Pulling the Plug

...on SGN-35.

To my surprise, I am not going in for infusion #13 today as planned. Yesterday, I saw my oncologist and after more careful review of my scans and a recent chest x-ray, consensus is that the SGN-35 is no longer keeping the Hodgkin's adequately contained.

While I knew this would be coming sooner or later, I am disappointed that I will not be able to continue a little longer. It might sound weird, but after so many drugs, I've started to anthropomorphize them based on my positive and negative experiences.

For example, my foes have included Prednisone playing Norman Bates in "Psycho"; ABVD as Hannibal Lector; and MGCD 0103 as Linda Blair in "The Exorcist."

On the other hand, Vinblastine, Gemcitabine and SGN-35 have shared the role of Roberto Benigni in "Life is Beautiful" so it is difficult when the time comes for these drugs to take their exit.

Instead, once again, a casting call is out for the lead role. First up is a drug called Bendamustine, which is normally used for leukemia and other lymphomas but has, in a small number of cases, shown results with heavily-treated Hodgkin's.

The difficulty is that Bendamustine is not yet approved for use in Canada. So, we are waiting to see if we can get the drug quickly through the Special Access Protocol. The next challenge is whether the BC Cancer Agency will administer and pay for it. It is $8000 a dose and the infusions are three weeks apart.

What can I say - to be continued, I guess.

Blame Game

You: I thought this blog was about cancer.

Me: It is.

You: So why do you keep complaining about the Olympics?

Me: Because they are responsible for cancer.

OK, maybe not, but it's nice to have a scapegoat. Can't find a parking spot, blame the Olympics. Nothing to wear, blame the Olympics. Out of butter, blame the O...

You get the idea.

What do you blame the Olympics for? Late fees at Blockbuster? Your toddler's tantrum? Fido's fleas? Jon & Kate + 8?

Let me know what you blame the Olympics for and I'll post the replies in a future post.

email: kirstennotkristen@hotmail.com

Oops, I almost forgot one...Not being able to find the start of the toilet paper roll. I definitely blame the Olympics (and Oprah) for that.

Connecting the Dots

Honestly, if I see one more ad with an athlete eating a Big Mac, I'm going to barf.

However, if anything good can be said about the Olympics (cough, choke), it's that french-fry loving, Coke-drinking athletes will have to share the spotlight.

Countless protests, initiatives and projects are planned during the Games that will hopefully garner more worthy attention and support.

The Red Tent Project is one of them.


I remember when similar tents were pitched around Paris several years back and now a campaign is underway here to draw attention to the housing crisis on the Downtown Eastside and Canada's lack of a national housing strategy (we are the only G8 country without one).

It also seems that those who weren't before are finally connecting the dots - that the "cost" of the Games is too high - economically, socially, and environmentally. That we have better things to do than adorn ourselves in Olympic regalia or buy new flat-screen TVs to watch hockey on.

Last week, it was announced that as many as 800 Vancouver teachers could face layoffs in 2010/11. Across the bridge in North Van, impending layoffs and school closures were also announced at the same time plans are being made to line students up to smile and wave at torch bearers running through the neighborhood.

A little naive, don't you think?

Canadian Blood Services has also announced that it faces a significant drop in collection due to road closures and traffic delays during the Games. Paradoxically, they are giving away commemorative 2010 pins to those who make it in to donate blood.

The list goes on and on but the irony is not lost on an increasingly skeptical and informed public that knows we are paying now and will continue to pay long after the Olympics are over.

Meanwhile, more peaceful protesters have been arrested, this time along the torch route in Golden, BC, despite a Global TV reporter (not exactly known for their impartiality) actually conceding that the group was "doing nothing wrong."

This is not OK with me.

Is it OK with you?

While some may still "support" the Olympics (gurgle, gasp), there may be something you don't support in the future.

Wouldn't you like to know that your freedom to disagree is protected?

Worst Day of the Year?

Well, it's official.

Apparently, Monday, January 25th, has been designated as the most depressing day of 2010.

The formula for the day of misery for any fellow geeks out there is: 1/8W+(D-d) 3/8xTQ MxNA, where W is weather, D is debt - minus the money (d) due on January's pay day - and T is the time since Christmas. Q is the period since the failure to quit a bad habit, M stands for general motivational levels and NA is the need to take action and do something about it.

I figure cancer and the loss of another friend this week gives me enough to worry or be sad about without lamenting the grey sky or beating myself up over my failure to quit eating cheezies. Instead, I spent a delicious morning listening to the rain outside my office (queen-sized bed with a laptop and Finnegan at my feet), reading, writing and catching up on news, blogs and email.

I have a million things running through my mind to write about, but think I will leave them for today in lieu of sharing this with you. It makes me smile and cry (in a good way).

(you'll want to pause the iPod to the right while viewing):



Miserable Monday, be damned. It's lovely over here.

Reported

It would seem that I really am impervious to drugs.

After taking Demerol last night for pain relief after my little port surgery, I seemed to perk up and was awake until 5 this morning.

I also woke up from the conscious-sedation I had during the tail-end of yesterday's procedure. There was a sheet tented over my face, so once I realized I was still on the operating table, I wearily asked, Um, am I supposed to be awake yet?

Fortunately, the sheet was quickly removed and I was reassured that they were wrapping things up. I couldn't feel anything, so I relaxed and noticed that the radio was on and blaring the 70s disco hit, "I Love the Nightlife."

I like to boogie, but this is getting ridiculous.

Deported

It seems my handy-dandy Power Port (a device inserted in the chest from which blood can be drawn and chemo given to preserve my already elusive veins) has resigned after a two-and-a-half-year term, so tomorrow I will be having it replaced and another put in.

