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!
Saturday, November 27, 2010
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?".
Liver & Onions - Part IV
Room 623A will be my home for the next 7 days. I had come through Liver surgery with positive news: the margins of the 'good' side of the liver were clear,meaning that they think they got all the 'bad' side with it's tumours out of me. Additionally I won the bonus round I suppose, as I discovered I no longer had a gall bladder in me. Apparently this is normal for this type of surgery. A two-for-one deal. Several years ago a routine ultrasound (checking for kidney stones) found gall stones, but they never really bothered me. I guess they'll never bother me any more.
My next challenge would be to duplicate the efforts of my first surgery: sit up, walk, pass gas, poop, eat clear fluids, eat soft foods, eat real food. I had done this before I knew what to expect. Only this time it was harder, a hell of a lot harder. There lots of reasons for this, my surgery was huge for one thing, I was under for 7 hours. I had my gall bladder removed in addition to the tumour-affected kidney lobe. My blood work was all over the map and I would be on an IV for 7 straight days as fluids and chemicals were constantly being pumped into me. By Saturday my general appearance would begin to resemble the Michelin Man, I was puffy and full of liquids. My two JP drainage tubes worked round-the-clock. Whatever was being put into me seemed to just come right back out. Plus I was zoned out half the time I was there. For whatever reason the anaesthetic and pain meds, plus my general weakness completely sapped my strength and will. Physically I was able to do a few things, like get out of bed and into a chair. Mentally I just could not muster the energy to care.
Sleep was elusive during my time in hospital For me the strangest thing was when I would close my eyes and try to rest. Disturbing images would always come, I never got to go into a deep sleep. The meds from the epidural, the post-anaesthesia, the tons of chemicals I was receiving by IV were all making me better and worse at the same time. Sleep was so difficult to come by, I would have these intense vivid images. Landscapes that moved and morphed into dark, disturbing images. I would feel like I was drifting downwards into an opening into the earth that would narrow the further I went. I would force my eyes open and wonder what the hell was going on. It would happen every time I closed my eyes, for days. Sometimes I would drift off to sleep, as the body can only take so much. It was never deep sleep until after the epidural pump was removed on Sunday, five days after my surgery.
My expectations of following the path of my last recovery probably kept me from asking for help, especially in the sleep department. My doctors were following the process, I couldn't eat anything until Friday, and you know how I feel about Jello for breakfast. Jello for lunch. Jello for supper. From Friday til Sunday Jello and Juice were my dietary staples. When I did dream in those fitful sleeps I thought of nibbling on toast, eating bread, something with a solid texture. Never have I felt so weak, and the depression was lurking behind the veil of my soul, I could feel it coming on. The hardest battle I will have ever fought was not to heal my physical body, but to master my emotions and feelings. My concentration and 'emotional armour' were in ruins. I had to endure this experience with only the belief that the bad times don't last forever. Those late nights of being alone with my thoughts were the most difficult of my life. Now as I write this some two months after the fact, I still experience bouts of depression just recalling those events. Getting through it took all my strength. And I could not have done it alone. The nursing staff, doctors, my family my friends. I needed all their strength and support for this one.
Food. I was hungry, but I couldn't stomach another damn Jello. My physical strength had deserted me. I could muster up the energy to get out of bed, to sit in a chair, to shave. But I needed the incredible kindness of my nurses to help me wash my hair, help with sponge baths. Sitting in a bed, surrounded by curtains while trying to do a sponge bath is hard. Bending down to wash when you have had abdominal surgery is hard. I would have difficulty just putting on the booties on my feet. Water dripping all over, never quite getting that 'shower clean' feeling. Can't shower, you have an incision running the complete length of your ribcage. You can't even stand up without assistance. Those staples keep pulling, and the miles of surgical packing around it don't help you breathe too well.
Food. I was weak. I was urged by my doctors to walk. I was urged to pass gas. My doctors were concerned that my chemistry was too low. I would be given constant IV's to replenish chemicals. I would be given fizzy drinks of the same chemical to supplement the IV. My call bell was used frequently as I alerted the nursing staff that one more IV bag was on it's last few drops. Constant IV maintenance. Constant recording of vitals. Contant drainage of the JP tubes. Constant meds and shots. No sleep. No solid food. Depression was just waiting to come out. That Sunday I had my Epidural removed. Sunday through Monday morning I would surrender to that depression, for there was no longer any defense that I could use.
I forgot the words to my theme song, "The Mary Ellen Carter", a song I knew by heart since the 1980's. I couldn't think of the verse or refrain. The images I would see when I closed my eyes to sleep disturbed me so much I was going to ask for a sleeping pill. But I forgot, my memory and concentration were gone. I tried doing the times tables in my head. My degree in Mathematics did me no good at all. I would get as far as the 'five times' and then forget. I would start again, 1x1=1, 1x2=2, 1x3=2... there was simply no ability left in me to concentrate, to think, to do anything but despair.
At some point I ask if it's all worth it, do I want to continue with this life or not. Surrender the body, surrender the soul, surrender all you have become, admit you are not who you think you are. Learn to live with what you are becoming. Hard choices. Rationality is not to be found in a hospital during the hour of the wolf. The epidural detoxify must be working, sleep is not far away, the body will repair itself in time, hopefuly the rest of me will too.
Sunday passes into Monday. My very first colon surgery was marked by the physical pain as the epidural was removed from me. This surgery, the epidural was of no help for my emotional pain. But I made it through, and I would recover.
Food. Monday I ate 'soft foods' for the first time. The results were nothing short of spectacular. I had energy to walk. For the first time in almost six days I was able to walk, unassisted from my room down to the nursing station. I would repeat that trip, extending it to the remainder of the floor. I would be recognized by the nurses from my previous visit, some six months ago! The joy of walking is the joy of independence. Albeit I'm walking with an IV pole still attached to me. But I'm walking. I'm eating. I sleep hard for the first time, short duration, by my roommates wife comments that it's as if a switch has been thrown. I'm animated, alive, moving, and sleeping soundly. My roommate himself had a bad accident that crushed his muscles in his legs. The pain must be intense but he's stoic, has family and friends to help him through it. He and I finally have some talks after five days, when I'm cognizant of reality once again. It helps to have someone to talk with who is undergoing the 'Hospital Experience'.
Speaking of the 'Hospital Experience' things got better after I ate real food that Monday. My doctor was amazed for it was the first time he saw me out of bed (well if he'd come more than once a day he'd see this weak creature sitting in a chair). My downward slide had come to and end however. Once there was something solid to eat my strength and spirits returned. Once I could walk I could regain a taste of independence and freedom, I was motivated to get better and get out of that Hospital. My thoughts turned to getting home, to a shower, sleep in my own bed, wear my own clothes. I was healing where it counted most: my emotional and mental state. There are now two journeys I am following on my path to recovery: the physical and the spiritual. Guess which one was harder.
The bleak days of my recovery were starting to fade away, optimism was returning with my new-found strength. I once more looked forward, my Journey Onward Yielding again taking me from despair to hope.
My next challenge would be to duplicate the efforts of my first surgery: sit up, walk, pass gas, poop, eat clear fluids, eat soft foods, eat real food. I had done this before I knew what to expect. Only this time it was harder, a hell of a lot harder. There lots of reasons for this, my surgery was huge for one thing, I was under for 7 hours. I had my gall bladder removed in addition to the tumour-affected kidney lobe. My blood work was all over the map and I would be on an IV for 7 straight days as fluids and chemicals were constantly being pumped into me. By Saturday my general appearance would begin to resemble the Michelin Man, I was puffy and full of liquids. My two JP drainage tubes worked round-the-clock. Whatever was being put into me seemed to just come right back out. Plus I was zoned out half the time I was there. For whatever reason the anaesthetic and pain meds, plus my general weakness completely sapped my strength and will. Physically I was able to do a few things, like get out of bed and into a chair. Mentally I just could not muster the energy to care.
Sleep was elusive during my time in hospital For me the strangest thing was when I would close my eyes and try to rest. Disturbing images would always come, I never got to go into a deep sleep. The meds from the epidural, the post-anaesthesia, the tons of chemicals I was receiving by IV were all making me better and worse at the same time. Sleep was so difficult to come by, I would have these intense vivid images. Landscapes that moved and morphed into dark, disturbing images. I would feel like I was drifting downwards into an opening into the earth that would narrow the further I went. I would force my eyes open and wonder what the hell was going on. It would happen every time I closed my eyes, for days. Sometimes I would drift off to sleep, as the body can only take so much. It was never deep sleep until after the epidural pump was removed on Sunday, five days after my surgery.
My expectations of following the path of my last recovery probably kept me from asking for help, especially in the sleep department. My doctors were following the process, I couldn't eat anything until Friday, and you know how I feel about Jello for breakfast. Jello for lunch. Jello for supper. From Friday til Sunday Jello and Juice were my dietary staples. When I did dream in those fitful sleeps I thought of nibbling on toast, eating bread, something with a solid texture. Never have I felt so weak, and the depression was lurking behind the veil of my soul, I could feel it coming on. The hardest battle I will have ever fought was not to heal my physical body, but to master my emotions and feelings. My concentration and 'emotional armour' were in ruins. I had to endure this experience with only the belief that the bad times don't last forever. Those late nights of being alone with my thoughts were the most difficult of my life. Now as I write this some two months after the fact, I still experience bouts of depression just recalling those events. Getting through it took all my strength. And I could not have done it alone. The nursing staff, doctors, my family my friends. I needed all their strength and support for this one.
