Tuesday, November 23, 2010
For two years following Sarah's last chemo treatment, she will have her blood drawn every three months. This blood draw checks things like her hemoglobin, platelets, blood cells and, most importantly, a cancer marker.
The cancer marker is ideally supposed to be below a certain number, but even if it goes up, it doesn't necessarily mean that her cancer has returned. But, they would take that marker seriously and watch her more closely and perhaps do some more testing. So far, her cancer marker has been good, and we should find out the results of today's blood draw tomorrow afternoon.
Sarah was in good spirits when we met. She fully expected today's appointment to be a non-event, and it really was. She is doing well on the Tamoxifen...no side effects...and she is slowly beginning to sleep a little better. Her hair is getting longer and it is so curly. How nice it is that she can say, "Look at my hair. It is sticking straight up. I can't do anything with it!
Below is a picture of Sarah, my other daughter Kara, and me at a wonderful Christmas event held at Kara's church. You can see how long Sarah's hair is just a week ago. It was such a fun night that we are going to make it an annual event. We are all starting to feel that life is taking on some normalcy and routine. And, we are having fun!
Fun....f u n.........f u n....we are having fun. God has granted us so much to be thankful for. Looking back we wonder what this year was all about. We know we went through it. We know there is a purpose. It has changed our lives. And, we are looking toward the future and living in and loving the present.
We are taking one day at a time, planning a cruise for Sarah's one year anniversary of being cancer free in March of 2011 and never forgetting how fortunate we are to all be together. When we get the results of her blood draw, I will let you all know!
Monday, October 18, 2010
What would we do without children? Today has not been the best of days, (Sarah goes in for her final reconstruction surgery tomorrow morning and there is normal anxiety and other feelings that remain undefineable) but...but...but....God does provide us with bright spots that make us smile and laugh.
Case in point....
Here you see two pictures of Sarah's 5 year old son, Derek, and his friend, Mary Francis. They are the best of friends and Derek had Mary Francis over to play today after school.
Sarah overheard Derek ask Mary Francis if she wanted to play house. Mary Francis said, "Yes, I will be Mrs. Robinson."
Derek said, "And, I will be Mr. Lofquist."
Mr. Lofquist was Davey's, Sarah's 7 year old son's, kindergarten teacher.
If only they could understand why Sarah left the room so she could laugh and call someone to share the funny story.
I got to be that person today and I thanked God for the bright spot he put in my day.
Wednesday, October 13, 2010
When you are finished reading this post, please play the song. Or, play it as you go. It doesn't matter. Just play it. Sarah has written a powerful message.
What is posted here is Sarah's response to an article she read in Better Homes and Gardens magazine. I encouraged her to send this letter to the editor. If even one woman's life can be saved because of reading this, then it will be successful!
From here on what you read will be Sarah's words.
My friend Lynn (also a breast cancer survivor) told me about this article in the October issue of Better Homes and Gardens. This is a copy of the Letter to the Editor that I sent.
In response to your article Testing, testing, in your October 2010 issue, I have some concerns. I realize the article was simply restating what has already been published, and was trying to show both sides of this issue. However, women’s lives are at stake.
Since you published this article, I would have appreciated having different quotes highlighted. For example: “In terms of cost, availability, and accuracy, mammography is among the best tools for detecting breast cancer.” And “…In both cases, the lifesaving benefits of screening outweigh any potential harms.”
And I have a question: You printed that the task force looked at the NUMBERS and concluded that mammograms deliver more minuses than pluses? Did I read that right?
So if 1903 of my 40-year-old friends and I went in for mammograms, and I was the only one that had cancer, the task force concluded that routine mammograms aren’t worth it? Not enough of a reason to screen us all? Saving my life is not reason enough to screen the rest?
WHO IS ON THIS TASK FORCE?
Any cancer survivors?
Anyone who’s a co-survivor?
Anyone who has lost someone to cancer?
They looked at the NUMBERS? How about looking at the faces of the women whose lives have been saved because of routine mammograms and self breast exams? Don’t forget to look at the faces of their families, too. Especially their children. Because these are the faces who may have lost their lives, or loved ones, had they followed your guidelines.
I was diagnosed when I was 41. Because of a routine mammogram. I had 2 small tumors in my right breast. They could not be felt. Even when the doctors knew where they were. I was diagnosed at Stage IA.
I did not have any risk factors. What if I had waited until I was 50? And then thought to myself, if I can wait until I’m 50, and I don’t have to go every year, I can wait until I’m 51.
Well now, I probably would have felt something by then. Hah! Except that you also discourage self breast exams. I wonder how advanced my cancer would have become if I had followed your guidelines? When would I have been diagnosed? And how?
I shudder to think about it.
The numbers just didn’t add up?
Let me give you MY numbers. 41. 2. 3. 6. 4. 1.I was 41 when I had that fateful routine mammogram.
They found 2 tumors.
I have 3 boys.
They were 6, 4 and 1 when I was diagnosed.
