My life In a Bag....

    "I’m going to lose my hair?!?!" Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer? 

   So there I was, barely eighteen years of age checking in at Johns Hopkins University Hospital for my colonoscopy. I had just walked the stage no more than a month ago to receive my high school diploma, now I’m lying on my side as nurses prepped me for my colonoscopy. 

  I don’t remember being nervous as my grandparents and I waited for the results, as the whole experience felt surreal; I mean, here I am waiting on the results of a colonoscopy at an hour no teenager should be awake, while all my friends were laying peacefully in their beds sleeping off a summer’s night of being a "normal" teenager, but I digress. It seemed like a lifetime before we received the results and as fate would have it, not only did I have polyps, but so many in fact that my colon was deemed unsalvageable, and in turn I would need a total colectomy. Little time was wasted as my surgery was scheduled for September 4th, 1996 at the Mayo Clinic in Rochester, Minnesota, by one Dr. Roger Dozois. The same surgeon who performed my uncle’s colectomy years earlier. 

   The summer flew by as they usually do, and the next thing I know I’m on a plane with my grandparents and uncle flying from my hometown of Washington, D.C  to Rochester, Minnesota. We arrived two days prior to my surgery so I would be able to meet my surgeon, get marked for my temporary ileostomy as well as complete all the necessary paper work. Other than getting marked for my temporary ileostomy those two days prior to surgery were a blur,  all I really remember is the night before surgery. After I was checked into my room the "real" preparation began. I was fed pills the size of quarters, while given enema after enema to clean out my system. Most of the night was spent in the bathroom, as my nurse was very liberal with the dispensing of the enemas, and if I wasn’t on the toilet having my life sucked out of me, I was vomiting up the lining of my digestive tract. After hours of being fed pills that could choke a horse and given enough enemas to clean out a cow, I was finally able to get some sleep before my big day. 

   The morning came with a knock at the door, and a nurse who greeted me with a valium to "relax" me before surgery. Moments later I was on a gurney destined for a surgery that I wasn’t prepared for. More than nervous and hardly "relaxed" my heart rate increased with each wheel rotation of the gurney which was scheduled for a nonstop trip to the O.R. I had reached my final destination; it was white, bright, cold and unfamiliar. I was moved from my gurney to the operating table, and by this time I was all strapped in, having an oxygen mask placed over my nose and mouth. "We’re going to take real good care of you Kristofer." said the anesthesiologist, "now take a few deep breaths for me and count back from one-hundred." "One hundred”….and that’s all she wrote. 

   When I came to, I woke  to a packed hospital room, with my grandparents to the right of me, and my surgeon at the foot of my bed. My surgeon wasn’t alone, he was flanked with an entourage of white coats. I was confused enough without all these unknowns standing in my room, but before I had time to question my surgeon walked to the side of my bed. "Kris, we found a tumor in your rectum during the surgery." Wait! What? My mind was racing, trying to grasp the situation, and that’s when my vanity came into play. "Gramps, I’m going to lose all my hair?!?!" So after finding out I had cancer, my biggest concern was my hair, talk about priorities. Being the most caring, compassionate, empathetic and understanding man I have ever known I shouldn’t have been surprised by his response, "Kris, don’t worry, we’ll get you the best wig money can buy." Now take a moment to realize the magnitude of my grandfather’s response. My grandfather just found out that I had cancer, and in a matter of moments he was able to process the severity of my situation, listen to my ridiculous concern, and without missing a beat console me with what I needed to hear. Ridiculous or not, it was nothing short of amazing. 

   My surgeon informed me that I had stage III colorectal cancer, and with that I was given a forty percent survival rate. Math was never my best subject, but it was easy enough to figure out that the odds weren’t in my favor......I was only eighteen! With the very next breath my surgeon leaned down next to me and said, "Kris, this is game seven, I need you to fight." I was at a total loss, I didn’t know what to say, what to do, or how to feel, I was just so confused, so I did what I do best, pretend. I pretended that I was okay, and that my illness wasn’t that serious. My psyche was just too fragile to handle the reality of the situation. 

