CT scan

I got a notice in the mail that I have a CT scan at 9:20 am on Dec 13th.

That's a Sunday. Not that I care.

I'd be happy to go at 4:00 in the morning if that's the only time they could take me.

Ongoing adventures of Adam & Tara

Adam's Facebook page says:

Adam is driving around Switzerland. Next stop: Zurich.

The one before that says:

Adam is in London for a weekend of 'football'. Saturday (EPL): Chelsea vs. Blackburn at Stamford Bridge. Sunday (NFL): Patriots vs. Bucs at Wembley.

Where are my postcards? I did get a rather noisy call from a pub in London though. My sister & brother-in-law were there for the NFL game as well, so the phone got passed around. I love talking to drunk people at 4:00 in the afternoon! (our time, not theirs).

More sweaters

Here are a few more sweaters that I made to sell at this weekend's craft sale.
All of this crocheting is really aggravating my carpel tunnel syndrome!

Drugs

When you have cancer, you learn a whole new language – one that includes both the generic and brand names of treatment drugs. Since my diagnosis in 1998, I have received the following:

Adriamycin (Doxorubicin)
Cyclophosphomide (Cytoxan)
Taxotere (Docetaxel) - twice
Tamoxifen (Valodex)
Femara (Letrozole)
Arimidex (Anastrozole)
Fulvestrant (Falodex)

That does not include Neupogene (a white blood cell booster), steroids, anti-nausea pills, antibiotics, anti-depressants and complimentary naturopathic remedies meant to reduce the side effects of the cancer drugs.

It looks like I’ll be starting a new drug in a few months, once they have another look at my lungs. Some of the possibilities include Xeloda, Naveline, Abraxane, Ixempra, Gemzar and Fareston.

This weird cancer language also includes terms like: tumor marker, cancer stage, aromatase inhibitor, extrogen receptor, metastases, port-a-cath, and ablative therapy. What sounds like Klingon to most people becomes common place for those of us who are riding the cancer roller coaster.

Common breast cancer terms and definitions

Cancer Survivor Inspiration video

"You don't get to choose how you are going to die. Or when. You can only decide how you are going to live ... Now"

Joan Baez

I found this quote on Daria's blog in the video called Cancer Survivor Inspiration. It's worth clicking on the full screen button.

Test results

The news from my oncology visit on Friday wasn’t great. There are two new ‘nodules’ (aka tumors) on my lungs; I believe he said there was one on each of the bottom lobes (but to be honest, I'm a little fuzzy).

The good news is that we’re not rushing back into chemo. I have no symptoms (coughing, shortness of breath) so my onc suggested we wait a few months and have another scan to see how aggressively (or hopefully non-aggressively) the cancer is progressing.

While it’s disappointing, (OK, it sucks), it didn’t come as a huge shock. The doctor reminded me that this is a chronic illness that needs to be managed. A particular treatment will work for awhile and then things will ‘flair up’, which indicates the need to consider a new drug.

The worst part is having to tell my family when the news isn't good. I talked to my sister and mom yesterday, and I just got off the phone with Adam in Holland. That's the part that makes me want to scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Note to self: Don’t get test results on Friday the 13th again

No apologies for the dark cartoon; it's my way of coping. I'm picturing myself as the person in the mask, not the chicken.


Anka dropped off some homemade soup and rice pudding so I'm going to go self-medicate with food.

Granny Fest

Despite not yet being a grandmother myself, I am part of a Grandmothers to Grandmothers group. Because several of us in the group are not grandmothers, we call our group Ammas for Grammas. (Amma is a term to address older women as a term of respect in many countries).

Grandmothers to Grandmothers is part of the Stephen Lewis Foundation’s campaign to support grandmothers in Africa who are raising their grandchildren due to the high incidence of aids related illness and death.

One of the questions on the minds of some of the people who hear about the campaign is: Why not help Canadian grandmothers and Canadian grandchildren? Shouldn't we be helping our own first?

I won’t deny that there are people in need, even in prosperous countries like our own, and we have a responsibility to take care of those who truly need our help. But in addition, I think it’s important to reach beyond our own borders and help those who are in even greater need.

I’ve seen first hand during my travels to countries like India, Nepal, Tanzania and South Africa that so many people on our planet do not have the options for assistance that we do. While it’s not a situation that I’d wish on anyone, people in need here do have options; options such as shelters, food banks, unemployment, and social assistance.

For those in similar situations in developing countries, there are very few places to turn. They have limited access to education, therefore little hope that the future will be different. If they are not able to support themselves, they die. The people that are most affected are children and the elderly – the people that the Grandmothers to Grandmothers campaign is focused on helping.

Yesterday I attended a ‘granny fest’ gathering of the various groups in the Ottawa-Gatineau region. There were workshops on group development, advocacy and fundraising, and it was a great opportunity to connect with other groups and hear about their events and challenges.

Peggy (our group's head Amma), Anka (craft-maker extraordinaire) and I also had an opportunity to test the waters in preparation for our craft sale on November 29th (more information to follow).

H1N1 Shot

I was on the fence about getting the vaccine until I talked to my oncologist. Although he did say that he didn't consider my immune system to be currently compromised, he said that H1N1 is really nasty (he's had it himself) and encouraged me to get it (the shot, not the flu).

If you are a cancer patient and decide to get the vaccine, don't bother waiting in line at one of the immunization clinics. Based on my experience on Friday, they seem to be giving them routinely to anyone with an appointment at the cancer clinic. I was in and out of there in about 5 minutes.

