i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

and so it begins

Received September 6:

Hi Laurie,

Would you be interested in guest blogging for us in October? I have some fun ways to make it a great partnership for both of us AND for the fight against breast cancer. If you're interested, let me know and I'll send you the proposal!

Julia Fikse
Creator/President

Ta-tas® Brand www.savethetatas.com
Laughter Heals® www.laughterhealsgifts.com
Save the Ta-tas Foundation www.savethetatas.org

Sent September 8:

Dear Julia,

No thank you. I suspect that you didn't really look at my blog before making this offer. I have metastatic breast cancer - long past the stage where "saving the ta-tas" is an issue.  I may have lost a ta-ta (despite your best efforts) but I am alive, which is what matters.

Also, while I do  have a pretty good sense of  humour, I don't find your products to be amusing (actually, I find those in the men's section to be distasteful and insensitive). I'd prefer to encourage my readers to donate to organizations that really make a difference and use all the funds (as opposed to 5% of sales) for advocacy, awareness, research and building community.

very sincerely,

Laurie

free to a good home (part 2)

A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:

Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.

Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."

Imstell jumped in with the following:

"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:

FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.

WANTED swimming prosthesis. Any size large enough to hide my belly.

These had me laughing out loud but I think we might actually get something like this going.

Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.

Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.

We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.

free to a good home

It's not the kind of thing I'd want to advertise on Craigslist or Kijiji.

I can't set it out on my front lawn and hope someone takes it away.

I doubt the Canadian Diabetes Association or the Ontario Federation for Cerebral Palsy would want it as part of their drive to collect use goods for re-sale.

But I have a perfectly good prosthesis, worn only a handful of times that I'm sure someone could use, even if it was wrong for me (and I have replaced it with another one I don't seem to be wearing much).

The government covers about two thirds of the cost of a new prosthesis. That balance must be prohibitive for many who don't have private insurance to take care of the rest.

How do I find someone who can use it though?

Maybe someone at Breast Cancer Action would know.

Of course, I could always use my prosthesis to make art, the way Jacqueline did.

I think my inclinations might be a little more violent, though.

Thoughts?

my new rack

Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.

a lapse in judgment

In the last couple of weeks, I have received two emails from Rethink Breast Cancer, an advocacy organization aimed at younger women. The messages urged me to by tickets for the Rethink Romp, a Toronto fundraiser and party.

I like a party as much the next girl and the idea of a superhero themed party made me smile. I love superheroes.

I eagerly clicked through to check out the "Shazamer", an interactive site where I could make my own superhero. At that point, the fun came to a screaming halt, as I read the words: "Show of your six packs and your great racks in support of Rethink Breast Cancer".

It's a great site, with some really cool interactive features but the model is built like Barbie and the "Superheroes" title bears the sub-head "with a great rack comes great responsibility."

The idea that a group of diverse, smart breast cancer advocates sat around a table and decided that this was a good idea is just inconceivable to me. Even more shocking is that this idea went from that table to a high profile, glossy campaign without someone shouting, "Hey wait a minute! Don't you all think this is a little insensitive?"

Yesterday, I sent Rethink this brief email:

Has no one complained to you about this?

A breast cancer organization talking about "great racks"? What if you only have half a rack or none at all? Can I still be a superhero if I'm not white [I did discover after I sent the note, that you can change the skin colour of the model, once you get inside the game but both the male and female superhero start as fair and light-haired] , with big boobs and able-bodied?

I love the idea and I love the spirit of fun and celebration to which you are clearly aspiring. I just don't understand how a group of breast cancer advocates sat down together and agreed that this is the best imagery and wording for this event.

So disappointed.

I haven't heard back yet. Rethink Breast Cancer has a great mandate and does good work. I love the spirit of fun they try and inject into their work. With this campaign, though, the organization has displayed a serious error in judgment.

super me
a one-breasted warrior
with really great boots
a rhea belle top
and some seriously funky accessories (thanks to Babz for that suggestion)
generous hips (the better to shoot from)
crows feet
and smile lines
honest
smart
strong
and always compassionate
but ready to kick ass
when she needs to.

has anybody seen my boob?