Food. I was hungry, but I couldn't stomach another damn Jello. My physical strength had deserted me. I could muster up the energy to get out of bed, to sit in a chair, to shave. But I needed the incredible kindness of my nurses to help me wash my hair, help with sponge baths. Sitting in a bed, surrounded by curtains while trying to do a sponge bath is hard. Bending down to wash when you have had abdominal surgery is hard. I would have difficulty just putting on the booties on my feet. Water dripping all over, never quite getting that 'shower clean' feeling. Can't shower, you have an incision running the complete length of your ribcage. You can't even stand up without assistance. Those staples keep pulling, and the miles of surgical packing around it don't help you breathe too well.
Food. I was weak. I was urged by my doctors to walk. I was urged to pass gas. My doctors were concerned that my chemistry was too low. I would be given constant IV's to replenish chemicals. I would be given fizzy drinks of the same chemical to supplement the IV. My call bell was used frequently as I alerted the nursing staff that one more IV bag was on it's last few drops. Constant IV maintenance. Constant recording of vitals. Contant drainage of the JP tubes. Constant meds and shots. No sleep. No solid food. Depression was just waiting to come out. That Sunday I had my Epidural removed. Sunday through Monday morning I would surrender to that depression, for there was no longer any defense that I could use.
I forgot the words to my theme song, "The Mary Ellen Carter", a song I knew by heart since the 1980's. I couldn't think of the verse or refrain. The images I would see when I closed my eyes to sleep disturbed me so much I was going to ask for a sleeping pill. But I forgot, my memory and concentration were gone. I tried doing the times tables in my head. My degree in Mathematics did me no good at all. I would get as far as the 'five times' and then forget. I would start again, 1x1=1, 1x2=2, 1x3=2... there was simply no ability left in me to concentrate, to think, to do anything but despair.
At some point I ask if it's all worth it, do I want to continue with this life or not. Surrender the body, surrender the soul, surrender all you have become, admit you are not who you think you are. Learn to live with what you are becoming. Hard choices. Rationality is not to be found in a hospital during the hour of the wolf. The epidural detoxify must be working, sleep is not far away, the body will repair itself in time, hopefuly the rest of me will too.
Sunday passes into Monday. My very first colon surgery was marked by the physical pain as the epidural was removed from me. This surgery, the epidural was of no help for my emotional pain. But I made it through, and I would recover.
Food. Monday I ate 'soft foods' for the first time. The results were nothing short of spectacular. I had energy to walk. For the first time in almost six days I was able to walk, unassisted from my room down to the nursing station. I would repeat that trip, extending it to the remainder of the floor. I would be recognized by the nurses from my previous visit, some six months ago! The joy of walking is the joy of independence. Albeit I'm walking with an IV pole still attached to me. But I'm walking. I'm eating. I sleep hard for the first time, short duration, by my roommates wife comments that it's as if a switch has been thrown. I'm animated, alive, moving, and sleeping soundly. My roommate himself had a bad accident that crushed his muscles in his legs. The pain must be intense but he's stoic, has family and friends to help him through it. He and I finally have some talks after five days, when I'm cognizant of reality once again. It helps to have someone to talk with who is undergoing the 'Hospital Experience'.
Speaking of the 'Hospital Experience' things got better after I ate real food that Monday. My doctor was amazed for it was the first time he saw me out of bed (well if he'd come more than once a day he'd see this weak creature sitting in a chair). My downward slide had come to and end however. Once there was something solid to eat my strength and spirits returned. Once I could walk I could regain a taste of independence and freedom, I was motivated to get better and get out of that Hospital. My thoughts turned to getting home, to a shower, sleep in my own bed, wear my own clothes. I was healing where it counted most: my emotional and mental state. There are now two journeys I am following on my path to recovery: the physical and the spiritual. Guess which one was harder.
The bleak days of my recovery were starting to fade away, optimism was returning with my new-found strength. I once more looked forward, my Journey Onward Yielding again taking me from despair to hope.
Tuesday, November 16, 2010
Liver and Onions - Part III
Humour is my most effective weapon during my cancer battles. For instance when I decided to go ahead with my liver surgery, I promptly announced that I did not want to wake up in the recovery room to the smell of onions. Now the title of this blog might make some sense. Incongruity is a wonderful thing for dissipating some of the overwhelming potency of stressful situations. I didn't say they were good jokes, nor are they meant to entertain anyone but myself (much like this blog).
So the lazy days of summer have come to a close. Fall is my favourite season and I had bittersweet feelings for undergoing surgery at this time. Some dark thought long entertained by me prior to my cancer: not when I would pass, but in what season. Fall I want to enjoy. Fall heralded not only a change of season but a new beginning, likely because of my many years in school. My job changes also have occurred around this time of year. So for me, the Fall was the start of a new adventure. One always starts off a new adventure with optimism and hope.
Surgery day, Wednesday September 22nd. Another early morning start, there are no other surgeries before mine. There is only one such procedure in any given day. My sleep the night before, as expected was light with lots of anxious glancing at the clock to see if I had overslept. Surgery itself was scheduled for 8AM, as always it seems. My morning routine that day was spare, showered, dressed, no breakfast. I would bring only my wallet with my Health Card. No phone, no extra clothing, no computer. What I needed most that morning was what I brought within me. I was calm, perhaps because of the by-now familiar process. The mechanics of the registration, the relocation to the surgical-preparation floor where I would change my street clothes for a Hospital gown, no longer be Terry McAlinden, but MCALINDEN, T -- PATIENT. I write from memories of that time, and find myself overwhelmed in emotion, literally unable to read what I write through blurred vision. At the time of the surgery I remember being outwardly calm, for had I not gone through this process once before and emerged with mind and body more or less intact? I could do this again. That was the plan. Always back to the plan, this helped my resolve time and again.
The experience of being in a Hospital gown and booties, with my freshly-inserted IV in the back of my hand are still vivid. External noises are muted as I focus my concentration inward. Calm on the outside, nervous on the inside. Waiting is the worst. My nurse is aware of my nervousness and the small talk we make while this or that is being done to me helps. I didn't have a medical entity beside me, I had a person compassionate and kind who genuinely cares about me.
Accompanied by family and my nurse we walk to the OR room. I'm given a bed that will serve as the vehicle which brings me into the surgical suite. Until then I am covered in warm blankets. I am cold. The chill is not all from the air conditioning. More waiting. Enough of being nervous, just get this show on the road I think to myself. Bemused that I am bored. Nothing to read. No computer, idleness as a distraction to surgery. The incongruity momentarily amuses me, but the thought is fleeting. My OR surgery nurse introduces herself. My Surgeon stops by, and marks a large 'X' on my right leg with a marker. I won't see him again until after my recovery. The rails are now up on the bed, I'm being moved. I murmur my goodbyes, and I feel the bed glide down the corridor and we go through the doors to the surgical room.
Have I mentioned how cold it is in these surgical rooms? Colder now as I am slid off one bed and roll onto the operating table. Have I mentioned how narrow they are? I am remembering the exact feeling six months prior. Everyone is masked, I can't tell my doctor from the anaesthesiologist. Oh, she's the one having me sit up as the epidural is placed into my back. My "HappyDural" I tend to call it. My glasses are removed and I lay down. Someone is talking, wonder when this will star----
ICU is my first conscious memory. Sleepy, someone is talking to me. I am hugged, people are glad I am awake. My awareness is slow to return. Questions are asked, and my answers are found satisfactory. In the back of my mind there's something I want to ask. I can't think of it. I sleep some more. I wake up as my vitals are being checked. The process repeats, how often I do not know. My nurse comments that I am a light sleeper. The radio is playing the same annoying song every time I wake up. Katy Parry's "California Gurls". Beach boys did it right the first time. Wednesday has turned to Thursday morning, and I am alert. I made it through a major surgery once again. I sleep yet again, feeling the emotional relief envelope me.
Barely 24 hours after surgery I am being asked if I can sit up from my bed in the ICU. My monitoring equipment shows I have OK blood pressure. I sit up. Immediately I collapse back to the bed, my blood pressure dropping. Dizziness passes, the nurse indicates that my BP is already back to normal, and we try again. Slowly. I can stand, on very unsteady legs, but my body is not listening to my wishes. My nurse has me, I do not fall. I walk, the five steps to the nursing station. I turn and walk back. It's true what they say: 10-step programs are hard!
Walking those ten steps permitted my release from ICU to my bed on the sixth floor, where I once spent 7 days in my previous life. My scheduled length of stay this time was for 8 days. I fully anticipated that the process would more-or-less follow what I had gone through before. Life is not so predictable, and I would encounter challenges that would take all my strength to overcome, and force my self-perception to change once again.
So the lazy days of summer have come to a close. Fall is my favourite season and I had bittersweet feelings for undergoing surgery at this time. Some dark thought long entertained by me prior to my cancer: not when I would pass, but in what season. Fall I want to enjoy. Fall heralded not only a change of season but a new beginning, likely because of my many years in school. My job changes also have occurred around this time of year. So for me, the Fall was the start of a new adventure. One always starts off a new adventure with optimism and hope.
Surgery day, Wednesday September 22nd. Another early morning start, there are no other surgeries before mine. There is only one such procedure in any given day. My sleep the night before, as expected was light with lots of anxious glancing at the clock to see if I had overslept. Surgery itself was scheduled for 8AM, as always it seems. My morning routine that day was spare, showered, dressed, no breakfast. I would bring only my wallet with my Health Card. No phone, no extra clothing, no computer. What I needed most that morning was what I brought within me. I was calm, perhaps because of the by-now familiar process. The mechanics of the registration, the relocation to the surgical-preparation floor where I would change my street clothes for a Hospital gown, no longer be Terry McAlinden, but MCALINDEN, T -- PATIENT. I write from memories of that time, and find myself overwhelmed in emotion, literally unable to read what I write through blurred vision. At the time of the surgery I remember being outwardly calm, for had I not gone through this process once before and emerged with mind and body more or less intact? I could do this again. That was the plan. Always back to the plan, this helped my resolve time and again.
