My chemo schedule is every second Tuesday. I require blood work prior, to make sure that I'm not getting too sick. So on the Friday before my third chemo I went to get this chore over with. However I was informed by the lab staff that I was way too early. It seems that they prefer a 72 hour window, and felt that my results would be invalid at this point. With nothing else to do I left. Monday I was back again, waiting my turn and fulfilling my obligation as well as a couple of test tubes of my blood. If there were any concerns with the results of these tests, I'd find out tomorrow, the morning of next chemo.
Tuesday morning Sept. 29th and my morning routine starts. Pills, for the arthritis. Pills, for the allergies. Pills, for the chemo. Breakfast is a whole bunch of Fibre1 cereal and fruits. Washed down with glasses of water. Before I leave the house, one more pill -to keep me calm and help me manage my emotions during this treatment. Arriving at the Cancer Centre I walk up the the stairs to the chemotherapy lounge. Despite the brace on my right knee, I walk better up stairs than on level ground. I let the staff at the chemo suite know I've arrived. A band with my patient ID and other information is loosely wrapped around my wrist. Back to the lounge for more waiting. Eventually my name is called, and I hobble as best as I can to the room where I'll spend the next few hours getting chemically whacked.. My nurse confirms my name and date of birth as I'm being brought into the suite, and I'm assigned to a chair.
The Lorezapam must be working, I feel pretty calm as my nurse preps my IVPort for the start of treatment. As part of my usual preparation I've shaved a substantial amount of chest hair around the IV port area. The area is swabbed with what I assume is a disinfectant. The moment of truth begins with a brief pinprick, and session number three begins. More pills, I'm given three Decadron to help control any nausea symptoms. That and a shot later that morning to make sure I don't suffer a repeat of my first chemo.
I always feel fine the first hour or so. I get comfortable, set up my laptop go online and send a few emails. Lately I've taken to playing 5 minute online chess games with people around the world. My game sucks, but it helps pass the time. My energy and concentration are dropping the longer the session runs. It's now noon and what I call "chemo lethargy" is setting in. There's no desire for me to do anything but close my eyes at this point. Yet there is a nice surprise for me this time: one of my pharmacy friends stops by to see how I'm doing. Thoughtful as always, she has a nice card with words of courage within. She and I have had similar experiences, and while our paths diverge, it's always comforting to share with someone else who's gone through this experience. The words are not hollow sentiment, but a source of strength.
Shortly after 2PM my session is finished. I leave with my 5FU pump attached and carrying an extra roll of tape -my nurse was concerned that enough chest hair was being covered. I'm too tired to care, I just want to go home
First day with the 5FU pump is not too bad, I eat when I feel hungry, but have to force myself to drink liquids. Water doesn't seem as refreshing and never quenches my thirst during this time. This week I'm trying various juice boxes to introduce some variety. Apple juice tastes funny, but it's still better than the Banana Strawberry concoction, too sweet for my taste. In general during chemo I prefer the tart or acidic foods, something soft to munch versus crunchy. A noticeable side effect that continues even when the pump is removed are that my gums are very tender. Even my ultrasoft toothbrush, gingerly applied, leaves me spitting blood into the sink. So my new trick is to first rinse the brush in hot water, making it softer and pliable. This help. I sporadically gargle that old standby: saltwater and baking soda, although my dental hygienist wonders at how effective that is. I should inquire with my dentist for chemo-safe mouthwashes, as the typical over-the-counter mouthwashes and rinses are contra-indicated. I don't experience any nausea, but my stomach feels unsettled, a nervousness that's not placated by eating or drinking. I chalk this up to the 5FU side effect.
Fortunately no other major side effects seem to pop up this round. My goal now is to endure the next 46 hours until the pump is removed, and see how quickly I recover. I do confess that my recovery is longer than it once was. Back in 2010 I could almost guarantee being 'my old self' with 24 hours of the pump removal. However it's five years on, and my other physical ailments -the arthritis and knee problems, seem to conspire in keeping my physical activity to a minimum. This time I seem to have managed the side effects better, even with limited exercise -too cold this time to go bike riding, but next week promises to be the best that Fall can offer. For now I endure.
And the first night home with the pump I find I can't fall asleep at night. When I first arrived at home I took a nap, I was tired. Rested on the couch all day. Then when it's time for bed 11PM turns into 1AM, and then turns into 5AM. I still can't sleep. I resolve to take a sleeping pill if this happens again.
I basically drift through my second 5FU pump day, playing bad online chess, trying to read up on my electronics hobby. Things that used to hold my attention seem to require far more cerebral effort than I can muster. There's a lot of channel flipping, fortunately, there's a whack of DVD and YouTube entertainment. But I really don't want to be a couch potato, I want to do something. Later that night around 11PM I take my sleeping pill. We'll see how well I sleep tonight.
Third day of the chemo regimen, and I've noticed I slept for approximately 6 hours. While not refreshed as I had hoped, it was uninterrupted sleep. And today I have a scheduled disconnect time of 11AM, the earlier the better in my opinion. Aside from the sleep, this chemo has been calm, no serious side effects save the difficulty sleeping. The ResoroLax and Fibre1 are doing what they need to do, and as I would find out, it would keep working for several days after I stopped taking the RestoroLax. Something to keep in mind if you are planning to go out.
I get my 5FU pump removed by the CCAC nurses, who are trained in the art of Chemo-Fu. This explains their ninja-like appearance when they remove the pump: mask, goggles, double gloves, and the gown. I get a piece of paper strategically placed under the port so drops can't splash on my bare skin. And as always, the CCAC nurses have to gingerly remove the miles of tape that keeps the pump attached to my chest via those few remaining bits of chest hair. I should be used to having it ripped off by now, but it still hurts. I'm such a wimp.
Pump free before noon, and I am hungry. We go to Arby's and I'm craving a Beef 'n Cheddar with curly fries. Probably not the most nutritious meal for a colon cancer patient, but I want to satisfy the cravings. Takes two Beef 'n Cheddars for that, and that's about 1.5 of a B&C too much. Through the days of the pump it's fibre this, and fibre that. Sometimes I just want to satisfy the cravings, feel like my old self, forget that I have cancer.
The weather is getting marginally better through the week, and my non-chemo days looks promising. I'm able to get out of the house, enjoy the things like sipping my coffee by the river, going for short bike rides, and of course, visiting more doctors.
My recovery week has two appointments with my Oncologists. One is with the Radiation guy, the other with the Chemo guy. Both are located in the same facility, and both have me scheduled on different day. The chemo guys is first, and he's basically saying that if the CT shows the chemo is working, I can get more chemo. Yay. Perhaps I can arrange a break so it's not every two weeks. The most important part of the conversation was that it's my quality of life, my choice of what and when to take treatment. We don't discuss time lines, as it's futile to think about it at this stage.
My radiation guy was next. Essentially he's satisfied that the treatment to control the metastasis in my left leg worked -I'm not experiencing horrible leg pain and no fractures. If the CT I'm going to have in a few months shows anything else, I'm sure I'll hear about it. In the meantime he's discharging me, leaving my primary care with the chemo doc. One less doctor works for me. They all treat me pretty well, but I'd rather have one point of contact for my treatment.
It takes me several days to recover, careful of what I eat, as the RestorOLax seems to be working overtime. I'm not drinking enough water these days. I find that I don't have the energy or stamina for many activities, and some cramping whenever I eat. Those effects take days to go away. Gradually things begin to taste as they should. I still sleep no more than 4 or five hours, but at last I can rest. Perhaps it's the Avastin's workings, as I seem to bleed easier. The sink is bloody when I brush. Sneezing often produces bloody tissues.
Despite these annoyances I survive, I try to do more than endure. And in two weeks, I'll do this again.
Wednesday, October 21, 2015
Monday, September 28, 2015
The Chemo Chronicles - Part XIV
Tuesday September 15 was the second round of chemo, or the 14th if you count from when I first started in 2010. My return to chemotherapy two weeks prior was probably the hardest session I've ever had in my life, and caused me to seriously question my choice of treatment. With guidance from my doctors, support from my family and friends, I decided to focus on what I did wrong and attempt to correct my past mistakes.
To start with, my Oncologist addressed my apprehension about returning to chemo. For this I was prescribed a mild relaxant. Slip it under my tongue before leaving for my session and it would calm me down. Then there was my diet - I concentrated on a high-fibre diet (a gift from a friend in a similar situation was a box of Fibre1 cereal). More fruits and vegetables. More water. Exercising, despite my poor ability to walk was also a goal. I would bike more, and another friend would loan me her step-through bike so I would not strain my still-sore right knee. But the biggest change was one of acceptance, that this indeed would be my new life, that I am the one that needs to adapt if I am to continue my journey.
So far that morning I had eaten breakfast, taken my pre-chemo meds, and was so far not feeling anxious or sick. Already this was better than the previous time. My visit this time would see me remain in my chair, without any severe nausea. Uneventful for the most part, I sat patiently and watched as the various IV bags were changed. I still have Avastin as part of my therapy, and that alone added an hour to the process. My session had started roughly around 10:00AM, and I was finally ready to leave by 3:30PM, with my 5FU pump firmly attached and swathes of tape to hold it on. Apparently no matter how much of my chest hair I shave, it wouldn't be enough to escape the grasping, clinging tape.
I'm listless and lack any sort of energy or ambition by the time I arrive at home. However there's the feeling of satisfaction for this round, I didn't get sick, I don't feel emotionally overwhelmed. I still have two and half days to go before the 5FU pump is removed, then several days afterwards to recover. I hope I recover quicker. These sessions are similar to my previous ones five years ago, but not exactly the same. Five years ago I could walk without pain. This time I hobble and simply have no strength for all but the simplest activities.
As such, my activities consist mostly of being on the Internet, playing truly bad chess online, trying to figure out bits and pieces of electronics for my hobby. But I don't have the ability to concentrate very well. I'm tired and still don't sleep very long. Even so this sleep is better than last time. Previously I couldn't rest without feeling agitated, exhausted and unable to determine if I had actually slept. Part of that was my decision to not take some of the chemo meds supplied. Some side effects were jitteriness and constipation. This session, with the help of an aid called RestorLax I was able to manage my process much better. A higher fibre diet and more liquids helped. I was cautiously optimistic that I would fare better this session after only one day. For a change, I would be right in my assumption.
However not all was perfect. Usually I receive a call by the next day of my therapy as to when to report to the CCAC office for my 5FU pump disconnect. On a hunch I called the CCAC office, and they had not received any paperwork informing them of this action. I then proceeded to call the Cancer Center, informing them of this oversight. Late that afternoon I received my call with an appointment time for the next day. I was managing my condition.
Further management meant taking my arthritis medication -a pill and an ointment- so that my knees wouldn't cause me so much grief. It's all about finding comfort in an uncomfortable situation. Since I wasn't feeling any nausea and was eating fairly well, I opted to not take some of the chemo pills that had side effects of jitteriness and constipation. Note that this chemo causes constipation regardless, so management of this situation is important. However there would be other side effects, noticeable once the pump and was disconnected.
The disconnect happened Thursday afternoon. This will be slightly different, as I am to be part of a training session. My nurses are garbed in mask, gown and double-gloved. I have a mask and sterile cloth on my chest to protect my skin. I wait patiently as a good guinea pig should. As always the key to this process is something called a 'good blood return'. Basically blood is pulled out via the IVPort and pushed back in, demonstrating that the port is still functional. I leave the clinic free of the pump. There's now a shower in my future. Two chemo sessions down, four more to go. A CT would awaits me at the end of the sixth session to evaluate my condition and see if this treatment is working. But I don't look that far ahead anymore, my horizon is today and tomorrow.
With the pump now removed I would slowly regain some of my energy. I rode my bike when I felt I had the stamina. Rides of 20 minutes or less would be the norm, sometimes more, sometimes less. The duration was mostly dictated by my right knee. While my normal activities slowly returned, another chemo side effect presented itself: hair loss.
During my first bouts of chemo back in 2010 I had experienced some minor hair loss. At that time I went for a haircut to 'thin out the herd', and that seemed effective. My hair didn't seem to fall out, but didn't really grow either. This time my hair was falling out in rather large amounts. The bathtub after a shower looked as if a fur carpet had exploded. There was hair everywhere. Time for drastic measures. This haircut saw me with the shortest cut I've had since I was ten years old and my dad still cut my hair.
To start with, my Oncologist addressed my apprehension about returning to chemo. For this I was prescribed a mild relaxant. Slip it under my tongue before leaving for my session and it would calm me down. Then there was my diet - I concentrated on a high-fibre diet (a gift from a friend in a similar situation was a box of Fibre1 cereal). More fruits and vegetables. More water. Exercising, despite my poor ability to walk was also a goal. I would bike more, and another friend would loan me her step-through bike so I would not strain my still-sore right knee. But the biggest change was one of acceptance, that this indeed would be my new life, that I am the one that needs to adapt if I am to continue my journey.
So far that morning I had eaten breakfast, taken my pre-chemo meds, and was so far not feeling anxious or sick. Already this was better than the previous time. My visit this time would see me remain in my chair, without any severe nausea. Uneventful for the most part, I sat patiently and watched as the various IV bags were changed. I still have Avastin as part of my therapy, and that alone added an hour to the process. My session had started roughly around 10:00AM, and I was finally ready to leave by 3:30PM, with my 5FU pump firmly attached and swathes of tape to hold it on. Apparently no matter how much of my chest hair I shave, it wouldn't be enough to escape the grasping, clinging tape.
I'm listless and lack any sort of energy or ambition by the time I arrive at home. However there's the feeling of satisfaction for this round, I didn't get sick, I don't feel emotionally overwhelmed. I still have two and half days to go before the 5FU pump is removed, then several days afterwards to recover. I hope I recover quicker. These sessions are similar to my previous ones five years ago, but not exactly the same. Five years ago I could walk without pain. This time I hobble and simply have no strength for all but the simplest activities.
As such, my activities consist mostly of being on the Internet, playing truly bad chess online, trying to figure out bits and pieces of electronics for my hobby. But I don't have the ability to concentrate very well. I'm tired and still don't sleep very long. Even so this sleep is better than last time. Previously I couldn't rest without feeling agitated, exhausted and unable to determine if I had actually slept. Part of that was my decision to not take some of the chemo meds supplied. Some side effects were jitteriness and constipation. This session, with the help of an aid called RestorLax I was able to manage my process much better. A higher fibre diet and more liquids helped. I was cautiously optimistic that I would fare better this session after only one day. For a change, I would be right in my assumption.
However not all was perfect. Usually I receive a call by the next day of my therapy as to when to report to the CCAC office for my 5FU pump disconnect. On a hunch I called the CCAC office, and they had not received any paperwork informing them of this action. I then proceeded to call the Cancer Center, informing them of this oversight. Late that afternoon I received my call with an appointment time for the next day. I was managing my condition.
Further management meant taking my arthritis medication -a pill and an ointment- so that my knees wouldn't cause me so much grief. It's all about finding comfort in an uncomfortable situation. Since I wasn't feeling any nausea and was eating fairly well, I opted to not take some of the chemo pills that had side effects of jitteriness and constipation. Note that this chemo causes constipation regardless, so management of this situation is important. However there would be other side effects, noticeable once the pump and was disconnected.
The disconnect happened Thursday afternoon. This will be slightly different, as I am to be part of a training session. My nurses are garbed in mask, gown and double-gloved. I have a mask and sterile cloth on my chest to protect my skin. I wait patiently as a good guinea pig should. As always the key to this process is something called a 'good blood return'. Basically blood is pulled out via the IVPort and pushed back in, demonstrating that the port is still functional. I leave the clinic free of the pump. There's now a shower in my future. Two chemo sessions down, four more to go. A CT would awaits me at the end of the sixth session to evaluate my condition and see if this treatment is working. But I don't look that far ahead anymore, my horizon is today and tomorrow.
With the pump now removed I would slowly regain some of my energy. I rode my bike when I felt I had the stamina. Rides of 20 minutes or less would be the norm, sometimes more, sometimes less. The duration was mostly dictated by my right knee. While my normal activities slowly returned, another chemo side effect presented itself: hair loss.
During my first bouts of chemo back in 2010 I had experienced some minor hair loss. At that time I went for a haircut to 'thin out the herd', and that seemed effective. My hair didn't seem to fall out, but didn't really grow either. This time my hair was falling out in rather large amounts. The bathtub after a shower looked as if a fur carpet had exploded. There was hair everywhere. Time for drastic measures. This haircut saw me with the shortest cut I've had since I was ten years old and my dad still cut my hair.
