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!!!!!

Clutter

When you hear the word clutter you immediately think of piles of stuff stashed in corners, on chairs and exercise equipment and in closets. Stuff hidden away, no longer in use but hard to give up.

The thought of "you may need it someday" is ever present.

As this past week brought rains and cooler temperatures I decided to declutter my house.

I started one room, one pile at a time.
I went through closets and drawers. I thinned out my clothes, my dishes, my old pots and pans, I cleaned out my fridge and kitchen cabinets.
I hauled trash bags up from the basement and down from the attic.
I organized and took stock, realizing that I have a lot more stuff than I could ever imagine.

Along the way, while my hands and body were busy my mind was a busy cluttered place too.

I had one of those "off" days yesterday when everyone I met was in my way. I was annoyed by the slightest little things, a car pulling in front of me, an elderly lady driving a car that could not back up, a phone call that made no sense, I was inpatient and grumpy. I was short tempered and mad. At everyone including myself.

All sorts of thoughts have been creeping in my mind and this morning as I sat in the quiet darkness I realized that I needed to declutter my mind, my head, my thoughts.

I needed to get rid of the words that float through my consciousness that do not serve me.
The messages I send myself that do me no good.
It was time to clean out the closet of my heart, mind and soul.

This is tougher than it sounds. When you do a physical cleanup, you take out the trash, put it by the curb and it disappears. Your mind has a tendency to let bad and unsettling thoughts back in! I want to put them in a trash bag and take them to the curb with my unwanted stuff!

Even with the best intentions an off day can be just that. Each and every circumstance I was in yesterday brought me turmoil. I was aware of it and tried my best to turn it around, to think of something good, something useful. At the end of the day I realized that although I fended off most of the bad feelings~ I was still not myself and everybody had better watch out! what did I do? I went to bed at 8:30 hoping that when I woke up I would be back to my old cheery self.
It worked, sort of.

I woke up to a new day, a fresh start but I still needed to declutter my mind, get rid of those thoughts that were bringing me down.
I sat in silence, concentrating on my breathing and nothing else. If my mind wandered I listened to the sounds of the trees, the patter of the rain drops, trying to empty my mind, clear my head and feel good again.

We all have these days, the times when nothing seems right, when everything bothers you, when you feel down and gloomy.

It is OK because as we know, not everyday will be perfect.

Realizing this is half the battle. Give yourself some time each day to take out your mental garbage.

Lighten your load, take a deep breath and let all the bad out with the air!
Change your thoughts~one corner of your mind at a time. You will feel lighter, happier and soon you will be smiling, I hope!

What I know for sure!~ maybe!

I can wish it away, I can meditate it away, I can ignore it, but it always sneaks into my consciousness. Stress, that dramatic, nagging, good for nothing feeling of stress.

Two weeks worth of doctors visits and tests and more tests. Waking up at 3 AM, eyes wide open, heart beating fast, wondering what the heck is going on. Breathing my way to a peaceful place each and every chance I get.

Friday was my last follow up. I can now let out a sigh of relief.

A visit with the colon surgeon was everything I expected and more. (Remind me to pick a colon surgeon with small hands next time! he has hands like a catcher's mitt!) He did manage to sit and talk to me before and after his extensive exam, but the man wants to cut. He actually said "I am a surgeon, that is what I do."
As he was looking feeling and probing, he kept saying "Susan, you are a problem"

My problem being that there was nothing there, nothing to see, nothing to feel and let me tell you, it was not from NOT TRYING! He was on a treasure hunt! (sorry~ humor helps me!)

When all was said and done and I was upright again, he said "I can take out your rectum" WHAT!!!???

First time I heard that, before it was just a piece of my colon, now he wants the whole sha-bang! For the life of me I can't understand why he would want to do that and I asked him point blank." I want to be aggressive, you are young, you are healthy and you responded wonderful to chemo, this would be an aggressive approach."
When asked if it were his wife instead of me, he said he would do the same thing but "boy would she be mad if the pathology report can back negative."

I'd bet she would be! So would I!!!!

I was so flustered when I left I forgot to ask him if he would replace my rectum with a new model, or don't I need one or what!?!!?

My other option would be just to keep an eye out, meaning coming back for tests every 3 to 4 months, which is what I have to do anyway for the rest of my life. He doesn't suggest a biopsy to confirm if there is Cancer there, he wouldn't know what to biopsy because he can't see anything there anymore.

