Fuck the Pink Ribbon Campaign

Now that October is coming to an end, I feel somewhat safer in launching into a diatribe based on my feelings about the ubiquitous pink ribbon. To spare those gentle readers who are sensitive to any thought of someone - especially someone entering the final stages of breast cancer - dissing the program, I'll cut to the chase: It ain't about finding a cure, it ain't about helping people in need, it's all about money and always will be.

Think about it. So many companies are making a tidy profit over the sales of items coloured Pepto Dismal pink that there is little incentive to slow their marketing efforts. How much money from the sale of a pink high-end dough mixer do you really think makes it to the charity? With everything from toilet paper to garden tools and everything beyond and in between, how many of those companies would be producing any of this crap if they weren't certain of making a profit - profit based on public fear of a disease and all its implications.

If there is such a concerted effort to eradicate cancer, why are the efforts being constantly divided by competing charities at the federal, provincial and local levels? Why not one umbrella group with local representation? Why are there separate agencies/foundations for general cancer and for every separate flavour of the disease? Breast cancer groups seem to be the most prolific. Is that because tits are sexier than, say, bowels? Is it because no self-respecting Mad Man would launch a campaign based on something as close to home as testicles, but happily encourages the plastering of breasts or words pertaining to same at every possible opportunity because if they can't grope them they can at least enjoy gawking?

I find it very, very difficult to believe that the total annual administrative costs for the BC Cancer Foundation (or any of the other national, provincial or local agencies) is well under $3,000. Is NOBODY paid a salary? If not, anyone contributing to these organizations is also contributing to individual poverty of the employees thereof. Volunteers would be risking a great deal if they are the only ones responsible for the intake and distributing of such large amounts of funding.

If so much is going to finding a cure, why do the people I know who work at the BC Cancer Agency's research centre find their work increasingly jeopardized by lack of funding? Why are research projects into some forms of the disease given regular support - i.e. those with the higher public profiles - while others receive next to no funding whatsoever?

And what about the people who have/had cancer but will die of other causes? Even someone with as poor a grasp of mathematics as me can see that more people live with the disease than die of it. Why aren't they and their families getting better access to counselling? Assistance with drug costs? Other support that doesn't come cheaply?

Also, why is so much money being wasted on "special gifts" to donors - crap like address return labels, personalized note pads, pocket date books? It is highly doubtful that such a "gift" will entice someone to give if they aren't already inclined to do so. If these items are given in return for a tax receipt to the printers/producers of the offending items, surely cancer patients, their families, and the landfill would be happier to see a direct donation instead. In short, that money could be far better spent elsewhere.

In my mind, the most blatant example of waste - and insult - comes in the form of Vim & Vigour magazine. For those unfamiliar with this little rag, "Vim & Vigour is the BC Cancer Foundation's quarterly publication created to provide you with the latest in health care information with a specific emphasis on cancer prevention, screening, early detection and breakthrough research being conducted right here in B.C. at the BC Cancer Agency." Really? So why are Colin Firth, Sandra Bullock, George Clooney and other beautiful people the cover kids on each issue? Are they the face of cancer? And what of the magazine's content? The latest issue trumpets its cover story this way: "A New Day: JENNIFER HUDSON makes maintaining
her new, svelte shape look easy. Here’s how she does it—and how you can, too." I have rarely come across anything so insulting, so void of feeling, so incompassionate. AND FROM THE BC CANCER FOUNDATION NO LESS!!! Don't believe me? Check out  http://bccancerfoundation.com/sites/default/files/vv_fall_2012-final.pdf

How much of those donation dollars went to pay for that crap?!

Yes, Virginia, there are scarier things about October than Halloween. Clearly Breast Cancer Awareness Month is one of them.

Since many of you have asked, I'm putting my money in my local community where it will do the most good. Charity of choice in this regard is The Ruby Slipper Fund (administered through the Sunshine Coast Credit Union). I've mentioned it before but given my growing concern about how the public is being pink-washed (much like how companies green-wash - appear to be concerned about the environment but only pay lip-service at the lowest cost to do so) feel that it is best to re-introduce the fund for anyone who didn't hear about it before. The fund has helped the local hospice society purchase a special air mattress so bed-bound patients are less likely to develop bedsores. They also help with medication costs, which can be huge (My anti-clotting drug alone costs $1000/mon, never mind the rest of my meds. What has saved me is the "terminal" diagnosis - the government picks up most of my tab, but by no means all.).

