Sunday, November 25, 2007

Tribute to Time

I was cleaning my husband's dresser this weekend. I found a card from his Grandmother's funeral. The poem on the back of the card was so moving and appropriate for this time of my life.

If suddenly we knew today
Was going to be our last
I'm sure we'd do a lot of things
Neglected in the past.
Like rising very early
So we wouldn't miss the dawn
Or running barefoot down a hill
Before the dew was gone.
I think we'd greet our neighbors
With a very special smile
And visit friends we hadn't seen
In quite a little while.
I'm certain we'd be careful
Not to tread on any toes
And listen with a kinder ear
To other people's woes.
We'd find much greater magic
In a sunset or a star
And wished we'd noticed sooner
Just how beautiful they are.
And finally, I think we'd ask
For extra time to do
These things we didn't do before
And lots of others too.
For all at once we'd realize
That our spiritual worth
Depends upon the way we live
While we are here on earth.
author unknown

Thank You for My Year

I have been struggling with an important anniversary since I last posted. The struggle has been so hard that I have put off posting. I have not let the depression sink back - I just postponed looking at this blog until I could do so without bad memories.
I has been a whole year since I received the horrendous news. A whole beautiful, roller coaster year. A whole year with no new growth. The original two tumors are far gone. A whole year. Far more time than I originally thought I would have.
And I am doing great!
Time is funny thing. You take it for granted until you are told there is no more time left!

Tuesday, November 13, 2007

Bless My Friends

What is the first thing you think a group of moms would do when visiting NYC?
Hit a bar, take in a show, shop Fifth Avenue, carriage ride in Central Park, etc. How about try new food? Shop at Macys or Bloomingsdales?
Or even visit the United Nations? Hard to take the kids through there, right?
Here we are on Wednesday night and all five of us are on Times Square. Acting like tourists with cameras and video camera. Where do we go first?
The toy store.
We are such moms. God Bless Us.

Dancing Naked

That got your attention!
No this isn't about dancing with the naked cowboy on Times Square. That is another blog.
This is about a funny incident at the doctors office.
After my MRI and CT scan, I was on one side of the offices opposite of where I changed my clothes. All I could wear for the tests were my underwear (fortunately it was clean and hole free), socks, shoes and a short cotton bathrobe. It was lunchtime and the back hallway was jammed with people celebrating something with food and cake. The attendent said that we would take a shortcut to avoid all the people in the back hall.
She took me through the waiting room. In front of all those people. No the ones that see naked people in gowns all day. No just the ones who have to wear the robes.
I looked so good in my short gown, socks and big clunky shoes.
Next stop, runway.

The Secret to Happiness

I have discovered the secret to happiness. To know what the secret I must first describe who I am in groups of people. I have often been the cruise director of a group. Asking questions, making quiet suggestions, or making complete plans. If not the cruise director, I was the wall flower. Hanging back until I could leave quietly disappointed.
I have decided to try to live. Many people have said that living is living in the moment. But I did not know what that meant. How can you live in the moment? How do you not worry about the future? Even if that meant worrying about what to make for dinner. You have to think about the future. Don't you?
On this trip to NYC, I went with four mothers of autistic children. We are in a support group together. They stayed with me for hours through scans and busy offices. They prayed with me and kept my spirits up - and my thoughts distracted.
When I received my good news I made a small yet conscious decision. To just enjoy these incredibly diverse women. Each has such strength and beauty. They each pause and listen to each other. A source of joy each. That decision led to my momentous discover. The real meaning of life.
To pause and enjoy the beauty of the moment. I put aside the worry of when we would eat; where we would eat; how we would get there; would it rain; is everyone enjoying themselves; will I make it; are my kids OK; do I have enough money and on and on and on - you get the picture.
I just paused and listened to the interchanges. The conversations and laughter. I watched people. I felt the rain on my face. I bought knockoff purses in Chinatown. I ate chinese food with a stranger at the table. I bought tickets for a play that I knew nothing about - and loved it!
In other words, I lived.

Sing from the Mountains

YEAH! My CT scans and MRI are clear! That makes almost a year with no new growth!
and better news . . .
The doctor said that my concern of three or four month scan was typical for a person at the beginning of the process. She said that people get better at it over the next five to seven years. My heart soared! Five to seven years! YEAH!
She also said to remember that there are treatment options. I have a subtype that is suspecitible to radiation and we can try chemotherapy. I need to monitor myself for the tumor could pop up anywhere - arm, leg even big toe. Fortunately the brain barrier.
I am celebrating. Many would think that perhaps five to seven is not a celebration - but that is more time with kids. More time to work on effective treatments.
More time for a cure.

Monday, November 5, 2007

Sex and The City

It's midnight. I can't sleep. What's new.
In less than 72 hours I will know if I can have another three months. I am measuring my life in three month segments. But that is another blog.
I am flying to NYC with four of my closest friends. Four amazing women who on the spot agreed to accompany and make this trip an adventure. Four women who will be there to celebrate with me or console me. I am indeed a lucky woman.
I was just watching an episode of Sex in The City. Ironic huh? Here I am going to NYC with four girlfriends who support through thick and thin.
I am truly a lucky woman.

Saturday, November 3, 2007

Yeah! I Did It!

Today I climbed halfway up a rock wall! Yes, ole gimpy climbed up a rock wall. The picture on my blog is me actually starting out. I am grateful that my daughters science teacher was on the anchor end or belay.
I wasn't nervous until I couldn't move up anymore. My husband kept saying just hop to the other foot but my leg wouldn't hop. So I stalled halfway up the wall. Fine by me -- I was done in!
I have never felt so proud of myself! While I wasn't one of the young kids scrambling up the wall with ease - this old woman with only half a leg did pretty well!
Go Me!

Sunday, October 28, 2007

Just Call Me Lumpy

I found a lump on my back. Just below my thoracotomy scar. A small painful lump on the outside of my rib yet below my skin.
OK, I was stripping wallpaper earlier this week. And I found the lump after I started wallpapering. My sister said that it could be a pulled muscle, stretched rib or a lump. So I stopped worrying.
Besides I am going for a scan in less than two weeks.
What I can't forget is that I started freaking out over the lump. I feel so stupid. Not because I found the lump but because I do have a plan.
In August when I was scanned I was not at all worried. I thought that I would be starting chemotherapy soon so if there was lump - no problem. Now that there may be a lump, I am freaking out again. Even though it only means I will be starting chemo. Just a little later than I thought.
Finding the lump reinforces the notion that this is a battle of lumps. One small step at a time. A marathon if you will. Not a sprint. I need to get used to thinking in terms of the overall picture without painting death at each bump and lump.
Sounds easy. Now let's see if I can do it.

