Saturday, October 30, 2010

Beautiful Fall Day

I have been waiting to feel better before I write this blog.

My chemo doctor gave me a week's break from the chemo. I will go in on Wednesday for my infusion.

He called me yesterday to see how I was feeling and I thanked him for my week off. His response was that there was no way he could give me chemo with my blood work that low. My white count was more than half what it should be and that is what is causing me to feel like this. Well it was a validation anyway.
I have been down for the count for more than 2 weeks. Even on Wednesday when I came home from JEFF I went right to bed, I had a very bad night with the runs, I must have gotten up at least a dozen times..... not fun at all so consequently I was in bed all day Thursday too.

This is very hard for me. I am a doer and a mover, to be in bed all day no matter how bad I feel is torture.

The good news is that today Saturday I am starting to feel a little better. I woke up early and went to my "Voodoo Room" as Clint calls it. It is my space, a room that I purged of all unnecessary stuff, a room where I have a rocking chair and a mat to lay upon when I want to stretch or meditate. I love this room. It is full of light and hope for me. I spent a quiet hour or so just writing by candlelight. It was still dark when I woke up this morning.

When I write in the morning it is called Morning pages, I have been doing this for years and years and it helps clear my mind and clarify my thoughts and dreams. I take a pad of paper and just write what comes to mind. Your mind is a busy place and to do this every morning is a wonderful thing. I always feel so much better when I stick to this routine.

I went outside after my morning coffee with Clint to breath in the beautiful Fall weather and take in the brilliant colors that Autumn has given us. It is a perfect fall day and I am so grateful that I can enjoy it from someplace other than my bed.

So I am taking one moment at a time. My mind does race ahead to what is in store for me, it is only natural but I try my best to stay in the moment. My friend Sarah tells me to come back to my breath, it is always there for me, to center me and calm me and reassure me that life will go on no matter what and that this moment is my life. I try not to take too much of the past with me too, it is over and there is nothing to do about it.

So I hope you all enjoy this beautiful weekend, Take a moment where ever you are to stop and just listen to the sounds around you. Take a deep breath and look at the trees, the birds, the sky. Splendor is all around us. Live in this moment. Enjoy who you are with or just being by your self. Take a minute to smile at someone, you never know what is happening in their life, give them a smile or send them positive energy, it will come back to you.

This is a journey that is teaching me so much. It is not a journey that I chose, but here I am non the less. I will grow from this and be a better person. I will appreciate all that I have in my life and learn to slow down and enjoy it. 

I hope you enjoy your moments in time too!

I am sending all of you love and energy, thank you for being on this journey with me and being in my life. I feel the love and prayers of all and I am thankful.

Wednesday, October 27, 2010

All day rain

I woke up sometime in the middle of the night to the sound of rain out side my bedroom window.

My first thought was " all day rain" .... it is a term Clint uses for the sound of rain that is slow and steady and you can almost know that it will rain all day. Over the years I have come to know the sound of all day rain too.
As I opened my eyes I realized that this morning would be Chemo day. I was not looking forward to it at all. 
I have been so very sick all week .. for the last two weeks really. Hardly being able to get out of bed. The thought of not feeling good or worse for another two weeks loomed in my mind. I didn't want to do this.
But I knew I had to do this. So I concentrated on my breath and on this "all day rain" kind of day with the beautiful colors of Autumn that are streaking the horizons. I thought of coming home around 6 PM and getting in my comfy bed. I thought of this moment, this beautiful rainy day.
We went down town early as usual. I had my labs drawn so they could check my counts. I went downstairs to see my chemo Dr.

I told him of my last two weeks, mouth sores the size of Kentucky on my lower lip. If I ever wondered what I would look like if I had my lips done ~ I don't have to wonder any longer, cramping of the hands and feet, the runs and I do mean RUN!  My list was long and he was very sympathetic. I was sent back downstairs to the infusion center to await my lab results and start my infusion. My port was already accessed because that is where they draw blood.

