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.