So five days after this latest session I'm pump free, and apparently hair-free as well. As the week progressed I felt better. Days were spent just trying to enjoy life -bike ride, sitting at the river watching the ships, working on small projects. There would be another doctor' appointment, this one with a specialist to look at my right knee.
Compared to my last session this one was infinitely better. I may not be able to walk worth a damn for now, but my journey continues.
Thursday, September 10, 2015
The Chemo Chronicles - Part XIII
My only therapeutic option to mitigate the growing cancer in my left lung is chemotherapy, and it's strictly palliative. I would receive the same treatment that I first had back in May of 2010. Veteran of a dozen chemo sessions, I knew it would be hard but had the confidence that I would manage as I always did. That confidence would soon be broken, my emotional armour completely destroyed. I would question my decision to choose this treatment path, and, bitterly wonder if any of this was worth it.
That first day of September I had woken up early. I ate my usual breakfast of cereal, banana and blueberries. But something was not right Within an hour, before I had even left the house I was throwing up. This was the harbinger of my day to come.
I arrive at the Cancer Centre by 8:30am, shaky but feeling braver than I should have. The chemo room is as I remembered it. My nurse brings me to my chair -Number 7, must be a lucky chair I think. Preliminaries consist of going over the procedure, asking me questions from the ESAS survey. My scores for anxiety were concerning my nurse. But the process continued, and soon I found my shirt open, my chest being swabbed, and the moment of truth: with the nurse telling me to breathe out, the needle was pushed into my port. My thirteenth chemotherapy had formally started.
I was feeling OK, figuring the rest was just like before: get my computer out, sit back, wait for the pump, go home and rest. Every assumption I made from then on for the rest of the week would be wrong. It began with the anti-nausea meds.
I was given a pill to take that would help settle my stomach and thwart nausea. At the advice of my nurse, a preventative shot was also administered. Then another. As the hours grew I found I was cold, and asked for a blanket. My nurse put a cold cloth on my forehead. I was chilled and sniffling. That I was going to get sick was now inevitable. I told my nurse what was going to happen, and rather than scaring the patients by using the styrofoam cup at my lap, he helped me to the washroom. There I threw up for the second time that day. It took a while before I finally emerged, weak and shaky. Instead of going back to the chair however I was guided to a bed. For the first time ever, I was now in a room and given a bed to lie upon. Clearly my chemo was going badly.
But my ordeal was only beginning. Several nurses would check on me, discussing my nausea concerns. I still felt sick. Once more my shaky legs -I'm wearing a knee brace for a torn lateral meniscus - help me guide my attached IV pole to go back to the washroom, where I expunge the yellow bile that the chemo has put into my stomach. I return to my bed, but seeing the concern on the faces of the nurses tells me I'm in bad shape. Drastic measures -I'm put on a Gravol IV drip, and finally my nausea passes. Drowsiness causes my eyes to close. I rest, and I feel better. Ironically that would be the best rest I would have for the remainder of the week.
Because this was the first of a new round of chemotherapy, I was prescribed Avastin, to inhibit the growth of new blood vessels. Basically this cuts the supply routes for tumours. It's given in declining doses per session. As this is my first round, I had a 90 minute infusion of this drug. The last part of my treatment would be the attachment of the 5FU pump. I had brought my carrier with me -I had kept it all these years. Putting it on for the first time was somewhat bemusing, as the waist size was still set from my last session five years ago. I needed to let it out somewhat for today. With the pump on me, and three more bottles of medication to bring home, I was ready to leave. I had arrived at 8:30am, and by the time I left the Cancer Center is was nearly 3:15pm. It was a long day. And it would only get longer.
I would wear the 5FU pump for 46 hours. In theory it gets installed Tuesday, and Thursday afternoon it's removed. All I have to do is endure. For the first day, I was tired and listless, but couldn't really sleep. Only later that night would I find out how elusive sleep, and more importantly, rest, really was. I couldn't get comfortable, a side effect of the chemo was that every two hours I needed to use the bathroom. But due to my bad knees it was painful to hobble to the bathroom, using a cane. At time's I'd resort to crutches. Despite air conditioning it was hot. The entire region was under a heat alert for days, the humidity and heat cruelly confining me indoors for nearly the entire week. But the lack of sleep was more than fatiguing - I couldn't tell if I was sleeping or having waking dreams. The dreams were always agitated, disturbing and exceedingly exhausting. The only other time I've experienced this was when I was under major anaesthetic for my past surgeries. I was getting scared that I couldn't cope.
I was exhausted. And it got worse. I was restless, in pain from my knees. There was no position of comfort -on the bed, couch, chair. Desperate for any kind of comfort I tried sleeping on the floor with quilts and blankets to relieve the pressure on my knee. Nothing worked for long. I would get up through the night, trying to rest on one of the two couches, before eventually returning to bed. It wouldn't be until Labour day the following Monday before I felt I was getting actual rest. My eating was driven by random cravings -a necatarine here, maybe some cereal. Some soups were appetizing, others simply turned my stomach. For a small period I would lie in bed, craving a simple ham sandwich.
Tired, jittery, exhausted and in pain it was thus no surprise that my emotions were raw and brittle. I would find myself crying during those long nights of pain and sleeplessness, frustrated by the inability to do simple things -walk, sleep, eat. The pain in my knees exacerbated my emotional pain. My despair grew worse. And then when I thought I was bad, it managed to get even worse. My most despised chemo side effect manifested itself: constipation.
It might seem amusing, but this chemo is diabolical. First it siphons away your appetite, then causes intense pain while attempting to relieve your bowels. Because I was getting up to go the washroom every two hours, it was natural to try to find some relief. Only relief never came, just exhaustion and pain. The effects intensify even after my 5FU pump was removed Thursday. I don't remember details, just the gradual resignation that everything was hopeless. My despair grew, and my stock of hope evaporated. I seriously questioned my choice to take on this treatment. I just wanted to be done with chemo, done with cancer, done with life.
In my past chemo, the turning point was usually when the 5FU pump was removed Thursday afternoon sitting in the exam room, waiting for the nurse to remove the pump, I prayed I would soon feel better. My CCAC nurse evaluated my state and was concerned at how I was faring. For the only time I can recall, I was nearly sick again as the pump was disconnected. The profound feeling of helplessness was now pervading my every thought. That Thursday I thought I would be better in 24 hours, after all that's what I remembered. But that was five years ago, and my body simply wasn't up to the task.
Thursday night started the two worst days of my ordeal. Post chemo, post 5FU pump, I should be recovering. Instead I'm shaky, jittery. My sleep has left me exhausted, I cry at the smallest things My knee pain causes me so much discomfort that simply rolling over in bed is agony. I am depressed and despair that I'll ever feel comfortable. And through the next two days the discomfort from constipation grows. Fibre is key, water is key, patience is key. I can bring the first two into play, but I have no patience, no energy. It's a struggle to drag myself out of bed multiple times through the night to try to find relief. I'm just so tired, so damn emotional. I am bitterly angry at cancer for doing this to me. Not for the last time I seriously doubted my decision to engage in chemo.
For the first time in my life I'm saddened by the fact that I don't want to go on: With treatment. With suffering. With life. Why do I have to endure this? Where is the so-called quality of life? I am unable to think rationally anymore. I badly need rest and I am scared. I can't sleep. I just want this journey to be over. I want to give up.
Saturday, and a small glimmers of hope appear. My constipation battle is passing, so to speak, with help from stool softeners. My knee pain and sleep issues are still with me, and my appetite is returning I force myself get some exercise. I can't walk, but we have a small utilitarian exercise bike in our basement. I ride it for five minutes. Later I ride for 20 minutes. I have no stamina. My knee isn't adversely affected. Then an amazing resource comes to my assistance: one of my brothers has driven four hours to visit me this afternoon.
I rarely see my siblings, and given my current emotional state it was absolutely what I needed right then. We discussed in detail my emotional tribulations, and the core of my fears. When he left several hours later I was, if not calm, at least had a plan for the coming week. That plan would include meeting with my Oncologist to discuss my treatment and determine if it could be moderated to lessen the effects. Plus I figured out why my knees were bugging me: I had stopped taking my pain killers the day of chemo and never resumed them. Saturday night I would take one pill and was rewarded with, if not deep sleep, then a less pain-filled sleep.
I struggle to find my way back from those despair-filled depths of the previous week. By Tuesday -a week after chemo- I would feel somewhat rested but still not sleeping regularly. I ride my mountain bike, short distances, simply to be outside and get real exercise. I would relearn that I only have to enjoy my time now, when I feel good. I schedule an appointment with my Oncologist before my next treatment to discuss options and alternatives. I had drifted through my first treatment without conviction that there would be any benefit. I need a plan that it will make a difference, else I'm just wasting time.
By September 10th I've managed my day-to-day life better. It's only taken nine days, twice as long as it once did. Pain medication seems to help my sleeping. And I eat a lot of fibre. For the first time in months I worked on one of my small electronics projects. Am I getting better? Only time will tell. I have completed one chemo session, there are five more to go before an assessment will be done on how effective this treatment is. I hope I have the strength to see this through.
So my plan is simply this: continue with my treatment. Try to eat healthier. Find a way to manage my knee pain. Bike ride when I can. Prepare for the inevitable chemo side effects. Finally, learn to ask for help before I'm so overwhelmed that I feel there aren't any options left. There are always options, perhaps not ones we want to make, but ones that we can control.
That first day of September I had woken up early. I ate my usual breakfast of cereal, banana and blueberries. But something was not right Within an hour, before I had even left the house I was throwing up. This was the harbinger of my day to come.
I arrive at the Cancer Centre by 8:30am, shaky but feeling braver than I should have. The chemo room is as I remembered it. My nurse brings me to my chair -Number 7, must be a lucky chair I think. Preliminaries consist of going over the procedure, asking me questions from the ESAS survey. My scores for anxiety were concerning my nurse. But the process continued, and soon I found my shirt open, my chest being swabbed, and the moment of truth: with the nurse telling me to breathe out, the needle was pushed into my port. My thirteenth chemotherapy had formally started.
I was feeling OK, figuring the rest was just like before: get my computer out, sit back, wait for the pump, go home and rest. Every assumption I made from then on for the rest of the week would be wrong. It began with the anti-nausea meds.
I was given a pill to take that would help settle my stomach and thwart nausea. At the advice of my nurse, a preventative shot was also administered. Then another. As the hours grew I found I was cold, and asked for a blanket. My nurse put a cold cloth on my forehead. I was chilled and sniffling. That I was going to get sick was now inevitable. I told my nurse what was going to happen, and rather than scaring the patients by using the styrofoam cup at my lap, he helped me to the washroom. There I threw up for the second time that day. It took a while before I finally emerged, weak and shaky. Instead of going back to the chair however I was guided to a bed. For the first time ever, I was now in a room and given a bed to lie upon. Clearly my chemo was going badly.
But my ordeal was only beginning. Several nurses would check on me, discussing my nausea concerns. I still felt sick. Once more my shaky legs -I'm wearing a knee brace for a torn lateral meniscus - help me guide my attached IV pole to go back to the washroom, where I expunge the yellow bile that the chemo has put into my stomach. I return to my bed, but seeing the concern on the faces of the nurses tells me I'm in bad shape. Drastic measures -I'm put on a Gravol IV drip, and finally my nausea passes. Drowsiness causes my eyes to close. I rest, and I feel better. Ironically that would be the best rest I would have for the remainder of the week.
Because this was the first of a new round of chemotherapy, I was prescribed Avastin, to inhibit the growth of new blood vessels. Basically this cuts the supply routes for tumours. It's given in declining doses per session. As this is my first round, I had a 90 minute infusion of this drug. The last part of my treatment would be the attachment of the 5FU pump. I had brought my carrier with me -I had kept it all these years. Putting it on for the first time was somewhat bemusing, as the waist size was still set from my last session five years ago. I needed to let it out somewhat for today. With the pump on me, and three more bottles of medication to bring home, I was ready to leave. I had arrived at 8:30am, and by the time I left the Cancer Center is was nearly 3:15pm. It was a long day. And it would only get longer.
I would wear the 5FU pump for 46 hours. In theory it gets installed Tuesday, and Thursday afternoon it's removed. All I have to do is endure. For the first day, I was tired and listless, but couldn't really sleep. Only later that night would I find out how elusive sleep, and more importantly, rest, really was. I couldn't get comfortable, a side effect of the chemo was that every two hours I needed to use the bathroom. But due to my bad knees it was painful to hobble to the bathroom, using a cane. At time's I'd resort to crutches. Despite air conditioning it was hot. The entire region was under a heat alert for days, the humidity and heat cruelly confining me indoors for nearly the entire week. But the lack of sleep was more than fatiguing - I couldn't tell if I was sleeping or having waking dreams. The dreams were always agitated, disturbing and exceedingly exhausting. The only other time I've experienced this was when I was under major anaesthetic for my past surgeries. I was getting scared that I couldn't cope.
I was exhausted. And it got worse. I was restless, in pain from my knees. There was no position of comfort -on the bed, couch, chair. Desperate for any kind of comfort I tried sleeping on the floor with quilts and blankets to relieve the pressure on my knee. Nothing worked for long. I would get up through the night, trying to rest on one of the two couches, before eventually returning to bed. It wouldn't be until Labour day the following Monday before I felt I was getting actual rest. My eating was driven by random cravings -a necatarine here, maybe some cereal. Some soups were appetizing, others simply turned my stomach. For a small period I would lie in bed, craving a simple ham sandwich.
Tired, jittery, exhausted and in pain it was thus no surprise that my emotions were raw and brittle. I would find myself crying during those long nights of pain and sleeplessness, frustrated by the inability to do simple things -walk, sleep, eat. The pain in my knees exacerbated my emotional pain. My despair grew worse. And then when I thought I was bad, it managed to get even worse. My most despised chemo side effect manifested itself: constipation.
It might seem amusing, but this chemo is diabolical. First it siphons away your appetite, then causes intense pain while attempting to relieve your bowels. Because I was getting up to go the washroom every two hours, it was natural to try to find some relief. Only relief never came, just exhaustion and pain. The effects intensify even after my 5FU pump was removed Thursday. I don't remember details, just the gradual resignation that everything was hopeless. My despair grew, and my stock of hope evaporated. I seriously questioned my choice to take on this treatment. I just wanted to be done with chemo, done with cancer, done with life.
In my past chemo, the turning point was usually when the 5FU pump was removed Thursday afternoon sitting in the exam room, waiting for the nurse to remove the pump, I prayed I would soon feel better. My CCAC nurse evaluated my state and was concerned at how I was faring. For the only time I can recall, I was nearly sick again as the pump was disconnected. The profound feeling of helplessness was now pervading my every thought. That Thursday I thought I would be better in 24 hours, after all that's what I remembered. But that was five years ago, and my body simply wasn't up to the task.
Thursday night started the two worst days of my ordeal. Post chemo, post 5FU pump, I should be recovering. Instead I'm shaky, jittery. My sleep has left me exhausted, I cry at the smallest things My knee pain causes me so much discomfort that simply rolling over in bed is agony. I am depressed and despair that I'll ever feel comfortable. And through the next two days the discomfort from constipation grows. Fibre is key, water is key, patience is key. I can bring the first two into play, but I have no patience, no energy. It's a struggle to drag myself out of bed multiple times through the night to try to find relief. I'm just so tired, so damn emotional. I am bitterly angry at cancer for doing this to me. Not for the last time I seriously doubted my decision to engage in chemo.
For the first time in my life I'm saddened by the fact that I don't want to go on: With treatment. With suffering. With life. Why do I have to endure this? Where is the so-called quality of life? I am unable to think rationally anymore. I badly need rest and I am scared. I can't sleep. I just want this journey to be over. I want to give up.
Saturday, and a small glimmers of hope appear. My constipation battle is passing, so to speak, with help from stool softeners. My knee pain and sleep issues are still with me, and my appetite is returning I force myself get some exercise. I can't walk, but we have a small utilitarian exercise bike in our basement. I ride it for five minutes. Later I ride for 20 minutes. I have no stamina. My knee isn't adversely affected. Then an amazing resource comes to my assistance: one of my brothers has driven four hours to visit me this afternoon.