As anyone who has ever been to my house can attest, the place tends to be a total disaster pretty cluttered. We lose stuff all the time, only to find it months or even years later, after it's already been replaced.

But I have to admit that never in my wildest dreams did I ever think I'd find myself typing this sentence: 

I can't find my prosthetic breast.

We've actually been making some inroads in terms of beating back the clutter. But some rooms are getting worse before they get better. And our bedroom is complete tip.

Now admittedly, I don't wear my prosthesis all that often. But there are days when I want to fly below the radar. There are clothes that just look better when they're symmetrical. And I haven't seen my fake breast for weeks.

Could I have absent-mindedly stuck it in a drawer that I haven't checked?

Could it have become mixed up in the bags of clothing destined for donation?

Could it be under the mounds of clothes yet to be sorted?

Could I have left it somewhere?

It's a mystery.

If you find it, please let me know. 

Or just leave it in my mail box.



Update May 26: We found it! It was in a suitcase. In our bedroom. From a trip on which neither I nor the boob were in attendance. I think I took it off one night and too lazy tired to put it away, popped my bra with the boob still in it, in the open suitcase. Then, the suitcase was closed and left. Three weeks later, when my love finally unpacked - he found my prosthesis. Mystery solved.

Angelina Jolie, mastectomies and choice

People keep asking me what I think of Angelina Jolie's prophylactic mastectomy and subsequent op-ed in the New York Times. I've let my thoughts simmer a little before putting them into words. It's hard not to react viscerally to such a dramatic story.

I wonder who'll play Angelina in the movie?

First and foremost, I want to say that what any woman does to her own body and to preserve her own health is her own damn business. Unless we are in her exact pair of shoes there are limitations on the right to comment. 

Secondly, I think Ms. Jolie's choice to go public, especially given her status as a Hollywood sex symbol, is very brave. Having a mastectomy is shame-laden for so many of us and discussing the procedure openly does a great service. I love that she chose to emphasize how, most of the time, the mastectomy is not major surgery and recovery can be fairly smooth. A woman without her "natural" breasts can adjust and go on living her life as she did before - even when her husband is Brad Pitt and what she did before was star on the big screen.

I think that Ms. Jolie made the right decision for herself, based on her situation and the resources at her disposal. How do I know it was the right decision? Because she is happy with it.

That being said, I do have a few things I need to get off my (ahem) chest. These are my thoughts, in no particular order:

• The vast majority of women would not benefit from genetic testing. We have no family history of breast cancer and do not belong to ethnic groups most likely to carry the gene.

• Immediate reconstruction is not an option for some women, nor is it the norm in Canada. For some of us, reconstructions is never an option, for physical or economic reasons.

• Reconstruction is major surgery. Some of us would never put ourselves through a much more serious operation, that may not be successful, just to meet a societal definition of "beautiful", or even "normal."

• The kind of nipple preserving surgery Ms. Jolie had is still new and not yet widely offered. In Canada, a group called Be The Choice is trying to change that. Melanie Adrian,the founder of Be The Choice had to see many doctors and fight hard to obtain this procedure for herself in 2011.  

• Many women do not have the resources to get the quality of care that made the process so easy for Ms. Jolie. Even in Canada, where we have theoretically universal health care, there are geographic and socio-economic discrepancies that affect treatment and recovery.

• Access to testing is also very restricted, largely because the BRCA1 and 2 genes (the ones that can mutate and cause breast and ovarian cancer) have been patented by a company that restricts its use and ensures that the cost remains high. The patenting of genes is an odious and frightening practice. I'll elaborate on that and share some resources in a future post.

Every woman needs to make her own decision about prevention, surgery and treatment. What we all should agree on is that these decisions ought never to be restricted by available resources, ignorance or the greed of big corporations.

Want to read more? Here are some of my favourite posts, offering insight from different perspectives:

"Still Boobless", on Insert Boobs Here, a blog by Sarah Merchant who was diagnosed with metastatic breast cancer at 28.

"Angelina Jolie's choice not the only one" by Joan Walsh, on Salon.com.