All I ask is that, next time you are approached by any foundation or agency purporting to support cancer research, get some facts about exactly where your hard-earned donation will be spent. Also ask about their specific marketing strategy. If it looks insulting and insensitive to you, just imagine how it looks to someone who could benefit from money actually going to research and patient support.

In the meantime, happy Halloween!

Might as Well Laugh as Cry

Life continues to present unexpected catch-my-breath moments - like the view along the Laurel St overpass in Vancouver and the fall colours that underscored the beauty of the seawall walk that I took from my oncologist's office to the studio last Tuesday after receiving my diagnosis. Fall is my favourite season, and what my eyes beheld on that walk was a treat worth living for. This realization, as I walked along, seemed to confirm my assertion that there is wonder and joy in every minute of life if we only take the time to see it, even if we think things couldn't get darker.

Increasingly, I'm also seeing humour in the most particular things. It's almost as if someone tosses a coin and my brain chooses to interpret a given situation as pure fact or as another example of an odd/bizarre/funny incident. No doubt the latter is a coping mechanism and a very palatable one at that, at least for me.

The opening lines of that old Indigo Girl's chestnut "The Closer I am to Fine" go like this:
I'm trying to tell you something about my life
Maybe give me insight between black and white
The best thing you've ever done for me
Is to help me take my life less seriously, it's only life after all

And it is only life, after all. We're here for a bit, and then we move on. That's life. That's reality. I get that.

Here's a wee something for all of you who have long wondered about my general mental state. Seems I'm not the only one to use humour to get through the tough times, and see the funny side when others see only tragedy and despair.

Below is a link to a podcast about four months in the life of comedian Tig Notaro. It aired on Public Radio International (PRI), the US version of our beloved CBC radio. Everything Tig talks about actually happened. I can more than identify with the tales of other people's responses to her situation, as well as the inappropriateness of many aspects of hospital bureacracy and stupid questions from some staff members. (That said, I have few complaints about my overall health care experience, other than what is passed off as food in medical institutions.)

Both the Prologue and Act One of the link below focus on Tig and her story, but only for the first bit of each.

I hope at least some of you find some of the humour I did in what Tig had to say and, perhaps, gain a bit more insight into what it's like to be on this side of the "terminal illness fence".

http://www.thisamericanlife.org/radio-archives/episode/476/what-doesnt-kill-you

On the Border

I've never been to Stanstead, Quebec, but suspect I have some idea of what it must be like to live there. The town and its alter-ego Derby Line, Vermont, straddles the Canada-US border and, as such, poses some interesting challenges for town residents. To get into the front door of the public library, one has to pass a border pylon plunked into the sidewalk as a U.S. Border Patrol agent in a pickup looks on. A few strides through the library entrance lies the reading room, but bibliophiles have to step across a strip of electrical tape on the floor, walk out of the United States and back into Canada, where most of the books are shelved.
In the attached opera house, the performances take place in Canada, while most of the audience sits in the United States. All of this back-and-forthing no doubt causes frequent "where am I?" moments.

In many ways, I'm currently residing in a very similar space. I'm scared as hell, but also feel incredibly calm. One foot is firmly in the present while the other is drawn increasingly toward the future. I'm up for seeing a few folks from time to time but require hours of alone time. I continue to enjoy the world around me while giving over ample time for quiet reflection. Everything is strange but oh so familiar. The only other time in my life when I felt even remotely like this was while resurfacing after my full immersion baptism in Porpoise Bay some years back - nothing had changed but everything had changed.

As luck would have it, I recently heard a bit on CBC radio that might help many of my gentle readers better understand where my head is at these days - and where it has been (pardon the pun) heading for some time.

Soon after his mother was diagnosed with stage four pancreatic cancer, Will Schwalbe quit his top publishing job and began reading ... with his mother. Together they formed The End of Your Life Book Club, it was his way to connect with her as he shared care-of-a-dying parent with his father and siblings. The bond they created and the insights they shared live on in Will Schwalbe's new book. We ask about the determination to live even while you are dying.
Download The End of Your Life Book Club: Will Schwalbe - October 15, 2012
[mp3 file: runs 00:23:06]

Two things in particular jumped out:
Will's mother kept saying how lucky she was. I totally get that.
Will's mother had a life-long habit of reading the end of a book first. I've never done that, but understand the metaphor the behaviour represents. By knowing how the story ends, his mother didn't have to focus on what was going to happen. Instead, she was able to savour the finer points of the narrative as well as the nuances of the language. He felt that was much like her attitude to her disease: she knew how her story would end so could focus her attention on living her life. Perhaps that's why I am able to continue enjoying myself despite growing medical challenges? Interesting thought.

