Tomorrow I start chemotherapy. Yes, I have been through horrible surgeries, radiation burns, death speeches, drug reactions and more. Yet, I am most afraid of chemotherapy.
My mother passed away December 2005. She was Doctor Mom. The one who held your hand when you gave birth; broke your knee; went on bed rest; lost the use of your legs and so on. She always was patient with medical questions. When facing the tough doctors, she went with and asked the questions you didn't know to ask. This has been so much harder without her.
On the one hand, I am grateful she is not here. I wouldn't want to put her through the stress of seeing me now. And she has visited and is with me always.
On the other, there is nothing better than holding her hand when you are scared. I am at heart just her little girl.
Monday, April 30, 2007
Saturday, April 28, 2007
Next Steps
I have faced and overcome five weeks of radiation, lung surgery and thigh surgery. Boy that sounds presumptuousness. Yet, I keep telling myself that. Looking back and what I overcame allows me to keep focused on the future.
Next week, I start chemotherapy. The side effects are pretty rough. I will get sick to my stomach. Mouth sores. Lose my hair. And all kids of other nasty things. Most of all, the thought of poison going through my veins is the most troubling.
I picture this poison chasing the cancer cells. Sort of like cops and robbers. I visualize the poison chasing the cancer cells through my blood stream. I dress the poison in a uniform with a gun and the cancer cells in black with a mask. I hate to admit it but I hope they all get blown away.
I have decided to shave my head. Not Telly Savalas bald but army crewcut. I can't stand the thought of my hair falling out. So I will take a preemptive strike.
Losing my hair will be OK this summer. I won't have to shave.
Next week, I start chemotherapy. The side effects are pretty rough. I will get sick to my stomach. Mouth sores. Lose my hair. And all kids of other nasty things. Most of all, the thought of poison going through my veins is the most troubling.
I picture this poison chasing the cancer cells. Sort of like cops and robbers. I visualize the poison chasing the cancer cells through my blood stream. I dress the poison in a uniform with a gun and the cancer cells in black with a mask. I hate to admit it but I hope they all get blown away.
I have decided to shave my head. Not Telly Savalas bald but army crewcut. I can't stand the thought of my hair falling out. So I will take a preemptive strike.
Losing my hair will be OK this summer. I won't have to shave.
I am more than this
I recently borrowed from the library a well known book "What About the Big Things?" Remember the book "Don't Sweat the Small Stuff?" This is a continuation on the theme. I borrowed the book with a pile of other stress management books.
A chapter in the book spoke to facing major health crisis. While the author confessed that he hadn't faced any real health crisis, he spoke about living in failing bodies. His point in this chapter was that our body is not our self. I struggled with this concept. Who I am is who I see in the mirror.
That is why I see a young, 20 something, clear faced, long flaxen haired woman in the mirror. She looks right back at me with all the world before her. Her eyes twinkle with promise, excitement and humor. Her hair pulls easily back into a pony tail and freckles sprinkle across her nose. Her hips are smaller and her skin clearer. She is beautiful.
I see a young woman full of energy, ideas and promise. She is hopeful for the future. She is the future.
She is still in my mirror.
A chapter in the book spoke to facing major health crisis. While the author confessed that he hadn't faced any real health crisis, he spoke about living in failing bodies. His point in this chapter was that our body is not our self. I struggled with this concept. Who I am is who I see in the mirror.
That is why I see a young, 20 something, clear faced, long flaxen haired woman in the mirror. She looks right back at me with all the world before her. Her eyes twinkle with promise, excitement and humor. Her hair pulls easily back into a pony tail and freckles sprinkle across her nose. Her hips are smaller and her skin clearer. She is beautiful.
I see a young woman full of energy, ideas and promise. She is hopeful for the future. She is the future.
She is still in my mirror.
Monday, April 23, 2007
I Get It Now . . .
I get it now - shopping online. All the perks of shopping without sore feet. Nice.
