In January of 2010 I had a routine physical scheduled with my family doctor. As a matter of course I've had a yearly physical, complete with the usual tests for most of the past decade. Some of my results from the last set of tests were cause for concern, and in early February of 2010 I met with my family doctor to discuss my situation. Further tests would confirm that I had Cancer, thus beginning a personal journey that would test the limits of my physical and emotional strengths.
Cancer. A single word uttered by my surgeon was enough to force me to lie on an exam table, engulfed in a paralyzing fear. I couldn't think, I was in shock. Even though I had lost both parents to this disease, I found myself at the age of 50 to be completely overwhelmed and unable to focus. The heat I felt on the back of my neck signaled that I was critically near to passing out.
Cancer. A single word that invoked a primal fear. The fight-or-flight mechanism was useless; the threat was not some external predator, it was my own cells: it was me.
Cancer. A single word so loaded with negative connotations that it was almost a palpable thing. But it wasn't just a word, it was a disease, and I had it.
There is another single word that helps to balance out the negative effects of Cancer, and that word is Hope. Before any technical means are employed, before any judgments are passed, there must be hope. Without hope the journey is over before it starts. For a year I've kept that hope within me alive and my constant silent-but-always-present companion on my journey. My physicians gave me my initial hope, but I sustained and nurtured it as needed. Circumstances changed, challenges were presented and resolved, and hope remained with me through the course of my treatment.
My treatment ranged from blood tests to EEG's, from xrays to CT's, from day surgeries to major surgeries. Over the past year I would have a Colonoscopy, an IV Port insertion, a Liver embolization and two major surgeries: one for the removal of a tumour in my colon, and one for removal of tumours in my liver. Then there were the chemo sessions. A chemo session for me consisted of three parts:
-the pre-chemo bloodwork
-the chemo session proper
-the post-chemo disconnect/port flush
Individually the chemo sessions accounted for 36 separate visits to a medical facility over a 9 month period. My hospitalization for my two surgeries and three day-surgeries would total 18 days. Sprinkle in tests for the pre-admission portion of the surgeries plus visits to the various physicians, recovery times of 4-6 weeks after the major surgeries and suddenly a whole chunk of time has passed.
My latest CT took place on February 3rd, 2010. Two weeks later I would meet with my Oncologist to discuss the findings. On Thursday, February 17th my journey would end for now. Up to now my hopes were conditional on the CT not revealing any heretofore unknown problem. Up to now I was reasonably confident that the treatment over the past year was successful. My confidence, as well as my hopes were not diminished by the CT report: I was in the clear, no new tumours, no lurking alligators in the Cancer swamps. My Oncologist believed that I should be able to return to work.
This was not an unconditional release from the Cancer prison, I would still be required to honour the 'Chemo Parole'. This consists of blood tests every three months, over a period of three years. Further tests, using Ultrasound instead of a CT will be given. For the next several years my health and medical status will be closely watched. Finally, to bring my journey full circle, another Colonoscopy procedure needs to be performed. This time I have every confidence that things will be different, and that the results will be better too. If not, well, I have a lot of experience in dealing with bleak situations. And I have my secret weapon: Hope.
My old journey is over. My new journey begins, as I embark upon a five year adventure, one that should I remain Cancer-free, will truly allow me to say that I have won, that I have Beaten Cancer, that I am truly a survivor. Hope and a whole lot of great medical folks plus an amazing group of family, friends and coworkers have allowed me to succeed thus far.
Wish me luck folks, lets see how far my new journey takes me.
Friday, February 18, 2011
Sunday, February 13, 2011
Winding down: CT scan and a Port Flush chaser
Over a period of ten months I've had Xrays, EEG's, bloodwork and CT scans. Recently I had my first CT scan post liver-surgery. Three weeks after my last chemo session, Thursday February 3rd to be exact. The scan was arranged by my Oncologist and I have high hopes that the results would favour my recovery. Unfortunately I would need to wait two more weeks to meet with my Oncologist to find out the results.
The CT procedure itself, while not common (I've now had four in my life dating back to 2006) was familiar. An IV was placed in my left arm, it's purpose to introduce a contrast-dye. The technician still remembered me from my days when I used to work in that particular hospital, many years prior. This tenuous continuity helped, comforting me in the belief that I was not a nameless unknown, but a person.
As the exam continued the technician would instruct me to 'Take a deep breath and hold it ---- breathe normally.' Several iterations of this process occurred, me doing deep breathing while the CT did its thing. Just call me "Mr. Scan Man" (with apologies to the Andrew Sisters). From start to finish the entire process felt like it was less than 15 minutes. My IV was removed, and I was free to go home. And think of what might be found...
I try not to think too much about the results, or what the future holds. I concentrate on the immediate aspects of life, which included a scheduled visit to the clinic for a routine IV Port flush the week after my CT scan.
Routine Port flush. A year ago I had never heard of a Port Flush. Now watching my blood flowing out of me through a tube, only to be pushed back in is now considered "routine". During the past year there were a few quirks with my port flush i.e. no blood return. My first port flush since my "final" chemo was problem-free. I will need to continue these routine visits on a monthly basis, as long as the Port remains within me. How long will that be depends of course on what my Oncologist tells me.
A week remains until my appointment with my Oncologist to discuss the results. A week to conjure up wildly optimistic predictions. A week to despair about wildly pessimistic predictions. A week remaining until I can resume living my life.
The CT procedure itself, while not common (I've now had four in my life dating back to 2006) was familiar. An IV was placed in my left arm, it's purpose to introduce a contrast-dye. The technician still remembered me from my days when I used to work in that particular hospital, many years prior. This tenuous continuity helped, comforting me in the belief that I was not a nameless unknown, but a person.
As the exam continued the technician would instruct me to 'Take a deep breath and hold it ---- breathe normally.' Several iterations of this process occurred, me doing deep breathing while the CT did its thing. Just call me "Mr. Scan Man" (with apologies to the Andrew Sisters). From start to finish the entire process felt like it was less than 15 minutes. My IV was removed, and I was free to go home. And think of what might be found...
I try not to think too much about the results, or what the future holds. I concentrate on the immediate aspects of life, which included a scheduled visit to the clinic for a routine IV Port flush the week after my CT scan.
Routine Port flush. A year ago I had never heard of a Port Flush. Now watching my blood flowing out of me through a tube, only to be pushed back in is now considered "routine". During the past year there were a few quirks with my port flush i.e. no blood return. My first port flush since my "final" chemo was problem-free. I will need to continue these routine visits on a monthly basis, as long as the Port remains within me. How long will that be depends of course on what my Oncologist tells me.
A week remains until my appointment with my Oncologist to discuss the results. A week to conjure up wildly optimistic predictions. A week to despair about wildly pessimistic predictions. A week remaining until I can resume living my life.
Friday, January 28, 2011
Kindess
Kindness is the realization of the humanity within each of us. Kindness is more than a selfless act or charity, it's an extraordinary act of faith - people who help people, with the sole merit of the act simply to make life better.
I've wanted to write about the extraordinary measures people are willing to go through when they find out I am ill. Attitudes change when the gravity of my situation is realized. Part of that is the drama of Cancer, the almost formalized seriousness that we believe we must have when first we hear someone has this disease. In my case I found out very quickly that support from family, friends, and coworkers was exemplified not only by an outpouring of sympathy, but by acts of kindness.
When I was first diagnosed and began informing those around me of my predicament I was amazed at the response. From the very beginning my close personal friends put their immediate concerns on hold to visit and support me. This pattern continued while I was in the Hospital - family and friends were there to make sure I was not alone. My recovery was helped by simple acts of kindness that made my life easier. Neighbors and friends who thoughtfully brought over gifts of food to ease the chores of simply living each day. Standing offers from friends and coworkers to provide transportation -any time, any place- gifts that are from the heart. Unable to do much physically while recovering from surgery a coworker took it upon himself to clean my gutters. He didn't ask permission, he did what he knew I could not.
Generous gifts, given to me to raise my spirits during my recovery: the MP3 player that I use on my daily walks, the music a reminder of friendship started while I was in University and still continues decades later. The Palm Pilot graciously donated by a fellow coworker when my ancient Palm began to fail. All my doctor appointments, my surgical visits, my meds, my chemo visits, my life-with-cancer is tracked by that device. Plus it can play chess, and best of all, MOVIES! These devices are more than just recreation and appointment calendars, they are a reminder of a time in my life when so many people helped me to continue my journey.
This past year I have seen many examples of kindness extended to me: from the neighbor who shovels out my snow-filled driveway when I can't do it due to chemo, to the neighbor who provides us with home-grown vegetables from his garden (well it's his son who has the green thumb!) All those who have traveled that incredibly boring stretch of highway known as the 401 to visit me. The phone calls from caring friends in countries far away. Emails of support, emails that link to gift certificates at Amazon, emails that let me reconnect with long-lost cousins. The generosity is not just for me, donations made on my behalf to the Cancer Centre extend that kindness to all Cancer patients.
I do not know if I can truly acknowledge all those who have come together to help me during this time. All I know is that so many wonderful people care about me that I am humbled, and eternally grateful. Your kindness has given me more than hope, it's given me reason to savor life.
I've wanted to write about the extraordinary measures people are willing to go through when they find out I am ill. Attitudes change when the gravity of my situation is realized. Part of that is the drama of Cancer, the almost formalized seriousness that we believe we must have when first we hear someone has this disease. In my case I found out very quickly that support from family, friends, and coworkers was exemplified not only by an outpouring of sympathy, but by acts of kindness.
When I was first diagnosed and began informing those around me of my predicament I was amazed at the response. From the very beginning my close personal friends put their immediate concerns on hold to visit and support me. This pattern continued while I was in the Hospital - family and friends were there to make sure I was not alone. My recovery was helped by simple acts of kindness that made my life easier. Neighbors and friends who thoughtfully brought over gifts of food to ease the chores of simply living each day. Standing offers from friends and coworkers to provide transportation -any time, any place- gifts that are from the heart. Unable to do much physically while recovering from surgery a coworker took it upon himself to clean my gutters. He didn't ask permission, he did what he knew I could not.
Generous gifts, given to me to raise my spirits during my recovery: the MP3 player that I use on my daily walks, the music a reminder of friendship started while I was in University and still continues decades later. The Palm Pilot graciously donated by a fellow coworker when my ancient Palm began to fail. All my doctor appointments, my surgical visits, my meds, my chemo visits, my life-with-cancer is tracked by that device. Plus it can play chess, and best of all, MOVIES! These devices are more than just recreation and appointment calendars, they are a reminder of a time in my life when so many people helped me to continue my journey.
This past year I have seen many examples of kindness extended to me: from the neighbor who shovels out my snow-filled driveway when I can't do it due to chemo, to the neighbor who provides us with home-grown vegetables from his garden (well it's his son who has the green thumb!) All those who have traveled that incredibly boring stretch of highway known as the 401 to visit me. The phone calls from caring friends in countries far away. Emails of support, emails that link to gift certificates at Amazon, emails that let me reconnect with long-lost cousins. The generosity is not just for me, donations made on my behalf to the Cancer Centre extend that kindness to all Cancer patients.
I do not know if I can truly acknowledge all those who have come together to help me during this time. All I know is that so many wonderful people care about me that I am humbled, and eternally grateful. Your kindness has given me more than hope, it's given me reason to savor life.
Monday, January 17, 2011
The Chemo Chronicles - Part XII
The best time to write a blog about Cancer is when you're not undergoing any treatment. When you write during the treatment, your heart and mood are locked into the current process. Life becomes How Can I Endure This Anymore? Writing becomes a challenge when coupled with the bleak winter weather, scant motivation to do anything physical and the always underlying worry if treatment is actually working.
If treatment is not working I'm going to have to register a complaint. Probably with myself as I'm the one who needs to make it work. I once wrote that I believe the technical means were at hand to defeat cancer and that I was the one to provide the resolve. In the past few months that resolve has if not exactly wavered, hasn't been the bedrock-solid foundation I need to build my hope upon.
January 11th, 2011 was the day my twelfth chemotherapy session. Prior to this last session my growing tiredness of the whole process was wearing me thin. I needed a break. Chemo #12 will be the last treatment for an unknown time. My Cancer plan calls for me to have a CT scan later in February. It's been a long haul of almost ten months, where my focus is on the Cancer Plan, the Cure and the resumption of life as I once knew it. I've completed my last chemotherapy treatment, and I feel uncertain of what the results will be, of what my life will become, of what path I need to follow.
For the two weeks prior to my 12th chemo I gradually resumed much of my normal activities. My appetite returned, my energy level increased as I resumed my daily walks. Motivation to complete two outstanding 'chemo clocks' prompted me to build my projects once more. I played a little chess, tried to study some programming, but mostly this period can be characterized by 'just tired of it all'. I watched a lot of movies and kept wondering what the 'last' chemo means to me. Am I done? Am I well? Will I regain my former life? And of course the question I always dread...will the Cancer return?
I know the answer to the last question, it's easy: If the Cancer returns I deal with it then. In the meantime, I just need to concentrate on the task at hand. For the present this means managing to get through the 12th chemo.
Chemo #12 started late at 11AM instead of the scheduled 1030 time. Once more I would be seated in chair #11. Once more I unbuttoned my shirt, unselfconsciously in a room full of strangers, so that my nurse could begin the chemo process. Once more I had a problem: the blood return failed. The blood return is an IVPort self-check, where the medical staff can observe if the Port is working correctly. As has often been the case for me of late, this turns out to be a hit-or-miss affair. The general strategy to resolve this problem is to cough, raise my arm on the side of port above my head, cough some more, and see what happens. When these strategies failed I was reclined in my chair til I was completely horizontal, and subsequent variations of this process were tried again.
Liquid Plumbr, chemo-style was the solution. A small tube of this magic liquid is linked to my port, and the inverted tube is then taped onto my shirt. This gives me some temporary freedom from the IV Pole! I can wander around for some 40 minutes, unhindered by my chemical tether. So I walk around the hospital getting some much-needed exercise, and more importantly, to walk off the frustrations I've had about this "last chemo".
Forty minutes later I'm back in the chair with the blood return fully functional. Now the the well-known process resumes: saline solution, followed by the chemo medicine proper. After the chemo drip will be my Avastin, followed by the 5FU flush, the precursor to the 5FU pump being attached to me one more time. During the waiting time I am restless, the internet is not working for the hospital and I am unable to connect up my email. I try to watch a movie, the classic "Inherit the Wind" with Spencer Tracy and Gene Kelly in a rare non-musical role. My shots to relieve my feelings of nausea are given, my body reacting exactly as it has the prior 11 times. I can do chemo in my sleep, if only I were able to sleep...still no internet and it's almost noon. I thank the food services staff for their offer of lunch, but I am too keyed up to eat. Still restless I stand, unable to pace however due to the constraints of my IV pole and my chemical tethers. I can't sit. I can't rest. I have no internet and I can no longer concentrate on my movie. I need to do something. At last I find that something: fixing the loose plates of the A/C outlets.
All the cover plates of the A/C outlets were loose, but not dangerously so. With the continual plugging and unplugging of IV Poles and personal electronics, this is bound to happen. Fortunately I have my Swiss-army-style knife with me, and the bottle-opener/flat screwdriver blade is perfect for the task at hand. Soon all the A/C cover plates within my limited range are securely fastened, and I feel like I've accomplished something useful. I don't think I've used a bottle opener in 30 years though, since the advent of the 'twist off' cap.