Scan Scheduled

Brain scan is booked for next Fri, Oct 26 at St. Mary's in Sechelt. Will update further info as it becomes available. In the meantime, my Angry Birds skills are improving by leaps and bounds.

Cat Bites

If you have not yet read the previous post titled "Please Do Not ...", please do so before you read what follows:


Got the results from last week's CT scan when I saw my oncologist yesterday. Yup, that cat (CT) really bites.

The upshot of the scan results is that I am no longer able to continue on the trial drug (NKTR-102) that I've been taking. It didn't produce the results we were hoping for and also caused some side effects, such as prolonged fatigue and very suppressed immune system, that have seriously compromised my quality of life.

Here's what the CT scan showed:
There is no change re the lesions in my spleen or neck. That's good. Also, no evidence of metastasis to the liver, kidneys, or other organs. This latter bit is very good news indeed. However, there are more lesions in my lungs and sacrum/pelvis than were present a couple of months ago when I started on the current trial drug. Several previously noted lesions show some degree of growth. In short, the NKTR-102 isn't doing its job. Those findings are the reason I am no longer on the study.

The CT scan showed something else as well. There is evidence that the cancer has also spread to my brain.

I knew there was a very real possibility of this happening at some point. Like the lungs, the brain is a common site for breast cancer metastasis. Of course, knowing such things in theory doesn't reduce the shock that comes with the news that such a thing has actually happened. I felt much the same way when I first learned the disease had spread to both lungs. However, the thought of anything disturbing the fine workings of my highly sophisticated and Mensa-worthy brain is much more than a titch unsettling.

I think I'm over the initial shock of this latest bit of news. At least for now. Am concentrating on waiting to hear when a more-detailed brain scan (CT scan) will be undertaken and where it will happen - might happen sooner at St Mary's (Sechelt hospital) than at the Cancer Agency due to a smaller population making demands on the available equipment. When/wherever it happens, that scan will provide a lot more information than we have right now, and will help determine possible action that can be taken. Or not. Surgery, radiation and chemo have all been mentioned, but no plan can be formed until the oncologist knows what we're dealing with. The cancer may only be in one spot. It may be more widely spread.

I believe my oncologist said the lesion noted in my brain on last week's CT scan is about 1cm in size. That is by no means large, no matter what the basis of measurement. It is located in the frontal-most part of the brain, an area called the prefrontal cortex. The specific area affected is the part that controls inhibitions. When I asked my oncologist what effect a tumor in that area might have, she responded by saying "Think of a 72-yr-old straight-laced churchgoing man who suddenly becomes vulgar, foul-mouthed and promiscuous". Yup, that's something that needs to be taken care of before it gets too far out of hand. (Never fancied the thought of being a 72-yr-old man, churchgoing or otherwise.)  Might also explain some of the verbal outbursts I've had over the last few months (e.g. yelling at my former neighbour - the town gossip - in the local grocery store).

Good news:
It appears that, no matter whether there is one lesion or more, treatment options are available.
I will likely have a chance to knit and wear that pink hair-like hat after all!
There's a good chance I can have the much-hated sebaceous cyst removed - that bump on my head that has caused my hairstyles to be  less than perfect for so many years.
Even though the current chemo isn't helping my situation, the study drug from last year's trial is now available. I can start on that once the "brain business" is sorted out.

Better news:

Should I start exhibiting any further evidence of inhibition-related issues, the study nurse (who lives here on the Coast) and a couple of friends have volunteered to set up a LifeLine-type call system so they can respond with appropriate intervention whenever it might be required. I wonder if they'll get special superhero costumes or spiffy souped up cars for such occasions. If operating under a superhero guise, what would they be called and what would their specific superpowers be? The mind reels with possibilities.

To sum up: Remember, my life ain't over yet!! And won't be any time soon if I have anything to say about it!


Will provide more information as it becomes available. 

Please Do Not ...

This post will make much more sense after you read the following entry. But read this one first.

Know that your love, support, and prayers have meant far more to me than I can express in words. As such, I apologize for any hurt caused by what follows. It is not meant to be taken personally. It is not meant to "target" anyone in particular. It is merely an expression of what I need and do not need at this time.

As you will learn in the post that follows, this is becoming an extremely stressful time for me. What I say here is a feeble attempt to reduce at least some of that stress.

