First off, I would like to apologize. I wanted to contact each of you individually with this news. It seems so impersonal to hear it from a blog. I tried to get as many as you as I could but it got exhausting. On top of that, the radiation simply wipes me out. It's the worst side effect. I'm sure you all understand.
The news is this; the cancer has spread. They found signs in my liver and in my lungs. All involved believe it is the original colon cancer just going for a road trip, not new cancer springing up. To be honest, even though my oncologist explained that to me a million times, I'm still not sure if that is good or bad. Marie, please don't try and explain it to me, just let me wallow for a while.
As we were discovering the existence of this other cancer, my pain management doctor was tying to determine the cause of an excruciating pain I've been having for the last couple of months now. He and my oncologist felt that a small node on my hip may be the culprit. They both believed that by shrinking the tumor they could eradicate the pain. I agreed to go along with it, the pain I was experiencing was excruciating. It was mostly in my belly but it would also spread to my lower back. It would keep me up at night, wake me from a sound sleep, prevent me from standing straight. We had tried so many other remedies and it seemed to me we were getting to the end of the rope.
Next week, Tuesday the 16th, I will start chemo. Chemo will be once a week, radiation will be once a week.
and oh.....apparently I quit smoking. keep your fingers crossed for that one.
Love you all!
Billy
Friday, June 12, 2009
Sunday, April 26, 2009
Sing a song of six pence
Just a quick update. I have good days and bad days. I think right now they even each other out. My biggest problems at the moment are nausea and pain. Next Thursday I will meet with my pain management doctor and discuss some options. I will also be meeting with my oncologist. Chances are I will start chemo. yipppeeeee! ok, more later.
Thursday, March 19, 2009
lemme esplain. no. will take too long. lemme sum up..
I will post my blog at billyscolon.blogspot.com. It will automatically be coppied to my "Notes" section on Facebook. On Facebook it will be abreviated though. To read the entire thing you will have to click the link which says "View Original Post", and it will bring you to the entire post.
So much has happened since the last time I've posted on this blog. There is a lot to cover. For now I'm just going to give a clear summary so that we can all get caught up.
At the begining of March I came into Hackensack Hospital with severe abdominal pain and vommitting. The pain and vommitting had been going on for a while. I had been in and out of the hospital 3 times in the months previous. Each time I was just givin fluid, monitored for a while and then sent home. This time the doctors wanted to spend more effort figuring out what was goiong on. After a few scans and x-rays there was nothing obvious. But then my surgeon revisited a previous cat scan and noticed some groth near my hip. He suspected it might either be an infection or may be more cancer. Plus there were some enlarged lymph nodes which were most likely cancer. He ordered a bone biopsy and it came back as positive for cancer. It's not bone cancer, simply colon cancer left over, in tissue formed around the hip bone. We decicded to go with some surgery. The best case scenario would be that the cancer was not involved with any organ or intestine and the surgeon would be able to remove it. Also he would be able to reverse the ostomy I had done last September. The worst case scenario would be that the tumors are too involoved with tissue and removal would be extremely risky to remove.
And which case would it be? hmmmmm? let's see??? Billy............cancer.....hmmmmmm??? Yup, it was the latter. The tumors are too close to the intestines and the blood supply for them. He decided to just clean up some scar tissue an close me back up.
So now I'm in the hospital recovering. Just resting up and hoping I'll be able to hold down food. Once that goal is met I'll be heading home and will begin a new chemo treatment very soon.
Physically, that is where I'm at. Emotionally and phychologically are something completely different. Stand by for that roller coaster...
So much has happened since the last time I've posted on this blog. There is a lot to cover. For now I'm just going to give a clear summary so that we can all get caught up.
At the begining of March I came into Hackensack Hospital with severe abdominal pain and vommitting. The pain and vommitting had been going on for a while. I had been in and out of the hospital 3 times in the months previous. Each time I was just givin fluid, monitored for a while and then sent home. This time the doctors wanted to spend more effort figuring out what was goiong on. After a few scans and x-rays there was nothing obvious. But then my surgeon revisited a previous cat scan and noticed some groth near my hip. He suspected it might either be an infection or may be more cancer. Plus there were some enlarged lymph nodes which were most likely cancer. He ordered a bone biopsy and it came back as positive for cancer. It's not bone cancer, simply colon cancer left over, in tissue formed around the hip bone. We decicded to go with some surgery. The best case scenario would be that the cancer was not involved with any organ or intestine and the surgeon would be able to remove it. Also he would be able to reverse the ostomy I had done last September. The worst case scenario would be that the tumors are too involoved with tissue and removal would be extremely risky to remove.
And which case would it be? hmmmmm? let's see??? Billy............cancer.....hmmmmmm??? Yup, it was the latter. The tumors are too close to the intestines and the blood supply for them. He decided to just clean up some scar tissue an close me back up.
So now I'm in the hospital recovering. Just resting up and hoping I'll be able to hold down food. Once that goal is met I'll be heading home and will begin a new chemo treatment very soon.
Physically, that is where I'm at. Emotionally and phychologically are something completely different. Stand by for that roller coaster...
Thursday, December 04, 2008
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.
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!
Wednesday, December 03, 2008
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.
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.
Sunday, November 23, 2008
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!
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!
Friday, February 29, 2008
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
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
Monday, December 03, 2007
First a flood, then a drought
It feels like it's time for an update.
I'm coming towards, what I hope is, the end of my chemo. The schedule has me down for one more treatment and then scans to see how the therapy has worked. I don't feel too positive about it. I'm sure that I'm not done.
The last couple of months have brought a relatively new part of my cancer to light; pain. Until now, the cancer itself has not caused me any pain. When it all started I had an infection that hurt quite a bit. All of the surgeries brought post-op pain with them. At one point I also had some adhesions that brought an almost unbearable pain. With all of that, the cancer itself has never hurt, but of course that has changed. Last month I had to take another trip into the hospital for excruciating pain in my abdomen and chest. The general consensus was that it was the tumors causing the pain. I've been on a fairly regular regimen of narcotics since then. The pain has subsided a little, and I'm less and less dependent on the pills, but it still stings a little.
So that's the basics. On the psychological and emotional fronts, things have been a bit rocky as well. The last few days in particular, have been difficult. I'm back into my head. Back into thinking about the enormity of the situation, about the absolute hugeness of cancer. As I began this post I thought I was going to be able to share with you the sadness and dull grinding of the situation, but now I find that I cannot. You have heard it all before, as I have laid it all out before. Cancer is bad. Chemo is bad. This is horrible. Blah Blah Blah.
I'll try and regroup and see if I can't find the words. For now, know that I'm trying, and the trying is harder. I love you all.
B
I'm coming towards, what I hope is, the end of my chemo. The schedule has me down for one more treatment and then scans to see how the therapy has worked. I don't feel too positive about it. I'm sure that I'm not done.
The last couple of months have brought a relatively new part of my cancer to light; pain. Until now, the cancer itself has not caused me any pain. When it all started I had an infection that hurt quite a bit. All of the surgeries brought post-op pain with them. At one point I also had some adhesions that brought an almost unbearable pain. With all of that, the cancer itself has never hurt, but of course that has changed. Last month I had to take another trip into the hospital for excruciating pain in my abdomen and chest. The general consensus was that it was the tumors causing the pain. I've been on a fairly regular regimen of narcotics since then. The pain has subsided a little, and I'm less and less dependent on the pills, but it still stings a little.
So that's the basics. On the psychological and emotional fronts, things have been a bit rocky as well. The last few days in particular, have been difficult. I'm back into my head. Back into thinking about the enormity of the situation, about the absolute hugeness of cancer. As I began this post I thought I was going to be able to share with you the sadness and dull grinding of the situation, but now I find that I cannot. You have heard it all before, as I have laid it all out before. Cancer is bad. Chemo is bad. This is horrible. Blah Blah Blah.
