cancersmancer

Kirsten's celebration

2011-02-12T13:21:00.000-08:00

We invite you to be with us on Sunday morning at 10:00, February 20 to celebrate Kirsten. As she requested, we will gather in Cates Park in North Vancouver to be together and with her. Kirsten would like people to wear their favorite colours, bring a flower with them and, if you like, a memory, story, or poem to share. Children and dogs are welcome. Please email ipowell@nvsd44.bc.ca with any questions. Thank you.

2011-02-08T16:15:00.000-08:00

Kirsten was with us from December 24, 1973 until February 7, 2011.

She will be the light of our lives forever.

Kirsten is not doing well

2011-02-05T15:13:00.000-08:00

Kirsten has asked us to send this message if she was not well enough to do so. She would like those who can to light a candle for her. She takes comfort in the thought of this.

Thank you from Kirsten and her family

End of 2010

2011-01-04T04:54:00.000-08:00

Hello everyone.

First let me apologize for being MIA for so long and causing many of you to worry. I am OK, but December was a hellish month.

The problem we are facing now is that the Revlemid seems to be holding the Hodgkins at bay, but it is driving my blood counts down each cycle, so much so that I wound up in the hospital last week.

At about 10pm, Ian was tipped off by my incoherence in answering some of his questions while I was having a little melt-down. We took my temperature and I did have a fever so it was decided I would go to VGH Emergency, where they were concerned I might have an infection of some sort.

It turns out my hemoglobin had dropped to 44, so I received 4 units over the next day while they ran a lot of other tests. While the care was more or less exemplary, I found myself becoming highly stressed in the hospital and struggle with not viewing it as a traumatic experience.

I have felt a lot of anxiety lately. I am unsure and upset with the compromised state of my body. I am struggling to find purpose and meaning, and how to regain some sense of normalcy in my life. But, I know getting on here is a good start as I just haven't had the energy or inclination until now. Thank you, dear Emily. Your visit tonight couldn't have been more timely to give me the push I need.

Love and thanks, too, to all of you who have sent, and continue to send, your messages of support and keep me in the loop with your updates despite my lack of reciprocating. I look so forward to eventually being able to remedy that.

Just a Quick Post to Say

2010-11-28T12:07:00.000-08:00

...I am still not feeling great, but "they" say I am making improvements, so I guess I will go with that. I am still in bed a lot of the time, have lost a lot of weight, and am having to regain my muscles/strength to walk without worrying everyone.

Since I last wrote, I've started a new chemo, Revlamid/Lenolinomide, which is just one pill taken orally for 21 days, then 7 off. I've just finished the 21 days and haven't had any major side effects, but because it is only one capsule daily, it will take a few weeks to see if it is having any effect or if it is going to give me any trouble.

My skin is still uncomfortable due, now, to excessive dryness, so it burns when I stretch. What I wouldn't give to be comfortable in my own skin again. I've had more than a few cries these past few weeks. I just want to be a able to do at least some of the things I used to take for granted, like take Finn for a walk.

Well, After Last Time's Rather Heavy Post...

2010-11-01T15:42:00.000-07:00

I thought I'd do a light and easy hair update. Besides, who can stay sad when George Michael is wiggling his butt in your face.

But I digress...

Now, where has all my hair gone?

South, apparently...

It seems just one dose of the Vinblastine caused it to start falling out, and, like last time, it also changed the texture. It seemed really waxy and hard to brush, but it was when I woke with a Marleyesque-dreaded unicorn horn that I knew I had to take matters into my own hands, hence the cut with my Ikea scissors.

A little Pat Benatar, but not bad, I thought. Until...

My TCM practitioner, yes, TCM practitioner, of all people, informed me as I was lying on her table that...I had "a tail."

Of hair? I implored in horror.

Yes, about this long...

Well, stirrup my pants and put me in an Wham video.

Who could know such a thing when one cannot see the back of one's head? I thought that's what friends and family were for - to tell you when you have broccoli in your teeth or when your fly is undone. Or, say, when you are sporting an 80s rat tail some twenty-five years after the fact.

I thought you people were supposed to be looking out for me. Meanwhile, I'm strutting around town (ok, maybe just the bedroom) all week with a tail that was apparently long enough to braid. Yes (be still my beating heart), braid.

But I'll get you, my pretties.

There's nothing a little El Debarge for Christmas can't fix.

(and thanks, Jenn, for tidying me up)

Rainy Thursday

2010-10-28T17:17:00.000-07:00

(pause ipod on the right if viewing)

Thanks, Dallas. You put it better than anybody else today.

But in my own words, finally a note to update as I have been completely unable to do this in any sort of reasonable time frame, via phone, email, or here (laptop death by falling has not helped matters, and, yes, it is possible to destroy a Mac, especially when it throws itself off the bed and hits a chair on the way down).

Things have been rough.

Correction.

Things have been down right awful with the exception of the last few days.

While we did manage to get a handle, more-or-less, on the itching through the use of Atarax and one dose of a chemo I've had in the past, Vinblastine, the chemo created a new set of problems that continued to leave me pretty much bed ridden for the last several weeks.

When I've had Vinblastine in the past, I've tolerated it quite well. This time I experienced the fairly rare side effect of nerve pain in my face and jaw for about 3 days which was excruciating. Imagine thousands of pins being poked through your face from the inside.

Actually, don't. Who wants to think about that?

The Vinblastine also really knocked my counts back which were still trying to recover from the Bendamustine. I was beyond tired and also couldn't regulate my body temperature, so every time I moved (which was rare, but when I did), I would spend nearly an hour trying to get warm again.

When I was up and at least able to watch tv in the living room, it was usually in my ski jacket with two or three blankets and a hot water bottle. Oh, and a touque. Finally, I had three units of blood transfused, which didn't give me the expected boost right away, but I am definitely feeling an improvement these past few days.

I have been out of bed and doing light (very light) activity like a few laps around the inside of the house to try and build my stamina. I feel like every muscle I ever had is gone from all the time in bed. It's getting better, but my core muscles also really atrophied so it's hard to even stand up straight, but that is improving.

So now what?

The CT scan I had last week indicated "stability", more or less, in the existing areas of disease, but the disease in my liver has grown.

Dr. C has been queuing up Revlamid for me which is a drug normally used for multiple myeloma, but has shown novel results in some cases of Hodgkin's. The Cancer Agency would not agree to pay for me to try it (even though it is a drug they have on site), but, fortunately, the drug company has a compassionate use program and we have extended coverage that, to our surprise, covers 80%.

I was hoping for more time to recover before having more chemo, but, for obvious reasons (my liver), it is best if I start as soon as possible, which could even be in the next few days.

Of course, the decision to start or stop any drug is up to me, but I'm just finding lately it's one thing to say refractory Hodgkin's can often be managed as a chronic disease, bridging the gaps from one emerging treatment to the next, but it is another thing to live it, and I am tired.

On the flip-side, I could begin the Revlamid and find I feel a whole lot better, or, dare I say, have this be the drug that finally finds the right pathway to the HL and murders the little fuckers (sorry, but it's a fuck kind of day).

Regardless, I guess anything is still possible, I just don't feel that way right now, and I would like to.

It's just so hard to feel hopeful and strong when your body feels so weak.

Summer Highlight Reel

2010-09-30T02:34:00.000-07:00

It's so good to be back in the blogosphere, even if it is to report the difficulty as of late. I am extremely grateful and touched by the outpouring of support, near and far, particularly in light of the fact that my energy has made reciprocating and keeping up correspondences such a challenge for so long.

Please know that each and every email, call, letter and kind deed mean the world to me and, despite cancer being an unwelcome guest, living with it has invited so many incredible people into my life, some I have never even met.

On that note, I think maybe, just maybe, I am starting to feel a wee bit better (though I am up at 2 am because my feet were so on fire in bed, I thought I was going to tear them off). However, bowl of Haagen Daz now in hand (which is tempting to slather on my feet), I thought I would post some photos of a few of summer highlights before I became the Itchy & Scratchy Show.

Some of you may recall our "refurbishment" last year of a little Boston Whaler. I am happy to report that Suzy Spitfire (long story) got back on the water this summer...

We designed a new decal in a vintage font with an appropriately cheeky hula girl...

I even found a "real" hula girl for the dash at the carwash. You will also note the extremely practical vintage fabric throw cushions I made for the bench seats. I probably shouldn't mention that on this particular trip, we packed the cushions but forgot our life jackets...

Here is Suzy, our official mascot...

Ahoy Suzy!

After a stalled motor, several failed attempts and a new starter, we were finally heading up Indian Arm on a gorgeous summer day (don't look, I have bad hair and gum on my flip-flop)...

All was going well...until...the engine cut out halfway up the Arm...(approximately 8 kilometres from the boat launch). I have no idea why I am talking like such a dork or referring to myself in the third person...

Luckily, we'd bought a trolling motor to have on board as a back-up, which had us moving at a snail's pace (but at least we were moving)...until...the battery died...

But, like all good sailors, I was prepared with supplies...a tin of mints in my, um, purse...

We also forgot water which we discovered to be rather unfortunate when it became apparent that we were going to be rowing with our one oar about 2 kilometres past that small island in the distance...

At one point, we could have flagged down the harbour police, but we were too proud. However, after an hour and a half of rowing, we said f*ck pride and accepted a sea rescue...

Finally, after handshakes and the promise of delivering a good bottle of wine to the dock of our new best friend, we made it back to Cates Park just in time to see this lovely family unloading their slightly larger Boston Whaler that had three, count 'em, three, Merc' 90 engines (not to mention, they were towing it with some sort of semi...)

Slightly humbled, we took a few days' break from boating and did the obvious, drove to Squamish for grilled-cheese sandwiches...I love this place!

They have 64 kinds!

Granted, it's not exactly haute cuisine, but they even come with cheesies and a peppermint patty...

In the midst of all the great weather, we also decided it was high time to have a "house" concert in our back yard. Only, after 40 record days of sunshine, it decided to rain that day, which threw a rather large wrench and an ugly blue tarp into our plan...

And, because I can't play anything other than the doorbell, I was on wine and cheese duty. I also had so many tea lights lit by dark that I'm surprised nobody caught on fire. That would have been awkward.

The young and talented Saul Chabot opened the evening (great pic below by his mama, Nicol Lischka, who played next in her fantastic duo with partner, Ryan Matches, both of whom I seem to have no photos of). I must have been lighting more candles...

The boys of Five Star Motel (insert shameless promotion of husband's band here. Greasy Thumb and Don't Try Writing are a couple of my personal favs) came on last with Ian starting on the djembe. However, once he moved to his drum kit, I think the whole neighborhood knew we meant business as the band was fully mic'd...

Still, everyone managed to get back on stage for an encore without the police showing up...

...including Ian, who, as usual, is hidden by front man Paul's guitar arm.

As well, in the midst of lots of fun this summer, we also managed to renovate a good portion of our house. When I look back, I realize that I haven't felt as horrible as I have lately for as long as it seems. It's nice to remember that and know that this, too, shall pass.

Bad Blog Owner

2010-09-27T08:51:00.000-07:00

That I am. However, September did not turn out to be the month I had hoped for. I have lost more friends to this stupid disease and have been plagued by symptoms/side effects myself.

But, before I go worrying everyone, let me preface that by saying that there have not been any dramatic shifts in disease activity (that I am aware of). Instead, I have been riddled with itching comparable to what I experienced in Montreal on the MGCD 0103 trial. As well, the chronic anemia I have has been really flaring leaving me with very little energy.

I had hoped that September would be a gentle ease back into autumn activities, workshops, a few courses and ongoing projects; however, I have been pretty inactive most of the month which, of course, for me, leads to sporadic bouts of situational depression.

I think it is safe to say I am also experiencing significant treatment burnout. In the past, this tends to happen when I enter a phase without a definite plan, which is the case now that I have finished the six rounds of Bendamustine. Well, actually, that's not exactly true.

Dr. C. here has been extremely on-the-ball with regard to future treatments and already has several options queued up. I guess it is just hard to get excited about more chemo (it has been four-and-a-half years of one drug or another) and the unknown side effects that come with it. Still, in writing that, I am glad that options have thus far kept appearing when I need them.

That said, equanimity is an elusive state these days. Not to mention, relentless itching, while it might sound trivial, has been one of the hardest symptoms for me to deal with throughout this whole ordeal.

