Good news for Jilly-Bean!

The last few days have been pretty stressful for my friend Jill. After having a mammogram last week, they called her to go back in for another look. She was understandably anxious (OK, she was a basket case), so I met her at the Women’s Breast Health Centre for her appointment. Marylou unexpectedly showed up in the waiting room as well.
There was lots of reason for celebration when it was all over and the technician said that everything looked OK.

As you can see from her picture, Jill was pretty excited about the news. She had to rush back to her home daycare, so Marylou and I went out to lunch to celebrate for her! :-)

As for me, I had an appointment this afternoon in the chemo room to have my portacathe flushed. It has to be done once a month so it doesn't clog up. I really should have my own parking spot at the cancer centre. Who do I talk to about that?

Am I terminal???

One of the members at Curves in Fort Erie, where my Mom is a regular attendee, recently decided to have a fundraiser to raise money for breast cancer research. This is the write-up in the Grimsby Lincoln News about the event:

Fort Erie resident Pauline Wilson got a manicure from aesthetician Kadie Lidbetter at a fundraiser at Curves last Saturday. Janice Rivest of Stevensville is a member at Curves on Garrison Rd. and her daughter, Christine Lynds, has Stage 4 terminal breast cancer. Curves offered free manicures, massages and makeovers, with all donations going toward Lynds' cancer treatment.

My poor Mom was mortified that they listed me as ‘terminal’. It made me think about the meaning of the word and how I felt about it.

Cancer has a whole language of its own. Those of us who have been through the ranks throw around terms and sometimes forget that others aren't as immersed in the cancer world as we are. It’s even confusing for those of us who are in the midst of it: someone once told me about a woman in a support group for metastatic patients who asked if she was still a ‘survivor’ even though it came back.

For the record, I think of myself as ‘incurable’, not ‘terminal’. I also think of myself as a ‘survivor’. Here are some definitions of cancer terms, some that I took from the Breastcancer.org dictionary and some are my own interpretation. There are hundreds (probably more like thousands) of cancer terms, so I only listed some of those that apply to my own situation.

Just for a laugh

Do you sit unnoticed on the sidelines while others are picked?

Try the latest scarf fashion and you too will be the center of attention:

When you're a cancer patient, there's a lot of waiting

Waiting has to be one of the hardest things about having cancer. Sometimes it’s even harder than getting bad news. When you know what you’re dealing with, at least you can take action, make a plan, get organized. In the meantime, you are stuck in limbo with your worse-case scenario thoughts.

After being called back for a second look after a recent mammogram, Jill is now anxiously waiting for the next appointment and, more importantly, the results. Judy went through a very stressful time this winter, waiting for test results. (I’m happy to report all is good!). Sue Hendler is waiting to start a new cocktail of chemotherapy and writes about it in her column in today's Kingston Whig Standard.

Read today's collumn.

If you would like to read other columns by Sue Hendler, click on her name below after "Labels".

When in Rome...

I get tired of writing about cancer, but I don’t have much else going on these days to write about. So I’ve resorted to stealing pictures off Facebook so I can write about my son’s fabulous life.

Adam and his wife Tara are living in the Netherlands and take the opportunity to travel whenever they can. Last weekend they were in Rome; next weekend they are off to Morocco. They are taking advantage of this time while they are childless (and I am grand-childless – no pressure!) to see Europe. I am so happy for them that they have this opportunity and are having great adventures together.

But I do miss them lots...

First shot of Fulvestrant

Just back from my first injection of Fulvestrant (brand name: Faslodex). Finally! I’m on a drug that has the potential side effect of loss of appetite! It was pretty uneventful – just bend over the table and get a shot in the bum. So far, so good.


I was happy to see my own oncologist, Dr. Stan Gertler, for the 2nd visit in a row. He’s been my oncologist since 1998 when I was first diagnosed. One of the things I like about him is that he has a good balance between compassion and honesty.


This is the look I’ve been sporting lately. I go bald around the house, wear scarves when I go out, and save the wigs for special occasions. In this particular fantasy, I look mysterious and international, rather than like a sick lady with a bad turban on. :-)

Meditation Procrastination

Before Christmas I wrote about making a commitment to focus part of my day on self-care. Here is the schedule I set for myself:

9:00-9:30 yoga stretches

9:30-10:00 meditation

10:00-11:00 plan food for the day, cook, juice

11:00-12:00 walk (or some other form of exercise)

I’ve been good at planning my food (although I’ve abandoned the juicing for now) and I try to get some form of exercise every day (today I walked for 40 minutes). The stretching has been hit-and-miss.