I rarely see my siblings, and given my current emotional state it was absolutely what I needed right then. We discussed in detail my emotional tribulations, and the core of my fears. When he left several hours later I was, if not calm, at least had a plan for the coming week. That plan would include meeting with my Oncologist to discuss my treatment and determine if it could be moderated to lessen the effects. Plus I figured out why my knees were bugging me: I had stopped taking my pain killers the day of chemo and never resumed them. Saturday night I would take one pill and was rewarded with, if not deep sleep, then a less pain-filled sleep.
I struggle to find my way back from those despair-filled depths of the previous week. By Tuesday -a week after chemo- I would feel somewhat rested but still not sleeping regularly. I ride my mountain bike, short distances, simply to be outside and get real exercise. I would relearn that I only have to enjoy my time now, when I feel good. I schedule an appointment with my Oncologist before my next treatment to discuss options and alternatives. I had drifted through my first treatment without conviction that there would be any benefit. I need a plan that it will make a difference, else I'm just wasting time.
By September 10th I've managed my day-to-day life better. It's only taken nine days, twice as long as it once did. Pain medication seems to help my sleeping. And I eat a lot of fibre. For the first time in months I worked on one of my small electronics projects. Am I getting better? Only time will tell. I have completed one chemo session, there are five more to go before an assessment will be done on how effective this treatment is. I hope I have the strength to see this through.
So my plan is simply this: continue with my treatment. Try to eat healthier. Find a way to manage my knee pain. Bike ride when I can. Prepare for the inevitable chemo side effects. Finally, learn to ask for help before I'm so overwhelmed that I feel there aren't any options left. There are always options, perhaps not ones we want to make, but ones that we can control.
Wednesday, September 9, 2015
Quilts and Kindness
Last year in 2014 I underwent surgery for a recurrence of colon cancer. In 2015 I was diagnosed with an inoperable metastasis in my lung. Yet there is another link between these two events: Quilts.
From a dear coworker in 2014 I received a beautiful, hand-made quilt from Victoria's Quilts of Canada. Comfort for the body, comfort for the soul and I was truly touched when she presented me with this gift. The quilt is beautifully hand-made, then donated to cancer patients. The organization only asks for whatever a sponsor donates. From humble beginnings, this organization now distributes around 500 quilts per months. This quilt quickly became my favourite 'comfort blanket' whenever there is a chill in the air, or if the Winter nights became too cool. I love my quilt.
So it was quite surprise for me this Spring after my most recent diagnosis when a package arrived at my house. Inside was another Victoria's Quilt. While looking at the enclosed note I found it exceedingly difficult to read, for the first thing I read was the name of the sponsor: my next door neighbor. To say I was emotionally overwhelmed would be an understatement, these days the tears freely flow for any act of kindness. I now have two lovely Victoria's Quilts, both of which will be used, and both which will always remind me that kindness can vanquish fear.
I don't know how to express my thanks for those where compassion knows no bounds. It has been my privilege over the years to be a recipient over so many of these extraordinary acts. During my ordeal I've experienced wonder at how simple acts of compassion can help ease this weary journey of mine. The path I walk is for me alone, but lining the way are the outstretched hands of those who willingly help me when I stumble.
From a dear coworker in 2014 I received a beautiful, hand-made quilt from Victoria's Quilts of Canada. Comfort for the body, comfort for the soul and I was truly touched when she presented me with this gift. The quilt is beautifully hand-made, then donated to cancer patients. The organization only asks for whatever a sponsor donates. From humble beginnings, this organization now distributes around 500 quilts per months. This quilt quickly became my favourite 'comfort blanket' whenever there is a chill in the air, or if the Winter nights became too cool. I love my quilt.
So it was quite surprise for me this Spring after my most recent diagnosis when a package arrived at my house. Inside was another Victoria's Quilt. While looking at the enclosed note I found it exceedingly difficult to read, for the first thing I read was the name of the sponsor: my next door neighbor. To say I was emotionally overwhelmed would be an understatement, these days the tears freely flow for any act of kindness. I now have two lovely Victoria's Quilts, both of which will be used, and both which will always remind me that kindness can vanquish fear.
I don't know how to express my thanks for those where compassion knows no bounds. It has been my privilege over the years to be a recipient over so many of these extraordinary acts. During my ordeal I've experienced wonder at how simple acts of compassion can help ease this weary journey of mine. The path I walk is for me alone, but lining the way are the outstretched hands of those who willingly help me when I stumble.
Wednesday, August 19, 2015
The Radiation Chronicles: Fifth treatment
Friday June 26th and another beautiful sunny summer morning heralded my fifth, and hopefully last, radiation treatment. My previous nights pain and emotion had remarkably dissipated, no doubt due to the rest achieved with the help of Tylenol-3's. I was certainly in a better frame of mind, and wanted this process to be over as quickly as possible. So once more I'm in the waiting room outside the treatment area, when my name is called. It's time for my last treatment
This time my session has a novelty -- I will be part of a teaching exercise. For the past several weeks a young student has been both observing and working with the regular staff on my particular treatment. I had first encountered this student during my CT mapping process some two weeks prior. She was also present at several of my treatments this week. Today she would be going solo, and I would be hervictim patient.
Although the staff knows me by sight, they have always adhered to the formalities: Ask the patient their date of birth. Confirm that the treatment is for a specific condition. Ask if the patient has any questions. For a brief instant my mischievous side wanted to throw out a flippant answer to see how she responds, but wisely thought better of it. She worked efficiently and methodically, dotting all the i's and crossing all the t's. She situated my leg for its final treatment and retreated to the control room with her two proctors. Ten minutes later we both had reason to smile: my treatment was complete and the earnest young student had successfully completed her training exercise.
Now it was reward time. I presented the box of chocolates I had brought with me as a token of thanks to the student, with a suggestion to share with her coworkers. Big smiles on everyone's face as I left the Radiation Therapy department, hopefully for the last time. For me it is important to let those caring for me know how much I appreciate their dedication and efforts. Little things, like a smile, a kind word of thanks, or even a box of chocolates lets people know you are grateful.
In the weeks to come my leg would feel better, and sometimes worse. There was improvement, but I suspect the damage is done. Gone are my days of being able to walk for hours without efforts. Now I walk with a limp, but my journey still continues.
This time my session has a novelty -- I will be part of a teaching exercise. For the past several weeks a young student has been both observing and working with the regular staff on my particular treatment. I had first encountered this student during my CT mapping process some two weeks prior. She was also present at several of my treatments this week. Today she would be going solo, and I would be her
Although the staff knows me by sight, they have always adhered to the formalities: Ask the patient their date of birth. Confirm that the treatment is for a specific condition. Ask if the patient has any questions. For a brief instant my mischievous side wanted to throw out a flippant answer to see how she responds, but wisely thought better of it. She worked efficiently and methodically, dotting all the i's and crossing all the t's. She situated my leg for its final treatment and retreated to the control room with her two proctors. Ten minutes later we both had reason to smile: my treatment was complete and the earnest young student had successfully completed her training exercise.
Now it was reward time. I presented the box of chocolates I had brought with me as a token of thanks to the student, with a suggestion to share with her coworkers. Big smiles on everyone's face as I left the Radiation Therapy department, hopefully for the last time. For me it is important to let those caring for me know how much I appreciate their dedication and efforts. Little things, like a smile, a kind word of thanks, or even a box of chocolates lets people know you are grateful.
In the weeks to come my leg would feel better, and sometimes worse. There was improvement, but I suspect the damage is done. Gone are my days of being able to walk for hours without efforts. Now I walk with a limp, but my journey still continues.
Saturday, August 8, 2015
The Radiation Chronicles IV: Crash
Yesterday I was in an out of my treatment in record time. Everything seemed to be going great for me. Today I'm having my fourth treatment and already my left leg is experiencing significant pain. It's a painful throbbing that just won't go away. No repositioning of the leg was comfortable for long. My sleep the previous night was constantly interrupted by my incessant moving and leg irritation. I woke up before dawn, exhausted. I hoped I would be able to remain still for my treatment.
Mercifully this treatment, like the day prior, was brief. As I walked out of the treatment room through the Cancer Clinic I recalled the words of my Radiation Oncologist and nurse just two days before: that the pain would increase as the treatment took effect. It appears they were correct.
After treatment it was normal for me to return to work. I had a miserable day because of my leg. The pain never went away, never subsided. No position standing or sitting was comfortable. Ibuprofen, which up to now had relieved my pain, simply had no effect. By 4:00PM, exhausted and with little accomplished at work, I gave up and left for home. My only goal now was to fill my prescription that the Oncologist had given me on Tuesday. I hoped it would be enough.
I rode my bike from work to home. Formerly biking was an activity that I enjoyed because it was relatively pain free. Cruelly my disease was claiming even this cherished activity from me. My ride home was short, less than ten minutes, but I was crying by the time I arrived at my house, worn out by the battle raging in my shin. Yet I still needed my prescription filled. The tears I could brush away, the pain I endured as best as I could. I would ride another ten minutes to the pharmacy and submit my prescription. While the pharmacist filled my prescription, I sat nearby, letting the tears flow, head down, wondering if my days would remain like this. My name is being called, my pharmacist has my prescription ready. As I pay my share of it, the pharmacist comments that I don't get a lot of pain meds.
I leave the pharmacy but need to make one more stop. I had forgotten to pick up something for my techs at the Cancer Clinic. A small token to show that we patients are grateful for the care and quality of treatment administered. Finally I arrive home, and my pain meds - Tylenol-3's - advised 1-2 tablets every few hours as needed. I start with one for now.
This pain is nowhere near as acute as what I felt when I had kidney stones some years back. Yet it was enough to exhaust me physically and drain all my energies. As I lay on the couch, the pill gradually took effect, dulling my perception enough that I could fall into an exhausted sleep that my body and mind so desperately needed. The meds were working.
Mercifully this treatment, like the day prior, was brief. As I walked out of the treatment room through the Cancer Clinic I recalled the words of my Radiation Oncologist and nurse just two days before: that the pain would increase as the treatment took effect. It appears they were correct.
After treatment it was normal for me to return to work. I had a miserable day because of my leg. The pain never went away, never subsided. No position standing or sitting was comfortable. Ibuprofen, which up to now had relieved my pain, simply had no effect. By 4:00PM, exhausted and with little accomplished at work, I gave up and left for home. My only goal now was to fill my prescription that the Oncologist had given me on Tuesday. I hoped it would be enough.
I rode my bike from work to home. Formerly biking was an activity that I enjoyed because it was relatively pain free. Cruelly my disease was claiming even this cherished activity from me. My ride home was short, less than ten minutes, but I was crying by the time I arrived at my house, worn out by the battle raging in my shin. Yet I still needed my prescription filled. The tears I could brush away, the pain I endured as best as I could. I would ride another ten minutes to the pharmacy and submit my prescription. While the pharmacist filled my prescription, I sat nearby, letting the tears flow, head down, wondering if my days would remain like this. My name is being called, my pharmacist has my prescription ready. As I pay my share of it, the pharmacist comments that I don't get a lot of pain meds.
I leave the pharmacy but need to make one more stop. I had forgotten to pick up something for my techs at the Cancer Clinic. A small token to show that we patients are grateful for the care and quality of treatment administered. Finally I arrive home, and my pain meds - Tylenol-3's - advised 1-2 tablets every few hours as needed. I start with one for now.
This pain is nowhere near as acute as what I felt when I had kidney stones some years back. Yet it was enough to exhaust me physically and drain all my energies. As I lay on the couch, the pill gradually took effect, dulling my perception enough that I could fall into an exhausted sleep that my body and mind so desperately needed. The meds were working.
Thursday, August 6, 2015
The Radiation Chronicles: Treatment Three-Fastest. Treatment. Ever
It's a sunny June morning, with the rich blue sky that has no hint of humidity. The day is more Spring than Summer, and should truly be enjoyed. I however am inside a cancer clinic waiting area, ready for my third round of radiation treatment. Before I can even get my Samsung media player online, a friendly tech is calling my name. Treatment is about to start.
By now I have an established routine before getting on the table: I divest my pockets of all items: keys, wallet, electronic devices and loose change. My shoes are off and my left sock is removed. Once that task is accomplished, I can lay on the table, where my feet are placed into the plastic holders. The pillows prop up my head, but my legs being slightly raised cause some aches in the back of my knees. One of the techs was with me on my first treatment on Monday and remembers me. I feel embarrassed as I never quite remember any of their names.
Positioning my leg went remarkably fast. Even the process of treatment seemed to go quick. I supposed I might have been daydreaming, as my sense of time passing simply wasn't registering. It seemed like only moments from when the techs departed the room to returning again. I felt good and perhaps because the fine weather, there was an optimism that I hadn't had for a long while. I decided I should treat myself to a little reward.
Steimar Bakery is a local institution, know for fine breads and superb pastries. My return to work would see us stop there for a treat. I felt so good I even ordered a coffee, something I had almost never had in the past year. Blueberry Danish and coffee. Sunshine and blue skies. The aroma of freshly-baked bread. The richness of this experience was not simply because I have cancer, but that I took the time to appreciate the moment for what it was -something I simply enjoyed for it's own sake.
Today I was in good spirits, my treatment is half over, and things seemed to be going great. That would change by tomorrow, as I would experience a complete 180 degree reversal of emotions.
By now I have an established routine before getting on the table: I divest my pockets of all items: keys, wallet, electronic devices and loose change. My shoes are off and my left sock is removed. Once that task is accomplished, I can lay on the table, where my feet are placed into the plastic holders. The pillows prop up my head, but my legs being slightly raised cause some aches in the back of my knees. One of the techs was with me on my first treatment on Monday and remembers me. I feel embarrassed as I never quite remember any of their names.
Positioning my leg went remarkably fast. Even the process of treatment seemed to go quick. I supposed I might have been daydreaming, as my sense of time passing simply wasn't registering. It seemed like only moments from when the techs departed the room to returning again. I felt good and perhaps because the fine weather, there was an optimism that I hadn't had for a long while. I decided I should treat myself to a little reward.
Steimar Bakery is a local institution, know for fine breads and superb pastries. My return to work would see us stop there for a treat. I felt so good I even ordered a coffee, something I had almost never had in the past year. Blueberry Danish and coffee. Sunshine and blue skies. The aroma of freshly-baked bread. The richness of this experience was not simply because I have cancer, but that I took the time to appreciate the moment for what it was -something I simply enjoyed for it's own sake.
Today I was in good spirits, my treatment is half over, and things seemed to be going great. That would change by tomorrow, as I would experience a complete 180 degree reversal of emotions.
Saturday, August 1, 2015
The Radiation Chronices: Second Treatment
All my treatments save today's ( Tuesday June 23rd), were scheduled for 8:30AM. Because I was to meet with my Radiation Oncologist, this treatment was scheduled for 1:30PM. Which was extremely fortunate, as I would have missed it if was earlier.
Monday had been an energy-expending day for me, and I crashed that night into an exhausted sleep. So tired was I that the thunderstorm that rolled through before dawn didn't wake me. It did however interrupt the power, and that caused my clock radio to reset. Which allowed me to sleep in. It wasn't until nearly 9:00AM that I awoke. Since all my appointments that week save today's were for 8:30AM, I guess I was fortunate for the later treatment time.
Having reset my alarm clock I was able to attend my next treatment in a somewhat more leisurely manner. As I was no longer a "Treatment Newby", my registration at the Radiation Registration desk was perfunctory, and I wandered down to the assigned Patient Waiting Room. I know what to expect now, so I'm pretty comfortable with the process. Today however I have different techs than last time, and it was interesting to see how they approached the set up for aligning my leg for treatment.
There was a bit more jockeying of my leg to position it 'just so', and the longer they fiddled with the setup, the more the back of knees ached. I guess I should stretch before I do this next time. Once the techs are satisfied they return to the safety of the control room behind me and the treatment commences. Once more the table raises, and the treatment machine does it's eerie slow-motion traversal around my leg. I have this fleeting vision that I've seen this on an X-files episode before. Hopefully it's not a repressed memory!
As before, the process completion is indicated by the return of the techs, and the lowering of the table back to 'ground zero'. As it seems to happen more often, my getting up from a prone position on my back involves a bit of gymnastic maneuvering and the occasional assistance from a friendly tech. My second treatment is over, and back I go to the Radiation Reception desk. Where I wait for my follow-up appointment with the oncologist.
It wasn't a very long wait, and I'm brought into the exam room. My nurse is going over her checklist and asking if I have any concerns or symptoms. So far nothing other than my sore leg which I've attributed to over-exertion from my "walking" attempts yesterday. The nurse exits, and the doctor enters, almost like a tag-team match.