There are probably no words to truly describe what it feels like to have my entire body engulfed in such an extreme physical sensation. It is not like just having a camping trip's worth of mosquito bites - the best way I can think to describe it is to say it feels like all the blood in my body is coursing through my veins with daggers scratching me unceasingly from the inside. It is worse at night - I do not sleep and instead writhe around experiencing alternating states of itching, scratching, anxiety, and utter exasperation.

While itching is a common symptom of Hodgkin's, we have never felt that it is a definitive indicator in my case as I have always had underlying skin issues. I have been extremely itchy and had no disease activity, as well as had significant progression and no itching, so it is not especially reliable. However, it does seem to be my nemesis throughout these past few years. Our best guess is that it is, for better or worse, an auto-immune response of some sort.

So, with all this talk of cat-scratch fever, are you itchy yet?

I apologize if you are. Whenever people talk about itching, I start to scratch, but that's probably just me and the crack-head driven rototiller running amuck through my veins.

We're On the Air

2010-09-05T09:37:00.000-07:00

Hello out there. I'm back.

Well, I didn't really go that far in terms of distance this summer, but I do feel like I have travelled significantly. More on that later...

For now, I would like to post about other travels. My mother-in-law Edith is currently visiting family in the UK and, as part of her trip, has decided to visit the Callanish Stones on the remote Isle of Lewis in the Outer Hebrides of Scotland.

The stone circle at Callanish is believed to be more than 5000 years old and is considered by many to be one of the world's most sacred sites. The purpose and use of the stones has been much speculated upon, but it is generally agreed that it was originally conceived as an astronomical observation device.

Many of you know, of course, that the Callanish Society here in Vancouver, of which I am gratefully a part, also bears this name. The sound of the word Callanish and the beauty, lore and enduring strength of the magnificant stone circle are what complelled executive director Janie Brown (who is also my teacher, beloved friend and a whole lot of Scot in a wee body) to found the Society with this name more than a decade ago.

To be a part of the Callanish community is to know intimately the power and strength of the unassuming circle, particularly in times of illness. I have sat in many over the last four years, at times speaking, writing, weeping, laughing and, most often, deeply listening to the wisdom of those who comprise each unique configuration. That our journeys, individually and collectively, are connected to a lineage that is centuries old, whether we be of Scottish descent or not, is of extraordinary comfort.

So, when Edith graciously asked if she could take anything to, or, do anything at the Stones for me, you can imagine how touched I was. I gave it a lot of thought and, not surprisingly, decided that what seemed most appropriate and meaningful would be to have her carry my own small stone to Callanish, to be placed amongst the standing giants.

Prior to its journey, the stone I selected (from the shore of a beach that is special to me) spent time in the hands of a number of loved ones, each imbuing it with their hopes, intentions and wishes of healing for me.

The morning of its departure, I held it in my own hands and read a blessing by John O'Donohue dedicated to all who struggle.

This Tuesday, September 7th, at 7am (PST) this small stone and the immense energy it carries will be placed in the Callanish Circle, on the Isle of Lewis, nearly 5000 miles away.

Summertime...

2010-07-20T11:21:00.000-07:00

...and the livin's ea-zay.

Still, I thought I better get on this thing and let you know that I have not been eaten by shag carpeting despite rumours to the contrary.

I've just been busy enjoying all that summer has to offer...lots of walks, lounging, ice tea, reading, martinis, swimming, writing, visiting, and, oh yeah, MORE god-damned painting.

Many, I'm sure, think I have lost my marbles by painting virtually everything we own white (particularly in light of the fact that we have a large, unruly brown dog). However, there is a method to my madness. That, or I just really like to spend my time cleaning. Not.

But, I do love textiles and have quite a short attention span. So, the best bang for my buck? Lots of colourful throw cushions and blankets that I can change on a whim. Cheap and cheerful.

I also like to think that, rather than being really boring, choosing white as a paint colour actually indicates my vast complexity. It is, after all, a composite of all the colours of the rainbow. In fact, there are 158 different shades of white according to Benjamin Moore.

So, there you have it. Complex, mad with colour and drunk on summer.

Really, is there a better way to live?

(Finn after too many martinis)

Thanks to you...

2010-06-29T19:41:00.000-07:00

The Canadian Cancer Society issued a media release today publicly stating its objection to the Quebec government's plan to loan Jeffrey Asbestos Mines 58 million dollars. The CCS also sent a letter to Premier Jean Charest urging him not to back the loan.

While the battle is not over, the letter and public statement by the CCS are important steps in stopping Canada's participation in the deadly sale of asbestos to third world countries, and the Cancer Society took action due to intense public pressure.

Thank you to the many of you reading who took the time to write the CCS, Charest and the Prime Minister (aka "the Asshole in Charge") to make your voices heard.

And thank you, too, for the many good vibes and wishes sent my way for my latest CT scan.

Drum roll please...

I'm happy to report continued stability and a few more decreases.

Not a bad way to start the summer. Not bad at all.

Now what else shall we tackle?

Speak Up

2010-06-24T09:45:00.000-07:00

It will be remembered as an act of barbarism in the history of industrial development where asbestos was knowingly allowed to be used, and where workers were knowingly subjected to it.—Gobal Krishna, activist

Last week, 37 physicians from 19 countries signed a letter to Quebec Health Minister Yves Bolduc, urging him to comply with the medical code of ethics and stop overlooking the risks posed by asbestos. Earlier in the year, over 100 scientists from 28 countries sent Quebec Premier Jean Charest a letter appealing to him to put public health ahead of trade.

You'd think this was a no brainer, but apparently not.

In 2008, the $100-million Canadian asbestos industry exported 175,000 tonnes of chrysotile; almost all of it went to developing countries, including India, Indonesia, and Bangladesh. Now the asbestos industry in Quebec is asking for and will likely receive a 58-million dollar subsidy from its government unless public outcry is heard this week.

Please take a minute of your time today to email this letter to Canadian Cancer Society CEO, Peter Goodhand (pgoodhand@cancer.ca), to let him know Canadians refuse to export illness to developing countries and want the CCS to publicly oppose the subsidy.

Afterall, you can't grow daffodils in asbestos either.

For more information, click here.

Tempting Fate

2010-06-23T22:40:00.000-07:00

So, today the sun finally came out to play and after a busy morning and a great hike along the river with Finn, I caught a nap in the hammock on our deck. It was so nice to relax as there hasn't been enough of that lately.

However, tonight the rain started falling again so I had to bring our patio cushions back inside for what must be the gazillionth time this season. So much for the Pottery Barn lifestyle.

Anyhow, while I am exceedingly overtired and prone to temper tantrums about baseboard and butcher block, I am still feeling great. Therefore, I'll be damned if I'm going to go in tomorrow and hear anything other than good news about last week's CT scan. Sure, I'm probably tempting fate here, but, screw it, I like to live dangerously.

Perhaps I should march in to my appointment tomorrow in go-go boots shouting Don't bring me down, Brrrrrruce...

Oh, wait, my doctor's name is Joe.

No matter, you get the point.

What's with the flashing hot dog?

The Spacious Heart

2010-06-20T18:20:00.000-07:00

Last Wednesday was stunning.

Callanish played host to several hundred generous hearts who attended its biggest fundraiser to date at the UBC Museum of Anthroplogy in Vancouver.

Those of us lucky enough to attend were treated to unparalleled performances by pianist, Maryliz Smith; flautist, Lorna Mc Ghee; violinist, Joan Blackman; and, cellist, Ariel Barnes.

It was humbling, to say the least, to get up and speak amongst such talented artists; however, I am always grateful for the opportunity to gush about the people and organization that have had such a profound effect on my life. By request (though I am somewhat shy in doing so), I am including part of my talk here from this special evening.

I began with a poem written a few months ago after I requested (god knows why) and received my medical records in the mail. While what they contained was no surprise, as I already have most of the documents in some form or another, it was a rather daunting and unsettling experience to look at them all again.

Ironically, as depressing as this poem may sound to you, I actually felt better after writing it. In doing so, I felt like I had the final say.

For the Record
by Kirsten Andersen

You arrived
tattered and torn
bursting at the seams
spilling forth
an account of this body
Four long years
fourteen hundred and fifty-two days
narrated across thousands of pages
by countless doctors
in Vancouver
Montreal
Seattle
Texas
all describing the “unfortunate young lady”
“an anxious 32-year-old”
“with no history of illness”
“thin and pale”
“a sizeable mass in the chest”
“unusually aggressive disease”
“no known cure - worldwide”
palliative chemo for this “tragic case”

Am I tragic?

These words have been dictated, transcribed, typed
and now delivered to me in a ragged envelope,
arriving with the flyers and bills
lying beside me in bed this morning
GPs, surgeons, oncologists, endocrinologists,
radiologists, hematologists,
all have had their way with my body,
its blood, its marrow, its developing cells,
telling a story
seemingly hopeless and futile
sad and tragic
until
now

***

After writing this poem, I asked myself:

“What did I mean by now?”

“When was now?”

When did the repair of a body, spirit and heart broken by cancer, begin?

It occurred to me that now was in fact long before the few minutes spent writing this poem. That an invisible mending had begun years before when I first walked through the door to Callanish.

It began when I attended my first Young Adult Support Group at Callanish the evening of my first day of chemo in May 2006.

It began when I attended my first retreat in January of 2007, three months after a stem cell transplant left me confused and unsure how to approach the future.

It began at Callanish in the city, sitting in many retreat day circles and writing groups after I learned that the transplant had not done what was intended and that the cancer had spread to my liver and bones.

It began at a weekend workshop entitled the Sacred Work of Dying in 2009 where we explored the emotional and spiritual obstacles to piece of mind and heart.

Heart.

Heart is what beats steadily at the centre of all this work at Callanish. It is offered freely, without exception, without limits.

Whether you are young, old, man, woman, gay, straight, Catholic, Jewish, lactose intolerant, there is a place for you at the Callanish table.

Heart is encouraged and nourished in each of us who belong to this community.

It is what many in this room can attest to creating the conditions for healing, whether we are living with or dying from cancer.

And it is the support of this unconditional compassion that brings us here tonight to share in a feast for the ears, and to rest in the spacious, extraordinary heart that is Callanish.

***
My other two extraordinary hearts with me on Wednesday,
my mom and Brian.

Movers and Shakers

2010-06-14T14:00:00.000-07:00

Just stopping in to say hi, I'm alive (though still very much covered in paint).

The renos are coming along and we actually spent our first night upstairs yesterday. It's a bit of an awkward set-up as all of our clothes and towels are still in the downstairs suite, and because we covered over the interior stairs to put in our flooring, we have to use the outside ones temporarily to go down to shower and get ready.

Still, we could have worse problems. Oh, wait, I guess we do. Regardless, it is wonderful to be sinking our teeth into a major project other than cancer. I feel remarkably well and am convinced that the Bendamustine is continuing to work. I have my next CT scan this Thursday, so we shall see.

In the meantime, I'm looking forward to changing out of my grubby work clothes to get all dolled up for a Callanish fundraiser this Wednesday. If you are a lover of classical music, then this is the hottest summer ticket in town.

I have been remiss in inviting all of my favorite family and friends, so if you are reading this and would like to come, there are still a few tickets left. I'll be speaking briefly (oh dear), and if you'd like to support the incredible work of the Callanish Society while enjoying beautiful music, fine wine and gourmet cheese at the UBC Museum of Anthropolgy, check out the flyer below for ticket information.

Now back inside to unpack all our boxes. I am seriously considering radical minimalism.

Awake My Soul

2010-06-01T00:09:00.000-07:00

This video makes me laugh and also indicates my state of mind as we are now knee-deep into home renovations.

What a bizarre and splendid ride this is - chemo one day, drywalling and painting the next, a gong meditation (with seven gongs!) yesterday and an incredible show at the 560 Club last night with Mumford & Sons. I've been obsessing over them since last year and they didn't disappoint.

They are such incredible musicians and beautiful song writers. We bounced along to the beat of the kick drum with about 600 others lucky enough to score tickets to the sold-out show.

One weird thing we noticed, though I'm not quite sure why, was the oddly disproportionate amount of tall people at the gig. Now I am quite tall myself, but I actually felt like a weeble amongst trees. I'm not sure what that was about, but it made the evening just that much more interesting.

