was always cold.

I had to wear soft knitted caps. Not everything would work on my head, many things hurt. Many things were too scratchy.

I saw a cancer patient when I saw my baldhead.

I felt naked.

I felt fear. I rushed through my days pretending I was fine but when the wig came off and the reality of my cancer looked back at me from the mirror … I wondered if I would die. I wondered if I would be cured. I wondered if I would die never knowing what it was like to be loved for who I was under the hair. I wondered what was my purpose for existing. Would I die and be forgotten, never having make a difference in the lives of others? I wondered if my kids would grow up without a mother. I wondered if they would forget how much I had loved them. I wondered if they would forget me. I wondered so many things that it makes me cry even today writing about it.

Being bald was the most vulnerable I had been in my life.

Being bald changed my life.

I found I was more than my hair.

BaldMe

Bald

January 2007:

They said some people on chemo don’t lose their hair. They also said that chemo patients on Adriamycin and Cytoxan always lose their hair – all their hair. I didn’t want my hair to fall out – who would I be without my hair. My hair had defined me my whole life.

The day after my first chemotherapy I had my long hair cut to shoulder length, then a week later, cut to chin length, then a day later cut into a pixy cut. I wanted some control over how I was going to lose my hair.

I quit thinking about “bad hair days” 10 days ago. The day I had chemo for the first time. The day they told me my hair would fall out on day 10. It was day 10 as I sat on the side of the bathtub; looking at myself and my hair in the mirror. I looked the same. Maybe tired and worried but outwardly, I looked the same. On the inside, that is where I had changed. I had aged. I had lost the belief that everything would always be ok. I knew what it was like to fear death. I knew what it felt like to hear that you had a disease that everyone associated with death. I knew how it felt to acknowledge your own mortality. I never wanted to have that knowledge. I wanted to retain that purity – that innocence. I sat on the side of the bathtub looking at myself in the mirror and contemplated my next move. If I took a shower and washed my hair I knew I would lose a lot more hair. If I only took a bath and tried not to touch my hair very much – maybe I would have hair for another day. Every time I touched my hair, hair fell out. When I woke this morning there was hair on my pillow. There was hair on my shoulders throughout the day. It had begun slowly falling out 3 days ago.

I sat on the side of the bathtub trying to decide if I wanted to just do it or delay it.

It was going to happen.

I was going to lose my hair.

I was going to be bald.

I could not stop my hair from falling out. I could not make the follicles stay anchored in place.   I could control when, where, and how I would lose my hair. I could control who would be with me when I lost my hair. Now was the only time I was strong enough to do it. I stood up; turned on the shower. I made the water hot, scorching hot. I needed to feel my body and know I was alive. I stood in the shower looking at the showerhead, knowing I was alive.

My chest lifted and lowered with my breath. Then I got my head wet. I could feel the water running down my back. I could feel my hair failing to the drain. I looked down at the floor of the shower. I stopped breathing. Within 30 seconds the floor was covered with hair.

My hair. What people had always admired about me. My hair. My shield from criticism because my hair was a part of me that usually didn’t bring criticism. My hair…on the floor…not on my head. I slowly reached up to see if it was all gone. I still had hair! Maybe only some of it fell out. Maybe I would still look the same, the same with only thinner hair. I grabbed the shampoo quickly. Washed the hair that remained. I couldn’t wait to get out of the shower to see if I looked the same. Maybe I would be the exception. Maybe I wouldn’t lose all of my hair. I grabbed a towel for my head. I slowly walked to the mirror. I took the towel off my head.

I screamed.

I quickly covered my head again. My daughter came running into my bathroom. She looked at me and hugged me tight. She held me like a crying baby. She rubbed my back and said, “It’s ok Mommy”. She was 16 years old. We switched roles at that point. She was the mother, I was the child. She held me until I quit shaking. She told me I was strong. She told me I was beautiful. She told me I was her hero. She told me she would always be there.

Slowly I stood up. Samantha was taller than I. She said, “Mommy, let me see”. We took the towel off my head. She looked at me, started crying too and said, “It’s just hair Mommy.   You are still my beautiful Mommy”.