I am sorry if any of this comes across as rude. I am simply stating what I need and do not need at this time, and will try to add some explanation in the hope that y'all can "get it" a bit better.

Deep breath. Here we go:

Please DO NOT -

1) Please do not phone me. I have very little energy to talk about my situation other than to the few select people (e.g. family) who need be kept informed as things develop. Also, I do not wish to keep repeating the same information ad nauseum. Know that when I feel up to talking to you, I will call. In the meantime, I will endeavour to update this blog as much as possible.

2) Please do not project your fears on me in any conversations we do have. I do not need you to tell me that "this is awful" or "how terribly tragic". And please don't tell me to get a second opinion, or that this could lead to something else, or any other verbal wringing of hands. Should I be bald when next we meet, do not cry over my hair loss - it didn't bother me before and I doubt it will bother me should it happen again - or any other physical changes you may detect. I have my own concerns and fears to contend with. I have neither the time nor the energy to deal with yours.

3) PLEASE DO NOT TALK ABOUT ANY OF THIS WITH MY MOTHER!!! Should you talk to or see my mother, do not mention my condition. If she brings up the topic, try to change the direction of the conversation or be as vague as possible - "I haven't talked to J for sometime, but when we last spoke she was fine" will likely suffice. Mom is already worried enough about me. She also has her own health issues. I have always been upfront and honest with Mom regarding my situation. That will not change. However, it is best that she be given only essential information on a need-to-know basis - from me. She can't process much more than that.

4) Please do not suddenly start searching the Internet to find out more information about my situation. Much of what is posted is erroneous. Many of the sites are not credible. Much of the information on credible sites is outdated. While some of the case studies may pertain to others with similar conditions, each of us will have enough individual variations to make any comparison useless. My medical team is my go-to for information.

5) Please do not send me information about amazing/wonderful/break-through "cures". Cold hard fact is that should such a thing exist, it would already be in wide general use. Besides, I have no intention of spending the foreseeable future downing copious quantities of baking soda in water or pureed asparagus or whatever. Should the time come that proven science-based medicines are no longer an option, I may opt for something alternative. Or not. My medical team keeps me abreast of the most recent research regarding many non-traditional approaches as well as science-based medical advances, so I'll be in good shape to form a plan if/when the time comes.

6) Please do not suggest that what has befallen me isn't fair. I've had 50+ excellent years of a very blessed life. The only certainty in life is that none of us gets out alive. We've all gotta go sometime. I suspect that, statically, I have a far greater chance of being a traffic fatality.

7) Please do not play the "religion card" with me. Do not say things like "it's God's will" or "how can a loving God do such a thing?" or "if you would only accept 'the true faith' you will be surely saved". In my view, such rantings are an expression of the speaker's own religious hang-ups. Please keep yours to yourself. I have a very strong faith that has and continues to sustain me.

Guess that's it, at least for now.

Many thanks for your understanding.

Personally Plural

Animal group terminology:
apes = shrewdness
bears = sleuth
cats = clouder
deer = bevy
elk = gang
ferrets = business
goats = tribe
hippopotamuses = bloat
kangaroos = troop
lions = pride
moles = labour
otters = romp
porcupines = prickle
rhinoceroses = crash
sheep = drove
tigers = streak
whales = pod

Me? Well, most who know me will say I'm pretty unique so I guess there is really only one of me. Feel free to thank God for small mercies.

However, there is a misspelling in the title of this post. It really should be "pleural" not "plural".

Just spoke with the study nurse (her weekly check-in). I let her know that I'm feeling pretty good right now, but am somewhat annoyed by the persistent cough. That's when she said she remembered seeing mention of a pleural effusion on my last CT scan report. Confess I didn't realize I had such a thing or at least don't remember hearing of it, but then I've been kinda overwhelmed by info of late.

Looked up a definition of pleural effusion and this is what I found:
Your body produces pleural fluid in small amounts to lubricate the surfaces of the pleura, the thin tissue that lines the chest cavity and surrounds the lungs. A pleural effusion is an abnormal, excessive collection of this fluid.

While chest pain hasn't been an issue thus far, shortness of breath certainly is. The matter has been much more noticeable in the last month. Suspect last month's cold thing didn't help matters. No doubt the "crackling" the GP heard in my chest (when I went to see him re the cold thing) was due to the fluid build-up, even though no pneumonia was present. Although it is unlikely the fluid will ever disappear, given my general state of health, it is hoped the chemo will stabilize it and slow its spread. Guess this is my "new normal". Hey, things could be much worse, so I'll take it for what it is.