Then it was back to renos this morning. I really must remember to reload my iPod as I like to have it cranked while we're working. However, my audio book of Irish poet and philosopher John O'Donohue has mixed itself in with the songs so, one minute, I'll be jammin' with Ben or Bob, the next, John comes on with his wistful Gaelic accent waxing poetic about the dimensions of the soul.

I told you, it's a bit of a trip around here lately. C'mon over!

While I Was Gone...

2010-05-25T23:06:00.000-07:00

I had my 30,000th visitor here and it was none other than my wonderful friend, Kirsten.

Hello, my friend! What a great name you have.

Kirsten also has a blog, the delightful Sew Lovely that chronicles her crafty adventures on beautiful Bowen Island here in BC. Be sure to check out the adorable gnome garden she recently created for her
sweet son, Logan.

I want a gnome garden!

Having just returned home from a week-long retreat, with time spent hiking in the woods, I remembered all the time I spent imagining fairies in my own childhood gardens. I'm sure they visited.

Now what's visiting is an expectant mama skunk who keeps "off-gassing" outside our window. We don't have the heart to evict her from her burrow in our front yard with her impending arrival so near, but it is making Finnegan crazy and us nauseated. Not to mention, I had chemo yesterday and today.

Pass the Ondansetron.

Hopefully, this round will go as smoothly as the last, though I had a few random barfs while away last week. I'm set to scan again on June 17th.

These past few months have been a time of many sad endings and beautiful beginnings, as all time is, I suppose. More friends lost, found, diagnosed, in remission, stable and dying. I lost my grandma too.

More babies, moves, renos and weddings.

More nature, more music, more writing.

It has been a period of relative "stability" for me, so I continue trying to figure out how best to live meaningfully in this circumstance I find
myself in.

Lucky for me, I have many dear hearts - yours - near and far, to help me do this.

Techno Sabbatical

2010-05-14T17:29:00.000-07:00

Ok, I've been seriously neglecting my computer.

The emails in my inbox are so fed up, they're considering sending themselves elsewhere, to someone who will actually reply to them.

Sorry about that.

Don't get me wrong, I LOVE hearing from everyone, but it seems our run of good weather here on the west coast has most of us out enjoying it, and the last place I want to be is on my laptop.

My cyber neglect is, however, a good sign that I'm feeling well. This third round of Bendamustine has gone smoothly and I am set to have the fourth round on the 23rd and 24th. I will have my next scan toward the end of June.

My oncologist is also looking ahead, which is far preferable to the former "sorry, the tool box is empty" approach we have, at times, experienced. We are aiming to stretch the use of the Bendamustine out to try and get in the maximum six rounds. My bone marrow is already showing signs of fatigue though so, hopefully, it and me will be able to have a little rest before the next course of chemo.

With that in mind, I am heading off again tomorrow on a Callanish alumni retreat with fine friends, amazing food, and plenty of time to reflect and write about this path I am on. I look forward to it, but it's certainly no walk in the park.

Ironically, while I'm unplugged, it looks like I'll hit my 30,000th visitor here in the blogosphere. Albeit, 29,950 of those visits are probably from my mom, but if you happen to scroll down to the bottom of this page and discover you've hit the magic number, do drop me a line so I can at least give you honorable mention.

Thank you to all of you near and far who continue to accompany me on this journey. I have been the recipient of more kindness than one could ever ask for and it has profoundly touched my life. Like this wee video confirms, it can, indeed, change the world too.

I Am Here

2010-04-27T08:45:00.000-07:00

(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

2010-04-19T21:34:00.000-07:00

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

2010-04-09T16:37:00.000-07:00

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

2010-04-08T09:53:00.000-07:00

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.

Salad Days

2010-03-29T21:10:00.000-07:00

I had my first CT scan since starting Bendamustine today, and it only required three pokes instead of the five I had last time to get the IV in.

Yes, I am being mildly sarcastic.

Anyway, as most of you know, I like to have my test results lickity-split, prior to my next appointment if possible, in order to avoid walking in unprepared. However, this time, I am not scheduled to see my oncologist until next Thursday, the 8th. I am quite sure he will let me know the results beforehand but, even so, I am not in a huge rush to get them.

I guess it is because I have been experiencing an incredible resurgence of energy since mid-way through the first cycle. My cough is still gone and the node on the base of my neck, which is one of the only ones I can ever actually feel, is currently undetectable. Over the past few years it has ranged from pea to baby-carrot sized. Did I mention that I hate baby carrots?

So, whatever the reason, I want to bask in what I believe to be true, that the Hodgkin's is taking a hike right now (I hear hell is a good place to visit).

Now, since we've just been talking vegetables, I may as well post one of my favorite spring "love" poems.

(Wow, that was certainly one of my more bizarre segues...)

I included this in a card to some incredible friends at their beautiful nuptials this weekend, and also dedicate it to the memory of my writer pal, Peter, who so loved to play with words. I think he would like this one too.

Vegetable Love
by Barbara Crooker

Feel a tomato, heft its weight in your palm,
think of buttocks, breasts, this plump pulp.
And carrots, mud clinging to the root,
gold mined from the earth's tight purse.
And asparagus, that push their heads up,
rise to meet the returning sun,
and zucchini, green torpedoes
lurking in the Sargasso depths
of their raspy stalks and scratchy leaves.
And peppers, thick walls of cool jade, a green hush.
Secret caves. Sanctuary.
And beets, the dark blood of the earth.
And all the lettuces: bibb, flame, oak leaf, butter-
crunch, black-seeded Simpson, chicory, cos.
Elizabethan ruffs, crisp verbiage.
And spinach, the dark green
of northern forests, savoyed, ruffled,
hidden folds and clefts.
And basil, sweet basil, nuzzled
by fumbling bees drunk on the sun.
And cucumbers, crisp, cool white ice
in the heart of August, month of fire.
And peas in their delicate slippers,
little green boats, a string of beads,
repeating, repeating.
And sunflowers, nodding at night,
then rising to shout hallelujah! at noon.

All over the garden, the whisper of leaves
passing secrets and gossip, making assignations.
All of the vegetables bask in the sun,
languorous as lizards.
Quick, before the frost puts out
its green light, praise these vegetables,
earth's voluptuaries,
praise what comes from the dirt.

2010-03-26T10:25:00.000-07:00

For Ian

The day is done, and the darkness, Falls from the wings of Night,
As a feather is wafted downward, From an eagle in his flight

- Henry Wadsworth Longfellow

May you soar amongst the eagles, my friend.

Still Groovy

2010-03-15T21:44:00.000-07:00

I'm happy to report that I continue to feel well after the Bendamustine.

I still have some dizziness, but my oncologist thinks this could likely be caused by the fairly large dose of dexamethasone I had prior to the infusion, and that it should wear off within a day or two.

Still, I am taking it a little easier after a very full few weeks, which included a day trip to Victoria to see friends...all by myself.

By my very-loved ones' (mom and Ian's) precautions, you would have thought I was traveling to Patagonia...

Make sure you hold the handrail on the ferry...and don't sit near anyone who is sniffling. Have you got your hand wash? You should take nuts and raisins in your purse...and don't forget saltines in case you feel nauseous...

(Don't worry, I know how very, very lucky I am to have them).

In any case, I made it back in one piece after a great lunch with Josefine, Chad and wee Erik at Rebar, Victoria's well-known vegetarian restaurant, and a visit with my talented writer friend, Leah, at her sweet, cozy apartment.

Speaking of writers, I also wanted to mention another little project I'm working on in conjunction with the Lynn Valley Literary Society and Mollie Nye House...

(pause iPod on right if viewing)

The week of April 10th, thousands of cards will be distributed to patients at cancer centres around the world as part of an initiative organized by Spirit Jump whose goal is to provide hope and comfort to those living with cancer.

Here, North Shore Cards for Cancer is gearing up to deliver cards with uplifting messages to individuals receiving care at the Lions Gate Hospital Chemotherapy Unit (where I received much of my previous treatment).

If you or your community group, school, church, or organization might be interested in contributing cards for this event (or starting your own team), please get in touch: kirstennotkristen@hotmail.com

This project struck a chord with me because, as many of you know, I love mail - the cards, letters, poems, stories, photos (and even a recipe or two) I have received over the course of the last four years are some of my most cherished possessions.

Most are from friends and family, but many have also been from people I have never met. I find this willingness to reach out deeply inspiring. Not to mention, the idea of having a thoughtful card delivered right to my chemo lounger beats needles and an IV any day.

Not Bad...

2010-03-14T16:52:00.001-07:00

Just a wee note to say that the extra preventative measures pre-infusion seem to be working.

Thus far, I am quite awake and have not thrown up (joy!)

I was a little dizzy earlier, but seem to be OK now.

Fingers crossed that this cycle of Bedamustine will continue to be smoother than the last.

Thank you for all the good vibes, notes, calls and thoughts - every single one helps me to feel stronger.

Rock n' Roll, Baby

2010-03-08T00:01:00.000-08:00

In the words of my good friend, Valerie (hi Val!), I definitely have my "mojo" back.

As a result, I've been going like gangbusters before my second cycle of Bendamustine this coming Thursday and Friday. I think I may have actually accomplished more in the past two weeks than in the last two months.

I really hope that this next recuperation period is a little shorter and my energy resumes again so I can continue having fun. It's been such a wonderfully creative couple of weeks.

In addition to the Callanish writing group last Tuesday (and this coming one), Ian and I also had a chance to get out and shoot some photos with our talented friends, Ryan and Nicol. We've started what we are referring to as our "Dorky Camera Club," or the DCC for short.

Here are just a few of the many photos we had fun shooting last Saturday...

By Ryan...it appears there is a light at the end of the tunnel

Olympic carnage aptly captured

By Nic...(some "dorks" shooting away)

Ah, more Olympic irony...love it

By Ian...(did I mention we are dorks with some really sweet cameras?)

Wires crossed...

By me...a self portrait

Puddle (how rare in Vancouver...)

Always...

Dork (me) shooting dork (Nic) shooting me...

Yesterday, I also had the pleasure of celebrating the birthday of one of my dear Callanish friends, also named Ian.

We really wanted to do something special for him, so we decided to rewrite the lyrics to a song by the very cheezy 80's glam band, Poison.

Yes, Poison.

Remember "Every Rose Has Its Thorn?" So do we. In fact, it has become somewhat of a tradition amongst the Young Adult group at Callanish.

Thus, with great help from my talented and beautiful singer/songwriter friend, Lydia, we were able to write and perform an alternate set of lyrics, "Celebrating the Day Ian Was Born" (and celebrate we did).

So, for you my friend, on your birthday and always...

"You're one in a million, the star of this sooooong, we're so glad to have you back where you belong (yeah we are)..."

Feelin' Groovy

2010-03-03T23:26:00.000-08:00

So, apparently, I have become one of those wackadoos who has lengthy and odd conversations with retail sales associates.

This past week, I have rebounded from the Bendamustine rather dramatically and have more energy than I've had in a very long time. Thus, I keep finding myself initiating conversations with virtually anyone who will listen, including the appliance salesman at Sears, the counter person at Orange Julius and a clerk at the Gap about the virtue of leggings.

I'm not quite sure if it is manic/hysterical energy or if this is just what feeling "normal" is like. Was I like this in the 'ol days before cancer?

The other night, when 2 am rolled around and I still wasn't asleep, I got out of bed, fired up my iPod and jumped on my mini tramp for half an hour listening to Enrique Iglesias.

Yes, I have Enrique on my iPod. Shame on me, I know.

My cough is also gone which is a major victory in itself.

Then, yesterday, the icing on the cake - we had the first session of our latest writing series at the Callanish Society, Callanish Writes IV.

I can't believe that we are beginning our third year of the program, and if yesterday's pieces from the writers are any indication of what is to come, then we may as well start publishing our collections weekly instead of at the end of the eight-week series.

Seriously, they were incredible, as always.

In April, I'll be taking the writing on the road, beginning a second series, this time on the North Shore, in conjunction with the Lynn Valley Literary Society.

I hope all this new-found energy continues to grow. Though, at this rate, I may drop dead from the sheer exhilaration of living.

Things are good.

Yay, They're F*ing Over!

2010-02-28T22:22:00.000-08:00

I'm afraid stoner mascot Crotchi or Mipa, or whatever the hell his name is, didn't survive. He was found dead on our patio late this evening.

