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Bed operator, originally uploaded by DPC Tutt.

I busted out of the hospital last night just before supper time after we got the results of the blood cultures and drain culture back. The blood cultures were clean but the drain culture showed one bug living in there that probably wouldn't be killed by the antibiotics I was taking before. So I got released with a new antibiotic to take and plans to stay off chemo for at least 2 more weeks while this infection gets under control.

While I was there I also got the results from my latest CT scan which was good! There is basically no change cancer-wise in the past 2 months. All my mets are stable and there is nothing new. The radiologist did mention that there was some inflammation along the track of my drain with associated "inflammatory infiltrates" (I think he made that phrase up) and a small pocket of air. This combined with a new bug in the drain fluid was likely the cause of my sepsis last week.

So now we wait some more for the antibiotics to do their thing. I meet with Lupichuck on September 9th and Buie on September 12th to discuss surgical options and chemotherapy plans. Until then I plan to get back to work a bit and enjoy what's left of summer, hopefully from home and not from the hospital.

Foothills ER trip

I'm back in the hospital. I came up here Friday on what I thought was just a casual visit to see if any of my doctors or nurses were around. The hope was that I would run into someone I knew, who would of course have a simple solution to my infection problem that could be put into action right away. Unfortunately it didn't quite play out that way.

Once I got here I looked around for Dr Lupichuck who was supposed to be in clinic that day. At the reception desk I was informed that she was away on holiday and both her nurses (who are familiar with my case) were also not in that day. My backup plan was to call Dr Buie's office and try to secure a render-vous with him. When I phoned his office I got the machine and left a message. I guess while I was on the phone leaving the message with Dr. Buie I was wandering around the hospital. When I hung up, I found myself standing in the waiting area for the ER. There were only a couple of people in the chairs so I thought I would just walk up the triage window and see what the wait time was. So I walked up, changed my mind on the fly, and just said I wanted to see a doctor. I got an indirect answer to the wait time issue when I was guided straight out of triage, down the hall and into bed 33 in the ER.

From there one thing let to another and I eventually saw the medical oncologist on-call. He was glad I came in and after a bit of waiting around, got me started on IV antibiotics. We talked some more and decided that I should be admitted so that I could continue the iv antibiotics for a couple of days while we waited for the results from the blood and drain cultures. I have since moved up to unit 47 (intensive palliative care) where the rooms are nice and big, there is a nice lounge, and the food is served hot from a cart, not trucked in from a Burmese hovel like the rest of the hospital.

So, it looks like I'm here for another day, then it should be home with some antibiotics and back to the regular life. There's no way I'm doing chemo this week. The prospect of having an enjoyable week is uplifting.

Infection

in·fec·tion

noun /inˈfekSHən/  infections, plural The process of infecting or the state of being infected - strict hygiene will limit the risk of infection An infectious disease - a chest infection The presence of a virus in, or its introduction into, a computer system

Signs and symptoms

• Extreme fatigue which may be ongoing for more than 2–3 months
• Continued weight loss
• Low grade or spiking fever
• Night sweats and chills
• Vague body aches and pain

I can't sleep. I remember one of the original symptoms when I first had this infection was insomnia so the fact that I'm awake at 3:45am is another sign that this stupid thing is acting up. I'm going to show up at the hospital tomorrow and see if I can beg to see my oncologist on her clinic day even though I don't have an appointment. I'm hoping she will have some suggestions about possible options to get me past this thing. Maybe we can do a swab and see what's growing. Maybe it's some new little nasty bug that has colonized my insides and is having a party? If it is, that might explain why the antibiotics are becoming less effective. Maybe I will also be able to see my colon guy, Dr Buie and pick his brain on this stuff too. I would just really like someone to come up with an answer because this not sleeping thing is beginning to get annoying.

Jack Layton's "Fight"

This is from Tuesdays Globe and Mail. I have more to say on this but Penny is asleep next to me and I don't want to wake her up tap tap tapping away on my iPad. Have a read.

Did Jack Layton die from cancer because he didn’t fight the disease hard enough?

Of course not.

Why, then, did so many headlines and social media messages spreading news of his passing Monday morning at age 61 announce that he had lost a battle with cancer?

