Make your way up to the stars, it's there where you belong

So... in the last four years I've been diagnosed with cancer, had a couple of surgeries, went through chemo, more surgery, suffered nerve damage to my leg, more chemo, more surgery, almost died, more chemo, had a brief period of remission, more chemo, strange intense pain, more surgery, almost died again, and wound up crapping into a bag strapped to my belly. And there is more surgery and probably more chemo coming up. Somehow I'm supposed to maintain a positive outlook through all of this? Well let me tell you, it ain't easy!!

In order to help me through some of the tougher issues, I'm going to see a shrink next week. This will be my first time in therapy. I've come up with a list of things I might tell the doctor in order to keep this interesting. Let me know if you have any more ideas.

• I love my sister. No doc, I LOVE my sister
• I have this dream where I'm flying around on a huge cigar and the landscape looks like it was painted by Georgia O'Keefe
• I sometimes, loudly and abruptly, cluck like a chicken
• I wear diapers. Not that I need them, I just think they look cool
• Are you talking upside down?
• BWAAAAAK
• When I was a little boy my "Uncle" Charlie use to tell me "pants are for sissies"
• I have trouble remembering things, like the combination to the lock on my door at the Pentagon
• I have spirit, yes I do! I have spirit, how 'bout you!?
• My favorite color is couch.
• Seven!!!!!!
• I maintain I was NOT on the grassy knoll!

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.

This time when kindness falls like rain

February of 09. That was the last time I posted something. Guess it's time for an update, huh?

A lot, and I do mean a LOT, has happened since then. I'll try and hit all of the highlights without going into too much detail.

March: Still going through chemo. The drugs aren't all that bad though. There is still this issue of intense abdominal pain. Some of the doctors have theories, nobody is sure what it is.

April; Found out I was going to be laid off. Now it may seem incredibly cruel for a company to lay off someone in my condition, but I have to be honest here; they treated me pretty well, and I was the last in a very long list of people to get the axe. The company was bought out about a year ago and has undergone major restructuring. I'm going to get a decent bonus to hang around for a while and a nice severance package. Not to worry.

May-July; The pain is getting worse and more frequent. It seems to be hitting me almost on a weekly schedule. Chemo is still tolerable.

August-Present; Ohhhh, August. Here comes the storm of the century. The pain is most likely caused by blockages in my intestines. It may be from scar tissue, it may be from tumors, it may be from necrotic (dead) tissue. No matter what is causing the pain, something needs to be done. It has become unbearable. I wind up in the ER and after a CT scan, my surgeon locates the blockage. He is going to open me up and try to fix it.

My surgeon warns me that one of the possible outcomes of the surgery is that I may wind up with a colostomy. Most likely it will be temporary and he will try to avoid it at all costs. When the surgery is over, I am ostomy free!! Things are looking good.

But then....after a few days in the hospital recovering from the surgery, something goes horribly wrong. I begin to have difficulty breathing, a lot of difficulty. I'm knocked out and intubated. I wind up in Critical Care, on a vent. The doctors are not pleased with my circumstances. They even go as far as to suggest to my family that they say their goodbyes. They don't expect me to make it through the night. This is the second time in 4 years that I have stood upon the threshold of death's door. I've got quite a bit to write regarding my near death experiences but I'll save that for later. Obviously I made it through the night. After much attention from the Critical Care staff, and gallons of fluid, my body somehow recovers. Another surgery reveals that I had developed a fistula (hole) in my lower intestines and that (this is not for the squeemish) I had aspirated fecal matter. Do you get that? Understand? I breathed shit into my lungs! This surgery unfortunately, did leave me with an ostomy. As nothing can go completely smoothly, it was not a colostomy, as the surgeon had predicted, but a jejunostomy. For those who don't know, an ostomy is when a part of your intestines is cut and then poked out through the abdominal wall creating a stoma on the outside of your body. The normal function of the colon and rectum are taken over by this stoma, and you pass fecal matter out of your body through it. The problem with a jejunostomy is that the stoma is created from the juncture right after the stomach, so that there is little internal digestion taking place, creating a very loose, very active stream of matter. Also, the stoma, in my case, was pulled out of my body at a very problematic area. Because of my rapid and significant weight loss, my abdomen presented a difficult landscape for the surgeon. It has led to many problems with regards to the placement of the apparatus meant to contain my output. Do you get that? Understand? I now crap into a bag and have a lot of problems with leakage.