After an interminable time my chemo session was done for that day. Sometime around 3PM I get to go home. My 5FU bottle was secured to my port for hopefully the last time. I headed home, tired and worn out from the whole process.
With this second round of chemotherapy I have noticed that sleep the first night is difficult. I can't say why this is but the soreness of my chest is significant. The first night with the 5FU pump is my most difficult, I do not sleep deeply, I am constantly sore and unable to find a comfortable resting position. I am my most miserable during this time, and perhaps because it's the "last" chemo I feel more worn out rather than the elated feeling the accompanies one when a milestone has been reached. For the next several days I do nothing but rest, the couch and my bed are my best friends. I don't really sleep as not move. I get up for my meals but of course there's little appetite within me. The taste of water is unappealing, but juices help. I need to keep fluids in me but it really is a losing battle this time. I spend the second day in my PJ's not even bothering to do more than the basic obligations. I am really tired and I just want to do nothing. Just rest, that's all. I deserve that opportunity not do anything don't I?
When I started my chemo on Tuesday, the Thursday disconnect day for my 5FU pump seemed impossibly far away. The Wednesday was only distinguished by my choice of sleeping areas: couch or bed. When Thursday finally arrived I began to feel hopeful once more, the journey was taking me away from the damn chemo.
Thursday January 13th is worthy to remember, simply because I need to acknowledge my efforts in persevering through the whole chemo process. But I could not have done it without help. A great deal of help. I delivered boxes of chocolates to the medical staff who were there for me time and again. The clinic where they disconnect my 5FU pump. The reception desk at the Cancer Centre where I am greeted by name on my arrival. The lab where my blood was dutifully drawn every two weeks. Finally, for the nurses in the chemotherapy area. They are all terrific, professional, compassionate and caring people. Boxes of chocolates seem somehow too little for the thanks I want to express to these wonderful folks who bring so much compassion and care to my life.
Chemo #12 was completed. By the weekend I would be better, physically and emotionally. I would shovel snow Friday morning and regret it for the remainder of the day (echoes of the chemo still resonating in my chest..) but by Saturday shovelling snow was no problem. I would be walking Sunday without impairment, energized and alive, recovery completed from the chemo. I would build my last chemo clock. I had given away the prior eleven clocks to those persons who were significant in aiding my struggle with Cancer. I would keep chemo clock #12 for myself, as a remembrance to my time with Cancer, Chemo and Care. I would be happy with who I am, what I have accomplished, where I've been and most importantly, where my journey takes me next.
The chemo may be completed for now, but my interaction with the medical system continues. A CT scan awaits me, as do meetings with my Oncologist and Surgeon. I do not know my future, but then who does? For now I am happy, and alive. So far I have achieved all my goals and objectives. My 12th chemo is finished, but my journey continues. I wonder where it will take me next?
If treatment is not working I'm going to have to register a complaint. Probably with myself as I'm the one who needs to make it work. I once wrote that I believe the technical means were at hand to defeat cancer and that I was the one to provide the resolve. In the past few months that resolve has if not exactly wavered, hasn't been the bedrock-solid foundation I need to build my hope upon.
January 11th, 2011 was the day my twelfth chemotherapy session. Prior to this last session my growing tiredness of the whole process was wearing me thin. I needed a break. Chemo #12 will be the last treatment for an unknown time. My Cancer plan calls for me to have a CT scan later in February. It's been a long haul of almost ten months, where my focus is on the Cancer Plan, the Cure and the resumption of life as I once knew it. I've completed my last chemotherapy treatment, and I feel uncertain of what the results will be, of what my life will become, of what path I need to follow.
For the two weeks prior to my 12th chemo I gradually resumed much of my normal activities. My appetite returned, my energy level increased as I resumed my daily walks. Motivation to complete two outstanding 'chemo clocks' prompted me to build my projects once more. I played a little chess, tried to study some programming, but mostly this period can be characterized by 'just tired of it all'. I watched a lot of movies and kept wondering what the 'last' chemo means to me. Am I done? Am I well? Will I regain my former life? And of course the question I always dread...will the Cancer return?
I know the answer to the last question, it's easy: If the Cancer returns I deal with it then. In the meantime, I just need to concentrate on the task at hand. For the present this means managing to get through the 12th chemo.
Chemo #12 started late at 11AM instead of the scheduled 1030 time. Once more I would be seated in chair #11. Once more I unbuttoned my shirt, unselfconsciously in a room full of strangers, so that my nurse could begin the chemo process. Once more I had a problem: the blood return failed. The blood return is an IVPort self-check, where the medical staff can observe if the Port is working correctly. As has often been the case for me of late, this turns out to be a hit-or-miss affair. The general strategy to resolve this problem is to cough, raise my arm on the side of port above my head, cough some more, and see what happens. When these strategies failed I was reclined in my chair til I was completely horizontal, and subsequent variations of this process were tried again.
Liquid Plumbr, chemo-style was the solution. A small tube of this magic liquid is linked to my port, and the inverted tube is then taped onto my shirt. This gives me some temporary freedom from the IV Pole! I can wander around for some 40 minutes, unhindered by my chemical tether. So I walk around the hospital getting some much-needed exercise, and more importantly, to walk off the frustrations I've had about this "last chemo".
Forty minutes later I'm back in the chair with the blood return fully functional. Now the the well-known process resumes: saline solution, followed by the chemo medicine proper. After the chemo drip will be my Avastin, followed by the 5FU flush, the precursor to the 5FU pump being attached to me one more time. During the waiting time I am restless, the internet is not working for the hospital and I am unable to connect up my email. I try to watch a movie, the classic "Inherit the Wind" with Spencer Tracy and Gene Kelly in a rare non-musical role. My shots to relieve my feelings of nausea are given, my body reacting exactly as it has the prior 11 times. I can do chemo in my sleep, if only I were able to sleep...still no internet and it's almost noon. I thank the food services staff for their offer of lunch, but I am too keyed up to eat. Still restless I stand, unable to pace however due to the constraints of my IV pole and my chemical tethers. I can't sit. I can't rest. I have no internet and I can no longer concentrate on my movie. I need to do something. At last I find that something: fixing the loose plates of the A/C outlets.
All the cover plates of the A/C outlets were loose, but not dangerously so. With the continual plugging and unplugging of IV Poles and personal electronics, this is bound to happen. Fortunately I have my Swiss-army-style knife with me, and the bottle-opener/flat screwdriver blade is perfect for the task at hand. Soon all the A/C cover plates within my limited range are securely fastened, and I feel like I've accomplished something useful. I don't think I've used a bottle opener in 30 years though, since the advent of the 'twist off' cap.
After an interminable time my chemo session was done for that day. Sometime around 3PM I get to go home. My 5FU bottle was secured to my port for hopefully the last time. I headed home, tired and worn out from the whole process.
With this second round of chemotherapy I have noticed that sleep the first night is difficult. I can't say why this is but the soreness of my chest is significant. The first night with the 5FU pump is my most difficult, I do not sleep deeply, I am constantly sore and unable to find a comfortable resting position. I am my most miserable during this time, and perhaps because it's the "last" chemo I feel more worn out rather than the elated feeling the accompanies one when a milestone has been reached. For the next several days I do nothing but rest, the couch and my bed are my best friends. I don't really sleep as not move. I get up for my meals but of course there's little appetite within me. The taste of water is unappealing, but juices help. I need to keep fluids in me but it really is a losing battle this time. I spend the second day in my PJ's not even bothering to do more than the basic obligations. I am really tired and I just want to do nothing. Just rest, that's all. I deserve that opportunity not do anything don't I?
When I started my chemo on Tuesday, the Thursday disconnect day for my 5FU pump seemed impossibly far away. The Wednesday was only distinguished by my choice of sleeping areas: couch or bed. When Thursday finally arrived I began to feel hopeful once more, the journey was taking me away from the damn chemo.
Thursday January 13th is worthy to remember, simply because I need to acknowledge my efforts in persevering through the whole chemo process. But I could not have done it without help. A great deal of help. I delivered boxes of chocolates to the medical staff who were there for me time and again. The clinic where they disconnect my 5FU pump. The reception desk at the Cancer Centre where I am greeted by name on my arrival. The lab where my blood was dutifully drawn every two weeks. Finally, for the nurses in the chemotherapy area. They are all terrific, professional, compassionate and caring people. Boxes of chocolates seem somehow too little for the thanks I want to express to these wonderful folks who bring so much compassion and care to my life.
Chemo #12 was completed. By the weekend I would be better, physically and emotionally. I would shovel snow Friday morning and regret it for the remainder of the day (echoes of the chemo still resonating in my chest..) but by Saturday shovelling snow was no problem. I would be walking Sunday without impairment, energized and alive, recovery completed from the chemo. I would build my last chemo clock. I had given away the prior eleven clocks to those persons who were significant in aiding my struggle with Cancer. I would keep chemo clock #12 for myself, as a remembrance to my time with Cancer, Chemo and Care. I would be happy with who I am, what I have accomplished, where I've been and most importantly, where my journey takes me next.
The chemo may be completed for now, but my interaction with the medical system continues. A CT scan awaits me, as do meetings with my Oncologist and Surgeon. I do not know my future, but then who does? For now I am happy, and alive. So far I have achieved all my goals and objectives. My 12th chemo is finished, but my journey continues. I wonder where it will take me next?
Monday, January 3, 2011
The Chemo Chronicles - Part XI
Christmas and Chemotherapy are not my idea of a holiday tradition. My eleventh and hopefully second-last session took place a mere three days after Christmas. The days leading up to this session, like the days leading up to any Christmas were squeezed together with social visits, stealthy Christmas shopping and trying not get sick.
For part of December I felt the effects of a dry, sore throat. Not much coughing, but sneezing always produced bloody kleenex. The extremely dry conditions, the cold, the chemo, and my lack of desire to drink liquids played it's part in feeling so run-down. The cold December restricted my usual daily walks, my lifestyle now had the couch potato effect, and new aches began to appear. Physical ailments aside, the Christmas season brings its own emotional aches and pains.
Nineteen Ninety Eight, the last Christmas I spent with my mom. She was going through the final stages of pancreatic cancer, and her number one son went North for a rare family Christmas. Her journey would finish in February of the New Year. My journey began in February this past year, as the result of a routine physical. I will always remember that final visit with my mom, and relive it every time I hear the Ave Maria from "Going My Way". My Christmas tradition, to watch all the hokey old movies: "It's a Wonderful Life", "Going My Way". Simple classic stuff, nothing deep, just wishy-washy sentimentality. I miss you mom.
Life goes on and I go with it is one of my catchphrases, and it helps to realize that stuff gets done regardless. For instance I played my very first formal game of chess, complete with clock and recording the moves. Now this may seem a bit trivial, but it was unique to me. My very experienced opponent set up the time for one hour per side. Normally I play in a fashion that can be best described as "move then think", which is typically opposite to what the good players do. For this game I tried to be a good player. That illusion lasted a mere 14 moves, but I dutifully hung on til the 40th move or so before conceding the inevitable. I was surprised to find that almost two hours had literally flown by. I was more surprised at how tired I was: thinking is hard work.
Remembering is getting to be hard work for me, at least this past month. The visits from my close friends seem hard to reconstruct, I resort to my handwritten journals to see what I've done, who has visited and when it happened. I can't really blame the chemo effects for this however, it's purely the season and the emotions that go with it. Deep down I wonder if this is going to be the last Christmas.
Christmas day finally arrives, is celebrated, then departs again for another year. I'll see it when it comes 'round again next year is a promise I make to myself. My eleventh chemo is in three more days, my sore throat is finally gone, but I still have an aching right side. The lack of exercise exacerbates everything. This upcoming chemo has an additional challenge: blood work needs to be done prior, but the clinic is closed during the holidays. This leads to the Great Cab Ride of 2010.
Normally I have a ride that brings me to my chemo appointments, but as I was to go in early, I decided to let her sleep in and just take a cab. Not a big deal, I could bike to the clinic in 30 minutes as it's not that far away. However I had the Cab Driver Who Drove Very Very Slow. My ride at a sedate 40km an hour down a major traffic thoroughfare was an exercise in patience. The irony of 'hurry up and wait' is not lost. I finally arrive at the lab to find that the waiting room barely had anyone in it. All that rushing for nothing, and my bloodwork is done in less than 20 minutes. I have almost two hours before my session is scheduled to start, now what?
Being Canadian the answer is obvious: time for a Timmie's coffee. It's a big hospital and there are two kiosks serving the only chemical equivalent I would willingly take on a daily basis. I drink my coffee, I take my pre-chemo pills. I wait, there is still an hour and a half before my appointment. I walk the corridors of a hospital where I once worked some 20 years prior, my start in "real" UNIX systems administration began here. I have some good memories of this place, however I never thought I would return in this fashion. The walking is making me sweat, as I am still bundled in my heavy winter jacket and carrying my backpack. The corridors are long and well lit, with little traffic. I decide I need some real exercise. Gathering my belongings onto a chair fortuitously available to me, I begin my walking. My pace ramps up, this is the first time I've expended exercise energy in weeks and my cadence increases rapidly. I fumble in my pocket for my sony mp3 walkman. Skip the slow songs, skip the classicals, I want a fast tempo, I want to move, I want to get away, I want to live. I fly down the hallway, reach the end, turn, zoom back. Again and again, for over an hour. I'm bathed in sweat when the pager goes off, notifying me that fun is over and it's now time to take my treatment. The high I get from this exercise is miraculous, I have smile on my face, damned if I'm not just plain happy. The Christmas blahs, the needless worrying, the aches and pains are all gone! Just one more chemo after this...
Chair #11 is in the corner facing the Window, watching the December weather, undecided if it's going to be sunny or cloudy. The routine of chemo, once so intimidating is just one more thing I have to do to get better. The process is familiar, I pull my computer and notebook out of my backpack, arranged so that the cords do not interfere with the IV pole for later. Nesting instinct perhaps, I make this space my own for the next four hours. My routine is simply that: routine. Blood return, my usual problem, is fine. Bloodwork results are very good, my White Blood Count above average, Red a little low and the Hemoglobin, low but much improved over the past few weeks of B12 shots and Iron pill supplements. By the numbers I'm doing pretty good. My nurse checks my blood pressure: 119/75 after all that walking. I feel as good as I have in weeks, yet I know that in a few hours all this will be wiped away as the chemotherapy does its job: killing cancer.
Killing cancer. Killing me too. The little death of chemo that extends for three days while I wear the 5FU pump. In three days I will be resurrected. For now I endure what needs to be endured.
My session in the chair is almost done, but now I have a problem: the blood return is not working. Silly IVPort problems, I am now tethered for another half-hour as the "Liquid PlumbR" equivalent cleans out the port. Finally a good return and the 5FU pump can be attached to me. I get to go home, after being in the hospital some six hours today. I figure that after all this exercise and the extended session that I'd just crash.
Once again the chemo threw me a curve. In the past after the initial session in the chair I can think of doing nothing but going to sleep as soon as I get home. I rest but am not rested. Uncomfortable the entire day, never actually experiencing nausea, but never feel like I wouldn't be sick. The large foam cup was always within reach. The pressure on my chest was constant, and varied in intensity as I tried to find a comfortable position. I could not lie on my back or my side, as the feelings of nausea tended to increase. Only on my stomach did these feelings subside, but I cannot sleep on my stomach. That first night of chemo I watched the clock as it crawled to 530am. Sometimes all we can do is endure, I am so tired of chemo, I just want it to be over, I am just so tired...
