Great Expectations

It has been more than a month since I went to see my liver surgeon and he recommended surgery.

I followed his protocol, making an appointment for an ultrasound, which took two weeks to procure, followed by 5 days before he called with the results, followed by 5 days before I could get in touch with the one scheduler who schedules his surgeries. She was out of the office for 5 days (he had to know that when he told me to contact her) It was almost a week's time and still counting I may add that I am now waiting for the date for surgery. I left numerous messages, to the scheduler, to the office, to the surgeon, none of which was returned until today almost one month later. I did get one return call telling me it was a holiday and another saying the doctor has yet to return her phone calls. I felt like a crazed women and they must surely think I am.

If Cancer feeds on stress, there is plenty of it here in my body.

Today finally, after I placed two emotional phone calls last night and two this morning I heard back from the doctors' assistant. When I explained my situation she told me she would be upset too. Small consolation for this situation I am going through.

I am always very nice on the phone, no screaming, although God knows I want to, almost no crying hysterically, I have to breath before I call. I NEVER ever get a live person, just a recording promising a call back, which never happen.
I am talking about a big hospital here, it is JEFFERSON, supposedly one of the best this area has to offer. My doctors are the tops in their field. Being on top doesn't necessarily give you the right tools. I am learning that.
There is a major disconnect between the actual practice of medicine and the humanness of the patients.

My idea of health care is just that, the Doctor would help me and care about me and be there for me in some small way. He doesn't have to hold my hand, although that would be nice and show me he is human. He took me on as a patient, but I am finding I am just a number, another set of paperwork, another procedure. What happened to the kindness, the caring, the healing, the understanding?

He deals with this all the time and I would think that he would know a patient is anxious after getting testing, any kind of testing not just for Cancer. Five days or more is too many minutes, hours, days to wait to see if the Cancer spread. I would think he would realize that my days are anxious, stressful, that I want to get this out of my body, that I am relying on him for my life. I am not just another number, another file, another liver. I am a person with feelings and hopes and family, I have a job, I have a life I want to continue living.

Are my expectations too great? am I unrealistic? foolish?

I really don't think so.

This blog has been about keeping in touch with my friends, my clients, my support system, but it also is a way for me to get out of my head what is going round and round. I don't sugar coat anything in this blog, it is what is happening and how I see it and how I feel. Those of you who have followed from the beginning know that.

I needed to sit and write today. I needed to put to paper what is dancing around in my head. To lighten my load, to get it off my chest, to have your love and support because believe me, I get more from the ones who read my blog than I do from my doctors.
And that's a damn shame.

By the way, the scheduler just called, my operation is scheduled for November 3rd, 2012
(just kidding about the 2012 part)

Edgy

I just read somewhere that when you are in a state of "on hold" it can make you feel edgy and in turmoil.

So that's what is wrong with me!

I have been in that state for a few weeks now.

On hold waiting for the liver surgeon to get back to me with results.
On hold as I waited for the scheduler to get back from vacation.
On hold now as I wait to schedule surgery, last week was Rosh Hashnnah, the doctors were unavailable.

I am in some sort of "learning mode" the universe is trying to teach me patience.
It is making me more impatient!

Trying to stay busy, I am leaving no room in my mind to "not think", no room for clarity, no room to listen for the answers to the questions of my soul. I realize now I am narrowly focused, making my life harder, my choices difficult, I need to step back, get a wider perspective on what is going on.

My decisions have changed daily, with me see-sawing back and forth, surgery? no surgery? Although the thought of surgery is frightening, the very thought of NOT having the surgery, letting that spot grow inside me, is even more frightening.

So I called to schedule, but once again I was on hold, it was a Jewish holiday last week and the doctors were not to be found, more waiting but hey I am getting good at this!
Hopefully someone will get back to me tomorrow as promised with some answers.

Dealing with Cancer doesn't come with an instruction video, although I think that might be a good idea. I realize that every person is different, each decisions is personal.
I need to stop, breath, clear my mind and have peace in my life.
That peace of mind will come once this spot is "OUTTA HERE" as Harry Kalas used to say!

