Tag Archives: Factoid

Round Three

Hello folks …

Thanks to those who have written asking what is going on. Quite a bit, as it turns out.

Things have been going fairly well for me recently. The tiredness is getting a little more intrusive but still nothing too much to handle, all things considered. Cycle 3 is now finished (I am half way through) and I am in an “off” week.

I had two very long days again with Cycle 3 (10 hours and 8 hours) but I snooze away some of the morning and then read.

One thing the Cancer Agency tells you up front is “Don’t be upset because every person you interact with checks your name and asks for your birthdate. This may be within seconds of someone in the same room having asked you the same questions.”

It is true! This is part of the security system to make sure you get the right drugs, answers, blood tests, etc.

I finished a Wired Magazine – interesting article about the new data centre being built by the US in Utah, where they will store all emails, text messages, etc intercepted within the US (not strictly legal at this point, as I understand it) for Homeland Security purposes. Much time and effort going in to breaking encryption up to very high levels but they have not sorted that out yet apparently. I would think that it is a Good Thing they have not yet figured it out. If they end up breaking the encryption then everyone else will be able to do so within a very short while, and then where will we be?

I read some years ago that sensible terrorists don’t send emails, they simply take turns updating drafts using an online email server, so the information never flies through the ether.

I have been sidetracked by Johnson’s Life of London, by Boris Johnson, the tow-headed Mayor of London. It bowls along, full of fun facts and interesting observations about the city, its population over the millennia and the ingenuity, diversity, creativity and enterprise of some of the key people who lived there. Johnson’s style is akin to that of Keith Richards, whom he admires greatly (as do I, having now almost finished Life) and one can imagine him enthusiastically holding forth in person at the drop of a hat.

I learned quite a few new things not only about London but about the linguistic development of England in the first 1,000 years AD. Being raised in Scotland, where the French are always present somewhere near the surface, I was surprised to learn that French had indeed been the lingua franca in England for several hundred (different) years. Well, I guess that’s where the phrase comes from after all 🙂

I finally finished The World Without Us. A really interesting book, well worth dipping into if you don’t have time to read it cover to cover.

I bought an actual physical copy of Thinking Fast and Slow by Daniel Kahneman around Christmas but even before I was so rudely interrupted by this OC stuff I was having difficulty getting into it. Kahneman is a Nobel Laureate who worked in behavioral psychology, behavioral economics and happiness studies. I read a couple of interesting reviews and heard him on the radio so thought I would dive in. Amazon’s main summary is:

Two systems drive the way we think and make choices, Kahneman explains: System One is fast, intuitive, and emotional; System Two is slower, more deliberative, and more logical. Examining how both systems function within the mind, Kahneman exposes the extraordinary capabilities as well as the biases of fast thinking and the pervasive influence of intuitive impressions on our thoughts and our choices.

It all sounds pretty neat, and useful if you are aware of your own normal thinking processes and want to influence your decision-making in some situations by combining the methods. However I found the writing was like a scientific journal intended for academics rather than the general reading public. I suspect this book may be the Brief History of Time of the current era. Bought by many, read by few.

Side Effects
There continue to be very few physical side effects so far. I have started to experience neuropathy, which is reflective of damage to the nerves in your extremities, caused by the Taxol. I had about five evenings of tingling feet and fingers. It has gone away now and will generally stop altogether when the chemo stops, although it can get a lot worse for some people as the chemo progresses.

I changed my anti-nausea drugs from a steroid to a non-steroid medicine. I have to take it for longer, and it has some unpleasant side-effects if not properly managed, but I am hoping this will have a less negative effect on my brain. We shall see …

I have had fairly in-depth experience with the BC Cancer Agency over the last few years and it is clear that the interaction with this particular patient has not been as helpful as with Velda or Alex. We are not particularly taken with the oncologist assigned to me. While she may be very well qualified she does not have a good “bed-side manner”, is not communicative and tends to shrug off just about everything we tell her. She did admit that, while Vancouver has the best results in the world for OC, the treatment protocols are arbitrary and they know very little about the disease.
“We don’t know if six Cycles are better than four, or the other way round.”
“OC is very unpredictable.”
“We don’t know why there are so few people diagnosed at Stage 1 or 2. It may be that there is a different mechanism at work.”

