Eve of New Year's Eve

One of the great joys of this time of year (when worn out from eating and visiting) for me at least, is hunkering down on the sofa with a warm blanket and a steaming cup of cocoa to watch any number of classic movies.

Yes, there is the Sound of Music on Christmas Eve, but I'm talking REAL classics. Think A Christmas Carol (b/w version starring Alastair Sim), Miracle on 34th Street (1947 movie starring a very young Natalie Wood), It's A Wonderful Life ... You get the picture.

Over the years, many films have become an integral part of my holiday celebrations. For my late father and me, Christmas morning wouldn't be the same without at least one viewing of the above-noted version of A Christmas Carol - we'd compete to see who would be first to say the lines or spy the stagehand in the mirror. (Many thanks, Dave G, for taking up the slack in terms of the lines.) More recently, Cathy and I have enjoyed a seasonal movie screening over cocoa - at least until the last two years when health issues put a kibosh in the plans.

In the spirit of giving which is so much a part of the season, my New Year's Eve offering takes up where Dad, DG, Cathy, and I left off. Here's my video selection to help usher in all the promise 2013 holds. No, the song isn't as beautiful as last year's pick (hands down my favourite rendition of Auld Lang Syne) but it does contain both the classic film tradition and the wish that the new year start off on a happy note - and stay that way (last bit is my wish).

For some reason YouTube won't let me upload the video I wanted to include here. It's an actual clip from the movie Holiday Inn where Bing Crosby sings the song to Marjorie Reynolds (while serving up turkey dinners in the inn's kitchen). There are clips from that movie in this video, too, as well as some from After the Thin Man and others. Hope you enjoy!

And happy new year to all!

Christmas Wishes

Happy Christmas Eve!

May all my gentle readers awake tomorrow to find they have been visited by a very benevelant Santa - one that didn't feel the need to add to your already growing ugly Christmas sweater collection. Of course, there is always the chance the jolly ol' elf has a sense of humour as big as his belly. Exhibit A: what he left me last year.

Better yet, keep the Christ in Christmas - He is, after all, the reason for the season. And may you all experience the light and love that marks this special time of the year - no matter what you may or may not believe.

In the immortal words of Tiny Tim, "God bless us, every one."

End of the World - not what you think

So, here we are at December 22. A day after the day many believed the world would come to an end. As with every other predication made of such a calamity - whether by Nostradamus, various religious groups, or other Doomsday pundits - the world-wide angst over the rumoured possibility was all for naught. Or was it?


No, I don't believe some great apocalyptic event is going to befall us any time soon but maybe, just maybe, the world as we have come to know it IS coming to an end. Or at least undergoing some very radical changes. This may not be a bad thing in the end.

Not that long ago, the world was rattled by what became known as the Arab Spring. A few short months later, the Occupy movement swept through much of Europe and North America. Toss in the Euro turmoil and the dethroning of long-serving political leaders like Berlusconi in Italy. In India and parts of Africa, there are increasing calls for improved treatment of women and children. Closer to home, First Nation's rights and environmental concerns are coming to the fore as never before. In Quebec, members serving at all political levels are suddenly being held accountable for gang and mafia-affiliations. And south of the 49th, possibly for the first time in US history, there is serious talk of changing one of the Constitution's most volatile clauses, i.e. the right to bear arms. Meanwhile, in the face of dwindling congregations, various faith groups are grappling with mounting pressure to deal with weighty issues such as the ordination of women, same sex blessings/marriages, and access to safe abortions. The list goes on as calls for change are echoing in other quarters as well.

It seems all around the world, at every political level, every facet of society, citizens are rallying against the status quo. In some cases, people are fed up with totalitarian regimes and oppressive laws and/or the inequality between large portions of the citizenry. I liken the situation to everyone on the planet suddenly taking a role in that old movie Network, and collectively screaming that they are mad as hell and not taking "it" any more - even if they can't find the words to express what "it" is or what specifically is distressing them.

In other cases, there is a sense that if something doesn't change in specific aspects of society, matters will quickly become so skewed in a negative direction that any attempt to remedy things in the future will prove to be too little too late.

I remember reading somewhere some time ago that all of this was predicted via astrology and/or numerology. Perhaps. Whatever, it is interesting that so many people in so many places have hit their tipping point almost simultaneously. If you're more inclined to adhere to the so-called Mayan take, you might not have been as far off as naysayers would like you to believe. Perhaps only the manifestation of "the end" was not what you expected.

