Sunday, July 30, 2006

An Unwanted Journey: Day 0250 - Half Way Through Chemotherapy


This was a banner week. I am half-way through my chemotherapy with only four more treatments left. In addition, I was able to successfully complete a full week of work with my employer for the first time since before surgery at the end of March.

These are milestones along my road to recovery that mean a lot to me. With the end in sight for chemo treatments, I have a sense of optimism about getting better not just for a few days between treatments, as is the case now, but in a continual improvement over the course of the months leading up to Christmas.

I was even able to get to the gym for a light cardio workout on the treadmill, again something that has not been possible since before surgery. It's hard to describe just how great a sense of accomplishment that was, even though I was very careful to monitor my pulse rate and ensure that I was not overdoing the exertion level. I still won't be able to do any weight training until after the PICC line is removed, but it feels great to even be thinking about improving my fitness level.

Work was a struggle this week, but well worth the effort. Colleagues seemed pleased to see me and to start itemizing all the IT-related tasks they would like me to address. There were times in my office when the fatigue was pronounced, but I managed to slog through those moments and complete full days.

My invitation to others, friends and colleagues, to participate in the World Community Grid projects, especially the one to Help Defeat Cancer, was also a step towards health. In fact, as I get better, it seems natural to start thinking more about others and about making a difference in the overall fight against cancer. There are so many things that can be done; the trick will be finding those opportunities that match my abilities and aptitudes. The World Community Grid project is, I think, a perfect match for the moment.

Please join me in this. It doesn't cost anything and has great potential.

If you know of any other projects that a recovering cancer fighter should consider, please feel free to comment or to write to me personally. I want many, many more banner weeks.

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Sunday, July 23, 2006

An Unwanted Journey: Day 0243 - Help Defeat Cancer


Does your desktop computer or notebook ever sit idle? If so, then you are a prime candidate to donate unused computer time to a project called Help Defeat Cancer which began July 20th, 2006. All you have to do is visit www.worldcommunitygrid.org and become a member.

Before I discuss why you absolutely must do this, please rest assured that doing so will not make your computer less secure nor interfere with your regular computing. There is also no cost involved other than the time you take to become a member of IBM's World Community Grid. Nor should you worry about operating systems - Windows, Linux and Mac are all supported.

Once you have downloaded and installed the software agent, you will get a message on the Grid Agent window which should warm your heart (I strongly recommend you complete the member profile when you set up your membership; consider joining me in the Cancer Fighters team which is the largest; this team has, at the time of writing, contributed over 26 years of idle computing time to the grid projects):

Your machine is systematically sifting through the multi-dimensional features of imaged cancer specimens to unveil the underlying protein and molecular patterns of breast, head and neck cancers.

No, the project doesn't deal specifically with colorectal cancer at this point. Still, the idea that the grid can instantly become as powerful or more powerful than the world's most sophisticated supercomputer and that it can be used to combat one of the world's most devastating scourges has to make you feel good!

So why bother?

The World Health Organization estimates that 7 million deaths each year are caused by cancer, 12.5% of all deaths worldwide. We are all aware of the major classes of cancer such as lung, breast, colorectal, etc. What this project does is deal with subclasses of cancer, the identification of which is sometimes key to treatment protocols. One of the newer investigative tools used by scientists is tissue microarrays (TMA) that promise to help oncologists select proper treatment strategies and provide patients with a more accurate prognosis.

Using computer-aided analysis, it has been shown that TMAs are more objective, reproducible, and sensitive. With improvements in TMAs, new drugs can be developed and therapy planning can be enhanced.

The World Community Grid promises dramatic improvements in analyzing Tissue Microarrays. IBM's grid can process TMAs far faster and in greater quantities than possible with traditional computer resources. Hundreds of arrays can be processed in parallel instead of one at a time or in small batches.

So, please, join me to Help Defeat Cancer. Feel free to email me about your decision.
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Tuesday, July 18, 2006

An Unwanted Journey: Day 0238 - Waiting for Good Days


I know, I know. Even when I was in hospital suffering from complications, I somehow found time to compose blog entries about my experiences, research, and reflections on my battle with cancer. Now, I'm just undergoing chemotherapy, trying to work part-time (telecommuting mostly), and fighting my way back into a semblance of a normal life. And yet I can't seem to find the energy to compose a blog entry. Has my life become so predictable and boring?

Not really. But fatigue is a very strange creature. It sits on your chest with a sardonic smile making snide comments about how you're now half the man you used to be. You can try to push it out of the way or even argue, but the fact remains that fatigue will have an impact. And it does.