When the nurse went to access it last time I had chemo, I immediately felt pressure, like the line to the port was blocked. When we tried it again, same thing, and we noticed a bit of swelling, so decided to stop. General consensus is that it may be cracked.

This is rather annoying as I am just getting over the tendonitis in my hand and arm and now I will have two (albeit, minor) wounds to heal from over the next few weeks. Still, I hate to even complain about this as the last while has been much more challenging for a number of my friends, near and far.

Moreover, yesterday was one of the most beautiful and affirming days of my life.

A number of participants I have had the pleasure to write with in our workshops joined together to present Voices of Callanish, an afternoon of words and music. We had a full house and it was truly breathtaking to watch the writing I have seen come into being over the past two years find a voice within the larger community.

I can't even imagine what these last few years of my life would have been like without the opportunity to write with and share the company of such fine individuals.

I raise my pencil (mechanical, of course) to each and every one of you.

My Left Finger

...is the only means I have to type these days.

I seem to have inadvertently given myself tendonitis in my right hand and elbow and have to rest them.

Then how are you writing this? you ask.

Actually, I am making my mom type this out for me. Say hi, mom.

Hi, this is Kirsten's mom.

OK - this is Kirsten again. My mom has stage-fright and can't perform just now.

Just wanted to leave a note that I won't be responding to emails very quickly these next few weeks, so bear with me. I can still dial, though, so the phone is a good option.

I continue to maintain a decent level of energy after last Friday's treatment. My cough, however, seems aggravated lately by all the damp weather here, so I am slowly re-introducing the concept of cough drops after last year's near-choking incident.

The Fisherman better be my friend.

New Job

So, I'm feeling a little better after "Madmenning" myself (above) and hiring myself on at Sterling Cooper. I also thought, WTF, I've already got cancer, why not take up smoking? The martinis, well, that's not so new.

I also feel better after today's doctor's appointment. My primary oncologist is back and, let's just say, I feel a lot better with him back in the driver's seat. Or, rather, the co-pilot seat. I'm flying this plane, baby.

For now, as long as I continue to feel well and the side effects don't become unbearable, I will remain on the SGN-35 trial for another 2-3 cycles before we scan again. Infusion #12 is tomorrow.

My main concern is increasing neuropathy in my hands and feet. As it is unknown whether it will ever go away, I don't want to have it get to a level I can't live with indefinitely. Right now, it is only deemed Grade I.

So far, the three middle toes on my right foot are most affected. Both feet and my shins feel somewhat numbish and my hands feel a bit feeble when I try to do-up buttons or write. Not writing is not an option so that's my gauge.

On Tuesday, I managed a Nia yoga class (kind of like interpretive dance crossed with yoga done to funky eastern music). At the end, when I went to thank the teacher, I burst into tears and told her I hadn't been able to enjoy that kind of movement with my body in almost four years due to chemotherapy. Then she burst into tears.

What can I tell you, it was a yogi lovefest.

Namaste.

Today, I woke to the news of another friend's passing.

While it is incomparable to the grief her family is undoubtedly feeling, I am angry at what seems like an endless loss of beautiful, contributing, thoughtful individuals to the world this past year.

Where is the sense?

I can't answer that question tonight, so I will leave you with some of their diamonds...

Triece - that humour is possible anywhere

Catherine - that you can always find your way home

Kathi - that the facilitator will be tested

Catherine C. - the story of her mother's pearls

Eric and Adrienne - in addition to their inspiration as individuals, the tenacity, determination and love of their mothers, Kathy and Alison, who remind me very much of my own

Cheryl - that it's better to sing terrified than want to and not

Chantal - singing "Clouds" together and the blue guitar she played so beautifully

Jamie - the support of his community and grace of his dad and family

Jan - to eat that bloody chocolate-chip cookie and not worry about it and, more importantly, how to dance when the music stops playing

Zoë - Rock it, sister, tonight we're burning down the house

Five Ring Circus

2010.

Wow. I'm glad to see it but wish it hadn't been appropriated by the upcoming Olympics.

OK, I apologize in advance to a few of my dear friends with whom I do not see eye-to-eye on this with, and I was kidding (sort of) when I told you that if you were picked to carry the torch, aka "The Big Dube" (seriously, what were they smoking when they approved that design) that I'd run after you with a bucket of water and put it out. But, come on, does anyone still buy this "spirit of the Games" bullshit?

Are they really worth a legacy of decimated funding for healthcare, education, social programs, the arts and, ironically, amateur sports?

I had planned to be out of the country (OK, just Washington State) by the time this gong show officially arrives next month, but given the growing resistance and disdain of the Games by many Vancouverites, and the fact that I have treatment scheduled right in the middle of them, I'm thinking it might be interesting to stick around.

For example, I may just want to see if I can drive in the "priority" traffic lane set aside for IOC dignitaries and "elite" guests and athletes to see if I can get to the Cancer Agency any faster for chemo. After all, what should be deemed a priority, a cancer patient having access to a life-saving drug or an athlete getting to the Oval on time to ice dance? We shall see.

Or, I may wear a "non-celebratory" t-shirt downtown and see if one of the more than 17,000 police, security or armed forces guards, the largest security operation undertaken in Canadian history (the budget for which is climbing to nearly 1 billion dollars), will detain someone on chemotherapy.

But officer, I'm palliative...

The very act of demonstrating and marching in Vancouver has become a defiant act where many of the streets and sites are designated Olympic-only zones that are cloistered with bylaws that restrict speech, protest, and assembly.

Seems to me that when free speech is outlawed, we must raise our voices and shout.


Is it just me or does the dude on the right look a little stoned?

Sign of the Times

(you'll want to pause the iPod on the right if you're watching this)



Hello.

Home from holidays, rested and refreshed, though a little brain dead at the moment.

Da da da...