You are on page 1of 10

Debra's Diary Vancouver, British Columbia email: dodge@shaw.

ca

August, 2001 Sometime about mid August, 2001, I went to bed and got up the next day unable to have a bowel movement. Just like that. Boom. "Bowel movement is a polite term Ive always laughed at. Call it taking a dump, having a crap, pooing, shitting, whatever. Mid August and the weeks that followed gave me an appreciation for the term movement because very little was. Moving, that is. Oh, I could go a bit but after two weeks I couldnt kid myself any more that the bloody mucous, noxious smells and miserly pencil-thin stools were shall we say, an infected hemorroid. Thats what I really thought it was. An infected something or other because nobody in my family had cancer, and that sort of thing doesnt happen to ME. Right? I booked an appointment with my doc and thats when the fun began to start. The digital rectal exam hurt like hell and she booked me with the first available specialist in the clinic, a Dr. Stoller, for a sigmoidoscopy. 10 days later I presented myself to Dr. S. I wasnt particularily concerned because cancer doesnt happen to ME, right? I regarded the procedure with interest and curiosity, feelings that began to evaporate when I saw the table where the test was to take place. An unlovely shade of orange with two silver handles on the sides for the patient to grip, I noted, with growing unease. They wasted no time, Stoller and the nurse, getting me into position (undignified) and proceeding. What happened was brutal and swift. I liken the pain to that of a small rodent inside the bowel attempting to chew its way out and I got off the table, shaken and not sure if I should be angry or not that they had done this without painkillers of any sort. Next I was lying on another table, exposed and trembling, while Stoller felt my stomach, making a kind joke to calm me down. He told me to get dressed and I did so, regaining my composure and wondering what glum regime they would give me to cure my infected whatever down there. I sat and waited for him to return, my last life moments, whole and without fear, in a doctors chair on 7th Avenue in Vancouver, BC. It was a mild day, sunny even. Dr. Stoller came in and dropped my folder on his desk and told me he wasnt going to play games with me. I had a tumor that required surgery and it needed to be done soon. I would probably need chemo and radiation after that. The biopsy so painfully taken minutes earlier had been sent on an urgent basis to pathology and he wanted to see me Friday and I should bring a friend. I knew then, although I didnt exactly believe what was happening. I recall looking at his foot he had a deformity of some sort and I wondered, as he was telling me I would need a colostomy, what sort of troubles hed had with that foot in his life. He told me people with colostomies did everything, ran marathons, went swimming etc. etc. and the bags were really good now, not like the old days, these now were really modern appliances etc. etc. I hardly heard any of this, all I could hear was BAG, BAG, BAG. Did I have any questions? I struggled to say, repeating what he already had, that we should wait for the pathology before jumping to conclusions and OK, see you Friday. He reached to shake my hand, a nice touch I thought, and I left to walk home. I took the long way home, over Burrard Bridge. Ive always loved to walk; its been my joy and refuge all my life and now I took the long way. What I was doing was trying to decide how to tell Joan, my partner and lover and the rest of it was trying to figure a way out of this. It couldnt happen, surely, something would come along, OK, I had cancer but theyd figure another way to do the surgery, the pathology would be not so bad, another opinion would intrude, and so on and so on. ANYTHING but a colostomy. The cancer was secondary, almost an afterthought compared to the horror of wearing a bag. (I was to read something, months later, in anothers diary about ones personal worst fears in life. One of my three was wearing a bag. Seriously. Id thought of it before and said I simply could not bear it, would refuse to live with such a thing and now, in a cruelly ironic turn of events, what I had feared was indeed going to happen.) This was September 17, 2001, my colostomy/cancer