I'll try and regroup and see if I can't find the words. For now, know that I'm trying, and the trying is harder. I love you all.
B
Friday, October 26, 2007
I stood beneath an orange sky
I've said it before, and I will continue to say it with conviction, because never before in the history of our lexicon have two words been combined to form a single sentence which bears such validity; chemo sucks.
I won't bore you with the horrible details. Those of you who check this blog are well aware of the physical, emotional, and psychological beatings I take.
Here I am though, toughing through it. I don't often strike a self congratulatory tone, but I have to say sometimes I'm impressed with my own ability to deal with it. I'm a strong, resilient, and resourceful sonofabitch. But then you knew that, didn't you?
Or did you? It occurred to me lately that my life has gone through several dramatically different stages over the years. Through them all, I feel that I've always been me, but the circumstances around them have varied. I was speaking with a long time friend the other day and it came up that there are a lot of people in my life right now that don't know what I look like with hair. Yes, that seems silly, but it's symbolic of an often overlooked but none the less important truth; we are all a sum of our parts, but not everyone knows all those pieces. By the way, my hair was brown and curly.
It struck me that there are even some of you who don't know a Billy without cancer. As I move on with my life and meet knew friends, there will be many more of you. Though you may not know what I was like before this disease set up shop in my intestinal track, you still know my strengths, my weaknesses, my philosophy. You know me. But I wanted to share with you some things you may not know.
When I was in grammar school I was "gifted". I skipped grades for certain subjects and was taking high school courses starting in the sixth grade. I grew up in a very close Sicilian family where the women outnumbered the men by 2 to 1. My father first taught me how to fire and care for a gun when I was around 6. I went to an all boys high school. I am an Eagle Scout. I was involved in some questionable activities as a teenager with a certain group of friends. We once threw a party that did considerable damage to a house. I stood on the George Washington Bridge for Hands Across America. I was in a fraternity. Actually, I was president of my chapter briefly. I've always wanted to be an actor, or a director. I have been mugged, shot at, and in quite a few fights. I have attended, at last count, 4 colleges, one of them twice. I have been an EMT since I was 19. I volunteered on a first aid squad and worked for professional services for over 10 years. I've watched people die, I've saved peoples' lives, I've delivered babies. I once swam for over a mile. I worked in strip clubs, and a few other bars, for over 10 years. I was a dj, a bouncer, and a club manager. I dated a few strippers. I hung with VIPs at the Limelight, when it was relevant. I held my mother's hand as she died. I've been in love too many times to count. I was engaged briefly in the late 90's. I've been to about 30 states and 9 countries.
The things you think about when you have cancer!
I hope I get to add a lot more to that list.
I won't bore you with the horrible details. Those of you who check this blog are well aware of the physical, emotional, and psychological beatings I take.
Here I am though, toughing through it. I don't often strike a self congratulatory tone, but I have to say sometimes I'm impressed with my own ability to deal with it. I'm a strong, resilient, and resourceful sonofabitch. But then you knew that, didn't you?
Or did you? It occurred to me lately that my life has gone through several dramatically different stages over the years. Through them all, I feel that I've always been me, but the circumstances around them have varied. I was speaking with a long time friend the other day and it came up that there are a lot of people in my life right now that don't know what I look like with hair. Yes, that seems silly, but it's symbolic of an often overlooked but none the less important truth; we are all a sum of our parts, but not everyone knows all those pieces. By the way, my hair was brown and curly.
It struck me that there are even some of you who don't know a Billy without cancer. As I move on with my life and meet knew friends, there will be many more of you. Though you may not know what I was like before this disease set up shop in my intestinal track, you still know my strengths, my weaknesses, my philosophy. You know me. But I wanted to share with you some things you may not know.
When I was in grammar school I was "gifted". I skipped grades for certain subjects and was taking high school courses starting in the sixth grade. I grew up in a very close Sicilian family where the women outnumbered the men by 2 to 1. My father first taught me how to fire and care for a gun when I was around 6. I went to an all boys high school. I am an Eagle Scout. I was involved in some questionable activities as a teenager with a certain group of friends. We once threw a party that did considerable damage to a house. I stood on the George Washington Bridge for Hands Across America. I was in a fraternity. Actually, I was president of my chapter briefly. I've always wanted to be an actor, or a director. I have been mugged, shot at, and in quite a few fights. I have attended, at last count, 4 colleges, one of them twice. I have been an EMT since I was 19. I volunteered on a first aid squad and worked for professional services for over 10 years. I've watched people die, I've saved peoples' lives, I've delivered babies. I once swam for over a mile. I worked in strip clubs, and a few other bars, for over 10 years. I was a dj, a bouncer, and a club manager. I dated a few strippers. I hung with VIPs at the Limelight, when it was relevant. I held my mother's hand as she died. I've been in love too many times to count. I was engaged briefly in the late 90's. I've been to about 30 states and 9 countries.
The things you think about when you have cancer!
I hope I get to add a lot more to that list.
Monday, October 08, 2007
"All that we see or seem is but a dream within a dream" E.A. Poe
4 am. Do you know what's on TV at 4 am? Lots of infomercials for air beds, or a pain relief light, or food storage bags, or titillating videos featuring hundreds of drunk girls being drunk girls. Maybe if I mounted one of those lights on my new bed I could trick myself into forgetting the day ahead of me and actually get some sleep, but I doubt it. And since I've mastered the bachelor style of buying what I need to make my meals as I need them, and I spent my 20's and early 30's surrounded by drunk girls, I need to find something else. Thankfully the "I Love Lucy" of the 21st century, "Law and Order" is always on, somewhere.
For those of you who are still following me (which seems awfully redundant. who else would be reading this?) here is an update.
I started chemo 3 weeks ago. The first dose was so toxic that I spent an entire week evacuating every drop of fluid from my body. I dropped 24 pounds in 7 days. Instead of my second treatment, my doctor ordered me to belly up to the IV bar for a few days and replenish during week 2. I got a little bit of a break that week, but it was short lived. Last Monday I returned for treatment. My doctor read me the riot act for not coming to see him sooner that first week. I suggested that we just take as read that I will be sick and deal with those consequences. He balked and said that we should adjust the meds and I wouldn't be as sick. He gave me the lowest dose of the drugs and sent me on my way. Turns out the doc might know what he was talking about. I didn't vomit this week at all. I did have a little issue with fluids shooting out of my ass at supersonic speed, but at least I was able to eat and maintain hydration. Tomorrow he'll hear the news and turn the drugs up just a little.
Once again, the drugs do more than just force my body to empty itself from every orifice. Chemo fogs my head, saps all of my energy, obliterates my libido. I spent the week either in bed or on the couch. The walk in between often wears me out. Though, by Saturday some of me had returned. In a rebound affect, my appetites went from one extreme to the other. ALL of them. Someday, when my mind is clear and I can write like I know I can write, I'll try to explain the absolute frustration of that phenomena.
I'm starting to miss my life. Sure, in the last 3 years (it's been 3 years since my first diagnosis) I've tried to grab hold of the moments in between being sick. But sometimes I think about how things were going right before it all started, and man was it sweet. I was at the beginning of what could have been a fantastic chapter, and I'm anxious to get back to it.
After this last round of drugs, my psyche took a big hit. I was spiraling down pretty quick, considering maybe it was time to bring in a professional. But then there was a moment. A text message on my phone. A notification that slapped my face and reminded me why I do this. My sister, my little sister, my love and savior told me she is going to bring another life into our family!!!! While I am excited that there will be another Lamazza-Dall-Klag, the part that gives me strength is that I know this is what my sister really wanted. She is maternal. She loves family. Knowing how happy this makes her is enough to get me to do anything. She, above all others I know, deserves to be happy.
