Sunday, September 26, 2010

Sarah's Words From Her CaringBridge Today

I have cut and pasted Sarah's CaringBridge post from today. It is a beautiful post letting us go with her into her thoughts and feelings.

This picture was taken on April 9, 2010. She was at karoake, which is one of her favorite things to do.

She had had her bilateral mastectomy and had not yet started chemo. This is her real hair.

She is my daughter, my first born child. What a privilege I was given. I get to be her mother.

Sunday, September 26, 2010 10:34 AM, CDT

Breast cancer.

I went to a Comfort Club meeting yesterday. I love Comfort Club. It’s very… calming (and comforting) to me.

There is something about being in a room with other women who know. Who know what it’s like to hear “it’s cancer”. Who know what it’s like to wonder “Am I going to die? What about my family? Will my children remember me?” Who know what it’s like to have to decide: Lumpectomy? Mastectomy? Breast reconstruction? Many of whom have had the experience of losing their hair. And all the feelings that go with that. Who understand what chemo side effects are like. Who know what it’s like to be looked at differently.

I like being in a group of women who just understand. I can listen to their stories and learn from them. Although we share a common diagnosis, “breast cancer”, I have yet to meet another woman who has had the same experience as I have. We share much, and yet our experiences are different.

Breast cancer.

As I was driving home yesterday, I thanked God for my breast cancer. I do not believe that God gave me cancer. I do believe that all things work for good for those that love God, and have been called according to his purpose.

I feel like I am where I need to be in my life now. I feel like I have had (another one) of the big experiences I am supposed to have. I feel like I see a little clearer now, have more understanding and compassion. And I feel like I can help people in a way I couldn’t have before.

I feel like I have a mission. Or at least a direction. I want to help other women who have been diagnosed with breast cancer.

And yet I remind myself that I am still going through it. It’s only been 7 months.

And I am still going through it. In fact, there is much that I haven’t gone through. I’m not done with reconstruction. My hair hasn’t grown back fully. And…. I still have so so many feelings that need to come out. Tears. Anger. Confusion.

Breast cancer.

One of the things we talked about at the meeting yesterday is who were we before breast cancer, and who are we because and beyond breast cancer. I could answer the first two. I know how I was different before, and now, because of. But I’m not beyond breast cancer yet. I’m still in the middle.

It’s helpful for me that there are women in the group who are a few years out. Who were diagnosed years ago. They are still in the group. They still have feelings about their breast cancer. They are survivors. And I “look up” to them. I really like knowing breast cancer survivors. Who have gone through what I’m going through and have gone through what I have yet to experience. It comforts me.

Breast cancer.

Breast cancer.

What could have easily been seen as the worst thing that has ever happened to me is probably going to turn into the best thing that has ever happened to me.

Who knew?

Let’s do this.

Thursday, September 16, 2010

Thoughts About Today....First Blood Draw Without The Port

(Gershwin's Lullaby) Please click to play.

Sometimes, I think only Sarah and I know exactly what it is like.

Sometimes, all we have to do is look at each other
and say a word or two.

Today, when we met at the valet service at Piper,
we kissed and hugged and then she said....

"It's not going to get any easier is it?"

I said, "No."

I wish I could find words to explain it.

It isn't a thought.

It is a feeling.

As we stood waiting for the elevator to go up to oncology,
we talked with a young woman wearing a cozy....the little
knit cap that is worn to keep your head warm.

We learned she had had a recurrence.

She was two years out.

I wanted to ask her questions.

There wasn't time.

I had to work hard to make myself stay in the moment.

I had to fight off the "what if."

Sarah is doing well.

Sarah is cancer free.

Today, Sarah got her first blood draw without her port.

She said it wasn't as bad as she thought it would be
but that wasn't saying a lot.

Sarah brought me a DVD that was made by twelve breast cancer
survivors from Hastings, MN.

She thought maybe I could watch it in her van before we had to go our separate ways.

She had seen it.

It moved her to tears.

I said, "No, I have to drive."

She said, "I know."

She knew it wouldn't be a good idea.

I said, "You are not your mother."

She understood.

She just wanted to watch it with me.

I understood.

We don't need to say many words these days.

Our cars were brought around.

We kissed and hugged for a long time.

She said, "Thank you for coming with me."

I said, "I will always come with you."

And, I will.

I will.

Saturday, September 11, 2010

The Story Of The Port...My Story

(Dante's Prayer) Please click to play.

Judy holding Sarah's port in the palm of her hand

The port was starting to bother her. She started to feel a sharp pricking sensation.

It was implanted months ago. It was one of the first things that was done to get her ready for the numerous blood draws and her four chemo infusions. It meant she didn't have to have her arms and/or hands used for these things. It meant she didn't have to get bruised.

It was a good thing.

It was a relief.

It was a gift

It was a friend.

She thought she would be able to keep it in for years. She wanted to keep it in. It seemed like a no-brainer.

You see, for the next two years, she will be having her blood drawn every three months. For the next three years she will be having her blood drawn every six months. That totals five years of frequent blood draws.

They, (what a word) ... "they" means the oncologist and the oncology nurses will be looking for "readings" that will indicate whether or not there are loose cancer cells in her body.