Wednesday, October 24, 2007

Stripping Wallpaper

I started stripping wallpaper yesterday. The bathroom wallpaper. 30 year old blue flower ugly wallpaper. It was time.
I usually hate chores that don't involve books, radio or TV. They are boring. That's why I have trouble keeping to an exercise plan. It can be boring. But this activity, in my miniscule bathroom, was quite liberating.
I started thinking about what striping wallpaper meant. Stripping off layers. Out with the old and in with the new. Bright and fresh.
While I am not new, or bright and fresh, I think that stripping off layers sounds good. I am in the second half of life now. Who needs all these layers?
I love those commercials with the women with little makeup, wrinkles and advertising natural beauty. I believe in that - natural beauty. We are all beautiful - every last wrinkle.
Between the autism, cancer and now wallpaper - who needs all these layers?

Nightmares and More

Sunday night I had a disturbing nightmare. Frightingly real to the point that I could not wake up despite a full bladder. I woke up in a silent scream and could not go back to sleep. For hours, I relived the nightmare in my mind.
I couldn't think why I would have this nightmare now. What triggered this horrid experience? As soon as my husband woke up, I shared the dream with him. He suggested that I talk it through with my counselor. Good idea.
She had an interesting take on the dream. Even more interesting was how she led me to her conclusion.
She asked several quietly probing questions. Each question shed light on the nightmare. Like a spreading sunrise. Within minutes I saw the nighmare in a whole new way. I came to the conclusion myself -- even though she was probably there from the start.
The nightmare was a product of my own fear. Duh. I was completely helpless in my nightmare and I feel helpless in my fight against cancer.
Another interesting image from my dream was my carring a bowl of apples. Apparently that symbolizes my fear of not being able to care my family. I was afraid in my nightmare that i would spill the bowl.
I have never truly bought into dream analysis. I have had my share of psych classes and always thought it was over done.
I don't think so anymore.

Wednesday, October 17, 2007

Falling Down

I fell off the toilet again. OK that may be more than you want to know. But there it is -- after six months, I am still falling off the toilet.
It is difficult to sit on hard surfaces. Since the cusion is gone in my left leg; it goes numb easily. And I am often unbalanced. Hence falling off the toilet.
Good news. I am finally sleeping on my left side. Yeah.
Yeah, I celebrate the small moments. Like staying on the toilet.

Real or Hope

I know that it has been some time since my last blog. My apologies. There is much to be think about. I have been reading quite a bit about cancer and mental games.
One author stated that there is a difference between reality and hope. She said that a person should be real and know that cancer may win. She said that know this is not the same as hope. Her reasoning is that when you are told the end is near then it is worse if you haven't faced it.
I know that I will die. How - who knows? I am OK with death. Always have been. Just like the saying - There are only two sure things in life - Death and Taxes. I am OK with death - maybe not taxes - but death is fine. Someday.
In my mind I have been trying to reconcile the difference. My logical part recognizes the despair that comes with bad news. I have felt it and know that searing pain. Yet, I feel that if I for one moment; one fraction of a second believe that I can't beat this -- then I am giving in. Facing reality is not what I need now.
Now I need hope. I need to believe in my soul that my life is about more than this cancer. My life is not held hostage by this cancer. My life is not going to end soon by this cancer. I refuse to face reality.
I face hope.

Tuesday, October 2, 2007

Celebrating Small Moments

My son dressed himself today. My amazing five year old son dressed himself. And I was in the kitchen.

In the past it has been a struggle to get my son to pull his pants up, pull his shirt down or buckle his shoes. I haven't pushed it. Just kept at it. Giving him every opportunity to do it himself and praise every little step.

We had three goals this summer. Give up the bottle, dress himself and give up the binkie. The bottle went first and he made the decision to end it. Dressing took a lot more time. Just accomplished thank you. And the binkie is at least confined to bedtime.

Big progress.

Monday, September 24, 2007

Email forwards, Listening and God

A very good friend sent this to me recently. I have read it before and forwarded before but this time I paused to read it and think about it. Before I continue, please take a moment to read another persons forward.

This will give you the chills........ GOOD chills. A young man had been to Wednesday Night Bible Study. The Pastor had shared about listening to God and obeying the Lord's voice. The young man couldn't help but wonder, 'Does God still speak to people?' After service, he went out with some friends for coffee and pie and they discussed the message. Several different people talked about how God had led them in different ways. It was about ten o'clock when the young man started driving home. Sitting in his car, he just began to pray, 'God...If you still speak to people, speak to me. I will listen. I will do my best to obey.' As he drove down the main street of his town, he had the strangest thought to stop and buy a gallon of milk. He shook his head and said out loud, 'God is that you?' He didn't get a reply and started on toward home. But again, the thought, buy a gallon of milk. The young man thought about Samuel and how he didn't recognize the voice of God, and how little Samuel ran to Eli. 'Okay, God, in case that is you, I will buy the milk.' It didn't seem like too hard a test of obedience. He could always use the milk. He stopped and purchased the gallon of milk and started off toward home. As he passed Seventh Street, he again felt the urge, 'Turn Down that street.' This is crazy he thought, and drove on past the intersection. Again, he felt that he should turn down Seventh Street. At the next intersection, he turned back and headed down Seventh. Half jokingly, he said out loud, 'Okay, God, I will.'He drove several blocks, when suddenly, he felt like he should stop. He pulled over to the curb and looked around. He was in a semi- commercial area of town. It wasn't the best but it wasn't the worst of neighborhoods either. The businesses were closed and most of the houses looked dark like the people were already in bed. Again, he sensed something, 'Go and give the milk to the people in the house across the street.' The young man looked at the house. It was dark and it looked like the people were either gone or they were already asleep. He started to open the door and then sat back in the car seat. 'Lord, this is insane. Those people are asleep and if I wake them up, they are going to be mad and I will look stupid.' Again, he felt like he should go and give the milk. Finally, he opened the door, 'Okay God, if this is you, I will go to the door and I will give them the milk. If you want me to look like a crazy person, okay. I want to be obedient. I guess that will count for something, but if they don't answer right away, I am out of here.' He walked across the street and rang the bell. He could hear some noise inside. A man's voice yelled out, 'Who is it? What do you want?' Then the door opened before the young man could get away. The man was standing there in his jeans and T-shirt. He looked like he just got out of bed. He had a strange look on his face and he didn't seem too happy to have some stranger standing on his doorstep. 'What is it?' The young man thrust out the gallon of milk, 'Here, I brought this to you.' The man took the milk and rushed down a hallway. Then from down the hall came a woman carrying the milk toward the kitchen. The man was following her holding a baby. The baby was crying. The man had tears streaming down his face. The man began speaking and half crying, 'We were just praying. We had some big bills this month and we ran out of money. We didn't have any milk for our baby. I was just praying and asking God to show me how to get some milk.' His wife in the kitchen yelled out, 'I ask him to send an Angel with some. Are you an Angel?' The young man reached into his wallet and pulled out all the money he had on him and put in the man's hand. He turned and walked back toward his car and the tears were streaming down his face. He knew that God still answers prayers.

