A Shift in Expectations....... with a Little Help from My Friends

As is evident by my last post I am struggling with my expectations. As I said in that post not having a frame of reference has affected me. It's left me unable to get a handle on what was realistic. The comments on that post really helped me realize the errors of my thinking. There were definitely aspects of my disease that I had forgotten or didn't realize the trauma they represented that in turn have affected my recovery. Then I remembered a friend who had experienced a debilitating illness and I remembered wondering why it had taken so long for her to recover. I decided I would call her for a healthy dose of perspective. It was a very helpful phone call. While her illness was different from mine, her body's response to her trauma was similar to what I experienced. That helped me see I am expecting way too much of myself and that in turn is hindering my recovery. I don't like the little bits of work I can do each day or the days I can do practically nothing but I do now see it's not something I have control over. I now get my lack of motivation is not some character flaw but a measure of my healing. Trying to push through it is not making me stronger. It is slowing things down. Patience may not be my long suit but I'm going to have to figure out how to muster up enough to get me back on my feet for real. I can clearly see my lack of it has made me my own worst enemy. I'm hoping I can get a real handle on it so I can put this portion of my life behind me sooner instead of later.

What's the Hold Up?

I began this blog with the intention of documenting my journey with my disease. I knew at the time denial was my constant companion but I had no idea how strong it's grip was on me.

Denial can be a good thing. It's Mother Nature's way of protecting us from overwhelming feelings until we are better able to cope with them. It's a short term fix for unmanageable pain. I figured it was the magnitude of this event on my life that had denial attached so firmly to my hip.

Denial can be abused, just like any drug, to avoid processing feelings at all. Unresolved emotions don't just disappear because they aren't convenient. They grow and fester causing new sets of problems. The more unresolved feelings stuffed, the more out of control one's life becomes.

I get all of this in my head and normally I'm pretty good at processing my feelings but this cancer stuff has me caught. I don't know if I'm coming or going and I don't know what to think or feel about my disease. More importantly I have no frame of reference for what's appropriate healing and what's not since most people's experience's with diagnosis and the resulting surguries don't spiral out of control the way mine did.

My tumor was graded a two. The oncologist said that meant there was no point in chemotherapy since it would only increase my odds by three percent. Not much of an improvement but the starting number was good. Something between eight-seven and ninety percent depending on who I talked to, the oncologist or her assistant.

Since the surgeon got all the tumor, you'd think I'd be relieved but the surgeon expected a different grade because my tumor had broken through to the outer wall of my bowel. While he didn't dispute the oncolgist's decision he was definitely concerned by it. Concerned enough to remove more of my bowel when he did the surgery to reverse my colostomy.

I could read the surgeon's concern on his face so I asked the oncoligist's PA (physicians assistant) if this information made a difference. Her answer was both impatient and dismissive. There was nothing comforting about it. In fact, it only made me more frightened.

First off my surgeon is an old guy, an innovative leader in his field. I have reason to trust him. He has always been open, honest and caring. Even when it came to admitting errors by his colleague, the man told me the truth. His compassion and caring read clearly on his face when I was clinging to life and has continued to show as I heal.

Neither the oncologist or her PA struck me as particularly caring. They gave me little time and didn't follow through. I felt like a number, an unnecessary distraction in their day. No confidence there, only fear they could be wrong and little belief they will even notice if they are.

When you add to this the uncomfortable facts, my dad was first diagnosed with colon cancer in his mid to late thirties. His doctors thought they got all of his tumor but his cancer metastasized and found in his liver within a few years. Doctors gave him six months to live but it was two full years before he died. I can't help but think this could be me.

Then my father wad isolated from the family those last two years. They (my mother and her supporters) kept him stashed away in a VA hospital with the idea they were protecting us kids from seeing his decline and death.

For me it didn't feel like protection. It felt like torture. My dad lived for two whole years and we never got to see him. We never got the opportunity to learn about his disease or what to expect. What we got was our own imaginations running wild, lots of fear.....and I personally was overcome by loneliness and abandonment. Now, when I need it, I have no frame of reference for what to expect from this disease.

Considering the way my body reacted to the surgeries I am not considered a good candidate for future surgeries. If my cancer does return, my options will be limited. Translated that means if the oncologist is wrong and my surgeon right then I am pretty much scr*wed.

I have been a fighter all of my life and a positive thinker most of it. The problem is I don't even recognize myself when I look in the mirror.

The woman there is old and shriveled up. She has weird hair and weirder skin with lots of dry crusty spots and discolorations that were not there. She's skinny as a rail and weaker than a two ounce preemie. Her eyes won't focus and her stamina is non existent. Pain is her constant companion and she's worn out and alone.

She's also very vulnerable and people posing as friends have exploited her. Denial feels like her only friend.

The shock of going from the gutsy sixty something known for breeding, starting and training her own horses to the broken physical wreck in the mirror feels unbelievably foreign. I can't even begin to relate to that woman. We don't even wear the same clothes. But then that's because we don't have any clothes that will fit. The one's we do wear are chosen for comfort because most things rub across a very sensitive scar.

It seems unbelievable to me that I am still pretty much down. I wasn't to be up but the pain just knocks me right off my feet.

I know other survivors doing chemotherapy AND working while some days I can't even get my own meals or help by unloading the dishwasher. I just don't get it.

Sometimes I think the demoralization that comes with exploitation is part of my slow recovery. Others I think it's my denial keeping my feelings stuffed down so I'm not healing. Maybe it's my neglect to give myself the time and space I would give another. Whatever it is, I'm feeling like some how it's my fault that it's taking me so long to get back on my feet.