Basically they're seeing if my leg, in particular the skin, is having any irritation or other reactions. I could expect a light sunburn effect in the next few days, or possibly some other irritation. But the main concern is my level of pain. Both the doctor and nurse have expressed concern that if I'm having pain to let them know immediately. Although I'm hesitant to become reliant on drugs, there's simply no value in suffering. Stoicism is overrated. So I have a prescription for Tylenol-3, and I resolve that I wouldn't fill the prescription until I needed them. If I knew what was going to happen in two more days I would have filled it immediately after leaving the Hospital!
However the doctor doesn't see any immediate issues with my leg, and won't need to follow up with me until October. Unless there's a problem, then I am to notify the Cancer Center immediately.
I'm feeling pretty confident about the treatment right now, and while it's not letting me walk in my usual way, the amount of distress seems to be getting less. Time will tell, and with only three more treatments remaining, I am told I will expect significant relief. Tomorrow I resume my 8:30AM appointment times. Hope I don't sleep in!
Monday had been an energy-expending day for me, and I crashed that night into an exhausted sleep. So tired was I that the thunderstorm that rolled through before dawn didn't wake me. It did however interrupt the power, and that caused my clock radio to reset. Which allowed me to sleep in. It wasn't until nearly 9:00AM that I awoke. Since all my appointments that week save today's were for 8:30AM, I guess I was fortunate for the later treatment time.
Having reset my alarm clock I was able to attend my next treatment in a somewhat more leisurely manner. As I was no longer a "Treatment Newby", my registration at the Radiation Registration desk was perfunctory, and I wandered down to the assigned Patient Waiting Room. I know what to expect now, so I'm pretty comfortable with the process. Today however I have different techs than last time, and it was interesting to see how they approached the set up for aligning my leg for treatment.
There was a bit more jockeying of my leg to position it 'just so', and the longer they fiddled with the setup, the more the back of knees ached. I guess I should stretch before I do this next time. Once the techs are satisfied they return to the safety of the control room behind me and the treatment commences. Once more the table raises, and the treatment machine does it's eerie slow-motion traversal around my leg. I have this fleeting vision that I've seen this on an X-files episode before. Hopefully it's not a repressed memory!
As before, the process completion is indicated by the return of the techs, and the lowering of the table back to 'ground zero'. As it seems to happen more often, my getting up from a prone position on my back involves a bit of gymnastic maneuvering and the occasional assistance from a friendly tech. My second treatment is over, and back I go to the Radiation Reception desk. Where I wait for my follow-up appointment with the oncologist.
It wasn't a very long wait, and I'm brought into the exam room. My nurse is going over her checklist and asking if I have any concerns or symptoms. So far nothing other than my sore leg which I've attributed to over-exertion from my "walking" attempts yesterday. The nurse exits, and the doctor enters, almost like a tag-team match.
Basically they're seeing if my leg, in particular the skin, is having any irritation or other reactions. I could expect a light sunburn effect in the next few days, or possibly some other irritation. But the main concern is my level of pain. Both the doctor and nurse have expressed concern that if I'm having pain to let them know immediately. Although I'm hesitant to become reliant on drugs, there's simply no value in suffering. Stoicism is overrated. So I have a prescription for Tylenol-3, and I resolve that I wouldn't fill the prescription until I needed them. If I knew what was going to happen in two more days I would have filled it immediately after leaving the Hospital!
However the doctor doesn't see any immediate issues with my leg, and won't need to follow up with me until October. Unless there's a problem, then I am to notify the Cancer Center immediately.
I'm feeling pretty confident about the treatment right now, and while it's not letting me walk in my usual way, the amount of distress seems to be getting less. Time will tell, and with only three more treatments remaining, I am told I will expect significant relief. Tomorrow I resume my 8:30AM appointment times. Hope I don't sleep in!
Thursday, July 30, 2015
The Radiation Chronicles
For one week in June my blog will be known as the 'Radiation Chronicles' to reflect the treatment I would be receiving. Treatment prescribed for the likely metastasis in my left shin. Because of the chronic pain, I couldn't sleep, I couldn't walk, and I couldn't concentrate. My personal and work life were suffering. Pain was now defining my life. Radiation offered hope to relieve that pain.
I had my initial consult with my Radiation Oncologist on Thursday June 11th. The day after I would undergo a CT simulation which would identify the extent of the radiation treatment. After finishing the approximately one hour mapping process, I was handed a green appointment card. My first treatment would start on Monday.
Sunday night and I'm not sleeping. My left leg is throbbing, the only position that brings any sort of relief is when I'm lying prone on my stomach, left leg stretched straight. I don't care that it's in my bones, I just want to sleep.
I arrive at the Cancer Centre well before my appointment time, going directly to the Radiation Registration desk just as they told me to last Friday. I present my green appointment card. The receptionist smiles and comments that I'm a "treatment newby". As I've never received radiation treatment before, the receptionist guides me to the waiting area for Radiation Therapy. I've never been in this part of the Cancer Centre. It seems empty, quieter than where I received chemo. Another patient arrives. He is older, and we exchange muted greetings. I wasn't up to conversation, but my companion was undeterred. However his one-sided conversation was marked by the anger he had towards his disease and how it changed his life. I could only wonder if I would feel similarly in the future.
My co-patient was soon called in for his treatment. Minutes later, a smiling young tech calls my name and leads me to the treatment room. A second tech joins us, and as this was my first treatment they took great care in making me feel comfortable. Patiently they explained that the procedure would be painless and wouldn't take long. My only job would be to simply lie still during the course of treatment. I could do that I thought. First first step was removing my shoes and the sock on my left foot. I had the forethought to wear shorts, so I didn't have remove my pants. No one needs to see that. Next I had to lie down on the table, and my feet were placed into plastic rests that slightly raised my heels off of the table. I was given a pillow for my head, and somewhat tentatively I asked for a second. I like my head propped up a bit, and the techs obliged my simple request. I was surprised by their next request: would I be more comfortable if they strapped me onto the table? It turns out that part of the process involves the table lifting to a height of approximately five feet!
The finicky part of the process was the alignment of my leg. The dots tattooed on my leg last Friday were used for this part. Satisfied that the stars, or at least my leg, was in alignment, the techs left the room to begin the process. Now the table I'm on is raised. I watch as the Varian radiation therapy machine slowly rotates around my leg. This machine is a large and imposing device, moving with a precision I find reassuring. I understand now why the table is raised: so the machine can deliver it's treatment from any angle. During my treatment there will be X-rays to ensure that the alignment is correct before the radiation is actually delivered. My only feeling during this time is the ache in my knees as I try to keep perfectly still. Perhaps because this is my first experience, the time seemed to pass slowly. Random thoughts: what if I have to sneeze, would they stop the procedure? I would later find out that if I was to sneeze then do so, just don't move, especially your arms. Fortunately during my treatment I never had to put that action to the test.
I realized the treatment was completed when the technicians return. My table was slowly lowered, and I have to be patient not to try to sit up too quickly. I had come through my first treatment without incident. With four more treatments remaining, I wondered how long it would be before I felt any improvement.
The rest of the day, perhaps feeling a confidence that I didn't really have, I walked, or rather, limped, a lot. The efforts I put forth attempting to walk "normally" would prove too much. That night exhaustion caught up with me, despite the pain in my shin. Tomorrow I would receive my second treatment, and interestingly, meet with the Radiation Oncologist for a follow up.
I had my initial consult with my Radiation Oncologist on Thursday June 11th. The day after I would undergo a CT simulation which would identify the extent of the radiation treatment. After finishing the approximately one hour mapping process, I was handed a green appointment card. My first treatment would start on Monday.
Sunday night and I'm not sleeping. My left leg is throbbing, the only position that brings any sort of relief is when I'm lying prone on my stomach, left leg stretched straight. I don't care that it's in my bones, I just want to sleep.
I arrive at the Cancer Centre well before my appointment time, going directly to the Radiation Registration desk just as they told me to last Friday. I present my green appointment card. The receptionist smiles and comments that I'm a "treatment newby". As I've never received radiation treatment before, the receptionist guides me to the waiting area for Radiation Therapy. I've never been in this part of the Cancer Centre. It seems empty, quieter than where I received chemo. Another patient arrives. He is older, and we exchange muted greetings. I wasn't up to conversation, but my companion was undeterred. However his one-sided conversation was marked by the anger he had towards his disease and how it changed his life. I could only wonder if I would feel similarly in the future.
My co-patient was soon called in for his treatment. Minutes later, a smiling young tech calls my name and leads me to the treatment room. A second tech joins us, and as this was my first treatment they took great care in making me feel comfortable. Patiently they explained that the procedure would be painless and wouldn't take long. My only job would be to simply lie still during the course of treatment. I could do that I thought. First first step was removing my shoes and the sock on my left foot. I had the forethought to wear shorts, so I didn't have remove my pants. No one needs to see that. Next I had to lie down on the table, and my feet were placed into plastic rests that slightly raised my heels off of the table. I was given a pillow for my head, and somewhat tentatively I asked for a second. I like my head propped up a bit, and the techs obliged my simple request. I was surprised by their next request: would I be more comfortable if they strapped me onto the table? It turns out that part of the process involves the table lifting to a height of approximately five feet!
The finicky part of the process was the alignment of my leg. The dots tattooed on my leg last Friday were used for this part. Satisfied that the stars, or at least my leg, was in alignment, the techs left the room to begin the process. Now the table I'm on is raised. I watch as the Varian radiation therapy machine slowly rotates around my leg. This machine is a large and imposing device, moving with a precision I find reassuring. I understand now why the table is raised: so the machine can deliver it's treatment from any angle. During my treatment there will be X-rays to ensure that the alignment is correct before the radiation is actually delivered. My only feeling during this time is the ache in my knees as I try to keep perfectly still. Perhaps because this is my first experience, the time seemed to pass slowly. Random thoughts: what if I have to sneeze, would they stop the procedure? I would later find out that if I was to sneeze then do so, just don't move, especially your arms. Fortunately during my treatment I never had to put that action to the test.
I realized the treatment was completed when the technicians return. My table was slowly lowered, and I have to be patient not to try to sit up too quickly. I had come through my first treatment without incident. With four more treatments remaining, I wondered how long it would be before I felt any improvement.
The rest of the day, perhaps feeling a confidence that I didn't really have, I walked, or rather, limped, a lot. The efforts I put forth attempting to walk "normally" would prove too much. That night exhaustion caught up with me, despite the pain in my shin. Tomorrow I would receive my second treatment, and interestingly, meet with the Radiation Oncologist for a follow up.
Monday, July 6, 2015
Lung Biopsy
On June 18th, 2015 I had my first, and likely my last, lung biopsy. The reason for this procedure was to obtain samples of the mass in my lungs and lymph nodes. By having these samples analyzed, it can be determined exactly what type of cancer I have. This means a day surgery procedure, and, more importantly, the joy of experiencing another tube inserted into another orifice.
As a veteran of several day surgery procedures, I know the process well: show up early at the Hospital and register at the Admitting department. Take your paperwork up the Day Surgery floor, and wait for your name to be called . So that's what I did on June 18th, arriving about 40 minutes early for my 1PM appointment. I waited patiently until I was seen by the clerk, discovering only then that I was pre-registered. My paperwork was already waiting at the Day Surgery site on the fourth floor.
Upon arriving on the Day Surgery floor, I confirmed my appointment and was asked to take a seat, being informed that I would be seen shortly. Good thing I had done all that 'practice waiting' earlier today. Soon enough a nurse arrives to bring in me into the preparation room. It's cold and I'm expecting the usual process of having to disrobe entirely and change into a hospital gown. While I would eventually wear the "Johnny Shirt", I would be able to keep everything on but my shoes and shirt. I was thankful for this, as it was cold in the room. My problematic left leg hurt as I'm not comfortable laying on my back. The nurse is looking at my hand, seeking a suitable vein for the IV. I have good hands for that apparently, yet the first shot misses. Second attempt is higher in my arm, near the crook of my elbow. I prefer that anyways. This attempt succeeds. I will wear the usual souvenir bandages and tape when I leave. More waiting, then my nurse is replaced by the anesthesiologist.
The nice anesthesiologist patiently explains the process of what they need to do to me. This consists of numbing my tongue, throat, mouth and voice box. I will receive a 'twilight sedation' via the IV, and will likely be conscious during the procedure. What she didn't tell me is that the administration of the anesthesia is accomplished by dabbing the above-mentioned parts with an anesthesia-soaked swab on the end of a stick. The first part began easily enough, with an Ativan pill placed under my tongue. Once that was dissolved, the anesthesia application began in earnest.
My job is to open my mouth and stick out my tongue. Repeatedly. Initial applications are easy, the mouth and tongue are swabbed, and you are encouraged to swallow, as this will help numb your throat. Things get a bit more challenging the further down your throat, and that's where the gag reflex kicks in. You never actually choke, it's a natural reflex that most of us can't (or won't) override. I was able to test my gag reflex several times during this process. Each time I'd gag, my anesthetist told me what a great job I was doing, and waited for me to regain my composure. I would take another breath, open my mouth and stick out my tongue. We repeated this activity numerous times, and yes, it did get easier, mostly because she stopped doing it.
I don't recall if I felt particular numb, but the doctor and staff were satisfied I was ready. By now I've got numerous EKG monitoring wires stuck on my chest; those will be fun to remove. I was repeatedly asked if I was on blood thinners or aspirin. I was also asked if I had any allergies. Next I was given a bite guard, so I wouldn't chomp down on the scope tube that would be threaded down my throat. Finally my eyes were covered up, and the procedure began.
A sensation of something moving down my throat was my only indication that the tube was being inserted. This feeling only lasted for a few moments however. I wouldn't remember when it was removed, yet I believed I was conscious during most of the procedure. I would hear conversations, the occasional "he needs more...". I can't talk, but I can make hand gestures: thumbs up or down if needed. There wasn't anything requiring my input, and I tried to drift off. Rather, I hoped I'd drift off, I hadn't been sleeping well for a very long time, and was hoping I'd be right out. No such luck. My time sense of course wasn't very accurate, I can't tell how long the procedure lasted. It didn't seem very long. More importantly, I didn't feel a thing.
I'm aware that the procedure is done, and things have gone well. My bed and I are moved back to a recovery room. I feel fine. I'll be observed for about an hour, and then my gag reflex will be tested. They way they do this is have you sip some water. If you can drink without gagging, it's a good thing. Those initial sips were quickly followed by substantially more water; I hadn't had anything to eat or drink in over 12 hours now, and I was thirsty!
Upon discharge I was reminded that there might be some coughed-up blood and a raw feeling in my throat. Fortunately none of these symptoms presented, and over the next few hours I was able to eat and drink without concern. Now all I had to do was wait another 11 days for the results. Of course as I was getting dressed I discovered the leftover EKG sensors stuck on me like leeches. Pulling each sensor off also yanked a fair bit of body hair with it. The most painful process of this whole thing always seems to come down to tape and hair.
My biopsy results would be read to me on the 29th, eleven days from my procedure date. I didn't feel worried about the biopsy results, I know I have cancer. I just wanted to be comfortable. When I saw the Lung doc, it was rather anticlimactic. Our conversation lasted about five minutes, where he confirmed I had cancer and that it was derived from the instance in my colon. Upon leaving his office, the doctor told me he was glad to have met me, and for some reason, that made me feel sad. At home that night I dutifully informed my friends and family about the results. It seems that everyone wants to believe that there's a microscopic chance that the biopsy would show something else. I feel like I'm letting them all down when there's no good news.
It's getting difficult to keep emotions in check, to keep motivated, to want to live my life in my usual fashion. I know that this feeling will eventually fade and I'll adopt a new perspective. It's slowly dawning on me that I don't have to maintain an air of strength for myself or others. I just have to be strong enough to do what I want, when I want. Finding ways to be comfortable and happy are hard enough when you're healthy, so when you're sick, you should simply enjoy those peaceful and happy times as you can.
As a veteran of several day surgery procedures, I know the process well: show up early at the Hospital and register at the Admitting department. Take your paperwork up the Day Surgery floor, and wait for your name to be called . So that's what I did on June 18th, arriving about 40 minutes early for my 1PM appointment. I waited patiently until I was seen by the clerk, discovering only then that I was pre-registered. My paperwork was already waiting at the Day Surgery site on the fourth floor.