The experience of being in a Hospital gown and booties, with my freshly-inserted IV in the back of my hand are still vivid. External noises are muted as I focus my concentration inward. Calm on the outside, nervous on the inside. Waiting is the worst. My nurse is aware of my nervousness and the small talk we make while this or that is being done to me helps. I didn't have a medical entity beside me, I had a person compassionate and kind who genuinely cares about me.
Accompanied by family and my nurse we walk to the OR room. I'm given a bed that will serve as the vehicle which brings me into the surgical suite. Until then I am covered in warm blankets. I am cold. The chill is not all from the air conditioning. More waiting. Enough of being nervous, just get this show on the road I think to myself. Bemused that I am bored. Nothing to read. No computer, idleness as a distraction to surgery. The incongruity momentarily amuses me, but the thought is fleeting. My OR surgery nurse introduces herself. My Surgeon stops by, and marks a large 'X' on my right leg with a marker. I won't see him again until after my recovery. The rails are now up on the bed, I'm being moved. I murmur my goodbyes, and I feel the bed glide down the corridor and we go through the doors to the surgical room.
Have I mentioned how cold it is in these surgical rooms? Colder now as I am slid off one bed and roll onto the operating table. Have I mentioned how narrow they are? I am remembering the exact feeling six months prior. Everyone is masked, I can't tell my doctor from the anaesthesiologist. Oh, she's the one having me sit up as the epidural is placed into my back. My "HappyDural" I tend to call it. My glasses are removed and I lay down. Someone is talking, wonder when this will star----
ICU is my first conscious memory. Sleepy, someone is talking to me. I am hugged, people are glad I am awake. My awareness is slow to return. Questions are asked, and my answers are found satisfactory. In the back of my mind there's something I want to ask. I can't think of it. I sleep some more. I wake up as my vitals are being checked. The process repeats, how often I do not know. My nurse comments that I am a light sleeper. The radio is playing the same annoying song every time I wake up. Katy Parry's "California Gurls". Beach boys did it right the first time. Wednesday has turned to Thursday morning, and I am alert. I made it through a major surgery once again. I sleep yet again, feeling the emotional relief envelope me.
Barely 24 hours after surgery I am being asked if I can sit up from my bed in the ICU. My monitoring equipment shows I have OK blood pressure. I sit up. Immediately I collapse back to the bed, my blood pressure dropping. Dizziness passes, the nurse indicates that my BP is already back to normal, and we try again. Slowly. I can stand, on very unsteady legs, but my body is not listening to my wishes. My nurse has me, I do not fall. I walk, the five steps to the nursing station. I turn and walk back. It's true what they say: 10-step programs are hard!
Walking those ten steps permitted my release from ICU to my bed on the sixth floor, where I once spent 7 days in my previous life. My scheduled length of stay this time was for 8 days. I fully anticipated that the process would more-or-less follow what I had gone through before. Life is not so predictable, and I would encounter challenges that would take all my strength to overcome, and force my self-perception to change once again.
Liver and Onions - Part II
There were two visits to the office of my Internal Medicine specialist. One was for a heart test called an echo-cardiogram, and of course the other visit was to discuss the results of this test. More tests simply to determine if I am healthy enough to endure a procedure to help destroy the results of a life-threatening disease. So how did I fare on the echo-cardiogram? Very well, of course!
My follow-up visit was just as good. When I asked if everything was fine from the echo-cardiogram, the response he gave me was I was better than fine, I was good! In his words I was a 'good candidate for liver surgery'. Praise like that might make me blush.
I was actually quite content that day, as the mornings good news put me in optimistic spirits. During my bike ride later that afternoon I witnessed a rather spectacular sunset. I was enchanted by the juxtaposition of the fiery red setting sun, and the brilliant silver of a rising full moon. Naturally I did not have my camera with me, but that memory will always remain. There was just under a month away from my surgery. Fall was coming, but the remaining days of Summer would be filled with physical and mental activities. The nights were usually untroubled, faith and emotion were still under my control. Not that I didn't have worries. In particular I was concerned by the estimated time of the surgery, possibly 6-8hrs, significantly more than my colon surgery. Sometimes I would have those flights of fancy that the tumours were all gone, that I wouldn't need surgery, and everything would be better. Well it's good to dream.
Except for one more CT and the pre-admission, I would have almost no further interaction with the medical community for the month before surgery. Physically I was feeling optimistic, I was riding and walking, I felt I had some strength and stamina. Later, I would wish I had more mental and emotional stamina. The emotional armour in particular would take a major beating.
The week before my surgery my doctor informed me that the last CT still showed the tumours shrinking, and that the liver embolization was working. Positive news only could help my mood. By now however I was thinking more of the 'what-if' scenarios. It bothered me how much I was bothered by the upcoming surgery. My honest fear however was that even if the surgery went flawlessly, even if there were no complications what if it wasn't enough? What if the cancer would still remain, what more could be done for me? Would there still be a plan to save me and give me hope? It was getting more difficult to remain distracted. Eventually I would have to face the questions and decide for myself how to handle it. For now however I played chess, I rode my bike, and I kept active as much as I could. The big day was getting closer, I was as ready as I would ever be.
My follow-up visit was just as good. When I asked if everything was fine from the echo-cardiogram, the response he gave me was I was better than fine, I was good! In his words I was a 'good candidate for liver surgery'. Praise like that might make me blush.
I was actually quite content that day, as the mornings good news put me in optimistic spirits. During my bike ride later that afternoon I witnessed a rather spectacular sunset. I was enchanted by the juxtaposition of the fiery red setting sun, and the brilliant silver of a rising full moon. Naturally I did not have my camera with me, but that memory will always remain. There was just under a month away from my surgery. Fall was coming, but the remaining days of Summer would be filled with physical and mental activities. The nights were usually untroubled, faith and emotion were still under my control. Not that I didn't have worries. In particular I was concerned by the estimated time of the surgery, possibly 6-8hrs, significantly more than my colon surgery. Sometimes I would have those flights of fancy that the tumours were all gone, that I wouldn't need surgery, and everything would be better. Well it's good to dream.
Except for one more CT and the pre-admission, I would have almost no further interaction with the medical community for the month before surgery. Physically I was feeling optimistic, I was riding and walking, I felt I had some strength and stamina. Later, I would wish I had more mental and emotional stamina. The emotional armour in particular would take a major beating.
The week before my surgery my doctor informed me that the last CT still showed the tumours shrinking, and that the liver embolization was working. Positive news only could help my mood. By now however I was thinking more of the 'what-if' scenarios. It bothered me how much I was bothered by the upcoming surgery. My honest fear however was that even if the surgery went flawlessly, even if there were no complications what if it wasn't enough? What if the cancer would still remain, what more could be done for me? Would there still be a plan to save me and give me hope? It was getting more difficult to remain distracted. Eventually I would have to face the questions and decide for myself how to handle it. For now however I played chess, I rode my bike, and I kept active as much as I could. The big day was getting closer, I was as ready as I would ever be.
Monday, November 15, 2010
Liver & Onions - Part I
Summer was almost gone, my chemo for this round was completed, and the future had one big yellow post-it note affixed to it: "Liver Surgery" is all it said. Shortly after my sixth chemo I was sent for a CT exam. I drank a concoction known as 'RediCat', in order to enhance the contrast I suppose. The claim on the bottle was that it had some sort of berry flavor. I did not realize 'chalk' was a member of the berry family. After the exam I was advised to drink a LOT of liquids to flush out the contrast material. Now I had three CT scans in my life, including this most recent one. This was the first time however that I was alert and conscious through the process. Nothing really exciting happened, so I guess I would have been bored during the other two if I had remained awake!
The CT itself was positive in a good way, showing that the tumours on my liver had noticeably shrunk. Unfortunately continual chemo was not a solution as there would be a point of diminishing returns. The plan was and still continued to be surgery to remove a section of the liver with the tumours. First however would be the consult with the surgeon, as detailed in my previous post.
As a result of meeting with my new doctor, I was scheduled for both a liver embolization and another consultation with an Internal Medicine specialist. A liver embolization is a day surgery, and by now anyone reading this blog knows all about Terry & Day Surgeries....here I go again!
A liver embolization procedure consists of sticking a needle into the liver to divert blood flow. Also to check the oil I think. A liver embolization procedure is classified as a day surgery, meaning you are in and out in a day, unless of course there are complications. Considering that the liver is the second largest organ in the body and has about a million blood vessels attached to it, there is a chance for nasty things to occur. Deciding to worry about the what-ifs won't cure me. I have faith in my medical team, and faith in myself, and that's enough. Onwards once more to my favorite hospital.
Thursday morning of August 12th I get up at 5:30AM, preparing for my 8:00AM surgery. Which means be at the hospital for six and wait around in nothing but a Hospital Gown and socks for two hours. I know the routine well enough that I am no longer nervous at the prospect of sitting in a room full of other similarly-attired folks, it's just something to be endured. Finally my turn comes and I am brought to the surgery prep & recovery room. Being able to get into a bed is a welcome relief; I can get warm blankets and finally stop shivering. It must be due to the cold days of August I tell myself.
