Gratitude

A very humble but heartfelt thank you to all who visited me in hospital, sent cards and emails, offered up prayers and sent out healing vibes over the last few weeks. Your efforts were not in vain and will not be quickly forgotten. I honestly believe there is power in all that positive energy. May each of you receive double in return what you've sent my way as "thank you" fails to express the depth of my gratitude.

On the Mend

Many thanks to Penny for providing the post-surgery update. Yes, it is true. I was out cold one minute, and up having lunch and talking to the recovery team the next. I am trying to provide photographic evidence, but since my desktop computer crashed I haven't had the technology at my fingertips to upload photos as I might like - laptop doesn't talk to my other equip (printer, scanner, etc) and I can't find the card reader for my cell phone. No matter. Take my word for it, I'm just ducky. Really.

Am currently rushing to get ready for an early morning flight into Vancouver. Will see Phil & Ellen off at YVR before heading to the Cancer Agency for my first radiation appointment. Not sure I'll actually have a treatment tomorrow, but know I'm slated to be glowing for each of five days (Mon-Fri) for two weeks.

Had the 35 staples removed from my nog this morning. Scalp feels very odd. The staples formed a sort of ridge on either side of the incisions and it is taking some time to settle back into the natural flat state. Still can't raise my right eyebrow all that much, and there remains a fair bit of swelling and bruising around the right eye where the various fluids and blood settled post-surgery. Over all, it looks quite good if one compares to how things appeared this time last week.

Interesting how folks around Sechelt have reacted to my new look. Those who know me, even slightly (e.g. various staff at Clayton's) first express concern that I might be in pain. When I tell them they should see what the "other guy" looks like, it kinda breaks the ice and conversation comes easily. I have no trouble talking to people about what has happened to make me look the way I currently do. Suspect it is rather a shock when viewed for the first time. Lots of laughs about how, if my timing was better, I could have won every Halloween costume party in town. What I wasn't prepared for is the number of strangers who feel the need to stare/glare/or mutter "freak" or some such thing. Interesting little insight into how visually "different" people in our society must feel on a day-to-day basis. Oh yes, and then there was the waitress at the restaurant in Vancouver that we stopped at en route to the ferry on Friday. She practically ran up to our table and demanded to know if I was in a car accident!! Turned out her daughter was in a very serious accident the night before and only escaped serious injury because her date (the first time out with the guy) saw the other car heading their way and threw himself between the girl and the car thereby taking the full force of the collision. Best reaction: the huge grin I got from a very young boy (about 4 yrs old) on the street - I like to imagine he saw all that surgical steel like I did, as one nifty mini model railroad track.

Speaking of images, somehow managed to get a cell phone photo off to Roz. She asked what gang I had joined that prompted me to adopt such a fine new look. A gang? Hmmmm. First thought that came to mind was the Homely Sheared Locks (hey, I was an Arthur Conan Doyle fan before Robert Downey Jr was born!). Roz and her sister Jan are giving a thumbs up to the Surgical Steel Magnolias. Once I get some photos up, I am happy to receive other gang name suggestions. Am currently trying to envision what the full-patch jacket of a member of the Surgical Steel Magnolias might look like. Perhaps I can work some of the staples I kept into a spiffy insignia motif of some sort? Seems there's nothing quite like cancer to get the creative juices flowing, at least for me.

So to sum up: I'm doing well. Better than anyone expected but right on target for what everyone hoped. Surgery is over, staples are out, and radiation schedule will be established tomorrow.

Will post further news as it comes. With luck, I'll also be able to include some images to aid with the explanations.   

Channelling Janet

At Janet's request, I am providing an update - sure hope no one is expecting the usual level of entertainment.

The surgery today went well and was, in fact, completed a little more quickly than anticipated - even including the "beautification" of the scalp.  While the anaesthetic may have bought the surgeon a little peace and quiet, the word tonight is that the nurses are having their ears talked off by a very alert patient wearing a wide white headband.  Are we surprised?