I sleep maybe 3 hours, get up and force myself through the morning routine. Of late I lack much of my former discipline, I need to concentrate to take my morning pills, to take my temperature and weight. I watch a movie but I cannot remember what occurred. The day drifts in an out, chemo sucks this time, it really is not fun. By 1130 that night I have had enough of keeping the couch warm, and go to sleep. I only wake up a few times, but the crushing pressure on my chest has dissipated and I sleep more or less normally. Only one more day of wearing the pump before I can become myself again.
My final morning of chemo reveals that I am short of pills. A quick call to the Cancer Centre pharmacy and my refill order is placed. All the staff at the Cancer Centre are extremely helpful, my prescription will be ready by the afternoon. My only goal for the remainder of the morning is to get rid of the 5FU pump. The now familiar run to the clinic is so routine as to be boring. Few people waiting, I am in and out within half an hour. The pump is enveloped within two heavy plastic bags, the large CYTOTOXIC warning prominent. My eleventh chemo session is dutifully completed when I return the spent bottle to the Cancer Centre. Technically I have one more pill to take that night, but my freedom is restored once the bottle is off of me.
My second round of chemotherapy has proved to be more difficult than what I had experienced during the summer. Each session seems to add a different wrinkle, throwing off expectations and eroding some of my confidence. The challenge is to survive the continual erosion that the chemotherapy process has on body and mind. The journey I am on started a long time ago, sometimes the path is clear, sometimes lost in Terra Incognita. Somehow I always manage to find my way to the next destination. The final chemotherapy session is only two weeks away. All that remains afterwards is the CT scan. All my hopes are now pinned to results of that scan. My journey continues, but I wonder where my destination will be.
For part of December I felt the effects of a dry, sore throat. Not much coughing, but sneezing always produced bloody kleenex. The extremely dry conditions, the cold, the chemo, and my lack of desire to drink liquids played it's part in feeling so run-down. The cold December restricted my usual daily walks, my lifestyle now had the couch potato effect, and new aches began to appear. Physical ailments aside, the Christmas season brings its own emotional aches and pains.
Nineteen Ninety Eight, the last Christmas I spent with my mom. She was going through the final stages of pancreatic cancer, and her number one son went North for a rare family Christmas. Her journey would finish in February of the New Year. My journey began in February this past year, as the result of a routine physical. I will always remember that final visit with my mom, and relive it every time I hear the Ave Maria from "Going My Way". My Christmas tradition, to watch all the hokey old movies: "It's a Wonderful Life", "Going My Way". Simple classic stuff, nothing deep, just wishy-washy sentimentality. I miss you mom.
Life goes on and I go with it is one of my catchphrases, and it helps to realize that stuff gets done regardless. For instance I played my very first formal game of chess, complete with clock and recording the moves. Now this may seem a bit trivial, but it was unique to me. My very experienced opponent set up the time for one hour per side. Normally I play in a fashion that can be best described as "move then think", which is typically opposite to what the good players do. For this game I tried to be a good player. That illusion lasted a mere 14 moves, but I dutifully hung on til the 40th move or so before conceding the inevitable. I was surprised to find that almost two hours had literally flown by. I was more surprised at how tired I was: thinking is hard work.
Remembering is getting to be hard work for me, at least this past month. The visits from my close friends seem hard to reconstruct, I resort to my handwritten journals to see what I've done, who has visited and when it happened. I can't really blame the chemo effects for this however, it's purely the season and the emotions that go with it. Deep down I wonder if this is going to be the last Christmas.
Christmas day finally arrives, is celebrated, then departs again for another year. I'll see it when it comes 'round again next year is a promise I make to myself. My eleventh chemo is in three more days, my sore throat is finally gone, but I still have an aching right side. The lack of exercise exacerbates everything. This upcoming chemo has an additional challenge: blood work needs to be done prior, but the clinic is closed during the holidays. This leads to the Great Cab Ride of 2010.
Normally I have a ride that brings me to my chemo appointments, but as I was to go in early, I decided to let her sleep in and just take a cab. Not a big deal, I could bike to the clinic in 30 minutes as it's not that far away. However I had the Cab Driver Who Drove Very Very Slow. My ride at a sedate 40km an hour down a major traffic thoroughfare was an exercise in patience. The irony of 'hurry up and wait' is not lost. I finally arrive at the lab to find that the waiting room barely had anyone in it. All that rushing for nothing, and my bloodwork is done in less than 20 minutes. I have almost two hours before my session is scheduled to start, now what?
Being Canadian the answer is obvious: time for a Timmie's coffee. It's a big hospital and there are two kiosks serving the only chemical equivalent I would willingly take on a daily basis. I drink my coffee, I take my pre-chemo pills. I wait, there is still an hour and a half before my appointment. I walk the corridors of a hospital where I once worked some 20 years prior, my start in "real" UNIX systems administration began here. I have some good memories of this place, however I never thought I would return in this fashion. The walking is making me sweat, as I am still bundled in my heavy winter jacket and carrying my backpack. The corridors are long and well lit, with little traffic. I decide I need some real exercise. Gathering my belongings onto a chair fortuitously available to me, I begin my walking. My pace ramps up, this is the first time I've expended exercise energy in weeks and my cadence increases rapidly. I fumble in my pocket for my sony mp3 walkman. Skip the slow songs, skip the classicals, I want a fast tempo, I want to move, I want to get away, I want to live. I fly down the hallway, reach the end, turn, zoom back. Again and again, for over an hour. I'm bathed in sweat when the pager goes off, notifying me that fun is over and it's now time to take my treatment. The high I get from this exercise is miraculous, I have smile on my face, damned if I'm not just plain happy. The Christmas blahs, the needless worrying, the aches and pains are all gone! Just one more chemo after this...
Chair #11 is in the corner facing the Window, watching the December weather, undecided if it's going to be sunny or cloudy. The routine of chemo, once so intimidating is just one more thing I have to do to get better. The process is familiar, I pull my computer and notebook out of my backpack, arranged so that the cords do not interfere with the IV pole for later. Nesting instinct perhaps, I make this space my own for the next four hours. My routine is simply that: routine. Blood return, my usual problem, is fine. Bloodwork results are very good, my White Blood Count above average, Red a little low and the Hemoglobin, low but much improved over the past few weeks of B12 shots and Iron pill supplements. By the numbers I'm doing pretty good. My nurse checks my blood pressure: 119/75 after all that walking. I feel as good as I have in weeks, yet I know that in a few hours all this will be wiped away as the chemotherapy does its job: killing cancer.
Killing cancer. Killing me too. The little death of chemo that extends for three days while I wear the 5FU pump. In three days I will be resurrected. For now I endure what needs to be endured.
My session in the chair is almost done, but now I have a problem: the blood return is not working. Silly IVPort problems, I am now tethered for another half-hour as the "Liquid PlumbR" equivalent cleans out the port. Finally a good return and the 5FU pump can be attached to me. I get to go home, after being in the hospital some six hours today. I figure that after all this exercise and the extended session that I'd just crash.
Once again the chemo threw me a curve. In the past after the initial session in the chair I can think of doing nothing but going to sleep as soon as I get home. I rest but am not rested. Uncomfortable the entire day, never actually experiencing nausea, but never feel like I wouldn't be sick. The large foam cup was always within reach. The pressure on my chest was constant, and varied in intensity as I tried to find a comfortable position. I could not lie on my back or my side, as the feelings of nausea tended to increase. Only on my stomach did these feelings subside, but I cannot sleep on my stomach. That first night of chemo I watched the clock as it crawled to 530am. Sometimes all we can do is endure, I am so tired of chemo, I just want it to be over, I am just so tired...
I sleep maybe 3 hours, get up and force myself through the morning routine. Of late I lack much of my former discipline, I need to concentrate to take my morning pills, to take my temperature and weight. I watch a movie but I cannot remember what occurred. The day drifts in an out, chemo sucks this time, it really is not fun. By 1130 that night I have had enough of keeping the couch warm, and go to sleep. I only wake up a few times, but the crushing pressure on my chest has dissipated and I sleep more or less normally. Only one more day of wearing the pump before I can become myself again.
My final morning of chemo reveals that I am short of pills. A quick call to the Cancer Centre pharmacy and my refill order is placed. All the staff at the Cancer Centre are extremely helpful, my prescription will be ready by the afternoon. My only goal for the remainder of the morning is to get rid of the 5FU pump. The now familiar run to the clinic is so routine as to be boring. Few people waiting, I am in and out within half an hour. The pump is enveloped within two heavy plastic bags, the large CYTOTOXIC warning prominent. My eleventh chemo session is dutifully completed when I return the spent bottle to the Cancer Centre. Technically I have one more pill to take that night, but my freedom is restored once the bottle is off of me.
My second round of chemotherapy has proved to be more difficult than what I had experienced during the summer. Each session seems to add a different wrinkle, throwing off expectations and eroding some of my confidence. The challenge is to survive the continual erosion that the chemotherapy process has on body and mind. The journey I am on started a long time ago, sometimes the path is clear, sometimes lost in Terra Incognita. Somehow I always manage to find my way to the next destination. The final chemotherapy session is only two weeks away. All that remains afterwards is the CT scan. All my hopes are now pinned to results of that scan. My journey continues, but I wonder where my destination will be.
Thursday, December 16, 2010
The Chemo Chronicles - Part X
December is a cold month here. Snow is accumulating, and I can't go for my daily walks, just too damn cold outside. I watched my neighbor as he took it upon himself to shovel out my driveway. Great neighbors, knowing my condition and my aversion to manual labour he did what I could not do. Then the snow stopped and the Ice Age began. That was Sunday. Monday I was forced to venture out to get my pre-chemo bloodwork done.
Monday was sunny but oh-so cold; thankfully my down-filled jacket kept me warm, although I do tend to leave a trail of feathers everywhere I go. But let me ask you, if down feathers keep you so warm, why do all the bird fly south? However the bloodwork was done in a short time, and as I did not not receive any calls postponing my next-day appointment, Chemo #10 was on track.
Tuesday (it is a chronicle after all) December 14 I showed up at the Cancer Centre Pharmacy to get my 5FU pump. The pump was not ready again for the 3rd time in a row, but will be in time for me to go home. For as much that is discussed about the side-effects of the chemo, I find the pump to be what really drains me. But it's only for a few days, and since I did it before I can do it again. Only two more treatments after this (hopefully).
Chair #9 will be my chair for this session. With the AVASTIN in addtion to my 'regular' chemo medicine, I'm in it for almost 4 hours. Fortunately I have my trusty Acer Aspire Netbook beside me-for the past 9 months it is attached to me as close as my IV Port. I wonder if I should have a USB port installed in the same fashion as the IV Port! (don't laugh, there are people who are doing crazy implants like that!) Well I don't really want to become Borg-like, but without my electronic escape I really do feel lost.
The chemo process is goes off routinely: blood return ok, saline solution, chemo meds and avastin. Drip-by-drip over a four hour span. The two shots are administered immediately after my washroom breaks. This time however my IV pole had all good wheels; some of those poles act like they were shopping carts in a previous life (always one with a wobbly wheel).
Prior to chemo my breakfast is light, just some Special K and toast and banana. In the chemo chair I can't tell if it's hunger pangs or I'm going to get sick, the two feelings are both linked and constantly at war within me. My appetite is the loser however, and I barely eat anything but some soup and a few chicken nuggets when I get home. I had refused the kind offer from the Hospital for their lunch; I'm brave but not that brave. Oh, stereotypes of bad hospital food aside, ithe lunch is generally ok, but my tastebuds refuse to accept that what is on my tray is actually tasty. There's a wisdom that one does not eat one's favorite foods during chemo. Bland foods seem to be what I can stomach. In my early days of the chemo process I would sometimes wake up late at night with a craving, and would get up to satisfy that craving. Lately however I find I need to discipline myself to eat. Small meals, snacks throughout the day really, I don't eat 'three squares' anymore. (look up British naval history for the reference to 'three square meals', I believe it has to do with the wooden serving plates the men were given. But I digress) What bothers me more is that I find that I am not drinking liquids. My water glass, a fixture on the table next me remains untouched. I should be drinking a glass ever hour or two I think. Water just doesn't taste the same during chemo. Sometimes I squirt a little lemon juice into it, or supplant it with juices. But not all juices -anything like OJ or Tomato that is mildly acidic can be painful to drink during chemo, the whole mouth is sensitive. Make sure your toothbrush is EXTRA-extra-soft, for the bristles can irritate the gums. Forget flossing unless you enjoy the Steve Martin-Bill Murray dental scene from "Little Shop of Horrors". Remarkably though, once I've endured my 3 days of chemo within 24-48 hours my normal activities can be resumed. Were it not for the exrtemely cold weather (and me an ex Northern Ontario lad) I would be walking outside all the time. Oh and I learned my lesson about physical extertion during chemo time: Don't.
My chemo session was nearly over when a new patient sat down in the chair next to me. Her treatment was about to commence when she pulled out a laptop. A netbook really. She noticed I was using my netbook and came over to see if I was able to get on the internet. As I was happily surfing away, I assumed it was her connection. She asked if I wouldn't mind looking at her computer, and once I revealed my IT credentials she was so very pleased to have a 'tech suppport' guy right there. So now the pressure is on me to live up to my self-hype as an IT tech. Sure enough when I checked it out her IP was acquired by IE7 was not bringing up the login credentials page. I knew it worked earlier, as I was on my laptop (running LINUX, with Firefox. Remember that for later) So I did all the usual Windows things, cleared caches, reset security, the laying on of hands. Still nothing, I would actually observe the Cisco redirect, but IE7 stalwartly refused to display the page. I was running out of time as my session was now completed by this time and I really wanted to go home and rest. Still I had few more tricks up my sleeve; although I run LINUX as my primary OS, my netbook is dual boot (plus I had virtual box installed so I could run OpenBSD or Win2K if I really wanted to). But I booted up into XPHOME (same as the other netbook) and tried my IE7 out. Sure enough same issue. Oh Bother.
Plan B, where the B stands for reBoot. Back into linux, could the session authentication be down? Nope, I was in in a flash. A Flash drive would solve the problem, fortunately I happened to have a live linux distro on an SD card and a usb-attached card reader (acer's don't boot from SD. Pity) So I took the liberty of booting in LINUX using the above-mentioned tools. Sure enough, bringing up Firefox allowed the hospital credentials to be entered and she was able to access her mail sites. Even after I removed the USB drive the live distro kept working with firefox (although not sure if anything else would work, or for how long). When I left however it was with the knowledge that I had made someone happy in place where happiness can't always be found. I will always take the small victories.
Once home I could feel the energy levels drop, as expected. Some soup for lunch then a nap. No supper till later, and no appetite of course, and more worrysome for me, I did not drink much water. Chemo pills at 9PM, some tv and sleep. Sleep was hard, the first night on the pump I always feel like I'm going to be sick. Finding a comfortable position was tough, but lying on my stomach seemed to alleviate the feelings of nausea. I don't recall this feeling from my first round, perhaps it's the lack of gall bladder exacerbating my already strange diet during chemo. Deep breathing helped a bit; perhaps that is why so many cancer patients turn to Yoga to help them cope. My weekly exercise class (now on hiatus til sometime in the new year) often introduces Yoga techniques, although my approach is more Yogi-Bear like. Still I remembered the walking through the clouds and another breathing exercise whose name escapes me. The breathing seemed to be the most effective, and eventually the nausea feelings subsided enough for me to sleep.
