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?


  1. I can share my observations, and perhaps a few suggestions, because I admire you and I hope that I can help or inspire you in some small way.

    Have you looked into physical therapy? I don't know what your pain and energy levels allow you to do, but that could be helpful for you. Even the smallest, silliest-seeming exercises can be extremely beneficial. This can be as simple as picking up your leg to a comfortable height, then lowering it, and repeating five or ten times. Bear in mind that I am not a doctor or medical professional. I am, however, a person who has sustained a variety of injuries over the course of my life, and many of those have required some sort of physical therapy to restore function. If you are able to secure the services of a physical therapist, they will probably push you. You can tell them if it's too much, but they're pretty good at gauging how much exercise you can tolerate. You mention that some people go through chemo and work at the same time, but your situation is different. You were bedridden, which probably caused a great deal of muscle atrophy. That may be a major source of your weakness.

    Have you contacted any support groups? Many of them have online discussion groups and resources. Maybe they can even suggest some pain management or recovery techniques. One group is called the Cancer Support Community, and they have an office in your home state. If anything, they understand what you're experiencing, and they can help you to feel less alone.

    I offer this idea; as tempting as it may be to blame yourself, resist doing that as much as you can. There are many regrettable things in this world, and it is a waste of your precious energy to blame yourself. Philippians 4:8 says: "Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things." Yes, you are down, but I don't believe that you're out. Try to think of good things. Think of your horses, the improvement thus far, your dogs, your loved ones, and anything that crowds out the negative. Sure, there are hard days and hard times. Try to be gentle to yourself. This is a lesson that I'm still trying to conceptualize for myself. It's a good thing to strive for.

    I don't know how many of these suggestions you have tried, or what is feasible for you. I just want you to know that I care and I hope you feel better. Sincerest wishes for your continued recovery.

    1. Snipe, thanks for the input. I have tried physical therapy but I seem to be on some kind of waiting list since December. Next trip to the doc, I'm going to get a referral to some place else that will hopefully take my insurance.

      I don't think I'm blaming myself. It's more like just wanting to be sure my pace is not being dictated by fear. I feel like I have nothing for comparison so it's hard to judge. I want to do more but seem to get knocked backwards when I do. Mostly that's caused by pain and then weakness from muscle atrophy. I'm sure my age affects that and I know my pain does. Trying to find a balance so I am getting stronger without the backwards stuff is what I'd like to see but as I said no frame of reference makes it hard. My body sure isn't telling me it's too much at the time. It seems to be an afterwards thing.

      I have figured out stress is playing a huge role in my abilities. My solution to help with that only turned into much more stress. Being exploited twice since this all began has been a huge stressor. Those stories are coming and will explain a lot, I think and be healing too. Avoiding the elephant in the room is always a stress thing to do. I will be glad when these two are out in the open where they belong.

      I also think I'm going to go back and finish telling the story of my first hospitalization and on from there. There really are so so many things that happened that have influenced this whole thing. It's hard to understand without knowing the details. Hopefully sharing them will help others avoid the pitfalls that got me.

      I had forgotten about support groups. I will see what I can find there. I am not really in full swing back at the computer but getting back at all and connecting with my friends really helps. More than anyone can even imagine. The biggest obstacle has been the hours I spend alone because Dave and Lindsay are caring for my horses and then so tired when they come in, they're napping. The second trip to the hospital had many many hours of alone time too so I'm particularly vulnerable to that.

      I am grateful for those who have called, and made comments on my blog. Those connections are invaluable to me.

      I'm hoping to do more posting here and the other blogs as well because that helps me feel like I'm participating in my life instead of sitting on the sidelines. We'll have to see if my body really lets me do that.

      Thanks again for your comment. It's a difficult subject and your imput was helpful.


  2. This was too long, so I am posting my "novel"of a comment in two parts... sorry!

    Part 1:

    I don't know if this is any help to you, but here I go nonetheless. I have Rheumatoid Arthritis. It's in semi-remission right now, so it's not that bad, but when it does flare... well, the one mantra that gets me through the bad days is:

    I am not my body.

    I try to keep things in perspective. My body is just... a vehicle. I kind of think of it like a car--- it's here to cart me around, from place to place, but it's not who I am. You are not your body, either. So the cancer that has thrown such a wrench in your life... well, that's not you, either. It's just... I dunno. A flat tire on your vehicle. It makes you late, it makes the car stop running as well... but you are still you. The cancer doesn't define you... it's interrupting the day-to-day functions of your "vehicle", and it's turned that life upside down... but you aren't broken. It's just your body. Does that makes sense, or help at all?

    Sometimes the brokenness of my body is helpful - it helps remind me that I have a soul, and to not get too caught up in trying to "win" at living in this world. Remembering that this body, this broken bit of flesh that carries the "real me" around is only temporary...well, it helps.