   After several months of being home finishing up my treatment, it was time for me to go back to the Mayo Clinic for follow up testing. It would be a two day trip for my grandparents and l. The first day was spent being poked, prodded, scanned and stuck, nothing short of the usual, with instructions to follow up the next day. With my grandparents by my side, I sat silently staring at the floor waiting for the doctor to  send me home with a clean bill of health. My head shot up as I heard a knock at the door and in walked the doctor with my results. "Kris, the CT showed spots on your liver, and I would like to do a biopsy first thing in the morning." Confused, I looked at him and said, "Doc, I can’t, our flight leaves in the morning," then shot out of my seat found an empty room down the hall and proceeded to cry every single tear I had. Eventually I wiped the tears from my face, gathered myself the best I could and made my way back to the doctor’s office. Once back in the room I pleaded with my grandparents as well as the doctor to let me go home as planned and have the biopsy done then. I was scared, I wanted out and home was my only salvation. 

   Once I was home there was a window of a few days before I was able to see my oncologist, and during that time I felt nothing. I couldn’t laugh, couldn’t cry and I couldn’t feel. I was completely numb, just a  dead man walking. Nothing would’ve prepared me for what I would find out the day of my appointment. When my oncologist took my grandparents and I back to his office, he pulled up my scan. “Those spots you see are quite normal, that’s just how the liver reads when scanned.” I didn’t know what to say. I was relieved, yet angry, I just spent the last few days walking around like a zombie, waiting on what was sure to be my imminent death. I left my oncologist’s office shaking my head, it’s not like I learned  about the severity of these “so-called spots,” by some “quack” operating out of his garage! This was the Mayo Clinic, "thee" place to go for cancer treatment. To this day I’m still shaking my head.  

   "Just when I thought I was out, they pull me back in." It was once again time to go back to the Mayo Clinic for another follow up visit, and wouldn’t you know it, my CT results didn’t come back clean. I was told that I had a mass of what looks to be a tumor wrapped around my left ureter, which I was a little hesitant to believe considering the outcome of my last visit. Unfortunately for me there were no mistakes being made this time. I was shook to my core. I didn’t know if I  was coming or going, or when, if ever this rollercoaster ride would end. The results came back from the biopsy, and thankfully the tumor was benign, but I wouldn’t get off that easy. While benign, it still was a tumor, a desmoid tumor, which were common in patients with F.A.P.  Due to the location I was told the desmoid was inoperable From there I was put on a trial medication which had some success shrinking desmoid tumors, along with a referral to a urologist, as the tumor was causing me bladder and kidney pain. Upon meeting with the urologist, the doctor explained I would need to have a stent placed which would keep the kidney dilated. After a few years of urine tests, stent placements and replacements, my kidney showed it was able to function without the stent. Oh, and the desmoid tumor? My last MRI showed no evidence of any mass around my ureter. 

   Fast forward to the fall of ’97, I was home recovering from my j-pouch surgery, I was feeling better, looking better and best of all living without an ileostomy, but I was about to receive the best news yet. While out running errands one day my phone rang and it was my grandfather. "Kris, I just got off the phone with your doctor, and all of your latest tests have come back clean, you have no cancer in your body." I stopped what I was doing and screamed “YES!”  at the top of my lungs! I was one year cancer free, and fully understood the significance of that marker.   

   One year turned into two, then five and here I sit today, almost twenty years later, free of cancer and lucky to be able to call myself a survivor. With all that being said, It would be remiss of me if I said that’s where my cancer story ended. 

   The effects of cancer and its treatment will be with me for life as I still live with bladder and kidney pain due to what my urologist calls "radiation cystitis." Also a few years after my j-pouch surgery I developed anal stenosis due to the radiation treatment. I was dilated a few times under anesthesia, and even had a surgery to try and rectify the situation, (no pun intended) but to no avail. The surgery left me not being able to control my bowels, and having to wear a pad during the day and diaper at night. I let the aftermath of cancer treatment rule my life, living this way for ten years. I was painting myself into a corner. My  shame and disdain for the life I was leading grew larger with each passing day, something had to change. On August 5, 2013 I decided to have surgery to receive a permanent ileostomy, and not only is it not nearly as bad as I remembered, my ostomy has given me my life back. Chalk my new found acceptance up to age, maturity or simply just knowing things could always be worse. 

   Cancer did a number on both my mind and body, but through it all I am still here. I’ve said it before, and I’ll say it again, it’s not our afflictions that define us, but how we choose to deal with them.    

