An Unwanted Journey: Day 1327 – On the road again

I gave my bicycle away today. It would have been unthinkable a few years ago, unless I was feeling very generous and wanted to justify the purchase of another model during this year’s Tour de France. But today, it just made good sense…and, after all, it was a gift to my son.

Bicycling has been a significant part of my life since those days when I delivered newspapers in Barrie, Ontario – The Globe & Mail in the mornings and the Toronto Telegram in the late afternoons. As an adult I continued to ride recreationally, enjoying the solitary nature of both trail and road cycling, not to mention the toys and gadgets one could purchase. Probably my favourite add-on in recent years was my gel seat, something which helped fight the dead-tushie syndrome from riding for two or three hours on the back country roads of Waterloo Region.

Friends often warned me that my hobby could lead to prostate disease, so I made sure to get an annual rectal exam from my family physician. I’ve never had prostate cancer, but after diagnosis of colorectal cancer in November 2005, the occasional thought has crossed my mind about a correlation with that disease and the frequency with which I rode my bicycle over the years.

I don’t believe there is any correlation. In fact, in my unwanted journey with the disease, the one physical activity I thought I might take up again would be bicycle riding. But it never happened, not only because my buttocks have been the source of virtually unending discomfort and pain, but because my wife has vetoed any initiative to try it out again.

Still, the bicycle, the gadgets, the expensive bicycle stand – they’ve all remained in our garage awaiting “better days”. But now that I’m in palliative home care and my son needs inexpensive transportation, I’ve given the bicycle to him.

He seems quite keen on getting started. Today, he and my wife took the bicycle in for a recommended cleaning and tune up. He’ll be buying a helmet and gloves right away too. And then, if he’s anything like me (and he is) the gadgets will start beckoning.  In addition, he’ll be finding the best routes to take to the university in the fall, the best trails to explore, and roads which lead to simple physical bliss.

And what about me? My unwanted journey will continue without the bicycle. Next week, I’ll get the results of my CT scan and blood tests. I’ll proceed with Isaac Asimov’s Robot series after having just finished the Foundation series. I’ll receive more visitors in my home and in the backyard. I’ll get my wife to take me for car rides and maybe even a trip to a mall with the portable wheel chair. In other words, I’ll enjoy my forms of transportation – real and imagined – and watch my son’s enthusiasm for bicycling grow.

An Unwanted Journey: Day 1318 - Looking too good to be terminally ill

Some who read this blog do so because they’ve been diagnosed with colorectal cancer. In fact, at least some health care providers in the Waterloo Region habitually encourage newly diagnosed patients to read this blog. They do so both for its sometimes brutal realism, as well as for its optimism and useful  references.

I’d love sometime to get together with other patients to talk about an experience that some of us might share. That experience relates to people commenting on how well you look.

“Gee, you look really good, Don. If you hadn’t told me that you have terminal cancer, I wouldn’t know that there was anything wrong with you at all…OK, maybe that cane that you carry with you might be a clue. And you’ve lost weight. Come to think of it, you’re also looking pretty pale these days. And there are those grimaces that momentarily capture your face, and moans we occasionally hear from the main floor bathroom.”

My wife will then offer up her perspective.

“You know, as soon as you leave today, Don will probably have an extended nap to recoup energy. And if you were here in the evenings and night, you would see those times when the pain level is far higher than it is at this moment. You’d also see how difficult it’s been for Don and his medical team to balance the pain medications to make his life bearable and to avoid delusions. In fact, almost nobody thought Don would make it beyond Christmas last year. From my perspective, it’s almost miraculous that he’s still here entertaining visitors.”

The common wisdom is sometimes stated as follows:

“If you feel good, then you are good.”

“If you look good, then you are good.”

My response tends to vacillate between some variant of common wisdom and a more scientific perspective. Science, for instance, offers us ways to extend our senses, to take measurements and devise statistics that are more finely tuned than the rather crude “feeling good” and “looking good”.

Common wisdom is where I go when I’m overwhelmed with all the statistics. When I can understand the measurements and statistics, then I put common wisdom back in the tool bag for another time.

What does it matter?

With most people, it really doesn’t matter how well you feel or how good you look. But with people who really care for you or whose care giving requires specialized knowledge and measurements, then it can be frustrating communicating with them when you sense that they don’t have the complete picture.

On an emotional level, if a family member tends to discount your concerns because you simply look good at the time they are with you, then you have to deal with the frustration and determine whether or not to risk telling them that they just don’t get it. With concerns you might have with health care providers, it’s much easier; you simply insist that they get the big picture one way or the other before they start a procedure or ask you to follow a new routine.

What to do?