    Of course, that doesn't mean it's easy. There's something about pain - never-ending, non-stop pain that has a way of tearing and wearing down at you, even if it's light. If you could just know when the pain was going to end, or just how long it was going to last... or if you could just get FIVE MINUTES in a healthy body for a breather.... anyways, I bet this is probably more of an emotional burden than you might think. There are support groups and techniques to help with long-term pain... I highly recommend them.

    Also, listen to Snipe. Her advice is brilliant. At the worst of my last flare up it only lasted 3 months... three months. Right before it went away I tried to go swimming... and I panicked, because I was unable to swim - my leg muscles had atrophied that badly. Even after it went down and I started exercising more frequently, it took almost 8 or 9 months before the muscles came back 100%. How long were you down? I imagine it's more than 3 months! Snipe has a great point on the atrophied muscles.

    1. You bring up a good point. It is my body that is failing me and I was down a lot longer than 3 months. It was 3 months between my second surgery and my third. The cumulative effect of 3 surgeries on my body not even taking into account my body's severe reactions to them is a huge consideration. Then the amount of time I was actually down definitely contribute to the slowness of my recovery.

      But even the surgeon has been confusing on this. On one hand telling me his determination for when I "can" go back to my everyday life because that is based on the norm or typical scenario when there was nothing typical about my case. Then on the other hand he said it would at least be a full year before I felt normal again so I find myself fluctuating between his two statements wondering what really fits. I guess it comes down to there are no easy answers.

      I'm thinking it really is a good idea to go back and finish my posts about my experience. I think the writing will be good for me. Remembering the complications will help me see why it is taking so long and I think the perspective of those who comment will reenforce that I have been strong through this and not the weak that my body feels. It has been hard for me to see that difference.

  3. Part 2:

    For those of us who are fighters, or who have prided ourselves on our indpendence (and there seems to be a higher percentage of that kind of woman in the horseworld.. I wonder why?), having your body suddenly give out on you, and having to lean on others... well, it's hard to keep a sense of identity. When my arthritis was really bad two years back and I walked into Rite Aid and hobbled out with my very first cane, I thought... is this who I am? Some weak, barely-able to crippled woman? I couldn't help feeling terrified by my weakness, as if there were still wolves out there in the world, and they would spot me and take me down... I just kept repeating to myself:

    I am not my body.

    So, Mikael, what you're going through really sucks. I'm not going to lie. And maybe I don't have any words to make it less uncomfortable, or make the pain any less, but I can assure you this: YOU are not your body. That old woman who is looking back at you from the mirror? That's still you... it just so happens that your vehicle has been through a lot lately, and it has a lot of dings and scratches. And if your brain is foggy from pain or surgery fog, or meds, or whatever.... that doesn't mean you are foggy. That just means that your body is having difficulty making all the little neurons fire correctly, like a problem with misfiring pistons in a car.... but that doesn't mean you are foggy, because you are not your body.

    And if it's taking you longer to heal than most people, that doesn't mean you are weak, or that you're not trying hard enough... it just means that your silly "vehicle" is misbehaving, and while that's frustrating, it doesn't change the fact that the REAL you is strong and courageous. Because your body is just a vehicle to get that strong, courageous soul from point A to point B until that incredible moment when Just keep chanting it to yourself. :)

    PS: You are not alone. Not by any means.

    Oooh! I know giving you more reading with your eyes isn't the best, but have you read the spoon theory? Well, I imagine cancer is like auto immune disorders... you have a limited number of spoons, and don't feel guilty about that. Here, read this, and maybe it will make more sense:

    You're awesome, Mikael. Hope you're having a good day today. I think of you a lot, even if I don't write you very often.

    1. Thank you, your input and snipe's has been very helpful. I have been seeing myself as weak and vulnerable and it's a pretty scary place to be. That has been fueled by the exploitation that has happened. The combination has been tough but I will get it in perspective and get free of it. The one thing I am certain of is I am not a quitter. Regardless of what comes my way, I will fight to keep living my life on my terms chasing my dreams.

  4. ARRRGH. I have a feeling blogger ate the first half of my comment without giving it to you... if it did, can you email me and I will resend it? I worked kinda hard on that and I would really like you to hear it. HOpefully it comes through.

  5. Becky is right about pain. While mine was a different type, I can relate somewhat. In my foolish youth, I sustained a fractured collarbone in self-defense class. It was a complete fracture with separation and deformity, so the bones flailed instead of knitting properly. I had very limited energy and the pain wore me down. I finally had surgery to correct the issue, but you can tell from the photographs at the time that I was not doing well. Pain can definitely sap your vitality, that's for sure.