Being warm and comfortable lasted about 10 minutes. My nurse appeared with a razor in hand. "We need to shave you" she said as preamble to explaining how the embolization procedure would go. Apparently it's snaked through a large vein starting from the the groin. Guess where I needed to be shaved. Pleasant conversation ensued during this process, and yes I was cold, why do you ask? A deft touch and no razor burns at least, for what was yet another novel experience for me. From then on it was more hurry-up-and-waiting, til finally, one and a half hours after my scheduled time I was wheeled down to Radiology. Deja Vu, it was the same place for my Port surgery some six months prior. IV was hooked up and I was out like like the Leafs during playoffs. Woke up hours later in the same bed that I started from that morning. I did learn something however, that a Liver Embolization is done through the side of the abdomen, and not through the groin. So now I have some additional personal grooming and a neat hole on my right side. No side effects, no complications and no pain. And I was hungry. A stop on the way home at McD's and all was right with the world. Then another nap!
There was less napping and more bike riding in earnest, as I wanted to build up my strength and stamina for the upcoming surgery. My clock building took a hiatus since there were no more chemo sessions, but I found a neat little novelty in making LED Life circuits. Therapy through blinkin' lights...
Although all my pre-surgical procedures proceeded at a measured pace, I still had time on my hands to think about the future. Here's where being mentally prepared comes in handy - if you start thinking about bad things then all you will think about are bad things! As my surgery date drew closer I finally resorted to the cantrip that I will simply go to sleep during my surgery and if I wake up, that's great, and if I don't, well I wouldn't need to worry anymore! The long lead time between the end of my chemo and my surgery worked against me in this way. Physically I was gaining strength and endurance. I rode my bike all the time, I ate well enough that I was gaining weight at roughly a pound a week and keeping it on. But the mental game can effectively negate all positive changes if those what-if thoughts are allowed to run unchecked. So I started to keep those thoughts in check, literally, by playing chess.
In my first year of university I found myself as the nominal president of the student-run chess club. The other positions of secretary and treasurer were filled by the remaining two members of said club. Sadly my brief University chess career lasted until my first tournament, where I ended up 3rd out of 3 competitors. My passion for the game was inspired like many others, by Bobby Fischer. Passion had diminished to a pastime, then to an occasional interlude. Finally it was non-existent. During the early days of the internet, online chess seemed interesting but failed to hold my attention or respect. Playing a person is infinitely preferred to playing a computer. My time off allowed me to once again pursue my passion from days-gone-by.
Found out that the local Windsor chess club would meet for tournaments several times during the summer, and I often hung out there. Never entered the tournaments themselves however, due to the fact that my game sucked. I did find it therapeutic to play actual live people on occasion. For the most part, got my butt kicked. But as a wise man once told me, if I'm thinking about chess (or anything else), then I'm not thinking about that THING that's always there. Yeah I'm talkin' 'bout you, Cancer sweetheart!
Summer was drawing to a close, with days getting noticeably shorter. Another CT was booked for the end of August (my fourth) to verify that the Liver Embolization was working. A visit to the Internal Medicine specialist would happen shortly. And of course, my surgery date was now fixed for September 22nd. As I was often fond of saying, "the excitement continues to build!".
The CT itself was positive in a good way, showing that the tumours on my liver had noticeably shrunk. Unfortunately continual chemo was not a solution as there would be a point of diminishing returns. The plan was and still continued to be surgery to remove a section of the liver with the tumours. First however would be the consult with the surgeon, as detailed in my previous post.
As a result of meeting with my new doctor, I was scheduled for both a liver embolization and another consultation with an Internal Medicine specialist. A liver embolization is a day surgery, and by now anyone reading this blog knows all about Terry & Day Surgeries....here I go again!
A liver embolization procedure consists of sticking a needle into the liver to divert blood flow. Also to check the oil I think. A liver embolization procedure is classified as a day surgery, meaning you are in and out in a day, unless of course there are complications. Considering that the liver is the second largest organ in the body and has about a million blood vessels attached to it, there is a chance for nasty things to occur. Deciding to worry about the what-ifs won't cure me. I have faith in my medical team, and faith in myself, and that's enough. Onwards once more to my favorite hospital.
Thursday morning of August 12th I get up at 5:30AM, preparing for my 8:00AM surgery. Which means be at the hospital for six and wait around in nothing but a Hospital Gown and socks for two hours. I know the routine well enough that I am no longer nervous at the prospect of sitting in a room full of other similarly-attired folks, it's just something to be endured. Finally my turn comes and I am brought to the surgery prep & recovery room. Being able to get into a bed is a welcome relief; I can get warm blankets and finally stop shivering. It must be due to the cold days of August I tell myself.
Being warm and comfortable lasted about 10 minutes. My nurse appeared with a razor in hand. "We need to shave you" she said as preamble to explaining how the embolization procedure would go. Apparently it's snaked through a large vein starting from the the groin. Guess where I needed to be shaved. Pleasant conversation ensued during this process, and yes I was cold, why do you ask? A deft touch and no razor burns at least, for what was yet another novel experience for me. From then on it was more hurry-up-and-waiting, til finally, one and a half hours after my scheduled time I was wheeled down to Radiology. Deja Vu, it was the same place for my Port surgery some six months prior. IV was hooked up and I was out like like the Leafs during playoffs. Woke up hours later in the same bed that I started from that morning. I did learn something however, that a Liver Embolization is done through the side of the abdomen, and not through the groin. So now I have some additional personal grooming and a neat hole on my right side. No side effects, no complications and no pain. And I was hungry. A stop on the way home at McD's and all was right with the world. Then another nap!
There was less napping and more bike riding in earnest, as I wanted to build up my strength and stamina for the upcoming surgery. My clock building took a hiatus since there were no more chemo sessions, but I found a neat little novelty in making LED Life circuits. Therapy through blinkin' lights...
 | |
| LED Life -Random Patters based on precise rules! |
In my first year of university I found myself as the nominal president of the student-run chess club. The other positions of secretary and treasurer were filled by the remaining two members of said club. Sadly my brief University chess career lasted until my first tournament, where I ended up 3rd out of 3 competitors. My passion for the game was inspired like many others, by Bobby Fischer. Passion had diminished to a pastime, then to an occasional interlude. Finally it was non-existent. During the early days of the internet, online chess seemed interesting but failed to hold my attention or respect. Playing a person is infinitely preferred to playing a computer. My time off allowed me to once again pursue my passion from days-gone-by.
Found out that the local Windsor chess club would meet for tournaments several times during the summer, and I often hung out there. Never entered the tournaments themselves however, due to the fact that my game sucked. I did find it therapeutic to play actual live people on occasion. For the most part, got my butt kicked. But as a wise man once told me, if I'm thinking about chess (or anything else), then I'm not thinking about that THING that's always there. Yeah I'm talkin' 'bout you, Cancer sweetheart!
Summer was drawing to a close, with days getting noticeably shorter. Another CT was booked for the end of August (my fourth) to verify that the Liver Embolization was working. A visit to the Internal Medicine specialist would happen shortly. And of course, my surgery date was now fixed for September 22nd. As I was often fond of saying, "the excitement continues to build!".
Sunday, November 14, 2010
Interlude - Part II
For seven weeks I would have no further chemo treatments. A break of almost two months. My weight would steadily increase. I rode my bike and walked to build up my stamina and strength. My days were filled with activities, I built clocks, I played chess, I didn't think about the future too much. That would change as I progressed through the medical process once again. First to come would be the meeting with my surgeon.
When I was first diagnosed with Cancer, the surgeon who performed the initial colonoscopy also performed my colon surgery. It was a blow to me when he left Windsor for brighter opportunities abroad. His associate however was lauded as the best for liver surgery, and my case was being handed over to him. Kismet. Karma. Kool. Whatever happens to me I have to admit that in my life I have never experienced as many traumatic events with as many positive outcomes. My meeting with my new surgeon would be deceptively mild and somewhat entertaining. The entertainment was due to the medical students present during my initial exam with the doctor.
Now in my short-yet-intense experience with our medical system I have met and been examined and treated by a number of medical students. The day I met for my initial consult with my surgeon about my liver there were two bright-eyed and eager individuals that were keen to practice their skills upon my person. More manhandling. Actually man-and-woman-handling would be more accurate, as there was a representative from each gender, and that's the entertaining part.
A clinical physical exam is not designed (usually) to embarrass the patient, and we all assume that doctors maintain a certain detachment when performing these exams. During the course of my exam the male student did most of the poking and prodding. As the abdominal exam progressed there was a natural tendency to meander 'more south' to see the handiwork of the previous surgeon. Some clothing reshuffling was done to accomplish this, and I noticed that the female med student was observing the process in an oblique fashion. I couldn't resist pointing out that while she may be preserving my dignity, as a patient I would be much better off is she knew exactly what was going on. Fortunately for both of us the exam didn't last much longer and all were saved from any further awkwardness.
Ironically in a few weeks during my subsequent hospital stay, I would be visited by many med students and nurses-in-training. In one particularly well-remembered incident I would have four fresh young female faces looking down at me and not being at-all shy about poking and prodding me. But I digress.
Back in the exam room the doctor explained that the liver surgery was big and complicated, but I was young and strong. Yay me. A pre-procedure called a liver embolization would first be performed to reroute some blood flow from the bad lobe of the liver to the good lobe. I would also be sent to be assessed by an internal medicine specialist. Oh boy another doctor, that would make five different ones in about 7 months. Another CT would also be done to validate the liver embolization. It had only been six months at that time since my first colon surgery and I was beginning to recollect my emotions from that time. One more I would be thrust front and centre in our medical system. Once more I would undergo a surgery that would remove more than just a physical part of my being. I didn't realize it yet, but the upcoming surgery would affect me far more than my prior one.