I will continue on my healthy path, doing what is good for my body and I will have the spot removed from my liver, just as soon as I can. When I spoke to the scheduler she told me the doctors do this type of surgery only twice a month, every other Thursday and October is booked so this may not come as soon as I thought but at least I will be on the schedule and my mind will have a break from the "business" of thinking and trying to figure everything out!

One leg at a time

Getting dressed this morning I realized, as I put my pants on that I had to step into them one leg at a time. I put one leg in my pants and had to pause to regain my balance before I could step into the other pant leg.

I realize that life is like this. Make a move, a decision, a step, then pause to regain my balance in life, in decisions, in feelings, in emotion, in life and then make the other move.

Only after regaining my perspective, the balance in my soul and in my heart, can I make the other move. If I don't stop to take a breath, to look at what I am doing, how it will affect me and my life, I will tumble.

We all need balance in our lives and going too fast, speeding up the process of life will not do it. We will be wobbly, uncertain, confused and make a hasty and wrong choice.

We need time and space to look at our moves, our choices, our actions, evaluate and then go on.

I am doing that right now.

It is a scary prospect, let me tell you. Sometimes I just want to move fast without thinking, go to the next step without evaluation, just on trust alone.
The trust we put, not in ourselves, but in others, people in authority, like doctors, and people that we put in charge, people that we think know better than us, we trust and we trust blindly sometimes.

I am at this point.

"You Have Cancer"

The three most frightening words anybody can hear. It puts you in a tailspin, turns your world upside down. You are faced, head on with your death.

I did what most of you would do when facing this situation, I contacted the best and most well know hospital and doctors I could, I made all my appointments and followed their every suggestion, when I questioned their methods or drugs or therapy or tests I was told, "This is the best we have at this point"
I believed them, I followed the path they set for me diligently, faithfully. They have my best interests at heart.
My feeling have not changed about that, I do think they are doing the best they can in this current "health system" we have but this pause, this break, this time I had to think while the Liver surgeon got back to me turned my mind to maybe an alternative, a different approach, a holistic approach.

I went through the drugs, the chemo twice, the nasty stuff, the radiation, the medicines that made my body sick, I still have side effects to prove it.

I want to "fix" this with less invasive measures than taking out my rectum or carving up my liver.

It is a scary decision. I want to get this right, I wish I had a crystal ball but I don't, I need to make choices based on information and gut feelings. I want to live, to survive and from what I read and hear, I can live with this.

I can't ignore it, won't go away on its on, I have to "do" something and maybe it is time to take that break between pant legs, pause, get my balance before moving on.
Is it the right decision? who knows? certainly the doctors with all their medicines and study still can't promise or guarantee anything. There are no guarantees, just mindful decisions.

So I am at the crossroads, I will give myself a few months for a "Holistic approach", alternative medicine, kinder, gentler to my body and hope for the very very best.

GRAZIE

Grazie

A word that sings, a melodious sound, GRAZIE, a lilting beautiful word.

A joyful sound, GRAZIE, filled with vowels, in the Italian language you pronounce each vowel. So this word literally sings as you say it.

Grazie, a word you should say every day.

A simple THANK YOU for all your blessings, for all the little things in your life, for everything you see, hear, smell, touch, taste each and everyday. Grazie for all your blessings, Grazie, for all lessons in life, sometimes difficult or sometimes simple.

Grazie, a acknowledgement, a knowing, that we are where are suppose to be, that everything happens for a reason, a knowing that it will all work out, no matter what.
You are loved, you are blessed, you are lucky.

When things are going good in your life it is easy to be thankful. It is when things get hard, when the unexpected happens, the unbelievable occurs, something horrible happens, we lose a loved one, we get sick, we feel helpless, then it is hard to acknowledge all the positive that we still enjoy.

If you make time to be grateful each and every morning for all that you have, all the good in your life, the obvious and the small tiny things that we forget to notice~ sunshine, raindrops, smiles, comfort, friendship, family, support and laughter.

Be thankful, be aware, be grateful~Grazie.