Sleep while wearing a 5FU pump for me is like a chicken and egg thing. In my first go-round of chemo I would remove the pump from the attached belt and place it on the nightstand. Invariably I would roll over causing the pump to thud to the ground and pull at my port, waking me up with a start (and an annoying pain, it's a 27" needle thats in me. Or something like that.) This time I keep the pump in the attached belt, leaving it on and shift it around me as I sleep. Of course I wake up every time I need to roll over, fear of crushing a bottle full of toxic fluids does that to me. So I gingerly maneuver the bottle like a mother hen watching her eggs. My sleep is not deep and restful, but that's what Saturday mornings are for. And Mondays when at work.
My sleep was troubled this first night with a recurring dream. It is the one that starts out with me staring in blackness, wondering when "it" will be all over. That's the bleakest of all my feelings, but strangely coupled with it is my choice for pall-bearers. Really, it's something I've thought about almost since I was diagnosed with Cancer. At first it really bothered me, later on I would actually think about it as it's a choice that needs to be made. I like to think I am a pragmatic person, 20 years ago I made the arrangements to pre-plan my funeral. That's all taken care of, no additional stress on those around me when that time comes. However I find the choice of pall bearers a significant one. I have two brothers and a brother-in-law on my side of the family. I have her brothers-in-law on her side of the family. And I have my life-long friends. I have my choices representing my family and friends. But here's where I feel uplifted: I have so many choices, so many people I can call true friends. I am truly comforted by this thought, and I sleep peacefully after that.
Well the second day of chemo coverage was without incident. Sleepy at times, hungry too, although mostly small meals. My throat was dry and I found I craved ice cream, that seemed to soothe it and no reactions from the lack of Gall Bladder were noted. Although the taste buds chose to make Hagen-Dazs ice cream taste a little off (more like Hagen-Daze) however it did the job. I managed to focus on some small tasks (like solving 143 tactical chess problems on Chess Tactics, 125 correctly, 4 mouse slips and the remainder were glaring oversights to my game. But I had fun.)
I was really tired thought and by midnight (after having the pre-sleep nap), I simply crashed, slept much better through the night and wasn't bothered by any non-optimistic dreams. Woke up to sunshine, had my pills (Zofran, Decadron and my EuroFer Iron supplement). The problem with all these pills is that they tend to bind me up, but lots of water, lots of raisin bran and flax seeds and more water and prunes helps. Stupid side effects of the medication.
There is still some soreness in my chest if I do even non-strenuous physical activity. In a day or so once the 5FU bottle is removed I should be fine however, and able to build chemo clock #10. I ran out of PCB boards, so step one is etch a whole new series. Usually I do 6 at a time, but the way things have been going I might have to increase that number. Who knew I would have an obsession with tube clocks!? But I do more than tube clocks, it's the Christmas season, so a LED-based xmas trees needed to be built:
The finished christmas tree project uses a PIC16F630 to make pretty lights blink on and off, on and off, on and off..ok you get the idea. I have LEDS and PCB's and time to make silly things that I enjoy.
Here's the back of the board, before drilling. One of the hardest parts of this project was cutting the shape of the PCB to the 'xmas tree' style. One day I'll get better at it I hope. This was a fun project, done just two days prior to my chemo. I spent a chunk of time programming until the wee hours, which might explain why I was so tired the day after!
Now it is Thursday, the last day of session #10, my pump scheduled to be removed this afternoon. The bottle is almost exhausted, but I feel much better now. My weight has gone down to 172.2lbs, but I was only 173.8lbs the day of chemo. I haven't been this weight since the 80's but my past experience tells me that once I'm off chemo I will gain weight rapidly and keep it on.
Now that I am free of my cytotoxic 5FU bottle, I can finally sleep soundly and indulge in the comfort of a shower (can only take a bath when wearing the pump). It's the little things in life which make such a difference in one's outlook. This tenth round of chemo was somewhat better than the prior two, no doubt as my body adjusts to being whacked with poison.
I made it through the process one more time, only two more sessions left. Then the CT scan in February and we'll see how effective my ongoing treatment has been. I don't really look for outcomes that far ahead, I endure what I need to endure, and make decisions when the facts are all assembled. I remain cautiously optimistic about return to my work, about returning to a 'regular' life.
So far I have hit all my milestones, have come through the chemos and the surgeries with the best possible outcomes, and remained positive and focused upon becoming healthy. My hope is that the New Year will bring me to a healthy conclusion of this ongoing battle. February will mark one year since the whole process started, with what was once a "routine" physical. Until then, I will enjoy life as best as I can.
Monday was sunny but oh-so cold; thankfully my down-filled jacket kept me warm, although I do tend to leave a trail of feathers everywhere I go. But let me ask you, if down feathers keep you so warm, why do all the bird fly south? However the bloodwork was done in a short time, and as I did not not receive any calls postponing my next-day appointment, Chemo #10 was on track.
Tuesday (it is a chronicle after all) December 14 I showed up at the Cancer Centre Pharmacy to get my 5FU pump. The pump was not ready again for the 3rd time in a row, but will be in time for me to go home. For as much that is discussed about the side-effects of the chemo, I find the pump to be what really drains me. But it's only for a few days, and since I did it before I can do it again. Only two more treatments after this (hopefully).
Chair #9 will be my chair for this session. With the AVASTIN in addtion to my 'regular' chemo medicine, I'm in it for almost 4 hours. Fortunately I have my trusty Acer Aspire Netbook beside me-for the past 9 months it is attached to me as close as my IV Port. I wonder if I should have a USB port installed in the same fashion as the IV Port! (don't laugh, there are people who are doing crazy implants like that!) Well I don't really want to become Borg-like, but without my electronic escape I really do feel lost.
The chemo process is goes off routinely: blood return ok, saline solution, chemo meds and avastin. Drip-by-drip over a four hour span. The two shots are administered immediately after my washroom breaks. This time however my IV pole had all good wheels; some of those poles act like they were shopping carts in a previous life (always one with a wobbly wheel).
Prior to chemo my breakfast is light, just some Special K and toast and banana. In the chemo chair I can't tell if it's hunger pangs or I'm going to get sick, the two feelings are both linked and constantly at war within me. My appetite is the loser however, and I barely eat anything but some soup and a few chicken nuggets when I get home. I had refused the kind offer from the Hospital for their lunch; I'm brave but not that brave. Oh, stereotypes of bad hospital food aside, ithe lunch is generally ok, but my tastebuds refuse to accept that what is on my tray is actually tasty. There's a wisdom that one does not eat one's favorite foods during chemo. Bland foods seem to be what I can stomach. In my early days of the chemo process I would sometimes wake up late at night with a craving, and would get up to satisfy that craving. Lately however I find I need to discipline myself to eat. Small meals, snacks throughout the day really, I don't eat 'three squares' anymore. (look up British naval history for the reference to 'three square meals', I believe it has to do with the wooden serving plates the men were given. But I digress) What bothers me more is that I find that I am not drinking liquids. My water glass, a fixture on the table next me remains untouched. I should be drinking a glass ever hour or two I think. Water just doesn't taste the same during chemo. Sometimes I squirt a little lemon juice into it, or supplant it with juices. But not all juices -anything like OJ or Tomato that is mildly acidic can be painful to drink during chemo, the whole mouth is sensitive. Make sure your toothbrush is EXTRA-extra-soft, for the bristles can irritate the gums. Forget flossing unless you enjoy the Steve Martin-Bill Murray dental scene from "Little Shop of Horrors". Remarkably though, once I've endured my 3 days of chemo within 24-48 hours my normal activities can be resumed. Were it not for the exrtemely cold weather (and me an ex Northern Ontario lad) I would be walking outside all the time. Oh and I learned my lesson about physical extertion during chemo time: Don't.
My chemo session was nearly over when a new patient sat down in the chair next to me. Her treatment was about to commence when she pulled out a laptop. A netbook really. She noticed I was using my netbook and came over to see if I was able to get on the internet. As I was happily surfing away, I assumed it was her connection. She asked if I wouldn't mind looking at her computer, and once I revealed my IT credentials she was so very pleased to have a 'tech suppport' guy right there. So now the pressure is on me to live up to my self-hype as an IT tech. Sure enough when I checked it out her IP was acquired by IE7 was not bringing up the login credentials page. I knew it worked earlier, as I was on my laptop (running LINUX, with Firefox. Remember that for later) So I did all the usual Windows things, cleared caches, reset security, the laying on of hands. Still nothing, I would actually observe the Cisco redirect, but IE7 stalwartly refused to display the page. I was running out of time as my session was now completed by this time and I really wanted to go home and rest. Still I had few more tricks up my sleeve; although I run LINUX as my primary OS, my netbook is dual boot (plus I had virtual box installed so I could run OpenBSD or Win2K if I really wanted to). But I booted up into XPHOME (same as the other netbook) and tried my IE7 out. Sure enough same issue. Oh Bother.
Plan B, where the B stands for reBoot. Back into linux, could the session authentication be down? Nope, I was in in a flash. A Flash drive would solve the problem, fortunately I happened to have a live linux distro on an SD card and a usb-attached card reader (acer's don't boot from SD. Pity) So I took the liberty of booting in LINUX using the above-mentioned tools. Sure enough, bringing up Firefox allowed the hospital credentials to be entered and she was able to access her mail sites. Even after I removed the USB drive the live distro kept working with firefox (although not sure if anything else would work, or for how long). When I left however it was with the knowledge that I had made someone happy in place where happiness can't always be found. I will always take the small victories.
Once home I could feel the energy levels drop, as expected. Some soup for lunch then a nap. No supper till later, and no appetite of course, and more worrysome for me, I did not drink much water. Chemo pills at 9PM, some tv and sleep. Sleep was hard, the first night on the pump I always feel like I'm going to be sick. Finding a comfortable position was tough, but lying on my stomach seemed to alleviate the feelings of nausea. I don't recall this feeling from my first round, perhaps it's the lack of gall bladder exacerbating my already strange diet during chemo. Deep breathing helped a bit; perhaps that is why so many cancer patients turn to Yoga to help them cope. My weekly exercise class (now on hiatus til sometime in the new year) often introduces Yoga techniques, although my approach is more Yogi-Bear like. Still I remembered the walking through the clouds and another breathing exercise whose name escapes me. The breathing seemed to be the most effective, and eventually the nausea feelings subsided enough for me to sleep.
Sleep while wearing a 5FU pump for me is like a chicken and egg thing. In my first go-round of chemo I would remove the pump from the attached belt and place it on the nightstand. Invariably I would roll over causing the pump to thud to the ground and pull at my port, waking me up with a start (and an annoying pain, it's a 27" needle thats in me. Or something like that.) This time I keep the pump in the attached belt, leaving it on and shift it around me as I sleep. Of course I wake up every time I need to roll over, fear of crushing a bottle full of toxic fluids does that to me. So I gingerly maneuver the bottle like a mother hen watching her eggs. My sleep is not deep and restful, but that's what Saturday mornings are for. And Mondays when at work.
My sleep was troubled this first night with a recurring dream. It is the one that starts out with me staring in blackness, wondering when "it" will be all over. That's the bleakest of all my feelings, but strangely coupled with it is my choice for pall-bearers. Really, it's something I've thought about almost since I was diagnosed with Cancer. At first it really bothered me, later on I would actually think about it as it's a choice that needs to be made. I like to think I am a pragmatic person, 20 years ago I made the arrangements to pre-plan my funeral. That's all taken care of, no additional stress on those around me when that time comes. However I find the choice of pall bearers a significant one. I have two brothers and a brother-in-law on my side of the family. I have her brothers-in-law on her side of the family. And I have my life-long friends. I have my choices representing my family and friends. But here's where I feel uplifted: I have so many choices, so many people I can call true friends. I am truly comforted by this thought, and I sleep peacefully after that.
Well the second day of chemo coverage was without incident. Sleepy at times, hungry too, although mostly small meals. My throat was dry and I found I craved ice cream, that seemed to soothe it and no reactions from the lack of Gall Bladder were noted. Although the taste buds chose to make Hagen-Dazs ice cream taste a little off (more like Hagen-Daze) however it did the job. I managed to focus on some small tasks (like solving 143 tactical chess problems on Chess Tactics, 125 correctly, 4 mouse slips and the remainder were glaring oversights to my game. But I had fun.)
I was really tired thought and by midnight (after having the pre-sleep nap), I simply crashed, slept much better through the night and wasn't bothered by any non-optimistic dreams. Woke up to sunshine, had my pills (Zofran, Decadron and my EuroFer Iron supplement). The problem with all these pills is that they tend to bind me up, but lots of water, lots of raisin bran and flax seeds and more water and prunes helps. Stupid side effects of the medication.
There is still some soreness in my chest if I do even non-strenuous physical activity. In a day or so once the 5FU bottle is removed I should be fine however, and able to build chemo clock #10. I ran out of PCB boards, so step one is etch a whole new series. Usually I do 6 at a time, but the way things have been going I might have to increase that number. Who knew I would have an obsession with tube clocks!? But I do more than tube clocks, it's the Christmas season, so a LED-based xmas trees needed to be built:
 |
| assembled LED xmas tree 16F630 style |
 | |
| blank PCB for xmas tree |
Here's the back of the board, before drilling. One of the hardest parts of this project was cutting the shape of the PCB to the 'xmas tree' style. One day I'll get better at it I hope. This was a fun project, done just two days prior to my chemo. I spent a chunk of time programming until the wee hours, which might explain why I was so tired the day after!
Now it is Thursday, the last day of session #10, my pump scheduled to be removed this afternoon. The bottle is almost exhausted, but I feel much better now. My weight has gone down to 172.2lbs, but I was only 173.8lbs the day of chemo. I haven't been this weight since the 80's but my past experience tells me that once I'm off chemo I will gain weight rapidly and keep it on.
Now that I am free of my cytotoxic 5FU bottle, I can finally sleep soundly and indulge in the comfort of a shower (can only take a bath when wearing the pump). It's the little things in life which make such a difference in one's outlook. This tenth round of chemo was somewhat better than the prior two, no doubt as my body adjusts to being whacked with poison.
I made it through the process one more time, only two more sessions left. Then the CT scan in February and we'll see how effective my ongoing treatment has been. I don't really look for outcomes that far ahead, I endure what I need to endure, and make decisions when the facts are all assembled. I remain cautiously optimistic about return to my work, about returning to a 'regular' life.
So far I have hit all my milestones, have come through the chemos and the surgeries with the best possible outcomes, and remained positive and focused upon becoming healthy. My hope is that the New Year will bring me to a healthy conclusion of this ongoing battle. February will mark one year since the whole process started, with what was once a "routine" physical. Until then, I will enjoy life as best as I can.
Thursday, December 9, 2010
Not toKnight dear, I have a headache . . .
Thus far writing my blog has proved to be therapy for me. I get to write about the biggest life-altering event in my 51 years and its effect upon how I live and view life. Since it's all about me, I can write whatever I wish. I wish to write about Chess.
Through the years Chess has meant for a me a passion, a hobby and lately a diversion to help me balance my thoughts about life. My earliest chess introduction stems from the legendary Bobby Fischer vs Boris Spassky world championship of 1972. Now almost 40 years later, this match is remembered not so much for its games but from the struggle of personalities associated with it. The mercurial Fischer has passed from icon to Mythic Figure to symbolize the lone chess genius able to defeat the world armed with nothing more than brains and desire and ego. It is a classic Horatio Alger story for the Chess world.