I shopped yesterday in the mall. Five stores in under two hours. Not a dress in sight that I would purchase. Sore feet, sore legs and mega sore surgery sites. So I hit the catalogs. Online. A first for me.
Don't get me wrong I've shopped online before - books. That is a piece of cake. And I'm online all day. My one connection to the world. Love that email. But purchase clothes. No go. I like
to try them on and see what fits or not. I'm not good at reading the descriptions or understanding them. I don't quite get the fabric names and descriptions. Or understand how you measure. I am used to seeing it on a rack and trying it on.
So I had an unexpected bonus. I shopped with my mother-in-law online. Now here is a woman who understands clothes. We don't have the same the taste in clothes but I respect her opinion on what looks good on me. And she accepts that I am a flower child at heart. For more
than an hour we looked at dress after dress - some worked and others didn't. We both agreed (yes, I said both) on a beautiful dress that I promptly ordered - even if the color we decided wasn't available when I ordered.
What a nice bonus, shopping with my mother in law -- all the focus on the good parts of shopping. I did miss the soft pretzels and coffee that usually comes with the mall.
I get it now. Although, I haven't seen what I ordered.
I shopped yesterday in the mall. Five stores in under two hours. Not a dress in sight that I would purchase. Sore feet, sore legs and mega sore surgery sites. So I hit the catalogs. Online. A first for me.
Don't get me wrong I've shopped online before - books. That is a piece of cake. And I'm online all day. My one connection to the world. Love that email. But purchase clothes. No go. I like
to try them on and see what fits or not. I'm not good at reading the descriptions or understanding them. I don't quite get the fabric names and descriptions. Or understand how you measure. I am used to seeing it on a rack and trying it on.
So I had an unexpected bonus. I shopped with my mother-in-law online. Now here is a woman who understands clothes. We don't have the same the taste in clothes but I respect her opinion on what looks good on me. And she accepts that I am a flower child at heart. For more
than an hour we looked at dress after dress - some worked and others didn't. We both agreed (yes, I said both) on a beautiful dress that I promptly ordered - even if the color we decided wasn't available when I ordered.
What a nice bonus, shopping with my mother in law -- all the focus on the good parts of shopping. I did miss the soft pretzels and coffee that usually comes with the mall.
I get it now. Although, I haven't seen what I ordered.
Sunday, April 22, 2007
A Cherished Visit
Over the last six months I have received more visitors than my total for a lifetime. This is not a complaint. I have cherished each visit as the visitors strived to keep my spirits up - and they did. I loved every minute.
Two visits stand apart from the rest. The first visit I have only told a few about -- my husband, priest, daughters and a couple friends. The visit occured after I received the worst of news. The doctor had called and asked me to send the CT scan CD overnight. The tumor in the lung had grown twice in size in less than six weeks. They were not sure it was operable. It would have to be reviewed by the surgical team. We would know within the week.
I could not sleep. My husband and I stayed up and talked all night. I had only found out about the cancer two months before and the end was already here. If they couldn't operate and it was growing so fast, then it was only a matter of short time. Hours passed and he finally fell restlessly asleep around 2am holding my hand. I tried to sleep by listening to healing music a kind friend had sent. I watched the shadows flicker on the ceiling and listened to the music when my visitors came.
The first visitor was my mother. She smiled and put her fingers to her lips. She looked beautiful. Her face was unlined and her eyes twinkled. The figure beside her was taller and shadowy. I sensed an incredible love pouring from the figure. Reaching over me, the figure lifted a basket of stones from my chest. Each turned and walked from the room. My mother waved as she followed the shadow from the room.
Filled with an incredible sense of peace and well being, I woke my husband and told him what had just happened. We held each other and I was asleep within minutes.
The second visit is as fantastic as the first. The night before my second surgery we attended mass at St. Patricks. The "Our Father" is my favorite part of mass. Growing up we held hands during the prayer and now my own family does the same. This moment of prayer holds us together united in that moment.