My next visit was to the liver surgeon. He was a little more direct in outlining my choices and there was no exam so I wasn't so stressed.

Once again, he gave me choices. Let both liver & colon be and just keep an eye out, go in a take out the spots on the liver or have the major operation with both surgeons there at the same time to take their turn. He defended taking out my rectum, stating that it is the most direct and aggressive approach I can take. Although he agreed that it is major surgery with risks involved and a colostomy, which may or may not be reversible. (What fun!)
He told me to enjoy my holiday weekend. Yea, bring on the vodka and cranberry!

If I decide to take care of the spot on my liver I need to get an ultrasound to give him a map of my liver, this will determine how he goes in, whether lapriscopically or with a larger incision.

Although, they both suggested I take my time in making my decision, before I left the office I knew what I wanted to do. I go with my gut (is that a pun or what?)

I feel great, I feel like myself, I have my energy, my ambition, my enthusiasm for life is in full swing. I feel too good to be sick.
So I am going with just the liver, door number one please.
In two weeks I will go for the ultrasound of the liver, my operation will be minor instead of major. I will be back on my feet in days not months. I feel at peace with my choice.

I am living my life one moment at a time. One glorious day at a time. Enjoying every second, every task, every smile. I savor and relish my home, my friendships, my family, my cooking, my work. I love my life. I am optimistic always, this is a good thing!

Thank you for all the wishes and thoughts and prayers.You are on this journey with me and I am so happy I am not alone.

The Earth is Trembling!!!

Center city Philadelphia is not the place to be when an earthquake decides to roll through.

I had my appointment with my oncologist today. Not sure which was more earth shattering, the quake or my news!

I woke up slightly agitated this morning. I didn't have to wonder why.

I was headed down to Jeff to meet with my doctor. This wonderful man made it a point to call me after each and every test last week to read my results over the phone and try to make sense of all the numbers and gibberish that I didn't quite understand. Today I was meeting him face to face. I have not  met with either surgeon yet, as they called to reschedule my appointments until next week. I won't have the full picture until then.

As we were leaving the house I checked myself in the mirror and the white of my one eye was completely red with streaks of blood, it still is. When I had my pressure taken, it was much higher than normal. I usually have a very low blood pressure number and the doctor attributed it to my nervousness,"white-coat anxiety", that will give you an idea of my anxiety level~"red alert!"

I made my rounds through the infusion floor, hugging all my chemo nurses and saying hello to everyone I know. "You look great" "Love your hair!" Everyone was so sweet.
My doctor came in and sat down, I love that about him. He is there until I stop asking questions, his focus of attention is on me. Which I really appreciate.

We went over each and every test, he gave me a copy of everything and we went step by step.

While there is an increase in the spot on my liver, he takes the reports as good news. The Cancer did NOT spread! There are no new spots or tumors. He made several points: my blood work is all normal, even my CEA which is a big factor was till the same, I feel good, actually I feel so good it is very hard to believe this is still in my body.

I look good, I am told this over and over again (Thank You).

He told me we have to look at the whole picture and treat each symptom individually. So I will meet with my liver surgeon next Friday and decide the course of action about the liver.

The PT/CAT scans showed an increase of activity where the tumor was in the colon so I will meet with the colon surgeon on Wednesday and have an exam (can't wait) and we will make a decision about that too.

Although I am still up in the air about all of this, I came home feeling optimistic.

He told me I am an informed patient, a good patient, a sophisticated patient. I am keeping an eye (granted a bloodshot one) on my health and tests, gathering all the information and making informed decisions. He feels positively and consequently so do I.

So we left with optimism, amidst an earthquake.

I will meet with both surgeons next week and then decide on a course of action. It can be wait and see attitude as well as a more aggressive attitude.

One thing he did tell me today when I asked him point blank~"Am I being stupid?" is that he can tell that keeping my life as normal as possible will have the best effect on this disease. He knows my work, my classes, my trips are important to me and he reiterated this over and over, saying we will work around you, keep doing what you are doing, it serves me well.

That is the best news I heard all day!

Uncertainty

This week is an emotional roller coaster ride.