And those numbers add up to routine mammograms every year after 40 being WORTH IT.
For my children.
For my sister.
For my mother.
For my friends.
And Gayle, for you, too.
Please take this into consideration the next time you publish an article about breast cancer. Women read your magazine. We could use your help in advocating for our health.
Breast cancer survivor
Monday, October 11, 2010
Sarah said something to me yesterday.
She said, "Oh, I keep forgetting to tell you something."
I said, "What?"
She said, "What day was I supposed to be born?" (She was born early on February 23)
I said, "You were supposed to be born on March 12."
She said, "March 12 was the day of my surgery! I was reborn on March 12!"
I smiled and said, "Yes, you were!"
You know, I think that is exactly what it felt like the the night of her surgery. I remember waiting in the family lounge the night of her bilateral mastectomy. I remember seeing Dr. Bretzke come toward us to tell us how surgery had gone, and whether or not they had gotten all the cancer out, and if the nodes were clear.
I remember Dr. Bretzke's words. We got everything. We took two nodes. Both were clear.
She might just as well have handed my newborn daughter to me.
March 12, 1968.
March 12, 2010.
Both days I was handed my beautiful daughter.
Tuesday, October 05, 2010
She, all of a sudden, realized she is going to have surgery this month. Real surgery. Put under..all the way out....surgery.
It isn't like she didn't know that was going to happen. "It" has been on the calendar for some time now. She knew "it" was going to happen.
"It" is her final reconstruction surgery. "It" is the final step in this cancer journey we have been on, give or take Tamoxifen and blood draws for the next five years. "It," as she writes about it in her CaringBridge site, will make her as good as she is going to get. And, "it" will not be a return to her old body.
She didn't know she would feel like she does. She didn't know she would miss her old breasts. She didn't know she would miss her real breasts. Eight months ago the removal of them also removed the cancer. She didn't give it a second thought. She said, "Take them off!"
She didn't look back. She would not make any other decision if she could do it again. She did it because she has children. She did it because she wanted to live, whatever it took.
She just didn't see her feelings about "it" coming. She was taken unaware. They came while she was busy living her life.
Thank you God!
Saturday, October 02, 2010
Sarah, Davey and Derek wanted me to meet them out at the cemetary in Chaska where my mom and Briana are buried. Davey calls the cemetary the land of blessings.
They called me about 3:15 today.
I was having a quiet day, relaxing in my chair. I wasn't sure I wanted to change the pace of my day, but while Sarah was talking to me on her cell phone, the boys kept saying....
"What's she saying....what's she saying?"
Sarah told them I would be coming. She knew I was going to do it. She said to me, "I knew you would say yes eventually."
I could hear them in the background....
So, off I went.
It was a beautiful day for a drive. I thought it would be nice to see Sarah and the boys. I thought how nice it was to be wanted by these important people in my life.
And, I thought......."I GET to do this. I GET to see my daughter. I GET to see Sarah. Sarah is alive. I GET to do this!
But, the story isn't over yet.
Sarah called me as we were both on our way. She said she couldn't find a way to get there. The roads were flooded and, without going a long way out of her way, it wasn't going to happen easily.
Davey, who is 7, asked her...."Mom, are you lost?"
Sarah said, "No, I am not lost. I know where I am, but I don't know how to get where I am going."
Davey said, "Mom, that is the very definition of lost!"
We both turned around and went back home with smiles on our faces.
It was a nice day for a drive.....and a smile.
Friday, October 01, 2010
You know.....just thinking about the expression, "mind over matter...."
Sunday, September 26, 2010
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.
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.
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.
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.
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.
Let’s do this.
Thursday, September 16, 2010
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 just wanted to watch it with me.
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.
Saturday, September 11, 2010
The port was starting to bother her. She started to feel a sharp pricking sensation.
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.
Thursday, September 09, 2010
Sunday, September 05, 2010
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!
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!
Sunday, August 01, 2010
I have done nothing and yet I have done everything.
I have watched movies. Movies fill me up. They often make me laugh and sometimes they make me cry. It is a rare movie that doesn't touch me in some way.
I wonder if it was like that for my mother. I don't think so. She wasn't much of a TV person. She was a theater person. I think what I find in movies might be the same thing she found in theater.
I watched a movie with Patty Duke playing an Amish woman. One of her lines had to do with dealing with something that was hard. It went something like this...."Heaping blame on yourself is the easy way. It takes more strength to go straight toward what is wrong and handle it." I liked that line. I have remembered that line.
I watched a movie called Freedom Writers with Hilary Swank. It was wonderful. Miep Gies, the woman who hid Anne Frank, was in it. She said a wonderful line that I have learned is a Miep Gies quote. "But even an ordinary secretary or a housewife or a teenager can, within their own small ways, turn on a small light in a dark room." I liked that line. I like believing any one of us, in our own small way, can turn on a small light. It matters not how big or small we are. Children do it all the time in their innocence.
