Letting Go...Ad Nauseum

Lately I have found myself imagining what life will be like once I no longer have an ostomy. Then I remind myself that based on current medical science, there will be no day that I no longer have an ostomy. I'm amazed that I still find lurking in the back of my mind, thoughts about this thing being temporary.

It has crossed my mind that I may still view it as temporary because I still have some things to learn about, i.e., irrigation, which I will discuss with Dr. Cagir and an Ostomy Nurse on December 2nd. I have a feeling that irrigation may not provide me with the option of simply wearing a "bandage" over the opening for the remainder, which is why people irrigate (from what I read). However, I am still very much interested in the possibility of irrigation in hopes that it will at least, well...how do I spare you the details...reduce the amount of maintenance required on any given day. I can't imagine how it wouldn't provide me such a convenience and I'm going to hold out on any test runs until after my meeting on December 2nd.

I guess what's there for me right now is that I am not "complete" with the whole thing. I have yet to let go of how life "used to be." I know I will. Be disappointed about what can't be changed gets pretty old and pretty boring pretty fast. I'm not really interested in that approach to life. And right now, I am definitely still hanging on trying to figure out who to be mad at. Kind of silly and quite real at the moment.

Finding My Way Through

As far as colostomy care goes, I feel confident. It ain't exactly rocket science. The "getting used to it" is about 99% mental. I have my ups & downs with it. I also realize my only exposure to colostomies in the past was with someone who didn't control for gas and would occasionally "cloud the room" quite heavily and with no warning. One of my big fears was that I would have no control and I would do the same. Well now I know, I need not have that concern because it's no different than before I had the surgery. If you want to control for, it's not a problem. If you don't want to, I guess you could clear a room in no time. Fortunately for you, I prefer to former.

I have been keeping up on my walking and as a result, I feel well. And the pain near my suture seems to be decreasing a bit and that is good. I was a bit surprised by my need to be sedated for the draining. I generally have a high tolerance for pain. But as I look back on the last 16 months, I realize I have been through a great deal of pain - consistent - never ending - chronic pain - and it has definitely knocked me down a bit. I imagine it may take a while to get back to where I was. And getting there will be nice.

Getting back to my old self again will also be quite nice. There's a vulnerability that has shown up for me following the surgery. Part of it is simply because I had abdominal surgery and could get a hernia if I do anything to strenuous. No thank you. The other part is mental and I have learned from talking to other folks who had major surgery that there is often an adjustment period that follows. For me its a degree to which I don't feel 100% safe in the world. It's all mental, so essentially it's not real. But then again, everything is mental when it comes down to it, so it is in essence it's real until I find my way through it.

I have to say I am quite surprised that I was not informed of the adjustment period since it's pretty powerful. As I look back, I can say I was told that there would be just that - an "adjustment period." But I prefer direct as opposed to vague. You know? Give it to me straight. Tell me I may question myself or feel vulnerable in the world. Because believe it or not, going to the supermarket was a big deal for me the first time I went (just the other day). I walked in there thinking to myself, "I was just cut open - front & back - I better be careful." I can't imagine what I'd feel if someone bumped into me. Already once I squatted and hit my rear suture on the inside door handle of the car and damn near saw stars or went blind for a second or something - I'm not quite sure. But what matters most is the time it takes to adjust. It's powerful and must be respected or I will find myself under more stress than I need. And, I feel good being aware of the adjustment period. It allows me to maintain some objectivity as I find my way through.

Another CT Scan For Thursday

I am doing well as far as how the antibiotic impacts my stomach. Now I only take the stuff on top of a big meal. And I've got back up options shared from others as well if my stomach is still irritated.

The rest of my body feels pretty good. I go on about two walks a day. This morning I was feeling pretty depressed - I don't want a colostomy and in fact don't want anything to do with a colostomy. So, from sitting in my recliner depressed, I got up off my butt and went for an hour long walk. Not only did it feel great as far as my healing body goes, but it just about vanished any feelings of depression. Exercise is a beautiful thing. Plus I saw two neighbors I really like and got to tell them the great news. I still can't tell people I'm cancer-free without crying.

Sitting is still a little painful, so my Nurse Practitioner has scheduled another CT Scan for Thursday. And of course, if the infection is worse, they will re-admit me and insert a drainage catheter as well as prescribe me an IV antibiotic. I'll let you know on Thursday. Believe it or not, I'm shootin' for not being readmitted.