I played this game with single-minded pursuit in my youth, but by the time I left home at 18 the game and I had become distant. Years passed, and I played but rarely. Then with the Internet came the Great Online Gaming community. I learned that my hiatus from the game didn't interfere with my skills, as I quickly found out I had none. Also, playing opponents from around the world at 1AM is not optimum. I was rather disappointed; playing online is like playing against a computer (and sometimes the two are the same). Playing chess is a social sport, despite the perceived view that chess is for the 'socially distant' members of society.
After my initial round of chemotherapy finished, and just before my Liver surgery I found myself with some free time. A couple of things happened, one is I began to think about the upcoming surgery. I thought about it a lot. Unlike my first surgery, which was over in days, I had almost six weeks to contemplate the consequences of any failure. Worse, I had time to construct many many 'worst case' scenarios if the surgery went awry. Thinking of all those scenarios was not conducive to my mental and emotional health. Bike riding was a nice distraction, but a) it's hot out and b) I can't ride umpteen hours a day (yet). I needed a diversion that would let me enjoy my life and not allow me to think about the herd of tumours rampaging through my body.
The second thing is I found Chess, or perhaps it found me. The local Windsor Chess club was holding a series of weekend tournaments at the University of Windsor. So one fine sunny Saturday morning, I sauntered (because people would think it odd if I sashayed... ) off to the tournament site. I met the Tournament Director, a very nice fellow who of course encouraged me to join. Since I was looking for a casual game, the stress of a tournament wasn't exactly what I needed. I was curious to see how tournaments were run, and the calibre of the games.
What I found was that the veteran players are very, very good. Master class, way out of my league. But the real surprise were the kids: they are serious about the game and absolutely fierce competitors! I had an opportunity to play one young man, say 10 years old just before the tournament started. He beat me. I lost so badly to him that I wasn't even embarrassed, merely astonished at how good a 'small child' could be. He was gracious in his win, we shook hands in the gentlemanly way, and he kindly offered to play me again. This time I didn't play him like a kid. I admired the way he hung on, hoping for a stalemate as I crushed him, taking all of his pieces leaving him with only a king and no chance to win. My victory against a 10 year old only showed how much I didn't know about this damn game!
Having one's technical (in)abilities highlighted by a child, even an exceptionally gifted one, is mildly ego-deflating, to say the least. I would hang out at subsequent chess tournaments, watching, occasionally playing in the skittles room (ie. the room where non-serious chess may be played) and mostly losing. But I had achieved my objective; by playing chess I had engaged in an activity which distracted me from my surgery, my cancer and worrying about life.
Through the remainder of the summer until the time of my surgery I would venture forth to the local chess club, playing and mostly losing. In the months after surgery, I would attempt to learn in a more diligent manner, but the second round of chemo would throw me for a loop on occasion. Not exactly chemo brain but concentration was difficult. Apparently the ability to concentrate is a necessary aspect to play good chess...hmmm
With the successful completion of my surgery I realized I still wanted to play chess. Given my dismal record against 10-year-olds, I better give some thought to actually studying the game. Learning is hard, but you have to be alive to learn. The payoff though is not winning or losing a chess game, but the realization that Cancer be damned, I can still do something challenging, can still accomplish reasonable goals, and most importantly, have some fun with my life.
Through the years Chess has meant for a me a passion, a hobby and lately a diversion to help me balance my thoughts about life. My earliest chess introduction stems from the legendary Bobby Fischer vs Boris Spassky world championship of 1972. Now almost 40 years later, this match is remembered not so much for its games but from the struggle of personalities associated with it. The mercurial Fischer has passed from icon to Mythic Figure to symbolize the lone chess genius able to defeat the world armed with nothing more than brains and desire and ego. It is a classic Horatio Alger story for the Chess world.
I played this game with single-minded pursuit in my youth, but by the time I left home at 18 the game and I had become distant. Years passed, and I played but rarely. Then with the Internet came the Great Online Gaming community. I learned that my hiatus from the game didn't interfere with my skills, as I quickly found out I had none. Also, playing opponents from around the world at 1AM is not optimum. I was rather disappointed; playing online is like playing against a computer (and sometimes the two are the same). Playing chess is a social sport, despite the perceived view that chess is for the 'socially distant' members of society.
After my initial round of chemotherapy finished, and just before my Liver surgery I found myself with some free time. A couple of things happened, one is I began to think about the upcoming surgery. I thought about it a lot. Unlike my first surgery, which was over in days, I had almost six weeks to contemplate the consequences of any failure. Worse, I had time to construct many many 'worst case' scenarios if the surgery went awry. Thinking of all those scenarios was not conducive to my mental and emotional health. Bike riding was a nice distraction, but a) it's hot out and b) I can't ride umpteen hours a day (yet). I needed a diversion that would let me enjoy my life and not allow me to think about the herd of tumours rampaging through my body.
The second thing is I found Chess, or perhaps it found me. The local Windsor Chess club was holding a series of weekend tournaments at the University of Windsor. So one fine sunny Saturday morning, I sauntered (because people would think it odd if I sashayed... ) off to the tournament site. I met the Tournament Director, a very nice fellow who of course encouraged me to join. Since I was looking for a casual game, the stress of a tournament wasn't exactly what I needed. I was curious to see how tournaments were run, and the calibre of the games.
What I found was that the veteran players are very, very good. Master class, way out of my league. But the real surprise were the kids: they are serious about the game and absolutely fierce competitors! I had an opportunity to play one young man, say 10 years old just before the tournament started. He beat me. I lost so badly to him that I wasn't even embarrassed, merely astonished at how good a 'small child' could be. He was gracious in his win, we shook hands in the gentlemanly way, and he kindly offered to play me again. This time I didn't play him like a kid. I admired the way he hung on, hoping for a stalemate as I crushed him, taking all of his pieces leaving him with only a king and no chance to win. My victory against a 10 year old only showed how much I didn't know about this damn game!
Having one's technical (in)abilities highlighted by a child, even an exceptionally gifted one, is mildly ego-deflating, to say the least. I would hang out at subsequent chess tournaments, watching, occasionally playing in the skittles room (ie. the room where non-serious chess may be played) and mostly losing. But I had achieved my objective; by playing chess I had engaged in an activity which distracted me from my surgery, my cancer and worrying about life.
Through the remainder of the summer until the time of my surgery I would venture forth to the local chess club, playing and mostly losing. In the months after surgery, I would attempt to learn in a more diligent manner, but the second round of chemo would throw me for a loop on occasion. Not exactly chemo brain but concentration was difficult. Apparently the ability to concentrate is a necessary aspect to play good chess...hmmm
With the successful completion of my surgery I realized I still wanted to play chess. Given my dismal record against 10-year-olds, I better give some thought to actually studying the game. Learning is hard, but you have to be alive to learn. The payoff though is not winning or losing a chess game, but the realization that Cancer be damned, I can still do something challenging, can still accomplish reasonable goals, and most importantly, have some fun with my life.
Saturday, December 4, 2010
The Chemo Chronicles - Part IX
My ninth chemotherapy session was December 1st. The day started with soft puffy snowflakes. Recollection of Christmas' in Northern Ontario brought back fond memories of playing in the snow as a kid. Even to this day, a snowfall can still get me out into the back yard and return to the days of making snow animals
However the snowflakes didn't stay around very long, but did put me in good spirits. As in every prior session, I login to the registration computer, pick up my 5FU pump (oops, not ready yet...) and in this case, picked up refills for my chemo meds. I wear Mr. Pager until such time as my chair is ready. Soon enough I am once more in a position where I feel great coming in and just mediocre when I leave. I explain to my nurse that the last 5FU bottle removal did not have a successful blood return after my visit two weeks prior. I fully expected to have a lengthy session to simply get the blood return thingy working, but was pleasantly surprised when my nurse was able to get it working on the first try!
I seem to be the only person who ever brings a laptop to these sessions. Many however have their headphones on, books and magazines are always present, and there are caregivers for almost all the patients. Almost all patients, as some are solitary. Sometimes it's just as hard on the caregiver to be there, the support role now usurped by the professionals. For some it is hard to watch a loved one undergo the process. Fortunately for me I am not alone. Sometimes we talk to the other patients, encourage each other, put on our brave face and confidently face down our fears. We are all veteran of the Cancer Wars. I have always said that Cancer may kill me, but it won't beat me. I believe in those words as I believe in myself.
Returning to the laptop, my virtual escape from the chair is aided by my trusty Acer Aspire One Netbook. Free WiFI for us patients allows me to write in my journal, to keep in contact with my family, friends and coworkers, heck I even wrote some shell and Awk scripts for a friend of mine who wanted to move specific files from one directory to another on his computer. He was most amazed I was writing them from the chemo chair. Programming from the chemo chair, with an IV hooked up to my port. Plus I get free coffee and cookies if I want, but alas, during these times I have absolutely no desire for either.
It seems that the longer I sit in the chair the less my attention span can be maintained. Of course my nemesis returns each time I have chemo, and for that I have the two shots to take care of the nausea symptoms. My chemo treatment is more or less routine this time, however I now receive my first session of Avastin, the magic potion to inhibit new growth of blood vessels, so tumours can't find a source of nutrients. I was quite eager for this, due to the word 'AVAST' in Avasatin. AVAST of course is Pirate Talk! Arrrrgghhh Matey, it's now time for Bad Pirate Puns.
Prior to this session I had constructed and pre-tested some of my Pirate Puns on a few unsuspecting individuals. I was actually considering finding a suitable hat, eye patch and parrot, but decorum and common sense won out. Fortunately the Pirate Puns were more-or-less well received:
"I'm a land-locked pirate, the closest I get to the High Seas is me Orange Juice!"
"Avastin! That's Pirate Chemo, delivered by me nurse with the wooden leg, Peg!"
"We're Practical Joke Pirates! Prepare to walk the prank!"
"I get all me Pirate boots and shoes from Davey Jones Foot Locker....arrrgghh!"
When the opportunity presents itself to find humour in the horrible, you go for the humour ever time. Besides, I'm a glutton for PUNishment...
My session was relatively uneventful, save for the spate of bad puns. I tried to indulge in the Hospital-provided lunch (chicken noodle soup and chicken salad sandwich, peaches for dessert) but my appetite was simply not there. Tired as I usually am after these sessions, I basically get home and sleep. It seems to me that my past two chemo sessions have taken more of a toll on me than the first round, whether it is due to the surgery, the extended time between sessions or simply the weather and my own mood, I simply don't know.
My mood the day after chemo wasn't too bad. I was up fairly early and content to do my morning routine of email and surfing, when suddenly my iternet at home vanished. Terry the Techie now took over. I checked out my DSL modem, my router, my wifi...no sync. I contacted my ISP, and I tried a different modem. Still no sync. A technician was sent over and he confirmed it: No Sync! So now Bell is involved and a day later after all their tests they managed to actually unhook my telephone line altogether! So now I had no DSL sync and no voice. My ISP was quick to work through the problem with Bell, and several hours before I was due to have my 5FU pump removed, a Bell truck rolled up to my house.
Inside wiring was ok, but the wiring on the pole was bad. Squirrels eating the insulation on the lines is the official reason. However there was a matter of the voice being left unconnected at the remote site after testing my line for DSL sync. However once the new cable was strung from the telephone pole to my house, the magic of the internet returned, and with it, my telephone circuits. One of the first things I did was to check my voice mail box...which had a message from Bell repair to call them..
So for a day and a half I was disconnected from the rest of the world, and I didn't mind it a bit! All that activity in problem-solving mode did not involve anything to do with the Cancer, and I felt like I was doing something useful. That Friday was very busy, for earlier that morning I had a service tech come over to the house to perform routine maintenance on my old, old furnace. My neighbors Carbon Monoxide detector had recently gone off and they needed to get their furnace replaced. I don't even own a CO detector - yet. As soon as I can get out of the house I'm heading to Canadian Tire to pick one up, stat! Oh, and my 30 year old furnace was tested and is fine, no CO leaks, and while not efficient as modern ones, still heats the house up nice and cozy.
As the day flew by, all the excitement from the comings and goings of the various technicians was wearing on me. I was tired, but my 5FU pump still was scheduled for removal at 2PM that afternoon. No nap for me. Off to the clinic to have the pump removed. This time it was a breeze, no problem with the blood return, a record time of 15 minutes from start to finish. Finally I could have my well-deserved nap later that afternoon. And I did!
Six hours after the pump was removed and an hour long nap seemed to provide me with a bit of energy. I went for a walk, just to the local mail box. A trip that would routinely take me 10 minutes there and back. In the past I have commented that a recurring side-effect of the chemo medication are sore chest and arms after exertion. I know from first-hand experience that any prolonged physical exertion like walking causes me chest pain. Not the stabbing I'm-having-a-heart-attack, nor the heart-pounding likes it's going to explode, no this is like a compression on the heart. It's sore, and my arms around my biceps get sore as well. So for me to walk that distance and not expect repercussions was just plain stupid. And I paid for that stupidity. The walk there was not too bad, it was the return trip. Walk a few steps, feel sore, feel sick, stop, crouch down, wait. Repeat. I shuffled more than I walked. My chest was sore, I was frustrated with my body's inability to cope and angry at myself for being so stupid. A mere six hours had passed since the pump was removed from me, I know I need at least 24 to feel 'better'.
The walk continued, more shuffling, more rest stops. Ten minutes turned to 20, then almost 30, for a trip that would normally take me five minutes. I wanted to get sick. I wanted nothing more than to lie down on someones yard and rest. It was dark and cold out and stupid me was clutching at my chest, shuffling along, randomly crouching down to rest. If someone was watching me they would think that I was having an early start on the Christmas Cheer. I made it home and as I got inside the house, I just sat on the basement steps for minutes trying not to cry from the pain. The rest of the evening was extremely low-key to say the least. I had yet another nap, only waking up to take my last chemo pill of the 3-day regimen.
What had started off as a pleasant morning three days prior almost ended in disaster. My ego overrode my experience, and I paid the price for it in pain. This ninth session will be remembered more for what I should NOT have done, in this case it would be to not exert myself until I am fully recovered from my session. The journey will continue, but perhaps at a more sedate pace.
 | |
| Mr. Bunny, meet Mr. Squirrel |
I seem to be the only person who ever brings a laptop to these sessions. Many however have their headphones on, books and magazines are always present, and there are caregivers for almost all the patients. Almost all patients, as some are solitary. Sometimes it's just as hard on the caregiver to be there, the support role now usurped by the professionals. For some it is hard to watch a loved one undergo the process. Fortunately for me I am not alone. Sometimes we talk to the other patients, encourage each other, put on our brave face and confidently face down our fears. We are all veteran of the Cancer Wars. I have always said that Cancer may kill me, but it won't beat me. I believe in those words as I believe in myself.
Returning to the laptop, my virtual escape from the chair is aided by my trusty Acer Aspire One Netbook. Free WiFI for us patients allows me to write in my journal, to keep in contact with my family, friends and coworkers, heck I even wrote some shell and Awk scripts for a friend of mine who wanted to move specific files from one directory to another on his computer. He was most amazed I was writing them from the chemo chair. Programming from the chemo chair, with an IV hooked up to my port. Plus I get free coffee and cookies if I want, but alas, during these times I have absolutely no desire for either.