And, today I am watching a movie called Our House with Doris Roberts. She plays a lonely, rich widow who makes a suicide attempt. A young homeless woman saves her life. Doris ultimately takes multiple homeless people into her exquisite home and changes their lives while they change hers. It is filled with kindness and humor and mutuality. Who is helping who?
It is my time off. I am watching, smiling, laughing and crying. And, I just might make some jello. I have some Reddi Whip that just might top it off.
Am I doing nothing? Nothing could be further from the truth. I am doing the best something I know for me.
Monday will come soon enough,and my nothing that was something, will stay with me.
Monday, July 26, 2010
Last night, although if feels like a week ago, Sarah, Davey, Jackson, Amelia and I went to Dave's gospel choir concert at the Caponi Art Park in Eagan. It is a 60 acre part that apparently has tons of things to see and trails to walk.
Dave had the opportunity to solo last night. He did a great job and I am posting the video below. It was a beautiful night in a beautiful setting.
Tuesday, July 20, 2010
I often think of the roads of life and sometimes I give them names. For example, I might name a road Happy Road or Harmony Boulevard or Alive Avenue or Comfort Lane. It just depends on what road I want to be on.
The road I am on now is Cancer Road. It wasn't my choice. I was traveling along, let's say for the enjoyment of my children, Frontage Road. Oh yes, this is how my children know me. Mom takes the frontage road, and they are right! Given a choice, I am a frontage road girl all the way.
Cancer Road is a long and rough road. It is bumpy, hilly, curvy and you never know what is going to be around the bend. You better have your seatbelt on because you never know what you are going to run into. There are signs along the way. Four Chemos. Three Chemos. Two Chemos. One Chemo. You think you have arrived. You think you are home free. You think you have arrived at Post Cancer City. You stop and rest. You take a break until you have to get back on the road called Chemo Crabby Road. You didn't know that road was coming until you found yourself on it.
Chemo Crabby Road comes in disguise and in the dark of night. It is unexpected and piled with turmoil. You are supposed to be happy. You are supposed to have arrived at a better place. And, on Chemo Crabby Road, you actually feel worse than you did on many of the other roads. You look for signs that tell you where you might make a legal U turn and get off this awful road. But, there is no place to turn around. You have to keep going straight ahead.
It is hard. It is exhausting. There is a road that runs parallel to all of these cancer roads. It is always with you. It is called Fatigue Road.
I watch my daughter travel these roads. I travel them with her. Right now she is traveling the Sad Road. She hurts inside. Her tears are locked away. I feel them and they become mine.
I saw a picture of the Tour de France bicycle tour this morning and thought how those bikers' legs must ache as they pedal their way to their destination.
I wish it was my legs that ached on Cancer Road. It isn't. It is my heart.
Friday, July 16, 2010
Sarah and me having lunch after Dr. Zander's appointment
It was an ordinary day, except it was the day I was going to meet Sarah at Dr. Zander's office. Dr. Zander is Sarah's oncologist. Five words. Dr. Zander is Sarah's oncologist. That makes it not an ordinary day.
I took some time before getting ready to read her most recent CaringBridge entry. It was a good entry, a happy entry. It was filled with good things. She and Alyssa, her nanny, had taken the boys to a movie that morning.
When the movie was over, a woman sitting in front of Sarah turned around and spoke to Sarah. She said, "Excuse me, do you have cancer?" Momentarily, Sarah didn't know what to say. She finally said, "Yes, I had cancer." You see, Sarah's cancer has been removed. It was taken out. The cancer was removed when she had her double mastectomy. She sports a bald head now. She wears it everywhere. None of us thinks twice about it. But, it identifies her as having or having had cancer. She is a member of that community now.
The lady and Sarah continued to talk and Sarah shared her CaringBridge site with her. Sarah invited her to go to a cancer support group with her that night. Sarah even picked her up and they talked for a long time after the meeting. The whole story, as Sarah told it, was heartwarming.
It was supposed to make me happy. It was a happy story with a happy ending. I was surprised when I started to cry. There was something about the woman reaching out to Sarah. That was the moment that got to me.
I thought about it. I thought about how cancer patients can recognize another cancer patient out there in the world, and they reach out. There is an automatic bond. All the exterior things that seem to identify us in our normal lives fall away. None of them matter. Cancer touches people no matter what sex, age, color, rich or poor.
I kept thinking about it. And, then I knew. All of a sudden I felt alone, separate, isolated. I thought how wonderful it is to be able to recognize another human being who shares your story. And, what I said to myself was, "A cancer mother can't recognize another cancer mother out in the world, and reach out and say, 'Does your child have cancer?'"
Sarah's happy story touched something that made me cry. I talked with her about it. I didn't know if I should. That feeling was about me. She hasn't had room, until very recently, to know how this has affected those on the outside of her. I told her I read her entry. I told her it was a happy entry. I told her I was glad she had had such a nice experience. And, I told her it made me cry. She said, "Why?"
I told her what it made me feel. We talked. She understood. She cared. We went to lunch. We talked some more. We went to Target to fill her prescriptions from Dr. Zander.