A Letter To My Grandfather

Gramps,

      I miss you, I need you, and I’m scared to death, this “life” thing is a whole lot harder than I thought. Since September I have dropped out of school, walked out on a job, and tried to kill myself but failed miserably, I’ll expound more on that later. I thought I was ready for school, I was excited, or at least I was doing a good job of pretending to be. I was telling everybody of all these grandiose plans I had for myself, how I was going to do, “a,” “b” and “c” and become successful in so many ways, and then….kaput.  All it took was one class for me to quit, and although you didn’t raise a quitter that’s exactly what I’ve become.  I remember sitting in class doing my best to absorb everything that was being taught, then going home that night and reading the assigned chapter three times, and not retaining any of it. I did that for the first week; I listened intently and studied hard.  Still, no matter how much I studied, I was still absent from class discussions, not physically, but mentally. My frustration turned to anger, which turned to self-pity, and I did what I do best, tucked my tail between my legs and quit.

     After dropping out of school my depression worsened and the idea of taking my own life started to sound like a viable alternative.  I mean let’s take a step back and look at my life; I’m thirty-seven, I don’t have a skill or a trade, I lack motivation and have not a clue what I want to do with my life.  Oh, and for arguments sake, even if I was to somehow muster the motivation and drive I'm pretty sure it wouldn't do much good anyway.  See, my memory and wit have taken a back seat to fog and stupidity. I forget the names of random objects at times, and my word retrieval is horrible, and those are just couple of examples.  Case and point(s) at one of my recent sessions with my shrink, I picked up a coaster to fiddle with while we were talking, but at the time I couldn’t for the life of me remember that what I was holding was called a “coaster,” the best I could come up with was, “drink holder thing.” It gets better, and by better I mean worse.  I picked up a friend at the airport over the summer, and it took a good forty five minutes to an hour for me to remember where I parked my car. I never considered myself “smart”, but I always had the memory of an elephant, and now I feel as though I’m losing my faculties. Gramps, I’m so, so very scared, but I digress.

     I don’t want to leave out this little gem; The other day my neighbor asked if I worked with computers, not because I ooze intelligence, but because he has never seen me leave my house and assumed I worked remotely, which brings me to one of the biggest reasons why I don’t want to live. Gramps, you are the only reason why I am able to pay my bills, eat, etc.  Without your money I would be living on the street.  I am ungrateful, unappreciative, and hate the person I see in the mirror; frankly I am doing this world a disservice by living.  I wish I had the “balls,” (excuse my language) to go through with taking my life that Thursday afternoon, then at least I wouldn’t be wasting your money.  Actually the act of suicide would work out two fold, as I wouldn’t be the burden I am to Aunt Becky. I can only imagine what she thinks of me, as she has gone from being an aunt to a thirty something, to the mother of a helpless and hapless child. To take it a step further, I took it upon myself to research funeral costs, and considering that we already have a family plot, my funeral would cost no more than a few months ‘rent. And who knows, maybe the leasing office will take pity on our family and not keep my, I mean your security deposit.  At some point you just have to “cut bait."

     Lastly, I just want tell you how sorry I am. You gave me the world, and I pissed all over it. The only thing I hope is that what I have done with my life in no way reflects my love for you.  I love you so much, you are everything to me. Biologically you are my grandfather, but for all intents and purposes you are my father.  You are also my best friend, as well as my idol.  You are everything I wish I could be, you always loved me unconditionally, and don’t you ever think that for one moment I didn’t appreciate that.  I’m not sure it’s humanly possible to love someone any more than I love you.  Hopefully I won’t get to heaven before you; because I’m not sure Peter would let me in.

                                                             Love you so very much,

                                                          

                                                                                        Kris.

 

 

 

 

 

 

 

                                                                            

Wake Me Up When September Ends

     In the days that followed my mind seemed more cluttered than it was on that Thursday afternoon.  Now, not only was I depressed, but extremely ashamed of my actions. I couldn’t believe I had taken something that at one point was no more than a thought and made it into an “almost.” I didn’t know whether I should tell anyone. If I did, who would I tell?  A lot of people seem to think I’m this brave and inspirational soul, which I never agreed with, but with that being said I never wanted anyone to know how weak and distraught I was either. I was worried what everyone would think of me, and that I would forever be labeled as “crazy.” It wouldn’t be long before I had my first “scare,”of being confronted with the question, “what happened to your wrist?” As my stomach pain came back into play.