That moment was different for me during this mass. I felt hands my shoulders as I held my husband's hand during the "Our Father." My mother, grandmothers and grandfathers surrounded me and said the prayer with me. I could hear my Grandmother Marie scold my Grandmother Emily - "This is not about you." My Step-Grandmother Bill grumbled behind me. My Grandfathers stood silently. Just before the end, my Mother leaned over and whispered that they would be with me till the surgery was over.
I think about these visits often. Many would describe them as hopeful hallucinations. I prefer to think of them as visits. I do not think that many are visited by their deceased mother and God. Nor are many visited and comforted by their grandparents. Those visits taught me the meaning of faith but also the comfort of life beyond. They will be there when it is my time.
So will He.
Two visits stand apart from the rest. The first visit I have only told a few about -- my husband, priest, daughters and a couple friends. The visit occured after I received the worst of news. The doctor had called and asked me to send the CT scan CD overnight. The tumor in the lung had grown twice in size in less than six weeks. They were not sure it was operable. It would have to be reviewed by the surgical team. We would know within the week.
I could not sleep. My husband and I stayed up and talked all night. I had only found out about the cancer two months before and the end was already here. If they couldn't operate and it was growing so fast, then it was only a matter of short time. Hours passed and he finally fell restlessly asleep around 2am holding my hand. I tried to sleep by listening to healing music a kind friend had sent. I watched the shadows flicker on the ceiling and listened to the music when my visitors came.
The first visitor was my mother. She smiled and put her fingers to her lips. She looked beautiful. Her face was unlined and her eyes twinkled. The figure beside her was taller and shadowy. I sensed an incredible love pouring from the figure. Reaching over me, the figure lifted a basket of stones from my chest. Each turned and walked from the room. My mother waved as she followed the shadow from the room.
Filled with an incredible sense of peace and well being, I woke my husband and told him what had just happened. We held each other and I was asleep within minutes.
The second visit is as fantastic as the first. The night before my second surgery we attended mass at St. Patricks. The "Our Father" is my favorite part of mass. Growing up we held hands during the prayer and now my own family does the same. This moment of prayer holds us together united in that moment.
That moment was different for me during this mass. I felt hands my shoulders as I held my husband's hand during the "Our Father." My mother, grandmothers and grandfathers surrounded me and said the prayer with me. I could hear my Grandmother Marie scold my Grandmother Emily - "This is not about you." My Step-Grandmother Bill grumbled behind me. My Grandfathers stood silently. Just before the end, my Mother leaned over and whispered that they would be with me till the surgery was over.
I think about these visits often. Many would describe them as hopeful hallucinations. I prefer to think of them as visits. I do not think that many are visited by their deceased mother and God. Nor are many visited and comforted by their grandparents. Those visits taught me the meaning of faith but also the comfort of life beyond. They will be there when it is my time.
So will He.
Saturday, April 21, 2007
I Am A Wimp
On Tuesday, I faced a big fear. No, this wasn't the running of the bulls or public speaking but a simple, everyday fear.
I have experienced radiation, two surgeries - one of which I lost half a lung - and now looking right at chemo. But that wasn't a big fear. Those were have to's - not a lot of options, just have to do it. I didn't feel that this time. I felt I had a choice (although I didn't.)
I had to have my stitches out. Sounds simple right. But this was only 18 inches of stitches. From my knee to mid glute. A lot of big, black stitches. My stomach was squeamish.
My dad drove me to the doctor. I was hoping he would hold my hand. Nope, my Dad is as squeamish as I am. He sat in the waiting room. I was on my own.
So I dropped my trousers and bared it all for the doc. I did ask how many stitches there were - bragging rights you know - and the doc said there was one. One long stitch wrapped around many times - 60 plus times. And then it was done. Just like that - I didn't even feel it.
I asked - Why no pain? Did they use something?
The doctor said no - I just had no nerves.
I wish they had told me that before.