It seems that the longer I sit in the chair the less my attention span can be maintained. Of course my nemesis returns each time I have chemo, and for that I have the two shots to take care of the nausea symptoms. My chemo treatment is more or less routine this time, however I now receive my first session of Avastin, the magic potion to inhibit new growth of blood vessels, so tumours can't find a source of nutrients. I was quite eager for this, due to the word 'AVAST' in Avasatin. AVAST of course is Pirate Talk! Arrrrgghhh Matey, it's now time for Bad Pirate Puns.
Prior to this session I had constructed and pre-tested some of my Pirate Puns on a few unsuspecting individuals. I was actually considering finding a suitable hat, eye patch and parrot, but decorum and common sense won out. Fortunately the Pirate Puns were more-or-less well received:
"I'm a land-locked pirate, the closest I get to the High Seas is me Orange Juice!"
"Avastin! That's Pirate Chemo, delivered by me nurse with the wooden leg, Peg!"
"We're Practical Joke Pirates! Prepare to walk the prank!"
"I get all me Pirate boots and shoes from Davey Jones Foot Locker....arrrgghh!"
When the opportunity presents itself to find humour in the horrible, you go for the humour ever time. Besides, I'm a glutton for PUNishment...
My session was relatively uneventful, save for the spate of bad puns. I tried to indulge in the Hospital-provided lunch (chicken noodle soup and chicken salad sandwich, peaches for dessert) but my appetite was simply not there. Tired as I usually am after these sessions, I basically get home and sleep. It seems to me that my past two chemo sessions have taken more of a toll on me than the first round, whether it is due to the surgery, the extended time between sessions or simply the weather and my own mood, I simply don't know.
My mood the day after chemo wasn't too bad. I was up fairly early and content to do my morning routine of email and surfing, when suddenly my iternet at home vanished. Terry the Techie now took over. I checked out my DSL modem, my router, my wifi...no sync. I contacted my ISP, and I tried a different modem. Still no sync. A technician was sent over and he confirmed it: No Sync! So now Bell is involved and a day later after all their tests they managed to actually unhook my telephone line altogether! So now I had no DSL sync and no voice. My ISP was quick to work through the problem with Bell, and several hours before I was due to have my 5FU pump removed, a Bell truck rolled up to my house.
Inside wiring was ok, but the wiring on the pole was bad. Squirrels eating the insulation on the lines is the official reason. However there was a matter of the voice being left unconnected at the remote site after testing my line for DSL sync. However once the new cable was strung from the telephone pole to my house, the magic of the internet returned, and with it, my telephone circuits. One of the first things I did was to check my voice mail box...which had a message from Bell repair to call them..
So for a day and a half I was disconnected from the rest of the world, and I didn't mind it a bit! All that activity in problem-solving mode did not involve anything to do with the Cancer, and I felt like I was doing something useful. That Friday was very busy, for earlier that morning I had a service tech come over to the house to perform routine maintenance on my old, old furnace. My neighbors Carbon Monoxide detector had recently gone off and they needed to get their furnace replaced. I don't even own a CO detector - yet. As soon as I can get out of the house I'm heading to Canadian Tire to pick one up, stat! Oh, and my 30 year old furnace was tested and is fine, no CO leaks, and while not efficient as modern ones, still heats the house up nice and cozy.
As the day flew by, all the excitement from the comings and goings of the various technicians was wearing on me. I was tired, but my 5FU pump still was scheduled for removal at 2PM that afternoon. No nap for me. Off to the clinic to have the pump removed. This time it was a breeze, no problem with the blood return, a record time of 15 minutes from start to finish. Finally I could have my well-deserved nap later that afternoon. And I did!
Six hours after the pump was removed and an hour long nap seemed to provide me with a bit of energy. I went for a walk, just to the local mail box. A trip that would routinely take me 10 minutes there and back. In the past I have commented that a recurring side-effect of the chemo medication are sore chest and arms after exertion. I know from first-hand experience that any prolonged physical exertion like walking causes me chest pain. Not the stabbing I'm-having-a-heart-attack, nor the heart-pounding likes it's going to explode, no this is like a compression on the heart. It's sore, and my arms around my biceps get sore as well. So for me to walk that distance and not expect repercussions was just plain stupid. And I paid for that stupidity. The walk there was not too bad, it was the return trip. Walk a few steps, feel sore, feel sick, stop, crouch down, wait. Repeat. I shuffled more than I walked. My chest was sore, I was frustrated with my body's inability to cope and angry at myself for being so stupid. A mere six hours had passed since the pump was removed from me, I know I need at least 24 to feel 'better'.
The walk continued, more shuffling, more rest stops. Ten minutes turned to 20, then almost 30, for a trip that would normally take me five minutes. I wanted to get sick. I wanted nothing more than to lie down on someones yard and rest. It was dark and cold out and stupid me was clutching at my chest, shuffling along, randomly crouching down to rest. If someone was watching me they would think that I was having an early start on the Christmas Cheer. I made it home and as I got inside the house, I just sat on the basement steps for minutes trying not to cry from the pain. The rest of the evening was extremely low-key to say the least. I had yet another nap, only waking up to take my last chemo pill of the 3-day regimen.
What had started off as a pleasant morning three days prior almost ended in disaster. My ego overrode my experience, and I paid the price for it in pain. This ninth session will be remembered more for what I should NOT have done, in this case it would be to not exert myself until I am fully recovered from my session. The journey will continue, but perhaps at a more sedate pace.
Saturday, November 27, 2010
The Chemo Chronicles - Part VIII
Tuesday November 16th was a sunny and mild day, weather-wise. Chemotherapy day. I had prepared myself for my upcoming session by taking my pre-chemo pills of Zofran and Decadron. I made sure that the sticky tape that would soon cling to my chest would be in contact only with a smooth surface. Of all the medical manhandling I have gone through, pulling clumps of hair off my chest when removing old tape is the worst. I may not have a lot of insight to the whole process but I urge any guy going through something similar to shave first and thank me later. With the preliminary at-home maintenance completed, I was off to the Windsor Regional Cancer Centre one more time.
I'm too young to suffer from Alzheimers (I hope) and with only seven prior chemotherapy sessions, I shouldn't have chemo brain. Yet there I was at a computer terminal at the Cancer Centre, vainly trying to recall my password to begin the registration process. I had done this on seven prior occasions, and it was only three months since I had last performed this minor task. Two of the yellow-coat-wearing volunteers were spotted. Easily 20 years my senior, I humbly ask them how to log in to the terminal. With bright smiles and small words they patiently explained to me the login process. They've done this a thousand times before, and are very well versed in working with those that may be technology-challenged. I on the other hand work in IT. I'm supposedly a technology-savvy person. I'm supposed to be a GEEK for cryin' out loud! Passwords are my lifeblood, I use dozens of them daily when I'm at work. I change them at strange intervals, I use arcane and obscure trivia to obfuscate their creation and pride myself on making strong and secure passwords. Therefore it is very ego-deflating that I should require technical assistance for the very thing that I myself provided in my past life.
Well it wasn't long after we got the password figured out that I was able to complete the registration process. With paperwork in hand I wander over to the receptionist who gives me a pager. These pagers are the kind with lots of flashing lights and vibrating effects, the type that are handed out by the hostess of an Applebees to let customers know when their tables are ready. Unfortunately when this pager goes off my waitress turns out to be a chemo nurse, and the only cocktail she's serving is chemical.
Chair #12 and I are acquainted from my past visits. Our mutual friend, my wonderful chemo Nurse starts setting up for what will become my eighth chemotherapy session. Being once more in the chair after so long an absence brings about a strange feeling of excitement and nervousness. Then more nervousness as I realize I'm sweating. I realize that I had forgotten to put on my deodorant that morning. Of all the things to forget. At least I remembered to wear pants. Fortunately it's not too hot in the room and I don't have to worry about offending anyone ( I hope). I'm frantically going through my mental checklist of all the things I need to be doing during the next few days of my chemo when the sound of the IV pole being wheeled up to the chair shifts my focus to events around me. I'm being asked to unbutton my shirt, the process is about to begin - one little pinprick and the needle slides through the skin covering my port. I'm hooked up and the meter is ticking as the magic cancer-killing concoction drips into my veins.
This is not so bad, I'm comfortable, no longer nervous and my laptop is on the 'net courtesy of the 'Guest Access' wifi. Because this session is only eight weeks after my big surgery, I will not be given Avastin this time. My session will take me past noon however. In the meantime I settle into my surprisingly comfortable chair. These chairs recline, they are heated I believe, and are padded quite well. My session proceeds as it had in the past, the body remembers what it did last time, even if my brain doesn't! As I had done in prior sessions, a magic needle given to me stopped the nausea feelings. Two needles, injected in the muscle, one per arm and most of the uncomfortable feelings disappear.
It was past noon when I was finally untangled from the IV Pole and it's array of now-empty bags. A complimentary lunch showed up just then: mushroom soup, tea, juice and an Egg Salad Sandwich. I like egg salad. Except I make mine in the Northern Ontario way: using Miracle Whip instead of Mayo. Thus whenever I bite into an E.S.S. made anywhere else, I'm disappointed. I miss the tang of the Miracle Whip. This particular hospital-cafeteria provided E.S.S. was no exception, but as I was hungry I ate it anyway. Later that night I would come to regret that decision. A regret that would last through the next week. Unfortunately I would form an almost Pavlovian trigger between Egg Salad and certain other actions.
Just prior to my lunch, the final chemo process of installing the 5FU pump was performed. My 48-hour friend was secured to my IV Port and my eighth chemotherapy session was well and truly on its way. The session would be considered complete when the pump was removed two days later. In the meantime I had to make sure I would take my meds at the proper times. I would miss the final pill on the final day, but overall I did pretty much everything I needed to do for the chemo process to work. Now that I was wearing the pump my energy level went way down, as expected and I would find that the old sensations of sore chest and arms would return when I did even mild physical activities. Napping and watching tv were the highlight of my 'daze of chemo'.
I stoically endured the nausea feelings, occasionally popping an anti-nausea pill. This managed to stave off most of the unpleasantness of the initial chemo barrage, but alas for me, it was incomplete. Trying to sleep I was roused after midnight by soreness in my chest. I coudn't get comfortable. I hurt. I was also thinking of the Egg Salad Sandwich I had some 12 hours prior.....
When I returned to bed, I was considerably relieved, somewhat lighter, and the chest soreness virtually gone. Perhaps the lack of a Gall Bladder also exacerbated the chemo+ESS issue, but from that point on for the next week or so, even the thought of Egg Salad would cause me to gag. I can eat scrambled eggs fine however. Weird.
I can report that after this solitary bout of nausea I was successful in avoiding the majority of my other annoying side effects. The days passed, I was not losing weight, eating was not problematic, but drinking water was. I needed to supplement the water with juices and ginger ale (Canada Dry, eh). Water never seemed to satisfy the palette but I just had to force myself to drink. Dehydration is not a good thing.
At the appointed time I went to see the folks at the clinic who would take care of removing my 5FU bottle. This turned out to be the most interesting part of my chemo session for a couple of reasons.
One reason was that a senior nurse was instructing a junior nurse (terms are relative of experience, not age!) on how to properly remove the 5FU pump. Not a problem, I don't mind being the teaching dummy.
The other reason was due to my blood return not working. Again. This is turning out to be an annoying and ongoing issue. As the clinic I was at does not have the same technical resources to deliver the chemo equivalent of 'Liquid Plumbr' to unclog whatever was clogging me up, a more energetic approach was tried.
The typical approach involves turning ones head and coughing. Or raising the arm on the same side as the Port while coughing. The flush of the port has always worked, they just can't bring back any blood (and when they do they nicely put it back in again!) I started feeling sorry for the two nurses as heroic measures and experiences and tricks-of-the-trade were applied. What typically is a half-hour process extended to over two hours. In the end I was sent back to the Cancer Centre bearing documents that attested to the fact that this well was a dry hole. Hopefully there's no dynamiting in my future. The removal of the pump officially completed Chemo Session #8 for me. Only four more to go after this.
Aside from the no blood return thing and the ESS incident, my session was remarkably boring. I was even able to begin drilling a PCB that will constitute Chemo Clock #8. My life is boring. My life continues, how great is that!
I'm too young to suffer from Alzheimers (I hope) and with only seven prior chemotherapy sessions, I shouldn't have chemo brain. Yet there I was at a computer terminal at the Cancer Centre, vainly trying to recall my password to begin the registration process. I had done this on seven prior occasions, and it was only three months since I had last performed this minor task. Two of the yellow-coat-wearing volunteers were spotted. Easily 20 years my senior, I humbly ask them how to log in to the terminal. With bright smiles and small words they patiently explained to me the login process. They've done this a thousand times before, and are very well versed in working with those that may be technology-challenged. I on the other hand work in IT. I'm supposedly a technology-savvy person. I'm supposed to be a GEEK for cryin' out loud! Passwords are my lifeblood, I use dozens of them daily when I'm at work. I change them at strange intervals, I use arcane and obscure trivia to obfuscate their creation and pride myself on making strong and secure passwords. Therefore it is very ego-deflating that I should require technical assistance for the very thing that I myself provided in my past life.
Well it wasn't long after we got the password figured out that I was able to complete the registration process. With paperwork in hand I wander over to the receptionist who gives me a pager. These pagers are the kind with lots of flashing lights and vibrating effects, the type that are handed out by the hostess of an Applebees to let customers know when their tables are ready. Unfortunately when this pager goes off my waitress turns out to be a chemo nurse, and the only cocktail she's serving is chemical.
Chair #12 and I are acquainted from my past visits. Our mutual friend, my wonderful chemo Nurse starts setting up for what will become my eighth chemotherapy session. Being once more in the chair after so long an absence brings about a strange feeling of excitement and nervousness. Then more nervousness as I realize I'm sweating. I realize that I had forgotten to put on my deodorant that morning. Of all the things to forget. At least I remembered to wear pants. Fortunately it's not too hot in the room and I don't have to worry about offending anyone ( I hope). I'm frantically going through my mental checklist of all the things I need to be doing during the next few days of my chemo when the sound of the IV pole being wheeled up to the chair shifts my focus to events around me. I'm being asked to unbutton my shirt, the process is about to begin - one little pinprick and the needle slides through the skin covering my port. I'm hooked up and the meter is ticking as the magic cancer-killing concoction drips into my veins.
This is not so bad, I'm comfortable, no longer nervous and my laptop is on the 'net courtesy of the 'Guest Access' wifi. Because this session is only eight weeks after my big surgery, I will not be given Avastin this time. My session will take me past noon however. In the meantime I settle into my surprisingly comfortable chair. These chairs recline, they are heated I believe, and are padded quite well. My session proceeds as it had in the past, the body remembers what it did last time, even if my brain doesn't! As I had done in prior sessions, a magic needle given to me stopped the nausea feelings. Two needles, injected in the muscle, one per arm and most of the uncomfortable feelings disappear.
It was past noon when I was finally untangled from the IV Pole and it's array of now-empty bags. A complimentary lunch showed up just then: mushroom soup, tea, juice and an Egg Salad Sandwich. I like egg salad. Except I make mine in the Northern Ontario way: using Miracle Whip instead of Mayo. Thus whenever I bite into an E.S.S. made anywhere else, I'm disappointed. I miss the tang of the Miracle Whip. This particular hospital-cafeteria provided E.S.S. was no exception, but as I was hungry I ate it anyway. Later that night I would come to regret that decision. A regret that would last through the next week. Unfortunately I would form an almost Pavlovian trigger between Egg Salad and certain other actions.