If this week goes not horribly, maybe I'll write more. I have so much more to write, but my brain can't make the connections right now.
For those of you who are still following me (which seems awfully redundant. who else would be reading this?) here is an update.
I started chemo 3 weeks ago. The first dose was so toxic that I spent an entire week evacuating every drop of fluid from my body. I dropped 24 pounds in 7 days. Instead of my second treatment, my doctor ordered me to belly up to the IV bar for a few days and replenish during week 2. I got a little bit of a break that week, but it was short lived. Last Monday I returned for treatment. My doctor read me the riot act for not coming to see him sooner that first week. I suggested that we just take as read that I will be sick and deal with those consequences. He balked and said that we should adjust the meds and I wouldn't be as sick. He gave me the lowest dose of the drugs and sent me on my way. Turns out the doc might know what he was talking about. I didn't vomit this week at all. I did have a little issue with fluids shooting out of my ass at supersonic speed, but at least I was able to eat and maintain hydration. Tomorrow he'll hear the news and turn the drugs up just a little.
Once again, the drugs do more than just force my body to empty itself from every orifice. Chemo fogs my head, saps all of my energy, obliterates my libido. I spent the week either in bed or on the couch. The walk in between often wears me out. Though, by Saturday some of me had returned. In a rebound affect, my appetites went from one extreme to the other. ALL of them. Someday, when my mind is clear and I can write like I know I can write, I'll try to explain the absolute frustration of that phenomena.
I'm starting to miss my life. Sure, in the last 3 years (it's been 3 years since my first diagnosis) I've tried to grab hold of the moments in between being sick. But sometimes I think about how things were going right before it all started, and man was it sweet. I was at the beginning of what could have been a fantastic chapter, and I'm anxious to get back to it.
After this last round of drugs, my psyche took a big hit. I was spiraling down pretty quick, considering maybe it was time to bring in a professional. But then there was a moment. A text message on my phone. A notification that slapped my face and reminded me why I do this. My sister, my little sister, my love and savior told me she is going to bring another life into our family!!!! While I am excited that there will be another Lamazza-Dall-Klag, the part that gives me strength is that I know this is what my sister really wanted. She is maternal. She loves family. Knowing how happy this makes her is enough to get me to do anything. She, above all others I know, deserves to be happy.
If this week goes not horribly, maybe I'll write more. I have so much more to write, but my brain can't make the connections right now.
Tuesday, August 28, 2007
She stands upon Southampton Dock
First off, the surgery went very well. The doctor was able to remove my gallbladder with a laparascope, and I was out in two days. I'm actually back in my own home right now. My belly is a little sore, with seven little incisions about, but other than that I'm physically fine.
Now, onto the truth telling portion of our show.
I'm sad. Many of you who see me on a regular basis don't know this. Many of you who talk to me a lot do not know this. Since this whole ordeal has started there have only been three people who have seen the actual physical manifestations of my grief, and two of them were family. I'm not saying that I've been sad the whole time, but right now that is simply the truth.
It's a truth that is very difficult to admit. Part of me feels that if I let people know that I'm sad, I'm letting them down. Everyone does their best to be supportive and optimistic about the whole situation, and I don't want them to think their efforts are not doing me any good. Honestly, they are. I love all of you and I greatly appreciate all that you have done for me. But tonight, and for the last few weeks, I've been sad. I'm sad that I have cancer, that I still have cancer, that I need to go back to chemo. I'm sad because I miss my mother. I'm sad because in spite of my normally strong outlook on the big picture, there is still a part of me that knows this shit is going to kill me. I'm sad because this is the toughest thing I have ever had to do in my life.
For those of you who will see me after reading this, we will not speak of it. We will joke about the cancer. We will be sarcastic and witty. We will discuss politics, and television, and food, and video games. But we wont talk about my sadness. I know that all of you, in the privacy of your own worlds away from me, feel your sadness for me. You may share that sadness with others, but not with me. You think that if I see you are sad for me that I will in turn become more sad. For the most part this is fine, this is after all, me. When my mother was dying from cancer, I was the biggest joker of them all with her, and she needed that, as do I. My mother had her sad moments, but she kept them from most people. She kept them to share with my sister and my father and me, and even then I suspect she kept many from us. In fact, now I'm sure of it. This is how our relationships are, you and me. We have been friends for years. We always joke about life. We call each other names and make fun of each others proclivities. When there is serious work to be done, we do it, and we do it well. This is the way it has always been and this is the way we will deal with the cancer. It is good. It is me.
I'm not depressed, at least I don't believe I am. I'm not ready to throw in the towel (how I hate using such a trite euphemism). I'm not crying myself to sleep. But this is probably the longest stretch that I have been really sad since the whole thing started. Part of it is because I'm feeling beat down, that I've tried so hard for so long and it's still not done. I'm not sad 24 hours a day either. I've had many moments of happiness in the last few weeks. I've been out, I've seen friends, I've had fun. I'm looking forward to my vacation in a couple of weeks. (though, there is an odd mental struggle I'm having as well. Do I really need a vacation since I've not really been working for a few weeks now?) But still, I am sad. My mind is dull and listless. My body is lazy. My soul is pulling me down by my shoulders.
For those of you who have been following this blog, you know that it is at this point, before I close, that I would turn it all over and tell you that I'm fine. That sharing this with you has been the catharsis I needed and just getting the words out there has helped. That I'm going to be fine. I'm not going to do that tonight. I'm sad.
Now, onto the truth telling portion of our show.
I'm sad. Many of you who see me on a regular basis don't know this. Many of you who talk to me a lot do not know this. Since this whole ordeal has started there have only been three people who have seen the actual physical manifestations of my grief, and two of them were family. I'm not saying that I've been sad the whole time, but right now that is simply the truth.
It's a truth that is very difficult to admit. Part of me feels that if I let people know that I'm sad, I'm letting them down. Everyone does their best to be supportive and optimistic about the whole situation, and I don't want them to think their efforts are not doing me any good. Honestly, they are. I love all of you and I greatly appreciate all that you have done for me. But tonight, and for the last few weeks, I've been sad. I'm sad that I have cancer, that I still have cancer, that I need to go back to chemo. I'm sad because I miss my mother. I'm sad because in spite of my normally strong outlook on the big picture, there is still a part of me that knows this shit is going to kill me. I'm sad because this is the toughest thing I have ever had to do in my life.
For those of you who will see me after reading this, we will not speak of it. We will joke about the cancer. We will be sarcastic and witty. We will discuss politics, and television, and food, and video games. But we wont talk about my sadness. I know that all of you, in the privacy of your own worlds away from me, feel your sadness for me. You may share that sadness with others, but not with me. You think that if I see you are sad for me that I will in turn become more sad. For the most part this is fine, this is after all, me. When my mother was dying from cancer, I was the biggest joker of them all with her, and she needed that, as do I. My mother had her sad moments, but she kept them from most people. She kept them to share with my sister and my father and me, and even then I suspect she kept many from us. In fact, now I'm sure of it. This is how our relationships are, you and me. We have been friends for years. We always joke about life. We call each other names and make fun of each others proclivities. When there is serious work to be done, we do it, and we do it well. This is the way it has always been and this is the way we will deal with the cancer. It is good. It is me.
I'm not depressed, at least I don't believe I am. I'm not ready to throw in the towel (how I hate using such a trite euphemism). I'm not crying myself to sleep. But this is probably the longest stretch that I have been really sad since the whole thing started. Part of it is because I'm feeling beat down, that I've tried so hard for so long and it's still not done. I'm not sad 24 hours a day either. I've had many moments of happiness in the last few weeks. I've been out, I've seen friends, I've had fun. I'm looking forward to my vacation in a couple of weeks. (though, there is an odd mental struggle I'm having as well. Do I really need a vacation since I've not really been working for a few weeks now?) But still, I am sad. My mind is dull and listless. My body is lazy. My soul is pulling me down by my shoulders.
