it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer. 

15 movies that stick with you

This is a meme that has been doing the rounds on Facebook. I posted it there yesterday but I am too tired and lazy to write anything original today thought it worth sharing with the rest of the world

Rules: Don't take too long to think about it. Fifteen movies you've seen that will always stick with you. First fifteen you can recall in no more than fifteen minutes.

You can participate in the comments or leave a link to your own blog.

1. Gallipoli
2. Fast Times at Ridgemont High
3. An Officer an A Gentleman
4. El Norte
5. The Killing Fields
6. Swimming to Cambodia
7. The Princess Bride
8. Grease
9. Priscilla Queen of the Desert
10. The Breakfast Club
11. Rachel Getting Married
12. History of the World Part 1
13. The Producers (the original version)
14. The Thomas Crowne Affair
15. Mamma Mia

things i've learned in the last 7 days about h1n1 (and other things)

My older son and I were both sick last week and are bouncing back rather nicely. The experience taught me a few things, though:

1- The illness varies in its intensity. We both ended up with fairly mild cases.

2- My doctor is extremely efficient and her office is very well organized. This ended up making a very big difference for us.

3- Tamiflu, if administered within the first 48 hours of the onset of symptoms, can greatly alleviate those symptoms.

4- Oral Tamiflu can make you feel very, very queasy.

5- You don't always get a fever when you have the illness.

6- If you have any of the symptoms, you should assume you have the illness.

7- You will not get tested for H1N1 unless you land in the hospital.

8- Even if you think you've had swine flu, you should still get the vaccine, unless it was confirmed with a test.

9- The hysteria around this is getting to be a little overwhelming. Remember: Most folks who get H1N1 do not get seriously ill.

10- If you are having trouble breathing, you should go your hospital's emergency room.

11- If you have been running a fever for more than 48 hours, you should see your doctor.

12- Judging by the line-ups in Ottawa, there are a lot of people who live here who fall into high risk groups.

13- My six year old knows how to come through in the crunch. He stood in line for 5 and a half hours. He was patient and good humoured the whole time (my spouse was with him). And then he got a needle at the end. The only thing he asked (at regular intervals) was if he could go to St. Hubert when they were done.

Even though it was well past his bed time, T. took him there when they were finished (I forgot to ask him if he had beer with his chicken). And since St-Hubert now has nut free desserts, he topped off the meal with a brownie and ice cream.

And then we bought him a new game for his DS.

14- If you leave me a link saying that the vaccine is poisonous or that I am a dupe of the pharmaceutical industry, I will not be impressed. Chemotherapy is poison, too and it has saved my life. There really is such a thing as a "necessary evil."

I won't add my rant about how this pandemic is being mis-managed by all levels of government because I wouldn't be able to stop.

I will share Rick Mercer's rant with you, though.

some good news for a change

Something good was announced last week and I nearly missed it.

A news release from the Canadian Breast Cancer Network landed in my inbox last Wednesday. It contained the fantastic news that Kadcyla (formerly known as TDM-1) has been approved "on a time limited basis" for "HER-2 positive, metastatic breast cancer patients who have initiated or completed at least two lines of HER-2 targeted therapy and who have not received Kadcyla in previous lines of therapy."

This is very positive news. As I wrote in back in June, the drug was initially only approved for women in their "second line" of treatment which would exclude me. This despite the fact the many women in later phases of treatment have responded enormously well to the drug (each stage of chemotherapy/targeted therapy treatment is a "line." If one line fails or stops working, a patient is moved on to the next. I have been in my second line of treatment since being diagnosed with metastasis in November 2007.)

In other words, this announcement means that I, a woman with Her2+ metastatic breast cancer, will potentially be eligible for Kadcyla when if Herceptin fails.

This has been a rough week in Canada. The events of last Wednesday completely eclipsed this news, even for those of us who care deeply. I live in Ottawa. My kids' schools and my husbands office were locked down all day. My brother-in-law works at the House of Commons and was very close to where bullets were fired. I spent the day glued to my computer screen, watching the news and refreshing Twitter. Despite a host of rumours, it was a great relief to learn at the end of the day that there had only been one gunman but for much of the day, we just didn't know. It was harrowing. And such a tragedy.

I decided to wait for the dust to settle to post this little bit of news but then another big, sad story erupted on the weekend and I once again found myself glued to social media. Last night, there were some I follow posting pictures of kittens and puppies on Twitter, just to have something more positive to in their news streams. 