To me, the end of the year is more about the advent of something new rather than the termination of something gone before. Although the very number 2013 sounds ominous it might, in fact, prove to be the entry into a happier world for everyone.

Let’s just hope cooler heads prevail. My own included.

Inspiring Thoughts for Any Season

Many thanks to Jill and Janet for passing this along. Beautiful images and very thought-provoking words.

Hair today ...

Over the last couple of days I've noticed a number of little hairs clinging to everything from the bathroom sink to my cellphone. While polishing my smile at bedtime last night, I discovered the source: my hair is starting to fall out.

This is no great surprise as it is a very common side effect of radiation treatment, especially when targeted at the head. The loss is nowhere near as dramatic as the first time (during initial chemo/rad treatment five years ago). At that time, each hair on my head was about three to four inches in length. This time 'round, they are all about 1/2 inch as I had a very close buzz cut prior to recent surgery.

The cool thing about have such short hair just now is that I can easily manipulate the hairs so encourage some patterns to take shape as the hair falls out. By gentling rubbing on a given spot, I can create a bald patch within seconds. Current plan is to create a series of star-shaped bald bits, in celebration of the Christmas season. Must say at least one of my attempts more closely resembles a squished bug, but I'm sure I'll get the hang of some type of technique before all the stubble ends up in the garbage bin. Will post photo once there is something to see!

Have asked some of my more creative friends to apply henna designs to my scalp once all the hair is out. Feel this pre-henna stage is a good time to allow my own creative juices to get in on the act.

Rejoining the World

After three days of physical and emotional hell, I'm starting to feel a bit more like my pre-surgery self. Yesterday was by far the worst. Guess all the angst I hadn't addressed over the past five years found an opportunity in my recent vulnerability. Confess that when I was told the "inhibitions" section of my brain was the area affected by these latest metastasis (forgot to mention surgeon found a second smaller tumour during surgery but felt a second craniotomy would be too much trauma so opted to have the radiation work its magic instead) I never thought that it would manifest as a rant that won't stop. Why couldn't I just be promiscuous or something like that? Would be a heck of a lot more fun if nothing else.


How to describe my recent mental state. Only clear thoughts were negative - all the things I should have done but didn't, all the negative things (real or perceived) that have been done or said to me over my lifetime, that sort of thing. No, there were no suicidal thoughts. Been there. Not in a hurry to return any time soon. What I really needed was a darn good cry. Can't remember when I last turned on the waterworks but once the tears started to flow I felt an instant sense of relief. But then I couldn't stop crying, and that was just as unsettling. The worst part was not being able to articulate what precisely was bothering me. Just a lot of pent up stress, angst and emotion I suppose. But I have to wonder why it picked now to come to the fore.

At least the clouds have started to part, even a little, and I'm seeing some semblance of light beyond.

Around a month ago, when I first learned of the metastasis to my brain, I requested some time to deal with the news and subsequent treatment on my own.

Previous experience breaking such news resulted in numerous phone calls from well-intentioned individuals who somehow thought telling me about all their friends who have been diagnosed with cancer (folks I don't know and am likely to never meet) would somehow help ease my stress. Or I would hear about someone else's hospital experience (seriously, what health care professional would send anyone home if they were at risk of contracting an infection - although they might prescribe anti-clotting agents) or surgical mishap. Others would rattle on about having similar pain e.g. in the back, yet make a miraculous recovery after winning a trip to a warmer clime. Then there were the folks who needed more consoling than I did, or somehow managed to punctuate every response I had to their questions with a tisk-tisk click of the tongue. I know all these comments were well-intentioned, but given I was entering the most vulnerable phase of my cancer journey thus far I really wasn't prepared to take on anyone else's angst or fears. Hence my request for no phone calls. I was, however, willing to accept written correspondences via post or email which I responded to when I was able. To those who opted for that route of communications who also realized that I was willing to talk about anything other than my illness, I offer my sincere thanks.

I am gradually getting past the recent dark period. I hope it permanently goes away but suspect that is a very faint hope. Even so, I'm doing everything in my power to return to the land of the living.