For those of you who have been following this blog, you know that it is at this point, before I close, that I would turn it all over and tell you that I'm fine. That sharing this with you has been the catharsis I needed and just getting the words out there has helped. That I'm going to be fine. I'm not going to do that tonight. I'm sad.
Monday, August 20, 2007
Will someone please tell Barney those are not candy
Tomorrow. The day after today. The day before the day after tomorrow. A week from a week and a day ago. Domani. (in actuality, for clarity's sake, we're talking Tuesday, August 21st here).
Surgery.
They're taking out my gallbladder. I'm going to wind up with nothing more than a hollow cavern where I once had a working digestive system.
I'm going to write something soon. Something beautiful and prophetic and epic, and melodic, and all sorts of nice stuff. It's been a while, but I can feel it in there somewhere. I just hope it's not in my gallbladder.
See you all in a week or so.
Surgery.
They're taking out my gallbladder. I'm going to wind up with nothing more than a hollow cavern where I once had a working digestive system.
I'm going to write something soon. Something beautiful and prophetic and epic, and melodic, and all sorts of nice stuff. It's been a while, but I can feel it in there somewhere. I just hope it's not in my gallbladder.
See you all in a week or so.
Monday, July 30, 2007
Ward, you were a little hard on the Beaver last night
Good news friends, I didn't have to go to chemo today!
Oh wait....this is me we're talking about. Hmmmm There has to be a catch.
The summer started out promising, looking like I was going to be able to enjoy a few months of cancer free fun. But of course nastiness reared its head once again and the cancer slithered out from behind whatever rock it called home. It was a rough couple of weeks there. I was pretty angry. I was scared. I wasn't sure how I was going to make it through another round of chemo. But I've been through this before. I retreated for a bit, but came out the other end. As always I settled on the "it could be worse" approach and steeled myself for another round of sickening medicine. I was ok with it, as much as anyone could be. But then, oh yes then, right then, there were the stones. The pain that I'm having in my abdomen, blinding body doubling pain which leads to projectile vomiting, is being induced by gallstones. This is an issue that has to be resolved before I can start chemo.
"Oh Billy, that's not too bad" you say? "They can do that with a scope and a small incision" you think? Well, first off let's just say that ENOUGH IS ENOUGH already. Cancer, infections, adhesions, more cancer, more infections and now gallstones????
To top it off, my surgeon is not sure that he can remove my gallbladder with a laparoscope. Seems that the abundance of surgeries I've already have may have left far too much scar tissue right in the path that he would normally use. Chances are pretty good that I'll be back on the operating table by the end of the week, flayed open once again.
I'm not beaten yet, not much. But I have to ask; How much longer to I have to be upbeat? Why do I have to "look on the bright side"? Why is it necessary to "keep my chin up", "fight the good fight", "don't give up"?
Stay tuned. I'm sure there's more good news to come. (yes, that was dripping with sarcasm)
Oh wait....this is me we're talking about. Hmmmm There has to be a catch.
The summer started out promising, looking like I was going to be able to enjoy a few months of cancer free fun. But of course nastiness reared its head once again and the cancer slithered out from behind whatever rock it called home. It was a rough couple of weeks there. I was pretty angry. I was scared. I wasn't sure how I was going to make it through another round of chemo. But I've been through this before. I retreated for a bit, but came out the other end. As always I settled on the "it could be worse" approach and steeled myself for another round of sickening medicine. I was ok with it, as much as anyone could be. But then, oh yes then, right then, there were the stones. The pain that I'm having in my abdomen, blinding body doubling pain which leads to projectile vomiting, is being induced by gallstones. This is an issue that has to be resolved before I can start chemo.
"Oh Billy, that's not too bad" you say? "They can do that with a scope and a small incision" you think? Well, first off let's just say that ENOUGH IS ENOUGH already. Cancer, infections, adhesions, more cancer, more infections and now gallstones????
To top it off, my surgeon is not sure that he can remove my gallbladder with a laparoscope. Seems that the abundance of surgeries I've already have may have left far too much scar tissue right in the path that he would normally use. Chances are pretty good that I'll be back on the operating table by the end of the week, flayed open once again.
I'm not beaten yet, not much. But I have to ask; How much longer to I have to be upbeat? Why do I have to "look on the bright side"? Why is it necessary to "keep my chin up", "fight the good fight", "don't give up"?
Stay tuned. I'm sure there's more good news to come. (yes, that was dripping with sarcasm)
Monday, July 16, 2007
Ten ways to Sunday
Friday the 13th. Sure, it sounds ominous, but does it have to be? Was I destined for bad news last week when I visited my oncologist to get the results from my latest cat scan? Would this dark day of dark days hold fast its reputation? You bet your sweet patootie it would!!! I've got cancer. Still. "Several" lymph nodes, is how they put it. So it's back to chemo for me, starting on July 30th.
This next section is devoid of insight, poetry, journalistic integrity, or any redeeming social value what so ever. If you are of slight mind and delicate sensibilities, and are easily offended by words, go no further. Then again, if you are of slight mind and delicate sensibilities, and are easily offended by words, you're not reading this, because you and I probably wouldn't get along anyway.
This goddamnmotherfuckercocksuckerassreamingshiteatingsonofamotherlesswhore disease just won't seem to go away!!! I'm so fucking pissed! How much more of this shit am I expected to deal with?!?! I've lost out on half of my 30's, and I'll be goddamn lucky to make it anywhere into my 40's. Sure, I'm alive, but this is living? Having to shove gallons of poison into my veins every few months? Having to spend my summers puking up every last bit of chum? Wasting away until I look like a fuckin heroin addicted anorexic? Having to curl up in a mental haze while having some vague sense of the reality of the world around me? What the fuck did I ever do to you? You'd think I'd spent my life molesting puppies and painting apocryphal scenes with the entrails of human sacrifices. This totally sucks! SUCKS!!!!!!!!!!!
Whew! Ok, got that out.
I'm not about to tell you there was a "good" part of the news I got, because in reality there is none. Sure, it could have been worse, I could be writing my own eulogy, but the fact is that when you are told you still have cancer, after 3 years, and that you have to go back to the worst hell on earth that you have ever experienced, none of it is actually good. I won't refer to it as "good" news but for those of you who need to find the bright side, I offer you a few "facts": The cancer hasn't spread to organs, it looks like it's in the lymph nodes; the last time I took this particular chemo drug, it did a very good job on the tumors I had at the time; this most likely isn't new cancer, it's just cells that have avoided all the previous attempts at banishing them from my body.
I was having fun pretending I was well. The summer had started very well. There was trips down the Shore, a wedding, a visit from Dave, a new apartment, a new position at work. But now it stops. The brakes have been hit hard and I've got two weeks to skid into the abyss. I don't know how bad the chemo will be, but I'd put my money on "horrible". I'm sure by now you know the drill. When I'm too sick to care for myself, and you all know how much I LOVE that, I'll be staying at Dad's. I will, however, be doing everything in my power to spend as much time as possible in my own place.
Oh, yeah...forgot to mention, I'm also having some sort of "red hot iron jabbed into my stomach" pains that so far, doesn't seem to be directly related to my current infestation of carcinoma. It got so bad that I had to hit the ER on Saturday and get dosed up with dilaudin just so I could stop crying. I have to go see some other docs to figure out what the hell that is before I can start the chemo. Oh joy of joys!