In a little while the chemo nurse came over with a paper in her hand and said that my platelets were dangerously low and that I would be very prone to infection( oh goodie!)

She had to call my doctor  to see what he wanted to do. She came back a little while later with such wonderful news!!! No chemo for me this week! a reprieve!!! hurray!!!!And so I get a week to recover and feel good ~ wonderful, releasing, uplifting news. What a surprise, a present really. So we drove home in the rain, stopped for lunch at our favorite little place. After I write this I will go to bed because I am still tired, but I will fall asleep to all day rain and know that I will start to feel good soon.

Friday, October 22, 2010

Luke's Lemonade Stand

Help is coming from all directions!

A few weeks ago my little nephew Luke along with his twin sisters Luci and Ella set up a Lemonade stand in front of their home in Swarthmore. It was a rainy day but Luke persevered for 4 hours and collected money for Cancer awareness.

It was a touching gesture and one that hit close to my heart!

Thank you Luke, Ella and Luci!

Thursday, October 21, 2010

Ah Ha moment

I am slowly coming out of this fog I have been in since last week. I spent so much time in bed I felt like I was living in my bedroom. Clint brought me up buttered toast.. some of the only food I can get down. The chemo hit me hard this time around.

As I was laying in bed I had a "Oprah" Ah Ha moment...sort of.

I realized what the Doctor meant when he said these symptoms would be cumulative, each week longer and longer to get out of my system, each week a little worse for wear. I know that if I am seeing these tell tale signs of achy-ness, soreness, fatigue, giant mouth sores and I do mean giant!! among other things that these drugs they are giving me must be doing something to the cancer cells!!! I can only hope that this is true.

I questioned the number of treatments I am to get and my Doctor told me that after the next one on October 27th, he would order tests to evaluate how the chemo is working and then either order more treatments (yea) or give me a break (I hope) .

So I go with the flow. What else to do? my hair is shredding a lightning speed. Everyday there is a little less to pull back. My grand kids are so funny. They tell me that my hair is everywhere and that soon I will look like Pop Pop. I have hats and scarfs at the ready. I am always cold and walk around bundled up like there is a snow storm in January outside my window.When I wake up in the morning and look in the mirror I can see a resemblance to Gary Busey's line up picture, where his hair is sticking out all over his head, I can do nothing but laugh!

Every night before I go to sleep I breath and try to think of all the good I have in my life. I am so thankful for all the support I am getting. It makes it much easier knowing that people care and are praying for me and that they can't wait to take a cooking class again. I hear everyday from clients, some I met only once, who tell me that they cook from my cookbook and that they believe in me and know that I am a positive person.

I am thankful for my family, all worried about me, telling me that I am the glue that keeps my family together. I get to know all this right now and I am so happy to know that I mean this much to them.

I am thankful for my home. It gives me such comfort. Every room in my home is special to me. I feel warmth and love in every doorway.

I am thankful for all the food left in my doorway. My friends want to feed me and Clint and I am overwhelmed with your kindness.

I am thankful that I have a loving and supportive husband, who tells me every single day how good I look (I think he may need to get his eyes checked) and how good I am doing despite feeling lousy.

I am thankful for my kids. They keep in touch every single day with encouraging words and so much love. It makes me realize that I raised them right, they turned out to be such wonderful parents to their children and that makes me so happy.

I am choosing to look at the joys in my life, which are many.
I will get through this time. It will make me stronger. I miss my cooking classes and all those people who walked through my doorway with a smile on their face and the inspiration to cook. I can't wait to get back to that again and I know I will.

This is not easy, I will say that. The hardest part for me is not feeling like myself. The girl (I still think of myself as a girl!) who is always doing something, cooking something, creating something. This girl is now in bed only dreaming of when I can be myself again.