Upon arriving on the Day Surgery floor, I confirmed my appointment and was asked to take a seat, being informed that I would be seen shortly. Good thing I had done all that 'practice waiting' earlier today. Soon enough a nurse arrives to bring in me into the preparation room. It's cold and I'm expecting the usual process of having to disrobe entirely and change into a hospital gown. While I would eventually wear the "Johnny Shirt", I would be able to keep everything on but my shoes and shirt. I was thankful for this, as it was cold in the room. My problematic left leg hurt as I'm not comfortable laying on my back. The nurse is looking at my hand, seeking a suitable vein for the IV. I have good hands for that apparently, yet the first shot misses. Second attempt is higher in my arm, near the crook of my elbow. I prefer that anyways. This attempt succeeds. I will wear the usual souvenir bandages and tape when I leave. More waiting, then my nurse is replaced by the anesthesiologist.
The nice anesthesiologist patiently explains the process of what they need to do to me. This consists of numbing my tongue, throat, mouth and voice box. I will receive a 'twilight sedation' via the IV, and will likely be conscious during the procedure. What she didn't tell me is that the administration of the anesthesia is accomplished by dabbing the above-mentioned parts with an anesthesia-soaked swab on the end of a stick. The first part began easily enough, with an Ativan pill placed under my tongue. Once that was dissolved, the anesthesia application began in earnest.
My job is to open my mouth and stick out my tongue. Repeatedly. Initial applications are easy, the mouth and tongue are swabbed, and you are encouraged to swallow, as this will help numb your throat. Things get a bit more challenging the further down your throat, and that's where the gag reflex kicks in. You never actually choke, it's a natural reflex that most of us can't (or won't) override. I was able to test my gag reflex several times during this process. Each time I'd gag, my anesthetist told me what a great job I was doing, and waited for me to regain my composure. I would take another breath, open my mouth and stick out my tongue. We repeated this activity numerous times, and yes, it did get easier, mostly because she stopped doing it.
I don't recall if I felt particular numb, but the doctor and staff were satisfied I was ready. By now I've got numerous EKG monitoring wires stuck on my chest; those will be fun to remove. I was repeatedly asked if I was on blood thinners or aspirin. I was also asked if I had any allergies. Next I was given a bite guard, so I wouldn't chomp down on the scope tube that would be threaded down my throat. Finally my eyes were covered up, and the procedure began.
A sensation of something moving down my throat was my only indication that the tube was being inserted. This feeling only lasted for a few moments however. I wouldn't remember when it was removed, yet I believed I was conscious during most of the procedure. I would hear conversations, the occasional "he needs more...". I can't talk, but I can make hand gestures: thumbs up or down if needed. There wasn't anything requiring my input, and I tried to drift off. Rather, I hoped I'd drift off, I hadn't been sleeping well for a very long time, and was hoping I'd be right out. No such luck. My time sense of course wasn't very accurate, I can't tell how long the procedure lasted. It didn't seem very long. More importantly, I didn't feel a thing.
I'm aware that the procedure is done, and things have gone well. My bed and I are moved back to a recovery room. I feel fine. I'll be observed for about an hour, and then my gag reflex will be tested. They way they do this is have you sip some water. If you can drink without gagging, it's a good thing. Those initial sips were quickly followed by substantially more water; I hadn't had anything to eat or drink in over 12 hours now, and I was thirsty!
Upon discharge I was reminded that there might be some coughed-up blood and a raw feeling in my throat. Fortunately none of these symptoms presented, and over the next few hours I was able to eat and drink without concern. Now all I had to do was wait another 11 days for the results. Of course as I was getting dressed I discovered the leftover EKG sensors stuck on me like leeches. Pulling each sensor off also yanked a fair bit of body hair with it. The most painful process of this whole thing always seems to come down to tape and hair.
My biopsy results would be read to me on the 29th, eleven days from my procedure date. I didn't feel worried about the biopsy results, I know I have cancer. I just wanted to be comfortable. When I saw the Lung doc, it was rather anticlimactic. Our conversation lasted about five minutes, where he confirmed I had cancer and that it was derived from the instance in my colon. Upon leaving his office, the doctor told me he was glad to have met me, and for some reason, that made me feel sad. At home that night I dutifully informed my friends and family about the results. It seems that everyone wants to believe that there's a microscopic chance that the biopsy would show something else. I feel like I'm letting them all down when there's no good news.
It's getting difficult to keep emotions in check, to keep motivated, to want to live my life in my usual fashion. I know that this feeling will eventually fade and I'll adopt a new perspective. It's slowly dawning on me that I don't have to maintain an air of strength for myself or others. I just have to be strong enough to do what I want, when I want. Finding ways to be comfortable and happy are hard enough when you're healthy, so when you're sick, you should simply enjoy those peaceful and happy times as you can.
Friday, June 12, 2015
A whole week between CT scans
My damn left shin is a pain. Specifically it's a pain if I walk, or sit, or sleep. It seems I can't get any long-term relief. It's not an agonizing pain but it's annoying and for a while I thought it might be getting better. Wishful thinking perhaps, but I found I simply wasn't comfortable, unable to sleep soundly, or walk, or worst of all, just not knowing what it was.
Over a month ago I had a Bone Scan, which showed suspicious activity and signaled alarms that Paget's Disease or Metastasis was the cause. I was scared, and made an immediate follow-up appointment with the family doctor who had ordered the tests. While the Bone Scan screamed cancer, the X-ray said no evidence. I felt relieved and even happy for a while. Perhaps I had damaged my bone with some sort of physical trauma. But the pain wouldn't subside for any period of time. It wasn't horribly bad, it was just there. Annoying and unpredictable. However my work and life quality were suffering. I couldn't think or concentrate for prolonged periods. I brought this up with my Oncologist, who upon examining my shin said it was probably a metastasis, eating away at the bone. Great, now I'm a cancer chew-toy.
To confirm this I would have another CT scan. Within two days of my visit to the Oncologist, I was scheduled for a late-evening CT of my left leg. No preparation needed to be imbibed, no IV for contrast injections, just slide me into the CT and dose me with a whack of radiation. While my oncologist indicated that colon cancer patients presenting with bone metastasis were rare, it was not unheard of. Even so, as a precaution I would have a consult with a Radiation Oncologist. The consult would take place exactly one week after my recent CT of my left leg.
Thursday morning, June 11th and I'm at the Windsor Regional Cancer Centre. However since this is to visit a Radiation Oncologist, I'm meeting in a different venue than where I've gone for the past five years. While it's a new office with new people, some things don't change: like the boring, repetitious recitation of my medical history, my list of prescription meds and other minor trivia (like, what's bothering me now...) (Remind me to invent the app that lets patients and physicians update their medical databases per every visit. ) Administrative work completed, now I would meet the Doctor, and finally have the shin pain mystery solved.
I knew it was cancer. I've known since before the Bone Scan. Call it denial, but I like to think that I was now ready to hear the news. I didn't get upset, or insist on bone biopsies (ugh) or any further tests. I wanted to move forward to the next phase: Radiation Therapy. It was again stressed that this is strictly palliative. Some folks equate 'palliative' with 'imminent death'. I believe that it's going to help me feel better, and frankly that's all I want. My outlook on life is now looking towards the immediate future: This week. Tomorrow. Today. While the treatment itself is quite easy and quick, there were some preliminaries, and it would begin the very next day, with another CT scan.
This CT scan is a simulation, designed to set up the guide posts for the real treatment process. The way they do this is with precision scanning of the affected area and using alignment dots tattooed on your skin. In other words, I just got some rad, wicked, ink. Dude.
My treatments are expected to start within two weeks, so hopefully by the end of June. The treatment itself apparently takes only ten minutes, and is repeated for five days. So they'll start on a Monday and by Friday I'll be done. I'm told there will be some initial discomfort -basically I'm getting a daily dose of sunburn. For relief, apparently Hydrocortisone cream will be prescribed.. It can't be any worse than what I'm going through now. (Actually there's a suspicious spot on my right knee that will need further investigation.)
So I've had a seven-day stretch between CT scans and now all I can do is wait for my treatment. I'm sure it'll be a blast!
Over a month ago I had a Bone Scan, which showed suspicious activity and signaled alarms that Paget's Disease or Metastasis was the cause. I was scared, and made an immediate follow-up appointment with the family doctor who had ordered the tests. While the Bone Scan screamed cancer, the X-ray said no evidence. I felt relieved and even happy for a while. Perhaps I had damaged my bone with some sort of physical trauma. But the pain wouldn't subside for any period of time. It wasn't horribly bad, it was just there. Annoying and unpredictable. However my work and life quality were suffering. I couldn't think or concentrate for prolonged periods. I brought this up with my Oncologist, who upon examining my shin said it was probably a metastasis, eating away at the bone. Great, now I'm a cancer chew-toy.
To confirm this I would have another CT scan. Within two days of my visit to the Oncologist, I was scheduled for a late-evening CT of my left leg. No preparation needed to be imbibed, no IV for contrast injections, just slide me into the CT and dose me with a whack of radiation. While my oncologist indicated that colon cancer patients presenting with bone metastasis were rare, it was not unheard of. Even so, as a precaution I would have a consult with a Radiation Oncologist. The consult would take place exactly one week after my recent CT of my left leg.
Thursday morning, June 11th and I'm at the Windsor Regional Cancer Centre. However since this is to visit a Radiation Oncologist, I'm meeting in a different venue than where I've gone for the past five years. While it's a new office with new people, some things don't change: like the boring, repetitious recitation of my medical history, my list of prescription meds and other minor trivia (like, what's bothering me now...) (Remind me to invent the app that lets patients and physicians update their medical databases per every visit. ) Administrative work completed, now I would meet the Doctor, and finally have the shin pain mystery solved.
I knew it was cancer. I've known since before the Bone Scan. Call it denial, but I like to think that I was now ready to hear the news. I didn't get upset, or insist on bone biopsies (ugh) or any further tests. I wanted to move forward to the next phase: Radiation Therapy. It was again stressed that this is strictly palliative. Some folks equate 'palliative' with 'imminent death'. I believe that it's going to help me feel better, and frankly that's all I want. My outlook on life is now looking towards the immediate future: This week. Tomorrow. Today. While the treatment itself is quite easy and quick, there were some preliminaries, and it would begin the very next day, with another CT scan.
This CT scan is a simulation, designed to set up the guide posts for the real treatment process. The way they do this is with precision scanning of the affected area and using alignment dots tattooed on your skin. In other words, I just got some rad, wicked, ink. Dude.
My treatments are expected to start within two weeks, so hopefully by the end of June. The treatment itself apparently takes only ten minutes, and is repeated for five days. So they'll start on a Monday and by Friday I'll be done. I'm told there will be some initial discomfort -basically I'm getting a daily dose of sunburn. For relief, apparently Hydrocortisone cream will be prescribed.. It can't be any worse than what I'm going through now. (Actually there's a suspicious spot on my right knee that will need further investigation.)
So I've had a seven-day stretch between CT scans and now all I can do is wait for my treatment. I'm sure it'll be a blast!
Thursday, June 11, 2015
Hard Questions, Tougher Answers
April is the month of Daffodils, the yellow flower that symbolizes the fight against cancer. For me however, April is forever linked with either being informed I have cancer, or receiving treatment for it. April is not my favourite month. My latest news that I had cancer in my lung was, to put it mildly, a complete shock. No matter how often I'd consider the possibility of recurrence, I never imagined I wouldn't be able to escape one more time. For a time I would dwell in sorrow and despair, and that, for me, is the worst aspect of enduring this disease.
I made another appointment with my Oncologist, I had to ask the tough questions and fully comprehend the answers. The first question: How long do I have? The question everyone wants to know but dreads the answer. "A couple of years" is what I might have. There is no absolute measure. I take that as a guide, knowing that the time is dependent on how well chemo holds the cancer at bay, and hope that there will be no further metastasis. It is a grim number, but one I'll work with.
There is one other question I ask because it is asked of me: Why don't I start chemo now? A good question, because it seems logical you would want treatment before the cancer grows further. As it was explained to me, and I accept it as such: chemo won't make me feel any better right now. Right now I'm breathing fine, I'm active, I'm capable doing normal everyday activities. I can ride my bike just fine. I have energy. Whacking me with chemo will reduce my vitality without any apparent gain - no symptoms presenting, so no way to see if I'm getting better. Plus there's a catch: what kind of cancer do I have anyways?
My original diagnosis years ago was Colon cancer. The progress of Colon cancer is through the liver and lungs. Chemo treatments are targeted to specific cancers: if it's a metastasis of the colon but presenting in the lungs, you use a chemo for colon cancer. If it's a new primary, I'll need a different chemo. To determine what kind I have however, I'll need a lung biopsy.
For the lung biopsy I would meet another new doctor. My lung specialist had me do a breathing test first, I suppose to establish a baseline. This test consists of being put inside a small plexiglass box and breathing though a tube approximately the size of a car tailpipe. A clip is placed on your nose so you don't accidentally inhale through that orifice as well. The test doesn't take long, but it is repetitive. I huffed and I puffed, doing my best Big Bad Wolf impression, and within twenty minutes or so I was done. My next appointment would be with the lung doctor himself, to review my test results.
Fortunately I didn't have long to wait -the very next day in fact. I met with my doctor and he seemed to think I was breathing satisfactorily, no wheezing, coughing up blood or other issues of respiratory distress. Then he showed my my CT scan. Despite having had numerous scans myself, I've never actually seen the resultant images. Today I would see the 3D tour of my lungs. My right lung looked, well, lung-like. My Left sort of seemed to be two smaller lungs jammed together, a narrowing that looked like someone was trying to make a balloon animal. That's where the cancer lived: in the upper quadrant of my left lung. Apparently there were various lymph nodes, around my chest that might be suspect too. But the one item that was terrorizing my life was apparently encroaching one of the airways to my lung. That was discouraging. Now we needed to find out what kind of cancer I have. For that a Bronchoscopy and a biopsy will be needed.
So Thursday June 18th, I'll be at the local hospital for another day procedure, with another tube being pushed into another orifice. Who wouldn't want to look forward to that?!
Saturday, May 9, 2015
Shadows revealed
Wed May 6th, 2015, and I'm sitting in the exam room at the Cancer Centre, waiting for my oncologist once again. It's a routine experience, but there's been an underlying disquiet during my recent visits that something was not right. My most recent CT scan was three weeks prior, and I had blood work earlier this morning. My doctor has arrived, and after the preliminaries, the news I didn't think I would hear for some time has rendered me shocked and helpless once more.
Shadows in my lung are indeed cancer. Cancer that has grown since January to the point where it is not considered viable for surgery. The emphasis, gently expressed by my oncologist, is that chemo is not a cure. I am stunned, unable to think coherently. For all my years as partner in this deadly dance with cancer, I have never stumbled. Now the balance has shifted, and I am being inexorably pulled into the vortex where my only options are to hang on for the ride, as I don't think I'll escape.
As it happened to me over five years ago, I'm only dimly hearing my doctor telling me about my treatment options. I can feel the sadness well up, my throat cracking as I ask questions I forget, then hearing answers I can't remember. I have another appointment card being handed to me, the session is over. On autopilot alone I keep my composure. We leave the cancer center, but stop at a nearby park. Tears are the only way I know how to express myself. When I return to work, the conversation with my manager an echo of the one five years prior.
The toughest conversation is at home later that night, when I call my sister. It breaks my heart to hear her voice, full of shock and anger at what I will be going through yet again. I have no answer for her why this keeps happening to me. That night, exhausted, I'm in bed by 10:30pm, but sleep is filled with tears and despair. I awake at 5:00am, for I still have another test: a Bone Scan for my shin.
I've done two bone scans already in my life, and they've shown that I'm shot through with arthritis. This one is to find out why my shin is in so much pain. The doctors and physiotherapist agree it's not a shin split. The chronic pain of the past few months has abated however, and I'm walking much better. I wonder if I've been walking on a fractured bone all this time.
The technician reviews my medical history, and I matter-of-factly mention the latest findings of cancer in my lungs. It seems so surreal now, lying on this platform, hands and feet strapped in so you don't move during the procedure. The scan is in multiple parts, and I receive a mild radioactive injection. For the bulk of the test I am required to lie on my back, motionless, for the better part of an hour. Curiously I feel relaxed, and if I didn't fall into a deep sleep, I felt..better.
After the scan I'm taken for more X-rays of my shin. By noon I'm done and the rest of the day is mine, as I have no desire to return to work. Still dealing with the aftermath of yesterday, I resolve to contact the cancer clinic to meet with the oncologist again: I need hard answers, and this time I'm ready to hear them.