My post-chemo interlude officially ended when the pre-procedure for the liver embolization was performed. While the hospital setting was now familiar and comfortable, my cancer journey was still taking me places I'd never been.
When I was first diagnosed with Cancer, the surgeon who performed the initial colonoscopy also performed my colon surgery. It was a blow to me when he left Windsor for brighter opportunities abroad. His associate however was lauded as the best for liver surgery, and my case was being handed over to him. Kismet. Karma. Kool. Whatever happens to me I have to admit that in my life I have never experienced as many traumatic events with as many positive outcomes. My meeting with my new surgeon would be deceptively mild and somewhat entertaining. The entertainment was due to the medical students present during my initial exam with the doctor.
Now in my short-yet-intense experience with our medical system I have met and been examined and treated by a number of medical students. The day I met for my initial consult with my surgeon about my liver there were two bright-eyed and eager individuals that were keen to practice their skills upon my person. More manhandling. Actually man-and-woman-handling would be more accurate, as there was a representative from each gender, and that's the entertaining part.
A clinical physical exam is not designed (usually) to embarrass the patient, and we all assume that doctors maintain a certain detachment when performing these exams. During the course of my exam the male student did most of the poking and prodding. As the abdominal exam progressed there was a natural tendency to meander 'more south' to see the handiwork of the previous surgeon. Some clothing reshuffling was done to accomplish this, and I noticed that the female med student was observing the process in an oblique fashion. I couldn't resist pointing out that while she may be preserving my dignity, as a patient I would be much better off is she knew exactly what was going on. Fortunately for both of us the exam didn't last much longer and all were saved from any further awkwardness.
Ironically in a few weeks during my subsequent hospital stay, I would be visited by many med students and nurses-in-training. In one particularly well-remembered incident I would have four fresh young female faces looking down at me and not being at-all shy about poking and prodding me. But I digress.
Back in the exam room the doctor explained that the liver surgery was big and complicated, but I was young and strong. Yay me. A pre-procedure called a liver embolization would first be performed to reroute some blood flow from the bad lobe of the liver to the good lobe. I would also be sent to be assessed by an internal medicine specialist. Oh boy another doctor, that would make five different ones in about 7 months. Another CT would also be done to validate the liver embolization. It had only been six months at that time since my first colon surgery and I was beginning to recollect my emotions from that time. One more I would be thrust front and centre in our medical system. Once more I would undergo a surgery that would remove more than just a physical part of my being. I didn't realize it yet, but the upcoming surgery would affect me far more than my prior one.
My post-chemo interlude officially ended when the pre-procedure for the liver embolization was performed. While the hospital setting was now familiar and comfortable, my cancer journey was still taking me places I'd never been.
The Chemo Chronicles - Part VII
If life is a game show, then I am in the bonus round. Or at least I got a bonus treatment. Turns out that while waiting for surgery to be set up I could squeeze in one more round of chemo.
To coin a phrase I've discussed my regular chemo sessions "ad nauseum", so to speak. Session number seven on August 6th was nothing different than the others that proceeded it. My energy was good, my appetite was great, I made homemade biscuits that weekend. Just a boring session. The only hiccup I would have was during the 5FU pump removal - no blood return after the disconnect. My 'turn and cough' routine was not enough to get it working. I had this chemo thing down pat, but was now thinking about the upcoming liver surgery.
One cannot have surgery immediately after chemo. For one thing I was being treated with Avastin, a chemical that inhibits the growth of new blood vessels and would totally screw up the healing and recovery process. My original surgical date was moved from Sept 16th to Sept 22nd, giving me roughly five weeks from the last session to my surgery. Hopefully enough time for the effects of the chemo chemicals to not interfere in the surgery.
Surgery. My second cancer-related surgery would be the biggest of my life. I was feeling so very confident after passing through my chemo process that initially I was not concerned. However as I went through the medical process that confidence would be tested. Liver surgery is a big deal, much bigger than my original colon surgery (which was hard enough to get through). With tumours on my liver however, my options were limited. Chemo alone could not remove them (although they did shrink). Up to now I've accepted all the risks and rewards that the treatment was giving me. Up to now I had followed my plan. I had to be true to myself, to continue to find the courage and means to follow through with that plan.
Following the plan began with meeting my surgeon. My journey was still mapped in well-charted territory. My hope was that it would not turn into my own personal Odyssey, I had no desire to experience the medical equivalent of Scylla and Charybdis.
To coin a phrase I've discussed my regular chemo sessions "ad nauseum", so to speak. Session number seven on August 6th was nothing different than the others that proceeded it. My energy was good, my appetite was great, I made homemade biscuits that weekend. Just a boring session. The only hiccup I would have was during the 5FU pump removal - no blood return after the disconnect. My 'turn and cough' routine was not enough to get it working. I had this chemo thing down pat, but was now thinking about the upcoming liver surgery.
One cannot have surgery immediately after chemo. For one thing I was being treated with Avastin, a chemical that inhibits the growth of new blood vessels and would totally screw up the healing and recovery process. My original surgical date was moved from Sept 16th to Sept 22nd, giving me roughly five weeks from the last session to my surgery. Hopefully enough time for the effects of the chemo chemicals to not interfere in the surgery.
Surgery. My second cancer-related surgery would be the biggest of my life. I was feeling so very confident after passing through my chemo process that initially I was not concerned. However as I went through the medical process that confidence would be tested. Liver surgery is a big deal, much bigger than my original colon surgery (which was hard enough to get through). With tumours on my liver however, my options were limited. Chemo alone could not remove them (although they did shrink). Up to now I've accepted all the risks and rewards that the treatment was giving me. Up to now I had followed my plan. I had to be true to myself, to continue to find the courage and means to follow through with that plan.
Following the plan began with meeting my surgeon. My journey was still mapped in well-charted territory. My hope was that it would not turn into my own personal Odyssey, I had no desire to experience the medical equivalent of Scylla and Charybdis.
The Chemo Chronicles - Part VI
The summer has been hot and humid, typical for this part of Canada this time of year. The air-conditioned Cancer Clinic provides relief for that as well. July 23rd is the sixth, and supposedly my last of the "original six" chemotherapy sessions. By now I am familiar with the process -bloodwork the day before, early-morning pills for the nausea prior to the chemo, registration at the Cancer Centre. Then the chemo itself. Today's session started off with me asking about my bloodwork. Up until this time I've been told 'It's OK'. Today I was shown the actual numbers. For those interested, we have:
Apparently these are good numbers. If it wasn't for Cancer I'd probably be considered healthy! A bright sunny day, full of promise and hope. My last chemo session was going to go off without a hitch, right?
Turns out there was a hitch. In the midst of a high-tech medical centre I couldn't get onto the internet! There I was with my trusty linux-based netbook (Acer Aspire One) seeing 4 bars of wifi signal, and getting nowhere. The medical staff were not aware of any technical problems that morning, but kindly called the hospital's IT helpdesk.
Now I've done a few decades of IT support in my career, and most problems reduce down to 'Cables & Connections'. Or a darn good power cycle. I didn't expect a no-internet-connectivity issue to be a huge deal, so imagine my surprise when I saw not one but three IT support folks making their way towards me. I could tell they were IT support because they were younger than me and were not wearing hospital scrubs. As they approached they asked if I was the one who couldn't get on the internet. Being as there were only a handful of folks in the room, and I was the only with a computer on my lap, I acknowledged my predicament and suggested that they power-cycle the WAP as I was not getting an IP address.
"Have you got the right password" I was asked. No, I don't have an IP address, so no web page can be displayed, ergo no password prompting.
"Have you tried another access point?" was the follow-up question in true Helpdesk troubleshooting style. I looked at the length of plastic tubing running from my chest to the pump on my IV pole, replete with numerous bags of various liquids. Then I looked at the questioner. Then I looked again at the length of plastic tubing running from my chest to the pump on my IV pole, replete with numerous bags of various liquids. Then again at the questioner. "Ummm, no" was my cautious reply.
"Mind if we borrow your laptop?" How could I refuse? Clearly these three IT folks were taking a real interest in my situation. Plus they didn't think to bring a laptop with them. With three of them on the case (and my laptop) this wouldn't take long.
Time passes. My IV's are being changed, I get my shots. No sign of those IT helpdesk guys or my netbook. More time passes, my chemo session is near to finishing when a new person bearing my netbook shows up. Turns out the IT manager wanted to meet the patient who runs linux! I was briefly tempted to change my 'chemo bear' to a 'chemo penguin' but didn't want to upset Linus Torvalds. The IT support folks managed to fix whatever the problem was and I was now able to surf the internet. However my chemo session for that day was nearly done. At least I could say I was entertained!
My remaining weekend consisted of me napping, with visits from good friends bringing gifts. One family brought over homemade bread (still warm!) while my old university roommate (the one with the cheesy moustache ) brough a computer kit for me to assemble. The kit consisted of parts of a computer that used to work. Some assembly required. It now runs yet another linux distribution and more virtual machines. Being a geek is cool.
What is even cooler is that I made it through the first six chemotherapy sessions, as planned. I was lucky in that the side effects of the treatments did not incapacitate me to the same degree as others less fortunate. I have been extremely fortunate to have had a great medical team working for me. That team would continue to work with me through the fall. I would meet with the surgeon who would perform my liver surgery. I would have an extra chemo session while waiting for the surgery opportunity. I would have time to enjoy the waning of Summer and experience the beginnings of a glorious Fall. I would have hope to sustain me.
