Cut Loose

When I was going through treatments I went in weekly to have my blood drawn. They were checking my white blood cell count constantly. After chemo was finished, I still went in regularly to get my blood drawn.

Weekly.

Bi-weekly.

Monthly.

Every three months.

Every six months.

Once a year.

Once a year with my mammogram.

Each time the doctor told me I didn’t have to come back for longer period of time, I should have felt joy.

I didn’t.

I should have felt relief that I was healed.

I didn’t.

Was I cured?

Do you really ever say you are cured of cancer? There is no cure, so what do you say?

I don’t know.

Every time the distance between appointments was lengthened, I was scared.

What if it came back?

What if they thought they got it all but they didn’t and if I came back in three months it might be too late.

What if the next time they drew blood

the next time I had a mammogram

the next time I saw the doctor

What if …

I thought about the “what if’s” frequently during treatment and the first few years after. I went to see my oncologist for my yearly check-up last year and he told me he could cut me loose. I didn’t need to see him anymore. My BRAC genetic test for breast cancer was negative. The results of my oncotype test showed less than a 1% chance of recurrence. He felt comfortable not seeing me anymore.

I sat.

I didn’t breathe.

I didn’t blink.

I felt sick at my stomach.

It was irrational but I felt the same fear I felt when I was initially diagnosed.

He watched as I processed what he told me.

I didn’t speak. I experience fear each year when I go to see my oncologist but the visit had become my security blanket. Dr. Davidson had my back.

Cancer had been a part of my life since November 13, 2006. It will always be a part of me. Cancer will not define who I am but cancer changed me. It is hard for me to not look for the positives in all situations. When I was diagnosed with breast cancer, I did not look for positives. As I moved through treatment, I had to be positive.

I looked at Dr. Davidson.

I am positive my cancer is gone. I was also positive I was not ready to be set free.

He smiled at me and said he would see me in a year.
I had breast cancer.

I don’t have it now.

Maybe next year, I’ll be ready to be cut loose.

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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.

Swan

Lone swan on the lake

I can hear her call

But I can’t see her

She seems distraught

She keeps calling out into the thick, veil of the morning fog

 _________________________________________________________________________________________________________________

I woke up this morning, started the coffee, turned on the computer and opened the curtains in the living room.

As I pulled back the curtains and looked out at the lake,

I was mesmerized by the thick fog covering the lake.

I quickly poured a cup of coffee and went outside to sit.

The air was crisp and fresh.

The air felt thick.

I seemed to be able to feel it entering my body as I inhaled.

It woke up all the parts of me that were still groggy.

My mind cleared, my eyes took in everything around me and I could breath.

I could feel my lungs reaching full capacity with each inhalation.

It felt great to be alive.

The sounds of the morning surrounded me; crickets, frogs, birds and a lone swan.

I sat on my front porch watching and listening to nothing in particular. The fog on the lake this morning was the thickest I have seen.

I couldn’t see the water at all.

As I sat staring at the fog, the swan came near the edge of the lake – right in front of where I was sitting.

The thick, white fog framed her as she moved,

moved back and forth in front of me.

She sounded desperate, calling out into the fog.

She continued to disrupt my peaceful morning sounds with her cries but at the same time, she seemed to connect with me.

I had to remain here with her.

How long did I sit there? I don’t know.

The day was beginning.

The fog was lifting.

She made one last pass in front of me, and then moved off into center of the lake.

As the fog dissipated, I began to see the water.

It was flawless.

Still.

There were reflections of the surrounding houses and trees in the lake.

As the swan cut across the lake

everything became clear.

She swam with ease and grace.

She calmed.

She was a peace.

I inhaled –

inhaled the desperation I had felt earlier

then forcefully exhaled.

I calmed and I was at peace too.

The Call

The phone was going to ring. I could feel it. I could feel the energy in the back room of our store. My heart was like those hearts you see in cartoons.   It felt like it was beating out of my chest. It felt like there was a long pause in between beats. Now my heartbeat was in my throat. I can’t breathe. I don’t know how much more of this I can take.

The nurse said they would call on Thursday. It was Thursday. It was 5:00pm. Did they forget about me? I wanted them to call and relieve my stress. I didn’t want them to call and confirm my fears. I wanted them to call and tell me it was nothing, that I was fine. I didn’t want them to call and say the “C” word.

Call.

Don’t call.

Call.