The nurse who did the injection told me that I might have flu-like symptoms. She was right. Along with a surprisingly sore arm (I'm used to getting a large needle in my butt every 4 weeks, so I thought I was tough), I am feeling like crap: headache, nausea, sort of achy all over. I might not have been so quick to roll up my sleeve if I had known...

If you are currently on chemo, you may want to read what Laurie was advised at Chemotherapy and the H1N1 vaccine.

Not Done Yet - Alice's review

Some time ago a group of us attended a book launch of Laurie Kingston’s “Not Done Yet”. Alice kindly offered to write a review of the book. (Thanks Alice!).

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Not Done Yet: Living through breast cancer by Laurie Kingston 2009
Review by Alice McClymont

Laurie Kingston was 38 with an active life, a family and a demanding job when she was diagnosed with breast cancer in December 2005. In November 2006 she learned that the cancer had spread to her liver. Her book “Not Done Yet” published in 2009 by Women’s Press Toronto is a very personal journal of her diagnosis and treatment, written with the utmost honesty, wit, insight and feeling. What makes the book unusual is that it is in the form of a blog with various lengths of entries and that it is a positive, witty and inspiring book in spite of the severity of the topic. Reading this book is like reading someone’s personal journal which involves the reader in the day to day life of Laurie, her very supportive spouse Tim and her two sons. Especially touching are the entries about her sons Sacha and Daniel and, as children often do, they provide some light moments in the midst of difficult times. For example when the boys are playing “pirate treasure” they find Laurie’s prosthesis in a box and ask what that pinkish. squishy thing is. When Laurie replies that it is something to make her look the same on both sides her sons retort with “ Cool”, taking it all in stride.

The book is very informative about various procedures such as bone scans, chemotherapy, ultrasounds and radiation and gives an honest account of both positive and negative communication with various health professionals. It is chilling to read about the kinds of comments that can be made by those who should know better like the medical student who referred to her portacath as a “lump” and the radiation oncologist who, when told the area radiated was still too tender for a prosthesis said ”Well, you have to wear something in public”, this the same doctor who objected to her having a different surname than that of her spouse.

The book will be of interest to different people for different reasons. To other cancer patients or survivors, the book shows how someone with a difficult prognosis can have a superlative outcome and the ups and downs of getting there. To the medical professionals, there are many hints about the importance of treating the patient with care and respect and being very careful of what one says. It is always better to look at the glass as half full no matter the prognosis. To relatives and friends of a cancer patient, the book clearly shows the importance of small gestures and kindness. As one of Laurie’s cards says “Between me and insanity stand my friends”.

As a breast cancer survivor with metastasis I particularly related to this book. I am much older than Laurie but relate so well to her love of reading and how getting into a good book can take your mind off the cancer, and like Laurie I believe a glass of wine can cure many ills. I also relate to Laurie’s wanting to write about her experience, both as therapy and to provide information to others who need positive stories. No one would choose to have cancer but as Laurie says “ my life with cancer is infinitely better than I would have thought possible”.

Laurie's blog: Not Just About Cancer

Read about Alice's journey

Thar's snow in them thar hills

It's a beautiful fall day; 13 c and sunny. It's hard to believe that there's snow in the Gatineau hills. We hiked to the ruins of the old Thomas Wilson fertilzer plant on Friday. It was a lovely way to spend the morning, before heading to the cancer clinic for my injection of Faslodex and bloodwork. People always ask how the treatments are going, but the truth is that they are pretty uneventful. The injection is quick and when I don't need blood work, they flush saline through my port to keep it open.

Sweater obsession

Anka keeps telling me I should 'break out of my box' and make something besides sweaters. She's probably right but I love working with the different colors and seeing these toddler size creations evolve. Before I finish one I'm already planning the next.
I did venture from 'my specialty' to make this hat & scarf set.

As mentioned before, these items will be on sale at the Canturbury Community Centre Craft sale on November 29th. All proceeds go to the Stephen Lewis foundation to help grandmothers raising their grandchildren in Africa.

Losing faith in cancer screening, by Julie Mason

The Ottawa Citizen
November 2, 2009

"Despite the long lineups at flu shot clinics, there are still an astonishing number of Canadians who say they aren't planning to get the H1N1 vaccine, including the usual suspects: the vaccine conspiracy theorists who think it's all a money grab by Big Pharma; the health purists who won't put anything in their bodies but reverse osmosis water and mung beans; and the thrill seekers who smoke, drive without seatbelts and bungee jump from high places."

Read the full article

Canterbury Craft Sale - Nov 29

Help! I've taken up crocheting and I can't stop! Is there a support group for this?

I've been making these sweaters for a group I belong to called Ammas for Grandmas (part of the Stephen Lewis foundation

Grandmothers to Grandmothers campaign.

The sweaters will be for sale at the Canterbury Christmas Craft Sale on Sunday Nov 29th, along with a variety of other handmade crafts and baked goods.

Date & time: Nov 29th, 10 a.m. to 2 p.m.

Hallowe'en

It was a very spo-o-o-oky night in the neighbourhood last night. The folks next door went all out with the decorations and we had fun, even thought there weren’t as many trick-or-treaters as we would have expected. Katey was an angel (but then she usually is). The dog next dog (also named Katie) was a devil, so they were quite the pair.

See more Hallowe'en pictures on Katey's blog.