I am learning the real meaning of this moment in time. Right now. This is my life and yours too!
Take a minute or more everyday to see what you truly have in your life. Be grateful, be happy, look at the world as a present. Your life is yours to make what you what. Don't put off your happiness, tell someone you love them, tell someone you are sorry, smile at a stranger, give hugs and kisses throughout your day. Be happy now! don't wait~ you don't know what is ahead. This moment is what you have and use it with graciousness and happiness.

Once again I am humbled by this fickle disease but I remain hopeful and optimistic that this will pass and I will be me soon!

I love all of you and thank you for being in my life. It makes such a difference to know that good thought, prayers and healing energy is coming my way and I thank you!

Sunday, October 17, 2010

Oh well....

I hate to think that I knew it was too good to be true but that is how I feel now.

Friday afternoon brought sleep and wow did I sleep .. it is Sunday Morning and I just crawled out of bed and I mean that... I can hardly make it out of the bed I am so exhausted! Along came all of the other side effects to join the party, mouth sores, my fingers are so numb this is very difficult to type, I have a headache, sore throat, bleeding from my sinuses, pure exhaustion, constipation and yep diarrhea ~funny to have both of those symptoms!! I feel sick and I guess I am sick, these drugs mean it! I hope they are going after the bad guys as well as the good guys!

Just wanted to write an update... just wanted to get out of bed for 10 minutes... but I am going back.......to bed.

Friday, October 15, 2010

Wow~ Feeling good!!!!!!

I had my third cycle on Wednesday. As usual they gave me a steroid before the infusion as well as an anti-nausea and vitamins too.
I had a good but long day down at Jeff. The nurses and those who work there are very nice and so kind. So my day was very pleasant. Clint took his normal snooze, my friend commented that he could probably sleep on a rope! and I think that may be true! that guy can fall asleep anywhere!!!

I woke up yesterday tired but not nauseous and no mouth sores! yea!!!
It was a perfect rainy day to sleep and I did off and on throughout the day.
This morning I woke up feeling normal!!! How about that! It is a wonderful feeling! I still have my chemo pump attached giving me one more drug but that gets disconnected this afternoon. I am so happy to feel like myself! It is a gift on this beautiful fall day!

I have to say that I had a wonderful conversation with the nurses about cooking. They know what I do for a living and that I have a cookbook and that brings everyone around in my cubicle to talk about food! It is a universal subject and one that I love to talk about! I started off giving them recipes for dips and soups and just about everything and I have to say that I really do miss my classes, this is usually my super-busy time teaching classes and catering. I miss it! I miss the lively classes and everyone laughing and sharing recipes and getting inspired to cook again in this beautiful Autumn weather, perfect for comfort foods~ my favorite kind of food!

I am experiencing Neuropathy, it affects the nerves in the hands and feet... so my hands tingle like they are asleep and my toes and fingers cramp and are super sensitive to anything remotely cold. Makes it kind of hard to cook! Also my taste buds are pretty much shot... nothing tastes right ~another reason making it hard to cook. So although I do miss what I love to do, I know it will be waiting for me when I get better.

I questioned my doctor about the number of cycles of chemo I am to get and he said that I will have another in two weeks and then a series of tests to determine how the drugs are effecting my tumors and then we go from there.... either more chemo or they will schedule the operations.

So I think there is a plan in place which always makes me feel better! I will enjoy this beautiful day and my feeling good!
Thanks so much for all the prayers and white healing light and e mails and cards and food and flowers... they are all making me feel so very much loved!

Wednesday, October 13, 2010

Ready?

It is early in the morning on Wednesday, I am having my cup of coffee in the dark. I woke up a little earlier so I can get my head together for today.

Am I ready? Well I am not sure if you can ever be ready for chemo.

I started to feel like my self yesterday. Funny the day before infusion.

Today I go in knowing I will come home feeling sick.
But the feeling sick part is the drugs doing their job, so I know they are working.