My contribution to adding #somethingnice to my Twitter stream. A dog in  Hallowe'en costume!

So while the dust hasn't settled, I wanted to share my own little bit of something positive. I'm just left wondering what "for a limited time" means. Will the province then withdraw coverage? Or is this like a trial to see if it makes sense to continue?

The Canadian Breast Cancer Network calls this "a step in the right direction." Let's hope the province takes more and more permanent steps soon. Let's keep the good news coming.

how cool is this?

Yesterday morning, I got a call from Oresta. She told me that she had read my article in the Centretown Buzz and wanted to reach out to me.

Even though I love her store and spa (I asked for gift certificates for Christmas last year), I was not on her mailing list and had not received the letter that I posted above.

It's hard to read, so here is the text, in full:

OCTOBER is BREAST CANCER AWARENESS MONTH

Pinkwasher: (pink’-wah-sher) noun. A company that pur-
ports to care about breast cancer by promoting a pink
ribboned product, but manufactures products that are
linked to the disease.

Dear clients,

ORESTA organic skin care confectionery is committed to providing organic spa
treatments and to supporting companies that manufacture truly pure and organic
products. We believe in beauty without compromising your health.

We have been touched by cancer in our families and with our clientele - as
cancer survivors and undergoing cancer therapy. The prevailing comment of clients
who have come in for a spa treatment while undergoing therapy was how nurturing a
visit to ORESTA organic skin care confectionery was for them.

We have wanted to help the cause but have struggled with a way to do this.
Do we donate a % of sales? a % of services? Do we fundraise? For which organiza-
tion or foundation? In the end, what feels right for us, is doing what we do best:
pampering.

If you, a friend or loved one is undergoing cancer therapy and would enjoy an
organic facial treatment, please contact us. We are committed to treating one
woman per week to a complimentary ORESTA treatment.

Oresta was calling to offer me a facial (I am going on Friday) but I offered to blog about this offer. She asked me to clarify that she and her staff will be offering this service to women undergoing treatment throughout the year - not just during October.

I am impressed and touched beyong words. Have any of you ever heard of anyone else doing this?

I told my spouse that, by coincidence, I had written in journal that morning that I would really like a facial. He said, "Tomorrow, could you write that you would really like a home renovation?"

chronically whiny

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

random. out of necessity

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

frequent flyer

I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).

It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately).

I was surprised, then, when my name was called a few minutes later. I passed the same nurse again, on the way in, and said, "That wasn't an hour."

"We squeezed you onto another team," she replied.

My friend, C. said, "Are you queue jumping?"

I smiled back. "It's the life-time membership."

bone loss: a public service announcement

I have been reading Cancer Fitness by Anna L. Scharwtz. I'm only a few chapters in, but the book has already taught me some important things.

I don't tend to devote a lot of thought to preventing bone loss but I did know that regular weight-bearing exercise helps prevent bone loss and to build strong bones. And while I walk and run (just finished the Running Room's beginner program again), I really don't do any strength training (or core work, for that matter, despite repeated promises to myself).

The women in my family tend to have strong bones (and good bone density) but what I didn't realize was how many factors put me at risk:

• early menopause, as a result of chemotherapy.


• doxorubicin (Adriamycin, the infamous "red devil). I had 6 rounds (this is also the drug that temporarily damaged my heart).


• decadron and other steroids (I had higher doses with the first 6 rounds of chemo but I still get decadron through IV with every chemo treatment, to help mitigate side effects).


• lorazepam (Ativan, which I use only occasionally for insomnia. I had absolutely no idea that it caused bone loss)


• regular consumption of caffeine.

And I don't drink very much milk, either.

Remember, that promise to myself I made in January? Well, I have not made as much progress as I would like. So, I signed up for a fitness class at my local community centre that incorporates core work and strength training (since the free weights, stability ball and exercise bands don't seem to be doing much more than collecting dust) to get myself started. Now, I have another reason to get to it.

I also took a calcium supplement today for the first time in months. Those suckers are horse pills but I think I need to get back into the habit of choking them down.

What are you doing to prevent bone loss?

A day at the hospital

Over the past two days I have spent several hours at the hospital (not for me). Sometimes I drive other people there.

It was a bit of visiting cancerland on Wednesday as I was in the infusion area. One of the nurses asked me if it was weird to be back there and brought flashbacks. I said not really as its been long enough. And that is true. I am okay with it and it doesn't bring huge flashbacks. As long as I am not the one in the big chair with the IV in my arm.