     The following Sunday afternoon I found myself lying on the couch and in such extreme stomach pain that I called the on call GI, and I was mentally preparing myself for a trip to the ER.  Sprawled out on the couch waiting for the doctor to call (which never happened) my worries became less about my pain as I looked over at the scars on my wrist. I know the protocol for ER visits, and one of the first things they were going to do is take my blood, and there would be no hiding what I had done to my wrist.  Immediately my mind goes into overdrive trying to come up with answers to the inevitable.  First thought  that came to mind: I would just laugh it off, make the doctors/nurses feel silly for even assuming something so asinine, but I couldn’t go too overboard with my reaction as I didn’t want it come off rehearsed, maybe that wasn’t best idea.  My next thought was to remind them that I was left handed, and the scars were on my left wrist, and if I was to try and slit my wrist wouldn’t  it be my right? Then I thought, “Wait, they’re going to know somethings up if I was to come up with some elaborate story about why I would, or wouldn’t slit one wrist versus the other due to being left handed.” Fortunately my pain started to dissipate which in turn lessened the concern for having a plausible story.

     So inadvertently I was able to dodge that “bullet,” but how long would I be able to? I knew that due to my reclusive lifestyle by the next time I saw anyone chances are my wrist would be healed, but was I hurting myself even more by not saying anything?  Even though I don’t agree with the labels of “inspirational,” and “brave” that’s all I had, and I didn’t want anyone to know “the real me.” I was afraid of how the people closest to me would feel; I could only imagine what others would think.  Why am I so consumed with how I’m viewed? Who am I? What have I become?!?!

A Thursday in September

     I cleaned up my apartment with the thought in mind that somehow I was helping whoever was unfortunate enough to find me.  With a clean apartment and a cluttered mind, I dug through my closet and pulled out the buoy knife I had purchased when I was thirteen with my mother’s credit card.  I pulled the knife out of its sheath and it was bigger than I had remembered. I then ran the knife up my arm and it shaved the hair clean off.  This was it, It was so surreal, but I was about to take my own life.

 

     I had been living in pain for entirely too long and it was starting to take its toll. Whether it was bladder or pancreatic pain, every day I was suffering and my quality of life was starting to come into question.  As if chronic pain wasn’t enough my blood work comes back amiss. Turns out my pancreas isn’t producing enough insulin, so I’m now being monitored for yet another disease.

 

     The connection between body and mind is definitely strong because my depression was getting worse.  Inexplicable sadness and crying in the shower have become a part of my new daily routine.  I’m pushing people away because I can no longer tell them “I’m fine." The truth is I’m going to lose it; it’s all just a matter of time.

 

     As days go by my hope for tomorrow starts to wither and fade.  When I hit my knees at night I’m praying to not to wake.  But sure as the sun rises my eyes open and my prayers go unanswered, my sadness turns into anger and the tone of my prayers start to change. “God, people are dying everyday who are fighting for their lives, here I kneel before you, begging you to let me die.”

 

     So, here I am knife in hand ready to end it all. I’ve never made it this far. I’m more than scared and unsure of what to do. I remember seeing in the movies people slitting their wrists in the bathtubs, so I get in fully clothed and assume the position.  My hands start to tremble as my eyes well up with tears, I hold the blade to my wrist while barely applying any pressure, and then I look down and notice that I’ve already broken the skin.

 

     I don’t know why it took this long, but with seeing the blood, the reality of the situation sets in.  Light sobs and tears turn into full blown crying and weeping as this could possibly be it.  Then I start to wonder if what they say is true, that people who take their own lives spend eternity in hell.  With the fear of being cast into hell; I say the Lord’s Prayer as I push the knife deeper into my wrist, hoping that I will be looked upon with pity, and be reunited with my loved ones in Heaven.

 

     The pain is too much I drop the knife, and scream out, “what is wrong with me!”  I leave the bathroom, crawl into bed and have a complete breakdown.  I grab my phone call my shrink, he answers, “Kris what’s going on?” To which I reply, “Doc, I don’t know, but somethings really wrong with me, I just spent the last hour in my bathtub with a Fuckin knife at my wrist.”

Kancer For Kris

      "I’m going to lose my hair?!?!" Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?