(THIS IS A SIMPLE TEST.... If you believe that God is alive and well, send this to at least ten people and the person that sent it to you!!!!!!!! This is so true. Sometimes it's the simplest things that God asks us to do that cause us, if we are obedient to what He's asking, to be able to hear. His voice more clear than ever. Please listen, and obey! It will bless you (and the world). Phil 4:13 This is an easy test - you score 100 or zero. It's your choice. If you aren't ashamed to do this, please follow the directions. Jesus said, 'If you are ashamed of me, I will be ashamed of you before my Father.' Not ashamed...Pass this on. )

I am not ashamed of believing in God. Nor am I ashamed in passing this along. My point is the listening. The most difficult part of listening is the noise in today's society. Noise from the street, radios, friends, children, TV and more. There is noise in our minds and hearts. Noise that stems from worry, anxiety, fear, happiness, etc. All of those ricocheting emotions that we experience daily.

Taking time to peacefully listen to the world and self will enable us to hear God. Whether that is through meditation, prayer, quiet walks or just plain turning off the radio when driving. I think that if I try to do that I may experience less stress. More time for myself (that I crave).

Maybe I will even hear God.

Thursday, September 20, 2007

Dancing in my Dreams

You know that commercial where the young man is walking on the sidewalk and his shadow is dancing. I have the same day dream. Except in my day dream, I am spinning, arms open wide, in a field of daisies under a bright blue sky. So what if in my heart I'm a flower child.

Tomorrow I have decided to indulge a dream. I have been dreaming of travel. Buying a camper and driving the country. Stopping for long periods and really exploring. Spending time with family -- building memories.

Fridays is my day with my son. We spend the whole day together. So I am going to go camper shopping. Granted we are no position to buy a camper right now. But I want to continue my fantasy. I think it is important to have that fantasy. Believe in that dream.

It's worth a half tank of gas.

Wednesday, September 19, 2007

And Another One

Now that life is taking a turn for me I hope to blog more often. I slowed down over the summer -- taking the time to enjoy my family. The kids are in school and I am ready to write again. In fact, I need to write again. So postings will become more frequent and cover a variety of topics. This is actually a good outlet for me. Cathartic.

Live Like Your Dying

I want to live like I’m dying.

Or so the saying goes. I think it’s a title, saying or maybe a phrase. I’m not sure which. Not that it matters.

I understand the above phrase. It’s about living. I want to know how to live when you are dying.

So many people would say to me -- you are not dying. And they would be right. But so would I.

In the logical part of my brain I understand that part of this is my depression talking. I know that these negative thoughts is depression weighing on me. I think that I have a right to that just now.

I have every right to rage, cry, bitch, complain and mope. I have all of those feelings and more. Because what I am facing just plain sucks. No two ways about it. Sucks.

Putting aside that right, I also know that somehow I have to comes to terms with how I live now. Another part of that logical part of my brain. How do I live knowing there is a time bomb waiting to explode?

I am seeking help. I started antidepressants. I am seeing a psychologist. I am reaching out to friends. And talking with my family. All the right steps.

The negative thoughts are starting diminish. There is still work to do. I still need to adjust to life in this new reality.

I thought I was taking it all pretty well but the day to day boredom got to me in face of what I want to do. I don’t have the adrenaline of the immediate threat to get me through.. Now I have the day to day everdayness looking at me. I want more.

But that’s another blog.

Tuesday, August 7, 2007

Taking Some Time

Good news -- in New York last week and my scans are clear! That is seven months with new tumor growth - I am dancing with NED! What a great time.

The doctors are advising no chemo at this time. Without a tumor to identify the effectiveness of the drugs, they can't justify chemo right now. So I am putting it on hold. At first it was hard to take because I wanted to be proactive. But after time, I realize that it is a sensible approach. The chmo I would have to take is very harsh - some of the worst given. Why make me sick now when they can't be sure it works. I was advised to embrace my time and not live scan to scan.

It is hard to not rush out and live all at once. I want to go now and see and do all that is on my life list. Today. It is hard to live beyond because the next scan could bring the next downfall. I think what she (my doc) is saying that I need to view my disease as any other disease -- like heart disease or multiple scelerosis. It is just another layer to my already layered life.

I like that. I like to look at it as just another layer. Que Sera (did I spell that right?)

The past few weeks have been lazy and hazy with my children. We have taken the time to slow down and just enjoy each other. Of course, there is band practices, doctor appointments, etc. But overall, it has been quieter than in the past. Lots of sleeping in, watching TV, walks, park visits, bike rides (well not me but them!), blowing bubbles, squirt guns, etc.

So the post may slow down a little. At least until school starts. I have several projects that I am picking up that include writing. My outlet for creativity and emotion. So expect more in August. Until then, I think I will go blow some bubbles with kids.

Tuesday, July 24, 2007

Keep On Moving

Yesterday I saw the animated Disney movie, "Meet the Robinsons." Of course, it has been out for a while but Mondays are fifty cents at the cheap movie theater. And it was raining.
All through the movie the audience is hammered with the theme persistance. A good theme. They even had a catch phrase "Keep Moving On." Apparently a saying of Walt Disney's.
While the theme was heavy handed, it struck a real cord with me. One I had been looking for - for some time. I have been struggling with depression. Not a surprise in my circumstances - facing metastatic stage IV cancer with few options. Up till about two months I have had good humor - recounting the positive, unique experiences so far.
Then I had to face life without the drama. The drama of going to the next surgery or recovering from a surgery. The immediacy of the threat.
Now it is an ongoing, everyday constant thought that I must contend with - in partner with several questions. Such as -- How much time do I have? How do I live the rest of my life? What will it be like? Will I live to see my children grow up? And so on and so on and so on . . .
So at the movie yesterday the theme hit home. I just need to keep on moving. Keep moving on. Persistance.
So my partial answer to the questions above is -
Ah, the hell with it. You know already.