"Angelina Jolie's Bilateral Prophylactic Mastectomy - If She &  I Could Chat", on Nancy's Point, by Nancy Stordahl who lost her mother to breast cancer in 2008 and went through the illness herself in 2010.

"Preventative Mastectomy: Angelina Jolie's Very Public Choice" on BlogHer by Contributing Editor Laurie White.

10 to do in May

For the last few months, I've been playing along with a group of folks over at BlogHer who've formed a group called "List Lovers Unite." I'm a sucker for "to do" lists and I've found the practice of making monthly to do lists to be rather compelling.

Sticking to the list, however, has yielded mixed results. Here's how I did with April's list (as with previous months, completed tasks are in blue, partially done tasks are in green and the tasks I didn't even started in purple):

1. Write a first draft of the short story I've been kicking around. (I wrote an outline)

2. Spend an average of eight hours writing per week. (Not even close)

3. Do strength training at least once a week and continue with the five hours of cardio per week. (I'm very pleased to have started the strength training, which I did, for at least a few minutes, five times in four weeks. I fell a couple of hours short with the cardio, though. I need to remind myself on rainy days that I'm not made of sugar).

4. Sort through my clothes (carried over from February and March). (I bought some clothes but my closet is still overflowing with stuff I can't or don't wear).

5.Make summer plans for my family. (we are going to Blue SkiesMusic Festival this year and have tentatively planned another couple of trips but I have yet to sit down with a calendar and nail it all down)

6. Brush my big (shedding) dog once a week and my smaller (non-shedding, tangling) dog every other day. (I brushed the big dog once and the little one twice. I did take Lucy to the groomer on Tuesday, though. She's been shorn now, so now I really only have ears and tail to brush for a while)

7. Update my Ravelry project page.

8. Finish another scarf.

9. Make soup twice. (the jambalaya in the slow cooker when I wrote last month's post was the only soup I made. It was a good one, though)

10. Get a hair cut. (Done. And I feel much better with shorter hair)

I did get something done that had been on my previous month's to do list. I bought a bathing suit. And then I wrote about it for BlogHer and even posted a photo of myself.

I'm still reeling from that one.

Around the middle of the month, I realized was feeling very grumpy. I figured out that I was unhappy because, while I wasn't necessarily getting anything done, I also wasn't having any fun. I had to remind myself that, as I'm the one attempting to give my life more structure, I'm also the one who needs to give myself permission to be flexible.

When I drew up my goals for this month, I decided to incorporate time to read, relax and be creative (a bit ironic, I know) and to set aside time to specifically attack this list.


Things to do in May:

1. Spend an average of eight hours writing a week (I'm already behind. Sigh. I have started to edit the first draft of my novel, though, so that's something).

2. Do strength training at least twice every week (Did it once last week, so I'm behind there too).

3. Do an average of five hours of cardio every week (On track. Yay!)

4. Make soup twice (I've already made and eaten a big batch of sweet potato, red lentil and spinach soup).

5. Sort through my clothes (carried over from February, March and April - but I really do want to get this done).

6. Finish making summer plans for my family.

7. Go to at least one bike store and do some test rides (That should be fun. Also, my bike has started to make some pretty scary noises when I pedal or change gears).

8. Spend one afternoon every week doing something fun or relaxing (Last week, I spent part of Mothers' Day finishing Water for Elephants, which I loved reading. This week, I'll spend Thursday afternoon either reading or knitting. I need to make the space in my life to do the things that restore my energy and my creativity).

9. Finish one knitting project (I made a bunch of dish clothes and a dish towel for a friend and gave them to her, so this one's done already).

10. Spend one afternoon per week just dealing with this to-do list (last week it was Wednesday and this week it will be Wednesday, too).

Anyone else out there still working on the monthly list? How's it working for you?

i bought a swimsuit

And I posted about it for BlogHer.

I won't say the search wasn't traumatic:

I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.

You can read the rest of the post here. I even posted a picture of myself, wearing the swimsuit.

I didn't get to far on my to-do list this month but these are accomplishments (the doing and the writing) of which I am proud.

10 things to do in april

This month, I actually wrote up my 10 things and posted them over at BlogHer on April 1st. And then, I let chemo and the long Passover/Easter weekend sidetrack me. I seem to be somewhat lacking in motivation on the blogging front these days. 

