"none of us knows when we are going to die"

On April 25th, Alaina Giordano lost custody of her children. A North Carolina judge ruled that her two kids need to move to Chicago to live with Giordano's ex-husband. She based this decision, in large part, on the fact that Giordano has Stage 4 breast cancer.

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I can't be articulate about this story, except to say that I work very hard to make sure that my kids will be all right- no matter what happens. I wish I could protect them and all those who love me from the realities of cancer. But do I think that cancer makes me a less fit parent?

Not on your life.

Want to read more?

I first read about this on BlogHer, where Jenna argued very articulately that anyone who has ever been ill or ever might be should care about this story and the frightening precedent it has set.

My friend Judy (from Mothers With Cancer) wrote a beautiful response called "We Are All Terminal." 

You can read Alaina's own words on her blog, Beauty in Truth.

I couldn't find a single post or comment by anyone who agreed with the judge's ruling.

For that, I'm grateful.

not really the end

Did you know that the world is going to end on May 21st, 2011? I saw a guy on a street corner today with a sign that said just that. And then I saw a big-ass caravan with the same message.

Contemplation of our impending collective doom helps to put yesterday's election into perspective. It doesn't matter if the Conservatives were gifted with a whopping majority if none of us is going to live long enough to deal with the consequences. There must be more of these end of the world types than I previously suspected. That would help me understand how it is that so many of us thought endorsing the Conservatives would be a good idea.

Or something. You'll have to forgive me, it's been a hell of a day. I stayed up way too late watching the election results and then stumbled around like a zombie all day. I'm delirious.

I even went across town to an appointment, only to discover that it's on Thursday.

It was a very odd feeling last night to watch the NDP take over 100 seats (the previous high having been 43) and not feel elated. Proud, yes but not elated. I just kept watching the Conservative and NDP numbers rise at the same time and feeling like my head was going to explode.

Those of us who oppose pettiness, meanness and bigotry and who support human rights and democracy (not to put too fine a point on things) have four years to get our act together. 

And I think we need to really start screeching about proportional representation.

Meanwhile, I really am thrilled that my party is going to be the Official Opposition. There is hope for the good guys (thanks, good guys, for working so hard to get yourselves and like-minded folk elected). I'm thankful to all the volunteers, staff and veteran politicians and candidates who worked so hard to make this happen.

And, even if I am slightly hysterical, I'm choosing to repeat the words of one of the surprised, young, brand new MPs from Quebec, "It's going to be all right."

optimism tested

As we were listening to yet another story on the news this morning about how the Tories and the RCMP have barred people from attending campaign events (for things like having a photo of Ignatieff on their Facebook page or having been involved in an youth environmental organization), my spouse announced "It's going to work."

I was only half way into my first coffee, so I made him repeat himself. "None of this is going to matter," he said. "It's a story for now but it won't affect the election. The Conservatives will get a majority and then, next time, the other parties will have learned that hateful advertising and ignoring the truth are the best strategies to get ahead." (Forgive me, Tim, I'm paraphrasing. That's the gist of what he said)

I fear that he's right. Even the revelations about former aid Bruce Carson have barely affected the campaign.

Perhaps politicians have always said one thing and done another. These days, though, they barely have to pretend otherwise. And some, like Rob Ford in Toronto don't pretend at all. He's thoroughly corrupt, rude and uninformed. And people love it.

And then I learned that Bradley Manning, the 22-year-old U.S. Army Private accused of leaking classified documents to WikiLeaks has been subjected to torture in prison (Avaaz.org has a petition, if you want to add your name), despite the fact that he has never been convicted of any crime (not that conviction would justify torture).

So the message, boys and girls, is as follows. Telling the truth could lead to severe punishment but stealing and lying can only get you ahead.

It's enough to make any thoughtful person feel like ranting. Although I could never do it as well as Keith Olbermann.

Or Rick Mercer.