This shows an open honesty about the process but getting any information has been like getting blood from a stone and it makes it very difficult to make informed decisions. I have requested a “second opinion” from a different doctor on the topic of chemo brain. This may be read as code for starting the process of changing the assigned oncologist. Having said that, I can call the Cancer Agency and speak to a nurse 24/7 and during business hours I can call the pharmacy or a counselor or any of their other services. If I end up leaving my name and number I am called back very quickly. Quite impressive.

In other news, Alex continues to experience difficulties related to a still undiagnosed inner ear problem. We hope to see a specialist sooner rather than later about that.

My parents recently sold their house on Vancouver Island and we are assisting them in looking for a place to live in the Greater Vancouver area.

All in all there is a lot on the go! I realise that I have not answered emails from many of you and to be honest I find it difficult to get to much as I am easily distracted and quite slow at everything. However, I love hearing from you and WILL get back to you one day in the not too distant future.



Two Down, Four More To Go

Hello folks …

This has turned out to be quite a long post – feel free to bail out of it.

Since last we spoke the big thing that has happened is …

The Hair
Right on schedule the hair started falling out 14 days after the first chemo treatment. Now, I am not sentimental or emotional about my hair; I wear it short anyway and losing it has never been an issue for me. I tried to manage the process for the first few days but it is really impossible. It comes out in clumps when you just touch it and makes a hell of a mess everywhere. So the headgear has to go on as soon as the shedding starts.

I had my head shaved to about 2mm in most places but vainly left a Mohawk (I know, laugh if you like – I did) having seen a very sharp young women on the ferry with a similar crop. It became apparent to me in the hairdresser’s chair, as soon as she ran the mirror round the back of my head, that I was not going to look anything like the woman I had seen. For a start, sleeping on my back had caused ALL the hair to come off in a ring round the back of my head, and it was gone in patches around the place so I looked quite appalling. In addition, it turns out that my head is indeed pointed, as affirmed by my mother for the last X years. Actually, she uses the term “pinhead” but that’s another matter. So all in all, it was quite pathetic. However, not wanting to risk any injury (a potentially serious issue right now) I did not go for a complete shave but left things as best the hairdresser could do them. Over the last week much more has come out and I look more “normal” now in that there is almost nothing left! Pretty much all your regular hair disappears – arms, legs, etc – although eyebrows and eye lashes often remain, depending on how you respond.

The main benefit of shaving the head is that only very tiny pieces of hair come out, which are easily washed down the drain. Also, now that summer is here, it is actually very comfortable. However, I wear caps or sun hats when outside, to protect my scalp and also the general public, who still seem to need shielding from the sight of middle-aged women who are doing chemo – as opposed to middle-aged women who are making a political statement about something.

I went to a wig store and was horrified at what was on offer. Nothing looks like me at all and I am having a hard time coming to terms with the concept. We shall see if I give in later on.

Chemo Time
My last two sessions ran 9 hours each. They change shifts and then jokingly ask me to turn the lights out when I leave. It appears that the port in my abdomen may be installed badly, or the tube descending from it has twisted inside. In any event, what can take an hour for some people is taking three hours for me. So when the chemo and the saline solution are added together there is a basic six hours of drip, excluding the pre-drugs and the 3 x 15 minutes of lying in odd positions on the gurney at the end of it all.

The shortest chemo administration done at this facility is 2 seconds. Yes, seconds. The drugs vary in their toxicity and have to be administered “in under an hour”, “over two hours”, etc. and I have seen a couple of patients with periods as short as ten minutes.