A Bit if Anger

Lately, I found a bit of anger moving through me "when I wasn't looking." It showed up a little indirectly - by way of my complaining about this person or that person or maybe every person I could think of. Oh and no. If you're wondering, it wasn't you. It was everybody else. And I didn't even realize I was being so negative until Daniela spoke up. It was just flowing through me without much notice by me.

What really got me square in the face was yesterday afternoon. I felt inclined to turn off the ball game for a little while and I took a moment to pray. As I was giving thanks to God for all I have been given, the thought went through my mind, "I have no faith in you. All my faith and I have a colostomy to show for it." Well trust me, it was no sooner that I thought it than I was deeply humbled by my own arrogance. After ALL I have been blessed with - a beautiful family, endless support from my community and then to be declared CANCER-FREE, it hardly seems sane to have lost faith. Sure glad I wasn't put to the test like Job. I barely made it this far.

So anyway, no. I do not want a colostomy. And trust me. I was humbled to tears that my faith had wavered so deeply after being so blessed. And, I am grateful that I took the time to pray at that moment, so I could see myself and where I am in this process. I also want to acknowledge it is not my intention to boast. I only want to honestly share what I experience because it was so very powerful.

And for Daniela, it has not been easy to hear all my complaining lately. ONE, because I haven't even been complaining about anything anyone has done. As I look back, I've essentially just been complaining about different people's various faults. Heck, if I want to complain about that, I've got fuel for a lifetime of complaints. I can add myself to the list for that matter. And TWO, she can see quite clearly that something is going on for me, yet she doesn't need to hear so much negativity. And that has been difficult for me as well. What a cranky old bum - Shut up!!!

Don't get me wrong - I wasn't going on and on all day long. But it was enough that we both noticed it. And I can see I've been mad about a combination of things - all that we have been through emotionally, financially, physically, spiritually. There has been immense beauty in this experience and clearly not without a cost.

I'll find my way to peace with this colostomy - you can be certain about that. But right now, I'm pissed that I have to deal with the thing. And I didn't really realize it right out of the gates because there was no ONE to be mad at - no one to blame. Fortunately, at the moment, my experience of the colostomy care feels more like the times I have had a cast on a broken limb and had to manage it. It feels temporary. yet it's so unbelievably foreign and odd and absurd that I truly can barely get my head around the permanence of it. But obviously a part of me is very aware of the permanence of it all. And clearly not pleased.

So, I have been reflecting upon that a whole lot lately. I am deeply grateful for the privilege to have life and indeed a cancer-free life at that. Taking a minute to be with that, my gratitude is truly greater than I can express. And it's odd to be so grateful for my life and at the same time, angry about the colostomy. Not an uncommon experience in life - gratitude and disappointment at the same time. But it's hard to compare similar experiences from the past to the last 16-months of my life.

I Want One!!!

Here's a link to a recent segment from John Stewart's Daily Show. Finally Castro and I have something in common. And to think of all the years I have been waiting to say that...???

Today's Hospital Visit Had Some Great News!

I had a CT scan this morning and it was relatively uneventful other than my feeling quite spacey from the Barium I had to drink last night and then two more times this morning. Fortunately, the folks doing my CT scan were kind enough to leave the IV (used to inject iodine into my blood stream during the CT scan) in my vein so I could then walk over to the vampires and let them do the blood draw required of me prior to my meeting with Dr. Allerton (my chemotherapy doctor).

I'm sure Daniela & I will receive the results of my CT scan tomorrow when we meet with Dr. Cagir. As far as my meeting with Dr. A, he said my counts were good and my protein counts were slightly low but nothing to be concerned about as long as I continue eating plenty of protein, as my body is still healing from the chemotherapy. Dr. A reviewed my ultrasound results and said there was no longer any cancer in the lymph node closest to my rectum. That was great news!

Tomorrow Daniela & I will meet with Dr. Cagir to discuss my upcoming surgery. We'll also meet with the Nurse Practitioner who oversees new colostomy patients. I did adhere the colostomy pouch to my abdomen and I also put a handful of small polished stones in the pouch to see what it feels like to have some weight in it. I am real clear at this point that there is no way in hell I'm putting oatmeal or applesauce in the pouch. Substituting food for feces? Sure no problem. Just let me go puke a couple seventeen times first! It is amazing what some people are capable of...and that some people ain't me.

And on that note, the colostomy isn't really phasing me right now. My concern is strictly about the final results of the surgery.

