Not for the young or the faint of heart

Though my writing, and even my daily attitude may seem chipper, the truth is that most of the time I am a bit depressed. Sometimes more than others. Cancer can be a sad gig.

What gets me down the most is the mechanics of it. The daily reminders that my body has forsaken me, that disease holds no prejudice or grudges, nor has any sense of fairness.

I want to try and covey the enormity of the annoyances I have to run through on a day to day basis. But it won't be easy, and I warn; it won't be pretty.

The ostomy pokes out through the right (my right) side of my belly. Around the stoma is placed a "wafer" held on by a type of glue, a sticky substance resembling calking, and material not unlike large band-aids. The wafer has a 1 inch opening in the center through which the stoma protrudes. Around the opening is a lip onto which is fastened a bag. Securing that all down is a girdle like belt which is 4 inches wide and wraps around my whole body. During the day the bag fills. About once an hour, more if I've just eaten, I have to visit the little boys' room, empty the contents of the bag into a plastic urinal, empty the urinal in the toilet, and then thoroughly clean the urinal. Sometimes my waste is fluid, and sometimes it takes on the consistency of, well...shit. (told ya this wasn't pretty) In the evening, while I sleep, the bag is hooked up to a tube that runs to a drainage bag that lays on the floor. I have to sleep on my right side, lest the bag on my belly back up and explode. I also have to keep myself surrounded by towels (paper or otherwise) in case of a leak. Yeah, leak. In the morning I have to empty out the drainage bag and clean it using a combination of hot water, bleach, and some other chemicals. This process can take up to 30 minutes if my night's drainage is thick and chunky.

Most times the wafer holds tight for about a week. Every now and then it leaks. It may leak at night and I wake to find a lovely mess. It may leak during the day and soil the belt and my clothes. If there has been leakage the skin underneath the apparatus becomes highly irritated and feels like it's burning. Once or twice a week, leak or not, I have to change the appliance of the wafer. I have a nurse who takes care of the ostomy stuff. The nurse visits about once a week, more if I call with a leak emergency. This process takes about 30 minutes to an hour, and if the skin is irritated, is very VERY painful.

Enough about that. I also have to take medication. LOTS of medication. I have to take a handful of anywhere between 6 and 20 pills, 4 times a day. Luckily my sister doles out the pills into a week-long dispenser. Labels for each day and time. Lucky me.

For 12 hours every night I have to be fed by an IV. This process begins around 10pm every night. First I remove the 3 liter (yes, that is large) bag of saline and nutrients from the fridge, remove the seals and mix the fluids. Then using sterile syringe techniques, I have to draw up one syringe with additional nutrients from two separate bottles and add them to the 3 liter bag. Then there is another vitamin that has to be added in the same way. Next we unpack the tubing, replace the batteries in the pump, run the tubing through the pump, prime the tubing, clean the IV connections on my PIC line, hook up the IV, and let it run. Piece of cake.

The PIC line is a permanent IV placed into a large vein in my arm. Once a week a nurse comes to draw blood and change the dressing on the PIC. The last time I was in the hospital this PIC line got infected and almost killed me. Life is a bowl of cherries.

Most of my day is spent on the couch. I can't venture too far for fear of bursting my bag in public. Sure being covered in shit is funny when you're a drunk college student, but those days are long behind me.... for now. If I do need to go somewhere I have to pack a duffel bag filled with all the equipment I might need in order to change the ostomy stuff. Though with all the medical supplies, there is no room for me to take my dignity with me.


Every morning, well just after morning, I wake connected to two tubes, ready to disconnect and do it all over again. Yay me.