I’d like to hear from some of you about how you’ve resolved the emotional frustration of dealing with people who you sense don’t understand the seriousness of your medical condition. Sometimes, perhaps, it’s the other direction. You mention cancer and they have you already in the grave. But most of the time, the frustration is in sensing that the other person doesn’t get how sick you really are.

Having said all that about emotional frustrations and difficulties in communicating, I have to admit that my overall journey has been remarkably positive. I’ve seen people open up and share difficult topics with me – difficult for both of us. I’ve seen people struggle with how much or how little to say, with the overall result being an extension of healing in both directions. I’ve sometimes had to switch roles from patient to psychological counsellor, again with generally very positive consequences. Like so many other important relationships, my unwanted journey has revealed opportunities for growth and enrichment.

An Unwanted Journey: Day 1310 – Kudos to our team

I am really impressed with the palliative care / home hospice services offered through the Grand River Regional Cancer Centre.

Sure, the bad news is that cancer is going to eventually get me – maybe directly, maybe by something like a heart attack, a pulmonary embolism, or liver failure. But everyone has to make an exit at some time. Not everyone gets to prepare so completely for their death. Nor does everyone get exposed to the full range of services offered through the provincial/regional cancer care organizations.

I hear, from very good sources, that the Waterloo regional cancer care, especially the palliative care services, are among the best anywhere in the province. In addition to such testimonials is my own experience. Here’s is a recent one that demonstrates how it works here in the region.

Last Thursday, we were visited by the coordinator for Paramed (the specific organization providing in-home nursing services) and the nurse practitioner working with the doctors providing overall medical care for hospice/palliative patients. During that meeting, as they heard me talking about my personal need for more information about the progress of the disease, they decided to ask for a CT scan. Those CT scan images should tell us how quickly the liver lesions are growing. They might also show if there is any significant fluid build up in the abdominal cavity.

Evidently most patients are content with knowing the bare minimum about the progression of their disease. I’m not satisfied with simply receiving symptom relief. My visitors that day recognized that emotional need and adapted the care I was receiving to accommodate my need for information.

Then Friday I came down with what appeared to be stomach flu symptoms. By Friday night I was feeling nauseous and actually vomited for the first time since beginning to receive cancer care, including radiation and chemotherapy. Saturday and Sunday, my appetite disappeared completely. By Sunday night, even though my body temperature was normal, I became increasingly anxious. I was short of breath, had heart burn, had hot/cold feelings switching in a matter of a few moments; then I started to sweat, followed by even more anxiety.

We decided to call Paramed to get some nursing consultation since I wasn’t scheduled for another in-home visit until the next Tuesday. We got a call back within about 15 minutes with my wife explaining my situation to a nurse who knows my situation and care very well. She explained all the possible causes, including a mild heart attack, acid reflux, progression of the disease which might be pushing organs up through the diaphragm, or an anxiety attack. She also went on to talk about what to expect should I go to the hospital worried about the possibility of a mild heart attack, talking about the DNR I have already signed (Do Not Resuscitate). Upon her advice I took some more pain medication and some additional anxiety medication and tried my best to get some sleep.

Sunday night was very tough, especially as I considered the prospect of my death being far more imminent that I had anticipated.

Monday morning, a Paramed nurse (the same nurse we had consulted the night before) came and took my vitals, reassuring me that my blood pressure and heart rate were all normal, making the heart attack possibility unlikely.

Later in the day, the palliative care doctor caring for me came for a visit to discuss everything that had happened over the past week or so. He also gave me a thorough physical exam. He confirmed that a CT scan would be scheduled along with complete blood work. He suspected, given the many variables, that I had suffered through a viral infection.

Sure enough, after that visit, the heart burn started to recede, my appetite started to reappear, bowel movements began again, and I found myself sitting outside with my family in the cool of the evening while they ate supper and I nibbled on some crackers.

Clearly, anxiety is an insidious thing, making difficult circumstances worse than they truly are. But my care givers, including my wife, responded quickly and appropriately allowing me to recover my bearings and achieve some balance.

Whatever the news I’ll get from the blood profile and the CT scan (scheduled for Thursday, July 9th), my health care team deserves high praise.

An Unwanted Journey: Day 1306 – Uncertainty and Humility

My wife went to a retirement party recently. Before leaving, she asked me, “What do I say when people ask me how you’re doing? Just the standard, ‘We’re taking it a day at a time. One day he’s doing reasonably well, the next he’s bedridden and in a lot of pain and sleeping whenever possible.’”?

She returned from the party pleased with seeing old friends and colleagues. Evidently, a lot of people asked about me and about how she was handling the daily care-giving responsibilities. This blog is a handy resource for answers to questions about how I’m dealing with cancer, but there isn’t anything here illuminating the care giver’s experience. About all I can offer is a platitude that it takes a strong and confident partnership to make cancer care work and a marriage healthy.