The truth is I don't know what to think except I want my life back . I want things around here to be normal and right now I can't figure that route out. Any suggestions?

Checking-in

You can thank my friend, Wendy, for this late night attempt at checking in. while I've hadd access for days, i did not have the computer skills to put it to use. i could torture you all wading through those issues but since my access time for any form of blogging is limited, I beter save that for another day if I'm going to get anything posted about my condition.

My surgery turned out to be a nghtmare for my surgeon and team with the extensive amount of ahesions found. Nothing routine or boring in a procedure that gets the heartrate of the senior surgeon up and his fear kicked into action. With desciptions of "drying bowels" and "frantically searching," the realization of what my poor body had survived caused flashbacks of recent TV episodes to provide me with a picture I would probably have been better without.

Regardles of gruesomeness of the content of such visions, I now understand what kind of recovery this would be. The extent of the adhenions suggests I am vulnerable to such occurences and maybe even to the degree I feel pain.
A very scary thought for me.

Currently things seem to be stabalizing. My pain is resisting management but I think we have it finally figured out. Maybe I should say they appear to be turning around.

Horses still give me something to move beyond the pain. Internet access has been a welcome way to visit with my herd and away from the confines of this place. It may not be real time and I may not have access to other blogs but it is an important contact nonetheless to fight the loneliness that comes with such a stay. Each comment a gift from a friend to get me though this mess.

Hug all your ponies and kiss your dogs and cats for me. I miss hearing of them all, as I miss my visits with you. Despite another hard road, things are on the mend. I may be a "tough old bird" but it's getting me through. I can't help but have visions of cartoons flashing as I walk the halls. Maybe someday I'll share that dark humor with you.

Thoughts on the C Word......

Cancer.............just the mention of the word strikes fear in hearts. I don't know anyone that doesn't visibly react at the word. Even the bravest of men can be brought to his knees in tears over such a diagnosis for himself or a loved one. And why not? Known as the most proflific serial killer of mankind, we have reason to be afraid.

Most of us probably remember from our earliest childhood hearing about cancer and its ravages. Even though we may not have had someone immediate to us fall victim, we heard enough to know it was an experience we did not want to see up close and personal. Cancer has most certainly earned its gruesome reputation.

It is the most dreaded of all diseases and maybe even one of the most baffling. With all its forms to its blantant disregard for all things human, it leaves us trying not to think about it, talk about it and we sure as hell don't want to hear anyone we care about has it.

I remember when they used to say one in ten of us would be affected by cancer. Then it was one if five, then four. I think the latest I heard was that one in three of us would get cancer at sometime in our lifetime. I remember thinking that meant if those statistics were correct, we hadn't seen our last of the dreaded C word.

Yet even with that kind of reaction, I must admit that I have not been diligent about taking the kinds of tests, seeing the kinds of doctors I should see to be on top of any contest I might find myself in with this disease. Of course, I should have been. With my family history I most certainly should have been.

My father died from colon cancer when I was twelve. I believe his first diagnosis was when I was six or seven. Then sometime around my nineth year, cancer was found in his liver and they gave him six months. He lived two and a half years.

I remember from that first diagnosis no talked to me about my dad's illness, not my friends, neighbors, teachers and most certainly not my mother or my father. Everything to do with his illness was hidden from us. Even the last two years of his life he spent very little time at home. Most of it he was in a VA hospital and that is where he died.

You know I used to save my allowance so I could ride the bus home from school instead of walking. The bus ride was horrible and took forever but it made the loop through the VA hospital grounds and I would ride that bus because it was the only way I could get anywhere near my father. I would search the windows hoping to catch some glimpse of him as the bus made its way across the campus.

I never did see him but I always talked to him. Inside my head I told him about my days at school and, of course, about how much I missed him. I didn't get to ride that bus nearly often enough.

Sometimes I wonder if we had been allowed to witness what happened to my father if that wouldn't have changed my avoidance of his disease as part of my medical history. All I know for sure is I have very few memories of actual time spent with my father. All I really remember is what he looked like and that most of the time he was alive he was nowhere near me.

I knew because colon cancer killed my father that I was at risk but to be honest, I didn't really believe it. I guess I had some trumped up reason in my head about why I thought he got it so I believed that genetics weren't a part of it. Whatever it was, I am 64 years old and have never had a colonoscopy.

I learned in the hospital I should have started having them much sooner than the usual 50 years of age. Because my father got the disease much earlier, the recommendation is ten years earlier than the initial diagnosis. That means I should have started those tests in my twenties.

Obviously I survived until now without the test. I do wonder if knowing the actual protocol assigned because of a disease course like my fathers might have affected my denial some but mostly I mention it because it's just not said enough. Ten years earliers than the initial diagnosis for relatives to begin testing makes a lot of difference than that 50 benchmark I was hearing.

In my defense I will say I did have a "good" reason for avoiding a colonoscopy. Not that any reason is really good but it was good enough for me to hide behind and I'm pretty sure there are others out there using the very same excuse as me.

Because I suffered extensive sexual abuse as a child, I had some tremedously strong triggers affecting me. Even though it was an important medical test, to me it read more like a total loss of control over a portion of my body that had seen horrendous violation. Giving up that control and allowing myself to be that vulnerable was a hard thing to manage.

I did get to that point. Actually had the test ordered by my primary care physician. Then the insurance company decided to play games and insisted on all kinds of things to verify the test was actually necessary. By the time it was finally approved, our insurance had run out and we couldn't afford to pay for the test with my husband out of work.

That was about the first of this year. We both turn sixty-five next February and will be eligible for Medicare so the test would have to wait until then. One year in my adult life without health insurance, what could happen, right?