     So there I was, barely eighteen years of age checking in at Johns Hopkins University Hospital for my colonoscopy. I had just walked the stage no more than a month ago to receive my high school diploma, now I’m lying on my side as nurses prepped me for my colonoscopy. I don’t remember being nervous as my grandparents and I waited for the results, as the whole experience felt surreal; I mean here I am waiting on the results of a colonoscopy at an hour no teenager should be awake, while all my friends were laying peacefully in their beds sleeping off a summer’s night of being a "normal" teenager, but I digress. It seemed like a lifetime before we received the results, and as fate would have it, not only did I have polyps, but so many in fact, that my colon was deemed unsalvageable, and in turn I would need a total colectomy. Little time was wasted as my surgery was scheduled for September 4, 1996 at the Mayo Clinic in Rochester, Minnesota, by one Dr. Roger Dozois, the same surgeon who performed my uncle’s colectomy many years earlier.

     The summer flew by as they usually do, and the next thing I know I’m on a plane with my grandparents and uncle, flying from my hometown of Washington, DC to Rochester, Minnesota. We arrived two days prior to my surgery so I would be able to meet my surgeon, get marked for my temporary ileostomy, and complete the necessary paper work. Other than getting marked for my temporary ileostomy those two days prior to surgery were pretty much a blur, as the next thing that I remember is the night before surgery. After I was checked into my room the "real" preparation began. I was fed pills the size of quarters, while given enema after enema to clean out my system. Most of the night was spent in the bathroom, as my nurse was very liberal with the dispensing of the enemas, and if I wasn’t on the toilet having my life sucked out of me, I was vomiting up the lining of my digestive tract. After hours of being fed pills that could choke a horse and given enough enemas to clean out a cow, I was finally able to get some sleep before my big day.

     The morning came with a knock at the door, and a nurse who greeted me with a valium to "relax" me before surgery. Moments later I was on a gurney destined for a surgery that I wasn’t prepared for. More than nervous and hardly "relaxed" my heart rate increased with each wheel rotation of the gurney, scheduled for a nonstop trip to the O.R. I had reached my final destination; it was white, bright, cold and unfamiliar. I was moved from my gurney to the operating table, and by this time I was all strapped in while having an oxygen mask was placed over my nose and mouth. "We’re going to take real good care of you Kristofer." said the anesthesiologist, "now take a few deep breaths for me and count back from one-hundred." "One-hundred….and that’s all she wrote, as my next memory was waking up in my hospital bed.

     When I came to, I awoke to a packed hospital room, with my grandparents to the right of me, and my surgeon at the foot of my bed. My surgeon wasn’t alone as he was flanked with an entourage of white coats. I was confused enough without all these unknowns standing in my room, and before I had time to question, my surgeon walked to the side of my bed. "Kris, we found a tumor in your rectum during the surgery." Wait! What? My mind was racing, trying to grasp the situation, and that’s when my vanity came into play. "Gramps, I’m going to lose all my hair?!?!" So after finding out I had cancer, my biggest concern was my hair, talk about priorities. Being the most caring, compassionate, empathetic and understanding man I have ever known I shouldn’t have been surprised by his response, "Kris, don’t worry, we’ll get you the best wig money can buy." Now take a moment to realize the magnitude of my grandfather’s response. My grandfather just found out that I had cancer, and in a matter of moments he was able to process the severity of my situation, listen to my ridiculous concern, and without missing a beat, console me with what I needed to hear. Ridiculous or not, it was nothing short of amazing.

     My surgeon informed me that I had stage III colorectal cancer, and with that I was given a forty percent survival rate. Listen, I am no math whiz, but if I had only a forty percent survival rate, that means I had a mortality rate of sixty percent, I was only eighteen! With the very next breath my surgeon leaned down next to me and said, "Kris, this is game seven, I need you to fight." I was at a total loss, I didn’t know what to say, what to do, or how to feel, I was just so confused, so I did what I do best, pretend. I pretended that I was okay, and that my illness wasn’t that serious as that was the best way I knew how to deal. My psyche was just too fragile to handle the reality of the situation.

     After a several months of being home, and finishing up my chemo treatment, it was time for me to go back to the Mayo Clinic for follow up testing. It would be a two day trip for my grandparents and me. The first day was spent being poked, prodded, scanned and stuck, nothing short of the usual, with instructions to follow up the next day. With my grandparents by my side, I sat silently staring at the floor waiting for the doctor to come in, and send me home with a clean bill of health. My head shot up as I heard a knock at the door, and in walked the doctor with my results. "Kris, the CT showed spots on your liver, and I would like to do a biopsy first thing in the morning." Confused, I looked at him and said, "Doc, I can’t, our flight leaves in the morning," then shot out my seat found an empty room down the hall and preceded cry every tear my ducts could store. Eventually I wiped the tears from my face, gathered myself the best I could, and made my way back to the doctor’s office. Once back in the room I pleaded with my grandparents as well as the doctor to let me go home as planned, and promised that I would have the biopsy done then. I was scared, I wanted out and home was my only salvation.