WBC 5.6
HGB 132
Platelet 162
Creatine 66
and my Blood pressure this time was 129/80Apparently these are good numbers. If it wasn't for Cancer I'd probably be considered healthy! A bright sunny day, full of promise and hope. My last chemo session was going to go off without a hitch, right?
Turns out there was a hitch. In the midst of a high-tech medical centre I couldn't get onto the internet! There I was with my trusty linux-based netbook (Acer Aspire One) seeing 4 bars of wifi signal, and getting nowhere. The medical staff were not aware of any technical problems that morning, but kindly called the hospital's IT helpdesk.
Now I've done a few decades of IT support in my career, and most problems reduce down to 'Cables & Connections'. Or a darn good power cycle. I didn't expect a no-internet-connectivity issue to be a huge deal, so imagine my surprise when I saw not one but three IT support folks making their way towards me. I could tell they were IT support because they were younger than me and were not wearing hospital scrubs. As they approached they asked if I was the one who couldn't get on the internet. Being as there were only a handful of folks in the room, and I was the only with a computer on my lap, I acknowledged my predicament and suggested that they power-cycle the WAP as I was not getting an IP address.
"Have you got the right password" I was asked. No, I don't have an IP address, so no web page can be displayed, ergo no password prompting.
"Have you tried another access point?" was the follow-up question in true Helpdesk troubleshooting style. I looked at the length of plastic tubing running from my chest to the pump on my IV pole, replete with numerous bags of various liquids. Then I looked at the questioner. Then I looked again at the length of plastic tubing running from my chest to the pump on my IV pole, replete with numerous bags of various liquids. Then again at the questioner. "Ummm, no" was my cautious reply.
"Mind if we borrow your laptop?" How could I refuse? Clearly these three IT folks were taking a real interest in my situation. Plus they didn't think to bring a laptop with them. With three of them on the case (and my laptop) this wouldn't take long.
Time passes. My IV's are being changed, I get my shots. No sign of those IT helpdesk guys or my netbook. More time passes, my chemo session is near to finishing when a new person bearing my netbook shows up. Turns out the IT manager wanted to meet the patient who runs linux! I was briefly tempted to change my 'chemo bear' to a 'chemo penguin' but didn't want to upset Linus Torvalds. The IT support folks managed to fix whatever the problem was and I was now able to surf the internet. However my chemo session for that day was nearly done. At least I could say I was entertained!
My remaining weekend consisted of me napping, with visits from good friends bringing gifts. One family brought over homemade bread (still warm!) while my old university roommate (the one with the cheesy moustache ) brough a computer kit for me to assemble. The kit consisted of parts of a computer that used to work. Some assembly required. It now runs yet another linux distribution and more virtual machines. Being a geek is cool.
What is even cooler is that I made it through the first six chemotherapy sessions, as planned. I was lucky in that the side effects of the treatments did not incapacitate me to the same degree as others less fortunate. I have been extremely fortunate to have had a great medical team working for me. That team would continue to work with me through the fall. I would meet with the surgeon who would perform my liver surgery. I would have an extra chemo session while waiting for the surgery opportunity. I would have time to enjoy the waning of Summer and experience the beginnings of a glorious Fall. I would have hope to sustain me.
Wednesday, November 10, 2010
The Chemo Chronicles - Part V
CHEMO #5 (to the tune of Mambo #5)
Ladies and gentleman, Chemo #5..
One, two, three-four-five,
taking my chemo, to stay alive
sittin' down with my IV on...
in this chair, until it's all gone!
poppin' a Zofran and Decadron so no nausea like before
just don't wanna, puke up on the floor
A little bit of Cathy to put the IV in
A little bit of Marg, to push the chemo through
A little bit of Lois, with my Avastin
A little injection from Joan and nurse Terry too
There's Marg
and Hannah
and Marg #2
and every single one
will take care of you.
These are some of the wonderful nurses who I saw every two weeks; my humble thanks to each and every one (and apologies for those that I missed). The crew at the Windsor Cancer Centre are the absolute best.
My fifth chemo session that Friday (July 9) started off with a problem: no blood return. Generally, before the IV can be inserted the port is flushed. Next, blood is drawn back to make sure that everything is working. In this instance no blood return meant a problem. Strong measures were now required: I turned my head and coughed. Think of the Three Amigos Salute. Strange medicine but it worked! I watched with a certain detachment as my blood made its way up the plastic tube. My nurse pronounced my IV Port ready for that day's session. Perhaps I was not so relaxed and calm as I thought; my blood pressure was 139/90 that morning.
This session itself was as energy-draining as all my prior ones, nothing new there. I slept a lot during that weekend while wearing the 5FU bottle. However I had to force myself to keep drinking water; it was tasteless and unappetizing. Sometimes I would try lemon juice in my water, or drink fruit juices for variety, anything to just wake up the palette. I still routinely rinsed my mouth with salt water and baking soda. Bleah. It was only after the 5FU bottle was removed that I start to regain some energy (enough to build Chemo Clock #5 at any rate). The chemo weekend, as usual, was low-key. I endured it as much as I ignored it.
Monday I was feeling much better. So much better in fact that I rode my bike to my workplace (only a few minutes away) and "crashed" the annual company BBQ lunch! Had a really great time, the staff there were surprised and pleased to see me. Tired and napped after I returned home, but hey, biking is fun, so off I went again later that afternoon. Biking is invigorating and recharged me; that night I spent some time in the ol' workshop experimenting with a VFD tube clock. I have no life apparently.
My routine for chemotherapy would continue like this for the next (and what I believe to be the last) session. There would be some more visits from my family in the weeks to come, my sister would visit and make her version of our mom's famous Spaghetti Sauce! Summer was flying by, my days were filled with whatever I delighted in doing, or in doing nothing at all. I felt strong (mostly) and I felt confident (usually) that I had a future.
That future still required dealing with the tumours on my liver. The fight would continue through the fall, and I would be tested physically and emotionally once more.
Ladies and gentleman, Chemo #5..
One, two, three-four-five,
taking my chemo, to stay alive
sittin' down with my IV on...
in this chair, until it's all gone!
poppin' a Zofran and Decadron so no nausea like before
just don't wanna, puke up on the floor
A little bit of Cathy to put the IV in
A little bit of Marg, to push the chemo through
A little bit of Lois, with my Avastin
A little injection from Joan and nurse Terry too
There's Marg
and Hannah
and Marg #2
and every single one
will take care of you.
These are some of the wonderful nurses who I saw every two weeks; my humble thanks to each and every one (and apologies for those that I missed). The crew at the Windsor Cancer Centre are the absolute best.
My fifth chemo session that Friday (July 9) started off with a problem: no blood return. Generally, before the IV can be inserted the port is flushed. Next, blood is drawn back to make sure that everything is working. In this instance no blood return meant a problem. Strong measures were now required: I turned my head and coughed. Think of the Three Amigos Salute. Strange medicine but it worked! I watched with a certain detachment as my blood made its way up the plastic tube. My nurse pronounced my IV Port ready for that day's session. Perhaps I was not so relaxed and calm as I thought; my blood pressure was 139/90 that morning.
This session itself was as energy-draining as all my prior ones, nothing new there. I slept a lot during that weekend while wearing the 5FU bottle. However I had to force myself to keep drinking water; it was tasteless and unappetizing. Sometimes I would try lemon juice in my water, or drink fruit juices for variety, anything to just wake up the palette. I still routinely rinsed my mouth with salt water and baking soda. Bleah. It was only after the 5FU bottle was removed that I start to regain some energy (enough to build Chemo Clock #5 at any rate). The chemo weekend, as usual, was low-key. I endured it as much as I ignored it.
Monday I was feeling much better. So much better in fact that I rode my bike to my workplace (only a few minutes away) and "crashed" the annual company BBQ lunch! Had a really great time, the staff there were surprised and pleased to see me. Tired and napped after I returned home, but hey, biking is fun, so off I went again later that afternoon. Biking is invigorating and recharged me; that night I spent some time in the ol' workshop experimenting with a VFD tube clock. I have no life apparently.
My routine for chemotherapy would continue like this for the next (and what I believe to be the last) session. There would be some more visits from my family in the weeks to come, my sister would visit and make her version of our mom's famous Spaghetti Sauce! Summer was flying by, my days were filled with whatever I delighted in doing, or in doing nothing at all. I felt strong (mostly) and I felt confident (usually) that I had a future.
That future still required dealing with the tumours on my liver. The fight would continue through the fall, and I would be tested physically and emotionally once more.
Monday, November 8, 2010
Mending Fences
An opportunity presented itself this summer to gather all three brothers together for the first time in several years. Just the brothers, no other relatives. A time to reconnect. A time to forgo the usual routine that happens at traditional family gatherings. A time to mend fences.
I speak of a literal fence. The one at the back of my driveway. The one that was so badly in need of repair that even birds were afraid to sit on it lest it collapse on them. Yes, my privacy fence 'twixt the street and back yard was so far gone that an ill-tempered butterfly could probably knock it down. I had looked at replacing the old fence last summer. I watched 'This Old House'. I read about fences on the internet. I knew what to do. I called for help. Let me explain why: Power Tools.
Man is distinguished on this planet by his ability to use tools. Opposable thumbs are the characteristic which puts tool using into the forefront. Apparently two thumbs means one can use tools. Unfortunately I have 10 thumbs. Ironic that the phrase "all thumbs" is the antithesis of a tool users. So using Power Tools may actually 'cut down' on the number of thumbs and fingers I actually possess, and other, less-frequently-used-but-still-desirable body parts. My brothers are competent at building stuff, plus they work cheap: for beer. Plus they brought their own beer.