Don’t call.

The phone rang. I don’t’ want to answer it. I can feel the answer already. I don’t need to answer I already know.

Ring…

“Hello, This is Dr. Frasier’s nurse”.

Why can’t I breathe? Why can’t I say hello back to this nice woman? Why did I just grunt out a strange sound, kind of like …lo? She is telling me she stayed late to get my test results. “I knew you would be worried and anxious to hear the results of your biopsy”. She took a breath, “ I am so sorry to have to tell you that the biopsy showed cancer”.

I am numb. I think this must be how it feels to be shot by a gun. Her words are the gun. She feels so bad. My voice is quivers. Why am I so fragile right now? I am scared? I feel like I am watching this scene from another place, a safe place. A place where cancer doesn’t exist.

I tell her I want to see the surgeon as soon as possible and I want to have the surgery as soon as possible. I have an appointment with the surgeon Tuesday.

She says there are no openings for the surgery, if that is what I decide to do, until after Thanksgiving. I can’t wait that long. I can’t have this in my body that long. She tells me there may be an opening next Friday if she moves a few things around.

I’ll take it.

You need to talk to Dr. Frasier first. Ok, I’ll talk to him on Tuesday and we can do the surgery Friday. She says ok. She says again that she is sorry. My voice is still trembling. I try to force out a pleasant thank you and hang up. I sob. Can you call it sobbing if you have tears coming down your face but you aren’t making any sound?

I don’t make sense as I try to tell my husband what the nurse said. I want him to hold me and comfort me and tell me I will be ok. I don’t remember any comforting words he may have said that evening. I don’t remember him holding me. I only remember how I felt. I always thought I was invincible. Cancer doesn’t happen to me. Cancer happens to other people. It is something I would read about but never encounter. Cancer is a death sentence. Cancer = Death.

I cry. I need a tissue for my nose. What am I going to tell my kids? They will be so scared. They found out two months ago that their grandmother has pancreatic cancer. She was not doing well. I know one thing: I don’t want to die.

Please hold me. Please tell me I am going to be ok. Please.

What do you say?

Cancer is evil.
It is ugly, it is vile.
It is more feared than …
a dark alley
snakes
spiders
… they aren’t even in the same league.
Cancer causes a reaction. Most people have been affected by cancer. People fear that cancer will eventually happen to them or to someone they love.

People don’t know what to say to someone with cancer. I didn’t know what to say before I had cancer and I’m often not sure what to say now. I had a sweet lady come up to me after my diagnosis and ask me how long I had to live.

Everyone responds differently when they get a cancer diagnosis. There is fear but the way people live after a cancer diagnosis is different. I responded to my cancer diagnosis by staying even busier than I had been before.
I was afraid to slow down.
I was afraid to ask for help.
I was afraid to let it sink in that …
I had cancer.
I still struggle to say that.

Looking back now I know I stayed busy because if I slowed down or asked for help, I would have fallen apart. I would have had to acknowledge that I had cancer and I preferred to deny the disease. In my mind acknowledging it gave cancer more power over me. I was not sick. I did not want to be pitied or treated as if I was dying.

People often don’t know how to react or what to do to help. I had a friend recently tell me she didn’t ask if I needed her because I seemed so strong. She asked me what would have helped me when I was going through all the treatments. I thought about her question and before I realized what I was saying I said, ” I would have loved someone to have come over, brought popcorn and a movie and made me sit down.” I didn’t slow down or sit down and I don’t think I even exhaled at all during the seven months I was going through surgery, chemotherapy and radiation. I am not sure I would have slowed down then but that is what I needed. I was surrounded by many wonderful friends during that time and it would have been harder to go through those months without those wonderful women. My daughter was my caregiver but I never wanted to put more on her so I kept much of my fear and needs to myself.
What did I need?
I needed someone to hold me.
I needed my breast cancer to be acknowledged but not pitied.
I needed to feel like I mattered.
I needed to feel like I was not an annoyance.
I needed to feel like I was not being ignored.
I needed a husband that treated me like he cared.
I needed to feel like I wasn’t alone …
but I was alone with my cancer.

When someone asks me what to say to someone that is going through cancer that is a hard question. Each person responds differently and needs something different.
It is important just to let them know you care…
to let them know you recognize they are going through something scary…
to let them know they matter and are not being dismissed as already dead.
Then they don’t feel quite so alone.