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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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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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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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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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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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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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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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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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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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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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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