These are uncertain days. As I’ve said before, being on palliative home care means that there are no regular CT scans or MRIs or even complete blood work profiles, CEA measures and so on. There are regular visits from the palliative care doctor from the Grand River Regional Cancer Centre every two weeks or so, and even more frequent visits from nurses. But apart from symptoms like pain, appetite, bowel movement frequency and characteristics, voiding profiles, fatigue and drowsiness, nausea, loss of breath, etc (all part of the standard Edmonton Symptom Assessment System – ESAS), I really have little objective information about how the disease is progressing.

It actually takes a lot of humility to accept the status quo. If you, like me, prefer more information, then hospice care can be frustrating. At its most basic, home hospice care is about keeping the patient as comfortable as possible until he/she dies. The professional care givers can’t answer questions about how the disease is progressing apart from the fairly obvious.

I’ve asked for special treatment because I thrive on knowing as much as possible about the progress of the disease. I’ve asked for a CT scan to tell us whether the liver lesions are growing, how fast they are growing, and whether those other lesions in the abdominal cavity are getting large enough to be seen on the scan images.

Visitors, whether nursing staff or simply family and friends, continue to tell me that I’m looking good, surprisingly so. As it is, I’ve survived far longer than even the palliative care doctor would have expected when he first started visiting me in November 2008. My wife and I continue making a good team. We’re really good at this!

So whatever the CT scans have to tell me, I’m happier today realizing that I’m going to have some objective markers soon to answer the continuing question, “How are you doing?”

An Unwanted Journey: Day 1286 – Sci-Fi Dreaming

May 2009 has been a month of pain and milestones.

Although neither I nor my hospice medical team have isolated the cause for the increased pain, we’ve made some progress on dealing with the symptoms. I’ve increased my use of dilaudid for occasions when I need to break through the pain, going from an optimal 2 or 3 times a day to sometimes as high as 12 pills when nothing else seems to bring relief.

It may be that I’m suffering some bursitis. One way to treat that is to use some anti-inflammatory medication. But because of the side effects of doing so (bleeding from gastric ulcers being the most worrisome possibility), we’ve left that as a last resort. Instead we’ve increased my gabapentin by a single caplet late at night before going to sleep. That has meant increased nightmares, some mental confusion, a lot more muscle twitching, and increased fatigue.

To give an example of fatigue, I regularly get up at 8:00 am for medication and breakfast. Afterwards, I tend to go back to sleep until fairly late in the morning. The rest of the day I tend to snooze unless there is something to focus on such as a book I’m reading, watching the NBA play off action, or talking with members of my family. I have not visited with friends or colleagues much at all in May.

Fatigue is insidious. The worst part is that when you’re not sleeping or snoozing, you feel like you’re watching your life rather than actively participating. If you add increased pain, fear of bowel incontinence, muscle twitching, and occasional mental confusion, then it’s obvious why I haven’t been out of the house much at all for this month.

On the other hand, I have enjoyed reaching several important milestones this month – our 36th wedding anniversary, my wife’s birthday, Mother’s Day, and my own 56th birthday. In another week, we’ll be celebrating my eldest son’s 22nd birthday. So despite the challenges, I am grateful not only to have been here for those milestones, but to have been in reasonably good shape, well enough to have thoroughly enjoyed the limited celebrations for each.

Reading has been and continues to be something which I can do, stealing time when in the washroom, when I’m well enough to sit outside in a well padded chair, or when TV is too dull or an NBA playoff game outcome is obvious. 

During May, I’ve dedicated my reading to science fiction, especially the works of Robert J. Sawyer. I borrowed the Quintaglio Ascension trilogy from the Kitchener Public Library and received 4 more Sawyer books for my birthday, having just completed reading 2 of them already since the 20th of May (Mindscan and Rollback). I also purchased and read his most recent book Wake and have just started reading Flashforward. Identity Theft will follow soon.

With the release of Star Trek in theatres this month, I’ve reflected on why I am such a sci-fi fan, especially of the Star Trek movies and television series (not so much the universe of books). To put it simply, Star Trek assumes an optimistic view of the future. So too does the work of Robert J. Sawyer.

As I approach the end of my life, optimism about the future, about the survival of humanity despite technology to destroy ourselves, about a world where cancer can be beaten … all these things bring me comfort. I wish the technology was available now to allow me to survive. But someday it will be available, perhaps even during my sons’ lifetime.

An Unwanted Journey: Day 1259 – Frightened and Fascinated

It’s a phrase I heard this week on CBC Radio One’s The Current. They were discussing the so-called “narrative arc” of the world’s most recent health scare, the swine flu, just upgraded by the World Health Organization to a level 5 on a scale of 6 (see the CBC article here). For the narrative to work according to expectation, there must be a moment when the reader or viewer is confronted with an ambivalent feeling of being both frightened and fascinated.