No matter what, we all have things to be thankful for.

Make time in your life to be grateful, make space in your day to say thank you. It will change your perspective, allow you to see the good and know it will all be OK.

GRAZIE, say it daily, whisper it in your mind, feel it in your heart. It will help you through this journey we call life. It will ease the way, heal your soul. It is a magical word.

GRAZIE

Breathe

OK, I finally received a call late Tuesday night after 6 PM.

My liver surgeon was on the phone all of 3 minutes.

"Your results coincide with the MRI and yes, there is a spot on your liver, right under your rib cage and it is on the surface."

ME~"OK, I want to schedule surgery, do I need an EKG? blood work? when can I have it done? what day do you do it? how long will I be in the hospital? how long will I not feel like myself?"

"You have to call the scheduler, here is her number she will take care of everything." OK

Next day bright and early I call the person who schedules the surgery, the one with the answers, guess what? she is on vacation this week UGH!!!!!!! Her message on the phone said~
"I will be out of the office Wednesday, Thursday, Friday, Do not leave a message, call back Monday. 

On hold once again!

My lesson is to breath right through this and cook.
Lots of food around here lately!!!!

Just another liver

It is Tuesday morning and my test was last Thursday, despite several phone calls to the office I still have not heard back from my doctor or even just someone in the doctors office.

I am not sure what is going on and several scenarios are going through my head ~ is it good news so he doesn't have to call me right away? is he too busy with sicker patients then me? if I call and get mad will he not be nice to my liver when he does operate? although irrational, this is what is in my mind.

What I can say, is that I was pretty worked up yesterday and all through the weekend, today I am calmer. Why? I haven't a clue other to to say~ maybe I am not a person to him but just another liver!

I am sure he is an excellent surgeon, that is why I went there in the first place, maybe he is just not a people person, can't put himself in my place, or maybe he feels this news isn't relative to me. This test was scheduled to give him a "roadmap" of my liver so he knows where to go when he operates. Maybe the "roadmap" is none of my business, maybe maybe maybe, who knows. Since I haven't talked to him this is all speculation on my part.

So today I am choosing, after another call to the office this morning, to just breath and forget about it, can't be too serious if he hasn't called? right?

I am writing this to get my feeling out, that always helps me and now I will go and cook up a storm, when he calls~ he calls, in the meantime I'll have some good food to eat in just a while!

There should be a law

This past year and a half have been full of tests, which translates to a waiting game.

It makes me anxious to say the least. Try as I might I am nervous before and after. I keep busy, I breath, I read, I do other things to keep my mind from going back over and over again to what ifs and why, along with could and should and would, running different scenarios in my head like a broken record.

The doctors that schedule these tests know I am getting them, have the results on their desk in record time, promise to call and seldom get back in a timely manner.

If I sound frustrated that is because I am.

I had an ultrasound of the liver scheduled on Thursday morning, first thing at 9AM. We left the house at 7AM, sure to get there in plenty of time, nothing to eat or drink after midnight, God only knows why, it is my liver after all. When we arrived, the first ones there, I was told, Oh no, you could have eaten ~ they made a mistake. OK no coffee for me which was not a good thing.

After waiting at least an hour, I was taken into the room. They did the test,"wait here the doctor will be right in to go over your findings" good, I thought. Half an hour of waiting the girl was back in, "sorry, the doctor was called away, can you come back at 1 o'clock?"~are you kidding me, kill 3 hours? I had a cooking class that night and did not have time to wait around.
"No problem she said, doctor will call you at 1 PM to discuss the results."

1PM came and went and so did all day the next day, still no call, still no results.

I try to stay calm, I try to stay optimistic but I do think there should be a rule, a law, a common courtesy~ people who get tests and waiting for results are on edge, it consumes you, you have a hard time thinking of anything else. A whole weekend will go by with me being crabby, grumpy, teary, and short tempered and not sleeping particularly well. Not the way I want to feel.

There should be a law! Doctors, try to put yourself in our place, to you it is routine, to us it is our lives.

Sorry ~had to get that off my chest!!!!!