Sunday, July 15, 2007

Has it only been a month?

My how time flies when you are having fun?
Since my last post so much has happened - it is all a blur. I have married again; flown to Florida; burned beyond recognition; shook hands with Mickey; driven here and there and well, lived a life.
First, my husband and I renewed our vows. Just like I wanted the first time. 20 years ago, a good Catholic girl, I married in the church. This time it was outdoors with flowers in my hair in my favorite place in the world - Hocking Hills State Park. The ceremony was performed by father with all of our family present. The day was beautiful, my children well behaved, I looked gorgeous. Just a perfect day.
Then a few days later we headed to Florida to one of second favorite places - the beach. Just south of St. Pete is small county park - Fort DeSoto. The beach is immaculate and water clear. We had a ball. After only a few hours each and every one of us was burned. And only the first day.
The next day we headed inland and stayed with friends in Orlando. We spent several days visiting WDW at a slow and leisurely pace (as slow as you can with my son and husband!) It was a blast! Thanks to our friends and Compassion Partners - we could afford the trip. A real bright spot for us right now.
Now the kids are in camps, summer gym and various activities. It is a real relief to finally have driving priveledges. If it wasn't for gas prices, I would get in the car and drive to California!
And the summer is half over. Soon I head off to New York for my next set of scans. I will also talk with my oncologist and discuss options. I admit that chemo scares me. I have postponed it so far but will have to do it soon.
I still have the hole in my leg. Or did I not mention that? A small hole opened in my leg when the PT's were working on it. The hole is from a stitch hole that didn't heal due to radiated tissue. Ick. My husband has to pack it daily. In essence, no swimming this summer. Bummer.
That is the update. I am finally getting back into the grove. My creativity is filling up again. I will start writing and perhaps put a book together. Keep me mentally active over the next several months.
Who know? I published once - I can do it again!

Monday, June 18, 2007

Another 20 Years

This past weekend I had my dream wedding. Under the falls at Ash Cave, my husband and I reaffirmed our vows in front of family. My brothers and sisters, aunts and uncles and cousins attended. We looked out at a lush forest under the grand sweeping arch of the recess cave. The weather was perfect with crystal skys.
Afterwards, the lodge served a small luncheon. We had a chance to visit with little kids running around playing typical tag games. There were no gifts, cutting of the cake or dancing. Just good friends catching up.
My husband was so handsome. I am an incredibly lucky woman to have so fortunate partner through everything. Together we face autism and now we have a verbal affectionate son. We have and are facing cancer and it has only brought us closer. He is a wonderful support and I adore him.
While our 20th anniversary is not a huge marker for many -- for me it is significant. At this time, who know what the next several years will bring. I wanted to do this now while I am able. I know that I could have another 20 - and I will - but why wait? Plus, this was my dream wedding. I never wanted the fanfare. I am a flower child at heart even if I grew up in the 80's. So standing in one of my favorite places telling my husband I love him was all I needed.
I look forward to the next 20!

Wednesday, June 13, 2007

Comic Lessons

Bear with me on this one. I am writing out something that has been brewing in my mind and heart. I am struggling with putting it into words. Words that make sense. Words that aren't insane.

All the tools that I have used to fight cancer; advocate for autism and care for myself and my family, I have learned from cartoons.

We have been reading comics books lately. My son loves them. They are the ultimate for him - a combination of colorful pictures, words and stories. I remember reading them as a child. I loved them for the same reasons. Granted, I read Richie Rich, Casper and The Archies. He is reading Mickey Mouse and Jimmy Neutron.

I started thinking about the tools I have needed to survive this journey. Emotional, spiritual and physical tools that you need to make the right decisions - as well as to just survive. Here is the beginning of my list.

Number One - Don't take it. Remember when Whiley Coyote would shoot off the Acme rocket at Roadrunner? He would shoot it and the rocket would fall on him. Flattened coyote. Next thing you see is Whiley rolling a boulder to drop on roadrunner.

Most of the time I feel that boulder has dropped on me. To toot my own sad horn - my son has autism, lost my mother and now cancer. Poor me.

But I need to be the coyote. Not the cute roadrunner (who I adore by the way.) I need to keep on plugging away, ordering from Acme, wait for the plan to fail, hope it doesn't and then research and plan the next attack when it does fail.

That coyote is my hero.

Number Two - Friends matter. Mickey Mouse doesn't stand alone. He is surrounded by Minnie, Pluto, Donald, Daisy, Goofy and more. He never does it alone. He has help - friends who step in lend a hand. That canny mouse is not afraid to ask for help - or lend a hand either. Minnie is in trouble - Mickey just steps in and helps with a word. Goofy falls off the ladder. Who is there with a bandaid, Mickey! Mickey's kitchen is ruined from making dinner - his friends pitch in to clean up. Then they celebrate!

Without a word my neighbors and friends stepped in with meals, car rides, house cleaning and Christmas shopping. I did not know how many friends I had until the cancer. To this moment, I tear up when I think of all the incredible kindnesses.

Number Three - Forgive. Donald and Daffy always get the short end. They get stepped on, paint falls on them, hammer hits their thumb, pushed into the frozen pond and on and on and on. Then they get yelled at for not doing - well, whatever - by their friends and girlfriends. At the end of the story, they forgive the trespesser (usually Chip and Dale or Bugs) and all is forgiven.

There were many medical bloops, oops and sorry I shouldn't haves at the beginning of this journey - and I am sure that will continue - that I need to forgive. Carrying on the burdon of "If Only" is tiring and soul draining. I forgive.

Number Four - Laughter cures all. Comics are universal. Reaching back to the caveman and his first five legged horse on the cave wall. To laugh is a release of tension and experience of pure joy.

In this battle, there are not enough moments of pure joy. I relish, cherish and celebrate each and every one.