Roz and Penny came by Sunday and helped get me back on track by sorting out my meds (I was weaning off the dex far too quickly it turns out) and forced me to get out of the house. Both were things I couldn't seem to do on my own. I'm not feeling stable enough to drive right now, and am not keen on being around crowds of people lest I pick up a cold or flu or other bug. On the other hand, wallowing in a pity party for one has never been useful and cabin fever does little to boost the psyche.

I'm taking phone calls again, and seeing people individually or in small groups. Also starting to see some of the funny things that make life so wonderful - something I haven't been able to find in several weeks. And while I am not exactly swept up in the holiday hohoho, I am finding little ways to celebrate with family and close friends. In this no gift/no card-giving year, I'm more convinced than ever that it is the shared love and goodwill of that makes the season.

Police Incident

Note to self: No matter how well I might feel I'm coping with my ever-changing life, there is always something darker lurking just below the surface. In addition to fear of where the next twist in my medical journey is going to take me, there is an unshakeable sense of impending doom. For example, I cannot get past the thought that this is likely my last Christmas. I need to find a safe outlet for all of that. In the meantime, recent brain-related issues have brought some of the frustration associated with those thoughts to the fore. In a roundabout way, I'm grateful in that the experience has oddly helped me cope somewhat better on an entirely new level. But not without some added emotional pain and frustration along the way.

My last post focused on how well I've recovered from my most recent surgery. A remarkable thing indeed, although I mis-wrote that I was eating lunch shortly after departing from the post-surgery recovery room. For the record, I wasn't even allowed water that first day - although I did opt for a couple of oral meds so my throat didn't completely dry up. Other than that, I had nothing more than a couple of sponge swabs to suck on. The first time I was allowed any amount of fluids let alone solids was the next day. That's when Ellen took the photo of me and my lunch tray.

I continued to improve until the afternoon of my second radiation treatment. That day I couldn't walk the four blocks from the Cancer Agency to Donna's place. I had to take a taxi. When I arrived at her condo, I went straight to bed and didn't wake up until it was time to go to the Agency for the next treatment the following morning. When I was at home for a break over the weekend, I was pretty much confined to bed.

Full-brain radiation results in an unbearable amount of swelling in the brain, far more than the surgery itself created. Migranes became a regular occurance as did nausea and subsequent vomiting. Head not at all happy. Nor was my sacrum largely due to the amount of time I had to sit on or get on and off a very hard x-ray table - halfway up or down was the worst as that's when the skin pulls tightest in that area of the body and the pelvic area bones take the most weight and strain. Walking wasn't particularly comfortable either. So it was decided that my sacrum should also receive a hit of radiation. That came on the final day of treatment, following the usual two-sided blast to the brain. I could actually feel the laser burning my skin and heating up the bone throughout the process, and the sacrum/pelvic area was even more tender when I wiggled my way off the x-ray table. Suddenly all radiation-related side effects were intensified. Dexamethasone dosage was doubled but I also needed hydromorphone (dilaudid) to help keep the pain under control. Not a happy time for brain, butt, tummy or any other part of my person.

As luck would have it, all this was taking place as the BC Cancer Foundation was ramping up its annual Christmas campaign. Everywhere I went in the Agency I was pursued by folks wanting me to buy raffle tickets or books or what have you. Lost count of the number of signs pleading for donations. More nausea set in as a result.

I used to be a regular donor to the BC Cancer Foundation and every/any other cancer-related charity. I also volunteered my time, much of it while undergoing initial chemo and radiation treatments. I thought I was doing a good thing, honouring family members and friends who had cancer. It was also a way of honouring my parents' philanthropy in that same direction - Dad started the volunteer driver program in South Surrey and was a regular driver himself. For several years he co-ordinated one of the largest door-to-door fundraising campaigns in that same area, and both he and Mom put in copious hours handling hundreds of blossoms on Daffadil Days. As I stated in an earlier post, in time I began to question the increasing corporatisation of all of these organizations' funding campaigns. And, yes, the Vim & Vigour thing continues to be a very big sore on my backside.

It has been some time since I made regular visits to the Vancouver agency campuses thanks to the ability to have many of my non-trial chemos administered through the hospital in Sechelt. Suddenly, for 10 straight days, everywhere I went I was subjected to V&V magazine as well as constant pleas for funds. In addition, the local media was finally telling the world what I already knew: that the BC Cancer Foundation does not give nearly the amount of money to research it says it does.