I look as if I am going camping for a week when I arrive at the BC Cancer Agency what with my stack of reading material, my iPad, my cooler with my lunch and snacks, my thermos of iced decaf coffee and chocolate milk, and my bed roll. For this second Cycle I took my compressed foamie with me, to lie on top of the very uncomfortable gurney. What a difference that made – wonderful!

I am my own little biohazard! On chemo days and for three days thereafter I have to be treated with extreme caution owing to the chemicals floating around in me. Bodily fluids should not be shared in any way!

It is fair to say that I have some not great days after each session and can get quite tired from time to time, but overall I think it is going well.

The Stone Diaries, by Carol Shields
I rarely read fiction unprompted, which is one good reason to be in a book club even though we don’t always choose fiction. I usually enjoy the books selected by whomever is hosting us that month. We only have five in our club right now and the second (but not secondary) benefit is to chat and spend time with really interesting, widely-read, widely travelled, intelligent people. Wonderful!

Your Brain After Chemo, by Dan Silvermand and Idelle Davidson
A rather terrifying book, with no real answers but lots of anecdotal and medically researched evidence that the brain may be a while coming back to normal.

The World Without Us, by Alan Weisman
Still have this on the go as it continues to be fascinating, but it has dropped down the pile a bit owing to the exigencies of life.

Wired Magazine
I’ve been catching up on several months’ worth of partially read magazines. Was able to clear off three of them during the last chemo session and now another has arrived! Very interesting to read, with a slightly different take on techology and the technological world. My father (84-50/52) loves it also!

The Globe & Mail and the Sunday New York Times of course.

The Missing Ovary Has turned Up!
Note was taken of the missing ovary last month and a revised pathology report now says:
On review of the specimen, a small amount of material that may represent ovarian cortex is identified. This is histologically unremarkable.
“May represent”??? Thus ends my woman-hood, with a bit of a whimper by the sounds of it.

Steroids are funny things. They are given, in this case, as an anti-inflamatory and I get a 48 hour dose of them with each chemo. A red, puffy face is the outward manifestation but they wire you up so you have tons of energy and think “Chemo, schmeemo, let’s paint the outside of the house and so what if it is 2:00 am”? They also give you the munchies, not in a “bag of chips/crisps” sort of way, more a “five-course dinner” kind of way. This leads to swings of six or seven pounds in weight over the week, up and down again.

I have been cutting back on sugar a bit, not that I consumed huge amounts but still … I’ve found it easiest to do this when I’m drinking lots of water. Unfortunately, one of the few continuing side-effects I am experiencing is a taste in my mouth as if I hadn’t brushed my teeth in a week and it makes most things taste pretty grotty, water in particular. I have to chug it down anyway to get the chemo through the body and out.

We are eating even more vegetables and I am eating dates (which I love, all natural sugar there, right?) and dried apricots and apples. I just don’t like most fruits but I love vegetables.

Travel and Entertainment
Our weekend in Seattle was great. We stayed with Kristin and her 6-year old daughter Aliah and they will come up to Vancouver next month for a visit. Met some very interesting people at her jewellery show.

I went to the Bard on The Beach production of Macbeth last week, with Kate and Helen. The first disappointing production in 20 years 🙁

The Celebration of Light started this weekend and we may go downtown to Alex’s old building later in the week, where a friend hosts three fireworks parties (one on each night), overlooking English Bay and the firework barge.

Next weekend is a long weekend as Monday is BC Day. It is also Vancouver Pride Weekend, with its parade, street parties, deck parties and lots of fun activities for all the family. The town is packed with revelers from the Vancouver area and Washington State, both for the Fireworks and Pride.

Olympic Opening Ceremonies
I have to say I enjoyed the Twittersphere and Facebook commentary rather more than the actual event. Way too busy for my liking and I was grateful for NBC’s explanations as I don’t think I would have figured out what was going on without them.

That’s all for now folks! Thanks to everyone who has written recently – I really appreciate all the support and I think I am able to reply more swiftly to each of you individually these days.