That's it for now. I'm going to Kentucky tomorrow for a couple of days for work. I hope I can make it through that. Then it's back home on Thursday and I'll try and figure out where my head is at then. Should I party my last couple of weekends before chemo? That is, of course, if my body will actually let me. Or will I just retreat into myself, watch a lot of movies, play a lot of X-Box, and sulk quietly until they come to take me away? Yeah, I know what you want, but you know that sometimes I just have to be left alone. I'll figure it out later.
This next section is devoid of insight, poetry, journalistic integrity, or any redeeming social value what so ever. If you are of slight mind and delicate sensibilities, and are easily offended by words, go no further. Then again, if you are of slight mind and delicate sensibilities, and are easily offended by words, you're not reading this, because you and I probably wouldn't get along anyway.
This goddamnmotherfuckercocksuckerassreamingshiteatingsonofamotherlesswhore disease just won't seem to go away!!! I'm so fucking pissed! How much more of this shit am I expected to deal with?!?! I've lost out on half of my 30's, and I'll be goddamn lucky to make it anywhere into my 40's. Sure, I'm alive, but this is living? Having to shove gallons of poison into my veins every few months? Having to spend my summers puking up every last bit of chum? Wasting away until I look like a fuckin heroin addicted anorexic? Having to curl up in a mental haze while having some vague sense of the reality of the world around me? What the fuck did I ever do to you? You'd think I'd spent my life molesting puppies and painting apocryphal scenes with the entrails of human sacrifices. This totally sucks! SUCKS!!!!!!!!!!!
Whew! Ok, got that out.
I'm not about to tell you there was a "good" part of the news I got, because in reality there is none. Sure, it could have been worse, I could be writing my own eulogy, but the fact is that when you are told you still have cancer, after 3 years, and that you have to go back to the worst hell on earth that you have ever experienced, none of it is actually good. I won't refer to it as "good" news but for those of you who need to find the bright side, I offer you a few "facts": The cancer hasn't spread to organs, it looks like it's in the lymph nodes; the last time I took this particular chemo drug, it did a very good job on the tumors I had at the time; this most likely isn't new cancer, it's just cells that have avoided all the previous attempts at banishing them from my body.
I was having fun pretending I was well. The summer had started very well. There was trips down the Shore, a wedding, a visit from Dave, a new apartment, a new position at work. But now it stops. The brakes have been hit hard and I've got two weeks to skid into the abyss. I don't know how bad the chemo will be, but I'd put my money on "horrible". I'm sure by now you know the drill. When I'm too sick to care for myself, and you all know how much I LOVE that, I'll be staying at Dad's. I will, however, be doing everything in my power to spend as much time as possible in my own place.
Oh, yeah...forgot to mention, I'm also having some sort of "red hot iron jabbed into my stomach" pains that so far, doesn't seem to be directly related to my current infestation of carcinoma. It got so bad that I had to hit the ER on Saturday and get dosed up with dilaudin just so I could stop crying. I have to go see some other docs to figure out what the hell that is before I can start the chemo. Oh joy of joys!
That's it for now. I'm going to Kentucky tomorrow for a couple of days for work. I hope I can make it through that. Then it's back home on Thursday and I'll try and figure out where my head is at then. Should I party my last couple of weekends before chemo? That is, of course, if my body will actually let me. Or will I just retreat into myself, watch a lot of movies, play a lot of X-Box, and sulk quietly until they come to take me away? Yeah, I know what you want, but you know that sometimes I just have to be left alone. I'll figure it out later.
Monday, June 25, 2007
mmmmmmmm, forbidden doughnut
Well hello there happy reader, and welcome back to my life. I've been on a bit of a hiatus, but it's time to get back to this thing we call Billy's Colon. Since it's been a while, I have a few things to tell you about, so this one will be a doozy.
Let's start with recapping this last weekend; Dave...drinking...Jody and David and Eileen and Karen ... rehersal ... Tom and Maggie ... drinking ... Jon ... bikes ... drinking ... James ... wedding ... drinking ... Marci ... drinking ... pizza ... pass out ... 4 hour drive to a graduation/birthday party. There were lots of other people, too many names to remember though. Might have something to do with the drinking. Oh, it was a wonderful weekend.
'Lil Jody is a pal from back in the college days. This past Saturday she wed a lovely young bloke by the name of David and the two of them were kind enough to invite me to the festivities. It was a reunion of sorts; there were quite a few people who I haven't seen since those wonderful haze ridden days at Bethany. I was unbelievably happy to see them all again. Back in the day, some I hung out with, Jon, Tom and Maggie (though it took Tom a while to remember me, you sick sick bastard) and some who were passing acquaintances, but have now become quick and close friends, James and Marci. I really could go on and on about how great it was to be with these people and tell you about all the fun we had, but that would just take too long. Since this is my little place to talk about cancer, let me tell you a cancer story about this weekend.
Ok, so now I get it. I've mentioned a few times that I feel like sometimes people don't quite get that I have cancer, that when I'm well I feel like it's hard for people to understand what is going on. Well now I can see why, and Marci be her name. I'm sure that there had to be more than one occasion when our paths crossed during our tour of duty in the Ohio Valley, though neither of us could recall specific incidents. Our times there overlapped for about a semester, but as the school was at most, populated by 800 students, there simply must have been a party or event we both attended. She is a wonderfully happy, scary smart, and absolutely adorable woman! During our far too brief reunion this weekend she made me laugh, made me think, made me trickle a bit of beer through my nose. As if there wasn't enough about those couple of days that added quality to my life, those baby blues of hers would have been worth the trip alone. And oh, did I mention, Marci beat cancer!!!??!!!! Yup, 10 years my junior, and she has had to fight the fight as well. She has a fantastic attitude about her battle. She's strong, and optimistic, and has a great sense of humor about it. I know that there have been times, plenty of times, that she has been a mere shell, a hairless zombie tossing her cookies from dawn til dusk, but I never would have known as James, Dave, Marci and myself sat, laughing our asses off, eating pizza at 3 am, curbside, listening to the crash of the Atlantic. Surely Marci and I want this to be our lives, we don't want people to treat us differently, and it is a triumph that we can exist in a world where it is hard for someone to look at us and know our bodies have betrayed us. Marci, for the glimpse of what it is like to see me from the other side, and for so many other things you brought to me in that brief 24 hours, I thank you. I hope we don't wait another 10 years for pizza.
This weekend's harried whirlwind of activity has been indicative of my life for the last month. I have been hanging out down the shore with good friends, where I met a lovely bartender with whom I'm quite smitten. I've been very busy with a new position at work. I think I'm really going to enjoy the new job, though for now it is a bit daunting. Those of you who know me well, know that the challenge is what I'm going to enjoy the most. I've also been in the process of moving to a new apartment in Bayonne. I'm going to be back living all on my own. Though I do love Vinny like a brother, and for the most part I've lived without him for the last few months, I am looking forward to being on my own again.
But. Let me repeat that. BUT as was expected, there's a small roadblock on the horizon. I was having such a good time pretending that the last 3 years were nothing more than an illusion, and then today I took a peek at my calender for the next couple of weeks. Guess what's coming up folks. It's a CAT scan!!! That ugly little test that over the last few years has given me plenty of anxious and sleepless nights. The test will be on July 9th, which means I should get the results around the 13th. FRIDAY the 13th. I know, I know, that is a silly superstition, but I feel still worth mentioning. I'm not by any means convinced that the news on FRIDAY THE 13th will be bad, but I'm not counting it out either. I don't feel like I have any new growth, but I also didn't know for quite some time about the original tumor. I have plenty to keep my mind occupied for the next couple of weeks with moving and work, so perhaps the wait won't be too bad.
The last surgeries took a toll on my digestive tract, and I'm sure I'm not helping by living like I've never even had a cold, but that is me. You know that. You know me.