Understand, I think it is wonderful that the BCCF gives around 70% of what it raises to research. I would simply appreciate it if they were more honest about where the remaining money goes.

[[Don't believe me? Check out the Foundation's annual documents filed with the Canada Revenue Agency*. I was especially taken aback by the amount channeled into fundraising - akin to driving around asking for gas money so you can ask for gas money, no? Compensation lavished on senior personnel was another eye-opener. No thought that charity begins at home with these folks it seems. The cost of obtaining the rights for V&V (the lovely Amy at McMurray Publishing in Phoenix, AZ told me the BCCF bought the exclusive rights "for that jurisdiction" so at least no other local medical patients are subjected to the rag) is buried somewhere in the reported administraton fees. Yes, getting a mag this way is far less expensive than producing one from scratch, but that is yet another use of funds purportedly raised for research which are not going to their intended use. As for the recent coupling with Enbridge for one of the Foundation's major fundraisers, well that's a great way to have job security, no? But I digress.]]

From my experience, the BC Cancer Foundation is not at all interested in hearing from anyone who is not fully supportive of their tactics. I've filled out every survery, every comment card, sent emails, met with patient support reps at the Agency, and done pretty much everything else I can think of to get someone to understand that not all cancer patients like being pawns in the ongoing deception. No response. (If you are an articulate young person or a young mother with young children who says anything remotely positive about the Foundation or the research it purports to fund, you are whisked onto the lecture circuit so fast it will make your head spin. Personally I'm waiting for a wide-eyed pet to be the next Foundation spokesperson - nothing rakes in the dollars quite like kids and animals!) Sooooo when approached repeatedly for donations and having V&V thrown in my face for 10 straight days, I opted to try the only avenue I hadn't yet approached. Following my treatment, I walked to the nearest BC Cancer Foundation office to try to make my case in person.

As it happened, the closest office was on Heather Street, almost directly across from the BC Cancer Agency where I get my treatments. Nobody was in the front office area, so I had to call out before anyone came to see what I wanted. That's when I was informed that I was standing in the event planning office. That's all they did there, plan fund-raising events. And sell merchandise bearing the BC Cancer Foundation logo. Since nobody there would be able to address my concerns, the nice man who came to talk to me offered to get the business card of BCCF President and CEO, Douglas Nelson. The man asked me to wait until he got back and then left the building. For some reason I felt that would be a good time to tell the other staff members that they were making a living on the backs of the sick and dying, and that they should be ashamed of their role in the deceptive practices of their employer. That's when two attractive young women marched up and told me to leave. I refused on the grounds their superior had told me to wait. That's when one of them laughed - likely a nervous laugh, but a laugh just the same. Then she started rolling her eyes. That's when I dropped the first F-bomb as in "what the f*** is so funny?" or "what the f*** are you laughing at?". She responded by calling the police. The officer showed up at the same time as Mr. Nelson (and a bizarre woman who said nothing but was constantly shoving a box of tissues at me - how much does it cost the BCCF to have an offical Kleenex holder? FYI, the tissues are not standard hospital issue one-ply but triple-ply and the same colour as my paper panties. Wonder how many research dollars are diverted to fancy nose wipes.)

The officer left after less than a minute. He obviously concurred with my insistance that I wasn't bad but merely very angry and that his time and the city's resources would be better spent if he would pursue some nerdowell evildoer.

For his part, Mr. Nelson may have sat with me for a time, but he didn't hear a thing I said. Rather, he responded to each question, each comment with a well-rehearsed pat answer (in the media these are called talking points). Once again my concerns were totally blown off.

But there is a happy ending to all of this.

Not only were my family members and friends spared news footage of my possible arrest for disturbing the peace by demanding the BC Cancer Foundation be more truthful in its remarks about the amount of money which actually goes to cancer research (closer to $23million not the much touted $50+million the BCCF claims - see that T3010 for proof) but I discovered a way to bypass the BCCF altogether and, thereby, ensure my donations for research actually go to researchers. It is heartbreaking to know that most if not all cancer researchers are forced by the current system of fundraising to spend more time seeking funding than doing any form of research. How do I know? I have friends who just happen to be cancer researchers. They also tell me there is often not enough money for basic office and lab supplies let alone salaries for researchers. A very sad state of affairs.