And please, if, like me, your sickened by corruption and lies and if you believe that a democratic government is a transparent one, please get yourself to the polls on May 2.

giving in to the monkey brain

Herceptin

I think I'm happy with the outcome of the brouhaha over Herceptin in Ontario. For those of you outside the province or outside the loop. Jill Anzarut, a 35 year old woman undergoing treatment for breast cancer made the news last week when she announced that the province had to pay for Herceptin because her Her2+ tumour was less than one centimetre (that's about 1/4 inch) in diameter.

The province initially refused to budge but eventually caved after a massive campaign played out in the social and traditional media. Access to Herceptin will now much more room for discretion when it comes to providing access to the drug.

I feel good about this. It's not that I think that every drug should be funded for every person. Her2+ cancers are very aggressive and, as best put by Stephen Chia, chair of the British Columbia breast-tumour group, “In HER-2 positive cancers, it’s not the size that drives it; it’s the HER-2 gene that drives it.” 

Election

Canadians are once again going to the polls. I am not happy about this. 

I'm sad that the long overdue Bill C-389 protecting the rights of transgendered people will die before it gets the chance to be thrown out by the Senate.

I'm worried that we will end up with a Conservative majority.

I have election fatigue. There was a time in my life when an election would make me feel excited and hopeful. Now I just think, "Ugh."

Presents in the mail

Did you see my scrabble pendant in yesterday's post? My friend Leslie sent it to me after I told her I'd like to have on with my initial on it. It made me very happy to open the envelope that held my surprise.

The bad with the good

Last week, I received my author's copy of the current issue of Canadian Woman Studies. The theme this quarter is Women and Cancer and I have a poem that is part of a piece called "Seven Reflections on Breast Cancer by Seven Women Who Worked Together." I'm happy about that.

I'm far less happy about another piece I stumbled on when I was leafing through the issue. It's called "The Private/Public Split in Breast Cancer Memoirs." It was written by a woman who came to my book launch in Toronto and asked for permission to speak in order to seek contributions - something to which I readily agreed. She also asked me to contribute to the issue, which prompted me to reach out to my writing group.

I had no idea that she planned to write a scathing deconstruction of my book - but that's what she did. I know that all writers get bad reviews but I found her comments to be very critical of me as a person (I guess you can't seperate the analysis of a memoir from its author) and quite unfair. 

I'm sure how to respond or react, or whether I should do so at all. I've actually been unable to finish reading the article. With a distinct lack of maturity, I threw the journal onto the living room floor and it stayed there for several days. I only just picked it up, in order to write this post.

I'll let you know what I decide to do. Meanwhile, I'm pasting my very own contribution below. It's a very small part of a greater whole (and not the strongest piece by the seven of us by any stretch) but it's mine and, like all my writing, expresses a little bit of what has been in my heart.

Snap shots

December 2^nd, 2005.

When I close my eyes, I see myself as I was then.

Short dark hair and boots with heels.

Irritable and excited in equal measure.

I knew big change was coming. And it did. But it was not what I expected.

I was getting undressed when I found the lump.

July 1^st, 2006

I close my eyes and see myself as I was then.

Round, bald and bloated. But happy.

Chemo is behind me. Or so I expect.

I am self-conscious but also hungry.

I eat two burgers at the barbecue.

December 24^th, 2006

I close my eyes and see myself as I was.

I rallied for Christmas Eve but in the end the pain got the best of me.

My liver was riddled with tumours. And I had waited too long for the morphine.

My mother had to put me to bed. That comforted me.

And so did the drugs.

June 25^th, 2007

I close my eyes and I can taste

The strawberries on my tongue

The sensual pleasure of the whipped cream

And the Niagara ice wine as it slid down my throat.

I knew I would soon have something to celebrate.

December 16^th, 2009

I close my eyes so I can think.

I have now been in remission for 30 months.

And I will be in treatment for the rest of my life.

Some days I wake up celebrating.

Some days I grieve for what I have lost.

Today is a sad day.