Where I’ve really dropped the ball is meditation. I know that it is one of the best things I can do for myself. In addition to the benefits to your mental health, many experts claim that meditation can play an important role in cancer recovery. It enhances the immune system and increases the activity of ‘natural-killer cells’, which kill cancer cells.

So why do I procrastinate and go for days without doing it? (There are lots of websites on the net that offer meditations for procrastination, but of course you have to get to the meditation first. See my dilemma?)

I think it needs to become a habit, just like brushing your teeth. Tomorrow I’m going to try meditating before I go downstairs for breakfast. If anyone has any other suggestions, I’d welcome them.

Saturday WRAP Group

I’ve still been getting out with the Saturday WRAP (Walking, Running and Poling) group most weeks. Some of us have been strapping on the snow shoes and walking along the river.

Most Saturdays have been sunny, but we’ve had a few cold mornings, as you can see from the picture.

Can you guess who it is? Hint.

Happy Birthday to Jennifer

My dear friend Jen and I have been on many adventures together since we met several years ago (8? 9?) on the Busting Out dragon boat team. We've climbed the great wall of China, travelled in Vietnam, rode a hot air balloon over the Seringetti, biked in the Netherlands, visited a nude beach in Spain (by accident!), kyaked in Georgian Bay, participated in running events in Disneyland, and explored the Gatineau hills on foot, skis and snow shoes. She even carried my luggage when we went on safari in Tanzania a month after I had lung surgery. Now that's a good friend!

Happy birthday Jen and many more to come.

Fulvestrant

I went to the pharmacy today to pick up a prescription for Fulvestrant, in preparation for my first injection next week. $659 later, I reviewed the drug information that came along with it. Possible side effects listed include: pain/swelling/redness at the injection site, nausea, vomiting, loss of appetite, constipation, diarrhea, upset stomach, dizziness, tiredness, weakness, headache, body aches/pains, flushing and sweating (hot flushes/hot flashes), or trouble sleeping. The only one I am hoping for is loss of appetite!

Yes, you lose your hair EVERYWHERE during chemo

I really miss my nose hair.

I have to take tissues everywhere because my nose constantly drips.

Not a lot like when you have a cold; just enough to make it really annoying.

Let your WHAT shine?

Peace, love, light.
Blah, blah, blah.

Earlier today I wrote about letting my light shine. And then I got pissed off with the photo machine at Shoppers because it lost my prints and I totally took it out on the little guy behind the photo counter. I think I let my inner bitch shine! Beware, cranky cancer chick on the loose!

Oh well, tomorrow’s another day...

Who am I? More specifically, who am I now? by Sue Hendler

In today’s column in the Kingston Whig Standard, Sue Hendler writes about how cancer changes how we, and others, see ourselves. She interviews Susan Babbitt about what’s different for her since her diagnosis of sarcoma five years ago.

Sue’s article made me think about the changes in my own life since my own diagnosis. I’ve heard people say that they are "grateful for their cancer" because of all of the great people and opportunities it brought into their lives. I want to go on record as saying I am NOT grateful for the cancer (and I think Sue and Susan share that thought)!

However, I do think that I have taken a shitty situation and found a way to cope and even make my life better, as have so many other cancer patients. I’ve connected with good people and have worked hard to find meaning in the muck. The cancer hasn’t taught me anything or added to my life. But I have learned so much through the process.

My new identity is so much more than ‘cancer woman’. I hope that I’m a better person, not because of the cancer, but because of how I’ve faced the challenge. And I identify with Susan’s comment in the article, that she’s “in love with the day-by-day ordinariness of my temporary existence”.

If you would like to read other columns by Sue Hendler, click on her name below after "Labels".

You are the light

I have to admit that I’m not a big fan of inspirational emails with pictures of angels and kittens. However, if you have a few quiet moments, the Light Movie is beautiful and has a lovely message.

I plan to let my light shine today. How about you?

Let It Go and Life Is Good

Someone emailed me yesterday and asked how my spirits were. I wasn’t sure how to respond. If I say ‘great’ it sounds like I’m in denial, over-medicated, or just trying to make others feel better. How can my spirits be ‘great’ when I have metastatic cancer?

Yet I can honestly say that I’m doing well emotionally. I’ve had times in my life when I was a bit of a mess (breakups, work stress, bad hair cuts). But I find myself at a place in my 50s where I’m more at peace with myself than I’ve ever been before. (Why did it take 50 years? Youth is wasted on the young!)

