Update May 2019 - Living with chemo
What is certain? Death and taxes and your hair will fall out if you take Taxol (well, for most people anyway). With that in mind, I had some micro-blading done on my eyebrows (like a tattoo) as nothing says “I am sick with cancer” more than not having eyebrows. Priorities, people. Then I bought a wig and a pile of hats/head coverings to wear.
As Taxol is hard on the veins, I had a port inserted in my upper arm so that the vein can be accessed directly for blood tests or to receive injections. I sometimes forget I have this foreign object in my arm so it twinges when I bump it and I get creeped out. It is handy though, much easier than being poked repeatedly to find a good vein.
For my first chemo session, I was given chair 27 of 29. It’s a remarkably quiet room given the number of patients receiving chemo at the same time. I was a bit sad thinking back to my experiences in 1998 but, as it turns out, it Is not nearly as bad as last time. Unlike then, I do not have nausea nor have I lost my appetite. The main side effects for me are bone/muscle pain and fatigue so I have hot baths and naps. Yay naps! Extra strength Tylenol is usually adequate for addressing the pain or, if I need more, Tylenol with codeine. I had a couple of scary allergic reactions to the drug so am now on a different format.
In one of the Facebook groups for people with MBC that I belong to, someone asked when her hair would fall out after she started with Taxol. One person said after her second treatment. So, the day after my second injection, my hair (mainly the grey hair) started falling out. My wonderful hairdresser cut my hair extra short and said she would buzz it the following week. Well, then the hair really started to come out. The bathtub looked like the floor of a salon at the end of a busy day. I’ve got a lot of hair on my head but even so, it looked pretty bad as it was coming out in patches. Candace gave me a buzz cut and then I went to a hipster barber in Saskatoon and had a close shave which felt amazing. The interesting thing is that the hair starts growing back between treatments and then falls out again. The circle of follicle life. Anyhow, I am getting used to the new look although I continue to wear hats to keep myself warm. I hadn’t realized how much my full head of hair acted as a thermal cap.
Otherwise, I am getting things lined up for when I need further medical care. I have developed my Advanced Care Directives (living will) which really made me think about the end of my life. Very sobering but ultimately a useful direction for my family when it comes to that time. I’m also been connected with a palliative care team - nurses, social worker, counsellor. At this stage, I don’t require that much assistance but it is comforting to know that the team is there. Other things I need to do are look at funeral homes, services etc. I know this sounds excessively morbid but the more I think about these things now, the easier it will be for my family in the future.
For more positive thoughts, summer is coming. I am planning on enjoying the weather as much as possible. We’re renting the same cabin at Christopher Lake as we did last year. I hope this year we do not have any trees falling on the roof or bears in the yard. Just some quiet times with family. I’ve also got a short trip to NYC with my sister Verla in June and a trip to France and Italy in October. Things to keep me going during chemo weeks.
I had a conversation with Verla a few weeks ago that gave me a new perspective on where I am right now. Rather than thinking that the cancer came back after 20 years despite the aggressive treatment I received, perhaps that treatment gave me an extra 20 years. And the treatment I am currently receiving will give me some more years. I am not “brave” in doing this, I am trying to live as long, and as well, as I possibly can.
That’s it for now. I send you all my very best wishes.
Deborah
Some more articles to read.
The existential slap of knowledge of death:
An interesting take on chronic disease:
“Still, quite a few patients with some types of leukemia or lymphoma, prostate or ovarian cancer live for years. While in the 1970s 10 percent of women with metastatic breast cancer survived five or more years, today up to 40 percent do. Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.”
And my favourites, all the helpful suggestions for “cures”:
This is a lovely article by a therapist:
Finally, this is a short video on MBC done by a Canadian artist who recently died. It’s a good reminder of what is important when your time is short.
The short cut
Buzz
The wig
After the close shave. My I have a big noggin.
An obligatory cute dog shot. HOW cute is she?
Tough girl look
With Verla at the Cancer, feling jaunty in my new red beret.