Shadows in my lung are indeed cancer. Cancer that has grown since January to the point where it is not considered viable for surgery. The emphasis, gently expressed by my oncologist, is that chemo is not a cure. I am stunned, unable to think coherently. For all my years as partner in this deadly dance with cancer, I have never stumbled. Now the balance has shifted, and I am being inexorably pulled into the vortex where my only options are to hang on for the ride, as I don't think I'll escape.
As it happened to me over five years ago, I'm only dimly hearing my doctor telling me about my treatment options. I can feel the sadness well up, my throat cracking as I ask questions I forget, then hearing answers I can't remember. I have another appointment card being handed to me, the session is over. On autopilot alone I keep my composure. We leave the cancer center, but stop at a nearby park. Tears are the only way I know how to express myself. When I return to work, the conversation with my manager an echo of the one five years prior.
The toughest conversation is at home later that night, when I call my sister. It breaks my heart to hear her voice, full of shock and anger at what I will be going through yet again. I have no answer for her why this keeps happening to me. That night, exhausted, I'm in bed by 10:30pm, but sleep is filled with tears and despair. I awake at 5:00am, for I still have another test: a Bone Scan for my shin.
I've done two bone scans already in my life, and they've shown that I'm shot through with arthritis. This one is to find out why my shin is in so much pain. The doctors and physiotherapist agree it's not a shin split. The chronic pain of the past few months has abated however, and I'm walking much better. I wonder if I've been walking on a fractured bone all this time.
The technician reviews my medical history, and I matter-of-factly mention the latest findings of cancer in my lungs. It seems so surreal now, lying on this platform, hands and feet strapped in so you don't move during the procedure. The scan is in multiple parts, and I receive a mild radioactive injection. For the bulk of the test I am required to lie on my back, motionless, for the better part of an hour. Curiously I feel relaxed, and if I didn't fall into a deep sleep, I felt..better.
After the scan I'm taken for more X-rays of my shin. By noon I'm done and the rest of the day is mine, as I have no desire to return to work. Still dealing with the aftermath of yesterday, I resolve to contact the cancer clinic to meet with the oncologist again: I need hard answers, and this time I'm ready to hear them.
Sunday, May 3, 2015
Another day, another Colonoscopy
I've had the distinct pleasure of undergoing the Colonoscopy process four times in my life. Three of those times showed Cancer. It's been a year since my last surgery, time for a follow-up colonoscopy. Of course that can only mean one thing: The Prep.
Four previous colonscopies and two surgeries have removed any mystery or fears around the preparation process. The process itself is simple, as I follow the reduced-intake diet. This means soft foods three days before the procedure, full fluids two days before, and on the prep day itself, only clear liquids. As a result, I know I will be cold and tired and yes, at times, hungry. But these feelings only last for a little while. I'm weary of continually doing this process, but will keep doing it again as often as needed. Because it's absolutely necessary.
My procedure is scheduled for a Tuesday morning at 9:30AM. This is good, as I much prefer early morning than later afternoon. Early morning procedures mean the prep is essentially one day. My process however begins three days before, on the Saturday: Soft Food Day. On SFD I have scrambled eggs for breakfast (and sneak in a pancake). Supper is more scrambled eggs, and instant mashed potatoes. Cutting out fibre seems counter-intuitive, but the process works. Saturday was fine, save for the ongoing shin pain in my left leg. I can't have any aspirin or anything that would affect the prep or might be a bleeding risk, so I endure the throbbing. The most uncomfortable feeling during this latest procedure would be the shin pain; it made sleep difficult and walking painful. In a few weeks I would be limping whenever I walked, but for now, I just endured it and proceeded with the task at hand: not eating.
Sunday I'm on full fluids. This is actually the worst day in terms of hunger and eating, as there is a sharp decrease in my calorie intake, mostly because I'm eating plain vanilla Greek yogurt, milk, and cream soups (without crackers!). I don't particularly like creams soups for a couple of reasons. One, they're creamy, and just don't have the flavour and texture I enjoy. The other is that they are not pure cream soups: they have bits and pieces floating in them which must be removed. Suffice to say that I don't eat a lot of cream soups. I drink a lot of water, some ginger ale and green tea. I ignore any feelings of hunger, which do go away fairly quickly. I spend my evening watching a lot of TV and puttering around the house. Before I go to bed, I make Jello -green and yellow only, no red allowed!
I book Monday off of work, as this is prep day. It allows me to sleep in, and only do what I will need to do. So of course I can't sleep in. Instead, I decide to do yard work. I haven't done anything all Spring (not that we had much of a Spring so far), so naturally I spend the entire morning raking leaves and picking up sticks. In a little over an hour I'm exhausted. Moving inside the house I figure that a good sunny day requires a good sunny day activity: cleaning windows. That goes well but I'm feeling pretty weak and tired after this much manual labour. Physical work without nutrition is probably one of my sillier endeavors. However as I don't actually begin the prep until 3:00PM, I can't just sit around doing nothing or watch TV. Not yet at any rate.. I'm not hungry, at least for the choices offered: Broth, tea or coffee, and of course, Jello. Now I liked Jello as a kid. As an adult I'd make it on hot summer days and throw in a glob (or two, or three... ) of Ice Cream. After multiple go-rounds with the preparation process and hospital stays, I can honestly say that Jello is now firmly associated with some of the most unpleasant experiences in my life. Suffice to say, I only eat Jello when I'm undergoing the Prep. And this morning, I really don't feel like eating Jello for breakfast.
I drink a lot of water and green tea. I suck on hard candies (only green or yellow) for flavour. I tell myself that fasting is good for the soul (and waistline). The hard candies I am trying this time don't mix well with the green tea, and I find my palette has produced that annoying dry-mouth feeling that no amount of brushing seems to cleanse. A Halls cough-drop however has enough punch to remove the dry, slightly metallic after taste. But mostly my shin bothered me and I was uncomfortable sitting. Or standing. Or lying down to nap. My less-that-smart-choice this morning of doing yard work had aggravated my shin. I couldn't nap, and time passed slowly. Finally 3:00PM arrived, and I could finally start the preparation proper.
This preparation is called Purg Odan and it comes as three small packets that, when mixed with water, form the basis of the process. Every four hours I need to mix and drink one of these packets. They don't taste great, but they're not the worst thing I've ever consumed. During the process I drink lots of water. And ginger ale. And tea or coffee (I tried coffee again -instant though, and couldn't stand it. My taste buds are shot it seems) Also strongly recommended is to drink Gatorade to maintain electrolytes. The purge processes suck the liquid out of you and wash away electrolytes as well. The Gatorade I have is lemony-yellow. I would sip from it but found it difficult to drink. I found I had little desire to consume things other than water or the occasional green tea this time. I was tired and little energy to focus on highly technical activities, like changing the channel on the TV. And I still was bothered by my shin splints.
Within a few hours of taking the first packet ("sachet" is what the official packaging labels each packet) I was on my way to purge nirvana. At 7:00PM and 11:00PM I repeated the process. Having used other means to accomplish this task, I can say that the Purg Odan was no worse. In some ways it was better as I didn't feel so bloated after drinking 4 liters of the other stuff. But the end results were the same: drink some stuff, go the bathroom. Repeat.
Throughout the night the frequency and duration of the trips to the bathroom decreased. Yet it wasn't until 3:30AM when my bowels called a truce. I could finally sleep uninterrupted for a few hours.
Tuesday morning and I awoke early, and thirsty. I wouldn't be able to drink anything two hours before the exam. Which in my case meant by 7:30AM I was finished with consuming any fluids. A good thing, as any liquid taken in wants to go out by any available means it seems. At this point I'm essentially as cleaned out as I can be, and my weight is about 186lbs. I've lost about 7 pounds since the weekend. I'm tired and I'm cold, and I just want it be over. The time finally comes when I need to go to the clinic to have the last step performed.
My doctor's clinic has a remarkably large, very well lit, clean and modern looking waiting room. En suite bathrooms are there for those last minute emergencies. I arrived as instructed, 1/2 hour before my appointment time of 9:30. The registration is perfunctory, and my waiting time is minimal. I'm soon asked to go into the exam room. I'm on autopilot now, the familiar process plays out as it has so many times before: change into the standard johnny shirt, but you get to keep your socks on. "ProTip" -I wore my thickest warmest socks, as the single sheet you are given to cover you won't be warm enough. Everything is proceeding as it should, but my nurse informs me that there's a delay. However I'm still prepped with the IV, the only painful part of this whole process is the IV needle into my hand. My vitals are recorded, and once that's done I can rest. I'm somewhat tired but can't sleep. I'm surprisingly not thirsty or hungry. My shin pain is bothering me more than anything else. Time drags by and I realize I left my Samsung Galaxy player in the bag with all my clothes, so I can't even read or play a bad game of chess. Ten Thirty, I've been in this room for over an hour. Ten Fourty and it's now my turn. My bed and I are brought into the surgical suite. More waiting, then the anasthesiologist arrives. Some questions are asked: No I'm not a smoker - No allergies that I'm aware of save seasonal. I'm wired up to the various machines that record my vitals, then I'm left alone for a bit. During this time I play a game where I try to slow my breathing down to trigger the alarms on the machine that monitors my respiratory rates. I'm rewarded by little beeps as I get below 74, but only momentarily. It gives me something to do. At last my doctor arrives, now the real fun begins.
At this point my memory doesn't get hazy, it simply fails. There is no recollection what happened next. One minute I'm being asked to roll on my side, and then...nothing. My next conscious thought is the realization that I'm back in the first exam room. I have absolutely no idea what time it is. My nurse arrives and seeing that I'm awake, asks that all-important question: "Have you passed gas yet?". I answer in the affirmative. Without this vital action, I would not be allowed to go home. But the good news doesn't end there: my Colonscopy was clean! I had no issues with the previous surgical areas nor were there any polyps or concerns. What this meant to me is that I don't have to have another procedure for three more years!
I'm relieved and perhaps due to the medication I've received during my procedure, my shin isn't bothering me. It's noon on a sunny Tuesday, and I have a healthy colon. Life is balanced once more, time to celebrate. A small meal at a tiny restaurant just down the street from my doctor's office marks the extent of my celebration. I've learned the hard way not to indulge too much too fast after one of these procedures. However in a few days I'd be eating normally, with no adverse affects.
For the remainder of the day I simply rested, with numerous peaceful small naps. I didn't eat unless I felt hungry, and I only ate a little at at time. I drank more water, (but still couldn't finish the Gatorade). This time fortune had smiled upon me, and life is good. In three more years, we'll see if fortune begrudges me another pass to clean health.
Four previous colonscopies and two surgeries have removed any mystery or fears around the preparation process. The process itself is simple, as I follow the reduced-intake diet. This means soft foods three days before the procedure, full fluids two days before, and on the prep day itself, only clear liquids. As a result, I know I will be cold and tired and yes, at times, hungry. But these feelings only last for a little while. I'm weary of continually doing this process, but will keep doing it again as often as needed. Because it's absolutely necessary.
My procedure is scheduled for a Tuesday morning at 9:30AM. This is good, as I much prefer early morning than later afternoon. Early morning procedures mean the prep is essentially one day. My process however begins three days before, on the Saturday: Soft Food Day. On SFD I have scrambled eggs for breakfast (and sneak in a pancake). Supper is more scrambled eggs, and instant mashed potatoes. Cutting out fibre seems counter-intuitive, but the process works. Saturday was fine, save for the ongoing shin pain in my left leg. I can't have any aspirin or anything that would affect the prep or might be a bleeding risk, so I endure the throbbing. The most uncomfortable feeling during this latest procedure would be the shin pain; it made sleep difficult and walking painful. In a few weeks I would be limping whenever I walked, but for now, I just endured it and proceeded with the task at hand: not eating.
Sunday I'm on full fluids. This is actually the worst day in terms of hunger and eating, as there is a sharp decrease in my calorie intake, mostly because I'm eating plain vanilla Greek yogurt, milk, and cream soups (without crackers!). I don't particularly like creams soups for a couple of reasons. One, they're creamy, and just don't have the flavour and texture I enjoy. The other is that they are not pure cream soups: they have bits and pieces floating in them which must be removed. Suffice to say that I don't eat a lot of cream soups. I drink a lot of water, some ginger ale and green tea. I ignore any feelings of hunger, which do go away fairly quickly. I spend my evening watching a lot of TV and puttering around the house. Before I go to bed, I make Jello -green and yellow only, no red allowed!
I book Monday off of work, as this is prep day. It allows me to sleep in, and only do what I will need to do. So of course I can't sleep in. Instead, I decide to do yard work. I haven't done anything all Spring (not that we had much of a Spring so far), so naturally I spend the entire morning raking leaves and picking up sticks. In a little over an hour I'm exhausted. Moving inside the house I figure that a good sunny day requires a good sunny day activity: cleaning windows. That goes well but I'm feeling pretty weak and tired after this much manual labour. Physical work without nutrition is probably one of my sillier endeavors. However as I don't actually begin the prep until 3:00PM, I can't just sit around doing nothing or watch TV. Not yet at any rate.. I'm not hungry, at least for the choices offered: Broth, tea or coffee, and of course, Jello. Now I liked Jello as a kid. As an adult I'd make it on hot summer days and throw in a glob (or two, or three... ) of Ice Cream. After multiple go-rounds with the preparation process and hospital stays, I can honestly say that Jello is now firmly associated with some of the most unpleasant experiences in my life. Suffice to say, I only eat Jello when I'm undergoing the Prep. And this morning, I really don't feel like eating Jello for breakfast.
I drink a lot of water and green tea. I suck on hard candies (only green or yellow) for flavour. I tell myself that fasting is good for the soul (and waistline). The hard candies I am trying this time don't mix well with the green tea, and I find my palette has produced that annoying dry-mouth feeling that no amount of brushing seems to cleanse. A Halls cough-drop however has enough punch to remove the dry, slightly metallic after taste. But mostly my shin bothered me and I was uncomfortable sitting. Or standing. Or lying down to nap. My less-that-smart-choice this morning of doing yard work had aggravated my shin. I couldn't nap, and time passed slowly. Finally 3:00PM arrived, and I could finally start the preparation proper.
This preparation is called Purg Odan and it comes as three small packets that, when mixed with water, form the basis of the process. Every four hours I need to mix and drink one of these packets. They don't taste great, but they're not the worst thing I've ever consumed. During the process I drink lots of water. And ginger ale. And tea or coffee (I tried coffee again -instant though, and couldn't stand it. My taste buds are shot it seems) Also strongly recommended is to drink Gatorade to maintain electrolytes. The purge processes suck the liquid out of you and wash away electrolytes as well. The Gatorade I have is lemony-yellow. I would sip from it but found it difficult to drink. I found I had little desire to consume things other than water or the occasional green tea this time. I was tired and little energy to focus on highly technical activities, like changing the channel on the TV. And I still was bothered by my shin splints.
Within a few hours of taking the first packet ("sachet" is what the official packaging labels each packet) I was on my way to purge nirvana. At 7:00PM and 11:00PM I repeated the process. Having used other means to accomplish this task, I can say that the Purg Odan was no worse. In some ways it was better as I didn't feel so bloated after drinking 4 liters of the other stuff. But the end results were the same: drink some stuff, go the bathroom. Repeat.
Throughout the night the frequency and duration of the trips to the bathroom decreased. Yet it wasn't until 3:30AM when my bowels called a truce. I could finally sleep uninterrupted for a few hours.
Tuesday morning and I awoke early, and thirsty. I wouldn't be able to drink anything two hours before the exam. Which in my case meant by 7:30AM I was finished with consuming any fluids. A good thing, as any liquid taken in wants to go out by any available means it seems. At this point I'm essentially as cleaned out as I can be, and my weight is about 186lbs. I've lost about 7 pounds since the weekend. I'm tired and I'm cold, and I just want it be over. The time finally comes when I need to go to the clinic to have the last step performed.