If people can go this nuts over hockey, I can't imagine what they'll do when something important actually happens, say, ending starvation, preventing animal abuse or curing cancer.

Based on this afternoon's inane celebrations, that'll be some party.

Today we applauded the life of a beautiful friend, Emily, instead.

Clothing Crisis

2010-02-24T22:49:00.000-08:00

You've been there - bad hair, nothing to wear and a pressing engagement.

Such was my predicament on Tuesday.

Add to it my waning energy post-chemo.

Consequently, I made the rather bizarre decision to don my running gear. It does, after all, constitute an outfit of sorts.

Admittedly, I felt like a bit of a fraud sporting my Sauconys given that it's a challenge to even get up the stairs some days, but it did solve the problem of "getting ready."

The other irony was that once out the door, my runners snugly laced, I could not actually feel my feet.

I could feel the ground beneath them, but the neuropathy I currently have often gives me the weird sensation of feeling like my feet aren't actually attached to my body. It's difficult to explain.

Needless to say, I did not run in my running gear. I did however realize midway through the day that looking so sporty probably also made me look like an Olympic zealot.

Horror of horrors.

To make matters worse, my appetite being an issue as of late, I succumbed to a craving for a McDonald's milkshake on the way home.

I know, I know.

Just throw me in a bobsled and call me Judas.

Sitting, Waiting, Wishing

2010-02-22T22:13:00.000-08:00

Well, that was a hellish 10 days.

I finally feel like I'm coming out the other side.

Now that I know what to expect from the Bendamustine, we will hopefully be able to better mitigate some of the effects next time I have it.

The struggle over the last week and a half has been as much emotional as it has been physical. I have real difficulty accepting "impediments" to my mobility.

Rationally, ten days is not much in the "big" picture. However, when I don't know how big that picture is (and, really, none of us do), and something rather large threatens to make it smaller, I take the loss of those days being sick and tired as a personal affront.

I would like to find a way to be kinder and gentler to that part of myself that needs to rest. I'll let you know how that goes.

In the meantime, onward and upward.

Many of you will have already received an email from me about this, but if you haven't, below is information about a project we've been working on for some time.

Introducing...

I am currently building the website and, of course, would like to feature rescued and adopted pets, so please send along your photos if you have ever given a home to a furry (or feathered) friend.

Please include:

1. Pet's name (and yours if you are in the picture)

2. Month and year of adoption

Kindly send your photos to: info@projectblueblanket.org

Thanks, everyone. Please feel free to share this information.

I'll let you know when we officially launch!

Badda Bing

2010-02-20T07:45:00.000-08:00

So the Bendamustine took a turn and decided to go all Tony Soprano on me.

Either that, or last Friday's Olympic opening ceremony induced some serious nausea and vomiting - which is quite possible given the ostentatiousness of that, um, "display."

I ended up spending the next five or so days feeling seriously under the weather, and very tired. However, I don't want to worry any of my friends who may be starting this drug in the future as I think all the vomiting had a lot to do with my chronic cough.

Before the Bendamustine, I would quite often cough to the point of sounding like I was going to throw-up (which was charming for those around me), so my gag-reflex was already pretty sensitive and I think the slight nausea last week just pushed me over the edge.

Honestly, if it weren't for this cough, I could probably run around the seawall; instead, it exacerbated my side effects and landed me a week in bed.

Although, I guess it wasn't the worst week to have been holed-up. It kept me away from the Olympic zealots who seem to think riding a zip-line and getting "free" admission to the art gallery make the six billion dollar cost for these Games worth it.

Oh well, at least the Believers can now permanently gaze upon the Olympic "cauldron" erected on the waterfront through the attractive chain-link fence that surrounds it.

Maybe that Ottawa RCMP officer who was in town as part of our billion dollar Integrated Security Unit, but just got arrested for shoplifting, could live inside.

Oh well, it will all be over soon. The Believers will drink the Kool-aid and we'll finally call it a day in O-Town.

$4000 Day

2010-02-11T16:40:00.000-08:00

I knew I'd need a convoy to get to chemo this week...

OK, the police escort was not for me. I think the VPD was just flashing its brass this morning because they can.

Yesterday, we did manage to get out of the driveway, but not without driving around the aftermath of the torch relay. I've got to say, in addition to my previous complaints, that people really need to rethink this notion of dressing up like a Canadian flag.

Seriously, the red and white jackets, hats and mittens are not a good look.

I say this, Olympic Believers, because I care about you. I really don't want you to look like total dorks. But I guess it is too late for that.

Anyway, enough about the gong show.

More importantly, I had my first dose of Bendamustine today. Health Canada's approval came this week and the drug was shipped in a hurry. I will have the second infusion tomorrow.

All went without issue (the first time getting a new chemo drug is always a little nervy) and I didn't have any reaction. There are a number of possible side effects, but I'm hoping to avoid them. Fatigue and low counts are the primary ones.

Today's visit also had the added benefit of a visit from little Jazzy doing her pet therapy rounds.

Apparently, she only does her hair when she's working. It would appear from the above picture that I never do mine.

2010-02-09T06:07:00.000-08:00

By now you may have gathered that I am not a huge fan of the Olympics.

So, you can imagine how lucky I feel to have the torch relay coming down my street this Wednesday. I'm not even sure if I'll be able to get out of my driveway to go to my doctors' appointments.

Wait, I could take public transit, as the BCCA is urging chemo patients to do.

Hmm, let's see. What would that require?

Boarding one bus, transferring to another, catching the seabus, transferring to the skytrain, and then walking up hill for 15 minutes to the Cancer Agency.

Wait, make that 20. You know, tumors and all.

Total travel time: 2 hours each way.

It would make things so much easier if I could just thumb a lift and ride in the priority traffic lane reserved for IOC dignitaries and athletes. Perhaps we could share a Big Mac on the way over.

Just think, they could tell me how athletes scored 100,000 free condoms (14.6 each) from the Provincial Health Services Authority and I could tell them about the lack of funding for clinical trials in this province.

We could swap stories of their parties at the billion dollar Olympic Village and I could tell them about the delapidated palliative care ward at the BCCA.

We could, like, totally bond!

Actually, come to think of it, it would be much more fun to ride on the torch bearers' bus. Then I could enjoy the VANOC promotional video shown en route which includes footage from the 1936 Nazi propaganda film "Olympia."

Nothing like a little Sieg Heil to raise ones spirits.

Oh darn.

Apparently, after a news article appeared in the Globe and Mail last week, VANOC decided their decision to use and obscure the context of the footage was a bad one, so the promo has been "retired."

Until now, I have been reluctant to post the following excerpt from the Riefenstahl film, first, because it is disturbing; second, with the increasing level of security and violation of civil liberties in this city over the past few months, believe it or not, it actually seemed risky to have this blog pop up under a possible Google search for "Olympics" and "Nazis."

Sad, but true.

However, it also seems to me that having an idea of the history and origin of the torch relay and the five Olympic rings that brandish every surface of our city is important.

So, screw it. I'm sure they have chemo in jail.

Restroom Ergonomics

2010-02-08T09:25:00.000-08:00

Shame on me.

I had the audacity to enjoy a patch of blue sky this weekend and now I'm paying for it.

After walking Finnegan at Ambleside, then deciding to clear the leaves around our front entrance (it was looking pretty ghetto), I am now as stiff as Stephen Harper.

My hamstrings are so tight and sore that (and I know this is way too much information), when I go to sit on the toilet, I have to first grip the seat then lower myself down to lessen the impact.

Good grief.

I am not sure if this stiffness and muscle pain are a result of the SGN-35 or its absence, or if my muscles are just so atrophied that any exertion is going to have this effect.

I should clarify, however, that I have not been inactive, as I think this gives some of my friends who can't see me the wrong idea.

In the last week, I have walked half the seawall twice, had sushi and wandered around English Bay with Tanis and Vanessa, co-facilitated a writing retreat day, gone to yoga, had dinner on two separate nights with two beautiful Jen's, in addition to that bit 'o gardening and foray to the dog park.

If anything, I am guilty of overdoing it at times, but, as many of you know, when you've got energy, it is delicious. I never want to let it go to waste.

Thanks, Neil, for sharing this reminder.

Gabrielle passed away on January 29th, 2010.

And Now Back

2010-02-04T08:42:00.000-08:00

...to our original programming, after another foray onto my soapbox.

Seriously, I think blogging makes me tyrannical.

So back to Cancerland we go (until next time)...

The BCCA has agreed to administer and pay for the first two doses of Bendamustine. However, we are awaiting Health Canada's approval before the drug can be shipped. Let's just say, they better not f*ck around.

More kudos to Dr. C for doing this in record time. Hopefully, the drug will be shipped soon and I'll have the first dose by the end of next week. Thankfully, it is another infusion chemo so I don't have to worry about swallowing pills which is not my strong suit. The Bendamustine is given over two days and the infusions are only about 1/2 an hour each.

This drug is supposed to be minimal in its side effects, though it is suppressive, meaning my blood counts will drop between doses. So, I'll be back to being hypervigilant about avoiding crowds and the inevitable coughing person who always seems to sit next to me.

After two doses of the Bendamustine, which are 28 days apart, I will have another CT scan. Right now, I feel relatively well. I cough quite a bit and have some muscle soreness and joint stiffness, but nothing I can't handle.

There is one weird sensation I get from time to time - an incredibly intense, surging pain on the bottom of my feet. It literally takes my breath away but, thankfully, it only last a few seconds. Most likely this is a nerve issue caused by the SGN-35 and, hopefully, it and the neuropathy will start to lessen now that I am off the trial.

The most challenging thing lately has been processing the number of losses amongst my circle of friends. Due to the work I have been involved in and the interests I've pursued these past few years, this circle has grown to include many people who are living with cancer.

It can be incredibly overwhelming at times, heartbreaking, in fact, to watch people I love struggle. It definitely gives me a sense of the feeling of intense powerlessness friends and family have expressed with regard to my own illness.

Some time ago, I wrote myself the following note. As serendipity would have it, I found it yesterday. So, for all of us who struggle...

I am

I am writing to you now from this place of strength. From this place of heart-thumping, heart-held tenacity. I am writing to you now to remind you of the spirit that lives and breathes, rises and falls, deep within and beyond these walls of the body. That lives out there, amongst the woodland owls, the ancient oaks, the cherry blossom petals that dance as if ballerinas poised in a slow curtsy to the ground. I am writing to you now so, should you need me in the future, at a time when struggle overtakes you, to say this: You are the owls, the oak, the cherry blossoms. You always were and you always will be, no matter the body that holds you now.

Alpine Skier Finds Cure for Cancer

2010-02-03T08:26:00.000-08:00

Not likely, is it?

Thus, I have real difficulty understanding the logic behind statements such as: "The Olympics are a scam, but I support the athletes" or "It's a shame to punish the athletes who've trained so hard because you don't support the Games."

Don't get me wrong. I don't have a hate-on for lugers or speed skaters. Nor am I intent on "punishing" them. Truth be told, I don't really care about them one way or the other.

But let's be honest, they're not exactly advancing humanity, are they?

Athleticism - be it amateur or professional - is, largely, a personal pursuit.

Sure, an athlete may be part of a team or want to represent their country, but are these particularly altruistic endeavors?

Indeed, they may work hard for years on end, but I'm pretty sure most of us do. Moreover, how do soon-to-be Winter Olympians reconcile putting their dream of a gold metal ahead of the collective livelihood of 4.5 million British Columbians?

How do these athletes, who are presumably fairly health conscious, justify having McDonald's and Coca-Cola as their sponsors? I'm pretty sure I wouldn't take a pack of Marlboros to chemo no matter what they offered to pay me.

Now, I'm sure they're not bad people, but are Olympic athletes the citizens in society we should be championing, and if so, at what cost?

Pulling the Plug

2010-01-29T09:02:00.000-08:00

...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

2010-01-28T06:49:00.000-08:00

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

2010-01-26T09:04:00.000-08:00

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?

2010-01-25T10:35:00.000-08:00

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

2010-01-20T12:28:00.000-08:00

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

2010-01-18T16:41:00.001-08:00

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

2010-01-13T17:21:00.000-08:00

...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

2010-01-07T19:23:00.000-08:00

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.