Number Five - We are all human. Even the mice, ducks, rabbits, cats and dogs. In comics we are all the same experiencing the same joys and pains of life. Their experiences mirror my own in a bizarro fashion. That takes the edge off my own life. And adds humor.

For me it goes beyond the humor. To see moments of your life documented in a comic is to connect to humanity. A popular newspaper comic has occasionally chronicled a fictional young woman facing breast cancer. Her moments are similiar to mine. I do not the author but for him to document those aha's and chuckles to a national audience tells me I am not alone.

That's all I have for now. I may add to this list. I may expand on it. I may write a book about it - or least an article.

That's All Folks.

Monday, June 11, 2007

Counting Every Day

As many can tell by reading my blog, I have been struggling with a bit of depression. Granted, it is normal and understandble. That helps a bit. The problem is that almost every hour of every day, cancer is on mind. Just like when Adam was diagnosed and all I could think about was autism. Every day, every hour, every minute.
So bear with me if I whine this time. I think that a little whining is allowed. Just a little.
I am starting to feel normal. Life is readjusting and we are having normal moments - such as not being able to find the right screwdriver; cleaning up the spill on living room carpet; juggling schedules and realizing that the summer is scheduled and it hasn't even started! Absolutely like before the big C came into the picture.
These moments come and I feel like Ann again. Then something comes across my radar and the realization of what I am facing hits me like monster truck rally. An email from struggling online buddy; fax from the doctor; recent study with poor results; sympathy looks from the nurses; med report from the doc about life expenctancy and on and on and on.
The toughest is the reports on median life expectancy of 24 to 38 months. 2 to 3 years. Shit.
And now it is finding it's way into my thoughts and I am starting to accept this as OK. And that really is shit. I can't feel that way or think that way. I need to fight in my heart and mind. I can't be thinking I won't be around for my daughters graduation. I can't give in.
But I am so tired already and the fight hasn't even begun. I need to take my own advice and count my blessings.
1. I am alive today.
2. My daughters are amazing.
3. My son is doing incredibly well and a testament to what autism isn't.
4. My husband deserves a reward for the most patient and loving man in the world.
5. I have amazing friends who are an endless source of support.
6. I am going to Hocking to renew my vows. In a beautiful dress that I look great in.
7. I am clear of tumors as of this very minute.
8. I have a faith and know that despite all that has happened, God will take of me.
This is getting hard but I need to get to 10.
9. I am alive. That is worth repeating.
10. I have doctors that are highly respected who will know what to do when.

I feel much better. Thanks for listening.

Friday, June 1, 2007

Winning the War

I have a great idea for winning the Iraq War. It is simple and cost effective. Let's send the physical therapists.
I started PT last week. Three days a week. Stretching, biking, walking - all the stuff that requires far more stamina than I have. Then they add on another set. And another exercise. One more minute. And only a day off to recuperate. Torturers.
There is a sign posted that says $5 for each whine. Torturers.
I have a large scar with large, hard immovable areas. Painful to sit on. The PTA works on this each session manipulating the scar to break apart scar tissue. Torturers.
Then I need to wear shorts. Show off the scar. Not capris but shorts. Torturers.
Not to mention that I have homework. Not just at PT but at home. Nightly. Post shower. Morning. Torturers.
So let's send them all to Iraq. One sight of them and the insurgents will surrender. Osama will run out of the hills.
Oops, my sis is a OT. Maybe I should delete this.
Nah, too much fun.

Wednesday, May 23, 2007

The Cure for the Blues

I have found a cure for the blues. An honest, never fail cure. Good crustly, grainy fresh bread - preferably warm with sweet cream butter. Even better with coffee or herbal berry tea. Trust me, it works.
For some this cure may take awhile to appreciate. Especially if you worhip at the alter of protein and spit on carbs. But for myself, warm, crusty bread is heaven.
These past several weeks have been hard. A real downer to utilize old folks lingo. The realization of what I am facing hit hard. Then I started. Ate my bread with some herbal berry tea. With a good friend. Better than chocolate.
Ok, not as good as chocolate. But so close.

Monday, May 14, 2007

The Worst Kind of Shopping

Almost as bad as shopping for a bathing suit, I went shopping for a bra. Since surgery, I have not been able to wear my old bras. The lines hit right on my scar - irritating to say the least.
I took my daughters into the dressing room after many minutes of staring at the large and varied selection. What happened to bras without underwire?
I found several to try on and with my daughters murmuring encouraging words began the humiliating process. The first was too tight. The second was too loose. The third felt strange. And so it went. Finally, I found the right bra. Megan thought is was too plain. Tightly whitey plain. I didn't care if it had purple polka dots. It felt good.
I am reminded of how hard it is too find a good bra. The straps slip; dig into your shoulders; underwire digs into your sternum; front clip unsnaps; pop out cup in big meeting; snaps undue in back and so on. It's a wonder we make it through the day. Or burned our bras in protest. Who designs these things?

Wednesday, May 9, 2007

Happy Birthday to Me!

I turn 42 today. I am firmly planted in middle age. Although I just had someone tell me they thought I was older. Happy Birthday to me . . .
We made a decision. I am going to wait awhile for chemo. Give myself some time to heal physically and emotionally. It is now a beautiful spring and I want to be with the kids. Together as a family.
I now can focus on my son and his needs. For so long the attention has been focused on me. Now I need to focus on him.
And my daughters. They have to shoulder so much. They need a break from the cancer. They need time to be with me.
It is a question of quality of life. The cure is as bad as the illness. We just need a time out to figure what to do from now on.
There is a relief from making a decision. I have the joy of life returning to a semblance to normal. Yet in the back of my mind I wonder if I shouldn't be more aggressive. I suppose I will always wonder.
Right now, it is a beautiful May day. I feel the need to celebrate. I am going to embrace my day!

Saturday, May 5, 2007

Have a Comment?

For those few who are bravely reading my blog, I am putting in a new feature. Comments. Please feel free to comment. I do reserve the right to review and post the comments. Just a safety feature. Your comments are welcome!

Living in Between

We have a plan. A tentative plan but at least a plan. Since my allergic reaction was so severe, I will see a allergist/immunologist this week. We are postponing chemotherapy for a time. Scanning more frequently to stay ahead of the disease. And trying to see exactly what is going on. Why the reactions. Postponing also gives me a chance to heal. Physically and emotionally.
A high and a low. And many good in betweens. I have to learn to ride the high over the low and live in between. The in between moments such as watching a movie with your kids; a good heart to heart with your best friend; nice dinner; sleeping in; a good book; a flattering look from a stranger; hugs from your husband; kisses from your children. The in betweens.
I am conflicted. Should I press on? Be aggressive. Should I wait and give myself a time of peace and healing. Will the tumors wait for me?
Again, the in between. Is there an in between on this? Either way, I plan to live here in my in between.