My doctor's clinic has a remarkably large, very well lit, clean and modern looking waiting room. En suite bathrooms are there for those last minute emergencies. I arrived as instructed, 1/2 hour before my appointment time of 9:30. The registration is perfunctory, and my waiting time is minimal. I'm soon asked to go into the exam room. I'm on autopilot now, the familiar process plays out as it has so many times before: change into the standard johnny shirt, but you get to keep your socks on. "ProTip" -I wore my thickest warmest socks, as the single sheet you are given to cover you won't be warm enough. Everything is proceeding as it should, but my nurse informs me that there's a delay. However I'm still prepped with the IV, the only painful part of this whole process is the IV needle into my hand. My vitals are recorded, and once that's done I can rest. I'm somewhat tired but can't sleep. I'm surprisingly not thirsty or hungry. My shin pain is bothering me more than anything else. Time drags by and I realize I left my Samsung Galaxy player in the bag with all my clothes, so I can't even read or play a bad game of chess. Ten Thirty, I've been in this room for over an hour. Ten Fourty and it's now my turn. My bed and I are brought into the surgical suite. More waiting, then the anasthesiologist arrives. Some questions are asked: No I'm not a smoker - No allergies that I'm aware of save seasonal. I'm wired up to the various machines that record my vitals, then I'm left alone for a bit. During this time I play a game where I try to slow my breathing down to trigger the alarms on the machine that monitors my respiratory rates. I'm rewarded by little beeps as I get below 74, but only momentarily. It gives me something to do. At last my doctor arrives, now the real fun begins.
At this point my memory doesn't get hazy, it simply fails. There is no recollection what happened next. One minute I'm being asked to roll on my side, and then...nothing. My next conscious thought is the realization that I'm back in the first exam room. I have absolutely no idea what time it is. My nurse arrives and seeing that I'm awake, asks that all-important question: "Have you passed gas yet?". I answer in the affirmative. Without this vital action, I would not be allowed to go home. But the good news doesn't end there: my Colonscopy was clean! I had no issues with the previous surgical areas nor were there any polyps or concerns. What this meant to me is that I don't have to have another procedure for three more years!
I'm relieved and perhaps due to the medication I've received during my procedure, my shin isn't bothering me. It's noon on a sunny Tuesday, and I have a healthy colon. Life is balanced once more, time to celebrate. A small meal at a tiny restaurant just down the street from my doctor's office marks the extent of my celebration. I've learned the hard way not to indulge too much too fast after one of these procedures. However in a few days I'd be eating normally, with no adverse affects.
For the remainder of the day I simply rested, with numerous peaceful small naps. I didn't eat unless I felt hungry, and I only ate a little at at time. I drank more water, (but still couldn't finish the Gatorade). This time fortune had smiled upon me, and life is good. In three more years, we'll see if fortune begrudges me another pass to clean health.
Friday, April 3, 2015
Mystery in the Shadows
April first, All Fools Day, An auspicious way to meet one's oncologist. We meet today to discuss the results of two X-ray's and a CT scan earlier this year. My family doctor was concerned enough to inform my oncologist. Now my oncologist is concerned too, for there is a shadow in my lung that shouldn't be there.
In the oncologists office I am examined, and all my vitals are normal, no fever, no cough, and certainly no vestiges of pneumonia from three months prior. I feel fine, save for an aggravated left tibia: shin splints. But no, that's not the problem. My oncologist was concerned about the shadow on my X-ray. And now, so am I.
We don't know if it's Cancer or an infection. The unknown shadow will be viewed by a CT scan I'm to have two weeks from now. However it was the CEA results from my blood work that I found troubling: they're increasing, slowly, but steadily.
Last May my CEA numbers hovered around 1. Now they're around 3. These numbers can increase significantly if I was a smoker. I've never smoked in my life, so this begs the question: why is it increasing? Another CT and more blood work will begin the investigation, but what will be the results?
So there's a mystery in the shadows, and the possible answers are troubling. I would leave this appointment preoccupied with the implications of what I had learned this afternoon. As I was handed the card for my next appointment, I commented to the nurse that this would be an opportune time to say "April Fools". She obliged my weak comment with a smile, making me feel somewhat better.
For the first time in a long time I left the Cancer Clinic with less confidence than when I entered. Cancer can still reach out to hit me, and not always physically. Attitude is not only confidence -real or imagined - but being willing to yield when necessary, to adjust attitudes, and just as importantly, my outlook on life.
In the oncologists office I am examined, and all my vitals are normal, no fever, no cough, and certainly no vestiges of pneumonia from three months prior. I feel fine, save for an aggravated left tibia: shin splints. But no, that's not the problem. My oncologist was concerned about the shadow on my X-ray. And now, so am I.
We don't know if it's Cancer or an infection. The unknown shadow will be viewed by a CT scan I'm to have two weeks from now. However it was the CEA results from my blood work that I found troubling: they're increasing, slowly, but steadily.
Last May my CEA numbers hovered around 1. Now they're around 3. These numbers can increase significantly if I was a smoker. I've never smoked in my life, so this begs the question: why is it increasing? Another CT and more blood work will begin the investigation, but what will be the results?
So there's a mystery in the shadows, and the possible answers are troubling. I would leave this appointment preoccupied with the implications of what I had learned this afternoon. As I was handed the card for my next appointment, I commented to the nurse that this would be an opportune time to say "April Fools". She obliged my weak comment with a smile, making me feel somewhat better.
For the first time in a long time I left the Cancer Clinic with less confidence than when I entered. Cancer can still reach out to hit me, and not always physically. Attitude is not only confidence -real or imagined - but being willing to yield when necessary, to adjust attitudes, and just as importantly, my outlook on life.
Saturday, March 21, 2015
"I don't want to scare you..."
The New Year started with a cold, which morphed into pneumonia. X-rays and CT confirmed the diagnosis, so I was given antibiotics. I would need to get another X-ray in a month. This follow-up X-ray occurred on the last Friday of February. The first Monday of March there was a message from my family doctor. He wanted me to go for another CT scan.
Another CT scan. My last scan was a mere two months ago. I figured they were concerned about the slightly enlarged lymph nodes in my chest. A call to the family doctor should clarify this, I thought. Unfortunately it wasn't the lymph nodes, and Wednesday morning found me sitting in another exam room being informed of his concerns: there was a small mass in my chest.
This wasn't news to me, as it had been noticed on the prior X-rays, and was always assumed that it was pneumonia. However considerable time has passed since that original diagnosis. Now this disconcerting X-ray has my family doctor concerned. I felt fine, and relatively unconcerned. That is until he said those words: "I don't want to scare you...". Uh oh...
Actually I left the office more depressed than scared; I wouldn't be scared until I started doing internet searches. I should have remembered: when you have an unknown medical condition Don't Search The Web. My family doctor's worrying was more that just a conversation, he contacted my oncologist personally to express those concerns. So it wasn't a surprise when the call came from the oncologist's office: I had an appointment booked for April 1st. I would need to have my usual blood work a couple of weeks before that. I hadn't expected to see the oncologist for another four months, and that only added to my concerns. Now I was getting scared.
So for a few days I tried to not surf the web for 'Lung cancers & other terrible diseases'. My dad had died of lung cancer, but I never had his three-pack-a-day habit. Nor did I ever work in Asbestos or Uranium mines like he once did. Thus I firmly embraced my family doctor's thoughts that it might 'simply' be scar tissue. Not sure what kind of atmosphere I'm breathing to cause that effect however.
Eventually the concern subsided and I resumed my normal, humdrum boring life. I went to work. I puttered with my hobbies. Sometimes I would catch myself taking extra-deep breaths, as if somehow the inability to completely fill my lungs was a symptom of some horrible condition. My fears gradually faded, and I stopped obsessing, remembered that I felt fine, and was not in any pain (actually my left shin was bothering me but I figured it's only my arthritis). If there's a problem I'll find out soon enough.
The remainder of March would find me getting poked by the vampire crews at the local lab and cancer centre. Getting prescription refills for the cholesterol and arthritis medications I take daily, fulfilling the boring medical stuff of my life. My calendar has shifted from the Julian to the Caduceus manner of reckoning.
April will be no less busy. Besides the visit with the oncologist to determine what they'll do about my chest, there's an upcoming colonoscopy. Even though it's my fifth such procedure (and my seventh time going through 'The Prep') it's not something I look forward too. But it's part of my process now, and something necessary for my continued well-being. I'll just have to adopt that same philosophy for whatever procedure my oncologist deems necessary for my lung examination. Likely it's going to involve another tube going taking the scenic route through my body. I'm sure I'll have something to write about after that experience.
Another CT scan. My last scan was a mere two months ago. I figured they were concerned about the slightly enlarged lymph nodes in my chest. A call to the family doctor should clarify this, I thought. Unfortunately it wasn't the lymph nodes, and Wednesday morning found me sitting in another exam room being informed of his concerns: there was a small mass in my chest.
This wasn't news to me, as it had been noticed on the prior X-rays, and was always assumed that it was pneumonia. However considerable time has passed since that original diagnosis. Now this disconcerting X-ray has my family doctor concerned. I felt fine, and relatively unconcerned. That is until he said those words: "I don't want to scare you...". Uh oh...
Actually I left the office more depressed than scared; I wouldn't be scared until I started doing internet searches. I should have remembered: when you have an unknown medical condition Don't Search The Web. My family doctor's worrying was more that just a conversation, he contacted my oncologist personally to express those concerns. So it wasn't a surprise when the call came from the oncologist's office: I had an appointment booked for April 1st. I would need to have my usual blood work a couple of weeks before that. I hadn't expected to see the oncologist for another four months, and that only added to my concerns. Now I was getting scared.
So for a few days I tried to not surf the web for 'Lung cancers & other terrible diseases'. My dad had died of lung cancer, but I never had his three-pack-a-day habit. Nor did I ever work in Asbestos or Uranium mines like he once did. Thus I firmly embraced my family doctor's thoughts that it might 'simply' be scar tissue. Not sure what kind of atmosphere I'm breathing to cause that effect however.
Eventually the concern subsided and I resumed my normal, humdrum boring life. I went to work. I puttered with my hobbies. Sometimes I would catch myself taking extra-deep breaths, as if somehow the inability to completely fill my lungs was a symptom of some horrible condition. My fears gradually faded, and I stopped obsessing, remembered that I felt fine, and was not in any pain (actually my left shin was bothering me but I figured it's only my arthritis). If there's a problem I'll find out soon enough.
The remainder of March would find me getting poked by the vampire crews at the local lab and cancer centre. Getting prescription refills for the cholesterol and arthritis medications I take daily, fulfilling the boring medical stuff of my life. My calendar has shifted from the Julian to the Caduceus manner of reckoning.
April will be no less busy. Besides the visit with the oncologist to determine what they'll do about my chest, there's an upcoming colonoscopy. Even though it's my fifth such procedure (and my seventh time going through 'The Prep') it's not something I look forward too. But it's part of my process now, and something necessary for my continued well-being. I'll just have to adopt that same philosophy for whatever procedure my oncologist deems necessary for my lung examination. Likely it's going to involve another tube going taking the scenic route through my body. I'm sure I'll have something to write about after that experience.
Sunday, February 22, 2015
2015 began with a cough...
January is only three weeks old and I've already had an Xray, blood work and a CT scan. It all began on New Years day, with a cough.
The cough started in the evening, and at first I thought nothing of it. Chills followed shortly after. I figured it was just a cold, and I'd be going to work the next morning. Then a headache progressed to the point where I finally took an Aspirin in a vain hope of some relief. A runny nose, watery eyes, and coughs that came in spasms soon followed. Sleep was non-existent and I was worn out by the time morning arrived. Determined -or perhaps just stupid -I tried to go to work.
My resolve failed when it became apparent that I couldn't keep my balance while trying to stay upright. New plan: crawl back to bed and continue to be miserable for the rest of the day. Nailed it. My cold would last for days. Only one other time in the 1980's have I ever felt this sick from a 'simple' cold.
Four days after greeting the New Year with a cold I felt better and was ready to return to work. That was Monday, and Wednesday I was scheduled to have my annual CT. Being somewhat cautious, I opted to postpone the Wednesday visit, rationalizing that a few more days would make me less susceptible to any nasty bugs that might lurk in Hospital waiting areas. With my exam rescheduled til the following Monday, I had a relatively boring and seemingly healthy work week.
A CT exam for me is no longer a big deal. In fact it's downright boring, so I thought I'd mix it up a bit: Banana flavoured RediCat. It's yummy delicious, that is if you're into chalk-flavoured banana drinks. I would need to drink two bottle:, one the night before, and one just prior to the exam.
I drink my room-temperatured flavoured chalk (a.k.a. "RediCat") at 10:00PM the night before my exam. I won't have breakfast as you can't eat three hours prior to the procedure. First stop is at the Cancer Centre lab, where my right arm is picked. The important maker here will be the CEA but that result won't be available for weeks. Preliminaries are over, now it's time for the main event.
After registering at the Diagnostic Imaging desk I'm directed to the CT suite. From there I'm instructed to drink my second bottle of RediCat. It tastes as good as the first bottle. My left arm will be used for the IV that will administer contrast material during the exam. I don't look forward to the warm, slightly unpleasant sensation that I've somehow soiled myself. A few minutes of being told to "take a breath and hold....breathe normally" and my exam is complete. I have two new badges to honour my visit: bandages on each arm as reminders of what I went through today. Finished with the Hospital, I can now go back to work, and finally have something to eat!
My cough returns later that night, maybe I picked up something from my recent hospital exam. The next two days the cough gets worse. So much so that my worried manager urges me to get it checked out. At lunch I head over to the clinic, and by the afternoon they're pretty sure I have pneumonia, and order an Xray of my chest. The clinic doctor is concerned, she sees a mass in my chest and wants to do another CT. Since I just had a CT two days prior, I take a pass on getting irradiated yet again. But I make an appointment with my family doctor just in case.
The family doctor has the results of my recent CT, and sure enough, it's pneumonia. He prescribes another series of antibiotics for me. I'll take these ones for ten days, and in a month I'll go back to the clinic for another Xray. All this in January, and I still had an appointment with my oncologist.
Appointments at the Cancer Centre require a self-assessment (ESAS) , and aside from some tiredness, I think I'm doing OK. My weight is checked and I notice that the value is in the 190lb range, back where I was five years ago. I blame cookies.
The meeting with the oncologist told me two things: one the CT showed pneumonia(!) and secondly that the enlarged lymph nodes in my chest had not changed perceptibly in the past year. For now the protocol is to keep doing blood work every three months, with yet another CT in six months. Should there be a significant increase in the size of the lymph nodes, I'll likely need to undergo chemo once more. We'll see what Summer will bring me.
However before the next CT, I'll undergo a follow-up colonoscopy in April. This is my life now: a CT here, a colonoscopy there, and always one day at a time.
The cough started in the evening, and at first I thought nothing of it. Chills followed shortly after. I figured it was just a cold, and I'd be going to work the next morning. Then a headache progressed to the point where I finally took an Aspirin in a vain hope of some relief. A runny nose, watery eyes, and coughs that came in spasms soon followed. Sleep was non-existent and I was worn out by the time morning arrived. Determined -or perhaps just stupid -I tried to go to work.
My resolve failed when it became apparent that I couldn't keep my balance while trying to stay upright. New plan: crawl back to bed and continue to be miserable for the rest of the day. Nailed it. My cold would last for days. Only one other time in the 1980's have I ever felt this sick from a 'simple' cold.
Four days after greeting the New Year with a cold I felt better and was ready to return to work. That was Monday, and Wednesday I was scheduled to have my annual CT. Being somewhat cautious, I opted to postpone the Wednesday visit, rationalizing that a few more days would make me less susceptible to any nasty bugs that might lurk in Hospital waiting areas. With my exam rescheduled til the following Monday, I had a relatively boring and seemingly healthy work week.
A CT exam for me is no longer a big deal. In fact it's downright boring, so I thought I'd mix it up a bit: Banana flavoured RediCat. It's yummy delicious, that is if you're into chalk-flavoured banana drinks. I would need to drink two bottle:, one the night before, and one just prior to the exam.
I drink my room-temperatured flavoured chalk (a.k.a. "RediCat") at 10:00PM the night before my exam. I won't have breakfast as you can't eat three hours prior to the procedure. First stop is at the Cancer Centre lab, where my right arm is picked. The important maker here will be the CEA but that result won't be available for weeks. Preliminaries are over, now it's time for the main event.
After registering at the Diagnostic Imaging desk I'm directed to the CT suite. From there I'm instructed to drink my second bottle of RediCat. It tastes as good as the first bottle. My left arm will be used for the IV that will administer contrast material during the exam. I don't look forward to the warm, slightly unpleasant sensation that I've somehow soiled myself. A few minutes of being told to "take a breath and hold....breathe normally" and my exam is complete. I have two new badges to honour my visit: bandages on each arm as reminders of what I went through today. Finished with the Hospital, I can now go back to work, and finally have something to eat!