The narrative arc of my own unwanted journey has delivered fear and fascination repeatedly. Given the anatomy of colorectal cancer, maybe it’s more accurate to speak of a narrative arse. That’s an approach used to good effect by Neil Crone and others responsible for the 5th annual Crack a Smile Comedy Night to benefit the Colorectal Cancer Association of Canada. Like anyone else who enjoys laughter as the world’s best medicine, I’m more than happy to set aside discussions of the life-threatening nature of the disease, and to step away, even if only momentarily, from my terminal condition prognosis.

But eventually, one must return inevitably to the frightened and fascinated person dealing with this particular narrative arc. Again, because palliative home hospice care doesn’t have much to do with medical technology, I don’t have CT scans and MRI images to consult telling me that the liver lesions are growing or diminishing. I don’t have regular CEA blood tests indicating the changes of antigens indicating the progress of cancer in the body. All I have to go on is how I feel.

In other words, despite my fascination and curiosity, my daily life proceeds much like anyone else’s. Like most other people, except for the prescriptions, the Monday-Wednesday-Friday nurse visits (now with the nurse calling and going through a phone triage for the swine flu scare while sitting in her car in the driveway; depending on my answers, she either comes inside or notifies medical authorities about possible flu concerns), and the visit from the hospice doctor every couple of weeks…except for those things, I’m like most other people.

That’s where the fear, depression and anxiety surface. I keep surviving – that’s the good news. This month will see a few more milestones crossed off my list, including our 36th wedding anniversary tomorrow, M’s birthday the following week, my birthday the week after that, and then my eldest son’s birthday in early June. Back in late December, thinking such thoughts was a bit of a stretch. Now, I see no reason why I will not only survive, but be doing well enough to celebrate - quietly, to be sure, but with as much gusto as I can muster.

The bad news is that I have no idea how much longer I’ll continue like this before the inevitable decline occurs.

But I fully intend to enjoy all the moments and milestones I can. I’m going to get up, do some more reading and writing, enjoy the spring weather, take some photographs, purchase Starbucks coffee, talk with friends on the phone and during visits to our home…in other words, push the worries aside as much as possible.

An Unwanted Journey: Day 1252 – Sabotage!

A prognosis of a terminal illness is sabotaged continuously. How? Well, when you take the opiate-based pain medications, you want them to work their magic. You want to be pain free. But the price you pay for being pain free is that you are participating in a disappearing act. 

“Maybe the prognosis was wrong. After all, I feel pretty good right now. If all it takes is a little fentanyl patch on my shoulder and an occasional pill, then perhaps all this talk about dying is exaggerated.”

Then, sometimes, a couple hours later, as you moan in frustration at the rapidly increasing pain in your buttocks, you get up and reach for another dilaudid.

“This really sucks! This morning I felt great. Now I feel shitty. I guess I was stupid to wonder about the accuracy of my prognosis after all.”

That’s the most common form it takes for me.

But, the conspiracy can take even more subversive forms and involve other people.

“You know how they talk about a person with cancer wasting away until they are nothing but skin and bones? Well, that’s not happening to Dad. He still has an appetite; he still gets dressed and looks good after cleaning up and shaving. He still tells jokes and is as sarcastic as anyone else in the family. Dad looks good for an old guy and is writing. It’s almost like he doesn’t even have a disease, much less something serious like cancer.”

True, the voice of a son trying to make sense of it all will naturally gravitate towards optimism, towards a wish that he desperately wants to become a reality. But when he expresses those thoughts, he is unintentionally aiding and abetting the conspiracy - “the prognosis must be inaccurate after all.”

When summarizing my condition over a few weeks or even a couple months, the pattern seems to be that there are simply good days and bad days; more specifically, days when part of the day is good and part is bad. Again, over that longer period of time, it seems that those days that I can categorize as having a “mixed” pattern are becoming more frequent.

Because of the “pattern”, I find myself entertaining visitors less frequently, often having to postpone or cancel a visit because I have become too ill or fatigued or simply unable to deal with the pain I’m experiencing to “pull it off”. I don’t trust myself as much either. That quick trip in the passenger seat to pick up a coffee at Chapters becomes a major undertaking, a calculated guess about the time required and how close I will be at any specific time to a washroom. Additionally, sometimes I will find myself with my cane walking down the driveway with a plan to walk around the block, but only having enough energy to make it a few houses down the street.

Whatever is happening, it’s becoming less predictable. Being the controlling type personality that I am, I regret and resent it. Sometimes this means that the smile on my face may be a little forced at times. The pain, unfortunately, when it makes itself known in my facial expressions…well, there’s nothing forced about that.