Tuesday, May 1, 2007

Flood of White

What a shitty day. They weren't kidding when they talked about lows and highs. A high last week with clean CT scan and a low this week with chemotherapy. What a shitty day. The sad part is it would have been a better day if I had chemo.
For more than an hour I was pretreated. Anti nausea; benedryl, zantac and IV fluids. Then the hard stuff. Within one minute, I experienced the worst reaction of my life. I struggled to breathe and felt pressure in my chest. I was paralyzed. The nurses sprang into action and pumped me full of benedryl and steroid. I was put on oxygen. Quickly, I came out of it. Overall, it took no more than three mintues.
Next week we are going to try again. Pre and post medications with lots of hope and prayers.

Monday, April 30, 2007

The Hardest Part

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

Friday, March 30, 2007


When I left the hosptial it was on my own two feet. Ok, four if you count the walker. I was so proud of myself. My husband tried to put me in a wheelchair except that I couldn't bend my leg. So it was on my own power that I walked out. Still, it was cool.
I spent the following week with my sister at a friend's house in New Jersey. She worked me hard that week. But I will save that for another blog. The doctor sent me home with Jackson Pratt Drain Tubes. I gather this speads up the wound healing and staves off infection. I really didn't know what they were talking about before the surgery. I read the booklet. I looked at it online. They told me I could have up to two tubes. OK, that was fine with me. Just get this tumor out of me.
I am now in week three. They just removed one tube. I am finally home. The problem is the other tube. The problem isn't that it is inserted just above the back of my knee. No, that one is obvious. The problem is that I look like Frankenstein. I have tubes sewn into my body. Tubes with liquid going through. Gross. It takes some getting used to - and the big black stitches up the back of my leg don't help.
Just call me Frankenmom.

Thursday, March 29, 2007

Only another Mother

Only another mother would understand. That is what I keep telling myself. Frankly, I am ready to commit hari-kari if I watch another episode of SpongeBob. Let me go back a bit and explain.
On Saturday when I returned from New York, I came into a house full of the stomach flu. My poor husband had been up all night with poor son. My daughter was avoiding everyone so she wouldn't get sick before her big class trip to Washington DC. My other daughter was having a small breakdown over a large project due in a few days. I was tempted to turn around and drive back to New York. Welcome home Mom.
Actually, I did feel welcomed. The house was spotless. A real feat considering all of the problems of the day. There was a large sign across the hallway. And lots of hugs and kisses. A very good welcome indeed.
So it is many days later and I am still nursing my son back from the stomach flu. We are watching many cartoons and drinking at each commercial. Thank you Lord for suppositories (you know what I mean Moms.) There is an upside with all of this. He is so cuddly and wanting to be held. It is good to be home!

Wednesday, March 7, 2007

My Fear

Written in January before the initial consultation with MSKCC.
I am leaving for New York in less than 12 hours. It is not on my list. In fact, I
never dreamed that I could go back there. But go I will and happily with hope in my heart – skipping like a Disney princess toward her dream.
I don’t really have a choice. For the last five weeks I have been researching like a crazed person. Every chance I get I perch on the side of the chair by the desk and surf the Internet. Yeah, perch because I only can sit on half of the my but. Marvin has the other side (for those who don't know - I named the tumor Marvin)
I read and read. A medical dictionary open on one browser and abstracts on another. Boy I wish I paid attention in college biology. I also wish these guys would write in English.
I know that they are writing for their peers but what about their patients? In reality, there isn’t much information about my fat cancer. I know that there are five subtypes (I’m not sure what I am right now – first question for the doctors) and the subtype determines the outcome. After four death speeches from my doctors, the outcome doesn’t look good. So I go for second opinions. Ironically, the insurance company will help with as many second opinions that I get. Despite how many times, it’s still called a second opinion. Hm. Let’s hope my next one is not a death speech.
That’s why New York. I really need to visit a large cancer center that has seen what I have. God bless the doctors here but many haven’t seen this. I need someone who knows what they are talking about – researching it and curing it.
I spoke with a priest last and we spoke a bit about the end. At what point do I stop the cutting on my cancer and just go home to be with my family. I hear and write that statement and only hear – at what point do I give up?
I know that at some point, that is a reality. I have learned the difference between realism and fatalism. I clearly defined line in my head. Realism is that the odds are against me. Fatalism is that stop fighting. For me I will think ahead and plan but I am not going to stop fighting.
So again that’s why New York. If I decide to go the route of chemotherapy recommended by the doctor’s in Cleveland and it fails – then I go to the second round of defence. That’s why New York.
Does it sound like I am tyring to justify the trip? Yeah, it does. This trip is hard on my family in a number of ways. Emotionally and financially. My girls have to stay with friends – okay that’s not so bad. Adam is going to his grandparents – and that’s not so bad either. I get to spend a few nights alone with husband. Okay, what the heck am I worried about?
So this is the first installment of my trip to New York. I don’t know why I am so nervous. I think that my fear is creeping back and I am afraid that New York will be death speech number five and six. I am afraid that I am going to come back and have to tell everyone that again there is little hope. I am afraid that it won’t be a death speech but multiple trips to a city that exhausts me. I am afraid that the cost won’t outweigh the outcome. I am afraid that I will have to ride that damn wheelchair through Times Square and bump through puddles. See, real fears.