As I go through this third treatment cycle, I'm beginning to feel a bit better again. There were some complications on the day of infusion, beginning with a doubling up of the anti-nausea medication. Thankfully, I had a very observant chemotherapy suite nurse who noticed that my oral medication and my "opus" medication were actually giving me 22 mg of the steroid when I only should have received 16 mg. She said, "You'll probably be quite hungry and full of energy this evening. You may have a hard time sleeping tonight." As it turned out, I slept immediately for about 2.5 hours and then stayed awake until early in the morning.

In addition, as I began to get ready to leave the chemotherapy suite, I noticed the telltale tingling in my right hand. By the time I reached the car, both hands were tingling, so much so that I had to "palm" the steering wheel to have any chance of driving myself home. But the sensitivity was so acute that I could barely open the car door and use my keys to get into the house.

A couple days later that same chemotherapy suite nurse called to say that because I was suffering neuropathy symptoms immediately after treatment, they would double up the magnesium/calcium infusion for my 4th treatment cycle.

And so it goes. This time, there was some nausea and general fatigue Saturday, Sunday, and Monday. There was intermittment neuropathy and sensitivity to cold foods as well as frequent bowel movements, so much so, in fact, that I felt like I was either in bed or on the toilet all three days.

But now it's a bit better. Even more importantly, I know that it will probably get better now for another 7 days.

Compared to so many others going through chemotherapy, my struggles are minor annoyances. It's just that it seems like a long, long time since we began treatment in January. But, if I look forward, I've only got to hold on until the beginning of October. By then, I should be able to anticipate days, weeks, and months of feeling better than I have all year. I can hardly wait!
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Tuesday, July 11, 2006

An Unwanted Journey: Day 0231 - Walking for Survival


Today I came across articles in the Journal of Clinical Oncology about post-diagnosis activity and the prevention of recurrence of colorectal cancer. It appears that increased activity levels - say, walking a mile six times a week- result in a very substantial increase in the prevention of colorectal cancer recurrence.

One of the key concepts in the articles was the metabolic equivalent task (MET). Using that standard for measurement, the studies indicate that protective effects occur with as little as 9+ MET-hours per week, with increasing protective effect up to 27+ MET-hours per week, after which protective effect plateaus with physical activity. 9+ MET-hours is the equivalent of 4 or 5 weekly 30-minute sessions of brisk walking.

The good news for cancer patients is that the exercise regimen is all post-diagnosis and post-treatment and is independent of physical activity levels and fitness levels prior to or during treatment. Overall reduction in risk for recurrence was approximately 50% to 60%.

The data is still observational in nature and many questions remain. Still, the correlations are significant and support the intuitive belief that reasonable exercise levels could prevent progression or recurrence of cancer.
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Monday, July 10, 2006

An Unwanted Journey: Day 0230 - Commencing Chemo Cycle 3


I enjoy the last few days of a chemotherapy cycle - most side effects are either minimal or gone.

This weekend, for instance, my family and I were able to drive north to a family reunion. That's over 2 hours driving either way, plus the reunion itself - add another 5 hours. But I made it with only a 20-minute nap at the home of our host. More importantly, I was able to drink the refreshingly cold drinks, eat most of the food offered, and otherwise enjoy the event as if I wasn't being treated for cancer.

This week, the cycle begins again. Today, it's blood work and another consultation with a medical oncologist to see how I'm doing and what the blood tests report about my overall health.

I've found that most medical oncologists don't automatically provide details about the blood work. You have to ask specifically and assertively for each measure. Even then, the doctors appear curious that a patient would have an interest in things like white blood count, hemoglobin, platelets, absolute neutraphil count, and neutraphils. True, I might be in a minority, but I'll bet there are a lot of people being treated who would find the overall trends of those measures of at least passing interest.

In my own case, the blood counts tell a story which is sometimes at odd with my overall sense of well being. If I look at the trends from January 9th (when my combination chemoradiation therapy began) to today, the story is very clear. I am far less robust and far more vulnerable to infection than when I began.

This was brought home to me in the last chemotherapy session when I was able to compare my counts with a person in a nearby recliner receiving her first treatment. Even though she was a good 20 years my senior, her white blood cell count, hemoglobin, etc was far better than my own.

I realize that the medical oncologist will declare a treatment holiday if my counts get too low. Since I haven't had any holiday, they must all be high enough. Still, those low values are something of which I must remain conscious, especially when I want to be with crowds celebrating something like, oh, say, the World Cup win by Italy. Now that kind of decision would be foolhardy.

****

I've just returned from my consultation with yet another medical oncologist. My counts are all better this week! In fact, I'm doing so well that the oncologist doesn't think I need to see her again for another month.

On the other hand, as I described the neuropathy (tingling in the finger tips and sensitivity to cold) and fatigue I experienced after the last treatment, she indicated that I'm a textbook case. What's worse is that these two side effects are cumulative throughout the entire chemotherapy treatment cycle. The neuropathy is even worse. It tends to hang on for weeks, sometimes months, after treatment is finished.