That’s not to say that I don’t have ‘down days’. Or that I don’t wake up in the middle of the night sometimes and let my thoughts get away on me. Or that I don't get bloody tired of all of this cancer crap.

But despite the cancer, I can honestly say that I am enjoying my life. I just came from my yoga class with other breast cancer ‘thrivers’ and the teacher had us doing a smiling meditation. A few people had been away, so we went for coffee afterwards and got caught up. As always, we laughed – a lot. It's the simple things, like being with good friends, or being able to breathe out the toxic thoughts in a yoga class, that make me feel content.

I know I’ve said this in previous posts, but it's worth repeating: life is good! Maybe that should be my mantra. A friend sent me a message today saying that she keeps saying ‘let it go’. During my next mediation, I’m going to think Life Is Good on the in-breath and Let It Go on the out-breath.

Namaste

Applying for LTD

A courier delivered LTD forms to me today. My sick leave runs out in early April, so I have to apply for Long Term Disability. Last September, I went from a full-time job that I enjoyed, to putting the focus totally on my health when I started my treatments. Work just hasn’t been on my radar.

So I was a bit surprised at my reaction when I started to fill out the forms. The truth is that I love my job in HR at Carleton University and the people there are great. I know going on LTD doesn’t have to be permanent, but changing my status as an employee feels like an official change in my life.

My oncologist’s plan is to keep changing my treatment so the cancer doesn’t get too used to any one drug. He said the best way to manage it is to keep surprising it, because the cancer starts to find ways to outsmart the drugs after a period of time.

That leaves me not knowing what’s ahead. It depends on how I respond to each drug and how long it is effective. It’s a bit hard to plan your life with such looming uncertainty. I try not to think too far ahead, so I guess work is just one more thing that I will have to figure out as I go.

BCA Newsletter - winter 2009

The Breast Cancer Action newsletter for winter 2009 is now available online. If you live in the Ottawa area and are not a member of BCA, you might consider joining. For a $40 annual fee (which is tax receiptable) you will have access to special exercise classes, lympedema workshops, information evenings, lunch & learn sessions, Tai Chi classes, dragon boating program, book reading club… and so much more!

Living Each Day to the Fullest

It is only when we truly know and understand

that we have a limited time on earth

and that we have no way of knowing

when our time is up

that we will begin to live each day to the fullest,

as if it were the only one we had.

Elisabeth Kubler-Ross

You know you are obsessed with food when...

It’s 9:30 a.m. and I know everything I’m going to eat today. Not only do I know what I’m going to eat, it is all prepared and in containers in my fridge.

I have had a long love affair with plastic food containers. (Remember my pill container?) I stick to the same brands so they stack neatly in my cupboard and fridge. I seriously considered boycotting Ziplock and writing them a letter when they changed the style of my favorite containers so they no longer fit into the previous design. How could they do that? Don’t they know the stress they caused to me and other anal people like me?

This is a picture of one of the shelves in my freezer. (No Mom, I haven't defrosted it yet). There is something gratifying about having everything orderly, labeled and recorded on a master list in my kitchen. (Is there a support group for this?)

I’ve been trying to get control of my eating during my treatments. I’ve considered vegetarian, vegan, raw food, low dairy, no dairy, macrobiotic and, my favorite, ‘give up and binge’. Due to that last choice, along with Taxotere, steroids, emotional eating, mild nausea and too much time on my hands, my diet has ended up being inconsistent and I’ve gained weight during my treatments.

I’ve joined Weight Watchers so many times that I should get a free pass every 10 times I join, but I have to admit that I’ve always eaten very healthy when I was on the program. So, starting today, February 1, I’m going to try counting points yet again.

Maybe if I combine two of my obsessions: 1) organizing things into containers and 2) food, it can help me to get control of my eating. Not only am I going to plan my menu for the day, I am going to prepare my meals ahead of time and store them in the fridge, ready to heat and eat.

These are my meals for today - breakfast, lunch and dinner. I put the lid on the plastic containers, stack them in the fridge & microwave what needs to be heated (against the advice of the author of "Balance", who says that microwaving food is a huge no-no). No, the plastic doesn't go in the microwave; the plates inside the containers are glass and that's what gets heated up.

I think I might be on to something here. It's what celebrities do, only they have a chef or delivery service do the work. I could turn this into a diet book! I think I’ll wait to see how I get through the week before I contact Oprah to appear on her show.

Maybe next week I'll show you my linen closet...