Building a fence was an opportunity for me to reconnect with my brothers. Cancer doesn't know how to have fun, but my brothers do. This visit was not about comforting a relative with Cancer, it was simply about family.
It was a perfect July day, not too hot, little bit of a breeze, and lots of sunshine. Neighbors who wandered over (all guys wondering if they should be bringing tools...) were greeted in true Northern Ontario hospitality: with beer. The fence building progressed, albeit slowly, with lots of breaks. The real reason of course was to visit with the big brother. By the end of the day the job was done.
My role in this project was "supervisor in charge of lawn chairs". My role in the family will still continue to be 'Big Brother'. Hopefully for a long time yet!
 | |
| Old fence. |
Man is distinguished on this planet by his ability to use tools. Opposable thumbs are the characteristic which puts tool using into the forefront. Apparently two thumbs means one can use tools. Unfortunately I have 10 thumbs. Ironic that the phrase "all thumbs" is the antithesis of a tool users. So using Power Tools may actually 'cut down' on the number of thumbs and fingers I actually possess, and other, less-frequently-used-but-still-desirable body parts. My brothers are competent at building stuff, plus they work cheap: for beer. Plus they brought their own beer.
Building a fence was an opportunity for me to reconnect with my brothers. Cancer doesn't know how to have fun, but my brothers do. This visit was not about comforting a relative with Cancer, it was simply about family.
 | |
| A scene reminiscent of 'Witness'? |
It was a perfect July day, not too hot, little bit of a breeze, and lots of sunshine. Neighbors who wandered over (all guys wondering if they should be bringing tools...) were greeted in true Northern Ontario hospitality: with beer. The fence building progressed, albeit slowly, with lots of breaks. The real reason of course was to visit with the big brother. By the end of the day the job was done.
 | |
| A thing of beauty, and reminder of better times to come. |
The Chemo Chronicles - Part IV
Thursday June 24th, 2010 was the day before my fourth round of chemotherapy. Naturally this meant a visit to the Cancer Centre clinic for routine bloodwork, I was extremely fortunate that no problems were ever found with my blood chemistry and I was able to make every chemotherapy appointment.
By now we're officially into summer and I was taking full advantage of the great weather - biking was now one of my primary activities and would remain so until my Liver surgery in September. However, as is the case during a 'chemo weekend', my energy level barely climbs out of the cellar. I used my pedometer to measure one walk I took: 3,650 steps. That's about the distance from my house to the nearest Tim's coffee shop and back. The walk itself is at a much slower pace than my usual cadence, and requires a break every so often, so my chest and arms don't feel like they're crushing the life out of me.
No new side effects, everything is proceeding without incident. I'm cruising through this chemo thing. My "new normal" is a comfortable fit for my lifestyle and I can pretty much go through the process on autopilot. Naturally this would foreshadow a change in any cheesy novel. Since I'm a cheesy kind of guy, this would seem to be the time to find out some unsettling news: my surgeon who performed my Colon Cancer surgery was leaving Windsor.
Up until now I have avoided discussing the implicit faith one has in their doctor. The medical system may be large and intimidating, but the primary care physician provide the face and humanity that makes this process work. My doctor was leaving for new opportunities. He is a fabulous surgeon, and the one who performed my colonoscopy. He gave me the news of my cancer and it's extent. He gave me a plan, and with it, hope. He performed my colon cancer surgery and was, by all accounts, very pleased with the results. The news he was leaving was surprising and somewhat demoralizing. My doctor had become the confident symbol of hope every patient looks for.
As things would turn out, my treatment would move to a surgeon pre-eminent in the realm of performing Liver surgery. Life works in funny ways, there are unlooked-for synergies and unexpected, happy coincidences. Case in point, my "Lifestyles for Cancer Patients" seminar was scheduled for the evening of the same day I found that my doctor was leaving.
These seminars were a once-a-week event, 3 hours in duration, and consisted of cancer patients and their caregivers being led through the process of learning to deal with with the effects of their illness. This week we discussed, appropriately enough, the emotional impact of cancer on our lives. The key aspect of the emotional journey is characterized by the descent into a state where the patient becomes depressed and unable to cope. The method for getting out of this state, of continuing the journey, is called "JOY" - Journey Onward, Yielding. That evening I had a practical demonstration of this concept.
"Yielding" in the context above does not mean "give up". Nor does it mean trying to avoid all obstacles. In essence it means yield to the path required to continue the journey. For me this meant that I had to accept my doctor's decision to leave and accept and understand that he was not taking hope with him; the hope is something I carried within me.
Given what I had undergone so far, I was initially surprised, and as I mentioned earlier, somewhat demoralized by my surgeon's departure. I was nowhere near depressed and knew that I would still have superb medical care. In retrospect, it made me realize that blind faith in a medical practitioner or process is not enough; we have to advocate for ourselves, we have to perform our own 'health due-diligence'. Diet, exercise, lifestyle, all the boring healthy stuff. That's our job. Once we cease being a patient, we are now responsible for maintaining our health in a reasonable fashion. Apparently there's work involved. Ugh. For the first time in my life I enrolled in a weekly exercise class.
Walking and stretching, once a week. Sounds easy. It wasn't. I would be tired and sore after the class; stretching is hard work! I could walk really well, but just trying to balance on one foot without clinging to the support chair (or the person next to me) was difficult. Most of the folks in the class were women, and shall we say, had a history of more Earth orbits abound Sol than I did. Some by a large margin. And yet they all did these exercises without the grimacing, grunting and gut-wrenching that I seemed to experience. I think I amused them. Some of the exercises we did were based on Tai Chi moves; slow and focussed; some were way more difficult, in part because our instructor was channeling a Marine Drill sergeant.
In the days that followed my routine for chemo treatment never really varied, I learned to deal with my cancer a little bit at a time, and I would reconnect with my friends and family. Especially my family, as I have no blood relatives in the city I live in, and my siblings are scattered all over the province. There would be visits from them, and one memorable visit where some fence-mending would take place.
By now we're officially into summer and I was taking full advantage of the great weather - biking was now one of my primary activities and would remain so until my Liver surgery in September. However, as is the case during a 'chemo weekend', my energy level barely climbs out of the cellar. I used my pedometer to measure one walk I took: 3,650 steps. That's about the distance from my house to the nearest Tim's coffee shop and back. The walk itself is at a much slower pace than my usual cadence, and requires a break every so often, so my chest and arms don't feel like they're crushing the life out of me.
No new side effects, everything is proceeding without incident. I'm cruising through this chemo thing. My "new normal" is a comfortable fit for my lifestyle and I can pretty much go through the process on autopilot. Naturally this would foreshadow a change in any cheesy novel. Since I'm a cheesy kind of guy, this would seem to be the time to find out some unsettling news: my surgeon who performed my Colon Cancer surgery was leaving Windsor.
Up until now I have avoided discussing the implicit faith one has in their doctor. The medical system may be large and intimidating, but the primary care physician provide the face and humanity that makes this process work. My doctor was leaving for new opportunities. He is a fabulous surgeon, and the one who performed my colonoscopy. He gave me the news of my cancer and it's extent. He gave me a plan, and with it, hope. He performed my colon cancer surgery and was, by all accounts, very pleased with the results. The news he was leaving was surprising and somewhat demoralizing. My doctor had become the confident symbol of hope every patient looks for.
As things would turn out, my treatment would move to a surgeon pre-eminent in the realm of performing Liver surgery. Life works in funny ways, there are unlooked-for synergies and unexpected, happy coincidences. Case in point, my "Lifestyles for Cancer Patients" seminar was scheduled for the evening of the same day I found that my doctor was leaving.
These seminars were a once-a-week event, 3 hours in duration, and consisted of cancer patients and their caregivers being led through the process of learning to deal with with the effects of their illness. This week we discussed, appropriately enough, the emotional impact of cancer on our lives. The key aspect of the emotional journey is characterized by the descent into a state where the patient becomes depressed and unable to cope. The method for getting out of this state, of continuing the journey, is called "JOY" - Journey Onward, Yielding. That evening I had a practical demonstration of this concept.
"Yielding" in the context above does not mean "give up". Nor does it mean trying to avoid all obstacles. In essence it means yield to the path required to continue the journey. For me this meant that I had to accept my doctor's decision to leave and accept and understand that he was not taking hope with him; the hope is something I carried within me.
Given what I had undergone so far, I was initially surprised, and as I mentioned earlier, somewhat demoralized by my surgeon's departure. I was nowhere near depressed and knew that I would still have superb medical care. In retrospect, it made me realize that blind faith in a medical practitioner or process is not enough; we have to advocate for ourselves, we have to perform our own 'health due-diligence'. Diet, exercise, lifestyle, all the boring healthy stuff. That's our job. Once we cease being a patient, we are now responsible for maintaining our health in a reasonable fashion. Apparently there's work involved. Ugh. For the first time in my life I enrolled in a weekly exercise class.
Walking and stretching, once a week. Sounds easy. It wasn't. I would be tired and sore after the class; stretching is hard work! I could walk really well, but just trying to balance on one foot without clinging to the support chair (or the person next to me) was difficult. Most of the folks in the class were women, and shall we say, had a history of more Earth orbits abound Sol than I did. Some by a large margin. And yet they all did these exercises without the grimacing, grunting and gut-wrenching that I seemed to experience. I think I amused them. Some of the exercises we did were based on Tai Chi moves; slow and focussed; some were way more difficult, in part because our instructor was channeling a Marine Drill sergeant.
In the days that followed my routine for chemo treatment never really varied, I learned to deal with my cancer a little bit at a time, and I would reconnect with my friends and family. Especially my family, as I have no blood relatives in the city I live in, and my siblings are scattered all over the province. There would be visits from them, and one memorable visit where some fence-mending would take place.