She also indicated that as the fatigue and neuropathy accumulate, we may need to reduce dosages. For this we just wait and see. In the meantime, I should just continue doing what I'm doing, making sure that I have at least 2 or 3 days after each treatment cycle to do nothing except sleep, nap, and take it easy. I think I can do that!
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Friday, July 07, 2006

An Unwanted Journey: Day 0227 - Treatment Photos

Below are a few photographs of stages of my cancer treatment. There are three stages - radiation, surgery, and chemotherapy. If you would like to see a few comments on each photograph, then simply click on the photo and you will be taken to Flickr, the host for this set of photographs. Each photograph has a title which indicates the date and subject, as well as a comment describing the context for the picture.

20060209Don_GRRCCRadiationDay


20060209DonRadiationGown

20060214DonRadiation01

20060214DonRadiation02

20060216DonRadiationTechs

20060916RadiationGraduation

20060217LashaCCACDon01

20060429DonGRH

20060505DonLeavingGRH

Thursday, July 06, 2006

An Unwanted Journey: Day 0226 - Leroy's Courage


"It takes courage to get through life. The courage of doctors and nurses who can work magic with their hands, the courage of those keeping a lonely vigil at the bedside of a loved one. The courage of the ill, fighting with everything they have, not just to cheat death, but to live."

- Leroy Sievers, My Cancer, Commentary: Funny the Things You Think About (February 16, 2006)

I've started subscribing to RSS feeds from my fellow travelers. The quotation above is from the very first entry I collected in my Newsgator for Outlook newly created folder, Cancer Blogs. If this commentary from Leroy is an indication of what I've been missing by avoiding blogs from other cancer fighters, then I can hardly wait to see what's in store.

Leroy talks about courage, about fighting, about cancer touching each and every one of us whether or not we have been diagnosed with cancer, about bearing the burdens thrust upon us by life, and how we are only given what we can truly bear.

Even more importantly, Leroy reminds us that the courage we discover inside ourselves as we deal with our own diagnosis must never eclipse the recognition of the courage of others affected by our personal battle.

This, too, is probably one of my blinds spots. Consumed by my own pain, weakness, insecurity, uncertainty and doubt, it has been all too easy to forget what this diagnosis has done to so many others who care for me. My wife, my sons, my mother and father, my brothers and sister, my aunts and uncles, my friends, and even my acquaintances - my diagnosis has required that they too face their own mortality. It has required that they reconsider life's priorities - either that or collapse into ignorance and neglect. It has required that they think, at least once in a while, about loss and fear, about guilt and blame, and the frailty of the human condition.

Then there are the doctors, nurses, hospital workers, patients and all others involved in the health care system. They have had to muster courage when dealing with me. One nurse especially comes to mind. I'll never forget her kindness and calm demeanour when I panicked in the hospital the day when I "bled out" while on blood thinners. Never having experienced anything like that before, I was almost out of control in fear. She helped me clean up, get back to bed, calm down and realize that what I had just experienced was something they could handle and that even I could face with more courage than I had thus far demonstrated.

So, Leroy, thank you for reminding me about courage - my own and that of those who care for me.

And finally, farewell to Hilde, who, after 10 years of facing cancer down with a courage I can only hope to emulate, said a final goodbye to her family and friends last Thursday.

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Wednesday, July 05, 2006

An Unwanted Journey: Day 0225 - Fellow Travellers


One resource I haven't availed myself of yet is other cancer patient blogs. As I near the end of my treatment, I hope to change this, to become less concerned with my own journey and more aware of how I share a path with many others.

Thus far, I have focused on how cancer has threatened me personally, how it has dealt me a body blow (literally), and yet coincidentally opened up vistas of meaning and hope that I never would have anticipated. While it is true that blogging about my battle with cancer has given me the chance to communicate with many people with whom I never otherwise would have had extensive conversations, I have been negligent in returning the favour. Gradually, I will remedy that.

Here are just a few fellow travellers with much wisdom to share:

Chronicles of a Cancer Survivor: David J. Hahn, pianist and cancer blogger. David, I wish I could join you on those bicycle journeys. But rectal cancer means bicycling is just about the most uncomfortable of exercise options available to me. Keep goin' rookie.

My Private Casbah: Bint Alshamsa, a gifted writer, biology student, and survivor extraordinaire. Not all her entries relate to cancer, but those that do are well worth the effort of finding and consuming.

My Cancer: Leroy Sievers, a commentator with NPR and podcaster with many awards to his credit, including 12 Emmys.

truesurvivor: Katie Paine, a serial entrepreneur, someone Shel Israel mentioned to me (Shel is a co-author of Naked Conversations). Katie, thanks for visiting An Unwanted Journey. I hope to order Sweet Scoops yogurt as soon as possible. Chemotherapy has left me unable to eat ice cream, so I'm hoping your recommendation fills the gap nicely.