We sat on a little iron bench while the prescriptions were being filled. I thought it was a comfortable little iron bench. She said, "It is iron!" I laughed.
We talked some more. She looked at me and said, "Did you think I might die?" She had asked Dave that question a while back. She said, "I haven't asked you that question." I said, "Yes, I did." She said, "I haven't been able to find my tears, but that makes me want to cry."
The prescriptions were filled. Sarah went to get them and we left the little iron bench, the bench where Sarah and I talked.
Tuesday, July 13, 2010
It will be four weeks on Thursday, July 15th, since Sarah had her last chemo. That time has been a mixture of feelings for me. I know that feelings never come one at a time. I know they come in multiples. Sometimes, they come so fast a person doesn't know what they are feeling or which feeling to give voice to first. They just live in you like they have taken up permanent residence. Sometimes they feel like univited guests. And, they won't leave until you do something with them.
I don't know for sure why I haven't written. Maybe I wanted everything to be over. Maybe I wanted to believe the hard part was over. Maybe I had so many feelings I didn't know where to start. Maybe I had feelings that were unexpected and I was silenced by their showing up. Maybe I knew there was unexpressed grief. Maybe things had been so busy that I hadn't had time to feel, and now there was, and I didn't want to feel.....so I didn't.
What made me write today? It has to do with what happened yesterday. I met Sarah at Dr. Miglioris's office. She hadn't seen him for six weeks. She was due for an injection for her reconstructive surgery. But, meeting with Dr. Migliori is so much more than that.
I have to change directions for a few minutes. This is where some feelings are.
I sat in the examining room with Sarah. I hadn't seen her much over the four weeks and I asked her how she was....not like how are you....but how ARE you. She said, "Crabby, really crabby...all the time." I saw it in her eyes. It was like multiple feelings had taken up residence in her body too, and were showing in her eyes. It is true that eyes are the windows to your soul.
When Dr. Migliori came in and she talked to him about how she was feeling, her tears started. He knew. He could finish her sentences. He understood. He said she was right where she was supposed to be in her recovery. He validated her reality...that when she is able to do something and seems to have some energy....at the end of the day it is like she falls off a cliff. He said there is no warning and no reserve. He told her it would take a long time. He told her it would take up to two years before she would feel like her old self. He told her it would be gradual and one day she would all of a sudden realize she felt better.
I sat in my chair and watched and listened.....and felt. I think in the last four weeks I let my defenses down. Things slowed down, chemo was over, I started to relax, cautiously, but I started to relax.
I think I took some time off. I think I knew there were feelings that I had to have. I think I didn't want to have them. I think I knew I had to have them. I think I knew I would have them.
I sat in my chair and watched and listened. There was a heaviness in my chest that threatened to show up as tears. I didn't cry. It wasn't the time or the place. I watched my daughter and took notes. And, today I had to write and cry.
We aren't done with this. We only finished some of what we have to do. It isn't over. It is just different.........for now.
Someday, we will all return to a life that will be closer to what we remember. Dr. Migliori said as much. I am going to hold him to his word.
Sunday, July 04, 2010
I have been working on accomplishing this for three days now.
The first video is of the Minnesota Orchestra playing and the second video is the fireworks finale.
I hope you enjoy them! Happy 4th of July!!!
Thursday, July 01, 2010
Tuesday, June 29, 2010
I raise the question because I am doing one of those or both of those. I think my question has to do with, not only the physical act of cleaning my house, but also with the need to do some emotional house cleaning.
I think....I know....I have been deeply involved in "cancer" since sometime last year. First it was my 36 year old niece, Briana, who died of uterine cancer this last February. She lived less than a year from the time she was diagnosed. I spent hours and days at the University of Minnesota Hospital in support of my sister, Bri's mom. I was at Briana's bedside, along with friends and family, when she went to heaven.
The first day I went to her home to help organize and pack up her things was the day Sarah called me to tell me she needed to go in for a second mammogram and ultra sound. And, five days later she got her diagnosis of breast cancer.
Since that phone call, life has had an intense focus of doing everything we could to get rid of the cancer and then do everything we could to reduce Sarah's chance of having a recurrence.
It has been twelve days now since Sarah's last chemo infusion and she is back at home with Dave and the boys. I started getting the feeling that I had to clean. I had to clean. I have to clean. I can't wait for the lady who comes to do the cleaning. She can come too but I have to start. I can't wait. I have taken down curtains and am getting them washed. I am dusting. I am vaccuming. I am reorganizing some things. I can't do it fast enough.
I know I am doing inside emotional house cleaning. It just looks like I am cleaning my house.
With every whiff of laundry detergent and fabric softener I breathe more deeply.
The windows are open. It is a beautiful day. The sun is shining. The temperature is perfect. I go out onto the deck every now and then and feel the sun on my face. I learned from the oncologist that Vitamin D is important. A little sunshine is good.
I know the answer to my question. It was never really a question. It is going to take time. It will. I guess I am going to clean my way to the future.