I looked in the mirror at my eyes. Was I still there? There was only hair in a few places now on my head. Most of it was on the shower floor. I went to scoop it up. She said, “stop Mommy, I’ll do it later”.

I looked back at my eyes. I was still there. I thought I would see hopelessness. What I saw shocked me – I saw strength and the desire to remain strong. I had to be strong. I couldn’t fall apart or I would die. I sat down on a stool in the bathroom. Samantha shaved off the last scraggly strands.

We were both crying.

Van Halen

He left me.

He came with me.

He got me checked in for surgery at 6 a.m.

He took the kids to school.

He went to open our store.

He said he’d be back after the store was closed at 6pm.

I told him I was scared of possibly needing a mastectomy; he said don’t worry about that. If you need one, we’ll get you some hooker boobs.

Who says that to their wife when she has breast cancer?

I am scared.

Why am I here – alone?

I’d rather be alone than with him – today.

But I am scared.

Scared of the hospital.

Scared of the surgery.

Scared of the unknown.

I want to know that I will be ok.

I don’t want to know that I won’t be ok.

The surgeon plays Van Halen during the surgery.

What does that mean?

When I met my surgeon and my lumpectomy was scheduled, I asked him what music he listened to when he was operating. He was caught off guard. He was a nice but reserved man. I could tell he didn’t open up to others easily or at least not to his patients. When I asked about his music, he looked nervously around the room as his nurse laughed. I looked at him and said “don’t tell me you play head banger music or hard rock when you are doing surgery!” His nurse smiled and told me he listens to Van Halen, I looked at him, laughed and said; “well…you better bring me a shirt before we do this.”

He did. The morning of my surgery, he walked in and threw me a Van Halen shirt.

The day of the surgery was long. There were delays. I wanted to get it over with, but I knew they would get to me as soon as they could. I worried about me and I worried about the patient they were operating on that kept me delayed.

I remember the waiting.

I remember being alone.

I remember feeling like I didn’t matter.

I remember crying because he left me alone. I remember thinking how he could have closed the store for just that one day… for me. I remember knowing that he never would.

I remember being cold.
I remember the pain of the all the things that must be done before the lumpectomy.  I remember the IV insertion, I remember the placement of the locator needle in my breast and I remember the pain of the injection of the dye. No one warned me until I got in there of the searing pain of the procedure. They had to inject dye into me to find the sentinel node. I remember having to lie still as they did this procedure. I remember tears streaming down my face as I fought to hold still. I remember feeling scared and so very alone.

I remember needing to go pee all the time. I always have to go pee when it isn’t convenient to go pee. Lying in the hospital bed, in that gown, with an IV. All I can think about is I have to go pee. I just went. I have to go again. What if I pee when I am having surgery and I embarrass myself? Does that happen?

My surgery was supposed to be at 7:30 a.m. It is 11a.m. I am still alone. They were not expecting the delay so they did not have a place to put me. I am in a makeshift hospital room with a big needle sticking out of my breast. In this gown.

That is where Carol and Michele find me.

I had never been so glad to see anyone in my life.

My two dear friends – Carol the nurse and Michele the yogi.

Carol, the practical one that tells me to chill out, I’ll be fine.

I can see in her eyes that she is scared for me.

Michele is the mothering, crazy-fun one that cries with me.

She is scared for me too.

They are here.

I am not alone.

They make me laugh.

“Why do you have a wire sticking out of your boob?”

“Why do you keep going to pee? You just went.”

They hug me.

I’m not alone now.

They are coming for me.

They are rolling me towards surgery.

The nurse is smiling at me and telling me how lucky I am to have Dr. Frasier for my surgeon, he is the best.

The room is so cold.

Why is it so bright?

I don’t hear Van Halen. I guess he waits until I am out before he turns on the music.

There are so many people in here.

The anesthesiologist is telling me to count backwards from ten.

I wonder if I need to go to the bathroom one more time.