Penny

The Plan

Had a whirlwind of appointments in Vancouver yesterday. Met with the neurosurgeon, the radiation oncologist, and also had yet another CT scan of my brain (third in two weeks). Upshot of all that is that I will be having surgery on Tues am followed by a course of radiation. Will give more details later, but here's the short story:

Have pre-op at 8am on Monday, so we (Phil, Ellen and I) are heading in to Vancouver on Sunday night. Surgery is scheduled for 7:30am on Tuesday. Procedure will include removal of the lesion in my frontal lobe as well as the annoying subcutaneous cyst above my left ear. Surgery time should be about 2hrs. Believe I'll be recovering in VGH. How long I'm there will depend on how quickly I recover from surgery, but am told to expect discharge by Friday. May be sooner or later, depending on my response. If I'm feeling well enough, and there is every indication that I will, radiation will begin next Mon. If I'm not up for that, it will be delayed until the following Monday. Will have entire brain radiated to ensure any potential sites (esp microscopic) are also dealt with. Treatment will be five days a week for about two weeks.

Given that the brain lesion is encapsulated and in a "quiet" area of the brain (eg not responsible for speech, motorskills, etc), it is very low risk. Surgeon said very little chance of side effects, especially since I don't currently experience seizures or anything like that. Essentially he'll cut a hole in the skull, take out the growth, replace the removed bone, and sew me up. The cyst is located between the scalp and skull, so no bone to deal with there.

Am told I will need to be much more vigilant about doing brain exercises like crosswords, sudoku, factual comprehension reading, etc to help the brain recover. Bonus: these things have also been proven to help slow the aging of the brain in non-surgical patients so will also serve as an ounce of prevention in that regard. Both the surgeon and radiation oncologist stressed "no passive TV watching!!" as it does absolutely nothing in terms of cognitive funtion. Good thing I don't have a TV and only watch anything via computer - a cheap alternative to TV that lets me watch what I want when I want (usually catch up on all my programs in one evening so TV doesn't rule my life like it might have at one time - you know, it's 9pm on Tues and "my show" is on).

Phil and Ellen are out until the end of the month, so they'll be available to help me both here and in Vancouver. They've been attending various medical appts with me already. Will likely stay with Donna during radiation treatment as she is so close to the hospital. Palliative care team is on deck to help out once I get back home as are several friends. I honestly don't know at this point if I'll need any of this assistance, but won't hestiate to ask for help if needed.

I'm staying away from group activities for the time being.

Will update with details as they come in. If I can't update the blog, Penny has agreed to post any news she feels appropriate to share.

Had my head shaved today. Prefer my stylist's touch to that of the pre-op team. LOVE having a wash-n-go head once more.

All for now.

Pressing Matters

My GP just called with results of Friday's x-ray. Turns out I have added another compression fracture to my rapidly shortening spine. Now boast injuries at T7, T8, and T10. Toss in some metastises in the sacrum (and an accompanying crack) plus a wee bit around C4 together with osteoporosis in pelvis and it's quite the little mess. My days of lifting - heavy or otherwise - have officially ended.

Pop

Pop is a sound I've come to dread. Not the sugary crackle of a refreshing soda, but the actual distinct sound that can only be described as a literal pop. I heard the sound twice on Friday, and am still in recovery mode.

The first pop was linked to my computer. In truth, the pop came on Thursday. When I first tried to turn on the machine, nothing happened at all. I unplugged everything and tried again. Eventually, after a soft little pop, the motor ground to life and all was as per usual. I took this as a sign that the computer's days were seriously numbered and took the opportunity to purchase some extra memory sticks in order to download my photo files, many images of which exist nowhere else. Too late. That little pop appears to be the computer's last gasp. No matter what I did on Friday, the machine could not be resusitated, and so the photo files are gone for good - unless I can find a computer tech who can give it a temporary boost so the images can be downloaded.

Many, many thanks to Donna and Eric for anticipating the need for a laptop back-up plan.

Less than an hour after the computer confrontation, I found myself poking about in my craft closet in an attempt to gather together some weaving and felting equipment and supplies that I was giving to friend Merrily for her birthday. My much-loved but little used table loom was to be included in the gift pile, but it was wedged haphazardly in the back of the closet and in need of one big tug to loosen it. Without thinking of my recent back issues, I stepped up and gave a heave. That's when pop number two made itself known.