ground zero. When you get cancer, before the final bad news is delivered, it seems like your spending all your time waiting. Waiting for the next test, the next appointment, the next phone call. I was too distracted to stay at work, told my supervisor what was happening and began to pack up. I work beside a press room and took a last turn around the shop. The presses were ratcheting away and each man was bent to his work and I thought, This is a good way to remember this place. I left my workplace of twenty three years, sad to leave and not knowing when I might be back or if Id be back at all. No one looked up or noticed I was leaving early which was just as well. Im fond of the guys and it would have been too hard. We waited, Joan and I, for two days, waited for a phone call to tell us what time to come in on Friday. No call. By Thursday it was obvious somebody was asleep at the wheel so I called to receive the stunning news that Dr. Stoller was gone for the day, well yes the results were in but no the receptionist couldnt interpret them and had he said anything about the 11 oclock appointment? My senses reeled at hearing this. Wed have sat, hopeful dopes, late into the night, imagining wed be called for an appointment we would have missed. We took our friend Carol next day as an extra set of ears and I waited with her and my lover, feeling bouyed by their presence, confident. BRAVE. I hadnt let go of the notion that something new would have transpired in the last while, the test would be OK, or Stoller would have changed his mind about the need for a colostomy. Id still have to have surgery, chemo and radiation, oh yeah, but not the colostomy. We went in and that was the end of my notions. Id prepared a list of questions and Carol took notes while I rubbed my hands endlessly in nervous tension. Stoller gave us the facts. Malignant. Surgery urgent. Colostomy required. Chemo and radiation. Would I like to meet the surgeon he had selected? Well, sure. It was all like a bad dream by now, a really long bad dream but some part of me still functioned despite being aware of a feeling not unlike falling into a vortex. And what was the surgeons name, I asked, struggling to understand the foreign name, repeating the address twice to make sure we had it correctly. We left (shaking hands again) and I went straight to the nearest washroom to pant and sob in horror. Off to the surgeons!! Stoller had written the address wrong and Joan and I found ourselves, bewildered, in a residential area. No clinics in sight. I was frantic for Id heard stories of incompetent doctors, wrong diagnosis, bungled operations and treatments. Such a simple lapse of attention, an address, for Gods sake and he gets it wrong? Is this how its going to go for me? I was wild with frustration. Joan figured it out Stoller was wrong by ten blocks and we found the office of Dr. Polyakov. Closed for lunch. We returned an hour later to find the office open, and filled with patients waiting to see the man. Patients with appointments whereas we had none. ("Go anytime" says Stoller!) We were becoming grimly resigned to bad communication and settled in for the afternoon or so we thought when suddenly I was summoned. We introduced ourselves at once and Dr. Polyakov asked, "And who is my patient?" in such a kind and engaging manner I was instantly at ease. He asked about my symptoms. He asked to do an exam and I hesitantly got on the table, apprehensive for I knew by then what pain would be involved in any invasive rectal procedure. But his touch was gentle and reassuring, and also confirming of what my previous two doctors had already known: advanced rectal cancer. This lady is going to lose her rectum and wear a bag, permanently. They all knew that at once, the pathology and this last exam were largely a formality that had to be done just to dot all the is. So how do you tell someone she is going to shit out the side of her stomach for the rest of her life? I can scarcely remember, no phrase really stands out. All I remember is his immense kindness and tact and I signed the papers he had already prepared. The date was set for for October 1. He said he would see me next week, dont worry youre going to be all right and Im going to get rid of this for

you. Were going to work together, you and me. And to "Live Life". I never understood that moment until much later, that he knew the following week would be my last, whole in body, and that I should live it. The rest was marking time, meeting nurses and one last doctor, and living life. I did things I always loved to do. I went to a pre-op session and to an ET nurse who showed me a photo of a stoma, and I broke down completely. Id never seen one before and it was a cruel shock. I thought, Jesus Christ, does a persons first look at this have to be so bad? Could you have picked an UGLIER example?" (I learned, later, that what I saw was a GOOD example.) I received the mark on my abdomen that would be the stoma site.That evening I took Joan for a walk by the seawall and gave her the last news. Up to that point we had been in a state of battle preparation, downloading the latest development, barely assimilating that before the next thing had to be processed. Neither of us quite believed it all. But during that walk we came to terms with what was going to happen. I told Joan everything I had heard or seen or had done had been to prepare me for a full colostomy. Nothing short of a miracle was going to stop it and there would be no last-hour pleading or bargaining with Polyakov to spare me, spare something so I would have a chance for reversal. We sat a long time at the NWT point, looking