And finally, from the treatment side,

The Cheerful Oncologist: Craig Hildreth, M.D., medical oncologist and someone who knows that Sibelius rocks.

Visit these folks, share a comment with them, and be enriched.

Speaking of being enriched, I can't emphasize enough just how much blogging has enriched my own life. It has also allowed me to peek in on others. My niece is a perfect example. Her blog has opened her life to her family and friends. She shares random and not-so-random thoughts about parenting, about the joys of reading, the world of writing and the visual arts, and she's not a bad photographer too! Check her out at http://www.edeva.ca.
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Tuesday, July 04, 2006

An Unwanted Journey: Day 0223 - Frequent Fatigue


Fatigue has been the side-effect of note since my second chemotherapy treatment last Wednesday. No serious nausea, just naps, lots and lots of naps. Oh, yeah. And the sensitivity to cold, tingling sensations in the fingertips, constriction of the mouth and throat when exposed to cold food - all that too.

I'm not really complaining - OK, just a bit. It's better than vomiting, to be sure. But last time, after the first chemotherapy treatment, I had one day of slight nausea on the Saturday. This time, it's Tuesday morning, and I've been sleeping since Saturday...on and off, to be sure, but the naps are so frequent as to become a source of some good-natured teasing at home. "Where's Dad?" "Check the recliner...check the bedroom."

I also miss my ice cream. Yesterday, it was hot and humid. For the first time in three days, I actually ventured outdoors to take my wife and youngest son to Dairy Queen. I ordered a Blizzard and then remembered that my sensitivity to cold food might still be affecting me. Sure enough, the first taste elicited that familiar and unpleasant tingling sensation in the mouth and throat. But I was determined to enjoy an ice cream treat. It took about 45 minutes of gingerly tasting and letting the thing melt, but eventually I got through it. Afterwards, I realized that there wasn't much enjoyment to be had, just stubborn determination.

This week, after having been so pleased with putting in more hours for my place of employment, I may find myself backsliding a bit simply because of fatigue levels. FIFA semi-finals will have absolutely nothing to do with it! Nor will Wimbleton, nor the Tour de France! But I'll do what I can. At the very least, I feel as though I'm back in the saddle somewhat, even though my ass hurts.
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Thursday, June 29, 2006

An Unwanted Journey: Day 0218 - Chemotherapy Continues


I continue to feel better daily. I am working more hours telecommuting and being on-site at my place of employment. Even more importantly, I have the sensation that my mental acuity is good and my ability to contribute is excellent. Still, my blood counts tells a sobering story.

This week I had my second chemotherapy treatment, so it was natural for me to be curious about my blood counts. Hemoglobin, platelets, white blood count, and absolute neutraphil counts were all disappointing. Which means no matter how well I might be feeling these days, I am vulnerable to infection, more so now that at any other point in my treatment during 2006.

Yesterday I made a foolhardy decision to test one of the predictable side effects of the oxaliplatin treatment, namely sensitivity to cold. I took a bite of an ice cream sandwich and immediately sensed a constriction of the throat as well as unpleasant tingling sensations throughout the mouth. Even a drink of cold water brought on the same sensations.

The same happened today after purchasing a bottle of water. Sips would initiate that same sensation. But, in addition, I began suffering neuropathy side effects, especially tingling in the finger tips. Even pushing numbers on a telephone keypad would result in low-level pain. But it wasn't too bad and I was able to catch up on all my business voice mail messages while on-site at work in the morning. I just had to let the water warm up before consuming it.

These are all lessons in managing side effects, lessons which again bring home the truism that my body is like most others. I am subject to basic biological processes well documented and predictable, so that no matter how unique I might feel, I will react like most others to the drugs I am consuming.

Saturday is the day I believe the nausea side effects will hit me. But I'm prepared now and feeling quite optimistic.

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Saturday, June 24, 2006

An Unwanted Journey: Day 0213 - Signature Strengths




When dealing with a diagnosis of cancer, there can be little doubt that boosting one's self-esteem, sense of control, and overall optimism are useful objectives, whether or not those cognitive adaptations are positively distorted or not. Sure, there are occasions when the distortion might be counter-productive, such as when the patient decides that further medical interventions are not warranted simply because of a high level of optimism about overall outcomes. But generally speaking, having positive emotions about one's current and future health (distorted or not) is worthwhile.

But in addition to positive feelings or emotions, Martin Seligman argues that overall happiness or well-being can be the product of character strengths and personality traits. Specifically, the benefits arise from living the virtuous life, despite the ongoing battle with cancer or other chronic disease.

Each of us, he argues, have a set of signature strengths, which are ubiquitous in all human cultures and periods. By exercising these strengths daily, we become more virtuous. By becoming more virtuous, our overall well-being is enhanced.