That made me laugh.
Saturday, June 26, 2010
Sometimes I think I am too easy to please. It doesn't take much to make me happy or have a good day. I wrote earlier today about Davey calling me and wanting to watch Toy Story 1 with me over the phone. See what I mean? That just made me really happy.
It is now 1:49 p.m. and I have talked to my son, Adam, who lives in South Carolina and is very instrumental in getting disc golf courses set up in his county. He was on his way to a new disc golf course that is being set up and he just called to talk. I love that. Over the road and on the phone talking to his mom.
Then, Sarah called. She is at a special spa pampering day set up by her oncology office. She had just had some wonderful healing touch/energy work done and it turned out to be a wonderful beginning healing experience that she will continue. She had so much to say, much of it through some tears.....good tears.
And, while it may not sound like fun, it is for me. When I am home alone I love to get things done. I have done laundry, thrown stuff out from the fridge, cleaned out the bread drawer, done bookwork for the office, paid bills, and now I am sitting down having a glass of pink lemonade.
Does the fun ever stop : )
I think I am beginning to relax now. I mean relax in the sense of beginning to believe that maybe...maybe....some of the hard stuff with Sarah is over. I know we have much more to do, and while I don't know what that will be in total, it feels like the future will be filled with good things.
It is fifteen minutes later. I had to go take some clothes out of the dryer. Freshly done laundry always smells so good. I can taste my lemonade. When I look out my windows the world is still. It is quiet except for the occasional sounds of a neighbor doing some yard work. The windows on the main floor are plastered with leaves from last night's thunderstorm and the decks are strewn with leaves and small branches.
In a little bit I am going to go cut up some chicken and make something for supper. It is a good day. It is a simple day. It is a "choose to" day. I can choose to do whatever I want to do today and everything I have chosen to do has made me smile.
It is a good day!
Before Sarah got cancer, it was normal for Davey to call me and just talk or watch his tv shows or watch a movie while I sat on the phone at my house. He likes to have me with him. He has done that ever since he was really little. Every now and then he will say, "Gramma?" I will say, "I am here honey." He will say, "Ok, just checking."
It is 8:22 a.m. and Davey and I are "watching" Toy Story 1. I am smiling. It is 8:25 a.m. and Davey just said, "Bye, Gramma." There is never any warning. He comes. He goes.
Joe, from Ireland, was on skype and was "watching" too. When Davey said bye, Joe said, "That was quick. I was just starting to get the hang of Toy Story 1."
There will be another time Joe. Normal is returning. And, I am smiling. Life is good.
Thursday, June 24, 2010
Last night when we met up with everyone at Noodles and Company I had to see if Jackson would say hi to Joe from Ireland, since Joe is Jackson's Godfather, and we always wish Joe was able to be with us. Jackson didn't really say hi, but I think he was a little confused because he often sees Joe on webcam. At least Jackson pointed at the camera after thinking it over. And, there is such a sweet ending on the video.
Wednesday, June 23, 2010
Sarah felt good enough to be able to go home to be with her family....they were all happy to have her at home tonight. This does not mean I don't miss her...because I do...big time.
All of us....Sarah, Dave, Davey, Derek, Jackson, Tom, Judy, and Alyssa, who is taking care of the kids and helping out at Sarah's and Dave's this summer, all went to dinner at Noodles and Company. While at Noodles I sat by Jackson, age 2, and got lots and lots of fish kisses : )
(Anyone who doesn't know what a fish kiss is?)
Davey, age 6, asked when he was going to get to see me again. It is nice to be on the most wanted list.
Derek, age 5, ran to see me and gave me a nice hug.
I got to watch America's Got Talent again tonight and saw a heartwarming audition. Two sisters, one 13 and one 20, both with Cystic Fibrosis, sang a song that touched the hearts of everyone....the judges and the audience including me. They had been told they would never be able to sing. It was a few minutes of genuine appreciation for life and courage and determination.
I had my favorite ice cream in the house...Pistachio Almond...and sugar cones....you know the dark pointy ones?
The sun came out this afternoon after some rain...the clouds were white and the sky was blue.
I laughed with Sarah today while she was still at my house.
The traffic was good on the way to and from Noodles.
The coffee is made for tomorrow...it comes on automatically so it is ready when I get up.
The sink is clear and the dishwasher is running.
When I was in facebook late tonight my grandson, Joseph, age 12, instant messaged me and we had a nice talk...that was really special.
And, now, I get to go to bed and think about the good things that happened today.
Yep, good things happened today.
Tuesday, June 22, 2010
She had had a rough night last night. She didn't sleep much in spite of taking some pretty powerful drugs. She needed sleep, but she also needed some fun. It has been a little on the dark side here the last couple of days, so I said, "Wanna go out for lunch?" That was met with a resounding "Yesssssssss!!"
We wanted to go someplace we hadn't been before. After lots of thought, I remembered a place I have been wanting to go. It is called Cowboy Jack's Saloon. It is close to home and the whole place from the outside looks like it would be fun....not your typical chain restaurant.
