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.
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.
1. Pet's name (and yours if you are in the picture)
2. Month and year of adoption
Kindly send your photos to: firstname.lastname@example.org
Thanks, everyone. Please feel free to share this information.
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.
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.
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.
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.
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.
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.
...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 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.
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?
I am a 32-year-old (now 36) female with Hodgkin's Lymphoma, a type of blood cancer affecting the lymphatic system. I was diagnosed in April of 2006 after an x-ray revealed a 10cm mass in my mediastinum (the cavity between the lungs and the chest). Subsequently, I've had five months of chemotherapy, but the disease has proved to be refractory, meaning it is "restless" and not responding fast enough. The next course of treatment is a stem cell transplant, the likes of which I will try to chronicle here for family, friends, and, well, voyeurs if you don't fit into one of those two catagories... In my "normal" life, I am a writer, animal lover, pseudo runner and paperphile (don't ask...) In general, an aficionado of little, but connoisseur of much... UPDATE - March 2008...After a stem cell transplant, 20 rounds of radiation, 10 more months of chemo and 5 more rounds of radiation, I am now doing clinical trials. UPDATE - November 2008...One trial down (MGCD0103). UPDATE - May 2009...SGN-35 trial (12 cycles). UPDATE - Feb 2010...Bendamustine (6 cycles). UPDATE - Oct 2010...finished Bendamustine and hoping for continued stable disease. Jesus, who's writing this stuff, anyway?