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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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.

I am different now…

I’m different now.

After my diagnosis

After the mammogram

the biopsy

the lumpectomy

the surgery for the port

the chemotherapy

the radiation

the anti-estrogens

the weekly blood draws

After the dry mouth

the dry, grayish skin

the stomach issues

the nausea

the constipation

the fatigue

the memory loss

the hair loss – all over my body

the fog

After all the cancer took from me…

Cancer took my health, my looks and my belief that I would always be whole. Cancer took all that I thought I was and I was left stripped of the person I was before. I was left with a new beginning… a fresh canvas and I got to decide what I was going to pick back up.

I have often said cancer saved my life. Being torn into pieces by cancer gave me a new look at myself as I picked up the pieces of me. Often we hold on to things that no longer work for us. We store things to be saved for use at a later time…that time doesn’t always exist after cancer.

I was still a nice person after my cancer diagnosis. I was still a caring, giving person. I looked almost the same. When I looked closely at myself though, I saw a different person. I was no longer willing to accept many of the parts of my life. I was no longer going to just let life happen around me. I was going to live every part of my life. I often hear that same thought from other cancer survivors. They had life changes after cancer.

For me … I took hold of my life. I no longer let others decide how I would live my life.

I was in a bad marriage

… I left.

I was separated from my family

… I moved.

I wanted to go back to school

… I went.

I wanted to show my children a happy mom

… I did.

I wanted to write

… I wrote.

The hardest part of taking charge of my life was believing that I could.

Biopsy

“Here, put this gown on and leave it open in the front,” the nurse tells me.   I take off my clothes and neatly fold them and put them on the chair in the room. I put my bra in between my pants and sweater so no one will see it. I don’t know why I always do that. I know they have seen bras before. The nurse said this will just feel like a strong prick and I will be finished and on my way soon. I like the picture of the meadow on the wall. “Are you ready,” the nurse asks. It’s cold … or is that fear shaking me from inside my body.

Oh my gosh! That didn’t feel like a strong prick. That didn’t feel like a hard pinch. That felt like a knife gouging my breast. It felt like someone took a knife held it over a fire then quickly jabbed the tip of it into my breast. I am lying on a table that has two holes in it for my breasts to fall through. I am in one of those dreadful gowns, the gowns they so love to put you in. I am lying face down with the doctor underneath the table. I am vulnerable. I am exposed. AND I’m not supposed to fuckin’ move! I am scared. Please don’t find anything. Please say it was nothing. Please be benign if it is cancer. Please. Please Lord.

Isn’t there a better gown? One that is soft. One that doesn’t scream “someone” else wore this. Is that “someone” ok? Is that “someone” still here, in this gown? Does this gown hold some of those other patients’ fears in its fibers? Why isn’t there a different gown? Why aren’t they done yet? Why do I have to try to be so strong? Why didn’t I let someone come with me? Why didn’t anyone insist on coming with me? Why didn’t my husband realize I needed him today.

I am alone…in this gown.

The Knitted Cap

I noticed her because she was wearing a knitted cap. Not because she was so pretty. Not because of the smile she had plastered in place, the smile that didn’t quite reach her eyes. She was the mother in a perfect family portrait, but that was not what drew my attention. What I could not tear my eyes from was the knitted cap on her head.

We were so exhausted from the fun of Disneyland; the airline flight, eating out, laughing, walking, tons of walking…the magic of Disney. This was our first Mother/Daughter trip in 8 years – our first trip since…the knit cap.

It felt good to be back in Tennessee. My daughter, Samantha, laughed as I wandered around the parking garage at the airport pushing the key fob, hoping my car would tell me where it was. Found the car. It was still there. It was the same. We loaded the car with our luggage. Samantha had put together a playlist for our trip, songs we loved to sing. As I backed the car out, she punched in NSYNC. We couldn’t stop laughing as she sang every word to Space Cowboy perfectly. Coming up for air, we realized we were famished. We stopped at Einstein’s Bagels. We walked up to the counter and ordered coffee and a bagel. Laughter. Music. Mother/Daughter time. Memories.

Then I noticed Her. I noticed the beautiful woman sitting beside us. She was thirty-something, had two gorgeous daughters with her (about five & seven) and her husband. I couldn’t give you many details about her looks. I didn’t notice the color of her eyes. She had porcelain skin and a slim build. But I don’t’ remember the shape of her face. I noticed her because of the knitted cap that covered her head – her baldhead. I wasn’t hungry anymore. I wanted to go hug her and tell her she would be ok, ‘cause I was ok. I wanted to tell her I understood how scared she was. I needed her to know that.

I felt empty watching her. The memories of what I had gone through came rushing back. I had a hole in my stomach, a void, a fear. Fear for myself and for her. I felt as though I had failed her and all others going through cancer. I failed them because I had not shared my story.

I glanced up at Samantha…she had a tear in her eye.

A Beautiful Soul

Most of my life I have heard – you are such a beautiful girl.

You have such a pretty face.

I look in the mirror – where is this girl they are all talking about.

The woman I see looking back at me is insecure.

The woman staring right through me is scared.

She is lonely, terribly lonely.

She feels betrayed.

She feels she is to blame for causing pain.

When I look back into that mirror I see a woman who has had to be silent to survive, though it is so not in her nature.

I see a woman who hates confrontation so much that she has allowed herself to become a victim.

I see a woman who despises herself for allowing her soul to be victimized.

As I stand here in front of this mirror now I look closer.

I look deep into those hazel green eyes.

I am searching for the girl in the woman.

As I look into this woman’s eyes now I see hope.

I look closer – I see strength. In this strength I see desire.

Desire for change. Desire for love. Desire for happiness.

I see the girl that used to live inside this woman. The girl that was told, “If you would only lose a little weight you would be beautiful, because you have such a pretty face”. I see the girl that was told by men she was pretty only to be used and destroyed by them. I see the girl who believed in love and hope and happiness.

I look closely at this beautiful girl and watch as she sheds the burdens she has allowed to gather around her and pull her down. I look closely and finally I see beauty.

I see a beautiful soul.