I Am Here

(Another self portrait)

Here I am, indeed.

April has been an interesting month.

For one, it marks four years since my original diagnosis. Jesus Christ, I didn't plan on writing this blog for that long. On the other hand, I'm obviously extremely glad I'm still here to do it. It means I can officially give the finger to the rather depressing "life expectancy" I was given a few years ago.

Seriously, fuck you, cancer.

It was also this time two years ago that we moved to Montreal to start my first clinical trial. While there was actually some excitement involved in moving across the country to a great city like Montreal, receiving treatment in another province was hell at times.

I'm wishing my friend Chris all the best as he begins the SAHA/Niaminicide trial away from home in New York, and the same for Bekah who has begun SGN-35, the same trial I was on last year. May these both be the drugs that knock the living shit out of the Hodge.

Ok, that's enough swearing for now.

Round three of the Bendamustine has been manageable. Again, I did not repeat the vomiting of round one and seem to have it down to a few days of dizziness and a week or so of fatigue.

This, I can manage.

'Round Here

It's been busy.

After a full few weeks, I had infusion #3 of the Bendamustine last Thursday and Friday.

So far, I feel ok. I've had the same dizziness as last time and I'm quite tired but am trying to push through it. Tomorrow, I'm heading across the border to La Conner for a few days for a little more r&r.

In the meantime, there has been much visiting and creative fun going on, including the delivery of hundreds of hand-made cards for Cards 4 Cancer day. The response was utterly overwhelming and not only were we able to deliver cards to Lions Gate Oncology, but to the Cancer Agency as well. In fact, the response was so positive, we will continue to deliver them over the coming weeks.

A huge thank you to everyone who took the time to contribute, including Edith and friends, mom, KLASS staff and Kirsten D, with special mention to Valerie and colleagues at the UBC School of Nursing - they really knocked it out of the park! Here is just a small selection of the cards we received...


It was extremely touching to see many patients' emotional response to the cards - to know that a complete stranger had taken time to create something just for them really seemed to strike a chord. Here is just one example of so many beautiful messages written in the cards:

Though we have never met, I want you to know that you are being thought of today. I hope that if the sun is shining, you feel the warmth of a sun beam. If there are showers, the cool surprise of a rain drop.

How nice is that?

We also had fun last week with the second meeting of the DCC, otherwise known as the Dorky Camera Club. We entitled this one
"For the Birds" for obvious reasons...







That last one was "artful" bird poop.

(Bird photos top to bottom): Ry, Ian, Nic, Ian, me, me)

Meaning

de·crease [v. dih-krees; n. dee-krees, dih-krees]
verb: to diminish or lessen in extent, quantity, strength or power

This is what my latest CT scan shows - "decreasing size and conspicuity of lymph nodes within the right neck, left supraclavicular region, right superior hilum, retroperitoneum, and pelvis..." There is also "improvement" in my lungs and "stability" in my mediastinum.

The word decrease is used six times in the report.

This is not a word I have read often in my files.

While the scan still showed a slightly mixed response, our assumptions (and expectations) were correct - overall, the Bendamustine is having a positive effect.

Of course, this is a relief. What is even more reassuring, however, is that my mind knows what my body is doing. I would have felt a huge sense of disconnection and bewilderment otherwise.

Now the goal is to strrrreeetch the use of the Bendamustine for as long as we can. It does suppress my counts (which are still holding up remarkably well) and there is a maximum toxicity level which cannot be exceeded, so it is not something that can be used indefinitely. Six cycles is usually the maximum.

Heading into cycle three next week, I am encouraged, and hoping that I can again avoid the side effects of the first round. So, on we go then, living with cancer as a "chronic" disease - a surreal existence for certain.

What it is all for, or means, I have no idea.

What I do know is that grace visited me three times today in the form of friendship and generosity, and that this is bigger and more important than cancer ever will be.

Today

In a few hours I will have my latest CT results.

(Oops, that sounded more melodramatic than I meant it to).

Normally, I would have inquired about them by now. Funny how things change. I feel good physically and emotionally and would obviously like this to continue. I trust that my body is responding, and these results can just damn-well live up to that expectation.

I'll let you know how it goes...

In the meantime, a few shots from our long weekend away...


Self portrait on the beach at Point Roberts


For some reason, I never get tired of shooting logs and old rope


Ian trying to shoot a very unphotogenic Finnegan


Finn - wave behind you!


These waves don't seem as big in the picture as they did at the time. If you can see the little speck behind Finn, it is actually a dude surfing or, at least, trying, which is rare.


Finn contemplated attacking this guy as he is not used to such beings emerging from the sea.


Wish I was here now with a fuzzy blanket and a white chocolate raspberry mocha...

I guess free tea at the Cancer Agency is a close second - not.