Tuesday, July 1, 2008

My BIG Pretense

Up until this moment, I have not been honest about my upcoming surgery. My surgeon is not going to simply remove the tumor. He is also going to remove 40% of my large intestine - the last 40%: descending colon, sigmoid colon & rectum - along with the sphincter muscle and as a result, I will have a permanent colostomy. If you are unfamiliar, a colostomy is

a surgical construction of an opening from the colon through the abdominal wall to the outside of the body for the purpose of excretion.

To put it bluntly, maybe you have heard the expression "Opinions are like assholes - everybody has one." That will no longer be true in my case. Mine will simply be gone and all that will remain will be some skin sewn together and it will be an exit no more. I will therefore have a removable bag or - to use the current term - a pouch attached to my abdomen - a catch-all if you will. Essentially, the pouch will do the job of my non-existent rectum and be conveniently detachable.

So, right now at this moment, I have to tell you, I feel like I'm frozen. I have just let the cat out of the bag and now I have to deal with myself - with my emotions and judgments. Why? Because I have a HUGE problem with having a colostomy and an even HUGER problem with the idea of you knowing about it. I am clear that I have been uncomfortable about people knowing about the colostomy. And why? Well, if you think about it, I don't really want to know how you do what you do in the bathroom. And I'm sure the feeling is mutual. It's a topic we don't really discuss - at least I don't! And by sharing this with you, I'm now discussing it.

However, there was something else there for me. Something else even bigger that was keeping me from being honest or at least willing to share this aspect of my experience. I have known about this since March and couldn't bare the thought of making it public. I have been so confronted at the thought of sharing this information on the blog, that Sunday night (just two nights ago) I even went so far as to create a second blog - invitation only - for those folks who knew I was to have a colostomy. I was going to do my non-colostomy posts on this blog and then the colostomy posts on the other blog. So, I posted my first entry and asked those who were invited to keep quiet about it. Via Blogger, I had sent out my first batch of invitations and I was in the process of determining who else was to be added to the list.

Fortunately, my friend Jim Steigerwald - a dear friend of nearly 20 years - sent me an email after receiving his invitation from me to be a member of my private blog. Jim has always been a great friend - right from the day I met him. He's actually an amazing guy in general. Here's a piece of the response he wrote to me regarding my decision to keep the colostomy a secret:

I’m of the opinion that as soon as you move this to the forefront as part of your treatment, you’ll also move headlong towards a comfort level which you seem to be lacking. I only say this due to your desire to share the deepest inner workings of “Bert in recovery” on the blog, and are currently leaving out what I consider one of the biggest cogs to come along. This is a big part which is being brushed over. Though you’ve expressed jubilation about the surgery itself, the coming to terms with what the surgery is actually going to do is missing.

What I love about Jim is that he maintains a high level of integrity in his relationships such that he's only willing to speak the truth. Jim invited me to look at what I was unwilling to see and in my book that is a true friend and for that I am grateful to you Jim.

After reading Jim's email, it hit me how uncharacteristic of me it was to keep it a secret. Daniela had encouraged me to look at what had me choose to keep it a secret as soon as she learned of my decision as well. But I couldn't see it. And I was unwilling to make myself vulnerable to so many people when I hadn't a clue as to what this fear was all about.

Well, upon reading Jim's email it hit me. I have always felt pity for those people who have colostomies. In my mind, pity holds a judgment. Compassion would have me open my heart to a person with a colostomy or anything else for that matter. Pity had me look down upon them and feel sorry for them. And for me to be of those who are pitied and looked down upon disgusted me. And with that I suddenly realized how presumptuous and ignorant it was of me to have made up this story about how life was for others - that their life was one that deserved pity. I even took on the roll of being embarrassed for you if you had a colostomy. I feel no pride in being this way. However, I am incredibly grateful to have distinguished what it was that had stopped me dead in my tracks from being honest about my experience.

I also want to say I am clear that once I have fully come to terms with having a colostomy, and I am absolutely certain I will, it will just be a normal part of my life. And should someone go the path I went and pity me, that will be for them to deal with. However, I have not come to terms with having a colostomy. On Sunday, I met with a woman from the area who has an ileostomy - essentially the same as a colostomy except that with an ileostomy you have no large intestine at all. She was great. We talked about everything - the good, the bad and the ugly. She even left me a pouch with the adhesive attachment so I could start to determine if I want it above my belt line or below. Apparently, I will be given some choice in the matter. Well, I haven't even touched the thing since she left. I will, but right now whenever I ask myself, "Is today the day?" I feel the resentment stirring. Maybe tomorrow. Not today.