So, for now, that about wraps it up. Life is pretty good, even with the occasional stomach cramp. I'm going to try and write some more. Some more poetry, some more blogs, maybe some letters. I want you all to know that I always deeply appreciate that you check up on me!! I've been quite lucky to have this support system. I'll keep you updated on the next CT exam.
Billy
Let's start with recapping this last weekend; Dave...drinking...Jody and David and Eileen and Karen ... rehersal ... Tom and Maggie ... drinking ... Jon ... bikes ... drinking ... James ... wedding ... drinking ... Marci ... drinking ... pizza ... pass out ... 4 hour drive to a graduation/birthday party. There were lots of other people, too many names to remember though. Might have something to do with the drinking. Oh, it was a wonderful weekend.
'Lil Jody is a pal from back in the college days. This past Saturday she wed a lovely young bloke by the name of David and the two of them were kind enough to invite me to the festivities. It was a reunion of sorts; there were quite a few people who I haven't seen since those wonderful haze ridden days at Bethany. I was unbelievably happy to see them all again. Back in the day, some I hung out with, Jon, Tom and Maggie (though it took Tom a while to remember me, you sick sick bastard) and some who were passing acquaintances, but have now become quick and close friends, James and Marci. I really could go on and on about how great it was to be with these people and tell you about all the fun we had, but that would just take too long. Since this is my little place to talk about cancer, let me tell you a cancer story about this weekend.
Ok, so now I get it. I've mentioned a few times that I feel like sometimes people don't quite get that I have cancer, that when I'm well I feel like it's hard for people to understand what is going on. Well now I can see why, and Marci be her name. I'm sure that there had to be more than one occasion when our paths crossed during our tour of duty in the Ohio Valley, though neither of us could recall specific incidents. Our times there overlapped for about a semester, but as the school was at most, populated by 800 students, there simply must have been a party or event we both attended. She is a wonderfully happy, scary smart, and absolutely adorable woman! During our far too brief reunion this weekend she made me laugh, made me think, made me trickle a bit of beer through my nose. As if there wasn't enough about those couple of days that added quality to my life, those baby blues of hers would have been worth the trip alone. And oh, did I mention, Marci beat cancer!!!??!!!! Yup, 10 years my junior, and she has had to fight the fight as well. She has a fantastic attitude about her battle. She's strong, and optimistic, and has a great sense of humor about it. I know that there have been times, plenty of times, that she has been a mere shell, a hairless zombie tossing her cookies from dawn til dusk, but I never would have known as James, Dave, Marci and myself sat, laughing our asses off, eating pizza at 3 am, curbside, listening to the crash of the Atlantic. Surely Marci and I want this to be our lives, we don't want people to treat us differently, and it is a triumph that we can exist in a world where it is hard for someone to look at us and know our bodies have betrayed us. Marci, for the glimpse of what it is like to see me from the other side, and for so many other things you brought to me in that brief 24 hours, I thank you. I hope we don't wait another 10 years for pizza.
This weekend's harried whirlwind of activity has been indicative of my life for the last month. I have been hanging out down the shore with good friends, where I met a lovely bartender with whom I'm quite smitten. I've been very busy with a new position at work. I think I'm really going to enjoy the new job, though for now it is a bit daunting. Those of you who know me well, know that the challenge is what I'm going to enjoy the most. I've also been in the process of moving to a new apartment in Bayonne. I'm going to be back living all on my own. Though I do love Vinny like a brother, and for the most part I've lived without him for the last few months, I am looking forward to being on my own again.
But. Let me repeat that. BUT as was expected, there's a small roadblock on the horizon. I was having such a good time pretending that the last 3 years were nothing more than an illusion, and then today I took a peek at my calender for the next couple of weeks. Guess what's coming up folks. It's a CAT scan!!! That ugly little test that over the last few years has given me plenty of anxious and sleepless nights. The test will be on July 9th, which means I should get the results around the 13th. FRIDAY the 13th. I know, I know, that is a silly superstition, but I feel still worth mentioning. I'm not by any means convinced that the news on FRIDAY THE 13th will be bad, but I'm not counting it out either. I don't feel like I have any new growth, but I also didn't know for quite some time about the original tumor. I have plenty to keep my mind occupied for the next couple of weeks with moving and work, so perhaps the wait won't be too bad.
The last surgeries took a toll on my digestive tract, and I'm sure I'm not helping by living like I've never even had a cold, but that is me. You know that. You know me.
So, for now, that about wraps it up. Life is pretty good, even with the occasional stomach cramp. I'm going to try and write some more. Some more poetry, some more blogs, maybe some letters. I want you all to know that I always deeply appreciate that you check up on me!! I've been quite lucky to have this support system. I'll keep you updated on the next CT exam.
Billy
Thursday, May 17, 2007
That is the ugliest mustache I have ever seen
As many of you may know, today was D-day with my oncologist. I was to get the results of my latest cat scan and discuss the next round of chemo. I was not really looking forward to this. I haven't slept well in the last week. Plus I was having a really good time the last month and a half, being able to forget that I have cancer.
Well my friends and friendettes, great news!!! My scan came back clean. Now, this doesn't mean the cancer is gone, but it does mean that it's not growing anything new. Also, my doctor decided to hold off on the chemo. He feels that since I'm in no immediate need right now, and that I'm still healing from the last surgeries, and we don't want to use up all the drugs which would reduce their efficacy, that I should wait before we start anything. My next scan is in two months. Oh, we also decided that we would do scans every two months rather than every four so that we can catch the next tumors earlier.
So....I have at least a couple of more months to enjoy!!! And, if all goes well next scan, that should bring me all the way through the summer. This is going to be a GREAT summer!!! I can't wait to see everyone at Jody's wedding.
This has been a great week for news. On top of the cancer news, I found out I have a new position at work, which I really wanted and look forward to.
I'll post more, soon I hope. But for now I'm just going to be ridiculously happy and enjoy the time I have!
Well my friends and friendettes, great news!!! My scan came back clean. Now, this doesn't mean the cancer is gone, but it does mean that it's not growing anything new. Also, my doctor decided to hold off on the chemo. He feels that since I'm in no immediate need right now, and that I'm still healing from the last surgeries, and we don't want to use up all the drugs which would reduce their efficacy, that I should wait before we start anything. My next scan is in two months. Oh, we also decided that we would do scans every two months rather than every four so that we can catch the next tumors earlier.
So....I have at least a couple of more months to enjoy!!! And, if all goes well next scan, that should bring me all the way through the summer. This is going to be a GREAT summer!!! I can't wait to see everyone at Jody's wedding.
This has been a great week for news. On top of the cancer news, I found out I have a new position at work, which I really wanted and look forward to.
I'll post more, soon I hope. But for now I'm just going to be ridiculously happy and enjoy the time I have!