Here's an example. Very, very early this morning, as I waited for my eldest son to get home from a party with friends, I took the AuthenticHappiness.org site's VIA Strength test in order to discover my personal signature strengths and the virtues they support. The results, in descending order, were as follows (strength followed by the virtue it supports):

1. Love of learning (wisdom and knowledge)
2. Creativity, ingenuity, and originality (wisdom and knowledge)
3. Bravery and valor (courage)
4. Citizenship, teamwork, and loyalty (justice)
5. Curiosity and interest in the world (wisdom and knowledge)

The VIA stands for values in action. Whatever the accuracy of the test, I sense a resonance with the results. Exercising these strengths on a daily basis should help me live a more virtuous life, something which doesn't guarantee experiencing positive emotions. Instead, it puts me into a state in which emotions are largely irrelevant. Time disappears as I get lost in the flow.

Thus far, I've only taken the test. Now my goal is to see what really happens with daily exercise of my signature strengths. Will I see results that improve my odds in battling cancer? I don't know, but obviously, it cannot hurt.
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Thursday, June 22, 2006

An Unwanted Journey: Day 0211 - Cognitive Adaptation


May we continue reflecting on optimism and cancer for just a little longer?

It wouldn't take a genius to infer that I like to read thematically, picking up one book or article and then searching for similar material to corroborate or challenge the thesis of the original. I also like to "write down" my thoughts in a blog format (or other) while they are current, not just to communicate with others, but to organize and articulate my own germinating thoughts arising from the seeds of my reading.

And so it is with optimism and cancer. I am still reading Seligman's Authentic Happiness, but I am concurrently reading another book by another psychologist, Daniel Gilbert, on happiness called Stumbling on Happiness. The latter made reference to an essay, a copy of which I found online, called Cognitive adaptation: a comparision of cancer patients and healthy references.

The theory of cognitive adaptation suggests that people hold unrealistic positive views of themselves in order to feel better about themselves. For cancer patients, diagnosis threatens optimism, control, and self-esteem. And the sun rises in the east and sets in the west - somewhat obvious, right?

But what is not so intuitive is that cancer patients, when compared with a healthy control group, hold distorted views as positive as those in the control group along all three dimensions (optimism, control, self-esteem). Even when facts intrude to challenge (side effects continuing, for instance), positive cognitive adaptations continue for cancer patients.

The study took a longitudinal approach (examining all three variables over time using specific assessment points). At each assessment, cancer patients had significantly higher optimism and self-esteem than the healthy control group. Control did not differ significantly between both groups.

So what does this mean? For one thing, I am not alone. We cancer patients, it seems, tend to use both our diagnosis and treatment as a lever to ratchet up our overall sense of optimism and self-esteem not just over time but above and beyond the levels of the general population.

How can that be? One possibility is that we tend to compare ourselves with those even less fortunate than we are. One other possibility is that the studies of cancer patients thus far have only included patients with a relatively good prognosis and did not extend in time beyond three months after the end of treatment. Yet another is that we don't yet know whether all cancer patients cognitively adapt (depending on tumour site, stage, etc). Perhaps it is only specific types of cancer and stages that result in so positive adaptations.
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Tuesday, June 20, 2006

An Unwanted Journey: Day 0209 - Optimism and Feeling Down


Is it OK if I feel sorry for myself once in a while?

This morning, I got up early to drive my son to work for 6:00 am (he really doesn't like going to work so early) and quickly realized that my sleep had been so disruptive that I already felt exhausted. My bottom was sore from all the bowel movements in the middle of the night and I was moving about like I was a centenarian.

My wife asked how I was feeling. At the time, I was thinking about the gratitude project, realizing I had forgotton to make the diary entry for the day before. I admitted I was feeling down, but then challenged myself saying, "I really have so much to be thankful for." But as I did so, I felt tears of self-pity rolling down my cheeks.

Those moments don't occur as much these days, but I'd be a liar if I didn't admit that sometimes I am just tired of being tired and sick of being sick. As it is, today hasn't been half bad. I got a good start on handling the 1800 corporate email messages waiting for me (I have approval now to put in a few hours of telecommuting for work). I was able to respond to a few of those messages and begin thinking about corporate IT priorities again.

Today I also completed the optimism test at the http://www.authentichappiness.org site. The results were interesting.

Optimistic people tend to think good events will be permanent. In that area, I'm average. Optimistic people also tend to believe bad events are not permanent, but temporary. In that area, I am very optimistic. Optimistic people believe good events are pervasive throughout all areas in their lives. On that scale, I am moderately pessimistic. Optimistic people believe bad events are not pervasive throughout other areas in their lives. On that scale, I am moderately optimistic. And finally, optimistic people are hopeful in general. Here I am clearly average.