Tuesday, March 6, 2007

Octopus Women

During my stay in the hospital a few weeks ago, I was struck by the similiarity of myself and all the other patients. We wore the same lovely, designer gowns. Some, of course, less than others. We were all attached to blue poles. We all woke up at 6am and went to bed at 10pm. No one slept in their beds during the day - we dosed in our chairs.
Oh, you don't believe me - at 6am promptly a team of nurses and assistants would arrive bedside turning on lights, attaching blood pressure cuffs and sticking wands in our mouths - before we cracked our eyelids. By 6:15 we were all seated across the ward and the beds made. At 6:20 the doctors arrived for daily assessment. And at 6:30 we were asleep sitting up in our chairs. What do you expect for a group of recently operated older people (myself excluded)?
The worst part was the walking. Some depraved individual had determined that 14 laps around the floor was a mile. Am I the only one who thinks that someone had too much time on their hands? So after breakfast, the rounds began. The goal was to walk 14 laps before bedtime. My goal on day one was 6 laps. I know, I know - I'm a wuss.
So here I was only twelve hours after surgery and I'm walking the floor. I have tubes coming out of me everywhere. IV's (2), epidural, drain tubes and others that I don't want to think about. I looked like octopus women.
All these tubes were attached to a tall, blue wheeled pole. Everyone had a blue pole. Everyone. We clung to these blue poles like a life line. The epidural had a button on it - the button delivered the pain med. The pain med was attached to the blue pole. You didn't go far from the blue pole. Acutally, we spent most of the day unwinding the blue pole. Like necklaces tangled in a jewelry box, the tubes would get tangled around the blue pole. Hey, it passed the time.
On my first day - 6 laps - I struggled putting one foot in front of the other. Older people - by like 20 years - would snap at me to move aside to the slow lane. They would zip to the corner and cough. Zip again and cough. Down the hall to the next corner and cough. About 8 to 10 people at a time would be walking the halls. There I was crawling like a tortoise to the one corner - attempt to cough - and crawl again. My second time around I noticed a hall midway that cut the floor in half. I took the hall and cut my walking in half. My husband noticed. I told him that I would walk but it would have to more frequently with shorter trips. He sighed.
The next day my nausea was much better. Pain was still pretty constant but they couldn't do anything with my allergies to narcotics. Which just sucks. So up at the usual time sitting and soon the walking began. I have to admit I did much better. In fact, I walked 14 laps that day! A whole mile! Yeah me.
I did ask the nurse why the others seemed to have it easier and walk faster. Was it because my surgery was more intensive? Of course, she replied. But also, remember they are on morphene.

Saturday, March 3, 2007

Clean Margins - Music to My Ears

Late Wednesday night I received a much anticipated phone call. For days I have called New York asking if my pathology results were in - no go. I have called so often they know my voice. Hello Mrs. Schlosser. We do not have them in yet. Call tomorrow. Have a good day.
Finally, they called me. The nurse sounded so happy on the phone. This is a good sign. So far, all the nurses who have called sounded regretful or even toned. Not this time. She said that the doctor is very happy with the pathology results. Clean margins! They removed all of the tumor.
I admit I cried. Ok, that is not much of a stretch seeing as I cry over just about everything. This time, there were tears of joy. I hugged my children, called my husband and father and opened a beer. Yeah, it was 6:30 pm and we hadn't eaten dinner but I would've opened champagne if I had it.
So this begs the logical question. What next? The leg surgery is scheduled in about two weeks. And I will be there for a few weeks. The surgery could be involved and we won't know until we get there. We also won't know about the recuperation until the surgery. In other words, we just don't know.

Scanning and Scanning Again

When the doctor told me that I had cancer I was immediately scheduled for a CT scan of the rest of my body. This was to determine if there were tumors elsewhere. At the time I did not realize the implication. Now I know that it means did that the cancer may have metastasized or spread from the original site. In my case, that would put me at stage IV or pretty close to the end.
The CT scan was pretty easy. It was by contrast and I am allergic to iodine. They premedicated me and the test went well. Due to the holidays, it took quite a bit of time to get the results. There appeared to be a small mass in my right lung and PET scan was ordered to determine what it was exactly.
Am I the only one who wonders if there was a DG scan?
The PET scan was in one of those mobile units that only came to my hospital every Saturday. The semi trailor was connected to the back of the hospital and I was had to fast four hours before the test. In this case, I woke up that morning to the phone ringing and they were going to reschedule my test – move me up three hours. So I was not allowed breakfast. My fasting was going on 16 hours.
The test went well and pretty quickly. Even nicer was the fact that I could wear all my clothes and didn’t worry about metal. They shot me full of a radioactive dye, I waited 30 minutes and then the test started. 25 minutes later it was over. I certainly hoped my husband was waiting with a Big Mac. I was ready to chew my arm off.
I sat up from the test and received my home going instructions. Was I going near an airport? By a federal building? Riding public transportation or through a tunnel? This is Canton right? Point me to the closest tunnel – two hours away in Wheeling. I must have looked puzzled because the assistant handed me a paper that explained to the authorities that I was radioactive. So radioactive that I would set off the bomb detectors!
I said that the airport, federal building or bus was not a problem. Could I still go to the grocery store for milk? Nope. Stay in the car and send in my husband. There goes dinner out. I was also not around my children. No hugs or kisses for 12 hours. No tucking into bed or how was the test? I could only wave from the other side of the room. I stayed upstairs the whole night. I think my husband was worried that he shouldn’t sleep in the same room. I told him he didn’t have a choice.
My only worry was for the septic system. The next day would it glow in the dark? Would they see it from space? Could this cause problems for NASA?My husband was worried for my safety. If Osama bin Laden captured me, could he make me into a bomb?

Thursday, March 1, 2007

My Radiation Simulation

Today I met with the radiation oncologist. I feel so stupid. Who knew there were so many different oncologists? I thought there was only one kind. This is worse than buying bread – wheat, potato, low carb, white. There is too much to choose from.
We got the run down on what to expect. There are some pros to this cancer thing. I’m not supposed to lose weight. That sounds good during Christmas cookie season. I will also loose the hair permanently on the back of my thigh. Yeah! No more twisting around to shave my thigh in the shower. I like this.
They schedule me for something called a simulation. I guess this is where they set up all the computer stuff and try to figure out the best way to zap the football. My girls and I have decided to name the football. If I’m going to live with it – it should have a name. I chose Marvin. I never liked the name and certainly don’t like this tumor. Sorry to all the Marvins in the world.
Back in the far corner of the radiation oncology department is a lowgrade CT machine. A small donut that looks like the younger brother of the main one in the hospital. Off go the clothes. No time for modesty here. I didn’t tell you before the football was now reaching up into my gluteus maximum (yeah, the butt) and down to my knee. Marvin was a nice, healthy, bouncing tumor.
So I stripped. From the waist down. Except for my socks and shoes. And the blowing in the breeze hospital gown. I looked beautiful. Up on the table I went. A Herculean effort on my part and unfortunate for anyone standing behind me. That hospital gown only covers so much.
The first simulation was on my stomach. I lay there for an hour as they manipulated my leg and body. Scanned the tumor. Moved me again. Scanned the tumor. Moved me again. Another scan. You get the picture. It was all a piece of cake until the doctor came out and said we need to protect the anus.
Excuse me. Anus means my butt right. He looked at me and calmly explained the problems if they radiated that area. I would be in real pain every day. So they had to know where it was. There was only way to find out. I said that I knew where it was - and they could see where it was - so why do we have to do this. The CT scan couldn’t tell where it was. I now believe this is an evil machine wanting to inflict harm.
So the humiliation continued from the stomach view. While I was gussied up - butt and leg in the air with my face down in a hospital pillow, I was introduced to another gentleman. He didn’t have a surgical coat on. I thought he might be from billing. Were they going to make me pay before they continued? Half now and half on final treatment.
This guy was the dosing guy. He helped to decide how much I would glow by. Let’s count the number of people in the room I am flashing. The radiation oncologist, the radiation technician, the nurse, the nurse assistant, the radiation technician intern, the dosing guy and the physic’s guy - there may be more but it was to crowded to see.
I am so proud. I think that I may have a broken a record for flashing the greatest number of people - next to that guy from the Oscars.