out to sea until, by sweet twist of chance, a group of our pals paddled into view. They had been told what was happening earlier in the week and now drew up, once they recognized me, as if in formation, floating gently on the ocean, looking me in the eye as I went down to the water to meet them. They wished me well and it was a magic moment. Joan and I walked home; the light of evening had never been so beautiful. By Sunday I was ready, in a state of resigned eagerness to have this done, get it over with. Friends and family dropped by or called endlessly to wish me well and luck. I felt like a soldier being sent off to war. Monday we set off, Joan and I, in a businesslike and unteary fashion, for Mt. Saint Josephs hospital. Our loyal and kind friend Liana showed up to sit with us in the pre-op area. I undressed, aware as I was doing so that this was the last time I would take my clothes off a body that up until then I had always been vain about. My flat, unblemished stomach. I tried to grasp the moment, memorize it, and only realize now that it had slipped out of my reach already. My bowels still rumbled from the phospate soda adventure the night before. The anesthetist and then Dr. Polyakov dropped by. All will be well, see you in a few minutes. Then I was being wheeled, gliding up to the doors of OR sooner than I had anticipated. It seemed a large room with lights the size of satellite dishes turned off in the ceiling. I wanted to sit up and examine things, go slowly, this was happening too fast but they were already rigging the anesthetic line. My hand strayed under the sheet wanting to touch my stomach to the last but I gave it up willingly to Dr. Polyakov who laid it flat to be strapped. I lay quietly and calmly, arms spread and tied is if in crucifixion; I gave up my old life in those moments without fighting or anger. I went to sleep. I had had 14 days to say goodbye to my body. I awoke next in pain I felt I could not endure, pain made worse by the shock that everything I had been told prior to surgery was a lie. Everyone had said, No Pain" and suddenly I was awake in a hell I could not have imagined. They would not give me more morphine -- something about my heart - so I just had to take it. Pain has a colour now: yellow. The walls of ICU were yellow. I remained there for 24 hours and was then moved into a private room. The first few days were a morphine-laced fog of visitors, nurses and doctors, some of whom I remembered and some I did not. I wasnt hyper-aware of the stoma and spent my days observing the progress of my care (it was fascinating, early on, to watch my drainage tubes being emptied) I learned the frustrating and painful shuffle up and down the hall. There were no complications and eventually my catheters and IV were removed and I went home on the 10th day.

How to describe coming home with a colostomy? It was a wound, a hideous bandage I could pretend was like the sutures but only until it started to work. It hit home full and hard the first time I had to change my bag. My dear sister Shannon, a nurse, had flown in to help us that first week and she led me through the hateful procedure. I could barely stand up with disbelief at what we were doing. I missed my old body with a sadness I cannot describe. I cried daily, over and over, for weeks. I could not believe this was how it was going to be. For life. I rode my bike on the 25th day after surgery. I started going to the gym again. I said to hell with avoiding crowds and visited with friends, went to movies, drank wine. I eventually stopped creeping down the street and walked with my usual vigor. I learned what supplies to buy and to stop feeling self-concious while buying them. People made a huge fuss over me and I was astonished and grateful, over and over, at their concern and willingness to help out however they could. As I was astonished and grateful that my body, poor scarred and abused thing, could rebound so well. I went to my pre-radiation meeting confident of a short haul. All my tests and surgical pathologies were negative, you see, and cancer had not entered my head as something to be worrying about. I was too busy obsessing about the colostomy. Dr. Hay told me treatment would last almost 6 months. Six months!! I was crushed and broke down in the next oncologists office. Six months, and five weeks of that with a PICC line on top of it. I balked at that, I thought really, this is a bit much to ask me to endure a colostomy AND an infusion pump. But I did my research on the Internet like the pedant I am and gave in. So Ive had one chemo that went well, the second has been delayed due to a low white cell count. I am hugely disappointed and gloomy about this delay. Its January 7, 2002. The earliest I can be finished is May 10. And so what of living with a colostomy, now at three-plus months? Like I said, I got proficient at buying the required supplies. I pester the ostomy companies for free samples. Ive figured out, up to a