I have lots to say but I don't always feel like saying it.

Perhaps blogging should be on my list of May 'to-do's.

For now, though, here is how I did in March (completed in blue, partially done in green and not even started in purple):

 

1. Finish re-reading the draft of my novel (carried over from February). I discovered when I reached the end of the document that I had just stopped writing when I'd written the required 50,000 words. The story has no end. And needs some serious editing. That will be a goal for a future month.

2. Organize my clothes and my closet (carried over from February).

3. Graft the toes on the socks I'm knitting for my sister (carried over from February). It barely took an hour to finish these suckers. Should have done it ages ago. Now my sister will  have some nice wool socks, just in time for summer.

4. Do an average of 5 hours of cardio exercise every week (Revised from February).Really, this should almost be in blue. I fell short by less than an hour, so I'm pretty pleased with myself.

5. Make soup once. Sweet potato, spinach, red lentil. It was a recipe from my nutrionist (see below) and it was yummy.

6. Spend an average of 10 hours writing per week. I permitted myself to write this in green because I did do some writing in March but I didn't even come close to reaching my goal. I blogged 10 times and wrote in my journal with reasonable consistency but that was pretty much it.

7. Make and keep an appointment with a nutritionist to work out a plan to improve my diet, then follow it. I did do this one and have begun to make some changes to my diet. And, although I fell pretty much completely off the wagon over the long weekend, that was in April so it doesn't count.

8. Get my bike back on the road. It's been tuned up and ridden. When the weather is nice, I am going to continue to make my bike my main form of transportation.

9. Mend/wash/block my hand knit scarves. There are five of them. Three are mine and one is an unfinished present. None of them should take very long and it would give me a tremendous sense of accomplishment. Update: After stepping away from this and considering what I have on my plate, if I get two scarves done, I will be happy. I finished one. Now it needs to be delivered to the recipient.

10. Buy a swimsuit that fits (ugh). I tried on a couple of swimsuits but didn't find any that comfortably fit my long torsoed, plus-sized, one breasted body. I initially thought I would carry this one over to April but have changed my mind. This one's traumatic and will be a longer term project.

 

So that makes (more or less) 5 finished tasks, 4 partially completed and one not yet begun.

 

I'm really enjoying this process. I'm getting things done that I might not otherwise. It's gving me a sense of structure and accomplishment. 

 

Here is my list for April:

 

1. Write a first draft of the short story I've been kicking around (I have a writing buddy now, who's going to give me feedback. I have promised to deliver something for her to read by the end of the month).

2. Spend an average of eight hours writing per week (I'm already behind but it's not too late to catch up).

3. Do strength training at least once a week and continue with the five hours of cardio per week (I am on track with the cardio but have done one set of situps exactly once, so I need to get moving on the strength training).

4. Sort through my clothes (carried over from February and March).

5.Make summer plans for my family.

6. Brush my big (shedding) dog once a week and my smaller (non-shedding, tangling) dog every other day (the little dog has been brushed twice, which is probably twice more than she was groomed in March).

7. Update my Ravelry project page.

8. Finish another scarf.

9. Make soup twice (I have a jambalaya stew in the slow cooker right now).

10. Get a hair cut.

It's not too late to play along!

i can tell when it hurts

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

asymmetry at the songbird branch

I have a post up at The Songbird Branch (a blog started by the brilliant Jacqueline) about my attempt to knit an asymmetrical sweater for my asymmetrical body.

Go check it out and the really beautiful items that have been found and made for the post-mastectomy body.

rants and ramblings on a rainy day

Some things make me very, very angry.

Like every new detail coming out about the needless deaths of Robert Dziekanski and Brian Sinclair. Each man could have been saved so many times by so many different people.

Like the fact that the mayor of Ottawa and the leadership of OcTranspo were guilty of several big whoppers around the transit strike (especially about how much money the city was saving and how long it would take the buses to get back on the road).

Some things make me laugh.

Like making silicone breast prosthesis jokes with my sister last night (you really did have to be there).

And going to see a taping of The Debaters with my son and my spouse.