Thursday, May 10, 2007
Poem
It's been a while since I've written something. This popped out after a curious image flashed across my tv for a couple of seconds.
remember when our world was in black and white?
when the days were free
and we played at night
the streets our world
in children's sight
it all seemed big
and lamps shone bright
remember when our world was in black and white?
remember when our world was in black and white?
when grown-ups were giant
and we hid from their sight
we tumbled and laughed
and played polite
we phoned with cups
with string pulled tight
remember when our world was in black and white?
remember when our world was in black and white?
we worried over candy
used pillows to fight
we stressed over the loss
of a ball or a kite
we feared the closet
and kept on the light
remember when our world was in black and white?
remember when our world was in black and white?
next week was too distant
our birthday far from sight
santa took for ever
to visit us that night
there was no week, or month or year
there was just good night
remember when our world was in black and white?
remember when our world was in black and white?
we tumbled off our skates
or fell from short height
a simple hug and kiss
would make it all alright
finding that lost toy
would fill us with delight
remember when our world was in black and white?
remember when our world was in black and white?
our universe was in our home
the walls held us tight
our moms held the court
our dads played the knight
our sisters on our left
our brothers on our right
remember when our world was in black and white?
remember when our world was in black and white?
when the days were free
and we played at night
the streets our world
in children's sight
it all seemed big
and lamps shone bright
remember when our world was in black and white?
remember when our world was in black and white?
when grown-ups were giant
and we hid from their sight
we tumbled and laughed
and played polite
we phoned with cups
with string pulled tight
remember when our world was in black and white?
remember when our world was in black and white?
we worried over candy
used pillows to fight
we stressed over the loss
of a ball or a kite
we feared the closet
and kept on the light
remember when our world was in black and white?
remember when our world was in black and white?
next week was too distant
our birthday far from sight
santa took for ever
to visit us that night
there was no week, or month or year
there was just good night
remember when our world was in black and white?
remember when our world was in black and white?
we tumbled off our skates
or fell from short height
a simple hug and kiss
would make it all alright
finding that lost toy
would fill us with delight
remember when our world was in black and white?
remember when our world was in black and white?
our universe was in our home
the walls held us tight
our moms held the court
our dads played the knight
our sisters on our left
our brothers on our right
remember when our world was in black and white?
Monday, May 07, 2007
And here we go again...
For the last month or so I have been having the time of my life. It's been the healthiest point of the last two and a half years. I've gone to AC a couple of times, hung out with many friends, and even took a quick trip to Europe (see the previous blog). I've come to live my life in the spaces in between. In the times between chemo and surgery. In the time between hospitals and home rest. In the times between symptoms and not.
I had a cat scan today. The last one, in March, was clean. This one was a prelude to my next visit with my oncologist. He wants to know how things are looking before we start chemo again. Yup, that's right, chemo.
I've mentioned this before, but it bears repeating. Sometimes I think it's difficult for people who know me to understand the actual enormity of my disease. And believe me, it has nothing to do with them. It's just that I see them when I'm well, in those spaces, and when I'm well, it is difficult to imagine that there is anything wrong with me. Most people don't see me at the worst. The only indication they get of insidiousness of the cellular junkyard that is my abdominal cavity is this here blog. The fact is that I still, and pretty much will forever, have cancer. It doesn't look like it's going anywhere. I just have to keep beating it back and keep it a bay.
The next few days will bring some anxiety, a couple of sleepless nights, and more than a few fruit flavored Tums.
I should have the results by the end of this week, or the beginning of next. I'll let ya know what happens so stay tuned and I'll see you back here, same bat time, same bat channel.
I had a cat scan today. The last one, in March, was clean. This one was a prelude to my next visit with my oncologist. He wants to know how things are looking before we start chemo again. Yup, that's right, chemo.
I've mentioned this before, but it bears repeating. Sometimes I think it's difficult for people who know me to understand the actual enormity of my disease. And believe me, it has nothing to do with them. It's just that I see them when I'm well, in those spaces, and when I'm well, it is difficult to imagine that there is anything wrong with me. Most people don't see me at the worst. The only indication they get of insidiousness of the cellular junkyard that is my abdominal cavity is this here blog. The fact is that I still, and pretty much will forever, have cancer. It doesn't look like it's going anywhere. I just have to keep beating it back and keep it a bay.
The next few days will bring some anxiety, a couple of sleepless nights, and more than a few fruit flavored Tums.
I should have the results by the end of this week, or the beginning of next. I'll let ya know what happens so stay tuned and I'll see you back here, same bat time, same bat channel.
Oh, I love to go a'wandering
There will only be a little cancer in this post. I got back from Amsterdam last week and this is the tale. Some details have been omitted for brevity's sake. But all the good parts are still there.
Dougie and I arrived in Amsterdam on Saturday morning around 8am and promptly headed to a couple of cold Heinekens. Michele met us at the airport, and we all hung around waiting for other friends to get in from various locales. After we all gathered for a while and said our hellos, Dougie and I were off to another flight, this one to England. We went to Doug's parent's house, and dined with them. Saturday night was spent in the Tap, Dougie's local pub in Abingdon. As we sat around sipping pints, many people came and went and it seemed that every one of them knew Dougie. Every few minutes I could hear, "Dougie! Mate! How have you been?" or "Doug! Welcome back." I shall now and forever refer to him as Lord Dougie, Benevolent and Wise Ruler of Abingdon. Night one, over and out.
After a very late night out I caught a few z's and awoke early for our flight back to Amsterdam.
We relaxed for a little bit and then it was time to start the Queen's Day Marathon. We walked over to Leidseplein to meet up with the Group. The Group, by the way, is an eclectic gathering of anywhere between 20 and 30 people at any given time, representing about half a dozen countries. We've all been friends for years, some longer than others. It's been two years since I've seen most of them (thank you stupid tumor). I would love to tell you all about each and every one of them, but I want to keep this blog manageable. Trust me, they all ROCK! The hugs were given out like candy on Easter, the kisses thrown about liberally, the laughter rang throughout the streets, and the beer poured from every tap. I had to recount my cancer story more than a few times, but I didn't mind a bit. I was incredibly happy to see all these people again and to celebrate the life I have fought for over the couple of years. Later we all went for a lovely dinner at a Japanese hibachi restaurant. Following dinner was rounds at our regular haunt on Leidseplein, the Black and White. Somewhere around 2 in the morning, Dougie, Reede and I headed over to my favorite pub in all of Amsterdam, the Turnpike. There I met up with Swannet, one of the sexiest Dutch women I know (yes Ian, I'm aware she's your wife, but let's be honest here) and Henne, the owner and good friend. Dougie and I stumbled home around 3:30. Night two, in the bag.
Monday was Queen's Day. The Group met up at the Turnpike. Now, let me tell you a little something about the friendship that I share with this gang of people. I met most of them back in 2003, my first ever Queen's Day. Since then we have all remained close in spite of our geographical differences. The last time I saw them all was the following year, just before I got sick. In the time I've been absent, they have all kept in contact and followed my situation. The decision to gather at the Turnpike was for my consideration. Queen's Day is usually spent walking around the entire city visiting various pubs but knowing feeling that the usual journey might be a bit too much for me, and knowing that the Turnpike was my favorite spot, they all decided to hang out there for the day. On top of that, Dougie and Helen (my Australian Queen) arranged for everyone to sport these cool colon cancer tattoos!
As the day wound down we traveled to our traditional Queen's Day dinner spot, The Cafe de Klos. The ribs at the Klos are absolutely epic and worthy of a blog all their own, but for now I will leave it at that.
With our bellies full and the night upon us it was back to Leidseplein. Once again it was a few pints at the Black and White and then over to Bourbon Street. By the time we were partying at Bourbon Street, the gaggle was Reede, Dougie, Hassan and myself along with three very lovely Scottish girls who were friends of friends. We closed the club and Dougie, Reede and I found our way back to the Turnpike. It was somewhere around 4:30 when Dougie and I collapsed back at the flat. Night three, accomplished.
On Tuesday, Dougie and I decided we were not going to stay out too late. The weather was gorgeous and our day began with an Irish breakfast. Later that evening we returned to Leidseplein to catch a very important football match for Dougie's Liverpool squad. After a nail biter Liverpool emerged victorious and the night continued. There was dinner at an Indian restaurant and then back over to Bourbon Street. Dougie and I found our way back to the flat somewhere around 3. So much for not staying out late. Day four, said and done.
There are many other stories to tell. Many other things I could tell you about the wonderful people I was with, but as I've mentioned before, I want to keep this as brief as I can.
Here are two sites with some pictures from Queen's Day.