     Once I was home there was a window of a few days before I was able to see my oncologist, and during that time I felt nothing. I couldn’t laugh, couldn’t cry and I couldn’t feel. I was completely numb, and as far I was concerned I was a dead man walking. Nothing would’ve prepared me for what I would find out the day of my appointment. When my oncologist took my grandparents and I back to his office, he had my CT results next to those of another patient. "Kris, you see those spots" he said, "They’re supposed to be there," and pointed to the other CT scan who’s was a patient with a "healthy" liver. "That’s just the way the liver looks when scanned." I didn’t know what to say; I was relieved, yet angry. I just spent the last few days walking around like a zombie, waiting what on what I was sure to be my imminent death. I left my oncologist’s office shaking my head, it’s not like I was told I had "spots" on my liver at some random clinic on the side of the highway, this was the Mayo Clinic, "thee" place to go for cancer treatment. Goes to show, never judge a book by its cover.

     "Just when I thought I was out, they pull me back in." It was once again time to go back to the Mayo Clinic for another follow up visit, and wouldn’t you know it, my CT results didn’t come back clean. I was told that I had a mass of what looks to be a tumor wrapped around my left ureter, which I was a little hesitant to believe considering what I was told during my last visit. Unfortunately for me there were no mistakes being made this time. I was shook to my core, didn’t know whether I was coming or going, or when, if ever this rollercoaster ride would end. The results came back from the biopsy, and thankfully the tumor was benign, but I wouldn’t get off that easy. The tumor I had was inoperable because of its location; it was also a "desmoid" tumor, common in patients with F.A.P. I was then put on a trial medication which I was told had some success with shrinking desmoid tumors, along with a referral to an urologist as the tumor was causing me bladder and kidney pain. Upon meeting with the urologist, I was informed that I would need to have a stent placed in my kidney to keep it dilated. After a few years of urine tests, sent placement, and replacements, my kidney showed that it was able to function without the stent. Oh, and the desmoid tumor? My last MRI showed no evidence of any mass around my ureter.

     Fast forward to the fall of ’97, I was home recovering from my j-pouch surgery, I was feeling better, looking better and best of all living without an ileostomy, but I was about to receive the best news yet. While at the mall hanging out with my best friend my phone rang and it was my grandfather. "Kris, I just got off the phone with your doctor, and all of your latest tests have come back clean, you have no cancer in your body." I ran out of the mall screaming "yes "at the top of my lungs, I was one year cancer free and I knew exactly how significant that was.

     One year turned into two years, then five and here I sit today, almost twenty years later, free of cancer and lucky to be able to call myself a survivor. With all that being said I would be remiss to say that’s where my cancer story ended. The effects of cancer and its treatment will be with me for life as I still live with bladder and kidney pain due to what my urologist calls "radiation cystitis." Also a few years after my j-pouch surgery I developed anal stenosis due to the radiation treatment. I was dilated a few times under anesthesia, and even had a surgery to try and rectify the situation, (no pun intended) but to no avail. The surgery left me not being able to control my bowels, and having to where a pad during the day and diaper at night. I lived this was for ten years, painting myself into a corner as my shame grew larger with each passing day. A decision needed to be made. On August 5, 2013 I decided to have surgery to receive a permanent ileostomy, and not only is it not nearly as bad as I remembered, my ostomy has given me my life back. Chalk my new found acceptance up to age, maturity or simply just knowing things could always be worse.

     Cancer did a number on both my mind and body, but through it all I am still here. I’ve said it before, and I’ll say it again, it’s not our afflictions that define us, but how we choose to deal with them.    

The Whipple Effect

  As I have stated in previous posts, I have a hereditary disease called Familial Adenomatous Polyposis. This disease is the reason for all of my G.I issues, including my colorectal cancer diagnosis. This past November, when I found myself in the I.C.U, it was due to a complication from a procedure called an E.R.C.P, that I had because I have F.A.P.  I learned two very important things during my stay in the I.C.U.  First, due the excessive amount of polyps I have in my intestinal tract, it was unknown exactly how many more "E.R.C.P's" I would need to remove them all, though one doctor guessed "twelve." Second, there was an alternative, instead of having an E.R.C.P every three months, I could have a procedure called, "The Whipple," where, all of my polyps would be removed during one surgical procedure.  So, there are my choices, either "twelve" E.R.C.P procedures, or one surgery to remove all of my polyps at once, seems to be an easy choice, that is until I delved into what exactly the "Whipple Procedure" would involve. 