2010-01-06T18:16:00.000-08:00

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

2010-01-04T06:40:00.000-08:00

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

2010-01-03T14:25:00.000-08:00

(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...

Let Them (and Me) Eat Cake

2009-12-24T11:33:00.001-08:00

...and that's exactly what I'm going to do tonight for my birthday.

I am demanding that we go to the Cheesecake Factory so I can eat cake for dinner (after we spend the afternoon at the pool). Sure beats last year when we had two feet of snow in Vancouver and I had to go for a PET scan.

Last night we went to a Christmas light display and made S'mores in the desert around a big bonfire...fun!

Now it's time to turn up the speakers and listen to one of my favorite songs ("The Great Defector" that's playing right now). I love the lyrics in this song, especially the line I love the colour of it all. I certainly do.

Happy birthday to me and happy holidays to you!

Heading South

2009-12-21T21:49:00.000-08:00

When in doubt, run for the border!

We're headed to the California desert tomorrow for what will hopefully be a reprieve from thinking about my options, or lack thereof.

With any luck, I should be pitching an umbrella in my drink by dinner instead of thinking about CTs, doctors and clinical trials.

Cin cin!

(check out the Lego dudes to the right...WTF?)

Double Sixes

2009-12-17T20:26:00.000-08:00

Well, your community and cross-country finger crossing did the trick...

I'm still on the trial!

It's a bit of a long story, but when all was said and done today, and after some insistence and negotiation, it was agreed that another dose of SGN-35 is my best option at this point.

While my latest set of scans shows some progression, it is not "global." Some areas have remained stable and a few have even decreased. There are also no new areas of disease.

Certainly, we have to keep a very close eye on things, but given that I feel relatively well and the progression seems slow (not to mention, there are no other treatment options available here), I believe that I have and continue to achieve some significant benefit with this drug.

However, it seems that some doctors are still not understanding that many of us who are living with refractory Hodgkin's are treating it as a chronic condition (what I wouldn't give to be stuck with chronic halitosis instead).

With that in mind, while "stable" disease would be great, a slow progression with minimal side effects is the next best thing and worth maintaining in the absence of anything better.

I wish I could just buy some peppermint mouthwash and call it a day.

Free Parking

2009-12-15T22:42:00.000-08:00

I have not yet passed Go, nor have I been sent directly to Jail.

I guess I am in the rather nebulous Free Parking zone.

My scan has come back showing more progression in the liver, abdomen and supraclavicular areas, but it is still not clear as to whether it is sizeable enough to warrant my being taken off the trial.

We will have a better idea after my appointment this Thursday.

Here's hoping I roll doubles and get the hell out of Dodge.

Passing Go

2009-12-10T16:45:00.000-08:00

I've been trying to decide what to write for days and still seem unable.

It has been an eventful few weeks, but I've also had plenty of down time, which is good. My body and mind need it. I also like the idea of making like the rest of the natural world, settling into the rhythm of the season with a gentle hibernation instead of lighting things up like a boxing-day shopper on crack.

In doing so, I am using my "off" and "no" buttons more frequently. After all, nobody is keeping track but me.

Oh, and ICBC.

They recently sent me a bill for a speeding ticket I got en route to Calgary in 1994.

Seriously, am I still on the hook for what I did when I was 18? I considered waiting until they phoned to see if they'd try and collect from someone on chemotherapy. There have to be better perks for flashing your cancer card than getting priority for the H1N1 vaccine. It's worth a try.

Tomorrow (Friday), I will be up bright and early to have my next CT scan before getting the go ahead to remain on the SGN-35 trial. By the way, SGN-35 was officially named several months ago as the very catchy Brentuximab Vedotin. Rolls off the tongue, don't you think?

If things remain "stable" or better, I'll get another check mark and infusion #11 next Friday. Scans will happen every eight weeks or so, and as long as I can keep getting these kind of results, I should be able to remain on the trial. If not, well, we'll cross that bridge if we get to it.

So, fingers will be crossed over the weekend as we wait for the results.

Feel free to cross a few of your own, or twelve!

Gratia

2009-11-25T22:51:00.000-08:00

Several months ago, I posted a blog entry about a lady I met who was knitting a prayer shawl. She was making it for her friend who was having chemo at the same time I was.

I am not religious per se, but loved the idea of creating something beautiful for someone while focussing on healing and good intentions for them. Well, apparently, my raving about this idea worked because, recently, a parcel arrived. Inside - my very own prayer shawl!

It is a beautiful combination of blues and purple, has a funky fringe and a cool ceramic button. What makes it even more special is that is was sent to me by someone I've never met.

It was such a kind gesture, one of so many I have been the recipient of these past few years. I am always especially touched by those who still manage to do special things after all this time.

A friend once described the feeling of loneliness that can come when the "soup days" are over - when the initial crisis of diagnosis is survived, and the months of treatment turn into years.

Fortunately, this feeling, in the few instances I've had it, is fleeting. Yet, when it does arrive, the silence can be deafening. I know now from experience that it is usually the kindness of others that helps me resurface.

For this, and for all of you who help me rise, time and time again, year after year, I am so grateful.

Introducing...

2009-11-19T08:51:00.000-08:00

Callanish Writes, Volume III

Little did we know (or maybe we did) when we began our first writing group at the Callanish Society, that almost two years and thousands of words later, we would be publishing our third book.

Each volume contains poems, stories and thoughts on living with cancer. Yet, while cancer is the common thread that brought us together to write, the content of the writing goes well beyond the disease.

To be in the company of this group is inspiring, to say the least. It also affirms my belief in and commitment to the power of the creative to heal, strengthen and enhance our lives. I see it happen, time and time again.

So, in the spring, I will be moving forward with plans to bring writing to people living with cancer on the North Shore with a new workshop,
Written Prescription.

The long-term goal is to make expressive arts more available in the community as a tool for healing during and after illness. I'm talking workshops, writers/artists/dancers at the bedside, in residence at hospitals and hospice; poetry in waiting rooms; music on the chemo ward; painting in the hallways...

and, ultimately, a permanent home (which I envision as “The Breathing Room”) which would offer studio space and workshops in the expressive arts free-of-charge to those who wish to include writing, art and music as they journey with illness.

Is it daunting to start planning and filling in the dates on next year's calendar given my situation?

Yes.

Does it make my heart sing?

Absolutely.

2009-11-13T00:34:00.000-08:00

Teresa was born 38 years ago today.

She is still with me everyday.

To you, my friend.

Two Cents

2009-11-06T00:10:00.000-08:00

Whew, I guess it's been a bit of a busy time lately.

I'm behind on virtually all forms of correspondence so, while it's rather rude on my part, it's usually a sign that I am feeling good and able to do the things I love.

This weekend, we're off to Whistler. Hopefully we won't choke on the stench of the upcoming Olympics. Not that I'm protesting, because protesting is a baaad word in Vancouver these days.

But who cares about civil liberties or a six billion dollar price tag? I like cuts to health care, education and social programs. I like seeing homeless people on the Downtown East Side, the poorest neighborhood in Canada, tough it out in the cold weather (oh wait, we have a forced-shelter bill to handle that).

Oh well, as long as the bobsledders are tucked into their beds at night in the billion dollar Olympic Village, I can rest easy.

What about you?

Spoooooky

2009-10-31T07:12:00.000-07:00

I don't know why this breaks me up every time I watch it.

Perhaps I recognize the look of canine despair, the one Finn gets when we put antlers on him at Christmas.

I'm sure they're all thinking: My parents are total dorks.

Brush Strokes

2009-10-30T10:40:00.000-07:00

Well, I'm here, so I obviously didn't paint myself into a corner.

Last weekend in Seattle was wonderful. The painting workshop was really interesting, but challenging at times.

On the last day, I was having quite a bit of pain in my back and was really pissed off about it. I was hurling all sorts of threats and choice words at the Hodgkin's (in my head) which culminated with tears at lunch.

Recognizing this as an opportunity to work with the energy, I went back and got myself set up with a huge canvas, grabbed the biggest brush I could find and got to work.

First, I painted a spine and vertebrae in a flesh tone, then grabbed another big brush and started stamping the area of my discomfort (on the canvas) with big, bloody-red blotches, all the while thinking, take that motherf*cker!

I carried on well from there with lots of black and more red and, interestingly, my pain subsided by the time I was finished.

Hmm, I'm thinking I may have to repaint the house.

Happy Friday

2009-10-23T08:25:00.000-07:00

(Again, you may want to turn off my ipod on the lower right side of the page while you watch this).

This is adorable Angelo the Lamb who was recently rescued and is now living at The Farm Sanctuary. I think he will make you smile.

Don't you dig his orange sweater?

Now off to Seattle to paint, paint, paint!

Move Over, Monet

2009-10-22T07:02:00.000-07:00

(You may want to pause my ipod on the right-hand side if you're watching this):

I am excited.

This weekend my mom and I are heading south to do The Painting Experience in Seattle. I'm not new to painting, but I've always found it frustrating not to be able to translate what is in my head onto the canvas. I am much more comfortable with the written word.

The Painting Experience has been around for a long time and appeals to me because it explores painting in much the same way I do writing in my workshops. It is about process, not product.

It is not about judging or critiquing your work, but nurturing the desire within you to create, whether that be something beautiful, dark, sad or totally meaningless. My mom and I have agreed to work on opposite sides of the room so we don't inhibit or embarrass each other if we are suddenly compelled to paint naked people.

In other news, today is Ian's birthday. He began celebrations early when I arrived home last night after dinner with Jenny, Scott, Ela and Zoe (thanks again!) and saw garbage all over our carport. We appeared to be the dinner hosts for some crafty raccoons. After we cleaned up their leftovers, we went to bed and woke up at four in the morning to the sound of our garbage can banging around.

Ian got up to scare them away and I stood and waited to see them pass by the bedroom window. It was totally dark, so when I saw the first one lumbering along, I couldn't really tell how big it was. That was until it stopped in front of the window and looked at me.

My, what big teeth you have, Mr. Raccoon.

Wait, you're not a raccoon...

You're an f*ing bear!

And you're staring at me in the dark.

Gasp.

Needless to say, I shut the curtains very quickly as I thought, at this rate, he's likely to break through the window, eat me, then bust open our refrigerator.

Better hide the birthday cake.

The View From Here

2009-10-20T12:03:00.000-07:00

Without retouching...

Lately, what comes more into focus is the importance of defining the values that are important to me and the goals I have for this lifetime, however long.

When it comes down to it, they are not lofty or complex. In addition, of course, to meaningful and loving relationships with my family and friends, it really boils down to the following:

I want to be kind;

I want to encourage and support the creative process in myself and others;

I want to help animals in need.

Of course, I want to laugh, travel, end starvation, complain bitterly about the upcoming Olympics, walk my dog and kiss my husband. I want to do yoga, be sarcastic, eat good food, cure cancer, go on road trips and bring about world peace.

However, I decided to make the list a little more manageable to increase the likelihood of getting everything done. Lists make me anxious. I actually make lists of things I've already accomplished just so I can have the satisfaction of crossing those things off. Yep, total nutter, I know.

Hmm...

To do:

See therapist.

Soon.

Two Thumbs Up

2009-10-15T19:56:00.000-07:00

I have the go-head to continue on the SGN-35 trial (insert sigh of relief here).

My initial PET/CT results showed, again, a slightly "mixed picture", but overall the impression was stable. I will have my 8th infusion tomorrow.

While we still have to wait for the more specific details of the CT, it is thought that any increases in disease activity are not significant enough to take me off the trial. If I have a 50% increase in the size of even one area, we have to move to plan B (more like plan J at this point) so we will be watching things very carefully.

While I was very relieved to get this news, it is still, obviously, difficult to jump for joy. Still, it's good enough. It almost seems as though the Hodgkin's is trying to decide what to do right now, whether to wait out the onslaught of the SGN-35 or take a hike. Hmm. Here are your boots, mother f*cker...now get lost.

Pardon the salt on that last cracker.

Now, back to me...

Today, (drum roll please), I also "officially" cracked 100 with my hemoglobin - finally. To quote the 80s band, The Parachute Club, (and I'm not sure why I can)...

Rise up, rise up
Oh rise and show your power
Rise up, rise up
Were dancing into the sun
Rise up, rise up
It's time for celebration
Rise up, rise up
Spirits time has come

Wow. Even I am dumbfounded by that sudden outburst of cheeziness.