Tomorrow will be better. Or maybe the day after that.

now this could be fun

I've written before about the one major limitation of Herceptin - that it doesn't cross the brain-blood barrier. A couple of years ago (after meeting several young women with metastasis that had spread to the brain), I underwent a brain MRI. To my very great relief, there was no evidence of trouble but I think I'll will be requesting another before too long.

A few days ago, my friend Deanna posted a link to Breast Cancer? But Doctor...I Hate Pink and to Ann's take on the news that Viagra may help Herceptin to (ahem) penetrate the blood-brain barrier and thus help reduce the size of brain tumours.

 As Anne tells it:

"Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can't get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties."

It's seriously interesting news but go read Ann's full post. It will make you laugh.
 
Cross-posted to Mothers With Cancer.

scoped

I once had a colleague who was a former Fleet Street journalist. I can't remember his name but I do remember a story he told over a particularly boozy dinner.

"The worst kinds of press releases," he said, "keep all the best bits for the end. That's just not how it should be done. It's like reading a news story that says 'A crowd gathered at Buckingham Palace today. There were also fire engines and ambulances. The corgies were brought out to safety. The Palace burned to the ground. The Queen is dead."

As I went on to work in communications, I kept that anecdote in mind and tried to make sure that the most important facts were kept in the lead of my news releases.

But this is not a news release and I can tell my story in way that pleases me.

I had an endoscopy yesterday.

I wasn't terribly worried when the secretary at reception couldn't find any record of me. I credit the Ativan for that. You still feel the anxiety but it's further away. Almost like it's someone else's anxiety.

She must have found me in the end, because I was called into the endoscopy unit, given an id bracelet and told to change into a robe.

The endoscopy unit at the Civic Hospital could use a facelift. The paint was peeling off the walls in the waiting room and the beds in the prep and recovery area are separated by curtains. My neighbour and I learned a lot about each others' medical histories and bowel movements.

Every nurse I spoke to was very taken aback that I should have metastatic breast cancer at my age.

Every one of the nurses was really kind.

The nurse who took my history and prepped me for the anesthetic noted my "crappy veins" but she got the vein accessed in one poke, so major kudos to her.

My bed was eventually wheeled into the room where the procedure would be done. At this point, I met Dr. A. for the first time. There was another doctor with him who introduced himself so quickly that I didn't catch his name. This second doctor, who I assume was a resident (why don't they introduce themselves as such? Residents always say, "I work with Dr. So and So." They never say "I am learning from Dr. So and So. Do they think the patients can't be trusted with this information? This really bugs me because I can always tell they are residents and I would be much more forgiving if they were honest with me) began to very rapidly list off all the horrendous risks of the procedure and then handed me a waver to sign. 

It's a good thing that I had done tons of my own research (and that I had taken the Ativan) because I might have demanded that they wheel me out of there.

Dr. A. asked me if I had signed the waiver and if I had any questions. I said, "I just want to get this over with."

I mentioned my strong gag reflex to Dr. Resident. He instructed the nurse (pompously? Am I being biased?) to give me some extra shots of the anesthetic spray for my throat (I had the distinct impression that the nurse was going to do this anyway but perhaps I am biased). Then they hooked me up to the drip, placed a plastic frame with a hole in it in my mouth and shoved a tube down my throat.

I then proceeded to gag, choke and gasp for breath. Tears streamed down my face. 

I'll never forget the nurse who gently held my head and spoke comfortingly to me.

It's amazing how big the endoscopy tube looked to me. There's no way it could have  been that big in real life.

I heard Dr. A. say something about how studies had shown that the gag reflex was greatly diminished when Fentanyl is administered.

I heard Dr. Resident sound surprised.

A nurse administered Fentanyl via my IV. And then I was really, really stoned (I just read that Fentanyl is 100 times more potent than morphine and I had a cocktail with other sedatives).

Not sure if I passed out or not but I was pretty woozy. I know they called T. to come and get me. And I know that one of the nurses suggested I try and get dressed.