Saturday, November 6, 2010
The Hobbyist
 | |
| Me at my workbench, Photograph courtesy of Alyssa C. |
When I ride my bike I can be happy. When I ride my bike I have hope.
Bike riding was only one of the hobbies that have become very important to my well-being and focus on hope. My hobbies distract me from the unanswerable question.
Being on sick leave for so long the standard question I am asked is if I am bored. I can honestly say that I am not bored, and that my activities both physical and mental have helped me cope with my situation. I have seen a glimmer of what retirement might look like, should my journey continue that far. What helps me get through the long days are some of my all-time favorite hobbies: electronics, computers, chess, bike riding, snooker...pretty standard for geeks.
Of course we geeks do a lot on the internet. One day while surfing the 'net I came across the site that inspired my fascination for clocks, featuring the Single Digit Numitron Clocks. These clocks are a mix of retro-style incandescent display tubes and modern microprocessor. I cannot claim any credit to the ideas or designs, simply that I enjoyed their novelty and have a great deal of fun building various versions. My obsession has prevailed for several years, and during this time I've probably built over 40 such devices. You can see some of them here.
The clock shows time in single-digit format. Meaning if the time is 9:36AM, it will display '0', then '9', then '3' and finally '6', roughly at the rate of a digit a second. Novelty is its charm. The display tubes were once manufactured in the early '70's and '80's, however the ubiquitous seven-segment LED display has proven more durable, longer lasting and use less power. Now the Numitron tubes are only available via eBay. The stock of tubes is finite however, and eventually they'll all be gone. Metaphors of life aside, it's just a heck of a lot of fun to make them and give them away.
In previous posts I have mentioned the incredible amount of support and kindness that I've received from so many people. To show my gratitude I set a goal for myself: for every round of chemotherapy, I would build one 'Chemo Clock' and present it to someone I felt deserved more than just a 'thank you'.
So how does one build a chemo clock? Glad you asked! It starts with making a Printed Circuit Board (PCB).
Next the parts are assembled.
Once the parts are assembled I solder them into the PCB itself
And more assembly
Fully assembled and tested
The video shows the clock in operation. The time displayed is 11:13. The clock is 24hour format, so if the time was say 4:05PM, it would display '1','6','0','5'.
I am grateful to all who have helped me. Chemo Clocks are my hobby, my therapy and my gift for those who have aided in my journey.
Hobbies as a tool to fight Cancer? Not all battles are won in the chemo chair. Cancer is not a simple thing to overcome, but simple things can make life easier, and in turn make the journey a bit smoother.
Wednesday, November 3, 2010
The Chemo Chronicles - Part III
Friday June 11, 2010 was my 3rd chemo session. Halfway there according to the original schedule. Missed taking my morning pre-chemo pills, but not to worry, the nice folks at the Cancer Centre had more on hand. Today I would receive my first Avastin treatment in addition to the 'regular' chemo meds.
Avastin is a drug that inhibits the growth of new blood vessels. As tumours grow new blood vessels get created and become the tumours' food supply. We don't want that. However one can't have Avastin too soon after surgery, as there is a chance freshly-healing incisions will start to open up. We don't want that either, so I started to receive it half-way through my treatment. The initial dosage of Avastin would add another 90 minutes to my session in the chair. Thereafter each dosage would be decreased through the remaining sessions.
Since my chemo session normally began around 9am and finshed around noon, I would generally go home and have lunch (I was getting over that whole chemo-makes-me-not-eat thing). However the extra time it took for the Avastin treatment made me eligible for a fine Hospital Lunch! Tuna Sandwich and Soup and Milk and Tea. I don't like Tea. But the wonderful volunteers (some who are survivors or have had loved ones enter into the process) saw to my needs and brought me coffee. Genuinely grateful for this, yet another Deliberate Act of Kindness that I would encounter time and again throughout my journey. This only reinforces my belief that Technology provides one part of the cure; people provide the remainder.
Speaking of technology, my 5FU pump did not want to cooperate. My chemo sessions were on a Friday and I would wear the pump until Sunday afternoon, roughly some 48 hours. Now the little balloon inside the bottle is supposed to push the solution into me slowly, measurably and I should observe gradual changes. Saturday I did not notice much, if any change. I also had another indication that something wasn't working: I felt too good!
Feeling good as a symptom that something is wrong is just another indicator that Cancer treatment is different. I had to call the Cancer Centre, who in turn got hold of my Oncologist ("Hi Doc I think I have a problem - I feel great!"). I was directed to go see the fine folks at the Bayshore Clinic (where I get my pump disconnected anyways).
Off we go to the clinic to get my pump checked out. It was disconnected and reconnected, however the culprit appeared to be a slight, almost invisible 'pinch' in the plastic tubing, wrapped tightly in tape and covered by more tape attaching it to my port. This was all fixed Saturday afternoon. By Saturday evening I knew it was working without even having to examine the bottle, because I felt like crap.
Even though I didn't feel the greatest I was still able to do stuff around the house. In particular I worked on some of my electronics projects. My hobby/passion/demented obsession is making small electronics projects. In particular I make numitron and VFD single digit clocks. In fact while I was in the hospital for my first surgery I was concentrating on the wiring and layout of a VFD clock
Recall several blog entries ago that I was supposed to give one to my niece for her graduation? Well this is one of the prototypes. It was this sort of hobby that would not only get me up and around, but force me to think (a challenge before cancer some would say). The upshot of this electronics tinkering was the creation of the 'chemo clocks'. The chemo clocks are single digit numitron clocks, with the circuit placed inside an inverted paperclip holder.
What I wanted to do is give out these little projects as tokens of my thanks and appreciation to those who have helped me throughout my journey. I originally started with Six, then seven, then...it's amazing..I cannot find ways to express my thanks to all the fine people who have helped me. I currently have a backlog to make and give away.
It was not mere idleness that I engaged in my hobbies during and between treatments; there's a positive feeling in being able to create, to express one's self in a tangible fashion when presented with overwhelming challenges. You are distracted from that always-in-your-mind THING that dominates your life. This observation was presented in a seminar by a remarkable 'cancervivor' , which I found extremely moving and enlightening. People with everyday courage living extraordinary lives.
I was halfway through my chemo treatment. Still to come would be the CT scan of my liver. My colon surgery was healing really well, and I would begin bike riding again. Shorter distances, around 20km but by the end of summer I would easily be riding twice that.
Avastin is a drug that inhibits the growth of new blood vessels. As tumours grow new blood vessels get created and become the tumours' food supply. We don't want that. However one can't have Avastin too soon after surgery, as there is a chance freshly-healing incisions will start to open up. We don't want that either, so I started to receive it half-way through my treatment. The initial dosage of Avastin would add another 90 minutes to my session in the chair. Thereafter each dosage would be decreased through the remaining sessions.
Since my chemo session normally began around 9am and finshed around noon, I would generally go home and have lunch (I was getting over that whole chemo-makes-me-not-eat thing). However the extra time it took for the Avastin treatment made me eligible for a fine Hospital Lunch! Tuna Sandwich and Soup and Milk and Tea. I don't like Tea. But the wonderful volunteers (some who are survivors or have had loved ones enter into the process) saw to my needs and brought me coffee. Genuinely grateful for this, yet another Deliberate Act of Kindness that I would encounter time and again throughout my journey. This only reinforces my belief that Technology provides one part of the cure; people provide the remainder.
Speaking of technology, my 5FU pump did not want to cooperate. My chemo sessions were on a Friday and I would wear the pump until Sunday afternoon, roughly some 48 hours. Now the little balloon inside the bottle is supposed to push the solution into me slowly, measurably and I should observe gradual changes. Saturday I did not notice much, if any change. I also had another indication that something wasn't working: I felt too good!
Feeling good as a symptom that something is wrong is just another indicator that Cancer treatment is different. I had to call the Cancer Centre, who in turn got hold of my Oncologist ("Hi Doc I think I have a problem - I feel great!"). I was directed to go see the fine folks at the Bayshore Clinic (where I get my pump disconnected anyways).
Off we go to the clinic to get my pump checked out. It was disconnected and reconnected, however the culprit appeared to be a slight, almost invisible 'pinch' in the plastic tubing, wrapped tightly in tape and covered by more tape attaching it to my port. This was all fixed Saturday afternoon. By Saturday evening I knew it was working without even having to examine the bottle, because I felt like crap.
Even though I didn't feel the greatest I was still able to do stuff around the house. In particular I worked on some of my electronics projects. My hobby/passion/demented obsession is making small electronics projects. In particular I make numitron and VFD single digit clocks. In fact while I was in the hospital for my first surgery I was concentrating on the wiring and layout of a VFD clock
What I wanted to do is give out these little projects as tokens of my thanks and appreciation to those who have helped me throughout my journey. I originally started with Six, then seven, then...it's amazing..I cannot find ways to express my thanks to all the fine people who have helped me. I currently have a backlog to make and give away.
It was not mere idleness that I engaged in my hobbies during and between treatments; there's a positive feeling in being able to create, to express one's self in a tangible fashion when presented with overwhelming challenges. You are distracted from that always-in-your-mind THING that dominates your life. This observation was presented in a seminar by a remarkable 'cancervivor' , which I found extremely moving and enlightening. People with everyday courage living extraordinary lives.
I was halfway through my chemo treatment. Still to come would be the CT scan of my liver. My colon surgery was healing really well, and I would begin bike riding again. Shorter distances, around 20km but by the end of summer I would easily be riding twice that.
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