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 …
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.
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.
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.