I have experienced radiation, two surgeries - one of which I lost half a lung - and now looking right at chemo. But that wasn't a big fear. Those were have to's - not a lot of options, just have to do it. I didn't feel that this time. I felt I had a choice (although I didn't.)
I had to have my stitches out. Sounds simple right. But this was only 18 inches of stitches. From my knee to mid glute. A lot of big, black stitches. My stomach was squeamish.
My dad drove me to the doctor. I was hoping he would hold my hand. Nope, my Dad is as squeamish as I am. He sat in the waiting room. I was on my own.
So I dropped my trousers and bared it all for the doc. I did ask how many stitches there were - bragging rights you know - and the doc said there was one. One long stitch wrapped around many times - 60 plus times. And then it was done. Just like that - I didn't even feel it.
I asked - Why no pain? Did they use something?
The doctor said no - I just had no nerves.
I wish they had told me that before.
Bless You Sunshine
I am convinced that my depression is from the lack of sunshine. As soon as the weather warmed and sun came out - my cobwebs blew away. My smile increased, spirits lifted and my troubles seemed smaller.
We accomplished so much today. Deleafed the flower beds, weeded the front flower bed, painted the swingset and washed the car. Of course, I watched from a chair supervising all the way. But we got so much done!
I was outside and walked a good part of the yard without a cane. Progress. I sat down, kneeled and stode up. Progress. I made it through the whole day and didn't nap. Progress.
So now I am sitting on the couch watching a funny family movie feeling that glow of accomplishment from watching my husband and children work hard.
Progress.
We accomplished so much today. Deleafed the flower beds, weeded the front flower bed, painted the swingset and washed the car. Of course, I watched from a chair supervising all the way. But we got so much done!
I was outside and walked a good part of the yard without a cane. Progress. I sat down, kneeled and stode up. Progress. I made it through the whole day and didn't nap. Progress.
So now I am sitting on the couch watching a funny family movie feeling that glow of accomplishment from watching my husband and children work hard.
Progress.
Monday, April 16, 2007
Blonde or Brunette?
I have been looking at wig catalogues. My husband asked what would happen if my hair didn't fall out with chemo. I would be so disappointed.
There is a beautiful, long, curly red wig that I have been drooling over. Or the medium dark brown kicky one. But the slightly curly long blonde looks good too. They do not look anything like my hair now. My hair now is the most boring ever. If I am going to loose my hair I want new hair not at all like my own.
For a moment when I put it on, I want to pretend I am a svelte, powerful and energetic Irish dancer. Just a moment.
For a moment when I put it on, I want to pretend I am sexy hair model swishing my hair back and forth with wind blowing it wildly across my face. Just a moment.
For a moment when I put it on I want to be a sassy Designing Woman who takes no prisoners. Just a moment.
For a moment when I put it on I want to pretend life is good and I am able to handle all that comes my way.
I want to pretend.
Just for a moment.
There is a beautiful, long, curly red wig that I have been drooling over. Or the medium dark brown kicky one. But the slightly curly long blonde looks good too. They do not look anything like my hair now. My hair now is the most boring ever. If I am going to loose my hair I want new hair not at all like my own.
For a moment when I put it on, I want to pretend I am a svelte, powerful and energetic Irish dancer. Just a moment.
For a moment when I put it on, I want to pretend I am sexy hair model swishing my hair back and forth with wind blowing it wildly across my face. Just a moment.
For a moment when I put it on I want to be a sassy Designing Woman who takes no prisoners. Just a moment.
For a moment when I put it on I want to pretend life is good and I am able to handle all that comes my way.
I want to pretend.
Just for a moment.
Friday, April 13, 2007
Living in Bold
Yesterday I was ready to blame everything -- weather, PMS, spring break - everything. Today I am still ready to blame the weather but am more able to face it.
I emailed friends online who are facing similiar situations and asked advice. Their reply was unanimous and interesting. Their reply was in essence "follow your passion." So I need to ask myself - what is my passion? What do I want to do and how do I want to do it?