And since I have the floor, let me say something else. Even the word itself sounds unpleasant - col-OST-omy. Why can't it be a softer sounding word, like stoma? The stoma is the bit of intestine that will be the exit from my abdomen. It may look kinda ugly - all bright red and poking out, but its a nice soft sounding word - it works for me. Stoma. But colostomy? C'mon. To say it out loud, it almost sounds like you're clearing mucous from your throat. Col-AUGHST-omy. Yuck. Who came up with this word? Certainly not anyone who had one!!!

So what's the reason for the colostomy? Even if the radiation and chemotherapy removed any sign of the tumor all together - if it was 100% gone - it is standard procedure when possible, to remove any organ or tissue that he cancer has entered. If the rectum and sphincter were not removed, there would still be a strong possibility of the cancer returning to that area. And if it did return, statistics show that because it has grown through the rectal tissue and entered the sphincter muscle, should it metastasize, it would very likely metastasize to my pelvis (as opposed to my lungs and liver). And my surgeon, Dr. Cagir, made it very clear to me that unlike lung or liver metastasis, pelvic metastasis is accompanied by an excruciating level of pain that no living - or should I say dying - person would want experience. He saw it once and told me the maximum dose of morphine did not relieve the pain. So as you can imagine, I am all for having the surgery. I will do whatever it takes to stay healthy. So sign me up. I plan on sticking around.


  1. Bert,

    I am awed by your level of honesty in this blog. I know that you have done everything you could, in terms of alternative therapies, to avoid this outcome. Truthfully, the question of the extent of your surgery has been on my mind lately, but I haven't wanted to bring it up with your mother or to ask you about it here. I guess I assumed that you would share the details when and if you were ready.

    I can not imagine living with a colostomy bag, but if it were to mean the difference between living longer or risking an early death from metastatic cancer, I would take it. Which is, from your description, the reason that you are taking it as well. Once we have had cancer and endured chemotherapy, I think we expand our limits in terms of what we are willing to tolerate in exchange for living longer.

    And I think the same is true for those who love us. I know now that MaryGail will care for me through a variety of unpleasant experiences, in exchange for keeping me in her life longer, and I'm sure the same is true for Daniela.

    Thank you for sharing this uncomfortable truth with us. I hope that in the sharing of it, you find some ability to integrate it more fully into your identity in preparation for the surgery.

    I am thinking about you today, hoping your exam goes well, and hoping that the next couple of days aren't as bad as they were the last time.

    You and Daniela are continually in my thoughts.

    Maria Brown

  2. Ouch. I guess I dont make the A list. That's OK Bert, I still love you.

    Now I have to go sit somewhere private and cry about my exclusion from the Secret Blog. I feel like freaking Rufus.

  3. Bert,

    Gee, you have to take a lot of criticism for something that you could have just abandoned quietly as an almost mistake, but freely admitted and corrected.

    Once again, you miraculously made the right decision for your life.

    Take care.

  4. WOW - you did all of that worrying about a Colostomy? You can't see, after a year, that those folks on this blog that read your entries do it because they want to cheer you on, raise you up to have the strength to carry on? - you're a smarter man than that. To be blunt - don't you think your family and friends would rather see you with a "bag" than not at all? I know I'd take back any one of my relatives (including my brother) with a “bag” worn on his arm if it meant I could see him again. And don’t worry – we’re not going to pity you – but we might make fun of you for thinking people are all that shallow.

    You’re probably like “who in the heck does this guy think he is” – and that’s cool – I just want you to know that you’ve been an inspiration to a lot of people and for you to worry about shitting in a bag is just crazy. Don’t get me wrong guy – I wouldn’t want to have it done but the alternative is much worse.

    Take this in the spirit in which it was written. Now go tomorrow and take that ultra-sound probe like a man – LOL! Screw the SOX we’re rooting for you.


  5. Bert,
    Something about your description of the mechanics of the thing reminded me of the Apollo 13 mission and how they had to make an adapter to filter the air in the LM. Same principle - you do what you have to to stay alive. It's amazing what a person can adapt to. If anyone can adapt I'm sure you can. Writing and sharing puts you miles ahead of where you would have been without it. Anyway, thanks for sharing - just gaining a little knowledge about it increases level of comfort about the subject in general, at least for me, and I would bet it does for most others as well.