The blood draws are necessary. They are a part of her treatment now. The blood draws, along with the drug Tamoxifen, which she will take daily for the next five years, are supposed to reduce her chances of recurrence from 19% down to 10% or lower.

She wanted to keep the port in.

We learned the port has served its purpose now. We learned the risks of keeping the port in outweigh the benefits.

He, (the oncologist) didn't give her a real choice. He said it had to come out. He pretended to give her a choice. He said if she wanted to keep the port in, he would skip one of every four blood draws. HA!

Did I mention no-brainers up above?

He got Sarah's attention. No, she would not skip any blood draws to keep the port in. From the beginning, Sarah has done everything she could to deal with this thing called cancer. She would have the port removed and do the blood draws without it.

It had started to bother her. It began to feel like a good thing to have it removed. The date was set.

September 9, 2010 came to be known as "deportation day."

I went with Sarah to the doctor's office.

Up until now, this was an easy post to write. I thought...I am doing really well here.

Now, I am back in the doctor's office because that is really where my story starts.

Sarah and I both went into this day feeling like it was going to be a non-event. We both had to talk ourselves into getting back into the "place" of dealing with all this. We have had some "time off."

We have had a break. To put it my way....we have been able to run and skip and jump and play. "It" wasn't the focus all the time. Give or take the reality of seeing Sarah's hair growing back and the addition of Tamoxifen to her daily routine, life has had a semblance of normalcy to it.

I believed having the port removed would be ok. I believed the procedure would go smoothly. And, it did, for the most part. Sarah required six to eight shots of novacaine to numb the area. Those hurt! Other than that, it was ok.

We left the doctor's office and went to pick up our cars at the valet service. While we waited for the cars to be brought around, she told me the doctor had asked her if she wanted to keep the port.

At first she said no. Then she said yes.

She asked me, "Do you want to see it?"

I said, "Oh, yes!"

It was in a little container.

She took it out.

I said, "Can I hold it?"

She said, "Yes."

She put it in my hand.

It was made of metal. It felt cold in my hand.

I looked at it.

I saw the thin white tube, with little holes in it, that came out from the metal part.

The tube had been in her vein.

And, I closed my hand over it.

It was then that I felt the tears.

It was instant.

They burned in my eyes.

I didn't know what they meant.

I didn't know what to name them.

I said to Sarah, "I just had a feeling."

She said, "I'm not looking at you."

She was having a feeling too.

I was the one who said it out loud.

Neither one of us knew what it was.

She said, "We're going to lunch."

I said, "Oh, yes."

We drove in separate cars.

It was in my car that I realized what the feeling was.

I drove straight into understanding what touched me as I held my daughter's port in the palm of my hand.

It was the first thing I have been able to touch that has helped keep my daughter alive.

I could wrap my hand around it.

Sitting in the restaurant, Sarah talked about her feeling. She hadn't figured it out yet.

I watched her face and listened to her as she tried to sort it out.

I said, "I can tell you what that feeling was for me if that would help."

She said, "Ok."

I told her about it being the first thing I have been able to touch and hold....touch and hold something that kept her alive.

Her eyes flooded.

She said, "Yes."

Sometimes, I can't get close enough to her. I think I could be inside her and it wouldn't be close enough.

She is my daughter. I am her mother. She has been inside me. She is still inside me.

Sarah and me on deportation day

Thursday, September 09, 2010

I Wish

I wish I could say in a short time and a few words all that I feel

But, I can't.

Perhaps, I will write tomorrow.


Today was "deportation day."

The port is out, but not gone.

I touched it.

And, I felt.

Sunday, September 05, 2010

My Dad's 98th Birthday Party


My dad

He was born September 1, 1912. They named him Alfred, but he has always gone by Al.

He doesn't care for the name Alfred. That is ok. Al works just fine.

He is my father. He is the man who taught me what men were like. I learned to trust men. I learned that men were nice to be around. I learned that men were gentle and caring and patient. I learned that being a girl was nice.

He used to go shopping with me while my mother bought nylons at Dayton's.

We would walk through the girl's clothing department and he would look at the mannequins and say to me, "That would look really nice on you Judy." I didn't have to have those things. It was just nice to hear him say it.

One time...I was a senior in high school and had been asked to the prom. I had already been to the prom before, and even though I would have liked a new dress, I didn't need one. But, once again, while my mom was shopping for some things at Daytons, and my dad had gone with her this time, I went looking for prom dresses...just to try them on.

I shopped at a small specialty ladies shop across the street and found the most beautiful dress. I took it to try it on in the most amazingly big and beautiful dressing room.

The dress was so pretty. It had tiers of soft, aqua fabric that moved when I walked. I twirled and twirled in that dressing room and I just had to show it to my dad. I asked the lady if she could hold it for me just until I could bring my dad back to see it. That was all I wanted. I didn't have to have it.

I brought my dad to see the dress. He sat in an unholstered chair just outside the dressing room. I went in and put the dress on.

And, when I came out, I saw my dad's smiling face. We left that store that day with the dress.

Happy birthday Dad! I am a lucky girl to have had you in my life. I am a lucky girl to still have you in my life.

Thank you for being the kind of dad you are and for teaching me so many important things about life.

I love you!

Your daughter,

Below are some videos from my dad's birthday party. Please come on in, sit a spell, and get to know the man I get to have as my dad.

Welcome to my world!