Yesterday I was getting us tea in the cafeteria, there was a woman in front of me in line wearing a pink and white striped shirt, with a pink baseball hat over her bald head. She was clearly ready for Pinktober. And comfortable showing the world her ailment.

While waiting in the radiology department, we all got a snicker as a man walked out of the dressing room and brought his shirt and shoes to his wife. I could understand the shirt but not the shoes. Why walk in stocking feet in the hospital? Icky.

Later, in the lobby there was a woman in dressed in a hospital gown at the ATM machine with her IV pole. She was clearly a patient who went out for a walk to get some cash so she could go shopping at the gift shop. (Mental note to self, bring debit card for shopping at next inpatient stay.)

I made some small joke about taking an IV pole out for a daily walk as she went by. She replied with "they don't talk back and you can take them anywhere". Very true.

Enough hospitals for this week. I think all my appointments start next week. Crap.

i get personal with the Run for the Cure

This is the text from my page at Run for the Cure site;

Thanks for visiting my personal page.

I was diagnosed with very agressive breast cancer in January 2006. In November of that year, I learned that it had spread to my liver.

My oncologist told me that the were "more tumours than they could count" and when I asked how long I could expect to live, he reluctantly answered, "Years. Not decades."

Fast forward to June 2007, when after several rocky months of treatments, I started feeling much better. Then, on June 30th 2007, a scan confirmed what my body had been telling me - there was no longer any sign of cancer in my body!

I have been in remission for three years. I'll remain in treatment (chemotherapy and Herceptin every four weeks) for the forseeable future, though. There are so few women in my postion that no one can reliably say what will happen if I stop. But I've noticed that my family and are planning ahead and casually making reference to events that will take place years in the future and assuming that I will be there.

I am running on October 3rd so that more women will be granted a future they thought had been stolen from them.

I'm running in the hope that some day soon women like me can walk away from treatment with confidence that the cancer is behind them.

I'm running so that my nieces and other young girls need never worry about breast cancer at all.

Can you support me (please)?

I have added a permanent link to the blog (top right hand side) that you can click on any time, if you want to make a donation.

(Our team, No Pink for Profit, now has seventeen eighteen members. Three Four other women have committed to join us. There is still room for more though - you can run or walk at your own pace. You can pay the entry fee or decide to fundraise. It's completely up to you. All women are welcome).

Did chemotherapy change your body?

A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?

I am talking about food and medications to be specific.

Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.

More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:

• prednisone - also used to treat RA flare ups as well as allergic reactions
• plaquenil - an old school RA drug
• voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
• adhesives - as used on pain patches

I was given both prednisone and plaquenil at the same time when first treated for RA. I reacted to both. At the same time. How (not) fun.

And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.

If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.

I am petrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records. 

But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told  us before chemo that we could expect these changes.

watch me on tee vee!

Or catch it online.

I'm being featured in a story on cancer blogging on CBC News Network (formerly Newsworld). Tune in this evening, between 8:00 - 9:00 p.m. ET

You can also watch online at cbc.ca/connect (I'll post a direct link to the video once the show has aired).

I promise to blog more about the whole experience (I was interviewed at home with my family and in the chemo room) but I wanted to give all a chance to check it out..

If you watch the show, let me know what you think.

winners!

The random number generator has spoken and Shari and Jo will get copies of "Getting Past the Fear. A Guide to Help you Mentally Prepare for Chemotherapy." I just need your contact info! You can send me an email by clicking on the photo of my book (Not Done Yet) in the right sidebar. Congratulations!

book review: Getting Past the Fear. A Guide to Help You Mentally Prepare for Chemotherapy

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:

"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."

If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

down and up and some parentheses

Well, hello there.

It's been quite the week.

On June, 10th, I woke up with a sore throat. I didn't take my temperature until early afternoon, by which time it became clear that I was running a fever. I called the nurse who works with my oncologist (I'm supposed to do this, since I have a suppressed immune system, thanks to chemotherapy) and was directed to go to the emergency room at the hospital connected to the cancer centre.

I really, really balked at going but within three hours I was home with a prescription for penicillin (I think chemo recipients get fast-tracked through emergency these days). I was moved pretty quickly to my own treatment room (the most traumatic moments came when I was asked if I minded if a less-experienced nurse accessed my portacath. Within minutes, there were five nurses in the tiny room, in addition to my spouse and I. There was lots of fumbling and it took a couple of tries but eventually they got things working). After examining me, the doctor concluded that I was "a very sick person."