Just prior to my lunch, the final chemo process of installing the 5FU pump was performed. My 48-hour friend was secured to my IV Port and my eighth chemotherapy session was well and truly on its way. The session would be considered complete when the pump was removed two days later. In the meantime I had to make sure I would take my meds at the proper times. I would miss the final pill on the final day, but overall I did pretty much everything I needed to do for the chemo process to work. Now that I was wearing the pump my energy level went way down, as expected and I would find that the old sensations of sore chest and arms would return when I did even mild physical activities. Napping and watching tv were the highlight of my 'daze of chemo'.
I stoically endured the nausea feelings, occasionally popping an anti-nausea pill. This managed to stave off most of the unpleasantness of the initial chemo barrage, but alas for me, it was incomplete. Trying to sleep I was roused after midnight by soreness in my chest. I coudn't get comfortable. I hurt. I was also thinking of the Egg Salad Sandwich I had some 12 hours prior.....
When I returned to bed, I was considerably relieved, somewhat lighter, and the chest soreness virtually gone. Perhaps the lack of a Gall Bladder also exacerbated the chemo+ESS issue, but from that point on for the next week or so, even the thought of Egg Salad would cause me to gag. I can eat scrambled eggs fine however. Weird.
I can report that after this solitary bout of nausea I was successful in avoiding the majority of my other annoying side effects. The days passed, I was not losing weight, eating was not problematic, but drinking water was. I needed to supplement the water with juices and ginger ale (Canada Dry, eh). Water never seemed to satisfy the palette but I just had to force myself to drink. Dehydration is not a good thing.
At the appointed time I went to see the folks at the clinic who would take care of removing my 5FU bottle. This turned out to be the most interesting part of my chemo session for a couple of reasons.
One reason was that a senior nurse was instructing a junior nurse (terms are relative of experience, not age!) on how to properly remove the 5FU pump. Not a problem, I don't mind being the teaching dummy.
The other reason was due to my blood return not working. Again. This is turning out to be an annoying and ongoing issue. As the clinic I was at does not have the same technical resources to deliver the chemo equivalent of 'Liquid Plumbr' to unclog whatever was clogging me up, a more energetic approach was tried.
The typical approach involves turning ones head and coughing. Or raising the arm on the same side as the Port while coughing. The flush of the port has always worked, they just can't bring back any blood (and when they do they nicely put it back in again!) I started feeling sorry for the two nurses as heroic measures and experiences and tricks-of-the-trade were applied. What typically is a half-hour process extended to over two hours. In the end I was sent back to the Cancer Centre bearing documents that attested to the fact that this well was a dry hole. Hopefully there's no dynamiting in my future. The removal of the pump officially completed Chemo Session #8 for me. Only four more to go after this.
Aside from the no blood return thing and the ESS incident, my session was remarkably boring. I was even able to begin drilling a PCB that will constitute Chemo Clock #8. My life is boring. My life continues, how great is that!
Wednesday, November 24, 2010
Rebuilding - Part II
It's now near the end of October, 2010 and my story thus far has me recovering from Liver surgery. My old energies are returning, and as always pointed out to me on numerous occasions, I had MAJOR SURGERY less than six weeks ago! My expectations that I should recovery "soon" are simply not going to be met. Patience heals just as well as frustration, and can be somewhat more relaxing. The end of the month sees me visiting my Oncologist for the first time since my surgery, and we discuss What Happens Next.
What Happens Next is simple: more chemo. The resolution of the CT devices can't show tumours under a certain size. As a precaution I am scheduled for five more rounds of chemotherapy. It turns out that the effectiveness of chemotherapy diminishes with continuous usage, with 12 sessions being classed as 'best bang for buck'. Personally I am all for arming my white blood cells with high-tech lasers and plasma guns and whacking the cancer cells in hand-to-hand ("flagella to flagella?") combat. Until that happens chemo is my route.
Since I had seven session prior to my liver surgery, I can "only" have five more using this current suite of drugs. Should I require further treatment, other drugs would be substituted and chemo would continue with those. Hopefully this will not be necessary. My next round of chemotherapy would commence Tuesday, November 16th of this year. Once more I had a plan, and I could continue on with life.
Before I could have chemo though, I needed to have my IV Port flushed. Seems that after chemo #7 the blood return wasn't returning. So I had a session in the chemo chair where coughing, agitation and tap-dancing routines were attempted in order to cause the blood return to work. Since my high-tech flapping-about failed, the heavy artillery were called in: chemical equivalents of Liquid Plumbr and the Roto Rooter guy were used. About an hour later the blood return was checked and yes, I had blood. Life is good.
The interval between my Oncologist visit and eighth chemo session is about three weeks, so I had some 'free' time on my hands. I made darn sure I got in my walking / bike riding / chess playing and any other 'Terry' activities I could before being whacked by chemo. In particular I celebrate Halloween, usually by sacrificing a pumpkin. Or two. Or in this case about 7. Prior to my surgery friends of mine decided my barren front porch could use some dressing up, so they showed up with 10 or so bright orange pumpkins and took the liberty of my not being home to 'decorate' the front steps.
Since I was only able to give about three of the damn things away, I was left with a mound of pumpkins. No, I do not care for pumpkin pie either!
I do not like pumpkin pie,
In the Pie Canon there are only the following Holy Pastries:
Blueberry, Apple, Peach, Cherry, and more Blueberry
Pie digression aside, I am now left with numerous pumpkins and Halloween is right around the corner. One Jack-O-Lantern is plenty, seven is just a lot of work. So I decided to make my "Pumpkin-O-pede"
A work of art (and if I were Art I'd change my name...)
Halloween was quiet and cold, only about 30 kids showed up. Guess it was up to me to finish off the left-over candy. Which really was unfortunate timing, as I had decided to make a dental appointment before I started chemo again. Yet another medical appointment forthcoming...
Oral health can actually be quite critical during the treatment process. Effects of treatment can alter taste perceptions, and cause mouth sores which provide a vector for bacteria to enter the body. Negative fun. Due to sensitivity of the mouth and gums, alcohol mouth washes are verboten, the normal practice is to rinse with baking soda dissolved in warm salt water. Flossing can be dangerous during the treatment time as well, simply because of cuts to the gum. I had missed my last Dental appointment since it as in the middle of my last round of chemo, and I wasn't about to miss the "fun" twice!
Fortunately my dentist had an opportunity to see me well before my treatment date, and in short order I was in the dental chair for routine checkup and cleaning. Turns out my oral health is fine, another small victory. A question was posed during my exam however: could X-rays be taken, as they had no new ones of me for a few years? I hesitated, just wondering how much radiation a person like me is exposed to over the course of their treatment. I don't think there is a standard for such things however, but given the previous history of CT's and Xrays (and more to come), one more dental Xray every 3 or 4 years wouldn't change much. With that clean bill of health for my teeth I could now assist in the disposal of the last of Halloween candy. And I did.
In constrast to the cool Halloween, our November weather this year defied the norm. I kind of relate to that concept. Warm when it was supposed to be cold, bright and sunny when it should have been overcast and snowy. A late Indian Summer one week and I was even able to ride my bike a few times. Just biding my time to start chemo, so you know something dumb would happen, and it did: I sneezed. Not your regular "ah-choo, sniffle-sniffle" sneeze, but one that started from somewhere near the Earth's core and continued building momentum during it's entire transit through me. I pulled something deep in my stomach, maybe a muscle. Maybe a hernia. I needed to make sure all my internal organs were present. It was a painful sneeze. It hurt. A lot. During the early parts of my recovery from surgery, a sneeze or cough would cause intense pains, but they were momentary. This persisted for three days. Sitting was uncomfortable, but walking was no problem. I could sleep fine, but waking up and crawling out of bed was painful. I saw my family doctor. The Terry of years ago would have pretty much ignored it assuming it would just get better, eventually. Now every ache sends me running to the doctor. Sigh.
Turns out the doctor didn't find a hernia, or anything really wrong, as after a few days the pain was completely gone and everything worked as it should (as well as it did before the sneeze at least). The doctor was duly impressed with my mighty ability to sneeze in such a powerful fashion. From then on I decided that I should only use my power-of-sneezing for the good of mankind.
Recovering from the Great Sneezing Scare, I was feeling all-around OK. I was as strong and confident as any time during my Cancer journey (heck I even cleaned the gutters...twice!). I was veteran of the chemo wars, I knew what to expect. The day prior to my chemo was full of encouraging messages, support and hope from friends and family. All expressed confidence in my ability to handle what was coming, reinforcing my resolve.
Tuesday, the 16th of November dawned bright and cool. My lesson learned from prior experience, breakfast was light, no coffee and lots of water to drink. My spirits were good as I arrived at the Cancer Centre, and soon I was being seated in the special chairs they have for us patients. IV bags were set up, and my nurse was checking orders for this round of treatment. As needle pierced thin skin covering my Port, my journey resumed it's course, forward, one more time.
What Happens Next is simple: more chemo. The resolution of the CT devices can't show tumours under a certain size. As a precaution I am scheduled for five more rounds of chemotherapy. It turns out that the effectiveness of chemotherapy diminishes with continuous usage, with 12 sessions being classed as 'best bang for buck'. Personally I am all for arming my white blood cells with high-tech lasers and plasma guns and whacking the cancer cells in hand-to-hand ("flagella to flagella?") combat. Until that happens chemo is my route.
Since I had seven session prior to my liver surgery, I can "only" have five more using this current suite of drugs. Should I require further treatment, other drugs would be substituted and chemo would continue with those. Hopefully this will not be necessary. My next round of chemotherapy would commence Tuesday, November 16th of this year. Once more I had a plan, and I could continue on with life.
Before I could have chemo though, I needed to have my IV Port flushed. Seems that after chemo #7 the blood return wasn't returning. So I had a session in the chemo chair where coughing, agitation and tap-dancing routines were attempted in order to cause the blood return to work. Since my high-tech flapping-about failed, the heavy artillery were called in: chemical equivalents of Liquid Plumbr and the Roto Rooter guy were used. About an hour later the blood return was checked and yes, I had blood. Life is good.
The interval between my Oncologist visit and eighth chemo session is about three weeks, so I had some 'free' time on my hands. I made darn sure I got in my walking / bike riding / chess playing and any other 'Terry' activities I could before being whacked by chemo. In particular I celebrate Halloween, usually by sacrificing a pumpkin. Or two. Or in this case about 7. Prior to my surgery friends of mine decided my barren front porch could use some dressing up, so they showed up with 10 or so bright orange pumpkins and took the liberty of my not being home to 'decorate' the front steps.
Since I was only able to give about three of the damn things away, I was left with a mound of pumpkins. No, I do not care for pumpkin pie either!
I do not like pumpkin pie,
If I eat it I will cry.
There is something about this putrid colour
gastronomic discretion, better part of valour
it's a fruit with the consistency of pudding
that sends my taste buds a-running
Blueberry, Apple, Peach, Cherry, and more Blueberry
Pie digression aside, I am now left with numerous pumpkins and Halloween is right around the corner. One Jack-O-Lantern is plenty, seven is just a lot of work. So I decided to make my "Pumpkin-O-pede"
 | |
| pumpkin-O-pede |
Halloween was quiet and cold, only about 30 kids showed up. Guess it was up to me to finish off the left-over candy. Which really was unfortunate timing, as I had decided to make a dental appointment before I started chemo again. Yet another medical appointment forthcoming...
Oral health can actually be quite critical during the treatment process. Effects of treatment can alter taste perceptions, and cause mouth sores which provide a vector for bacteria to enter the body. Negative fun. Due to sensitivity of the mouth and gums, alcohol mouth washes are verboten, the normal practice is to rinse with baking soda dissolved in warm salt water. Flossing can be dangerous during the treatment time as well, simply because of cuts to the gum. I had missed my last Dental appointment since it as in the middle of my last round of chemo, and I wasn't about to miss the "fun" twice!
Fortunately my dentist had an opportunity to see me well before my treatment date, and in short order I was in the dental chair for routine checkup and cleaning. Turns out my oral health is fine, another small victory. A question was posed during my exam however: could X-rays be taken, as they had no new ones of me for a few years? I hesitated, just wondering how much radiation a person like me is exposed to over the course of their treatment. I don't think there is a standard for such things however, but given the previous history of CT's and Xrays (and more to come), one more dental Xray every 3 or 4 years wouldn't change much. With that clean bill of health for my teeth I could now assist in the disposal of the last of Halloween candy. And I did.
In constrast to the cool Halloween, our November weather this year defied the norm. I kind of relate to that concept. Warm when it was supposed to be cold, bright and sunny when it should have been overcast and snowy. A late Indian Summer one week and I was even able to ride my bike a few times. Just biding my time to start chemo, so you know something dumb would happen, and it did: I sneezed. Not your regular "ah-choo, sniffle-sniffle" sneeze, but one that started from somewhere near the Earth's core and continued building momentum during it's entire transit through me. I pulled something deep in my stomach, maybe a muscle. Maybe a hernia. I needed to make sure all my internal organs were present. It was a painful sneeze. It hurt. A lot. During the early parts of my recovery from surgery, a sneeze or cough would cause intense pains, but they were momentary. This persisted for three days. Sitting was uncomfortable, but walking was no problem. I could sleep fine, but waking up and crawling out of bed was painful. I saw my family doctor. The Terry of years ago would have pretty much ignored it assuming it would just get better, eventually. Now every ache sends me running to the doctor. Sigh.
Turns out the doctor didn't find a hernia, or anything really wrong, as after a few days the pain was completely gone and everything worked as it should (as well as it did before the sneeze at least). The doctor was duly impressed with my mighty ability to sneeze in such a powerful fashion. From then on I decided that I should only use my power-of-sneezing for the good of mankind.
Recovering from the Great Sneezing Scare, I was feeling all-around OK. I was as strong and confident as any time during my Cancer journey (heck I even cleaned the gutters...twice!). I was veteran of the chemo wars, I knew what to expect. The day prior to my chemo was full of encouraging messages, support and hope from friends and family. All expressed confidence in my ability to handle what was coming, reinforcing my resolve.
Tuesday, the 16th of November dawned bright and cool. My lesson learned from prior experience, breakfast was light, no coffee and lots of water to drink. My spirits were good as I arrived at the Cancer Centre, and soon I was being seated in the special chairs they have for us patients. IV bags were set up, and my nurse was checking orders for this round of treatment. As needle pierced thin skin covering my Port, my journey resumed it's course, forward, one more time.
Sunday, November 21, 2010
Rebuilding - Part I
Colon Surgery. Seven rounds of chemotherapy. Liver Surgery and Gall bladder removal. I had undergone my hardest battles with Cancer, so I should be optimistic, right? It is amazing what the human spirit can endure, but it was not without cost. For me it was the realization how frail emotionally I had become. The physical body was slowly recovering, the healing enhanced by simply being out of the hospital. My emotional state was characterized by a series up highs and lows, with the additional struggle that my ability to concentrate was virtually non-existent. During this time it was truly the 'Daze of my life'.
It was time to put my mantras, cantrips and hard-won observations into practice: live as best you can, when you can, however you can. Finding the victories in the little things: walking a little longer, feeling a little stronger, breathing a little better, and, not letting my emotions overwhelm me, let it go when I could not cope. I'm generally not prone to being the overly-emotional type, but there are times when I would remember a singular experience and be overwhelmed, and the tears would flow.