point, what the stoma is going to do next and have the changing/emptying routine down efficiently. The appliances fit me well and my clothes look good on me, very much like they did before. I am familiar with, but still disgusted by, the sight of the stoma and handling my own waste. The stoma has become less of a hateful enemy and more like an innocent, bungling bystander. Sort of like me. I sleep better most nights and dont spend as much time in the wee hours, staring at the ceiling and wondering how in hell this thing grew so large, unseen and undetected, in so short of space a time. One year. You see, I had a digital rectal exam exactly one year and one day prior to being diagnosed with a low rectal tumor that had almost completely obstructed my bowel. I think a lot about how that was possible and whether or not my GP missed something that day. If she did, I have paid a hideous price for her inattention. Its all a moot point now. Far too late. Im sad. Sad I dont look like I used to, sad thinking of all the things I did before without a second thought. Even sad feeling my that own memory of myself before is starting to fade. People look at me as if I am the same and I suspect they think far less about the colostomy than I do. I also suspect they are wondering about my chances of survival but if they do they keep that to themselves. January 7, 2003 That was a year ago. I resumed the second round of 5 FU plus leucovorin a week late and began continuous infusion and radiation in February. Continuous infusion meant 5 weeks with a PICC line, the insertion of which I viewed with resignation and dread. It involved a thin blue catheter, up the vein in the arm, through some mysterious other portal and into the heart valve. This was connected at the hand end to a computerized pump that delivered the drugs 24/7. I could never take it off and went weekly for a new batch of drugs and a dressing change. Home I went with my new purse and radiation began the next day. Nothing, no sensation that radiation was passing through me, just the noise of the equipment. It became a familiar routine every day: out of your clothes, into the gown,

onto the table, arrange the PICC and the bag, feel the hands of the technicians adjusting your body. I learned early on that bringing baked goods to the staff ensured one an early appointment and grew to like the regulars. On my last day the techs presented me with a diploma, congratulated me, and we all shook hands. That was a nice moment, leaving Station # 4 in the radiation area for the last time. The PICC line was removed the following day and I felt like I could fly, so light and so welcome it was to be free of my tether. I had another delay the following month due to low blood counts and finally finished all treatment May 25. I stood on the sidewalk outside the clinic and looked up at the trees that day. It was like Id never seen a tree before. Overall, chemo wasnt so bad. Radiation got nasty towards the end with burns but the 5 FU and leucovorin were relatively gentle as these things go. I was spared many of the miseries that others, such as those with breast cancer, must endure during treatment. Never lost my hair, never barfed, never suffered extreme fatigue. In June I had a colonoscopy, returning to Mt. St. Josephs, to wait in a gown, on a gurney in the same area I had waited for surgery 9 months earlier. It was profoundly disturbing to do that, to be in that place again, with such eerie similarities. The procedure went well I was high as a kite on whatever theyd given me and chatted up the entire room, while happily watching my own guts on TV. Once it was over, Dr. Polyakov, charming as ever, pronounced the remaining colon pristine and said I could irrigate. "You can do anything you want," he said, another one of his double meanings. One that I understood this time. Irrigation merely a pretty word for enema transformed my quality of life. To be handling ones own stoma in such a fashion was bizarre in the extreme but the effect was immediate and suddenly I was free of the despised bags. Anybody who has never had to wear one of these wretched things will never know the joy of being free of them. No more checking things all the time, no more souldeadening emptying of the bag last thing at night, my last reminder of the day, as if I needed another, that this was to be my lot. All that was necessary was a cap or bandaid-like patch to protect the stoma and I had a lot of fun badgering the ostomy suppliers for free samples. I believe I am formally cut off regarding any more free stuff with all major companies, a title I hold with pride. Although its an irksome chore to perform for an hour every two days, irrigation has been a godsend. It gave me my confidence, my pride and my body back. During treatment Id golfed, biked, soaked in hot tubs, gone on overnight excursions and generally done almost anything I wanted but once I was done I began travelling in earnest to points in Canada and the