I don't know whether those results make me an optimist or a pessimist, but it is probably not as important to answer that question as it is to realize how I think about permanence and pervasiveness.

Perhaps taking the test answers my question above. Yes, it is OK to feel sorry for myself occasionally. Hey, it's going to happen whether I want it to or not! But I already know that those feelings won't last. On the other hand, my realism (I prefer calling it that rather than pessimism) about the permanence of good events is very useful for me as an IT manager, as a father of teenage boys, as a software application developer - this may be a very useful feature of my personality. We'll see.

So today I have felt both sorry for myself and pleased with myself. Not a bad day, I guess.

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Sunday, June 18, 2006

An Unwanted Journey: Day 0207 - Nausea


Saturday saw my first experience with chemotherapy-induced nausea. It wasn't too bad and I took my anti-nausea drugs as recommended. But, it did lay me low enough that I had to sleep almost all day and night. I also had no appetite whatsoever, something reflected on the scales this morning.

Thank goodness for the US Open and the FIFA world cup games. When I was awake, I could catch a little from my vantage point in the recliner in the family room. Unfortunately, I was too tired to catch the 4-0 romp of the Edmonton Oilers over the Caroline Hurricane at night. There really is so little on TV that I am grateful for the sporting events.

Today is Father's Day and I am feeling much better. The heat and humidity are tough, though. My wife and I went for an abbreviated walk this afternoon, but I was amazed at how little resilience I had after a day of resting. It will take time for me to build up a reservoir of strength and endurance.
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Friday, June 16, 2006

An Unwanted Journey: Day 0205 - Gratitude Project



A dear and long-time friend called today just to see how I was doing. We talked about my progress in recovering from post-operative complications, about beginning my chemotherapy, about diet and nutrition (John, you're a veritable alternative pharmacist!), and even a bit about emotional health, optimism, etc.

We are also planning some outings together for hikes along the Bruce Trail. I had to explain that walking is just about all I can do for physical exercise during the next few months. But there are areas on the Bruce Trail that are easier than others, so we'll start easy and see what we can do about more challenging trails after I've completed chemotherapy.

I told John about my most recent reading material. I downloaded Martin Seligman's Authentic Happiness and have visited his University of Pennsylvania's Positive Psychology web site several times.

Tonight I was reading his chapter on Satisfaction about the Past. One of the exercises he recommends for those challenged with negative thoughts about their past is a 20-day diary in which you look back over the past 24 hours and list 5 things about your life for which you are grateful. The trick is to take 2 online tests first and then repeat those same tests at the end of the 20 days. The itemizing of things for which one is grateful doesn't take very long, so he has found that many people continue to do the exercise long after the 20 days has expired.

I did the Satisfaction with Life Scale test and the General Happiness Scale test and recorded my results (you need to register on the site to keep an online record of your results, complete with statistics showing breakdowns by gender, age, education level, occupation, and geography).

I then completed the gratitude exercise. Even a single diary entry was instructive. It was so easy to find 5 things for which I am grateful. But the interesting thing is that I don't generally focus on such things during a typical day. Part of that may be because I have felt somewhat betrayed by my illness for the past few months. That's natural, but it is more likely that I have a typically negative way of thinking about past experiences that prejudices deriving positive emotions from those reflections.

Seligman himself tends to inhabit the pessimistic half of the scale, but he employs his own exercises to push his thinking towards more optimistic and rewarding emotions. The gratitude exercise is a simple, effective way to begin re-evaluating and actually creating positive emotions from past life experiences.

One of the things I most appreciate about Seligman's writing is that he doesn't just offer simple self-help exercises and pop-psychology maxims. He places his recommendations within the context of solid research and historical context.

For instance, in the chapter I was reading tonight, he examined the influence of Darwin, Marx, and Freud as well as the Freudian, behaviourist and cognitive psychology movements in which his positive psychology research is situated. When I have those larger contextual outlines in place, I am far more likely to be movitated to involve myself in the exercises recommended. But it also helps to have friends like John who remind me that there is more to battling cancer that treatment, food, and exercise. How we think matters too.
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Thursday, June 15, 2006

An Unwanted Journey: Day 0204 - Chemotherapy Underway


Wednesday, I spent most of the day at the chemotherapy suite at the Grand River Regional Cancer Centre with my wife and a variety of nurses, pharmacists and dieticians. In addition, a friendly orderly kept my up to date on the FIFA World Cup scores as I sat in the recliner receiving my various infusions. Thanks, Dave!

Nothing stands still in the world of chemotherapy. Although my itinerary didn't have a reference to this appointment, the oncology team has added a new infusion of magnesium sulphate and calcium gluconate before the infusion of cancer drugs. This infusion lasts for about an hour and is simply a quick way of getting those minerals into the body. My magnesium and calcium blood levels were good anyway, but the infusion is preventative.