Well, That Was Weird

2009-10-11T09:06:00.000-07:00

As some of you well know, prior to having a PET scan, it is necessary to "relax" or lay still for forty-five minutes while the radioactive tracer makes its way through your body locating areas of disease activity.

At the Cancer Agency, they have an assortment of CDs on hand that you can choose from to achieve your mellow. New age and instrumentals are largely represented and I usually go with a little Orinoco Flow to put me to sleep. This time, however, I noticed a new title, Campfire Classics, so decided to shake it up a little.

It turns out it was a burned CD so the volume of the songs was somewhat inconsistent. I started off with Pink Floyd - appropriately "Comfortably Numb" - which seemed to do the trick. I was out like a light.

However, forty minutes later, I woke with drool on my pillow and Lynyrd Skynyrd's "Free Bird" blasting away at full volume. It was at the part of the song where the boys just give 'er and, in my haze, I hadn't yet managed to turn down the volume. The technician came in and said, "Well, well, party down!"

Yes, my brother, party down.

He was probably surprised the whole room didn't wreak of pot when he opened the door.

Sensing he had a "wild one" here, he asked if I'd like to continue the party in the scanning room.

Hell yeah!

Though, I must say, it was a tad weird to be having a scan that is intent on finding cancer in my body while listening to "Dust in the Wind."

Next time, I think I'll stick to Enya.

Lucky 13

2009-10-09T13:45:00.000-07:00

So, today I will have my thirteenth PET scan. Here's hoping it's a charm.

I had to start fasting at 10:30 this morning so at least I got to eat breakfast, but now I can't eat until 7pm. Grrr, I likes me food!

It being the Friday before a holiday, I have to wait it out over the long weekend for my results. However, I have already arranged with my doctor to speak Tuesday morning. Anxious? Just a tad.

While I try not to give too much heed to each scan, it is hard not to, particularly at this point in my treatment. One minute you're on the trial, the next you're off and trying to figure out what your options are, trying to figure out how hope and acceptance can coexist.

Jordan

2009-10-05T21:48:00.000-07:00

My parents lost our family dog, Jordan, yesterday.

For the last twelve years, he's played a big role in our lives, and a loud one.

You see, Jordan suffered from an anxiety disorder, as in I-want-your-toast-anxiety, give-me-your-carrots-anxiety, and you-are-having-a-conversation-and-not-paying-attention-to-me-anxiety. When in these situations, he would whine faintly, then louder, reaching a full-bark crescendo until you gave in.

This was especially enjoyable when riding in the car. For years my parents have taken road trips with Jordi whining over their shoulders from the back seat. No amount of rawhide or rescue remedy would turn down the volume, but he loved to travel so they couldn't bear to leave him at home.

They brought Jordan home more than a dozen years ago from the SPCA after my mom saw an ad describing his year-long stay in the shelter. We called him our "junkyard dog" because no amount of grooming or primping could make him look otherwise. Yet he had deep, dark, soulful eyes and adorable little triangle ears that could hear the sound of the biscuit jar half a block away.

Recently, we discovered he had hemangiosarcoma (a form of cancer somewhat common in dogs) that could not be treated. He did have some chemotherapy to make him more comfortable, but yesterday his gentle heart gave out.

Long may you run, sweet boy.

2009-10-01T20:25:00.000-07:00

for Adrienne, Alison and family

A Parable of Immortality
by Henry Van Dyke

I am standing upon the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch until at last she hangs
like a speck of white cloud
just where the sea and sky come down to mingle with each other.
Then someone at my side says,
"There she goes"
Gone where?
Gone from my sight . . . that is all.
She is just as large in mast and hull and spar
as she was when she left my side
and just as able to bear her load of living freight
to the place of destination.
Her diminished size is in me, not in her.
And just at the moment
when someone at my side says,
"There she goes"
there are other eyes watching her coming . . .
and other voices ready to take up the glad shout . . .
"Here she comes"

Alberta Road Trip Continued

2009-09-24T22:31:00.000-07:00

Not to give the impression that Alberta is all grain elevators, fields and rusty vehicles, but I guess that's what I enjoy shooting...

I'm afraid I can't explain the random prairie refrigerator.

Almost

2009-09-24T21:04:00.000-07:00

I had my doctor's visit today and my hemoglobin was all Gretzky - in other words 99, baby!

I'll crack a hundred yet, damn it.

In the meantime, I thought I'd post a few more road trip pictures. This first series is of the usual point-and-click variety.

If I lived there, I'd probably find the following extremely tacky and complain to my municipality about them but, because I was just visiting, I found these ten-foot beer cans hanging out in various farmers' fields novel. So much so, that I had to get my picture taken with one (and because Grasshopper is one of Alberta's best exports, in my opinion).

At Roxann and Jeremy's in Okotoks. I wanted to post the picture I took of Roxann giving me a Wi Fit demonstration whilst drinking cocktails, but she threatened to hurt me.

I met up with my friend Lynette from uni for a wonderful lunch in Nanton. We were having wind issues while taking this picture. Can you tell?

And now a few obligatory scenery pics...those Rocky Mountains never cease to impress (me anyway).

Next time I'll post my "artistic licence" pictures shot on our digital SLR. I have rediscovered my love of photography which I studied a bit in university, but let go of over these past few years (hence the cheezy old Nickelback song - which I like, thank you very much. They are from Alberta so it seemed only appropriate).

Home Again

2009-09-23T22:57:00.000-07:00

With Alberta behind us...

(and a brief stop in Vernon), we're back.

Now I'm off to bed as I have to be at the Cancer Agency early tomorrow morning for labs and my pre-treatment doctor's appointment. This is the second one in a row that I will be going to by myself as there has really been nothing to report lately. Last time, when I walked into the appointment and my doctor saw I was alone, she looked surprised and asked, "No entourage?"

We have always felt it important to "travel in a pack" so to speak, first, so that there is always another set of eyes and ears and, second, to provide back up/handle any issues that arise.

It has served us very well, especially at times when I have been catatonic from chemo or had some wing-nut practitioner (of which there have been many). However, as I'm currently feeling strong and quite myself, I'm going solo. I am also in the hands of a very competent trial nurse who, unlike the one I had in Montreal, isn't likely to kill or traumatize me.

On Friday I will have my seventh infusion of SGN-35 with entourage (just in case I have a reaction, which hasn't happened so far). This is the last dose before I have my next set of tests. A combined CT/PET scan on October 9th will determine whether I can continue on the trial.

I sure hope so.

Road Trippin'

2009-09-19T18:22:00.000-07:00

...in Southern Alberta

Gotta love a happy barn (on Highway 2 south of Calgary).

Rise Again

2009-09-15T11:03:00.000-07:00

I don't pray, although I'm pretty sure I did just now, so I'm calling once again on the power of collective thought and intention.

Please keep Adrienne, a friend who has been battling Hodgkin's for more than a decade, and with incredible strength for the past three weeks in the hospital, in your thoughts and in your hearts.

Her liver function and blood counts are struggling to keep up with her.

I am trying to focus in whatever way I can on seeing them rise again.

Please join me.

End of Summer Blues

2009-09-13T20:33:00.000-07:00

Hello.

Well it's about time you checked in.

Actually, it's me who's been playing hooky, but I felt like being passive-aggressive.

I must say, it's been difficult to let go of the summer - the weather, trips, visits and feeling so good. Not that there's any reason why this won't continue, and I do love the changing of the seasons, but I guess I'm suffering a wee bit o' funk. Hence the song on my new playlist to your right.

I've been wanting a soundtrack-thingy on my blog for ages, but every time I tried to enter the code on my seriously old blogger template, it would screw up everything else. Anyway, I finally figured it out and can now add songs to suit my mood at the time of writing a blog entry.

Hopefully it doesn't drive you nuts and my apologies to anyone working in an office who forgot to turn their speakers down. I'll try not to be too embarrassing with my song selections, but you never know. It may be an Enrique Iglesias kind of day.

So here's what was up before I got down...

Stamina. It feels like it's getting better all the time and I've been able to enjoy longer and longer walks and hikes. It's got me thinking of another marathon. This one was taken on a hike with the boys up Lynn Creek.

Visiting with Catherine from Edmonton, one of my co-conspirators in journalism school. She's marrying the lovely Stefan in December on the Mayan Riviera. I'm still hoping to go and I'm sure they won't mind if I crash in their honeymoon suite.

Two of my dearest friends, Josefine and Jenny at Ambleside in West Vancouver (Lions Gate Bridge in background)

Ditching the Cancer Agency after my last treatment to start our road trip to Seattle. Yes, I know...I'm an evil Starbucks junkie, but I just had chemo for god's sake.

One of the highlights of our trip was the opportunity to meet fellow Hodgkin's all-star, Chris, and his lovely girlfriend Jackie. Chris began the SGN-35 trial this summer in Detroit after undergoing a tandem autologous transplant in Seattle. He writes a great blog and, as you can imagine, there being so few of us refractory/clinical trial kids, it's wonderful to meet each other.

After lunch at the Honey Hole, Chris and Jackie were kind enough to give us a tour of some funky neighborhoods in Seattle including this one with a great vista. It was a tad windy, hence my bad hair.

The Fremont Troll under the Aurora Bridge. Down in front, dude!

After visiting the Troll, we headed to the Bumbershoot Festival in downtown Seattle. I decided to get some mehndi done, but forgot to factor in "drying time." It was a challenge to work my way through the crowd trying not to smudge. It didn't stop me from eating half a pound of fudge though.

Before I smudged...

And...the finale - Michael Franti and Spearhead. With their shows, it's always a little like being at a Wiggles concert for adults (lots of jumping around and audience participation). But we were all for that and it was the perfect way to end the summer.

Peace and love, my friends.

Write On

2009-09-01T23:29:00.000-07:00

So the last week has been filled with good things around here: sunshine, friends and family. Today was also the first session of the third writing series I am co-facilitating at the Callanish Society. Here's my mom as a little girl on the flyer I made.

As always, I was moved to tears to sit in the company of these friends exploring the inner-most regions of the heart and am humbled to be part of this work. It has inspired me to develop a similar workshop on the North Shore which is set to begin in October.

On a less moving note, but "moving" nonetheless, look what's been going on in our backyard...(my toes)

We're not too upset that our old neighbors have moved and the house is being demolished. Last year they cut down a large tree in our yard while we were in Montreal trying to get through my last clinical trial. Is it evil to be happy they've moved on?

They probably don't care, but I'd like to think their old house being demolished is karma. But then what does that say about my past transgressions? Here's cancer, kid. You really f*ed up!

Enough is Enough

2009-08-30T21:39:00.000-07:00

Anger is what I feel, and heartbreak, when I hear of yet another friend struggling with the realities of this disease.

Adrienne, an integral part of the online Hodgkin's community (along with her incredible mom, Alison), is currently in the hospital giving her all so that she may soon return home to her family, her studies and her puppies.

Please join us in sending the family your thoughts, intentions and wishes, and in visualizing Adrienne's full recovery.

We are also keeping Kathy in Ottawa close to our hearts. We think of you and Eric so often. To read about this thoughtful young man and his legacy, click here.

Good Eats

2009-08-27T06:27:00.000-07:00

Another by-product of feeling great on the SGN trial has been the energy (and interest) to cook again. We have been trying out some new recipes from Clean Eating magazine which use a lot of ingredients I like. Though, I think I secretly want to be a food stylist. I like the "plating" part better than the actual cooking.

Halibut and Cabbage "Tacos" on Organic Sprouted Wheat Tortillas

Coconut Lime Chicken with (too much) Citrus Mango Salsa

Grilled Steak with Green Beans and Yams

Turkey and Cilantro Sandwich with Heirloom Tomato Salad

Caprese Pasta with Toasted (aka burnt) Pine Nuts and Basil

They're not all winners, but it's been fun trying out the recipes. This week we also test drove Raspberry Mint Mojitos on Catherine and Stefan who gave them the thumbs up (we've been making them since you guys left). It'd be a cryin' shame for all that mint to go to waste.

Summertime's Fine

2009-08-25T23:08:00.000-07:00

I can't tell you how nice it has been this summer to have the energy to do the things I love.

During the summer of 2006, I was undergoing intense chemo and preparing for my stem cell transplant. The summer of 2007, I found out the transplant had failed and the disease had spread to my hip bone and liver.