Some things make me smile.

Like getting an email from a woman I have never met who tells me that she loves my blog and seems to be living a parallel life to mine (right down to the kids five years apart and two dogs).

Like the sound of two dogs snoring as I type this.

Some things make me worry about my faculties.

Like the fact that I bought tickets for a show (the above-mentioned Debaters) and then made child care arrangements for the wrong night (thank goodness for my wonderful sister who changed her evening plans so she could still come and hang out with my youngest son).

Like the fact that I woke up one night in a cold sweat in the middle of the night a week ago and double-checked that I had bought the tickets, yet didn't notice that they were for the wrong night.

Some things are good.

Some things are bad.

Some things just are.

Still working, sometimes, on sorting out the difference.

and so it begins

Received September 6:

Hi Laurie,

Would you be interested in guest blogging for us in October? I have some fun ways to make it a great partnership for both of us AND for the fight against breast cancer. If you're interested, let me know and I'll send you the proposal!

Julia Fikse
Creator/President

Ta-tas® Brand www.savethetatas.com
Laughter Heals® www.laughterhealsgifts.com
Save the Ta-tas Foundation www.savethetatas.org

Sent September 8:

Dear Julia,

No thank you. I suspect that you didn't really look at my blog before making this offer. I have metastatic breast cancer - long past the stage where "saving the ta-tas" is an issue.  I may have lost a ta-ta (despite your best efforts) but I am alive, which is what matters.

Also, while I do  have a pretty good sense of  humour, I don't find your products to be amusing (actually, I find those in the men's section to be distasteful and insensitive). I'd prefer to encourage my readers to donate to organizations that really make a difference and use all the funds (as opposed to 5% of sales) for advocacy, awareness, research and building community.

very sincerely,

Laurie

soup and the missing muse

I made three soups in January.

Red lentil and carrot from Cooking with Foods That Fight Cancer

Broccoli cheddar from Looneyspoons: Low-fat food made fun!

Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).

If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the The Eat-Clean Diet Cookbook: Great-Tasting Recipes That Keep You Lean!
A friend gave this one to me. I recall it being time consuming but delicious..

I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.

In fact, I can't seem to bring myself to write much these days.

Maybe, later this week, as I recover from chemo.

Tomorrow is Groundhog Day. And the four year anniversary of my mastectomy.

free to a good home (part 2)

A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:

Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.

Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."

Imstell jumped in with the following:

"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:

FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.

WANTED swimming prosthesis. Any size large enough to hide my belly.

These had me laughing out loud but I think we might actually get something like this going.

Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.

Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.

We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.

i bought a swimsuit

And I posted about it for BlogHer.

I won't say the search wasn't traumatic:

I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.

You can read the rest of the post here. I even posted a picture of myself, wearing the swimsuit.

I didn't get to far on my to-do list this month but these are accomplishments (the doing and the writing) of which I am proud.

has anybody seen my boob?

As anyone who has ever been to my house can attest, the place tends to be a total disaster pretty cluttered. We lose stuff all the time, only to find it months or even years later, after it's already been replaced.

But I have to admit that never in my wildest dreams did I ever think I'd find myself typing this sentence: 

I can't find my prosthetic breast.

We've actually been making some inroads in terms of beating back the clutter. But some rooms are getting worse before they get better. And our bedroom is complete tip.

Now admittedly, I don't wear my prosthesis all that often. But there are days when I want to fly below the radar. There are clothes that just look better when they're symmetrical. And I haven't seen my fake breast for weeks.

Could I have absent-mindedly stuck it in a drawer that I haven't checked?

Could it have become mixed up in the bags of clothing destined for donation?

Could it be under the mounds of clothes yet to be sorted?

Could I have left it somewhere?

It's a mystery.

If you find it, please let me know. 

Or just leave it in my mail box.



Update May 26: We found it! It was in a suitcase. In our bedroom. From a trip on which neither I nor the boob were in attendance. I think I took it off one night and too lazy tired to put it away, popped my bra with the boob still in it, in the open suitcase. Then, the suitcase was closed and left. Three weeks later, when my love finally unpacked - he found my prosthesis. Mystery solved.

my new rack

Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.