Gordon's Pictures
Reede's Pictures
Wednesday was the flight home. I miss that place already.
Dougie and I arrived in Amsterdam on Saturday morning around 8am and promptly headed to a couple of cold Heinekens. Michele met us at the airport, and we all hung around waiting for other friends to get in from various locales. After we all gathered for a while and said our hellos, Dougie and I were off to another flight, this one to England. We went to Doug's parent's house, and dined with them. Saturday night was spent in the Tap, Dougie's local pub in Abingdon. As we sat around sipping pints, many people came and went and it seemed that every one of them knew Dougie. Every few minutes I could hear, "Dougie! Mate! How have you been?" or "Doug! Welcome back." I shall now and forever refer to him as Lord Dougie, Benevolent and Wise Ruler of Abingdon. Night one, over and out.
After a very late night out I caught a few z's and awoke early for our flight back to Amsterdam.
We relaxed for a little bit and then it was time to start the Queen's Day Marathon. We walked over to Leidseplein to meet up with the Group. The Group, by the way, is an eclectic gathering of anywhere between 20 and 30 people at any given time, representing about half a dozen countries. We've all been friends for years, some longer than others. It's been two years since I've seen most of them (thank you stupid tumor). I would love to tell you all about each and every one of them, but I want to keep this blog manageable. Trust me, they all ROCK! The hugs were given out like candy on Easter, the kisses thrown about liberally, the laughter rang throughout the streets, and the beer poured from every tap. I had to recount my cancer story more than a few times, but I didn't mind a bit. I was incredibly happy to see all these people again and to celebrate the life I have fought for over the couple of years. Later we all went for a lovely dinner at a Japanese hibachi restaurant. Following dinner was rounds at our regular haunt on Leidseplein, the Black and White. Somewhere around 2 in the morning, Dougie, Reede and I headed over to my favorite pub in all of Amsterdam, the Turnpike. There I met up with Swannet, one of the sexiest Dutch women I know (yes Ian, I'm aware she's your wife, but let's be honest here) and Henne, the owner and good friend. Dougie and I stumbled home around 3:30. Night two, in the bag.
Monday was Queen's Day. The Group met up at the Turnpike. Now, let me tell you a little something about the friendship that I share with this gang of people. I met most of them back in 2003, my first ever Queen's Day. Since then we have all remained close in spite of our geographical differences. The last time I saw them all was the following year, just before I got sick. In the time I've been absent, they have all kept in contact and followed my situation. The decision to gather at the Turnpike was for my consideration. Queen's Day is usually spent walking around the entire city visiting various pubs but knowing feeling that the usual journey might be a bit too much for me, and knowing that the Turnpike was my favorite spot, they all decided to hang out there for the day. On top of that, Dougie and Helen (my Australian Queen) arranged for everyone to sport these cool colon cancer tattoos!
As the day wound down we traveled to our traditional Queen's Day dinner spot, The Cafe de Klos. The ribs at the Klos are absolutely epic and worthy of a blog all their own, but for now I will leave it at that.
With our bellies full and the night upon us it was back to Leidseplein. Once again it was a few pints at the Black and White and then over to Bourbon Street. By the time we were partying at Bourbon Street, the gaggle was Reede, Dougie, Hassan and myself along with three very lovely Scottish girls who were friends of friends. We closed the club and Dougie, Reede and I found our way back to the Turnpike. It was somewhere around 4:30 when Dougie and I collapsed back at the flat. Night three, accomplished.
On Tuesday, Dougie and I decided we were not going to stay out too late. The weather was gorgeous and our day began with an Irish breakfast. Later that evening we returned to Leidseplein to catch a very important football match for Dougie's Liverpool squad. After a nail biter Liverpool emerged victorious and the night continued. There was dinner at an Indian restaurant and then back over to Bourbon Street. Dougie and I found our way back to the flat somewhere around 3. So much for not staying out late. Day four, said and done.
There are many other stories to tell. Many other things I could tell you about the wonderful people I was with, but as I've mentioned before, I want to keep this as brief as I can.
Here are two sites with some pictures from Queen's Day.
Gordon's Pictures
Reede's Pictures
Wednesday was the flight home. I miss that place already.
Monday, April 23, 2007
Sophie seems a bit tweeked tonight
Today's good news/bad news about my cancer.
Good News: I gained a few pounds. I'm up to 205
Bad News: I have to shave my belly
After I left the hospital last, I still had open wounds from my surgery and they were bandaged. The bandages had to be changed on a daily basis until the wounds no longer needed to be packed with gauze. I had a nurse come and take care of this situation for the last month or so. The bandages were stretched across my belly and secured with tape. Let me fill you in on some information about tape that you may not be aware of. There seems to be two choices in medical tape. You can either have tape that holds the bandages on by adhering with super strength and winds up peeling off sections of your skin when you remove it. Or you can have tape that is gentle on the epidermis, but often falls off while you're sleeping, or walking, or sitting, or breathing. The last time I was on chemo, I lost some of my body hair. Not all of it, and not uniformly, but still there was some thinning. One of the places that saw a little less foliage was on my belly. Today I visited my surgeon and he said the wounds were healing well. I no longer need to have a nurse change the bandages, I can do it myself. I also don't need the bandaging to be as expansive, stretching two bandages across my gut and taping them down, I can go with simple 4x4s over the two remaining sites.
So how does this all tie together? Well, since you've decided to take the long road with me, I'll bring it all home now. When my belly hair was sparse, and the bandages wrapped around to my sides, the tape wasn't that difficult to adhere or remove. But now the hair has filled back in, and it's decided to sprout thickest right around the sites of the wounds. In a proactive attempt to mitigate the pain involved with bandage removal I'm going to shave. Nobody tells you this when you first get cancer. The doctors don't tell you. The support groups don't tell you. The books don't tell you. I'm going to put together a little class on all the stupid stuff people have to go through with cancer. Dave can help teach.
Oh, and on another good note, I'm going to Amsterdam on Friday!!!! One last big bash before the new round of chemo. That's life baby.
Good News: I gained a few pounds. I'm up to 205
Bad News: I have to shave my belly
After I left the hospital last, I still had open wounds from my surgery and they were bandaged. The bandages had to be changed on a daily basis until the wounds no longer needed to be packed with gauze. I had a nurse come and take care of this situation for the last month or so. The bandages were stretched across my belly and secured with tape. Let me fill you in on some information about tape that you may not be aware of. There seems to be two choices in medical tape. You can either have tape that holds the bandages on by adhering with super strength and winds up peeling off sections of your skin when you remove it. Or you can have tape that is gentle on the epidermis, but often falls off while you're sleeping, or walking, or sitting, or breathing. The last time I was on chemo, I lost some of my body hair. Not all of it, and not uniformly, but still there was some thinning. One of the places that saw a little less foliage was on my belly. Today I visited my surgeon and he said the wounds were healing well. I no longer need to have a nurse change the bandages, I can do it myself. I also don't need the bandaging to be as expansive, stretching two bandages across my gut and taping them down, I can go with simple 4x4s over the two remaining sites.
So how does this all tie together? Well, since you've decided to take the long road with me, I'll bring it all home now. When my belly hair was sparse, and the bandages wrapped around to my sides, the tape wasn't that difficult to adhere or remove. But now the hair has filled back in, and it's decided to sprout thickest right around the sites of the wounds. In a proactive attempt to mitigate the pain involved with bandage removal I'm going to shave. Nobody tells you this when you first get cancer. The doctors don't tell you. The support groups don't tell you. The books don't tell you. I'm going to put together a little class on all the stupid stuff people have to go through with cancer. Dave can help teach.
Oh, and on another good note, I'm going to Amsterdam on Friday!!!! One last big bash before the new round of chemo. That's life baby.
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