Tests, needles, radioactive dye shot into my veins for two days, thoughts that I try to keep at bay, emotions that I try to keep under control, tears that I close my eyes tightly against. I am trying my best to push it all away, not think about it, not think too far ahead, trying to enjoy just the moments, trying to breath through the fear.

I woke up early to write, that always helps me clear my mind. Today it brought things into focus.

I sat by my window as a storm raged outside, thunder and lightening and heavy rains were my companions as I scribbled on my pad of paper. I sat in stillness and let the rain wash away my thoughts, clear my head, open my heart, loosen the tightness lodging there. It is a temporary fix I know.

My oncologist has a heart. He knows I've been getting my tests, he knows my appointment with him and the other doctors is not until next week, he knows the anxiety and stress these scans produce. He calls me everyday with results, so I don't have to wait in silence.

"The blood work is normal" he tells me, nothing is elevated, all my numbers are good. A big sigh of relief on my part.

"The next day brought unwanted news from the MRI. "The spot on your liver has tripled in size" he tells me. Once the size of a dime it is now a silver dollar. Funny, but on my desk, right in front of me is a very old silver dollar, edges worn smooth, the face almost gone, minted in 1885, it is a silver dollar that my father carried with him since he came to America in 1953. I remember it as a child, always in his pocket, a good luck piece, to remind him that he was always wealthy no matter what. My mom gave it to me a few years ago and it sits on my desk, front and center. I look at the silver dollar and now know the size of that spot on my liver.

Yesterday was the PT/CAT scan, today at some point I know the doctor will call.

My stomach is in knots, no matter how hard I try to calm myself down, make light of it or wish it away.

Did I expect good news with Cancer? did I expect a miracle? My answer to that is YES, I did. Why would I expect the worst, think bad thoughts? It is not in my nature and does not serve me well, and so my optimism was up, my hopes high. At this point I don't have the whole picture yet and when I do I will go from there. I know that worry never served a good purpose, doesn't change a thing and does me no good. I will gather all the info and make decisions then. I will go on with my life, make plans, make love, make food.

As a matter of fact that sounds like a good plan to me.

“Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude.” ~Denis Waitley

A Meditation of Beets

My anxiety level was high, for a number of reasons, although I have been successfully denying this disease that I carry in my body it is time to take the "TESTS."

I have been off chemo for the summer. I decided to wait to have any operations, I made a deal with the doctors that I would return at the end of the summer, end of July is what they said, to take the tests.

Here it is the middle of August and I have an appointment almost every other day for something or other. So stress level is on "High Alert" as they say at the airport!

A few things, minor things put me over the edge today and here I was shaking and near tears, I need to calm myself down, distance myself from the drama that everyday life provides and quiet all those crazy voices in my heart and in my head.

It was too early for a vodka and cranberry, so I thought I would go sit in my voodoo room to try to get myself in a better place. I thought if that didn't work, I always can try the vodka.

The only problem was the beets.

I needed to roast a mountain of beets.

So instead of going up to my room, I went into the kitchen. I piled the tiny ruby beets on my counter, took out a variety of peelers, a knife and a cutting board.

I started peeling, on about the 4th or 5th beet I realized I was gripping the peeler and scraping the skins so viciously off the beets, it was as if the skin was 2 inches thick. My shoulders were crunched near my ears, my heart was still beating fast and my head was full of crazy nonsense, one thought after another circulating like buzzards on road kill.

I took a few deep breaths and concentrated on the beets, actually the beet in my hand, I dropped my shoulders consciously and watched myself peel, I slowed myself down, I looked at the shape of the beet, the way if I relaxed my grip, how easier it became to peel them. I looked at the beautiful beet red colors, sometimes rainbows with a white whirl, like a candy cane. I diced them carefully and methodically, holding each one like a precious globe.

I was in the moment. The moment of beets!

My heart slowed, my mind was filled with how to peel the beets. I realized that I made a meditation of this simple act. By paying attention to only what I was doing, bringing my thoughts to the color, texture and feel of my act, I had released the anxiety and calmed down enough to come up to my desk and write this blog.

I haven't written in a while and that is because the words wouldn't come. I tried several times to write a blog and it just wasn't happening.

No matter how much I try to push this away, these next few weeks will be very stressful.

Maybe I'll eat a lot of roasted beets!
Along with a vodka and cranberry with lime!!!