I am hoping that, somehow, the BCCF learns to be more sensitive to the affect its various activities have on many of the people it claims to be helping. There has to be some forum for bad players like me who don't feel comfortable quietly accepting the current way of doing things. Nobody likes to be used or abused or disrespected. People who are ill far less so. I also have little doubt that the majority of donors - who are not counted among the healthy wealthy who insist on getting something in return for their dollars be it their name emblazed on a building or invitations to lavish gala events - like being deceived re where their donation actually goes. Given the BCCF's track record, I truly doubt ticking the "research" box on a form in any way ensures an attached donation is used solely for that purpose.

So here's the happy ending:
I've learned of a way to give to cancer research without having to go through the BC Cancer Foundation or any other agency. Yes, Virginia, it is possible to given a donation directly to a researcher or research team. I found my donation destination via a simple Google search. Log onto the BC Cancer Research Centre website (http://www.bccrc.ca/) and click on the Departments and Programs page, or do a search for a specific cancer or research field. If you contact the researcher/research team directly, they will tell you the best way to donate to them directly. Okay, so you might not get your name on a building, or even a tax receipt, but at least you'll know your donation is going where you intended it to go.

*  http://www.cra-arc.gc.ca/ebci/haip/srch/charity-eng.action?r=http%3A%2F%2Fwww.cra-arc.gc.ca%3A80%2Febci%2Fhaip%2Fsrch%2Fbasicsearchresult-eng.action%3Fk%3Dbc%2520cancer%2520foundation%2520%26s%3Dregistered%26%3DSearch%26p%3D1%26b%3Dtrue%26&bn=118818434RR0001   Click on the T3010 for details as submitted by the BCCF.

Wild Couple of Weeks

Am slowly getting up and about. The operative word being slowly. Between headaches (technically my first-ever migranes) and continuing back pain, I can easily be out paced by any snail or turtle that happens to cross my path. At least I'm making progress.

The last couple of weeks are something of a blurr now. In many ways time plodded along, in other ways it flew by so fast. Of course, I was unconscious for a portion of one day. Several folks have asked me to describe some of my experience, and I'll try to do that here. With luck, my make-shift photo techniques will offer up some visual aids for the amusement of all.

I'll begin with describing the pre-op routine I underwent the night prior to surgery. During the morning pre-op meeting (with nurse, anethatist, etc.) at the hospital, I was given a speciman container filled with 2% chlorhexidine gluconate, an anticeptic. The instruction was to shower just before going to bed, using the anticeptic in place of any soap or body wash. There was enough in the container to scrub every nook and cranny from top of head to tip of toes of my person a total of three times. I felt very clean crawling into bed that night. In the morning, after checking in, I was handed a sealed package containing six towlettes that had been soaked in the same solution. The towelettes were snow white, and had a texture similar to a cat's tongue. Using a numbered drawing as a guide, I was told to use one towelette on each section of my body, being careful not to overlap any of the areas. Happened to glance at the towelette used on my chest, and noted a distinctive beige colouring. Was it dead skin? Something that had oozed out of my pores overnight? Dirt that failed to come off during the previous night's ample washing? I have no idea, but I suddenly felt very dirty despite giving myself a most thorough cleaning. The pre-op nurse told me all this cleaning was part of a program to help reduce the number of infections patients contract while in hospital. Apparently the method has lowered the incidence of H1N1, Norwalk, c-difficile, and other infections by at least 40%. So all worth the effort, me thinks. But the cleaning wasn't limited to my skin alone. Oh no. The most amusing aspect of the routine (at least for Phil and Ellen who were standing by until I was called to the OR) came when a nurse continued the disinfecting process by attacking any nasties that might be lurking in my nose. That's right, my nose. She first swabbed each nostril with a bright blue solution, and then inserted a light bulb (like those little LED Christmas bulbs) in each nostril. I could feel things warming up, but it wasn't to the point of being uncomfortable. The blue solution did give off a rather odd odour, however. Here's a photo Ellen took via her cell phone. The spiffy glasses helped protect my eyes from the very bright light that had once been my dainty proboscis.

Within minutes after that, I was whisked into the OR, had a brief chat with the surgical team, and said goodnight to those gathered around.

