How I’m doing and a bike adventure

By | September 10, 2014

I’ve been blogging a lot over the last two days, but not really talking about how I’m doing. I haven’t really said much about the side effects I’m experiencing with the Paclitaxol (taxol) and various premeds.

One of the premeds is a steroid, which certainly leaves me feeling bouncy for the first two days. I’m trying to harness that extra energy by getting lots of work done, but also getting out for exercise. Last week, I was still feeling the effects of the mouth sores from AC and low red blood counts. Yesterday, when they tested my blood it was almost at it lowest – so not surprising that I was fatigued most of last week. Today, I’m feeling a lot more energetic, but I cannot say if that is from the steroid or if it is a sign of improvement in the red blood counts. In the last round, I started feeling nerve pains on Wednesday, which got really bad Wednesday night, were eased a bit on Thursday with pain meds but worsen with joint pains and fatigue. It was pretty horrible. Things were still problematic on Friday with nerve pain, joint weakness, overall fatigue, and some neuropathy as well. Overall, it wasn’t a great week. So I’m waiting to see how things go this week. My first side effect (redness in the eyes, face, and neck) have been much less this week that last – so hopefully that is a sign that the side effects will be less.

I had hoped to get out for a 20km bike ride today. That was my goal. I choose my fastest, lightest bike (my road bike), so that there was some hope of success. I was cautious when I first started riding, and definitely felt the weakness associated with the low red blood counts but also with a two week break in significant exercise. Once I climbed the hill onto the path, I was feeling pretty good – taking it easy, but enjoying the ride. When I got to about 7km, I felt that I might actually make my 20km goal. Then at just after 8km I felt a thumping and thought I might have something stuck to my tire. I examined the tire, didn’t see anything, tried to ride again but it was worse. After another examination, I noticed a bulge in my rim. Seeing this as a sign of imminent rim failure, I turned around but soon discovered the back wheel would no longer take my weight – I was destined to walk the bike home. Fortunately, although I was 8km into my ride, I wasn’t 8km from home (my ride takes me back and forth along the path, so I pass my house multiple times). I ended up walking almost 3km.

2014-09-09 17.44.37

As I walked home with my bike, along the path, during the height of peoples’ daily commute, I was struck by the sheer number of people who slowed down to offer assistance (more than 20 people slowed down and asked if I was OK in the 30 minutes I was walking on the path). One person even asked if I needed a spare tube. It is comforting to know that if I did end up with a flat on the side of the path, that I would have no shortage of people willing to help me change my tire.

One side effect that I’ve had since the start of taxol has been insomnia and disrupted sleep. I’m finding that through the first half of the night I wake up hourly (I usually take a peek at the clock). I may feel that I’ve slept for a long time, but wake up to see only an hour has passed, and I have difficulty getting back to sleep. This repeats itself until about 3 or 4 in the morning, and then I seem to sleep for 2-3 hours. I may end up in bed for 10 hours, but only get 7 hours sleep. Last night I tried something different – I was wired up from the steroids, so rather than trying to sleep, I just stayed up and worked (wrote a lot of blog posts and answered several lingering emails). I didn’t go to bed until 2am, but unfortunately, I still found that I was waking hourly for the first part of the night. Today, with some exercise, we’ll see if that helps with the sleep. Unfortunately, it didn’t involve as much aerobic activity as I’d hoped – so not sure if it will make much difference. Hoping to get out for a ride on my ‘bent tomorrow.

3 thoughts on “How I’m doing and a bike adventure

  1. Katie Leadbetter
    Glad you got out for ride – bummer about the tire. I find that I have trouble sleeping the first about 10 days of my cycle, but I’ve been trying to physically do more (than lie around in bed) so that I’m physically more tired. Hope you start feeling better!
    Reply
  2. annie13mac@mac.com
    I’m often awake in the wee hours, and find comfort in the notion of “second sleep” or “segmented sleep.” Have you heard of it? It’s a pre-industrial age thing, apparently. So far, I haven’t been able to implement my segmented sleep hours for anything more productive than reading “The Daily Mail.” But I live in hope. So, best wishes to you, Becky, and blessings on your head!
    Reply
  3. in development
    Being on a different chemo than yours the experience is different (colorectal) but sleeping is difficult for most of my 2 week cycle. Also find the nausea, dizziness and hot flash symptoms just “happen” without warning so I’m staying off my bike for now. Haven’t had a road bike for years and my mountain bike is such a tank that I’m looking at a small tire fold-able if I can drop below 200lbs. My daughter took her dog with here when she moved so I’ve missed the daily walks but will get back to them. Once saw Hopi kid in Arizona training for basketball by running along a desert dirt road kicking and dribbling the ball which might suit me.

    Hadn’t thought about the steroids but that explains hyperness in week one and maybe the crash of week 2. Difficult to imagine a rational way to deal with this because the energy is sweet and feels horrible to waste:-)

    Have you seen this video? Crazy Sexy Cancer https://itunes.apple.com/ca/movie/crazy-sexy-cancer/id431034065 The chemo clinic had it in their library and, being a Hollywood girl, Kris Carr also has diet books. The movie was positive, silly in places and worth the watch.

    Here in the north, if you stop your car by the side of any road in the winter especially, even transport trucks that take a mile in the ice to stop will pull over. Amazing feeling. I was even the driving the company Buick once in January (minus 28 C) and a guy riding a bike wrapped in what looked like cocoon pulled over to offer help. Like Alice in Wonderland. Guy said the suit kept him warm and padded the frequent falls from the ice (which is usually sticky at the temp, but not to relied on).

    Just thought, should you carry an extra tube or a whole spare tire when you ride. I have 10 days per cycle of tingling, useless finger tips–replacing a tube? Not a chance!

    Reply

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