I sat up and nearly puked. The nurse got me to lie back down again.

Lather, rinse and repeat a few times.

One of the nurses gave me some apple juice, which helped.

I asked what drugs I had been given. A nurse looked that up and said with surprise that I had been given a drug in the Valium family and Fentanyl. She said, "No wonder you're so wasted."

I heard someone mention Gravol (known as Dramamine in the US). I now understand why they give it to me each time they give me Demerol at the cancer centre. They gave me a barf bag.

I texted T. to see why he still hadn't arrived. He texted back that he was in the waiting room. I told him to come get me. He said that the secretary wouldn't let him past the waiting room.

If he wasn't allowed past the waiting room and I wasn't allowed to leave without him (nor could I walk on my own), we were kind of stuck.

One of the nurses went to get him.

Before I left, Dr. A. came to talk to me. He said that I am to come to his office in around four weeks, at which time I will get my results. He also told me that there were no visible tumours (see what I mean about burying the good stuff under a whole pile of details?).

I went home and slept for 6 and a half hours. It would have been longer if T. hadn't come into the room to check on me. I was pretty dopey all evening (giving all my online Scrabble opponents an unfair advantage) and hit the hay before 10.

My throat hurts today and I'm still kind of tired but I did get out for a run (it's 10C here today that's 50F), so I guess I'm recovering pretty well.

In a months time, I'll find out if the biopsies revealed any pre-cancerous cells. Or if I have celiac disease. And Dr. A. promised that if they don't find anyting, he's going to want to do a colonoscopy.

What fun.

this is kind of nice

TopOnlineColleges.com as included Not Just About Cancer in their list of "15 Inspiring Breast Cancer Blogs."

Get inspired by this breast cancer survivor, who turned her unfortunate situation into a book about defying the odds and beating cancer.

Pretty cool, no? It's nice to know that someone's reading and finding resonance in my words. As for the "beating cancer" part - I know it lurks there somewhere and that we who have gone to Stage 4 are never, ever out of the woods but I do like to think I'm beating it.

letter of the day

Yesterday, CBC Radio's Q featured an interview with Samantha King, author of Pink Ribbons Inc.

At the end of the interview, listeners asked the following questions (they were also posted to the Q blog): What are your impressions of cancer fundraising and awareness efforts? Are they working? Do you find any aspect of them troubling?

My sister-in-law, B. alerted me to the interview (she listens on the east coast schedule) and encouraged me to write a letter in response. This morning, a slightly edited version of this letter was read on the air (I was the "Letter of the Day"):

In January 2006, when I was 38 years old an the mother of two young children, I was diagnosed with very aggressive breast cancer. I underwent a brutal treatment regimen only to learn in November of that same year that the cancer had spread to my liver. I was told that I had “years, not decades” to live.

I resumed treatment and, this time, my response was immediate and dramatic – by June 2007, there was no longer any sign of cancer in my body. As I write this, I am still in remission. I'm also still in treatment, as we don't know enough about what happens when metastatic breast cancer disappears to make an informed decision about stopping.

I know without a doubt that I am alive today because of the kind of cutting edge research funded by breast cancer organizations. I also know that thousands of women who've been through breast cancer live better lives because of the kind of advocacy and outreach work that is undertaken by non-profit organizations.

But I do cringe, seethe and yes, even rant every time October comes around and we are deluged with pink products from fried chicken to face cream to key chains.

In theory, I'm not opposed to corporate sponsorship. But in the same way that I think cigarette companies should not be permitted to sponsor children's festivals, I'm offended when companies that sell products that are unhealthy, bad for the environment and laden with carcinogens jump on the “pinxploitation” bandwagon. At best, these campaigns do little to eradicate breast cancer and worst, they are a cynical attempt to grab some good PR and increase profit margins at the expense of anyone who's life has been affected by cancer.