Time to Get Over Myself

During my final hours of sleep today, I drempt I was in a post-production type factory or warehouse. I'm not quite sure how I got in there, but do remember that I had called Daniela and told her I would be home in 15 minutes. My motorcycle was outside waiting for me. The design of the building was quite irregular. Clearly as the business had grown, there had been numerous additions built onto the original building, because no hallway or walkway went in a straight line.

Eventually, I realized there was no order to the buildings and I clearly needed to ask for directions. However, I did not ask where the exit was, but instead I asked what how to get to a specific road - Route 5 . That was a bit peculiar since I had a band called Route 5 for a number of years. So I asked the first person I saw how to get to Route 5. She didn't know so I asked the next person I saw. He didn't know either and then I realized they both seemed a bit confused by my question. This continued as I walked through various buildings, halls, staircases, fenced in lots, etc. - it was endless. At one point a man and two women joined me in my search for a way out, but I eventually lost them and was back to the search on my own. This search was getting long. I had been trying to find my way out from 5:15 PM to 9:45 PM - I was certain Daniela was concerned about my whereabouts. Once I finally did make my way out, I caught a ride from a guy who could only drop me off a few miles from Auburn (my destination and in reality, my home town). Unfortunately, he wasn't quite sure where we were and I didn't recognize anything I saw.

When I finally woke up I was happy to realize I had only been dreaming. However, the next thought on my mind was the colostomy pouch and how I hadn't tried it on yet or more specifically, how I hadn't attempted to adhere it to various areas on my abdomen, as had been recommended, to find where would be most comfortable - either above my waste line or below. My next thought was, "Okay. It's time to "buck up" and start getting used to the thing." And then it hit me - my dream was the path I had been on thus far - infinite and without any logical direction - the exact same path I have been on in regards to the upcoming colostomy. I have done nothing to take the necessary steps to get myself more familiar with the pouch and the process of managing a colostomy. And all the while, the clock is ticking - July 16th will come whether I am ready for it or not. It's like I'm holding my breath as a threat if July 16th doesn't back off. And if I hold my breath long enough, I will wake up with the bag attached and not prepared in the slightest.

As I look at my dream, it seemed like one possible version of hell. I was lost with no direction - nothing familiar - and no one available to assist me in this endless version of chaos. And that again, is exactly where I am in regards to the colostomy pouch - no one has any directions for me because there is nothing else to tell me. Until I take the next step and watch the DVD I was given, read the pamphlet it came with and adhere the pouch to various spots on my abdomen, the entire process will be circling endlessly in a holding pattern.

So, I am going to put in the DVD right now and after breakfast I will adhere the stupid pouch to my abdomen and determine what will be the ideal location :-). And of course there has to be a gross requirement while getting comfortable with the pouch. And by "gross" I do not mean large or the total before deduction. I mean gross - disgusting - and yet another hump I have to get over. I was instructed to put applesauce or oatmeal in the bag to get an idea of how it will feel. Applesauce or oatmeal??? It has to be food??? Come on! I have to use food to mock the contents that will be excreted into my lovely little colostomy pouch? As I typed those last two sentences, I got the distinct impression they were my version of some last attempt to justify not taking this on today - some mental kicking and screaming or even worse, my pre-colostomy pouting.

And too bad, Bert. You're doin' it. So get over yourself...and break out the applesauce!!!

The Beginning

How it all came about:

• Thursday March 15, 2007 - I requested a referral to see a specialist. Why? I was passing too much red blood for too long (and getting no results with my, now former, primary care physician).
• Wednesday March 21, 2007 - Examination by general surgeon - unknown mass found.
• Friday March 23, 2007 - Colonoscopy - ulcerous tumor found
• Tuesday March 27, 2007 - Diagnosed with Stage II Rectal Cancer

Doctor recommend 6-weeks chemotherapy & radiation followed by resection surgery
[resection surgery: removal of descending colon, sigmoid colon & rectum; rebuilding of new rectum with transverse colon and reconnected to anus; temporary ostomy bag for 8 months while resection surgery heals]
followed by 3 to 6 more months of chemotherapy & radiation

• Wednesday March 28, 2007 - I cried my stinking eyes out, screamed at the ceiling and then cried a whole lot more.
  

• Friday April 13, 2007 - 2nd Opinion at Sloan-Kettering

Doctor recommended (same regiment of chemotherapy & radiation) along with permanent removal of descending colon, sigmoid colon, rectum & anus with permanent colostomy.