My Diagnosis

It’s been two weeks since my biopsy. My family has gone home reassured that I’m not going to die this week. The wound site pulses. And children are on edge. What fun we are going to have for Thanksgiving! Pass the turkey and oh, Aunt Marge did you hear about my football sized tumor.
Yes, it’s a tumor. After surgery, the beautiful chief resident told me it wasn’t an infection but a tumor. The question is – what kind? Benign or malignant? I don’t need to tell you what I’m pulling for.
Apparently the pathologist is on vacation. Who says this guy can take a vacation? Doesn’t he realize I’m getting phone calls day and night from back seat doctors who all know more than he does? What gives him the right to lie on the beach when I can only lie on the couch?
The worst part right now is I’m off the drugs. That’s right. All drugs except for -those lovely, don’t work for me, over-the counter pills. See, I had a reaction to the narcotics. So off I came from the drugs. Of course, the docs all said that I could take them. But my family hid them. They are so mean. The doc gave me another prescription for a milder narcotic if I needed it. Funny how once I came off the drugs, the tremors and all the symptoms went away. Still no diagnosis. No less stress. But no weird symptoms. Good, Huh?
Finally, after waiting and waiting, only days before Thanksgiving, we get the call. Yes, it’s underlined so you can hear the reverberation through the room. The call. It’s the cheerful nurse, the surgeon’s right hand, who delivers the news. I’m sorry you have lipsarcoma. High grade. Highly aggressive. You need to start radiation immediately. We will then remove the tumor.
Lipo suction what? No, liposarcoma. This is rare. Sarcoma is cancer of the soft tissue. Liposarcoma is cancer of the fatty tissue. Oh I say.
Inside, my world tilted. Outside only my voice quivered. I was told that there would be additional tests. To check if the cancer metastasized. If it hadn’t, I had a good chance of beating it. Stay strong she told me. They would see me at the end of radiation.
I hung up and the front door opened. Two of my son’s tutors were here to work with him. I didn’t have time to cry. I didn’t have time to process. I could only thank God that my daughters were at dance and not home. So I joked. I stayed positive. There would be no negative thoughts here.
The bottom line is I have fat cancer. Nothing sexy here. No breast, cervical or uterine. Nope, fat cancer. Ironic, huh?
What color do you make a ribbon for “Let’s Cure Fat Cancer.”
I wish for the moments of hope before the phone rang.

My Biopsy - The Beginning

I have a mass on the back of my left thigh. At first it was the size of a walnut, then a few weeks later my General Doctor said it was about an orange. Now my oncologist has told me it’s the size of a football. I said he had to come up with a better analogy – we were using food. How about a loaf of bread? Pot Roast? Coconut?
The biopsy was held in a teaching hospital. Right before surgery, feeling loose and relaxed they give me one of those forms you sign where they can film and lecture during the surgery so we can teach the next generation. You don’t really know what it means until you meet the cast of Grey’s Anatomy. They look like they just learned to brush their teeth. All shiny and new like Barbie Dolls on Christmas Morning.
The doctor comes out to greet me in the surgical preparation area with his support crew ready to cheer him on or comb his hair. I’m lying there with husband sitting beside my bed trying to look my best with my hair smushed flat in the back and standing up on top. How else do you look lying in bed all day? Of course, my doctor is young, handsome and compassionate. I’m not sure he is real. He gives me his winning smile with the full entourage behind him. He’s reassuring and kind. Through the haze of drugs I hear the ‘this surgery is easy’ speech. Since he uses a football analogy for the mass I expect his entourage to begin cheering behind him. Give me a G! Give me a O! Give me a D! Give me a O! Wait how do you spell that?
At the time, I wondered why he signed my leg. I thought it was rather narcissistic of him. Like he was laying claim to my leg. Who says he can have my leg? Does this give you any indication of the drugs I’m on? After the fact I realized it was so he didn’t operate on the part. Sorry Mrs. Schlosser, the bad news is we didn’t biopsy your football. We bypassed your heart.
They wheeled me into this small room that was supposedly an operating room. The reason I question it is simple. Who paints a surgical room mint? There are no shiny metal or reflective surfaces. Very disappointing for a surgery room. Grey’s Anatomy would redecorate immediately.
Except for the windows. Windows everywhere. And there are bright, shiny faces of young polished people peering through the windows like this is the annual Christmas display. Please mommy, can I watch the cute guy cut into the bloody football?
As I wait for them to begin prep I notice the anesthesiologist playing with a little box on my IV. I decided this is my little happy box. This little box will put me to sleep and take my pain. I really like the little happy box.
Before he plays more with the little box, I get a few moments to look around as they decide how to move to the surgical table. There are cameras everywhere. Up above on the walls. On the table. Either I look really good or this is one heck of a football.
I strain to look over into the far corner and there on the big screen is the MRI of my football. Pulsing away as the beautiful female chief resident scans through the MRI. Surrounding her is the cast. They even carry text books. Staring with intense interest at the screen flipping through their books. Why are they flipping through a book just before my surgery? This can’t be good.
I hear the chief resident listing the possibilities of what the mass could be – infection, benign tumor, and malignant tumor like a sarcoma. The residents seem confused. They flip harder. Sar what? Just when I want to raise my hand and ask a question – they turn on my little happy box.