Visit with my sister

I haven’t been writing much lately. I’ve alternated between being very busy and resting/recovering.

I’m beginning to realize why they give you a week off Xeloda after two weeks on. I think the side effects start to kick in after two weeks, because I seem to experience more on the weeks off. I've had my share of nausea and 'the-fast-poopies' this week (too much information!); also some abdominal pain.

The good news is that my feet and hands are still doing OK. Anka gave me a pedicure last week (complete with flower decals) and I’ve been putting castor oil on my feet at night (and then socks because it stains), thanks to a suggestion Krystyna sent me from bcmets.org.

My sister Nadine was here for a few days last week. She lives in Alberta so it’s been good for us to be together to talk about how my illness is emotionally affecting both of us and to just hang out. It might be just one person that actually has the cancer, but it affects the whole family. I really felt like I needed my sister, so I'm so glad to have this time with her.


I thought I should explain why she has a huge bowl of food in front of her in the picture... Nadine is a fabulous cook and she made a wonderful chicken salad so I made her pose with it. It was yummy and I had enough for another meal after she left!

What I’m grateful for today: That Nadine’s coming back on Wednesday for part 2 of our visit!

Update on Decadron and voice amplifier

Did I mention that Decadron makes me CRAZY? I'm getting the Cabbage Patch Doll puffy face, eating like a weight lifter, tired but can't sleep - all side effects from this lovely little pill.

Jen heard back from the nurse and the good news is that I can start to wean off it. I'm already taking 1/2 a pill twice a day. I'm supposed to take that down to 1/4 a pill for a few days and then an 1/8th. Not sure how I'm going to cut that little pill in 8, but I'll figure something out. Maybe if I just lick it twice a day, that will do it.

Dr G has referred me to a speech therapist to see about getting a voice amplifier. I don't think I really need an appointment; I'd just like to know where I can buy one here in Ottawa so I don't need to order it off the internet. Thanks to everyone who passed on leads. I'm getting closer and should have something soon that will make having a conversation a bit easier and not so tiring. Dee pointed me to the Cheeky Librian's blog and she is using something called the Chattervox.

Jennifer also asked the nurse if I could email my questions, but it sounds like that's not an option. It's hard to call when I have questions, so I'm relying on Jen and other friends to help me out when I need 'a voice'.

This is my 2nd day without taking Xeloda, so I'm not sure why I'm feeling nauseous. The nausea isn’t bad, but I usually feel it in the afternoon so I take a Stemitil.

Jen left a message for the PDN (personal designated nurse) about whether to continue taking the Decadron (steroid) during the week I’m off Xeloda. Also, she asked if there’s a way I could email with questions rather than called.

And one other thing, she asked if I could be referred to a speech therapist about finding a voice amplifying device to make conversations easier on me, especially in public places. I bought a small white board at the $-store today and may resort to that at times when I’m having a hard time being heard. It was either that or an etch-a-sketch.

Speaking of whiteboards, I once taught a course where I started off on the wrong foot by using a permanent marker on the white board at the front of the room. What made it worse what that what I wrote was… my own name! So there was no question who the idiot was that used the wrong marker, at least for a few days until I found some solvent to remove it.

Here's what I think I'll write on my mini-whiteboard in permanent marker.

What I’m grateful for today: I now have a cleaning lady! I just came back from walking the dog and she was cleaning the oven. (I sort of forgot that you were supposed to clean that thing).

First round of Xeloda finished

I just took my last 3 horse pills (aka Xeloda). I've been on them for 2 weeks and now I have a week off before starting the cycle again. I've only had some mild nausea but the Decadron (steroid) is still making me crazy. The doctor said we'd know fairly quickly from my symptoms if the chemo is working, but I'm no seeing any improvement in the voice, coughing or breathing.

What I'm grateful for today: A short nap on the deck this afternoon in the shade

Roid-rage

It's 4:20 am and I can't sleep. I have what Sue Hendler used to call 'roid-rage'. Decadron makes me kind of manic.

What I'm grateful for today: No real side effects from the Xeloda yet. The hands and feet are looking and feeling great so far. I haven't had to take a nausea pill yet and only a hint at what we referred to as a case of the 'fast poopies' when I was travelling in Nepal.

(Sorry, but bowel movements become a normal part of everyday discussion when one is going through cancer treatments.)

A shit-storm of bad news

On the tail of losing friends Meridy and Mary in a few short weeks, I received the news on Friday that I was dreading about my lost voice. It turns out that it is cancer related after all.

There is cancer in the lower trachea and the bronchus leading to both lungs. My understanding is that the cancer is pinching on the nerves that go to my larynx, which is why I have lost my voice. The plan is to start on Xeloda, an oral chemotherapy drug, on Monday.

What I’m grateful for today: Anka, for listening and letting me cry on her shoulder this weekend.

Steroids

I started taking Decadron (Dexamethasone) yesterday – not my favorite drug. It usually makes me manic and affects my sleep; after all, it is a steroid. Also, one of the side effects is WEIGHT GAIN (shoot me now!).

Hopefully it will give me energy to get some things done around the house, but in this heat, I’ll probably have to resort to other outlets – like incoherent blog postings.

I’m attending a New German Medicine retreat at the Carp Wellness Centre this weekend. It will be interesting to see how steroid-hyperness and sessions on meditation and spirituality mix. I don’t want to share bunk beds (4 to a cabin) with strangers so I’m going to Dianne’s for the 2 nights and Katey will be there during the day. I’m sure Dianne and Brian won’t mind me using their pool at 2 a.m. to work off my steroid agitation… :-)

What I'm grateful for today: My basement 'guest suite'. It was so hot last night that Katey and I slept down there because the temperature was noticeably cooler.