Isn't that a question we all ask ourselves in our life?
I know what my passion is - beside my husband - but the question for me now is how to balance it. How do you balance passion with everyday life? How do you balance passion, everyday and cancer?
My online friends told me to work on my committee, travel, knit, read and follow my dreams. I was told - and now realize - I have been given a gift. Like a sleepwalker, I drifted through life putting out fires. First, fibromyalgia then autism, my mother and now cancer. Putting out fires. Now I have overcome two surgeries and more and I am just waking up. Now is the time to live the dream. This is truly a gift. An opportunity to live before it is to late.
I emailed friends online who are facing similiar situations and asked advice. Their reply was unanimous and interesting. Their reply was in essence "follow your passion." So I need to ask myself - what is my passion? What do I want to do and how do I want to do it?
Isn't that a question we all ask ourselves in our life?
I know what my passion is - beside my husband - but the question for me now is how to balance it. How do you balance passion with everyday life? How do you balance passion, everyday and cancer?
My online friends told me to work on my committee, travel, knit, read and follow my dreams. I was told - and now realize - I have been given a gift. Like a sleepwalker, I drifted through life putting out fires. First, fibromyalgia then autism, my mother and now cancer. Putting out fires. Now I have overcome two surgeries and more and I am just waking up. Now is the time to live the dream. This is truly a gift. An opportunity to live before it is to late.
Thursday, April 12, 2007
Making a List, Checking it Twice
Blame it on the weather, blame it on the circumstance or blame it on PMS - I don't know but today is a depressing January - no I mean April - day. Granted it is overcast, cold and rainy - a week running - so the weather is where I will place the blame.
Facing a uncertain future, I have made a list. Reality is that all of our futures are uncertain - hence the you could get hit by a bus speech - but my future is more so with the diagnosis of cancer. So I made a list and posted it on the back of my cupboard door.
A list of places to visit, things to do, books to read, people to call. A list of dreams. Now that I am feeling better and death is not at my door, what do I do about the list?
I am keeping it. And working on it. And crossing it off. It is not only my list of dreams but dreams to pass along to my children.
I am not ready to give them up or wait on them. It is time to live them.
Facing a uncertain future, I have made a list. Reality is that all of our futures are uncertain - hence the you could get hit by a bus speech - but my future is more so with the diagnosis of cancer. So I made a list and posted it on the back of my cupboard door.
A list of places to visit, things to do, books to read, people to call. A list of dreams. Now that I am feeling better and death is not at my door, what do I do about the list?
I am keeping it. And working on it. And crossing it off. It is not only my list of dreams but dreams to pass along to my children.
I am not ready to give them up or wait on them. It is time to live them.
Oh Great Zambini - What is the Future?
I am praying that this doesn't come across as whining. I am struggling with what next questions. How do I look at the next few years?
I know that realistically I have only at the most five years -perhaps more if the chemo is successfull. So whatdo I do next? I am not currently working but am co-chairing a large project that will have a profound impact on our community. The committee has moved on while I took a medical leave. But I sit here at home recuperating, looking at chemo and months of struggle and have a hard time deciding whether to participate or walk away and live (picture live in bold and with big letters). I am considering walking away and concentrating more on myself and my family. But I will sincerely miss the mental challenges of the project. Plus, walking away in some way admits defeat. Does it? Or is it not how I want to spend my time.
Is this a wake up call to change my life?
So, I am sorry if this comes across as a whine. I am grateful to be alive. This disease asks a valuable question, now what?
I know that realistically I have only at the most five years -perhaps more if the chemo is successfull. So whatdo I do next? I am not currently working but am co-chairing a large project that will have a profound impact on our community. The committee has moved on while I took a medical leave. But I sit here at home recuperating, looking at chemo and months of struggle and have a hard time deciding whether to participate or walk away and live (picture live in bold and with big letters). I am considering walking away and concentrating more on myself and my family. But I will sincerely miss the mental challenges of the project. Plus, walking away in some way admits defeat. Does it? Or is it not how I want to spend my time.