The sound eminating from my back wasn't the worst of the experience. The immediate sensation as what I imagine an elastic band must feel. Picture a long thick elastic band running the length of my back. When I tugged at the loom, it seemed as if the elastic was being pulled through an opening in the middle of my spine when a disembodied hand was giving it a good twang - hence the source of the pop sound. While this was happening, I couldn't breath. Couldn't inhale even a tiny bit and had no desire to exhale, only get air in not out. Suddenly my head seemed to come unglued. There was a terrible roaring sound in my ears that was almost immediately joined by a ringing noise. I wanted to pass out. No, I wanted to vomit. No, I wanted to lie down. Not move... Went into the bathroom in case I was going to be sick. Wasn't. Took the opportunity to splash cold water on my face. No doubt I was going into a bit of shock. Thankfully had the presence of mind to call my neighbour Maryilyn who happily drove me to my doctor's office (I just happened to have an appointment scheduled that am re another matter - updating him re latest oncology developments). Was sent to hospital for x-rays. Still awaiting results. Given 'script for hydromorph to help with pain managment. Ran into friend Maggie at pharmacy. She drove me home. George and Merrily were patiently waiting for my arrival at home - we were going to have a birthday lunch to mark Merrily's day while she opened her loom and other goodies. They brough enough food to feed an army, so my larder is well stocked.

Since Friday I've been spending most of my time on my sofa, which is much firmer than my bed. For the first 24hrs my diet was almost exclusively hydromorph and dexamethasone with the odd bit of food to help digest the meds. The drugs allowed me to find one comfortable position that I could lie in for a prolonged period of time, thereby greatly reducing the chance of reinjuring my back. Unfortunately, nothing helped give relief when I coughed - amazing how many little muscles go into that activity.

It's now Sunday. I'm able to get up and move around a bit. Lifting nothing more than a fork. Stopped using the hydromorph yesterday am. Still quite sore, especially when I cough, but nothing like it was. I can sit up for brief periods of time. Even managed to sleep part of the night in my bed last night. When I am up and about, I wear a velcro back brace for extra support.

All in all, I'm okay. Terribly humbled. Pride much wounded. But okay. Hey, it's taken my mind off my brain for a bit. And if there is any issue re the spinal cord, I'm seeing a neuro-surgeon in a couple of days so he'll know what to do about it. Yup, things could definitely be worse.

Cerebrally Speaking

Although much improved with the increase in dexamethasone, my brain continues to make its feelings about the current state of things known. As someone who rarely gets a headache, constant pressure changes are something quite new. Most of the time there is little more than a vague sensation that things aren't quite as they might otherwise be. At other times there is dizziness and/or the feeling that something is pushing my head in a downward motion. Insomnia seems to have taken up any moments not already dominated by fatigue. This week, I've spent two full days in bed together with the better part of two others. Ambition is becoming an increasingly rare commodity.

One of the most annoying side effects is the inability to concentrate. The other night I was up until 3am and feeling rather energized. Assumed it would be the ideal opportunity to give the house a much-needed thorough cleaning. However, every time I started in on a task, my attention was distracted by something else that needed to be dealt with. In the end, I likely clocked a good 10,000 steps but accomplished absolutely nothing more than a mild aerobic workout. Perhaps the most telling example of how my mind is wandering comes via the short silk shawl that I am attempting to knit. The pattern calls for a three-stitch rib along the long edge. At some point I noticed the rib looked "stretched". Turns out I had inexplicably changed to a four-stitch rib about three inches into the project. Since the initial/greater portion of the shawl is straight stocking stitch, this wasn't really an issue at first but it did present a problem when I began working the lace trim as the stitch count completely off. Rather than rip out the majority of the shawl, I simply went back to the three-stitch rib and carried on with the lace pattern. It is the most simple of lace patterns, yet I have had to redo each pattern row 2-4 times. I also noticed that the centre stitch, a knit stitch that forms the backbone or point of the triangle, is crossed in several places along its length thereby creating an unintentional elongated "float". Certainly not my finest knitting. At least the yarn is pretty.