  "The Whipple" procedure is a complex surgery that is known mostly for its connection with patients who have pancreatic cancer, but is also a viable alternative for F.A.P patients who have excessive amounts of polyps. In my particular case, my surgery would entail having six inches of my duodenum removed, as well as my gallbladder, and 15% of my pancreas, and if all goes as planned I would have my drainage tubes pulled after three days, spend a total of six to eight days in the hospital, and be discharged with instructions of three months home rest. If I have any complications, specifically the most common, called a "fistula" things would become more complicated. I would still be discharged from the hospital after six to eight days, but would be sent home with a home care nurse, as I would still have the drainage tubes, as well as a T.P.N port where I would receive my nutrients since I wouldn't be able to eat, from anywhere between three to six weeks, or until I "drained" all the excess fluids. So, in a nutshell my choices are having multiple "E.R.C.P's," and possibly end up back in the I.C.U, or my fourth "major" abdominal surgery.

  After a lot of thought, and discussions with my primary, the surgeon who performed my last surgery, appointments with multiple G.I doctors, as well as the Executive Director of Georgetown Transplant Institute Chief, Liver Transplantation Professor of Surgery, I chose "The Whipple."  This is possibly the biggest decision I have ever made, and I am 100% confident in the people who helped me make this decision, as well as the surgeon who will be performing the surgery, but because this is the biggest decision I have ever made, this is also the most anxious, nervous, scared, and afraid I have ever been prior to a surgery. I know that I shouldn't question myself, especially since I made this decision with the help of great doctors whom I trust with my life, and all of whom hold all the credentials a patient could ask for, still I am worried about possible complications. I have grown jaded, I feel as if I am prone to any complication that is possible following a surgery; when I had my end ileostomy surgery in August, I was told I would be in the hospital two to four days, and due to complications I spent two weeks at Washington Hospital Center. On October 29th, I had an E.R.C.P, and due to complications, less than a week later I found myself in the I.C.U, diagnosed with "acute internal bleeding." So, as far as I'm concerned, my apprehension is more than justified.

  Once again I find myself  staring at my computer writing yet another blog post about an impending surgery.  The feelings I am having while writing this are eerily similar to how I felt six months ago, when I wrote my very first blog entry. I remember writing my first blog, and saying, "I was scared, make that really scared," and looking back I'm afraid I used the word "scared" too loosely, because now I am really scared, make that frightened! I've been walking around this last week feeling as If I could vomit at any moment with all this nervous energy running through me.  All I can think of is this surgery, and the more I try not to think about it, the more I do. My anxiety level rises a little more with each passing day, which is doing wonders for my OCD, as I am washing my hands to the bone. I have lost all self control, I feel as if I was just diagnosed with panic disorder, and OCD yesterday.  Regressed is what I have done, as I once viewed myself, as a strong person, both mind, and body, I have now turned back to the scared little boy, who at eighteen clung to his grandparents and wouldn't let go, until they told him "everything was going to be okay." Seventeen years later, I feel as if my life has come full circle, the same disease which allows me to say, "I was diagnosed with cancer at eighteen," is giving me the opportunity to call myself a "Whipple Warrior."


  Bottom Line: Tomorrow, January 16th, 8:00 A.M, I will be going under the knife once again, and hopefully for the last time. 


  Lastly: We all have our "crosses to bear," all which "weigh" the same, only us as individuals know exactly how hard it is to carry these "crosses" on a daily basis.  I wonder what "cross" it is that you carry, what are your daily struggles and how do you deal with them?  

  Let me know by e-mailing me, or if you feel comfortable leave a comment on this page.

 kristoferadam78@gmail.com

Extended Forcast: Mostly Dry, With Chance of Sprinkles

 Three months ago I wrote a blog titled, "Forecast: After A Week Of Precipitation, Outlook Unclear."  Where I briefly discussed my previous bladder issues, only to use the rest of the blog post as a platform to complain about how I had been wetting the bed.  In the three months that have passed since that post, my bladder situation as described has made a 180 degree turn.  Before I was dealing with urine incontinence, and frequency, where now I am now dealing with urine hesitancy, a weak stream, as well as still dealing with pains in my bladder, flank, and kidney (left). A big change that I have made since the last post, is one concerning my doctors, as I now have a new urologist; the reason for that being that I didn't feel that he (my old urologist) was being as proactive with my situation as he should.