Even Prime Minister Stephen Harper, in his statement about the opposition leader’s death, noted that Mr. Layton “gave his fight against cancer everything he had,” and that he “never backed down from any fight.”It’s a common cliché, one many of us use when talking about a disease that is often feared and rarely understood.

But to those touched directly by cancer, equating the illness with a war against the enemy, fighting an adversary, or suffering in order to survive can diminish understanding of the challenges and complexities faced by patients and their families.

“The idea that he was waging a battle which he lost demeans him,” said Robert Buckman, a medical oncologist at Princess Margaret Hospital in Toronto. “I absolutely feel that he did not lose to an adversary.”

Many oncologists and cancer patients have been pushing in recent years for a change in the well-meant, but often misguided words and phrases that have become ingrained in the cancer lexicon.

The outpouring of emotion over Mr. Layton’s death provides an opportunity to ask whether it’s time to move beyond the militaristic metaphors and clichés.

A significant problem is that most of the common words and phrases we use to describe the experiences of people who have been diagnosed with cancer imply that personal will and self-control play a large part in determining who will live or die.

To say Mr. Layton lost his fight implies he had a say over his fate.

“He didn’t choose any of that any more than I could have chosen the colour of my eyes: It’s that arbitrary,” Dr. Buckman said. “It’s a much more mature and helpful comment to say this man, faced with a rotten hand of cards, as it were, really gave meaning to his life and to what he did in his life.”

London-based writer Mike Marqusee, who has discussed his experiences with multiple myeloma in several pieces in The Guardian, says cancer has little to do with battle. “The [emphasis] on cancer patients’ ‘bravery’ and ‘courage’ implies that if you can’t ‘conquer’ your cancer, there’s something wrong with you, some weakness or flaw,” Mr. Marqusee wrote in 2009. “If your cancer progresses rapidly, is it your fault? Does it reflect some failure of willpower?”

Similarly, saying someone who is now cancer-free is a “survivor” conveys that he or she is somehow better than the people who didn’t make it, said Peter Ellis, staff medical oncologist at the Juravinski Cancer Centre in Hamilton, Ont.

“It does set up a battle with a winner and a loser, and I think that some people certainly think that there would be better ways of talking about this,” said Dr. Ellis, who is also an associate professor in the department of oncology at McMaster University.

Instead of fixating on the idea of a cancer battle, Dr. Ellis and a growing number of experts in the field say, it is more important to focus on learning to live with cancer.

For those undergoing treatment, this can be much more empowering than the idea they can somehow control the ultimate outcome if they fight hard enough.

It is the attitude that gets Barb Rowe-Bennett through each day. The 64-year-old Toronto resident, who has had cancer off and on for nearly 20 years, is in the last stages of palliative care after her breast cancer metastasized, or spread, to her bones and lungs.

The medication she is taking keeps her comfortable and enables her to leave the house, spend time with family and enjoy each day as it comes.

Ms. Rowe-Bennett doesn’t see herself as a “survivor” even though she has managed to outlast the cancer thus far; nor does she feel she has been cursed by bad luck because the disease is still with her.

“I just feel that cancer is an interference in your life, and you have a choice of making it good or bad,” she said. “You can bring yourself down, and it can be the worst of the worst, or you can say ‘I can carry on, I will deal with [it] on a daily basis.’ ”

One Foot in Front of the Other

I don't know what happened but something definitely was not right these past few days. Just when I was supposed to be recovering from chemo, I got worse. Headaches, nausea, chills, sweats, fever and intense fatigue. I'm sure it was a flare up of the same drain/abscess issue I've been dealing with since day one. In a bid to self diagnose and medicate (I find myself doing this often now - for better or worse) I switched antibiotics, tried to keep hydrated, slept and just generally felt like crap all the while debating the merits of spending a night at the Foothills Hospital hotel. I seem to be better today but the experience has re-awakened me to the pitfalls of a chemo-induced suppressed immune system. It has made me value the time away from chemo that I had this summer. I'm not sure if I'll be in good enough shape to get back on the horse next Tuesday but we'll see. Until then it's one foot in front of the other.