We headed off, once Sarah got her makeup on. When you have no hair, makeup is key! But, the new and good news is that Sarah's hair is starting to grow back.
We had some fun with that. After lunch at the saloon we came home and played a bit.
When Sarah shaved her head, because she was going to lose it anyway, I decided to grow my hair in support of her. I thought the little boys would need gramma to look regular and not have a shaved head.
Sarah's hair really is starting to grow back. There are some little spriggles of hair on her head now. They are very light in color and some are maybe a quarter inch long. She made a joke about needing to part her hair now. We laughed at that and also decided that maybe she should use one of my hair combs to hold her hair in place. A girl can have fun with lots of things!
Below are some pictures from our day and a little video that was just so fun to make. It was a good day and we are on the road up. Give or take some fatigue, and a few muscle aches and pains, the side effects are easing off a little now.
If fun and humor and laughter have the ability to heal, then we quite possibly overdosed on all the good things.
Below is the video I took of Sarah and me having an exchange about her fixing her bed. I was apparently in the way when she was starting to fix it and it went from there.
Monday, June 21, 2010
The world outside my window is overcast and quiet today. Rain is hanging in the air. I don't know if it has started to fall or not yet. I know it will. Tom started to mow the grass, but I didn't hear the mower for very long. The house is quiet. Sarah is napping. The lingering smell of the tater tot hotdish I heated up for her for breakfast is making me smile. It is what she wanted. All in all, it is a fine day.
Sometimes, life around here is just really nice and peaceful, safe and serene, tranquil and gentle. Being in the moments in my life are good even when it means there is something hard going on.
Sarah loves to hear the birds. They make her happy. The doe has not come to rest yet while Sarah is here. I hope she will. Life around here is ok. It is better than ok.
I think I feel some hope today. I had a flash this morning as I sat and talked to Sarah. She was in her bed and I was sitting in the glider rocker. She was still hurting from the muscle aches, but she said, for the first time during this round of side effects, "I know this is going to end." She couldn't say that yesterday. I knew then that everything was going to be ok. It is.
My deep breath just came out. Just now. Such simple words. Life today is ok and there will be better tomorrows.....tomorrows without side effects from chemo. Today, I feel the promise of tomorrow.
What Sarah sees when she looks out the window of her room at my house
My daughter, Kara, made me my grandma pillow years ago
Sarah's view but this time you can see her wig sitting on the wig head
The wig and wig head are part of our world for now
The tater tot hotdish I made for Sarah yesterday.....she loves it so much she just wanted to hug it....it is "mom comfort food"...nothing wrong with that!
It is a good day and there is the promise of tomorrow....I can feel it!
Sunday, June 20, 2010
Last Thursday, just a few days ago, was Sarah's 4th and last chemo treatment. We have come to call chemo day....infusion day.
Infusion day is the day you go to the chemo room and sit in a recliner, have a lovely heated blanket if you wish, visit with family and friends, bring sandwiches and drinks and snacks, meet some great people, get hooked up to your IV which will drip saline, anti-nausea meds, your chemo combination, done individually, so you know what you react to if you react at all and then your final drip of saline again.
From the time you arrive until the time you leave you can count on around six hours.
Sounds like a piece of cake doesn't it? The truth is, getting chemo is not the hard part. The hard part comes after you leave. You are never sure when the side effects are going to hit. Sometimes they hit while you are in the chemo chair. Sometimes they hit before you get to the elevator. Sometimes they hit the next day or in two days. But, rest assured, they will hit.
This last chemo was supposed to be a "woohoo" experience. It is what was expected. There was supposed to be a "high." When someone graduates from chemo, there is applause in the chemo pod. Yes, there is an end....an end to having to schedule the next chemo, an end to having to show up for another chemo and a projected end to the side effects from chemo…(not there yet!)
But….but…but…there is a truth you can’t know until you are on this journey. And, all we can do is tell you our story….try to tell you what it is really like, at least for us…for Sarah.
Finishing chemo, being done with infusion day, is not a “woohoo” experience. It just isn't. When you are done with the side effects, THEN, you are done with chemo. When you don't have to go back to chemo, and feel halfways decent, THEN, you are done with chemo.
Today is Sunday, chemo was Thursday, and Sarah has had two of the roughest days since chemo started. The physical side effects are similar to the other chemo’s. She has had nausea, loss of appetite, when she does eat her stomach hurts and she is so, so tired.
What is worse this time has to do with the emotional side effects. I don’t know if it has to do with the end of chemo and a letting down after holding herself together for so long, or the cumulative physical side effects, or the fact that her body is being thrown into menopause, or the fact that she watches her body and face look different, or the fact that being bald (while ok and fun for a while) has lost its appeal, or that she has missed and is missing time with her boys makes her sad, or that this thing called cancer has happened at all makes her sad…..I don’t know. I think all the above and more is probably the truth.