Routine returned as the remnants of the physical surgery were removed. My usual daily activities re-asserted themselves; taking my weight and temperature daily, recording the days activities in my journal, even the occasional insight as to what it all meant. Writing he in my journal even helped improve my concentration and organizing of my thoughts. Wish I would have learned this habit while I was still in school! Perhaps however my 'best medicine' was the season of Fall itself. My walks were usually accompanied with my trusty Kodak Digital Camera (perfect for people like me who can barely spell "photo-gaffe") Trees of golden and red hues, maples on fire in the early-morning sunlight. Reminders of my boyhood in Northern Ontario, where miles and miles of unending colours would entertain me on the bus rides home from school.
The walks became longer and my mood got better. I had many projects on the go waiting in my workshop, I have opportunities to do things, hopefully I would find the discipline to return to thinking of things other than the Cancer.
Canadian Thanksgiving had come and gone, and I have determined that the last time I had Thanksgiving dinner with my family was when I was 17. Now my parents and grandparents are long gone, my brothers and sisters are scattered around the province. It is doubtful the family will ever celebrate this particular holiday together in this way in my lifetime. But life goes on and I go with it.
A significant event occurred with the passing of Thanksgiving: my birththday. Turning 51 closed off that significant chapter of my life known as "The Big Five-Oh". My personal birthday present to myself is an HP 35S RPN Calculator. More calculator than I will ever need, a programmable, hearkening back to the days of the classic HP's of the 70's rather than the future 'all thumbs' wipe & touch devices that are so common now.
Treating myself was nice, but my best gift was being able to pass on my experiences to others. I was only out of the hospital two weeks when I was back in - visiting a friend, undergoing his surgery for colon cancer. Thankfully his path does not follow mine. We shared our experiences, bonded in only the way that cancer patients can. Humour as always can be found anywhere: while sitting and chatting with my friend his nurse stopped in. There was a double-take as she recognized me from my earlier stays there, delighted that I was only visiting. Helping others is a great way to snap out of the moping and emotional morass I'd sometimes find myself in.
Hope is also what I was able to give to another friend. The great part about undergoing all these wonderful medical procedures is that I lived through them! Having someone to talk to who has experienced first-hand the wonders of modern medicine can be reassuring to someone anxiously awaiting the process. In this case I am able to allay the fears my friend was having about his upcoming colonoscopy. In return, he has reported a clean bill of health! Sharing my experiences has been a wonderful feeling for me, being able to hear the stories of others reassures me that I am not alone.
An observation a friend of mine once made to me, although pertaining to a technical problem seemed to fit within the struggles I was currently undergoing. During attempts to fix an ongoing technical issue at work, I would vent my frustrations to my friend citing all my failures to fix this particular problem. Eventually it did get fixed, and his comment to me was if I noticed how suddenly and spontaneously it "resolved itself" and just worked normally like it always did?
It sure seemed like someone "flipped a switch", as my physical, mental and emotional health returned to normal. The curious thing is I cannot pinpoint any specific time or event that would correspond with when it happened! All I can say for certain is that sometime before Halloween I was more like my old self. Maybe it was my visit with my Oncologist to discuss further treatment options. Or maybe it was because of my artistic Halloween pumpkin creation. As October drew to a close, I met with my Oncologist to discuss What Happens Next. Maybe that's what my fear has been all along.
It was time to put my mantras, cantrips and hard-won observations into practice: live as best you can, when you can, however you can. Finding the victories in the little things: walking a little longer, feeling a little stronger, breathing a little better, and, not letting my emotions overwhelm me, let it go when I could not cope. I'm generally not prone to being the overly-emotional type, but there are times when I would remember a singular experience and be overwhelmed, and the tears would flow.
Routine returned as the remnants of the physical surgery were removed. My usual daily activities re-asserted themselves; taking my weight and temperature daily, recording the days activities in my journal, even the occasional insight as to what it all meant. Writing he in my journal even helped improve my concentration and organizing of my thoughts. Wish I would have learned this habit while I was still in school! Perhaps however my 'best medicine' was the season of Fall itself. My walks were usually accompanied with my trusty Kodak Digital Camera (perfect for people like me who can barely spell "photo-gaffe") Trees of golden and red hues, maples on fire in the early-morning sunlight. Reminders of my boyhood in Northern Ontario, where miles and miles of unending colours would entertain me on the bus rides home from school.
The walks became longer and my mood got better. I had many projects on the go waiting in my workshop, I have opportunities to do things, hopefully I would find the discipline to return to thinking of things other than the Cancer.
Canadian Thanksgiving had come and gone, and I have determined that the last time I had Thanksgiving dinner with my family was when I was 17. Now my parents and grandparents are long gone, my brothers and sisters are scattered around the province. It is doubtful the family will ever celebrate this particular holiday together in this way in my lifetime. But life goes on and I go with it.
A significant event occurred with the passing of Thanksgiving: my birththday. Turning 51 closed off that significant chapter of my life known as "The Big Five-Oh". My personal birthday present to myself is an HP 35S RPN Calculator. More calculator than I will ever need, a programmable, hearkening back to the days of the classic HP's of the 70's rather than the future 'all thumbs' wipe & touch devices that are so common now.
Treating myself was nice, but my best gift was being able to pass on my experiences to others. I was only out of the hospital two weeks when I was back in - visiting a friend, undergoing his surgery for colon cancer. Thankfully his path does not follow mine. We shared our experiences, bonded in only the way that cancer patients can. Humour as always can be found anywhere: while sitting and chatting with my friend his nurse stopped in. There was a double-take as she recognized me from my earlier stays there, delighted that I was only visiting. Helping others is a great way to snap out of the moping and emotional morass I'd sometimes find myself in.
Hope is also what I was able to give to another friend. The great part about undergoing all these wonderful medical procedures is that I lived through them! Having someone to talk to who has experienced first-hand the wonders of modern medicine can be reassuring to someone anxiously awaiting the process. In this case I am able to allay the fears my friend was having about his upcoming colonoscopy. In return, he has reported a clean bill of health! Sharing my experiences has been a wonderful feeling for me, being able to hear the stories of others reassures me that I am not alone.
An observation a friend of mine once made to me, although pertaining to a technical problem seemed to fit within the struggles I was currently undergoing. During attempts to fix an ongoing technical issue at work, I would vent my frustrations to my friend citing all my failures to fix this particular problem. Eventually it did get fixed, and his comment to me was if I noticed how suddenly and spontaneously it "resolved itself" and just worked normally like it always did?
It sure seemed like someone "flipped a switch", as my physical, mental and emotional health returned to normal. The curious thing is I cannot pinpoint any specific time or event that would correspond with when it happened! All I can say for certain is that sometime before Halloween I was more like my old self. Maybe it was my visit with my Oncologist to discuss further treatment options. Or maybe it was because of my artistic Halloween pumpkin creation. As October drew to a close, I met with my Oncologist to discuss What Happens Next. Maybe that's what my fear has been all along.
Thursday, November 18, 2010
Liver & Onions - Part V
It's Tuesday, Sept 28, a lifetime since my surgery on the 22nd. I'm walking now. Indeed my primary recreation is now walking. My squeaky-wheeled IV pole and I are a familiar sight wandering around the hospital. Wearing two Johnny shirts, clad in socks and booties, attached to an IV, wandering down to the quieter floors to get some exercise. Speed walking, as best as I can. I race down the deserted Administration hallways, my IV pole rattling and squeaking. Presently there's a group of administrative types, four women outside of doorway. I am asked what room I am from. I am asked if I am looking for something? Was I lost? Hugely amused I indicate that this is therapy for my surgery. They are surprised to find out my Liver surgery was so recent and I seemed to be quite active. One lady, a nurse, noted I was actually flushed, meaning my heart and lungs were getting a proper cardio workout. I can move when I walk, even wearing only hospital booties on my feet, there are few who can keep up with me. I am cheered by their encouragement.
My walk is boring but necessary. I walk, get tired, go to my room, nap. Get up, walk some more, drink lots of water. My sinuses are getting stuffed up, I've been in this hospital too long. Getting restless, I start to watch movies on my netbook. I fall asleep quicker and earlier. Exercise, even this small amount, saps my strength. But I eat, and the food stays down. My IV comes off, it's been on my dominant hand the past three days, it's a relief to be free. Now the only thing I have tethering me are my two JP drainage tubes. One will come out before I leave these facilities, the other will be removed by the outpatient care nurse. My adventures within the hospital continue though.
More walking, this time sans IV pole. I am free to move my arms, to generate the cadence that is my norm. I am speed walking down the administration corridor again when I see a security guard watching me. I pass by the elevator, turn and retrace my steps. I do this several more times. Now there are two security guards, pacing me. One asks if I am doing some sort of test. Without stopping or breaking stride I indicate that I'm simply walking for the exercise. The guards are relieved that I am not some lunatic randomly meandering through the hallways. There is no randomness in my walk, as for the former well that's open for debate.
Humour in a hospital; two days in a row I'm stopped by various folks concerned with my strange behavior. I am actually happy now, for I have seen my surgeon and he has asked if I want to go home! Yes! I am scheduled for discharge that Wednesday. First there remains a small matter of removing some staples and one of the JP drainage tubes. My adventures continue, this time with the help of the student nurses.
Throughout this latest hospital stay I was visited by many student nurses (male and female) and all were caring and considerate. And so very very young. I repeated my history many times, I had my vitals taken routinely, with the occasionally balky BP cuff just popping off and seeing the chagrin of the student who had to figure out how to handle these minor annoyances. The last day proved to be the most adventurous, as actual procedures were to be performed on the unsuspecting patient!
My surgical incision runs completely along my rib cage, and had about 14,000 staples in it. The first job is to remove every other staple. Fairly simple, the staples are snipped then pulled out with a smooth motion. That's the theory, and it worked great when the teaching nurse did it. The students who followed did ok, no problems. The interesting part was the replacement of the covering. I think that she used about 18 miles of packing tape. The second procedure was the removal of one of my JP drainage tubes.
A fourth year student nurse was shown how to remove the sutures around the drainage tube. We had our sterile field, we had the tiny scissors and the removal technique. What my novice nurse did not quite realize that when pulling out the tube you do so in one fluid, continuous motion. I ended up doing a lot of deep breathing during this process. One of the oddest sensations is the removal of the tube. It's not exactly painful, but not pleasant either. It's about 11 miles long and looks like a tapeworm. Perhaps I exaggerate somewhat. But it's a relief when it's out. After they pack me up in more tape I am ready to get dressed. Wearing real clothing, I notice that my clothes are tight. Turns out I am so full of liquid that I walk out of the hospital at 180lbs, the most I have weighed these past six months. But that weight doesn't last long, and every two hours when I return home I return some of my gains.
Home, familiar and comfortable. Well eventually it would be. I still have a drainage tube in me. This is my Nursing 101 lesson, as I would have to measure the output volume and drain the tube myself. Two days of this and I notice blood. I panic, call the clinic, and a nurse calmly reassures me that a a trace is ok. My volume does not increase appreciably, meaning the tube can now be removed. With the removal of the tube I figure I will be able to sleep now. Not so fast, there's still a fair amount of fluids in me. Sleep walking to the bathroom every 2 hours, oh joy. But it's my bathroom at least. In a few days my weight drops noticeably. Clothes fit better but the packing on my tummy seems to keep my breath short. It is a relief when the staples are removed. Still more packing. Still short of breath. I walk, as much as to get exercise as to breathe. Now that I am home I find that the relief I sought simply crashes down on me. All my emotional barriers have eroded, and I can go from calm to teary-eyed in a moments notice. I am grateful to be alive. I am thankful for all the care I have received, but in the back of my mind is the question: "Will this be enough?".
My walk is boring but necessary. I walk, get tired, go to my room, nap. Get up, walk some more, drink lots of water. My sinuses are getting stuffed up, I've been in this hospital too long. Getting restless, I start to watch movies on my netbook. I fall asleep quicker and earlier. Exercise, even this small amount, saps my strength. But I eat, and the food stays down. My IV comes off, it's been on my dominant hand the past three days, it's a relief to be free. Now the only thing I have tethering me are my two JP drainage tubes. One will come out before I leave these facilities, the other will be removed by the outpatient care nurse. My adventures within the hospital continue though.
More walking, this time sans IV pole. I am free to move my arms, to generate the cadence that is my norm. I am speed walking down the administration corridor again when I see a security guard watching me. I pass by the elevator, turn and retrace my steps. I do this several more times. Now there are two security guards, pacing me. One asks if I am doing some sort of test. Without stopping or breaking stride I indicate that I'm simply walking for the exercise. The guards are relieved that I am not some lunatic randomly meandering through the hallways. There is no randomness in my walk, as for the former well that's open for debate.
Humour in a hospital; two days in a row I'm stopped by various folks concerned with my strange behavior. I am actually happy now, for I have seen my surgeon and he has asked if I want to go home! Yes! I am scheduled for discharge that Wednesday. First there remains a small matter of removing some staples and one of the JP drainage tubes. My adventures continue, this time with the help of the student nurses.
Throughout this latest hospital stay I was visited by many student nurses (male and female) and all were caring and considerate. And so very very young. I repeated my history many times, I had my vitals taken routinely, with the occasionally balky BP cuff just popping off and seeing the chagrin of the student who had to figure out how to handle these minor annoyances. The last day proved to be the most adventurous, as actual procedures were to be performed on the unsuspecting patient!
My surgical incision runs completely along my rib cage, and had about 14,000 staples in it. The first job is to remove every other staple. Fairly simple, the staples are snipped then pulled out with a smooth motion. That's the theory, and it worked great when the teaching nurse did it. The students who followed did ok, no problems. The interesting part was the replacement of the covering. I think that she used about 18 miles of packing tape. The second procedure was the removal of one of my JP drainage tubes.
A fourth year student nurse was shown how to remove the sutures around the drainage tube. We had our sterile field, we had the tiny scissors and the removal technique. What my novice nurse did not quite realize that when pulling out the tube you do so in one fluid, continuous motion. I ended up doing a lot of deep breathing during this process. One of the oddest sensations is the removal of the tube. It's not exactly painful, but not pleasant either. It's about 11 miles long and looks like a tapeworm. Perhaps I exaggerate somewhat. But it's a relief when it's out. After they pack me up in more tape I am ready to get dressed. Wearing real clothing, I notice that my clothes are tight. Turns out I am so full of liquid that I walk out of the hospital at 180lbs, the most I have weighed these past six months. But that weight doesn't last long, and every two hours when I return home I return some of my gains.
Home, familiar and comfortable. Well eventually it would be. I still have a drainage tube in me. This is my Nursing 101 lesson, as I would have to measure the output volume and drain the tube myself. Two days of this and I notice blood. I panic, call the clinic, and a nurse calmly reassures me that a a trace is ok. My volume does not increase appreciably, meaning the tube can now be removed. With the removal of the tube I figure I will be able to sleep now. Not so fast, there's still a fair amount of fluids in me. Sleep walking to the bathroom every 2 hours, oh joy. But it's my bathroom at least. In a few days my weight drops noticeably. Clothes fit better but the packing on my tummy seems to keep my breath short. It is a relief when the staples are removed. Still more packing. Still short of breath. I walk, as much as to get exercise as to breathe. Now that I am home I find that the relief I sought simply crashes down on me. All my emotional barriers have eroded, and I can go from calm to teary-eyed in a moments notice. I am grateful to be alive. I am thankful for all the care I have received, but in the back of my mind is the question: "Will this be enough?".
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