In the mean time I'm working on applying for Fed. Disability so that I can continue to feed myself. Though that is a cheap endeavor these days. You see, I don't eat much since the food that I do eat rapidly exits through a hole just east of my bellybutton. This leads to a couple of runs back to the ER for dehydration. To combat this issue, I'm fed intravenously for 12 hours a day. That's 12 HOURS every day! Just another reason to go on Disability.

Well, the Federal government isn't about to pay me as well as a multinational marketing company, so changes have to be made. The biggest is that I am forced to give up my apartment in Bayonne. This really hurts, as I had a great place at a fantastic price. I have moved, or more accurately am in the process of moving, to Toms River, NJ. My sister lives there with her husband and my new, totally wonderful, incredibly cute, strong reason for living, nephew, Joey! My father is also in the process of moving into a house here. I am staying with Chrissy for the moment but will be moving in with Dad very soon. Again, here is another post that will bring out some explosive prose, I am sure.

I guess that's about it for now. I should be all moved down here in a couple of weeks. I'm stuck with the IV every day, and the bag on my gut. The ostomy is supposed to be temporary, perhaps being reversed in the next couple of months. The doctors warn me though that even after the reversal I will continue to have digestion issues and will probably be on the IV feeding for several more months. Whoooopie!!

Oh....and there is still the cancer. While I'm recovering from this latest round of beatings, I'm not taking chemo. So is the cancer growing back? Who knows?

I'll be posting more soon. They will most likely be more of the "introspective, existential" variety.

Keep in touch!

Long time no see!!! How the hell are ya?

Yes, it's been quite some time since I've taken a moment to write. It has been difficult.

There was a time in my life when the biggest decision I had to make was which bar was I going to hang out at tonight. A time when my biggest concern was that my apartment was a mess. A time when the wost I would felt physically was the inevitable winter stomach virus I would have to power through for a few days. Those days seem so far ago, and almost impossible to return to.

After several months of some of the worse chemo I've been through in the last 4 years, last week I had a scan to determine the results of the treatment and find how the little buggers in my gut were faring.

Well....turns out, as I've typed too many times before, I still have cancer. According to my oncologist, based on opinions from two different radiologists, the tumors either grew slightly or did not change at all. My oncologist agrees with the latter. So much for the good news.

Sitting in his office, my mind kept turning over again and again "they're bigger. It's growing" and man was I pissed. I did nothing to suppress my anger as my doctor tried to reassure me that things were not all that bad. There are still plenty of options and there is good news here. The cancer hasn't spread. But still, in my brain, "they're bigger. It's growing".

After some days to reflect and calm down I somehow found my strength and usual optimistic attitude. I'm ok with with "They haven't changed at all" now. So what do we do? The current plan is to revisit some of the drugs that have worked before, but apply them in different dosages and in different combinations. Sounds like a plan.

For the last week or so I've been on a fairly violent roller coaster. I've still got this unbelievable pain in my abdominal area. A pain that my doctors, all of my doctors, have been unable to explain. I've been seeing a doctor for pain management, and he has me on a constant supply of meds via a transdermal patch, with pills for those times when the pain seems to get past the protection of the plastic glued to my arm. The pills have come in handy, as the pain does get unbearable from time to time. I am going to see my pain doctor next week, and I suspect he'll increase the amount of medicine in the patch.

That's it for now. Yeah, pretty clinical and straight forward. I can't even begin to examine my emotional state from the last couple of months. There have been many days where I couldn't face the reality of anything. I just lay on my father's couch, crying, wondering, throwing up. I've been angry, frustrated, sad, accepting, understanding, hopeless, blah blah blah. I'm going to try and get to some writing. Maybe in this blog, maybe just in journals. I'm going to discuss the situation with the musses and see if I can't find my solace, as I have so many times in my life, in scribbling out some poetry. I might even start talking to my friends again. We shall see.

I love you all, even though I may seem to be hermitting myself away.

Billy