Sarah is sad and Sarah is mad. And, as soon as Sarah says any of it, she quickly says, “I know, I know, I am so lucky!” And, then she says, “But, I don’t want to be lucky. I don’t want to have to feel lucky!” She goes on to say, “I want to be normal. I want hair. I want to go back to my life.” “I want to spend time with my boys.”
As I write this entry Sarah is sleeping. She has slept a lot today. Most of this entry comes from our talking late last night. She is letting down. She is letting it out.
You know, Sarah is always Sarah. She wants others to know what this is like. What it is really like…..from the inside out. She just doesn’t have the energy to do the writing herself right now. It is too much for her. I will be her voice as best I can…..as long as she needs me to be.
My favorite thing she said last night, in the midst of the anguish was……..
“I don’t want to be Chemo Sarah anymore. I want to be Chemo Sabi!”
How I loved that! How I love you Sarah! Mom xo
Friday, June 18, 2010
Sarah's battle cry on her CaringBridge site, from the beginning, has been...
"Let's do this!"
Below are some pictures from that day. The team, that day, was Sarah, Dave, Davey and me.
She did it. We did it.
Davey was so glad to be there...he was so good and he has wanted to come to chemo from the beginning .. it wasn't scary for him at all
Bye chemo room .. thank you for the part you played in our journey
Thursday, June 17, 2010
Sarah's last chemo.
I sit here and pause. I wonder how on earth do I describe what those three little words mean. How do I describe what the anticipation was like...what the being there was like....what the leaving the chemo room was like...what the drive home was like..what the night at home has been like.
We stopped on the way home and picked up some of Sarah's favorite pizza. She was hungry. She hadn't eaten much all day. She wasn't really hungry. The traffic on the way home was terrible...bumper to bumper. Tom called me on my cell phone and said bad weather was approaching. We stopped and got pizza anyway. The storm bypassed us AND we got our pizza.
Dave and Davey came to Sarah's last chemo. Davey, who is almost 7, wanted to be there. Sarah had told him she would take pictures for him. He said, "But, mom, I want to feel the room." Davey was there. I brought Pop Rocks for him. Remember those? His package of Pop Rocks was watermelon flavor. I told him that qualified them as fruit. I said it out loud. The rest of the people in our chemo pod laughed out loud. It was funny! "Gramma rules." So, I got the other packages of Pop Rocks out and gave some to the other chemo patients. Everyone had fun. We all had fun.
It was Sarah's last chemo.
But, it doesn't mean Sarah is done. Not by a long shot. It only means Sarah is done with chemo.
Sarah will meet with Dr. Zander, her oncologist, in four weeks. He will then start her on Tamoxifen. She will take that daily for five years. The good news is that it will help keep her cancer from recurring. It will have side effects however. We will find out more about that as she starts taking it. With the chemotherapy and the Tamoxifen, her recurrence rate will go from 19% down to 10% or so.
Are we home free? It doesn't feel like it. Has Sarah had her last chemo. The answer to that is a definite yes.
We will meet with Dr. Zander every three months for two years and then every six months for another few years. He will keep a close eye on her. With every month and year that pass her chance of recurrence goes down.
Will I hold my breath for several years? I will get back to you on that.
Sarah's last chemo marked the end of something. It was strange leaving the chemo room. The other patients and staff clapped. That is what happens when someone is a chemo graduate. It has significance. I said good bye to the room. Perhaps I should have said thank you. Yes, I should have.
I wish I knew why, when I write certain things, I want to cry. It is in the stillness of the moment that the feelings come. The feelings don't always have names and that makes the tears nameless. They are real just the same.
This is going to take a while. What I want to write and what I have to write are different. Sarah is feeling the same way. We talk. We both know. What should be the obvious experience is not the reality.
A lot happened today. Much of it is still living in my body and I still have to find words for it.
Sarah had her last chemo today. For that I am grateful. I don't want her to have the side effects anymore. She won't. Not from the chemo anyway.
Our new road has yet to be mapped out for us. We have lots to look forward to. Good things. Her hair will be starting to grow back almost immediately. Although, she loves being bald. She will have maybe 80% of her strength back in about four months. She will be, maybe, back to her old self in about a year. Physically. The emotional journey will be a little harder to measure.
Sarah's last chemo marks the end of this part of our journey and launches us into the next part of our journey. The story doesn't end here.
We are just starting a new chapter.
Tuesday, June 15, 2010
Monday, Tuesday, Wednesday, Chemo Day, Friday, Saturday, Sunday.
Sarah did an entry on her Caringbridge site last night. She is wondering about things. She is wondering about life after chemo. She is wondering if she will keep up her Caringbridge site. She is wondering if she will write every day. She is wondering what she will have to say.
As I thought about her wonderings, I thought about how chemo has been the main focus of the last several months. From the time Sarah was diagnosed with breast cancer, we knew she would undergo chemo to lessen her chances of recurrence and leave no stone unturned on this journey toward a cancer free future. Sarah has three little boys and it has all been for and about them.
So, what will post-chemo bring?