Evidently, researchers have discovered that those minerals enhance the action of drugs like oxaliplatin and 5-fluorouracil in binding with target cancer cells (assuming there are any left in my body - I have to hope that micrometastases don't exist and that everything we're doing right now is strictly speaking unnecessary). Specifically, the minerals help prevent oxaliplatin-related peripheral neuropathy, a side effect which causes tingling sensations in the extremities, including sensitivity to cold and muscle weakness. The effect is cumulative with the FOLFOX protocol, meaning it will get worse during the 8 weeks I receive treatment. Untreated, I could expect problems that could make keyboard use difficult at best. As it is, I have been advised to avoid opening and removing cold items from the refrigerator on the day of treatment. So much for the ice cream sandwich!

After that infusion we started a 2-hour infusion of leucovorin (actually a folic acid vitamin supplement) and oxaliplatin. Prior to doing so, I had to take preventative anti-nausea medication (more on this later in this post) - 3 x 8 mg tablets of zofran and 1 x 4mg tablet of dexamethasone.

Shortly afterwards, as my wife and I sat in the chemotherapy suite, a pharmacist came to talk to us about the treatment protocol, about possible drug interactions, about the anti-nausea medications, and - the big one - possible side effects of both the anti-nausea medications and the chemo drugs. After the 2-hour infusion, another nurse changed the PICC line dressing, implemented a push injection through the PICC line of 5-FU and then connected me to the baby bottle of 5-FU which I will carry with me for the next 46 hours. A CCAC nurse will then visit me at home to disconnect the bottle (I'll be responsible for returning the bottle to the GRRCC chemotherapy suite for proper disposal since it is a biohazard).

One interesting aspect of the 5-FU infusion is that I will be getting exactly the same dosage as I did when I had that drug in Stage 1 when it acted as a radiation sensitizer. But instead of getting that dosage in 2 stages over 2 weeks, the dosage is collapsed and accelerated from 2 weeks to 2 days. No wonder the cancer centre staff are so diligent about educating patients on possible side effects!

One advantage of being under the care of CCAC nurses is that medication prescribed by the oncologists is completely covered by the CCAC during the time period in which they provide home care. We discovered today with the Zofran just how much of an economic advantage that is (we had already seen a tremendous advantage with Flomax and Pariet). Four pills cost over $90!

The anti-nause (anti-emetics) medication has a very specific and detailed schedule. The pharmacist at the GRRCC explained it all to my wife and me and provided us with a colour-coded calendar showing precisely when and how many tablets I have to take. Thank goodness I have a pocket PC, alarms on my watch, and a good notebook computer to help me remember all the medications and how and when the drugs should be administered.

I know. Too much detail in this post. But perhaps someone else undergoing chemotherapy for colorectal cancer can benefit from the information. In addition, I can always come back for reference purposes.
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Tuesday, June 13, 2006

An Unwanted Journey: Day 0202 - PICC Reminders


It's disconcerting to realize how poor my memory can be. Despite having 5 1/2 weeks with a PICC line in January and February for the neoadjuvant combination chemoradiation therapy (Stage 1), I had completely forgotten the limitations it imposes on one's lifestyle. No weight training; no lifting or stretching of any significant proportions; no aerobics; very limited household and outdoor activities; no swimming. And this time, I have to manage 4 months instead of 5 1/2 weeks.

I had also conveniently forgotten how careful my family will have to be. More handwashing, more sanitizing of surfaces in the kitchen and washrooms, daily use of antimicrobial soaps when I have to flush the PICC line, regular use of anti-nausea medications (different ones depending on whether I am going to the cancer centre for an infusion or merely at home or work), scheduling of activities according to when CCAC nurses need to change my dressing or disconnect the 5-FU bottle.

But the nurses have reminded me of all that information. Even more immediately, there is the PICC line itself, the soreness in my left arm, the "sock" covering the line like some kind of weird fashion statement, and soon the bottle of 5-FU that I'll carry with me for 46 hours every 2 weeks...all that screams "Don't forget that your life is still anything but normal!"

Still, like they say, every day above ground is a good day! If I can get out walking further and faster every day, while minimizing side effects, my fitness (what's left of it!) shouldn't deteriorate any further. And there is the whole emotional/social/spiritual side to train and develop. Not to mention work. I really hope I can start back part-time within a couple of weeks, gradually working up to a full-time return while still on chemo.

First, though, there is tomorrow and my first ever FOLFOX treatment, the first of 8 treatments, once every 2 weeks. My wife will join me for the afternoon at the cancer centre so we both can receive the pharmacy training and see exactly how it's to be done.

I need to remind myself of many things it seems, the good, the bad, the eternal, and the annoying.

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Monday, June 12, 2006

An Unwanted Journey: Day 0201 - Ready for Stage Three


My health is improving.