States. Everytime I went anywhere I rejoiced; it was like giving the finger to everything bad that had happened. I became adept at clearing airport security with an irrigation kit in tow. Ostomy products are a definite non-starter for further questioning, by the way. One look at that tubing and they cant get rid of you fast enough. And then it was anniversary time. The days leading up to September 17 were infused with sadness and achingly keen recall. I marked that day to the hour. On October 1, one year to the day, I returned to Mt. St. Josephs, again at the hour of my surgery, to sit in the waiting area as I had done before. Seeking closure perhaps? Yes. As I watched others rise when called, be wheeled away to OR I could feel their hearts beating, sense the hope and fear, feel the movement of their gurneys taking them away and I thought Thats not me. I dont have to stay this time and they cant cut me to pieces again. I can leave this time." And I did. I got closure. I played golf later that day on a gloriously beautiful course and marvelled at how different a day it was than the one a year before. I returned to work August 6 and felt as Caesar must have, returning to reclaim a land he had lost, and re-conquered. My boys, my funny, messy, irreverant boys, were overjoyed to have me back as I was overjoyed to be with them. I had returned, when others had not. I had triumphed. I was back, no

longer out of the loop, no longer Miss Sick Person, waiting for this to be over, waiting with too much time on her hands and too many opportunities to grieve. As I had been astonished before with peoples kindness and concern, again I was overwhelmed with how many of my colleagues in a large organization knew of my diagnosis and made a point of coming to ask how I was, how was I doing, what had it been like? I knew there would come a point when fear of cancer recurring would gain the upper hand over hating the colostomy and this began in the fall when I had to start CEA tests. The damn colostomy had always been the biggest issue (backwards priorities) Cancer seemed a secondary burden to that but over time, as I began to take pride in my body again I began to realize that I could indeed still die. It was inconceivable that such a cruel joke could still be played on me but there it was. Id had more than enough time to cruise the internet statistics during the long months I was off work and could recite the predicted mortality rates, including my own, by heart. CEA tests became an agony of waiting, an agony made worse for they meant I had to see my GP every three months. By now my anger and mistrust with her had had ample time to fester and bloom. Id seen her a number of times during the year and had tried to let go of the endless questions that darkened my heart but it was no use. WHY was I never sent for secondary testing after years of blood in my stool? Testing may not have made any difference or it might have forestalled the whole wretched outcome. Ill never know now. WHY hadnt she felt anything during that last DRE? I did ask that last question and Dr. E. was honest in her reply. She just didnt know why shed felt nothing. And she was sorry. Sorry!! Not near as sorry I was thinking of all the opportunities Id had to prevent everything, opportunies lost forever because I trusted her. The thought of her touching me again in the physicals that I had to resume was more than I could bear and I ended our 24 year association. It was an unhappy and sad last meeting, sadder for all the years Id been through with this woman when all she had to say at the last was "Take care." Does she ever think of me, now? I hope so. I think of HER everytime I look at my stoma. Doctors. They became and remain, my unwanted gods with the power to devastate or uplift. I often wonder what they think, do they think of us, their patients, those who must live with the results of their decisions or actions. I wonder what my surgeons think, if they remember me at all, among the myriad of bodies that cross their operating tables. They get to move on but we, the patients, are left behind in the bodies they make. I wonder how much they think about that. I realized I needed counselling around this time and went for a couple of sessions with a woman recommended at BCCA. It was a good decision for among other things I learned I was not alone in my timetable. Many patients run into emotional difficulties AFTER treatment, once they are in remission, once the hooplah has died down and people expect you to get on with it. Live happily ever after, right? You survived and now you should be the same as before, right? Thats one of the little Cancer Myths, that you return to normal. You do not. What really happens is you spend the rest of your life looking over your shoulder wondering if itll come back. You dont really believe that it will, it seems too preposterous to contemplate your own death but you never forget that cold hand that once stroked the back of your neck, that first