Last summer, 2008, we were living in Montreal to give the MGCD0103 clinical trial a shot. By August, I was pretty beat up from the drug - itching insanely, down 15 pounds and horribly sleep deprived.

By the end of the month, I had been booted from the trial when it was discovered that the Hodgkin's had progressed and the only option available to me in Montreal was to have another transplant, this time a tandem auto/allo.

Given my extremely compromised health at that time and a transplant survival rate in the single digits, I wasn't feeling too optimistic about what lay ahead. When I reflect back, I really don't know how we got through any of it.

Well, actually, I do.

I am extremely lucky to have an incredible family and support system. I think the most important aspect of this support has been an underlying steadiness; we don't tend to freak out. Instead, the ol' WW II slogan comes into effect - keep calm and carry on.

Albeit, living with cancer as a "chronic" disease is hardly normal and it's the last thing I want to be doing. The worry and fear never really go away, but they do take a back seat once in awhile when I am feeling this good.

For that, I am so grateful.

***

My keep calm and carry on poster boy (hanging out in Josefine's parents' garden)

Idabel Lake where we spent a week in July

The lodge

Canoeing

Solstice daisies

Finn after the latest skunk incident (Ian wanted me to point out that he wouldn't normally wear sandals with socks, but the situation required immediate action)

Enjoying a brew at the Sam Roberts' show at Deer Lake Park. He opened with Detroit '67 (Chris C in the D, I'm sure you can groove on this one!) which got the crowd going right off the top.

Ian and Paul pleased with themselves for being ID'd at the show

Drinking age verified!

I don't know why imbibed people feel compelled to do this

Ahh, good times!

And the winner is...

2009-08-18T20:31:00.000-07:00

Nancy from Wisconsin!

Hi Nancy!

Thanks for letting me know you were my 20,000th visitor. You are now famous in this corner of the dubya dubya dubya!

Nancy and I have never actually met but we frequent the same online lymphoma message board. I don't know what it means in the big picture, but maybe you should go out and buy a lottery ticket! Thanks again to everyone for taking the time to visit my blog these past three years. They've been a bit of a doozy.

Far less exciting this week is the result of my CT scan (after four cycles of SGN-35) which is still showing a "mixed" picture. Based on the reduction of disease activity reported on my recent PET scan, we were a bit surprised that the CT didn't show significantly smaller areas of disease. However, stable or better is enough to keep me on the trial and as long as I don't have any major side effects, I'll take it.

I feel fortunate (relatively speaking) that, so far, the effects of the drug have been minimal. I know several people on the trial who are experiencing some difficult symptoms, particularly neuropathy (pain and/or numbness) in the extremities.

I did develop a hive-like rash sometime between cycles two and three, but, after a visit to the dermatologist, a course of antihistamines seems to be doing the trick. Still, it would have been nice not to have spent the summer looking like I have scabies.

Aside from that and the odd narcoleptic episode for about 36 hours after my infusion, I continue to feel great. Still haven't cracked 100 with the hemoglobin though. Ninety-six and holding last week, god damn it.

Win Big!

2009-08-12T23:38:00.000-07:00

OK, not really, but this week or next, my blog will reach 20,000 hits and YOU could be the one!

The one what, you ask? Well, my 20,000th visitor is all! Not that that likely means much to you, but I'm pretty flattered that people take time out of their busy lives to see how I am doing. I certainly didn't expect some of you to have to do it for three years. Sorry about that.

Anyway, while visiting my blog during this next week, be sure to scroll down to the bottom of the page to see what number visitor you are. If you're number 20,000, please let me know at: kirstennotkristen@hotmail.com.

You could be fleetingly famous (and, Mom, no repeat visits allowed).

Cautious Optimism

2009-08-11T22:15:00.000-07:00

First, the really good news...

The preliminary results of yesterday's PET/CT scan have come back "favorable," meaning, I have responded to the SGN-35!

I won't have all the details until my appointment on Thursday, but my wonderful trial nurse, Cathy, was kind enough to phone just hours after my scan. The PET summary stated that my SUV levels (measure of disease activity) have decreased as has the nodal involvement in my body.

How much so, we aren't yet sure as we are still waiting on the CT report; however, this early information leads us to believe that I will be able to continue on the trial and, hopefully, keep getting medieval on the Hodgkin's.

Woohoo!

As if that weren't exciting enough, yesterday also included being detained at the U.S. border.

I should know better, but I completely forgot that I'm somewhat "radioactive" after my scans, so when we approached the border at Point Roberts, the guard came out and asked if "anyone had received medical treatment in the vehicle."

Ian thought he literally meant "in the vehicle" and promptly said no.

With a raised eyebrow the guard again asked if we were "indeed sure that no one in the vehicle had received medical care."

Yes, we now declared emphatically, but by this time he was already flagging our vehicle to be inspected.

To make yet another long story short, after going inside the customs office, I proceeded to continuously set off the security detector. An automated voice kept warning:

Gamma alert! Gamma alert!

Then various guards kept trying to "read me" with a hand-held detector but, apparently, "Lou" hadn't charged the first one, so it took about three goes before they realized they needed another one.

When "Bob" initially pointed it at me, I had the wherewithal to ask why exactly he was aiming what appeared to be a taser my way. He assured me it was harmless and that they just needed to confirm the reading with "Washington" before they let me go.

Um, ok.

In the meantime, you guessed it...

Gamma alert! Gamma alert!

At one point, they considered putting me in an empty office with the door closed to make the automated voice shut-up, but once it was ascertained that I wasn't a threat to homeland security, the guards let me sit in the regular waiting area.

An hour and a half later, "Washington" finally gave the call and we were free to go. So lucky Ian got to hop back in the Jeep with Nuclear Nellie and off we went.

Good grief, you can probably see me from Mars, but if PET scan number twelve's a charm, I'll take it.

Smooth Sailing

2009-07-25T08:22:00.000-07:00

So I had my treatment yesterday without incident.

My nurse was efficient, if somewhat boring. No hijnks or reprimands. We did, however, spot Nurse Ratched. She was bawling out an orderly telling him he "SHOULD HAVE" done something this way rather than that way. That woman needs to be straight-jacketed. I'm not sure what I'll do when I get her again, which I'm sure is inevitable. Maybe I'll tell her she...SHOULD CALM THE F*CK DOWN.

In other news, we're off to the Okanagan on Sunday to spend some time on Idabel Lake. As I pack, I realize I'm getting increasingly weird.

Anything to declare m'am?

Um, just some cauliflower sauteed in tumeric for its tumour-fighting qualities, a dozen "energy" muffins made with spelt flour (because gluten makes me feel bloated), ten stewed prunes to accompany my probiotic yogurt, oh, and one wine glass because I don't like drinking out of plastic ones.

Yep, total nutter.

Round Four

2009-07-23T20:10:00.000-07:00

Man, I just can't crack 100.

My blood work remains stable but I still haven't been able to push my hemoglobin into the triple digits. It's been holding steady at 97 though, so I'm not complaining. Well, actually I am, but just ignore me.

Tomorrow, I will have my fourth dose of SGN-35, the last cycle before I have my next PET scan on August 10th. As my CT scan after cycle 2 was "mixed," I am very interested to find out where the disease is at in terms of activity which is what the PET scan will measure.

Of course, I am very hopeful that the scan will, by now, indicate significant improvement. I can then continue on the trial which has, thus far, given me very few side effects.

While the wait for it was long, I'm so glad I've been able to finally have a go with this drug and experience feeling so much better. I have several friends out there who are anxiously waiting for access to SGN-35 and I want the show on the road pronto for them too.

Fingers crossed, guys.

Round and Round

2009-07-16T10:46:00.000-07:00

Well, that was interesting.

Tonight I spent the evening drawing circles.

Circles, you ask?

Yes, circles, the round kind.

My mom and I went to a workshop called "A Circle for Difficult Times" led by a Zen artist and teacher visiting Vancouver. While I appreciated the meditative quality of spending several hours drawing circles, the idea of taking fastidious notes on "circle making" (which some were inclined to do) kept giving me the giggles.

The tranquility of the evening did, however, seem an appropriate ending to a day that began with a lymphatic massage, followed by a sound meditation and healing-touch session (during which I drooled on the pillow), followed by a nap (during which I drooled on the pillow again).

Clearly, I am not getting enough rest.

Lately

2009-07-14T07:13:00.000-07:00

Thought I'd post a few recent pics rather than writing...

Guess where this is...

Looking south from Point Roberts toward the San Juan Islands

This is the new marine park there at Lily Point

Now we're on the west side of PR looking at Lily Point in the distance. If you click on the picture and look to the right, you can see a very faint Mount Baker on the horizon.

Ian trying to photograph a very unphotogenic Finnegan.

Me trying to be creative...

Our new project...attempting to restore a '92 Boston Whaler.

Pressure washing is very satisfying...look at all that dirt!

All clean...

Making s'mores. I dropped about three marshmallows into the fire.

Finnegan unhappy to be stuck on the log, but he kept eating dead starfish so we had to do something.

Writing on Bowen Island.

Ian on our half-finished deck.

Our new roofless shed (we really need to complete something).

Speaking at the Callanish Garden party. There were no pictures where my mouth didn't look weird.

Hangin'

2009-07-12T21:02:00.001-07:00

Well, after sulking briefly over my underwhelming CT results, I got back to the business of enjoying the return of my energy. How wonderful it is, too, to not be itching like a kid with head lice.

Last Friday, my third dose of SGN-35 was delivered without incident by a sane nurse who didn't feel the need to chastise me. She also got the IV in my hand without my feeling so much as a pin prick, which proves how important competency is. Nurse Ratched, you may want to take note.

During my infusion, I began talking to a woman beside me named Ruth Anne. She was busy knitting a six-foot Prayer Shawl for her friend who was also there receiving treatment. I'd never heard of the idea before, so she told me the history behind the project.

Now undertaken by people of many different faiths and beliefs, the shawl maker begins with prayers and blessings for the recipient and holds these intentions throughout the creation of the shawl. Upon completion, a final blessing is offered before the shawl is sent on its way to "wrap, enfold, comfort, cover, and give solace" to its recipient.

What a beautiful concept.

On We Go

2009-07-03T00:24:00.000-07:00

Ok, so, I still don't have a complete picture of what my recent CT revealed as all my go-to people are away.

However, the results are good enough to continue on the trial and, really, at this point, that's all I care about. I will have my third dose of SGN-35 this afternoon.

Apparently, in terms of the size of the various areas of disease, there were only minor changes, some slight increases and some decreases. Initially, I felt disappointed with these results as it was really hard to imagine that such a dramatic improvement in my physical symptoms would not coincide with an equally significant decrease in disease.

Regardless, these are still early days so I like to think that the Hodgkin's is indeed suffering a slow and painful death...(followed by a not-so-pleasant descent into Hell).

Shame about them flames.

Stir It Up

2009-06-29T13:41:00.000-07:00

Aah, we're just sitting on the newly rebuilt patio of Caffe Capanna in Point Roberts enjoying lunch and lattes.

While Point Roberts itself is usually somewhere we come to get away from it all, sometimes it's nice to check in with "civilization" via fee wireless once in a while. I also wanted to write a quick post about my scan results.

While I don't have the full picture yet, I do know that things are at least stable. I wasn't able to connect with my doctor on Friday who, very courteously, phoned to discuss the results with me. However, I was on Bowen Island in Jan's gorgeous "Secret Garden" with many dear friends to write for the day. There was no way, results or not, that I was going to interrupt that.

So, for now, I just have an email to go by (as I'd forgotten to empty my voicemail box), but will be seeing the doctor on Thursday. I could phone to get more information but, quite frankly, I'd rather just enjoy the next few days unencumbered by the details and in a state of pure summer bliss.

Happy Hour has officially been reinstated. See you on the patio.

The Week Ahead

2009-06-24T09:23:00.000-07:00

Well, it is scan time tomorrow, the first since beginning the SGN-35 trial.

I am very curious as to what we will see, but am also not wanting anything less than a significant reduction in disease to "quash my vibe, man."

I have been feeling so good that the results are almost irrelevant, except that they aren't. Tomorrow's test is, however, only a CT, not a PET scan, so it won't measure actual disease activity, just size. I'm going for gold, so we'll see.