Next thing I knew I was in recovery and being wheeled onto the neuro-ICU ward. Lunch arrived a short time later as did the first group of residents making their rounds. As Penny reported, I was awake enough to greet the group even if I could only see half of them.

An added benefit to having one eye swollen completely shut was that I couldn't identify much of anything on the lunch tray. This in no way enhanced its edibility, but did manage to divert my gaze enough to venture eating at least the salad (iceberg lettuce and 1/2 tomato) and overly salty soup. I'm sure my hospital attire will soon be seen on fashion runways around the world, especially the "happy face" no-slip socks. Too bad we didn't get a photo of the amazing inflating pant legs! Wearing them was like having a constant leg massage - a nice alternative to my usual daily anti-clotting injections.

Every hour on the hour for the first two days, a nurse would check my brain function. She'd ask my name, where I was, why I was there, and then have me wiggle my fingers and toes, squeeze her hands, lift my arms and go through several other gyrations to ensure all synapses were firing as they should. At first this seemed rather silly since I knew very well who I was and could easily perform all the tasks as requested. However, I could easily overhear similar conversations being held in the adjacent rooms, with less postive results. An older gent in one room beside me had suffered a stroke, and couldn't say his name. He also thought he was in a hotel rather than a hospital, but couldn't figure out what city he might be in or what might bring him to a hotel where folks asked him odd questions. There were a number of other brain injuries, some from car or industrial accidents. Then there was the dude who just woke from a coma after being in a bar room brawl - he had several drinks, a few Tylenol for a headache, a few more drinks, got into an altercation in which he struck his head en route to the floor. When he woke up on the ward he didn't know where he was or what had happened to him, proceeded to rip out all his lines, and took out one nurse while she was emptying a drain. After that the fellow was retrained and nurses and other staff were instructed to not enter his room alone. Yup, time on the ward was a real eye-opener. Once again I considered myself very fortunate to be there under the circumstances as they were rather than as any of these others had come to be there.

Odd thing: I felt very little pain post surgery. Only thing I took was regular strength Tylenol. On the 1-10 pain scale, my discomfort never got higher than a low 3. Again, I feel very fortunate. Especially when one considers how I looked once the bandage was removed. To think that some folks pay a lot of money to look like this! If only I had surgery a couple of weeks earlier, I would have won every Halloween contest going!

Don't those staples make you think of a mini model railroad? The "track" runs across the top of my head and along the back of my ear. Another shorter track is positioned over the former cyst site about two inches above my left ear. The brusing is caused by the pooling of spinal fluid and blood post surgery.

Two weeks post-surgery, there is still some minor brusing in the under eye area as well as on the inside of my right wrist where one of the IV lines was inserted. Suspect the fact that I'm back on the anti-clotting agent dalteparin has much to do with the slowness of healing. I had the staples removed last Tues, just prior to starting radiation. My very short hair still has large globs of blood attached to it along the incision lines. Have tried to remove it using warm cloths, but hair and scabs continue to pull away as well which starts things bleeding again (thanks to the deltaparin, no doubt), so I'm letting it fall out of its own accord. All of my hair should be falling out very soon in any case, thanks to the radiation. With luck, by then the incisions will have healed enough to do a proper clean up.

So far radiation treatment is going okay. It takes longer to set things up than to do the actual treatment. The techs line the beam up to the bridge of my nose and the two bones at the back of my skull (one either side of the spine). I get two blasts of radiation, one on each side. Each blast lasts about one minute. The odd part of the whole experience is the sudden smell of ozone as the radiation beam bursts into action. The room smells like smoky bleach. Not unpleasant, but not exactly appealing either. Just strange.

I've taken a taxi to Donna's after each treatment, even though her condo is only a couple of blocks away. Guess all that attention to the brain has more of an unsettling effect that I first imagined. Know I'm suddenly quite tired. After the first treatment, I had one of the worst headaches of my life. Suspect it was my very first full-blown migrane. Lots of those odd auras like I had a few weeks back when I thought something weird was happening to my eyes. Fortunately, after the second radiation treatment, I was put back on Dexamethasone, so post radiation brain swelling is better controled and, thus, so are the headaches. But I'm still mighty tired. Had hoped to use time in town to catch up with folks I haven't seen for a while. Instead, I'm spending a lot of time in bed. Guess that's what my body wants right now.