As I was falling asleep last night I tried to turn my thoughts to what I have in my life and how lucky I am to be surrounded by so much love and support. It worked because I slept really well!

So chemo here I come.

Tuesday, October 12, 2010

Mom

My mother turned 82 this past week. For her it is just a number.
A bundle of energy with enthusiasm for life, my mom has always been a role model for me.

She is the youngest of three children. Born in the US but lived all her life in a very Italian neighborhood where everyone spoke Italian all the time. Her parents were married in an arranged marriage. Both parents came from Italy to this country in search of a better life. My grandparents did not know one another and spoke almost no English. My grandmother was the head of the House hold. She was a fabulous cook and could make a dinner from any ingredients she found in the fridge. My mom says I am a lot like her. My grand mom passed when I was just 3 years old so I never really knew her, but my mom has many of the traits that I think made her the strong women she is today.

Always adventurous my mom took the El into to town as a young girl and tried all sorts of "foreign foods"(anything that was not Italian) that her friends would never think of eating.
She had and still to this day has no trouble dining alone. Although my mom doesn't drive she gets around. She is a big fan of the casinos and her specialty is not the slots... no no no she loves to gamble and plays craps, though she hardly reaches the tables.. roulette is another favorite and she has been know to win big, although when you ask she always says she came out even.

My mom was a stay-at-home mom, as a little girl I always had a hot lunch when I came home from school and our house was a gathering place for my friends. There was always something delicious simmering on the stove and we had frequent guests for dinner (all my school friends). 

The support and love I feel from my family is a very real force in my life. I grew up in a happy house.  My parents marriage was also arranged. They knew each other for less than a month before they married.
My Dad came by boat to this country in the last months of 1953. He met and married my mom in January 1954 and I was born in November 1954. Although they hardly knew one another, our family was a happy one. Good food always on the table, family outing each Sunday to Longwood Gardens, Playtown park, Atlantic city's Steel Pier. We did everything as a family, often taking friends with us.

Growing up, my mom would take me downtown to Wanamaker's to go shopping.
On Saturday mornings we would take the El in town and spend the day together. It was always an adventure. To this day my mom will go anywhere at any time and is a force to be dealt with when shopping. She has an enthusiasm that just won't quit. She is the source of all family gossip. Just tell her a secret and not to say anything and everyone in the family will know the news within an hour!

She has helped me in so many ways to grow and be the person I am today.
My mom and dad live a half a block away from me and I talk to her and see her daily. It is a gift to have her in my life. Her strength is contagious and her humor infectious.

Happy 82nd birthday Mom~ I love you!

Saturday, October 9, 2010

Hair Beautiful Hair!

Hair beautiful hair, gimme head with hair
Long beautiful hair, Shining, Gleaming, Streaming
Flow it, show it, long as God can grow it
Hair beautiful hair
Flow it show it, let it fly in the breeze
Hair beautiful hair

If you are a child of the 60's and 70's you know this song from the musical HAIR.

This is the song that has been in my head since I started seeing those silver and black dust bunny balls of hair all over my house.

I have a long relationship with hair and not just my own.

When I graduated high school back in 1972 I started working at my Dad's barber shop.
My dad came to this country from Italy in 1953 and soon became a barber. He also became a barber teacher so consequently all of his 4 children were taught to the skill of barbering. My father rightly assumed that if we had a trade we would always be able to work. So in my 20's I worked as a barber, cutting hair, doing straight razor shaves, competing and winning in Hair Competitions all over the East Coast and I even went to Royal Albert Hall in England for a world competition in 1981. I also studied and became a hairdresser bringing perms and coloring to my Dad's old fashioned Barber shop in Collingdale. It was there that I met Clint, I cut his hair! to this day I still cut hair~my grand kids, my kids, my husband and my Dad. A barber chair sits in my basement.
In my time I have swept up many a pile of hair in the barber shop.

Sweeping up you own hair is a different story!