What was foremost on my mind, as I lay waiting for the doctor (in addition to the observation that having strep throat or the flu is nowhere nearly as scary as cancer), was that the Toronto launch for my book was supposed to happen the next day.

I spoke to my publisher but decided not to make any decisions that night, in case I felt better the next day (that was a mix of denial and delirium). My GP called the next morning to check in on me and said, explicitly what I needed to hear, "You are sick. Don't travel." (No kidding)

The publisher decided that morning that they would proceed without me. I was disappointed but understood completely. I sent out a few messages to that effect and went back to bed. When I awoke, I found out that the event had been postponed. I was pleased and sent out another round of emails, tweets and Facebook updates. I am sorry if I confused any of you with these messages (and even sorrier if you showed up for the event to find out it was cancelled).

Everyone at Women's Press was really, really kind to me and very sympathetic about all the scrambling they had to do at the last minute. I will post an update when we re-schedule the launch.

In other news, we had a sleepover involving eight 11 year old boys on Saturday night. My house will never be the same. What made us do this (other than love for our son)? More denial. It appears I am still very good at it.

I also took two extremely excited 6 year olds on the O-Train to the movie theatre. We saw Up. I loved it. And the little dervishes settled down and were mesmerized for the duration. It was the quietest part of my week end.

justifiably annoyed or overly sensitive? you tell me.

I read an article a little while ago about a Conservative politician who just finished treatment for breast cancer. The article was probably meant to make me feel inspired but instead I just go angry.

I felt guilty for not being more charitable (is that a word used in this sense by anyone other than those raised Catholic?) and disappointed in my own lack of empathy.

I bookmarked the story and decided to postpone writing about it until I could understand my reaction.

It's been a couple of weeks. I reread the article and got angry all over again.

I work very hard at not being judgmental of others' choices. This is a hard thing when you hold strong opinions but I do try my very best to underline that I've made what I consider to be the best choices for me. So why am I so annoyed at the choices of someone else?

Paula Peroni (the Conservative politician from Sudbury) is to be commended for her strength. Her approach to diagnosis and treatment seems to be very different from my own. She wore a wig, never stopped working, and told no one until after she had finished treatment. She seems most concerned that someone will think less of her for having had cancer. Perhaps that comes with being in politics.

While Peroni seems to stress that these were the right choices for her, the writer of the article seems to frame them as a goal to which we all should aspire. And Peroni herself seems to frame the path she chose as being the most virtuous:

"When you tell people you have cancer, "you put a responsibility on them they didn't ask for," said the longtime trustee with the Sudbury Catholic District School Board.

They care about you and worry about you, so you don't want to add to their burden.
'It's nice to tell people (about it) when I'm on this side of it so they don't have to do the guilt and the worry or the condolences or whatever it is they feel is necessary,' said Peroni."

We all have a right to privacy but someone who chooses to stay private is not morally superior or more altruistic than those of us who make our struggles more public. I don't think it's just a "burden" to share our stories. In my experience, people genuinely want to help and I think that helping each other makes us stronger individually and together.

There are many kinds and cancers and as many kinds of treatment. Some people get sicker than others from the illness and its treatment. Some need more help from outside the immediate family, for a whole host of reasons. There is no shame in this.

And finally, perhaps it's my own metastatic status that colours my response. We are immersed in a culture of pink and a belief that you've just go keep a smile on your face, go through it and move on - and if you can do it without missing a step, you are to be applauded. Those of us with mets very often feel invisible.

Is this all just my own baggage speaking? Go read the article. Come back and tell me what you think. I'd love to know.

Possibly gratuitous and definitely snarky addendum: 

"Peroni believes she is where she is supposed to be and if there was ever a time for Sudbury 
to go Tory blue, it is now." Does this "work that needs to be done" involve deep cuts to the health care system from which she has so profoundly benefited?

not as simple as it would seem

As someone living with metastatic breast cancer, I pay keen attention to the development of new cancer drugs. And of course I pay particular attention to the drugs that are likely to one day benefit me.

I have been on Herceptin for 7.5 years. My response was rapid and complete and there is no sign that the drug has stopped working. That doesn't mean, however, that I don't worry about the future and how I will proceed once I come to the end of the line with this miracle drug.

Enter trastuzumab emtansine, or TDM-1, as it was more commonly known. Over the last couple of years, I watched with great interest as clinical trials occurred all over North America. I have been personally in touch with several women who had as thorough a response to TDM-1 as I did to Herceptin. It was very exciting.