I'm also interested to know what my hemoglobin is. Having had disease-related anemia for years now, my hemoglobin has been hovering in the low to mid 80's the past few months and rarely peaks over 90. A few weeks ago, after beginning the trial, it was 94. The normal range is 120-150 and I simply can't imagine what I'd be like if it got that high. Really annoying, probably!

It will take a few days for the scan results to become available, so I will likely have to wait it out over the weekend. No matter, as on Friday we have another wonderful day of writing planned for Callanish, this time in my friend Jan's garden on Bowen Island.

Speaking of which, the Callanish Society website has just been beautifully redesigned by my friend Allison. Click here to check it out (and, yes, that is me, the giant wood nymph writing in the forest on the home page slide show). We plan to get a writing page up soon.

Beyond Friday, we will be heading down to Point Roberts again on the weekend as Ian officially begins his summer holidays (and I continue mine).

Aah, sweet freedom!

Sunshine, Swedes and Solstice

2009-06-22T00:04:00.000-07:00

Summer is upon us!

Although, you wouldn't know it judging by the weather in Vancouver the last few days. I returned to clouds and showers after a great time out on Kalamalka Lake Saturday and wonderful visits with my sister, in-laws, and Josefine, Chad and Erik.

I also had a chance to celebrate Swedish Midsummer's Eve in Armstrong at Josefine's parents. Notice the rainbow (always a good sign...)

The table is set for pickled herring and Schnapps...Skol!

This is right before we danced around the, um, maypole...

I'm still feeling great and have loads of energy. I have a CT scan scheduled for Thursday that will indicate the current state of affairs with my body; however, I don't want to attribute too much importance to the results (unless, of course, I am in remission).

Whatever is happening, things are good.

Vacation

2009-06-16T23:00:00.000-07:00

Being back in the Land of the Living, I've barely had time to write.

It seems pretty clear that the SGN-35 is doing something pretty fantastic as I cannot remember when I last felt this good. The only side effect I've noticed is fatigue for about 24 hours post dosage (which I like to attribute to some ass-kicking going on in there).

Nonetheless, I got up at 5:30 this morning, full of energy and ready to take the dog for a walk. Then I remembered that Finnegan isn't actually here, but at my parents for a few days while our deck is being renovated. So while I may be losing my marbles, at least I'm full of beans.

Wanting to take advantage of this new found energy, I'm off to the Okanagan tomorrow for a few days to visit family and friends. I hear it's been above 30 degrees there lately so we hope to get out on the boat on Saturday. However, I've already been warned not to over-do it. Does that mean no slalom on the water skis? Just kidding, mom. Sort of.

One Flew Over the Chemo Nest

2009-06-11T23:52:00.000-07:00

OK - I guess we were due.

With all the incredible care I've been receiving lately, we knew that sooner or later we'd find ourselves confronted with a situation of some sort, you know, an angry administrator, a hopeless doctor...

Today's incident involved a nutter nurse who proved to be mildly disturbing, but oddly entertaining.

When we arrived at the Agency for my second infusion of SGN 35, we were met by one who seemed a bit flustered. Once I was settled and she began combing my arm for a good vein to place the IV, she said she hadn't decided which one she wanted to use but that whichever one it was, "it needed to work for her."

This should have been my first clue because, actually, lady, it needs to work for me.

However, feeling especially cheerful due to my new found energy, I decided to let it ride with a mere raised eyebrow cast toward my mom whose eyebrow was also on the rise.

When the nurse did finally find a vein that pleased her, it was an unusually painful poke (lots of digging around) to get the IV in. My mom, unsure at this point how I was feeling about the way things were going, asked me if it was OK.

I just don't like IV's in my hand, I said.

At that point, the nurse abruptly looked up from my arm and in a hysterical voice (and in true blame-the-patient-style) said, You should have said something. Why didn't you say anything? I can put it here or here or here. WHY DIDN'T YOU SAY SOMETHING?? YOU SHOULD HAVE SAID SOMETHING!!

I am using all caps here because she was that emphatic.

Just when I think I finally have all my strategies in place for managing difficult or surly practitioners, I was completely bewildered by this one so I just stared at her with a blank expression. This seemed to unnerve her because she then said, You're allowed to speak up you know.

Uh, lady, do you have any idea who you're talking to?

So, I smiled and said, Yes - I know.

You may be reading this and thinking, What's the big deal? However, many of you also know that once the ol' Spidey senses start tingling about a nurse or doctor's inappropriate attitude, you're usually right. So, we shouldn't have been surprised by what followed.

To make a long story short(er), we (there was another woman sitting beside me listening to this all go down) were soon joined by a third patient who was also there for chemo. She had just been transported from St. Paul's after an emergency stay and was on oxygen.

When it became clear to Nurse Ratched that this woman had not come with her pre-meds (she had irresponsibly not bought them with her, what, emergency and all) and, shamefully, had not had blood work done (due, likely, to being in a frigging ambulance), the reprimanding began. Not once. Not twice. Not even three times.

The fourth time the nurse launched into her admonishment, the woman next to me (with whom I'd been exchanging glances of total disbelief) suddenly pointed toward the door and blurted out, "Spot? Spot! There goes my dog!"

Assuming she was having some sort of drug-induced hallucination, I casually looked out the door before I realized that this patient was actually providing a diversion so ol' Wackadoo would lay off the woman on oxygen. It seemed to work because the nurse also looked out the door then gave a confused look before admitting she'd lost her train of thought.

Success!

Most impressed by the this heroic display of chemo camaraderie, I started giggling with my mom and the other women. When the nurse finally left the room a few minutes later, we again shook our heads in disbelief and exchanged guffaws.

Now, had I continued to be the recipient of this nurse's continued disrespectful behaviour, I hope I would have had the presence of mind to tell her it is not OK to talk to me that way. That it is not OK to blame or bully a patient in any circumstance, and that her communication style is extremely inappropriate and therefore not going to be tolerated.

Mind you, how it actually unfolded made for far better theatre and gave me a brief glimpse into what it would be like to reside in a mental institution.

Manamana!

2009-06-07T21:36:00.000-07:00

In other words...I'm feeling wonderful, in fact, better than I have in ages (over a year, at least). So, I was either in desperate need of some vitamin D or the SGN 35 is getting to work.

Or, it could be all the TLC my mom's given me this past while (and always, for that matter). There has been no end to what she'll do to help me feel better.

She's also become quite a chef (despite food previously being, well, perplexing) and has helped me take care of virtually every little detail in my life that, left undone, can become overwhelming very quickly. I am so grateful and proud to have her as my mother.

Happy Monday, Mom!

No More Tears?

2009-06-04T00:55:00.000-07:00

Well, I must be feeling better because I'm back to my wackadoo ways, ranting and raving and threatening to send hate mail to Oprah.

OK, she's not on my hit list this week; instead, it's the hosts of the asinine program, The Mom Show. I don't think it's currently broadcast in the US, but it's going to be and for those not in the know, it is touted as being to moms what Sex & the City is to the single woman. Uh, not quite ladies, you just ain't that funny. However, that is not the problem.

Recently, I've noticed the hosts, Laurie Gelman and Catherine Marion, showing up in a series of TV ads for Johnson & Johnson's baby products. They are apparently unaware that Johnson & Johnson is being urged by more than 40 organizations representing 1.7 million parents, health care providers and environmental health advocates to remove toxic ingredients from its popular baby products.

Johnson’s Baby Shampoo and other of its top-selling children’s bath products contain formaldehyde and 1,4-dioxane. Both chemicals are known to cause cancer in animals and are listed as probable human carcinogens by the US Environmental Protection Agency. A recent National Cancer Institute study further reinforces the link between formaldehyde exposure and cancer.

Johnson & Johnson is being asked to remove formaldehyde and other hazardous chemicals from its personal care products by the end of 2009. So what, pray tell, are the hosts of The Mom Show and its network Slice doing endorsing these products until they comply?

Furthermore, I feel quite certain that if you or I were being asked to endorse a product (cheezies, anyone?), we'd do a quick Google search and get the facts before hamming it up for the camera (OK, I'd still ham it up, but I'd have my facts straight).

For more info on the Johnson & Johnson campaign, click here.

Next time...Breast Cancer Barbie and, yes, unfortunately, I'm serious.

Blue Skies

2009-06-02T20:39:00.000-07:00

The sun is shining and the ice cream truck is cruisin' the 'hood - things are good.

My cough is finally gone, the night sweats and itching have subsided and I am finally getting some sleep. All good signs.

Now back to that fudgesicle.

At Long Last

2009-05-24T22:56:00.000-07:00

...my first infusion of SGN-35! (and those are sunglasses not Mickey Mouse ears on my head).

All went well on Thursday. Fortunately, I didn't have any adverse reactions to the drug. I did, however, have a very nice nurse who made my first treatment at the Agency a pleasant experience (despite all my visits to the BCCA, I've never actually had chemo there).

Currently, I'm still very tired from the previous coughing and anemia; my heart rate goes postal if I over-exert myself (too bad about that laundry). Regardless, I am just so happy to finally be at this point and am full of hope.

If all goes according to plan, I will receive infusions of the SGN-35 every three weeks, and should have a PET scan 6-8 weeks from now.

I so appreciate all your messages of love and support, and roll out the welcome mat for more "peaceful, killing thoughts" sent to the tumour cells (thanks for that one, Martha!)

Thunderstuck

2009-05-21T00:11:00.000-07:00

After more than seven and a half months of waiting, I will be having my first infusion of SGN-35 today at 3 pm. I sincerely hope there is not an electrical storm as, after all it has taken to get to this point, I am a little leery of being struck by lightening on my way to the clinic.

That said, when I think about what it would feel like six weeks from now to have a scan that shows the areas of disease in my body shrinking instead of growing, what it would be like to one day read the words "no evidence of disease," it makes me weep.

My intention and greatest hope is that this drug will be able to accomplish what has not yet been possible for me and others with refractory disease - remission.

News from Brew Creek

2009-05-19T22:11:00.000-07:00

Some of you will remember a post I wrote back in March about a little evergreen I call Pint. He lives on the edge of Brew Creek near Whistler where I have attended several healing retreats with the Callanish Society. The team just returned from their 47th retreat last week and they had some exciting news for me.

Not only has Pint grown...

He has some new tenants!

2009-05-13T17:55:00.000-07:00

I'm starting to feel like the girl who cried wolf...

The start of the trial has been bumped, again, to next Thursday the 21st. There is apparently still difficulty getting the drug to Canada.

To my knowledge, I will be the first person living in Canada to receive this drug, so it is not surprising that it is taking a while to get things sorted. Actually, I'm not unhappy to have another week to recover from the various procedures/events of the last month. I have literally put everything else on hold in order to focus on conserving my energy, recovering my stamina and making my diet even more nutritious than usual.

Today's menu included plain yogurt and stewed prunes for breakfast (I am not having another emergency enema, thank you very much), a chicken and veggie stirfry (thanks B) for lunch, a plate of raw veggies for a snack, loads of green tea and a Vega smoothie for another snack. Dinner, in the oven now, will be lemon sole, sauteed kale and steamed yams.

Of course, I am only telling you this to assuage my guilt over last week's chicken-nugget-Haagan Dazs-two-bags-of cheezies-in-a-day debacle.

That's Over With

2009-05-11T20:25:00.000-07:00

So, I forgot to mention in my last post that I made it through my bone marrow biopsy last week.

As it was not possible to use conscious sedation for this procedure like they did in Houston, and my previous experience without it was rather grim, I was all for the use of any and all other narcotics. However, despite two Ativan and several shots of morphine, I seem to have the drug resistance of an elephant and still felt way too conscious.

So as the very nice doctor inserted the needle in my back to freeze it and said, "Ok, small mosquito bite now..." I unintentionally let out a loud, resentful Ouch, then muttered to Ian (whose hand I nearly squeezed off), "Big f*ing mosquito!" I guess the doctor heard me because she sympathetically said, "Ok, maybe not a mosquito."

When it was time to extract the bone and there was a discussion going on that it really required "more strength in a doctor's back and legs than their arms" to do the procedure, it was also time to plug my ears and just grit my teeth. Needless to say, the doctor was very kind and skilled in performing the procedure as I had very little pain afterward and it was all over very quickly.

That's when the Ativan and morphine kicked in.