Chemo

Chemotherapy. That’s poison. You have to pump poison into my body? That is the best drug you have now to make sure all the cancer is gone? Poison … can heal me? I have to have more surgery to have a port, a permanent IV port, inserted into my body. Why does the surgery for the port hurt worse than the lumpectomy did? When do I start chemo? Can I wait until after Christmas?
I don’t want to ruin Christmas for my kids.
January 4th.
Why is this the only treatment? Why isn’t there a cure for cancer? Are the pharmaceutical companies hiding the cure so they can continue to make money on chemo drugs? I walk slowly down the hall towards the larger chemo room, A room with recliners and TV’s attached to each recliner. I don’t want to be in the big room. In the big room, there is group fear I guess that is like group therapy only more desperate. In the big room there is commiseration, people shooting up chemo drugs, talking about dry mouth, where to find the best knit caps, what their last chemo was like, how long they were sick after it. “Cathleen, you could help comfort them,” the nurses tell me. I don’t want to. I want to be alone… alone with my fear…alone with my anxiety.
As I walk down the hall, I notice the meditation room on the right, an oasis on the way to the chemo room. I never go into the meditation room for fear it would mean all of my hope was gone but I am glad the room is there, I get peace and calm just by passing it on the way to the poison. The door to the chemo room is ahead of me. I have to be buzzed in. Why? Are they trying to keep people in or out? Out I guess. I don’t have to be buzzed out. I slowly reach my hand out towards the door. I hear the buzz. I don’t want to walk in. Do I have to? Why did today have to get here so fast? Will it hurt? Why is my husband so indifferent? Why isn’t he holding my hand? Is he scared or does he just not care?
It is 7:30 in the morning. I asked to be first. There are private rooms around the sides of the chemo room. Private rooms are on a first-come basis. I want to be alone. I don’t know what to expect. I didn’t ask. They would have told me if it was painful, right? A nurse greets me. Her name is Maria. She starts walking me towards the recliners. “Can I please have a private room?” I ask. She holds my hand and says I can be wherever I feel the most comfortable. The room is nice, recliner for me, a recliner for my caregiver, and a TV on the wall. Maria asks me to sit down. I have to have two different kinds of chemo. She begins the Cytoxan first. I watch as it moves down the clear IV tube into my port. I can’t take my eyes off of it. Maria tells me they are giving me some steroids to help with the nausea and I would be getting a prescription for Zofran to help with nausea at home. I am not really listening to her. I am watching as the clear poison makes its way towards me.
I glance out the window. There is a parking lot full of cars. Where are the people going. Are they going on with their lives while I am having chemo? My husband is reading a book and watching Fox News. Why isn’t he holding my hand? The poison is now in my body. I don’t feel different yet. I’m not nauseous yet. Why is this happening to me? What if I die? Who will love my kids if I die? Will there be anyone to remind them how much I loved them? I sit there in silence. On the outside I’m still. On the inside I’m screaming, I’m scared and I’m defeated. I am holding a book. I can’t read. I can’t pretend this is a normal day. I don’t remember how long it took for the chemo bag to empty. I thought both drugs would be in the same bag. Maria came back in to remove the IV bag. She said she would be back with the Adriamycin. I didn’t understand that there was a difference. She came back with a huge syringe. It was bright red. It looked like death, bright red, poison that could eat away my skin if it got on me. I asked her why she wasn’t going to hook it up like the Cytoxan. She had to manually, slowly administer the Adriamycin. I watched her for a few minutes. She sat beside me, with the poison. I had to look away. I looked at my husband, across the room. He looked up and said, “What’s wrong with you?” “Nothing,” I choked out. I laid my head back and looked out the window. Why am I crying? It doesn’t hurt. Why are the tears rolling down my face? Normally, I would have been chastising myself for crying. Today…in the cancer center…in the chemo room…in the recliner…I let the tears flow. They flowed with fear. Fear for my own life. Fear for my children.
I silently let the tears flow. I didn’t want to be noticed. I cried. After a few minutes I noticed Maria. She had stopped administering the chemo. I looked up at her face. She was crying with me. She held my hand and told me to let her know when I wanted her to begin again. I waited. There were no more tears – for now. Maria smiled at me and finished her work. The cancer center was such a scary place but people like Maria eased the fear. As she finished
Samantha came running into the room. She took off from school to come check on me. She took one look at my face and hugged me. She squeezed herself into the recliner with me.
Another thing they don’t tell you – when you go to the bathroom after having Adriamycin – you pee red.