Don't get me wrong. I don't judge anyone who's drawn to all the pink stuff. I own a lovely pink cowboy hat. I would just ask folks to think before they get swept up in the “Pinktober” frenzy. Put that pink soup back on the shelf. Step away from the pink sweater with the pink ribbon buttons (for so many reasons). Unless you really want the pink sunglasses, save your money. Most companies only give a tiny percentage of sales to breast cancer research. Why not make a donation instead to an organization that is demonstrably contributing to research, advocacy and especially prevention of all cancers? Then you'll know that you really are making a difference.

All the letters that the host, Jian Ghomeshi, read were on this subject and all of them opposed pinkwashing. Perhaps tomorrow will bring a deluge of letters taking an opposing opinion but it's good to see that more of us are speaking out on this issue that has driven me wild since my own diagnosis of breast cancer.

Cross-posted to Mothers With Cancer.

women who care

A wonderful book was published this week. Women Who Care features stories of women's health care experiences - as providers and as patients. The book was the brain-child of Dr. Nili Kaplan Myrth:

In her third year of medical training - discouraged by how little focus there was on caring - a young woman was faced with a decision: she could throw her hands up and quit or she could risk speaking up and work toward change. She decided to send out a call asking women to share their experiences with health care and caring. Her e-mail inbox immediately overflowed with stories from women across Canada Together, this amazing group of women wrote Women Who Care.

The book was published by Pottersfield Press. I'm proud to say that an essay I've written has been included. It's called "Patient Personified" and it's about how the politics of health care have become intensely personal since I was diagnosed with breast cancer.

You can order the book through the publisher or your local bookseller (Octopus Books is carrying it in Ottawa). The books author's will be donating any royalties to the Women's College Hospital Foundation.

thank goodness someone's brain is working

I've been staying  up way too late and drinking too much coffee to compensate. Then I have trouble sleeping. It's a bit of a vicious circle.

As a result, I seem to be having problems jump-starting my brain.

The items in this post have no real connection, except that I found them on the internet and they were all drawn to my attention by local bloggers.

Zoom wrote about this lost cat. Is she yours? If her owners aren't found, do you have room in your home for this sweet girl? She's been taken in (and cared for) by the Crazy Cat Lady but she needs a forever home.

Nat got my blood boiling with this righteous rant (on why she won't "shut the fuck up") and made me laugh with this piece on Ottawa's ant plague (I feel so much better knowing thaat I'm not alone) and cry with her link to this amazing story about how a city helped a boy with cancer become a superhero for a day.

I don't know what I'd do without my virtual friends.

really random news

1. According to an article in the Globe andMail, women and men respond very differently when they are on the recieving end of an apology:

“Women who are starved of an apology for rude or hurtful behaviour suffer an increase in blood pressure which can raise the risk of a heart attack or stroke, a study found,” The Daily Telegraph reports. “But those who hear a well-timed ‘sorry’ calm down more quickly, with their blood pressure returning to normal 20 per cent faster, the research showed. Conversely, a man’s blood pressure takes 20 per cent longer to recover after an apology – suggesting men become more worked up after hearing an admission of guilt.”

2. My sister sent me an article from the CBC web site this morning, about a colossal cookbook typo with the subject line "Oops." I've made some pretty big errors by not proofreading properly but this tops it all.

3. My friend, O. posted a story to Facebook today, with the headline "Woman with parrot perched on face arrested after throwing inhaler." Note to self: Don't throw an inhaler while a parrot is standing on your face. You will be arrested.

4. I'm still waiting for my CT scan results, which could be why I'm letting myself be distracted by all this silliness.

stepping in the right direction

On the Saturday evening of the 10th Annual Conference For Young Women Affected By Breast Cancer, a group of participants went out for dinner.

Many of us had not met before that evening. We came from Texas, California, Massachussetts and Georgia. I was the lone Canadian. It was a truly lovely evening. The food was great and the conversation flowed - from the trivial to subjects of greater import, from the general to the intensely personal.