Toyota Time

Have an appointment with Dr Toyota, the neurosurgeon, on Nov 15. Feel I'm in good hands. Not only is he rated the top neurosurgeon in the Lower Mainland, but is also Provincial Chair of Neuro-Oncology. Bonus: sounds like he has a sense of humour so we should get along just fine.

Mindful Matters

Spoke with my oncologist today.

Results of the brain scan were much better than feared. There appears to be only the one lesion, and it is quite contained. There is no evidence at this time of anything developing in any other area of my otherwise unspoilt (albeit occasionally overindulged) grey matter. This is extremely good news as it allows for the widest possible range of treatment options.

Over the next couple of days, my oncologist will be meeting with the BC Cancer Agency's lead neurosurgeon (one Dr. Toyota - yup, he's driving this project) as well as the radiation oncologist who worked with me three years ago. Together they will determine the best plan of action. This may or may not include surgery, targeted radiation, full-brain radiation (which would also take care of any microscopic lesions that aren't yet able to be detected via CT scans and other tests), steroid treatment, other treatments I haven't yet heard mentioned, or a combination of two or more options. There is also the chance the team will determine that things are better off left alone for the time being. Or I might be given the full meal deal. Should hear early next week when I'm to meet with the team to discuss their decision.

The general plan is to stabilize the situation in the brain, and then get back to regular chemo treatments. My next drug of choice is TDM-1, the investigative drug from last year's study. Taking this will help slow the progression of the disease in other parts of my body.

I've been asked why switching to another chemo drug isn't the advised route at this stage. The simple answer is that the drugs that work on my type of cancer (HER-2 pos) aren't able to cross the "blood-brain barrier". In other words, the brain is designed to keep harmful chemicals such as chemo out. It's a natural form of protection. Unfortunately, the brain isn't smart enough to know if chemo is good or bad, so it keeps it out just in case. At least that's my understanding. (not sure why it lets hallucinogenics in, not that I know from personal experience, but how else does one get "high" - anyone?) So if something goes sideways in the brain, it must be dealt with directly rather than indirectly, hence treatments such as surgery and radiation. Like I said, that's my understanding of it.

There is some minor swelling in the brain at present, no doubt due to something foreign pushing resident grey matter out of the way as it tries to expand. Am taking dexamethasone to combat that issue. Get a tad dizzy sometimes, but won't drive if I think it will be an issue. Other than that, it's life as usual. Well, usual for me at least.

So, the short story: There is only one, contained lesion in my brain. My medical team is meeting to determine the best course of action. I will hear from them early next week. Depending on the course of action, I may need surgery or other treatment that will require me to be in Vancouver for a period of time. Or not. I may call in some of those very generous offers of help. Or not. Much depends on what the plan is.

Must say I'm feeling a lot better just knowing what's between my ears and that someone is thinking of doing something with it.

Will post further information as it is received.

Not Only One Seeing a Can of Worms

Many thanks to those who responded to my post of yesterday. I knew I couldn't possibly be the only person feeling this way. To those who hold a different point of view, that's okay. We're all entitled to our own opinion. Since this is my blog, however, my opinion really is the only one that counts. But feel free to offer some opposition if it does your soul good.

To clarify one point:
I fully support those who feel the pink ribbon, wearing/owning pink things, and contributing to the various cancer fund-raisers is a means of showing their support and solidarity for loved ones battling the disease. I also realize that for those personally touched by cancer, these things can be a source of affirmation, of confirming that they aren't struggling alone. I totally get that.
The point that I was hoping to make is that, for me, the commercialization of the disease - and the cult of guilt inflicted on anyone who doesn't buy into the movement - undermines any good the plan may have originally been set up to achieve.

Interesting that the CBC would pick today (the day after my rant) to air a piece about the financial crises so many cancer patients and their families face. If you missed it, check it out here:

http://www.cbc.ca/news/health/story/2012/11/01/mb-cancer-report-hardships-winnipeg.html

When you're done, scroll to the bottom of the page and read some of the comments left by other readers. More thoughts to ponder.

And here's a little tidbit of info collected back in the summer re where much of Canadian Cancer Society donations are going:

http://www.cbc.ca/news/health/story/2012/11/01/mb-cancer-report-hardships-winnipeg.html

'Nough said. It's a new month. On to other things.