  As I mentioned my symptoms have changed pretty dramatically when it comes to what I was, and what I am dealing with, concerning my bladder. Now emptying my bladder takes the concentration of a Buddhist monk, as I have to stand in front of the toilet with my eyes closed in complete silence so I am not distracted from the task at hand. There are times where I can stand at the toilet for up to minute, only to produce a stream that sheds the same velocity as water being wrung out of a washcloth, as well as producing about the same amount.  I swear that while I'm standing in front of the toilet trying to piss,  I can hear Obi-Wan Kenobi telling me, "use the force." In all seriousness, this whole situation has become very frustrating, as I have gone from urinating up to twenty times a day, and wetting my bed, to needing a fuckin' tutor in the bathroom to teach me how to piss!

  With my bladder problems continuing, and not seeming to get any better, as well as a urologist who was more reactive, then proactive in my treatment, I decided to make a change in doctors. I was given a referral for a new urologist by the surgeon who performed my "end ileostomy," and considering the amount of trust I have in him, I quickly made the initial appointment.  I have now seen my "new" urologist three times, have had a bladder scan, and a ultra sound on my bladder and kidneys, with the results of both tests showing normal functioning of both my bladder and kidneys.  So, with the tests all coming back clean, why am in pain? The answer: nerve damage.

  Per my urologist, after he had looked over all my test results, both past and present, all my pain is due to the radiation I received following my colorectal cancer diagnosis, and my three "major" abdominal surgeries.  Turns out that radiation does some harm as well as good, and the surgeries that I have had in the past have created a significant amount of scar tissue, thus creating nerve damage. So, when my penis, testicles, bladder, or kidney hurt, there is no "real" pain, just my brain sending false signals to those areas of the body.  The nerve damage is also accountable for the feeling of having to urinate, as well as the urine hesitancy.  The positive I can take from this is that now I have an answer to "why?," the negative is there is not much that my urologist can do.  I was told to "void" every two hours, as well as to set my alarm to wake me up in the middle of the night to use the bathroom, and with that advice, along with biannual appointments set for "check-ups,"  I was told to see a pain management doctor, as there is nothing else that can be done on his end.

  Anyone who knows me well, knows that I would rather just deal with the pain than take any pain medication.  Now, don't me wrong, the reason why I would rather deal with pain, than take any pain medication has nothing to do with how tough I am, or think I am, or any "beef" I have with western medicine, the reason I don't take, or like to take pain medication has to do 100% with how neurotic I am, especially when it comes to taking "drugs."  See, I have this irrational fear of getting "high," and/or becoming addicted to the medicine I am prescribed, and in my head the rest of my life would consist of me "doctor shopping," and becoming a regular on the show "Intervention."  So, if I was given the choices of pain or addiction, I would choose the former.  With that being said, I am in a good amount of pain/discomfort, not to mention that I would like to get over my neuroticism, so I am going to do my best to have an open mind towards pain management.  

  Bottom Line:  I have chronic pain/discomfort, and as I see it there are three options to dealing with it. First option: I can accept my situation for what it is, move forward and not let this pain dictate the rest of my life. Second option: I can choose not to accept it, feel sorry for myself, curse my situation, become even more depressed, and not really live life, and just go through the motions. Third option: I could say fuck it, and kill myself, because that's how unfair I feel life is.  Well, the third option is not a choice, so that leaves me with acceptance or feeling sorry for myself.  The correct answer is clearly acceptance, but its also the most difficult when dealing with mind numbing discomfort on a daily basis.  I know how I want to live, I just don't know if I have the "drive" to accept it and move on, as I see myself more as more of a" going through the motions" kinda guy. Hopefully I will accept the situation at hand and move on with a smile, after all I'm only 35, and I have yet to turn my dreams into my reality.

  Lastly: I don't know if any of you have to deal with chronic pain of any sort, or just feel as if life has dealt you too hard of a hand to be able to live the life you would like to lead, but I would like to know how you deal with life's ills.  I've said it before, I don't know if I can help you, but what I do I know is that you can help me.  Let me know how you deal by emailing me kristoferadam78@gmail.com