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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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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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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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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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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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.

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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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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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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