My hair is naturally curly, when straight hair was in I ironed my hair or used globs of dippy do and rolled my hair up in orange juices cans or the biggest curlers I could find to make it straight. I finally gave up and let it go natural. I was never sorry. My hair was effortless, wash and go. For years I also colored my hair, hennaed my hair "South Philly Red" Clint called it! I finally decided to let the silver come in and I loved the way it looked!

As you can see I am thinking about my hair a lot these days. No matter~ what it is a difficult thing to lose one's hair. I was lucky the first time around with my chemo, it thinned and the texture changed but I still had hair. These drugs are much stronger and although my doctor did not commit to saying I would loss my hair, it is falling out and shedding with lightening speed.

I try to joke and prepare my grand kids saying that I will look like Pop Pop soon.  That my son in law Rick and I will be twins. The humor works sometimes but I still have a knot in the pit of my stomach for the moment when I wake up and look in the mirror and look like I have Cancer. I think that may be what is bothering me most, that I will LOOK sick. That I will look like I have Cancer. Well no, If I am honest it is the fact that I will be bald and that I hate hats and wigs and scarfs and that I have always always had long hair... Always!

My life has a new reality now. One I can't control. I need to go with the flow, realize after all it is JUST hair and it will grow back and that this is a small price to pay to get better. I know all of those things in my heart but it is still hard.

After my last blog so many of you have sent me notes and e mails and cards showing your support and love and cheering me on, making me laugh and offering suggestions for wigs and scarfs and hoop earrings and I am so grateful for that.
 
This too shall pass. I know this in my heart and I feel the love and support of everyone around me.

Clint even bought me a beautiful pair of dangling gold earrings made in Italy. So I think I will try to find some fun hats or maybe a leopard scarf, I am Italian you know and I love leopard prints!
I will get through this part, maybe with a few tears for my hair but in the end getting better is what matters most. And I do plan to get better!!!

Halloween is right around the corner, I am sure I can find some funky things to put on my head!

Hair Beautiful Hair!

Tuesday, October 5, 2010

Sleeping Beauty

That is who I feel like.. I had no idea I could sleep that much!

Thursday loomed with every side effect I could possibly have along with the feeling of tired tired tired... no other way to describe it.

I feel dis~ease, mal~testa,(sick in the head like my dad says) sick sick sick ... I can't drag myself out of bed, nausea, upset, yucky, chills, hot flashes, mouth sores. Now I don't want to depress you or me so I'll stop with the descriptions now but I think you get the feeling.

I took all the medicine the Dr gave me for side effects and I got more side effects! whoopee!

Another thing that scared me to death is my hair.. my long beautiful salt and pepper curls .. coming out in globs!!!! My first clue was finding little fluffs of my hair in the corners of my rooms... I looked down and thought "what the heck is that" on further examination I realized the colors of these hair balls were black and white. Now I don't have a cat or a dog .. just birds and these definitely were NOT feathers... my hair!!!OH NO!!!!!!!!!!!!!!!!!!!!!!!!

I guess I'd better start looking for big hoop earrings and maybe some sexy(???) scarfs? a wig?? I don't even like to wear a hat! how the heck am I going to put on a wig!!! I wake up in the morning and the first thing I do is check to see how much hair is on my pillow. I am afraid to touch my hair less it comes out faster! gotta find the lesson in this~ any suggestions???

Chemo fog is the right description for how I feel .. like I am in San Francisco on the Golden gate bridge ( I wish) in the middle of a heavy fog. No clue to what is happening to my brain but hope it clears up soon!

When I first thought of writing this blog I wanted to cancel cancel..Thursday, Friday, Saturday, Sunday and maybe Monday but then I thought oh no~ that is still my life.. I can't cancel those days !
I slept through them anyway! glad my bed is cozy!
So this is my update... hope I feel better soon and don't wake up looking like Don Rickles with a shiny head.

Any encouragement is welcome!!!!