Even though my surgeon would still like to see the number of bowel movements decrease (as would I), he has approved proceeding with chemotherapy. So, this week I will be getting my PICC line in place for the next 4 months and will have my first infusion of 5-fluorouracil, leucovorin, and oxaliplatin . By next weekend, I should have first-hand experience of any side effects to be expected with my new regimen.

Today (Monday), I met with yet another medical oncologist for an assessment before beginning chemotherapy. For me it was another exercise in rehearsing my treatment story for someone unfamiliar with the details. It was also exposure to yet another "bedside" manner from both the oncologist and the nurse.

Unfortunately, neither one left me feeling particularly enthusiastic about the course of chemotherapy. Because I am well beyond the recommended 6 weeks from surgery to commencement of chemotherapy, the oncologist informed me that there is statistically little to recommend taking the therapy at all. If I had started "on time", the therapy's influence on a cure would only have been 10-15% anyway, but since I am beyond 10 weeks, we should realistically cut even that low rate in half.

Naturally, I asked whether it is even worthwhile to bother since the costs of treatment seem to outweigh the potential benefit. Since the course of therapy was recommended by another oncologist, the "substitute" oncologist suggested that we should go ahead, despite the statistically low rate of return.

Then, after the oncologist had left, the nurse decided to tell me that patients who have experienced gastrointestinal tract cancers should really think of their disease as chronic. In other words, I guess, don't expect a once-and-for-all cure! Why tell me something like that just before I'm about to embark on a course of chemotherapy? Beats me!

Still, I shall continue. Tuesday, I get my PICC line inserted. Wednesday, we start treatment. Four months later, I'm done therapy. That will leave me about 2 months before I celebrate the 1st anniversary of the diagnosis.

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Wednesday, June 07, 2006

An Unwanted Journey: Day 0196 - Urology Blessing


I had my consultation with the urologist today. He was very pleased with my progress, so pleased, in fact, that we don't have to see one another for another 6 months. This means I no longer need to measure urine output (hurrah!), I don't have to consider any further self catheterizations (unless the same obstructions occur during chemotherapy), and I can assume I have regained full neurological control of the bladder.

I will probably continue to have interrupted sleep patterns at night, however. He explained that the volume of urinary output after midnight until early morning is owing to a systemic issue. The body is emptying extra fluid from body tissues, far more than can be accounted for in fluid intake during those same hours. Because I am sick, this systemic response is even more pronounced. There won't be any relief, though, except with the passage of time. But of course chemotherapy could throw a wrench into the recovery process. Still, in his opinion, I am doing well and can expect to improve even further.

So, all that remains now is to see the surgeon again tomorrow, review how my bowel is responding to the regimen I am following, and from that determine whether or not I can begin chemotherapy next week. I am not anxious to have my body assaulted yet one more time, but it has to be done, and I would like to get it over with as soon as possible.

I also picked up the forms and physicians's reports from my general practitioner today to support my weekly indemnity payments. Reading through those reports from the cardiac care specialist and my medical oncologist was sobering. I have undoubtedly been very sick over the past couple of months. There are unanswered questions about how some of the problems I've encountered developed. But whatever the questions and uncertainties, the body has a marvellous healing potential. Despite everything, I am getting stronger and becoming more capable each day. Not strong enough or energetic enough yet to do work, but getting closer to that goal.

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Sunday, June 04, 2006

An Unwanted Journey: Day 0193 - Occupational Therapy


The CCAC nurse arranged for me to meet with an occupational therapist this week. The OT, in turn, reviewed my situation and made some suggestions for devices to ease my life. By Friday, I had those devices and was experimenting with them. There was a gell pack to put on top of a toilet seat which works extremely well. There was a toilet seat insert which adds height and comfort. It too works well. Finally, there as a wheelchair cushion which contours itself to your bottom. This hasn't been as useful, but I'll still experiment with it.

The OT was also useful in suggesting a variety of devices to assist in sleeping and in bathing. I'll wait until I have the PICC line in place before investigating those devices any further.

My wife and I were both amazed at how many resources are available when you have appropriate connections like the CCAC nurse.

I'm making slow progress on other fronts too. Yesterday I was able to walk around the block by myself and without my walking cane and was able to do so in 6 minutes faster time than in earlier walks. I'm also sleeping in a regular bed at night even though I still find myself waking every hour or so to visit the washroom. Unfortunately, in using the bed these days, I am getting tired during the NBA playoff games earlier and missing at least the second half. But I find I can usually predict the outcome from watching the first half, not always, but most of the time.

I'm driving the car more frequently these days too.

Clearly, though, I'm not doing a lot of in-depth reflection and research about cancer these days. My energies have been devoted to coping. That may come, but for now I'm content to merely feeling less discomfort and having slightly more energy for daily activities.

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