Tuesday, April 17, 2012

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.

Sunday, April 1, 2012

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?