My cough returns later that night, maybe I picked up something from my recent hospital exam. The next two days the cough gets worse. So much so that my worried manager urges me to get it checked out. At lunch I head over to the clinic, and by the afternoon they're pretty sure I have pneumonia, and order an Xray of my chest. The clinic doctor is concerned, she sees a mass in my chest and wants to do another CT. Since I just had a CT two days prior, I take a pass on getting irradiated yet again. But I make an appointment with my family doctor just in case.
The family doctor has the results of my recent CT, and sure enough, it's pneumonia. He prescribes another series of antibiotics for me. I'll take these ones for ten days, and in a month I'll go back to the clinic for another Xray. All this in January, and I still had an appointment with my oncologist.
Appointments at the Cancer Centre require a self-assessment (ESAS) , and aside from some tiredness, I think I'm doing OK. My weight is checked and I notice that the value is in the 190lb range, back where I was five years ago. I blame cookies.
The meeting with the oncologist told me two things: one the CT showed pneumonia(!) and secondly that the enlarged lymph nodes in my chest had not changed perceptibly in the past year. For now the protocol is to keep doing blood work every three months, with yet another CT in six months. Should there be a significant increase in the size of the lymph nodes, I'll likely need to undergo chemo once more. We'll see what Summer will bring me.
However before the next CT, I'll undergo a follow-up colonoscopy in April. This is my life now: a CT here, a colonoscopy there, and always one day at a time.
Friday, January 2, 2015
Five years after
When I turned fifty I was diagnosed with stage 4 colon cancer. Over the course of a year I was immersed in treatment. Surgery, chemotherapy, X-rays and CT scans to see how far it had spread. And always blood work. I've probably given enough blood samples to sate Count Dracula. That was five years ago. Early in 2014 I had a recurrence of my cancer, which surgery has hopefully fixed. In October I celebrated my fifty-fifth birthday. Five years since my up-close and very personal encounter with Cancer.
Since my treatment ended in 2011 I kept up with the required tests: blood work, CT scans and the always fun Colonoscopy. It was a colonoscopy in February of 2014 that found a polyp. This same colonoscopy showed cancer has returned to the original site. When I received the news I thought I would have to do it all over again: the surgery, the chemotherapy, the return to living only for today. Fortunately surgery has proved sufficient. I would be off for five weeks to recover before I returned to work full-time once more. I had once again "beaten" cancer, so I should be happy. But I wasn't.
It dawned on me that you simply don't cure cancer. Certainly you can make it go away, eradicate it's effects for a time. But you don't cure it. It came uninvited into my life on two separate occasions. Despite medical diligence it surprised both myself and my doctors with its return. This has caused me to wonder what will happen next.
What happened next was simple: life went on. I returned to work after this latest surgery, fortunately without any complications. My biggest fear during the weeks before surgery would be that I would need a Colostomy bag. This time it wasn't needed. But it made me wonder if I have the emotional strength to keep adapting to radical changes in my physical health and my self perception. I may be resilient and even adaptable, but I know that won't always be the case.
In time I healed. Once more I returned to work. The memories of my fears before surgery faded. Seasons changed, the Fall arrived, and with it my birthday. I would turn fifty-five in 2014. In the five years since my initial diagnosis I've had my share of adventures, of fears and of triumphs. The new year will bring more tests, and I'll worry when I need to worry. Until then, just like everyone else, I'll live my life, one day at a time.
Friday, October 17, 2014
ER: a great TV show, no fun to visit
Labour day is one of those Holidays where you don't go to work, but stuff needs to get done. Fortunately this obligation required only about an hour of my time at the office, leaving the evening free for me to do whatever I wish. This evening I wished to lay on the couch and watch TV. Generally reclining on a couch is not associated as being a painful activity, so imagine my surprise when I experienced pain from the simple act of sitting upright. It was sharp and sudden, deep inside, somewhere under my left ribs. I had never experienced a pain in this location before. I wondered if I was so lazy that sitting on a couch would cause me to pull a muscle. It was annoying but seemed to be getting no worse. That is, until I went to bed that night.
Normally I sleep comfortably on my right side. My first sign that things were going to be troublesome involved the simple act of getting into bed and lying down. It hurt. A lot. Sharp pain, deep in my chest , seeming to be under the ribs on my left side. It hurt to roll on my right side. Or to the left. Lying on my back was no better. I spent a miserable night wondering if I should go to the ER. The only position that was somewhat comfortable was sitting up. I might have dozed, in fits and starts but I did not rest. Morning did not bring any relief, and I was having a miserable time simply moving through my usual routine. I would walk to work that day, and noticed that it hurt to take deep breaths. It seemed that a visit to the local clinic was in order.
Fortunately that Tuesday morning the clinic traffic was relatively light and I was ushered in quickly after I was registered. My nurse took the usual vitals: temperature, blood pressure, heart rate. Everything seemed OK. I was then examined by the clinic doctor, who said that although they could give me an EKG, they didn't have the resources to fully rule out any heart-related issues. For that I would need to go to our local ER.
The last time I was in this particular ER was shortly after receiving my first chemo treatment. Back then I was treated for Thrush and given a stern reminder about going to an ER when chemo-compromised. Now almost five years later, I note the changes that have occurred. The registration process still consists of a security guard directing you where to sit, in this case the Triage Registration Waiting Area. No longer the hard plastic industrial seats, these are almost comfortable. I wait for my turn to be seen by the nurse, resigning myself to the fact that I must have something horribly wrong with me else why I did I come to Emerg? My turn arrives to visit the nurse. As I rise I struggle to lift my backpack without grimacing. In triage I dutifully tell the nurse my story of the sudden onset of my pain, the subsequent visit to a clinic, and the redirect to the ER. My oxygen and temperature stats are checked, then I'm sent to the Registration Waiting Area.
Registration is quick, and a familiar face greets me from the other side of the desk. An associate who remembers me from when I once worked as an IT tech at this same hospital over twenty years prior comments that the last time we saw each other was in this same ER back in 2005. Back then I was seeking relief from extreme pain caused by a kidney stone. Today's issue were not as raw, but I felt it was something that needed to be checked regardless. Registration complete, I'm sent back to the waiting room. Less than half an hour later, I hear my name being called, and I think that at this rate I'll be back to work later that afternoon. I would soon learn how inaccurate that thought would be.
It turned out that I was being called not to see the doctor, but to be given some preliminary tests. As I had presented with chest pain, I would be receiving an EKG. A blood samples would also be taken. In total my pleasant tech and I spent perhaps less than 15 minutes together, after which I returned to the waiting area once more. My real ER experience was just beginning.
I'm well-prepared to wait it would seem: laptop, tablet, MP3 player, all manner of diversions which make it appear that we are constantly connected to the larger world. But WiFi reception was poor, the slowly loading web pages seemingly a mirror to how time crawls by in the ER. I canceled an appointment for an eye exam that was scheduled for later that day. That was at 2:00PM. By 5:00PM I wondered if I should have had lunch. During my wait I had only sipped on some water, steadfastly refusing to eat anything "just in case". Now going on six hours, I was no longer anxious, just uncomfortable, bored and tired. I would continue waiting til around 6:00PM, when I was finally ushered into the ER proper. I kept thinking that six hours wasn't so bad. But I was wrong once more.
Inside the ER I get to wait some more. This time I sit on hard plastic chairs consistent with my general perception of ER waiting rooms. It appears that I'm just waiting until an exam room becomes available. I'm brought in when it's ready, and the ER nurse performs more checks on my general health. I'm informed I'll be going for a CT scan. Before the scan takes place however, I'll moved to another waiting area, the fifth of my sojourn. The chairs in this waiting area are the most comfortable so far. There's a patient seated beside me, receiving an IV. She's wrapped in a blanket and looks exhausted. I say hello, as I recognized that we had both arrived at the Hospital at roughly the same time. We chat a bit, exchanging our medical histories as perfect strangers seem to do in this situation. She has terminal stage 4 lung cancer. I tell her my story. We find we're both being sent for CT's. Our porter brings her via wheelchair to the CT suite. I walk the short distance, glad of the small relief for cramped muscles and inactivity of the past eight hours.
It's quiet in the CT suite, lights subdued and sounds muted. My fellow patient has her exam first. My turn is soon after. The methodical and efficient CT techs have us in and out of there in short order. I have another CT exam to add to my collection. Exam complete, my co-patient and I wait for the porter to retrieve us, returning us back to the ER. It is almost eight hours since I was registered. I've had an EKG, blood test and my vital signs recorded. I've just finished a CT and now I finally get to see the doctor. She's all smiles and tells me she has good news.
It's not a heart problem: I have pneumonia. How can this be good I wonder? My doctor assures me that it was caught very early and the antibiotics she prescribes will help. She also mentioned that they checked for evidence of cancer in my lungs -given my past history I suppose that's a good thing. There was nothing of note. With that diagnosis my ER visit was nearly over. A nurse would remove my IV lock, and after that I was free to go home, over eight hours after I had first walked into the Hospital.
On the way home we stop at a pharmacy to fill the prescription. A course of five days, two pills the first night and one a day for the next four days. I'm told by the pharmacist that I'll feel better tomorrow. I figure I can't feel any worse: sore chest, tired and drained of any energy, yet I did nothing all day but sit. I hadn't eaten until I was discharged from ER. I had no appetite. I just wanted to sleep.
I would take the next day off, mostly to recover my energy, and hopefully not be affecting anyone when I returned to work. When I was given my diagnosis of pneumonia by the ER physician, I had asked her how I got it. She candidly admitted that she didn't know. I guess in life we can never assume there's a visible cause and effect for everything. But I was OK, and after my day off which consisted of many many hours of doing nothing but napping, I felt a lot better.
I would take the entire course of my antibiotics, and by the end of the week my long vigil in ER was a fading memory. It would be a footnote in my blog, something tangential to my history within our medical system. I reflect on what this latest dip into the health care pool meant to me, and admitted to myself that my concern wins over my confidence these days. Terry at age forty would have shrugged off the nagging chest pain as an annoyance and ignored it. Nearly 55, I have learned to accept that you cannot resist the passage of Time, but you can still control the course of where you're going. The day I spent in ER was something I chose to do. Had I not gone, there might have been considerable more time in Hospital recovering from far more perilous effects of that pneumonia. The choices life gives us aren't always what we want, but what we make of them is entirely our own.
Normally I sleep comfortably on my right side. My first sign that things were going to be troublesome involved the simple act of getting into bed and lying down. It hurt. A lot. Sharp pain, deep in my chest , seeming to be under the ribs on my left side. It hurt to roll on my right side. Or to the left. Lying on my back was no better. I spent a miserable night wondering if I should go to the ER. The only position that was somewhat comfortable was sitting up. I might have dozed, in fits and starts but I did not rest. Morning did not bring any relief, and I was having a miserable time simply moving through my usual routine. I would walk to work that day, and noticed that it hurt to take deep breaths. It seemed that a visit to the local clinic was in order.
Fortunately that Tuesday morning the clinic traffic was relatively light and I was ushered in quickly after I was registered. My nurse took the usual vitals: temperature, blood pressure, heart rate. Everything seemed OK. I was then examined by the clinic doctor, who said that although they could give me an EKG, they didn't have the resources to fully rule out any heart-related issues. For that I would need to go to our local ER.
The last time I was in this particular ER was shortly after receiving my first chemo treatment. Back then I was treated for Thrush and given a stern reminder about going to an ER when chemo-compromised. Now almost five years later, I note the changes that have occurred. The registration process still consists of a security guard directing you where to sit, in this case the Triage Registration Waiting Area. No longer the hard plastic industrial seats, these are almost comfortable. I wait for my turn to be seen by the nurse, resigning myself to the fact that I must have something horribly wrong with me else why I did I come to Emerg? My turn arrives to visit the nurse. As I rise I struggle to lift my backpack without grimacing. In triage I dutifully tell the nurse my story of the sudden onset of my pain, the subsequent visit to a clinic, and the redirect to the ER. My oxygen and temperature stats are checked, then I'm sent to the Registration Waiting Area.
Registration is quick, and a familiar face greets me from the other side of the desk. An associate who remembers me from when I once worked as an IT tech at this same hospital over twenty years prior comments that the last time we saw each other was in this same ER back in 2005. Back then I was seeking relief from extreme pain caused by a kidney stone. Today's issue were not as raw, but I felt it was something that needed to be checked regardless. Registration complete, I'm sent back to the waiting room. Less than half an hour later, I hear my name being called, and I think that at this rate I'll be back to work later that afternoon. I would soon learn how inaccurate that thought would be.
It turned out that I was being called not to see the doctor, but to be given some preliminary tests. As I had presented with chest pain, I would be receiving an EKG. A blood samples would also be taken. In total my pleasant tech and I spent perhaps less than 15 minutes together, after which I returned to the waiting area once more. My real ER experience was just beginning.
I'm well-prepared to wait it would seem: laptop, tablet, MP3 player, all manner of diversions which make it appear that we are constantly connected to the larger world. But WiFi reception was poor, the slowly loading web pages seemingly a mirror to how time crawls by in the ER. I canceled an appointment for an eye exam that was scheduled for later that day. That was at 2:00PM. By 5:00PM I wondered if I should have had lunch. During my wait I had only sipped on some water, steadfastly refusing to eat anything "just in case". Now going on six hours, I was no longer anxious, just uncomfortable, bored and tired. I would continue waiting til around 6:00PM, when I was finally ushered into the ER proper. I kept thinking that six hours wasn't so bad. But I was wrong once more.
Inside the ER I get to wait some more. This time I sit on hard plastic chairs consistent with my general perception of ER waiting rooms. It appears that I'm just waiting until an exam room becomes available. I'm brought in when it's ready, and the ER nurse performs more checks on my general health. I'm informed I'll be going for a CT scan. Before the scan takes place however, I'll moved to another waiting area, the fifth of my sojourn. The chairs in this waiting area are the most comfortable so far. There's a patient seated beside me, receiving an IV. She's wrapped in a blanket and looks exhausted. I say hello, as I recognized that we had both arrived at the Hospital at roughly the same time. We chat a bit, exchanging our medical histories as perfect strangers seem to do in this situation. She has terminal stage 4 lung cancer. I tell her my story. We find we're both being sent for CT's. Our porter brings her via wheelchair to the CT suite. I walk the short distance, glad of the small relief for cramped muscles and inactivity of the past eight hours.
It's quiet in the CT suite, lights subdued and sounds muted. My fellow patient has her exam first. My turn is soon after. The methodical and efficient CT techs have us in and out of there in short order. I have another CT exam to add to my collection. Exam complete, my co-patient and I wait for the porter to retrieve us, returning us back to the ER. It is almost eight hours since I was registered. I've had an EKG, blood test and my vital signs recorded. I've just finished a CT and now I finally get to see the doctor. She's all smiles and tells me she has good news.
It's not a heart problem: I have pneumonia. How can this be good I wonder? My doctor assures me that it was caught very early and the antibiotics she prescribes will help. She also mentioned that they checked for evidence of cancer in my lungs -given my past history I suppose that's a good thing. There was nothing of note. With that diagnosis my ER visit was nearly over. A nurse would remove my IV lock, and after that I was free to go home, over eight hours after I had first walked into the Hospital.
On the way home we stop at a pharmacy to fill the prescription. A course of five days, two pills the first night and one a day for the next four days. I'm told by the pharmacist that I'll feel better tomorrow. I figure I can't feel any worse: sore chest, tired and drained of any energy, yet I did nothing all day but sit. I hadn't eaten until I was discharged from ER. I had no appetite. I just wanted to sleep.
I would take the next day off, mostly to recover my energy, and hopefully not be affecting anyone when I returned to work. When I was given my diagnosis of pneumonia by the ER physician, I had asked her how I got it. She candidly admitted that she didn't know. I guess in life we can never assume there's a visible cause and effect for everything. But I was OK, and after my day off which consisted of many many hours of doing nothing but napping, I felt a lot better.
I would take the entire course of my antibiotics, and by the end of the week my long vigil in ER was a fading memory. It would be a footnote in my blog, something tangential to my history within our medical system. I reflect on what this latest dip into the health care pool meant to me, and admitted to myself that my concern wins over my confidence these days. Terry at age forty would have shrugged off the nagging chest pain as an annoyance and ignored it. Nearly 55, I have learned to accept that you cannot resist the passage of Time, but you can still control the course of where you're going. The day I spent in ER was something I chose to do. Had I not gone, there might have been considerable more time in Hospital recovering from far more perilous effects of that pneumonia. The choices life gives us aren't always what we want, but what we make of them is entirely our own.
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