Is this a wake up call to change my life?
So, I am sorry if this comes across as a whine. I am grateful to be alive. This disease asks a valuable question, now what?
Sunday, April 8, 2007
My Single Sock
Today of all days, Easter, I am laid low and inspired by single sock. A lone piece of clothing and I am almost brought to tears quickly followed by joy.
The surgery left a long incision on the back of my leg with a leg drain. Each of these does not allow me, for the time, to bend over. Pulling on my pants and socks is difficult as you can imagine.
The hospital gave me a wonderful item that helps. My son calls it my picker upper. It is a real help except for the socks. Socks are harder. Too tight and narrow. Doesn't work with the picker upper.
So today in desperation I begged for help. My daughter got down on the floor and pulled on my sock. She smiled up at me and bounced away. I paused and cried.
My pride struggles with this loss of independence. At that moment, I realized that my greatest fault was my pride. This is an opportunity to practice humility. Quietly accepting help.
And being grateful.
The surgery left a long incision on the back of my leg with a leg drain. Each of these does not allow me, for the time, to bend over. Pulling on my pants and socks is difficult as you can imagine.
The hospital gave me a wonderful item that helps. My son calls it my picker upper. It is a real help except for the socks. Socks are harder. Too tight and narrow. Doesn't work with the picker upper.
So today in desperation I begged for help. My daughter got down on the floor and pulled on my sock. She smiled up at me and bounced away. I paused and cried.
My pride struggles with this loss of independence. At that moment, I realized that my greatest fault was my pride. This is an opportunity to practice humility. Quietly accepting help.
And being grateful.
Monday, April 2, 2007
My Literal Heart Strings
When my daughters were young, they fretted when Grandma and Grandpa left at the end of a fun visit. My mom kindly explained the invisible string that connects families hearts. Hers is connected to theirs and connected to mine and on and on. The girls loved it and we have talked about several times over the years.
Just last night my oldest daugher suggested that I explain heart strings to my youngest son. She thought he was old enough and it would help with all the trips over the next few years to New York. I thought about it and upstairs I went to explain to my autistic son about invisible strings connecting our hearts.
I first told him it was a secret. Only families knew about the strings. He thought it was a cool thing. We talked about who was connected and for how long. I told him that he was even connected to my mother who lived in heaven.
Big mistake.
"Where is heaven?"
"Up in the clouds."
"Are you going up into the clouds?"
I paused. Paused some more. And affirmed. "Yes, some day a long time from now I will be going up into the clouds."
"Will you live here with me in this house?"
"Sure I will."
"Are you only going one time?"
Huh. "Are you going into the clouds one time?"
"Yes, I am going one time and I will be with you again."
"Will I go to the clouds?"
I told him yes and kissed him goodnight. I flew out of the room and commenced sobbing.
Then I went downstairs to kill my oldest daughter.
Just last night my oldest daugher suggested that I explain heart strings to my youngest son. She thought he was old enough and it would help with all the trips over the next few years to New York. I thought about it and upstairs I went to explain to my autistic son about invisible strings connecting our hearts.
I first told him it was a secret. Only families knew about the strings. He thought it was a cool thing. We talked about who was connected and for how long. I told him that he was even connected to my mother who lived in heaven.
Big mistake.
"Where is heaven?"
"Up in the clouds."
"Are you going up into the clouds?"
I paused. Paused some more. And affirmed. "Yes, some day a long time from now I will be going up into the clouds."
"Will you live here with me in this house?"
"Sure I will."
"Are you only going one time?"
Huh. "Are you going into the clouds one time?"
"Yes, I am going one time and I will be with you again."
"Will I go to the clouds?"
I told him yes and kissed him goodnight. I flew out of the room and commenced sobbing.
Then I went downstairs to kill my oldest daughter.
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