moment when you turned a corner and came face to face with the surity of your own death. Mr. Cancer, Mr. Death, breathed in your ear that first time and said, "I Mean To Kill You." Then the troops rushed in with all their expertise and tricks and snatched you back. But you dont forget Mr. Death and wind up in a sort of limbo, living your life while knowing it could be taken away sooner than those around you. Thats the best way to describe it. We all know we must die one day, cancer just brings it terrifyingly nearer. The trick is in learning to live life, to live it with joy at what you have now, in spite of the limbo part. Im getting the hang of it. So what of me now, at 15+ months? I have many people to thank for where I find myself today my friends, my family. And most importantly, my partner Joan who has been steadfast in her faith that

we have a future, and unwavering in her love. It hasnt been easy for her, Im sure. But she never ran away, as others might, or have. She stood by me. The internet and the people there who have become my friends have played an important part as well. Those with ostomies, those with cancer, those who live with someone they love who must die. I have lost some of these people already and I know I will lose more but I learn to accept that and take heart in the knowing of them rather than the sorrow of their loss. Its part of living life. And recently I became an volunteer ostomy visitor at Vancouver General Hospital. Its been immensely rewarding to do these visits, stepping into a patients room and seeing that bond in their eyes, the longing to see someone who knows what its like, proof that they wont be a freak, proof that bowel cancer isnt a death sentence. I dont give them platitudes none of that a good attitude is important, or this has saved your life" or (my personal favourite) "youll get used to it." Screw that. There is truth to all this of course, but it seems to come too often from someone who doesnt have an ostomy, doesnt know what its like to crap on top of their own feet, doesnt have to fight for their damn dignity, and has yet to learn the true dread of a bad end. No, I dont tell patients that junk. What I do is reassure them that theyre going to look OK, theyre going to go swimming and wear their old clothes and make love to their husbands and have birthdays and hold their kids. Its OK to be sad, or frightened or angry. I dont kid them that they wont have bad times they will. They just cant let that stop them from living their life. And I tell them it will get better. I dont know quite how to explain that to them, but it does. Somehow it gets better. January 7, 2004 And here I am again. 2003 was a good year, a very good year. Id been in the habit of asking to see the results of CEA tests every three months and each time they went up. Not by a lot, mind you, just a tick at a time, well within normal range but each time I had to wrestle with dread and fear when I saw that damning number. They were going up, relentlessly, and it didnt take a rocket scientist to see where this was heading. I was losing two weeks each round just with worry so I decided Screw it -- I dont want to know anymore. If its bad theyll call me. Otherwise Im tired of worrying about it. This resolution only lasted a couple of rounds of course and I could not resist timidly inquiring, upon embarking on test # 6, Um, my CEA tests -- anything we need to be concerned about there? My new GP dutifully looked up my records. The numbers had gone down! My mindset changed immediately and gone was the dreary foreboding. Just knowing that although the numbers could go up, they could, yes really, also go down. I know they could go up again but ignorance truly is bliss. I dont need to know anymore. Ive learned to stop alarming myself with things best left unread. Its a two-edged sword, this wanting to know everything and Id advise the obsessively curious out there to approach information gathering with a bit of caution. Its good to know what your situation is up to a point but after that you can make yourself crazy trying to second guess the future. Im glad I learned as much as I have but I wish Id wasted less time reading chilling papers and more time living life. Theres that Dr. Polyakov phrase again,, Live Life. I have lived 2003 well though, lest you think all Ive do is sit at a computer or pester doctors for printouts. We continued to travel, Joan & I, one a hilarious junket via cruise ship to las Vegas and another to Mexico, to the same place Id not been able to go the fall I got sick. What a difference between those two times! The first, I was weeping and cleaning up my first accident, preparing to attend my first cancer seminar, thinking bitterly of our friends leaving without us. But I got to go after all, with those same friends. How I revelled in that lovely place. I snorkelled, among the fish. How life-affirming is that, to touch a wild fish in a peacock blue ocean? During the week prior to surgery, Id written cards to Joan, one for each day I would be in hospital, hid them about the house with a clue in each to lead to the next nights hiding place. One for each