Then the trials ended and we had to wait for Health Canada to grant their approval. When that hurdle was cleared, I breathed a sigh of relief. Unfortunately, the sigh was a little premature.

The time between Health Canada approval and provincial funding can be long and complicated. Once Health Canada grants its approval, a body called the Pan Oncology Drug Review (pCODR) assesses the drug, a process that can take up to 149 days. After pCODR makes a recommendation, each province decides if it will fund it. And while this is happening, Ontario, unlike some other provinces "...does not have a mechanism in place that would grant cancer patients access on compassionate grounds to a drug that has been approved by Health Canada."

I heard last week from the Canadian Breast Cancer Network that TDM-1, now known as Kadcyla, has been approved for funding "for the treatment of patients with HER2-positive, unresectable locally advanced or metastatic breast cancer who have received prior treatment with trastuzumab (Herceptin)and taxane". Phew.

[Update: I learned from Delaney (see the comments and the Toronto Star interview) that OHIP funding will only be granted for "second line treatment." Should I need Kadcyla, it will be for third line treatment, as I will already have done my first 6 rounds of TAC (first line) and then the vinorelbine and Herceptin combo (second line). I'm only on Herceptin now but the treatment that follows will be third line. That means I'll only get Kadcyla if my private insurance will cover it. This despite the fact that I have known women who've had Kadcyla as a third line treatment, with great success.]

CBCN is urging voters to contact "local candidates and ask them their stance on improving access to breast cancer treatments." Improving access to cancer drugs is also a goal of FairCancerCare.ca. If you haven't already signed our petition, please do so today. You can also ask your local candidates to sign our pledge to advocate for fair cancer care in Ontario. This is super easy to do and takes almost no time at all via the website.

Meanwhile, I've also heard from CBCN that a drug that crosses the brain-blood barrier is in a phase 2 clinical trial. Will this drug be as effective as it promises to be? Will it be available by the time I need it? 

I'm holding my breath a little.

snarky brilliance credit: Andrea Ross

wishing you continued good health

As, I mentioned in my last post,  I've been working on a campaign called Fair Cancer Care. We're hoping to create awareness, followed by change to how chemotherapy drugs are covered in Ontario. We launched in time for the provincial election campaign, in the hopes that we can get our local candidates to take an interest. You can find out more at FairCancerCare.ca.

The people behind the campaign are a group of Ottawa residents who have all been affected by cancer. We've all been promoting the hell out of this campaign as the election date draws nearer. My good friend Andrea is a driving force in our group. Her creativity has been key to getting us moving and, as someone who lived through breast cancer, she gets how crucial it is to ensure that everyone gets the best care available.

Yesterday, Andrea had the following exchange via email with someone she knows slightly, who'd been asked to sign our petition. I share the following exchange with Andrea's permission. For the purposes of clarity and my own amusement, we'll call the other person Ms. Smug Hubris.

SH: "I don't believe that cancer causing radiation and toxic chemotherapy is the cure for cancer. Healthy whole food and a healthy lifestyle is."

Andrea: "I thought the exact same thing before I got it. Wishing you continued good health."

Although my response was much cruder (rhymes with "Oh duck off"), I think Andrea was perfect. While Ms. SH is entitled to her opinion, I'll continue to fight for the very best cancer care to be available to everyone. 

Because the thing is, anyone can get cancer. I've known several extremely healthy living, eating and drinking people who've been hit by a cancer diagnosis. I know people who did everything right before and after that diagnosis and died anyway.

We need a cure for cancer. But until then, we need the very best chemotherapies to be available as soon as they are approved. And everyone should have access to the treatment their oncologist prescribes, regardless of ability to pay.

Ms. Smug Hubris can chose whether or not to seek treatment, should she be unlucky enough to get cancer. We'll keep working to make sure it's available.

To learn more and sign our petition, please visit FairCancerCare.ca. You can like us on Facebook, too.

introducing: #FairCancerCare

In Canada, we tend to think that, should be unlucky enough to get cancer, our health care system will cover the cost. For thousands of Canadians, this is not the case.

Ontario is heading into a provincial election. Will you sign our petition to ensure everyone has access to the best care their oncologist prescribes for them? Will you ask the candidates for support when they call you or come to your door?

To find out more, please go to FairCancerCare.ca. You can sign our petition or find out some of numbers beside these facts.

Please take two minutes out of your day and check out our campaign. The next person to find themselves without coverage could be you. Or someone you love.