Post-chemo will bring new changes. We will have doctor appointments throughout the year. We will meet with the surgeon, the plastic surgeon and the oncologist. Sarah's reconstruction will continue for several months and will result in a day surgery to complete the process. Her hair will start growing back. The first hair will be baby hair and will fall out. Then her real hair will start growing in. It might be a different color. It might be curly. It might be straight. We don't know. She will be on a drug called Tamoxifen that she will take daily for five years. She will probably go into menopause because that is what chemo does.
Post-chemo will bring a life of its own. Once the side effects from the last chemo wear off it feels like we are going to be home free. My mind gets that. My body has been braced for so long that I think it will take a little while for my body to catch up with my mind.
As I sit here and write I catch myself taking deep breaths every now and then. I know I hold my breath. Eventually, I have to breathe. There the secret is out. Even Judy has to breathe now and then. I like to write. I figure out what I am feeling as I write. What I know for now is that I am counting days, holding my breath, waiting for Thursday to come and be over, hoping the side effects are as minor as they were after chemo number 3, looking forward to my mind and body being connected, and somehow knowing that as Sarah moves forward her story will go on. I know it will be a story of hope. It will be a story of survival.
For me, my story is one of gratitude. I don't let myself feel that very much. When I say the word gratitude, it makes me realize how lucky we are, and what could have happened. I don't think I have let myself feel that part yet. There has been too much to do.
There has been a loss in all of this. It has been a "felt" loss more than a real loss. Perhaps some of you understand what I am saying. There is grief where there is loss of any kind. I will write about grief someday. I think it is important. In order to move on, we need to feel the grief of even our "felt" losses.
Maybe I will name this post, "Ramblings Of A Mom Whose Beautiful Daughter Took Her On A Journey That Will Never End."
I just did.
Friday, June 11, 2010
What is courage?
Some people say I have it.
Having courage, I think, is being able to act in spite of your fears.
What is strength?
Some people say I have it.
Strength, I guess, is being able to get up each morning
and do what you have to do.
Whether you are well, or rested, or not well, or not rested.
When someone you love, has or had cancer,
and goes through chemo....
You don't get a choice.
You don't think of what you do as having
courage or strength.
You just live your life the best way you can.
And, sometimes, that means you do regular
things, like laundry or grocery shopping or going
to work like any other day.
Sometimes, it means you laugh.
Sometimes, it means you cry.
Sometimes, it means you learn all you can
about cancer and chemo.
Everything you didn't want to know.
And, then, you try and fit what you learn into your life.
It fills your every waking moment and sometimes
It becomes your life and it becomes what you do.
Am I afraid?
Do I get tired?
But, I do get a choice.
My choice is to get up every day and do what
needs to be done.
If that means I have courage and strength...
Then, yes, I do.
Saturday, June 05, 2010
The instructor for that art education course was from India. He would speak softly and, when he spoke, he spoke of simplicity. I was hypnotized by his voice, his gentleness and his use of the word......simplicity. Over and over he would emphasize simplicity. I never forgot it. I can feel myself in that classroom listening to him even as I sit here forty six years later.
I have always known, somewhere inside me, that life is about the simple things. Simple things make me smile and bring me peace.
You know, I just figured something out that I have been wanting to say and didn't know exactly what it was.
Senses.....it is all about senses...that is what it is.....senses....
It is about what we see and hear and smell and taste and touch....the simple things that are always available to us. For example....
When I was shopping with my daughter, Kara, yesterday, we were in a store and all of a sudden we smelled the most wonderful fragrance. We looked for it and learned that lovely smell was coming from one of those diffusion things....the bottle of stuff that you put the reeds into? I had to find out if I could buy some and I could and I did. I am going to put it where I spend so much of my time. It will greet me every time I come to my basement to watch tv or be on my laptop.
Earlier this morning my 97 year old dad called me just to talk. He said he hadn't talked to me for a while because he was at my older sister's house. Hearing his voice made me smile. He said "I love you Judy." It always sounds the same way.
A little bit ago I ate my lunch. It was just a simple sandwich and a few chips and some pink lemonade. The sandwich was soft, the chips were crisp and the lemonade was tart. I tasted them all.
When Sarah shaved her head because of the chemo I chose to not shave my head because I thought the boys would need someone to look regular. So, I chose to let my hair grow. Slowly, I am getting more and more hair after years of wearing it short. I touch it and wonder what it will be like to have someone brush my hair when it is long. I used to brush my mom's hair and that makes me smile just remembering it.
The world, for me, is like a giant stage. There is always something to see....to look at...to capture your imagination, take you into your dreams or simply make you smile.
The other day, I got to see Jackson discover the little bench by the front door and find the doorbell. Ding dong...ding dong...ding dong...over and over. It was a sound I have heard each of the grandchildren make. Ding dong...ding dong....ding dong. It doesn't always bring a smile but there is something about watching a child discover the doorbell.
Below are some pictures of Jackson as he turns two and a lovely young deer that spent hours in our back yard yesterday.