night I could not be with her, when I would be lying in a hospital bed and she would be lying at home, each of us alone and afraid. The last card pictured two women drawing a heart in the sand of a beach and I promised Joan in that card that one day this would be us. And so it was, we drew our heart in the sand in Mexico. It is one of my best, and most triumphant images of my cancer journey. Lasting physical side effects of treatment two years ago? I tire more easily. I dont know if that is the logical result of simply getting older or residue from the chemo and rad but a little common sense in pacing, a good nights sleep and a nap here and there take care of that. My eyes, which worsened immediately after the first chemo round, stabilised. A trip to the optometrist last year showed nothing alarming; just a mild change in computer glasses was all that was necessary. My hips have grown stiff and I can no longer run without discomfort; again, I dont know if thats my family tendency to arthritis or because of all the radiation I had through those joints. Thats the most annoying aftereffect, that stiffness. I still walk and bike, my epic treks that I always loved. I sleep well, I eat and drink anything I want. Sometimes I think I can feel a stirring, some turning of a sleeping evil deep in the original site and dont know if this is imagination or not. Thats a mental side effect of getting cancer, by the way, you lose your sense of scale and become hyper-aware of aches and pains, any suggestion that your body might be succumbing once again to the dragon. Since this essay began as a lament for having a colostomy, I should make mention of what my life is like now with this thing. Bad luck to get stuck with a colostomy of course, but its more of a nuisance now than the heartbreak it once was. How I hated it. Being able to irrigate made all the difference, just not having to wear that damn bag changed everything. I began to feel normal again. I could go for long periods at home without wearing anything at all, just could live in my own skin again. Only those with a colostomy can do this, those with urostomies (bladder) and ileostomies (small intestine) must wear the bag. Always. I cannot say how much I admire those who live their lives with this and somehow still keep their souls intact. I would do the same, if I had to -- I know I could -- but Im fortunate be able to regulate myself. I guess its a part of me now, my poor innocent, bungling bystander. My stoma. Am I still angry at what happened? Thinking about my GP who missed everything can still get me hot and I have rehearsed a number of choice words for her that I doubt Id ever say. She is just one of a sadly large number of doctors who miss the signs of colorectal cancer, assume they are something else, prescribe the wrong treatment. Ive heard too many stories of those who presented with bleeding, or constipation, or chronic dietary problems, or who ignored family history and were never properly tested. I dont begrudge having to undergo treatment, nor do I rail against the vagaries of fate that elected me to get cancer. My only real regret is not asking for proper testing when I had the chance. Things might have turned out so differently so it is with this in mind I exhort those who read this not to ignore signs that something is wrong with your bowels. The discomfort of a colonoscopy is a laughably small price to pay to avoid what I have endured. To avoid what needless others surely wilI. I still encounter people who receive my colonoscopy lecture with wan smiles and no way, not me nonsense. I want to slap them. Or perhaps take them in the bathroom with me and see what a stoma looks like. Or perhaps lead them through a cancer ward where they can see what it looks like to die of colorectal cancer. Neither are pretty. I cheated death. Maybe only for a while, maybe for good but Im through with trying to predict the future. The more I participate in the Visitor Program, the more patients stories I hear, the more I realize how deeply lucky I was. I was spared the spread of cancer, and my tests have been clean. Ive met so many who did not get that luxury. I said in my last entry that you do not return to who you used to be after something like this. I was wrong. The longer youre out of the danger zones, the more you can believe that it will turn out OK after all. If that bad year is not exactly forgotten, I believe I have returned to the person I was, albeit

