Chronicle of a Stem Cell Transplant (and on through to the other side)

Thursday, September 30, 2010

Summer Highlight Reel

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...

video

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.

Monday, September 27, 2010

Bad Blog Owner

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.

Sunday, September 05, 2010

We're On the Air

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.