wiser in some ways not entirely wanted, but still essentially the same individual I was. I stopped looking over my shoulder for the dragon all the time. Well,sometimes I give a quick glance back, just for luck. May 27/2005 I intended to do an update January 07 but somehow missed that date. Time flies again, or maybe Im slipping back into my old life more than I know. Yes, time, it goes fast now, unlike the treatment year when it seemed to be suspended. My year of 2004 was good. Palm Springs in March and then a much-awaited trip to Ireland in June with my sister and Joan. This last was more than appropriate for the Ireland trip was the present Joan gave me for my 50th birthday. My 50th birthday, a surprise party for which Shannon flew in. My 50th, and who could have known how Id be celebrating -- wearing both a bag and a PICC line, with months of treatment still ahead. I recall feeling terribly sad, looking at the travel book and realizing Joan had been secretly saving for this for three years and Id fucked it up for her. But we did that trip together, the three of us, just as wed begun my dreadful journey together earlier, two and a half years ago. It was a grand adventure. I ended my three-year testing period this month. No longer do I have to go every three months, to chat with Dr. Moss and then go downstairs for the blood draw. My CEA numbers have been good, better than the previous two years. I seems odd now that I only have to see Moss every six months now, for the next two years. Then Ill be officially in remission. Ill continue asking for and having colonoscopies every year and a half. My third was last fall and Dr. Polyakov said I could go every three years but this feels too uncomfortably long an interval. My oldest brother had polyps at the two year mark. Oh, but I didnt mention my oldest brother? When I was diagnosed, I told my two brothers to go get colonoscopies. Both did and guess what was found in the elder? A large pre-cancerous (whatever that means) polyp in his upper large bowel. Shawn had open surgery exactly one year to the day -- October 1 -- after I had mine. He didnt have to have a colostomy and he never required treatment. His doc said he would have had colon cancer for sure within three years. My brother would have had colon cancer, and possibly worse since Im told the higher the tumor, the more likely the liver will be affected. Or so the theory goes. You hear a lot of cancer theories when youre in the business. Shawn never really knew what he avoided and I let go some time ago of the need for him to acknowlege the fact that I took the bullet for him. I think about cancer, though, and how I might deal with things should it come back. A dear friend is currently dying of a recurrance of breast cancer, and although our circumstances are very different, making a comparison is inescapable. Watching someone else succumb to the same beast that tried to claim YOU once is an unsettling thing. How would I face the certainty of death? I cant possibly know, just as in years past I speculated on how Id handle getting cancer. I had no idea then, it was just a parlour game like schoolgirls play -- what if you were blind, what if you won a million dollars, what if you knew you were going to die young? Its enough for now that my tests have been clear. I feel well. I want to nap more often but hey, Im 53. I have resumed my life. I continue to volunteer and care deeply about those patients I am privileged to visit. At the time I began volunteering I knew a large part of the enterprise was so that I could exorcise my own demons while helping others deal with theirs. The more patients I meet, the more it is driven home again how lucky I have been. Yes, the luck was terrible in the first place, but so many things went right after that, things that could have gone horribly wrong. I could have had surgical complications of the sort I hear of all the time -- ongoing pain, failure to heal, fistulas, blockages, hernias, adhesions. Re-admittance to hospital, second and even third surgeries to correct things. Or

ostomies that are difficult to manage -- fussy with food, prone to blockages, diarrhea, leaks and accidents. Bad appliance fit. Skin problems. Smell. Inability to reclaim ones life. I have none of that and give thanks for my good fortune as these things go. And of course, there are those whose cancer returns, to remind me anew that I am lucky. And what of my body, how is it living with a colostomy now at over 3 1/2 years? Wearing a bag is just a memory now and I marvel at how I did it. Hated those things. I dont really mind irrigating, and only rarely do I resent having to do this -- usually when Im travelling in a group and know I have to do something others dont, have to plan ahead, worry sometimes that the damn thing will embarrass me in some fashion. Not that it does -- its an unusually well-behaved stoma compared to many -but you cant get slack in taking care of yourself. I dont so much mind having a colostomy now as I mind being different. But I dont think about it so much anymore. Its just a part of my body I must maintain. When I look back upon my journey, read the journals I kept that first year, I realize how very far I have come. Im grateful. If someone was to ask me right now what Im most proud of in my life its how I rose above what happened to me.