About half-way through dinner, the subject of health care reform was raised. I said that, as a Canadian, I couldn't understand why anyone would oppose universal health care, especially anyone who has had a life-threatening illness.

Most around the table agreed with me, while one woman stated that she was resistant to any more government interference in people's lives. I soon found myself addressing the pervading myths about our health care system and was asked whether it was true that Canadians were cut off from health care when we turn 75.

I said, "No, that's not true and we don't have death panels, either."

The conversation was very respectful and never tense (unlike many, many other debates on this issue) and soon we moved on to other subjects.

And today, I want to congratulate my American friends for ignoring the fear-mongering and taking a significant step towards greater access to health care.

happy news

I'm in Toronto for March Break and having a lovely time and have been online only intermittently. Yesterday afternoon, though, I got some surprising news that I wanted to share.

I found out yesterday that Not Done Yet is a finalist in the ForeWord Reviews 2009 Book of the Year Awards in the "autobiography/memoir" category.

"The finalists, representing 360 publishers, were selected from 1,400 entries in 60 categories. These books are examples of independent publishing at its best...

...ForeWord's Book of the Year Awards program was designed to discover distinctive books from independent publishers across a number of genres."

I feel very, very proud.

eye witnessed

Yesterday, the Globe and Mail ran this article about Joe Webber, a man from Aylmer, Ontario, who was falsely accused of forcible confinement and robbery. He was convicted and served nineteen months in jail, based solely on eye witness testimony Although, the perpetrators of the crime were masked, one of the victims of the home invasion identified Webber, claiming to recognize his "bright blue eyes."

Webber's eyes are actually gray. 

Webber was sentenced to 7 1/2 years in jail but was later cleared when two other men confessed to the crime.

Duane Hicks, who identified Webber, remains adamant that it was Webber and his blue (really gray) eyes that he saw behind the mask.

It's a fascinating and tragic story but it's not the first time, in recent weeks, that I've had cause to think about the unreliability of eye witnesses.

A couple of weeks ago, I was walking the dogs home from the park when I saw a woman and her Bernese Mountain Dog coming towards me. I knew them both from the park and called out a greeting as she grew closer.

J-Dog, my older, bigger dog (55 lbs, the Bernese was much bigger than he was) has been getting a little crochety in his old age. He's taken a dislike to younger male dogs, especially when he's on leash. There's never been any serious fighting but, as a precautionary measure, I've been crossing the street or making J-Dog sit when other dogs are approaching on leash. This time, though, since the dogs had met many times, I didn't think to do it.

When the Bernese got close, Jasper lunged at him and growled. The other dog reacted the same way, his owner went to pull him back and slipped on some ice. She fell into a snow bank and the force of her fall brought her giant dog down on top of her. His paw hit her in the face and cut her lip.

We were both uspet (the humans were. The dogs, having recovered from their tussle, were just standing calmly beside us). I felt terrible not to have foreseen the interaction. We were both apologizing to each other, when two women who had been walking behind us felt the need to jump in, one yelling at me and the other fussing the other dog owner.

They kept asking her over and over again if she was OK. She kept saying "yes!" We both tried explaining that it was fine, that we knew each other and so did the dogs ("That doesn't matter!" one woman exclaimed) but they were zealous in their condemnation of me (and my dog) and vociferous in expressing their anger and outrage.

I realized later, based on a few things they said, that both women believed that they had seen Jasper attack the other dog owner and the Bernese leaping in to protect her. 

And I'm sure they would have made sworn statements to that effect.

The dogs and I ran into the Bernese and his human (off-leash) in the dog park and the dogs played together happily. I apologized again for not anticipating J-Dog's bad behaviouor and she once again stated that she feels both dogs (and both owners) were at fault. She also commented on how the intervention of those "witnesses" had just made things so much worse.

I've learned my lesson. I'm now completely consistent in making J-Dog sit when another dog approaches, even when I know it's a dog he likes. And it goes without saying that the only comparison to what happened to J-Dog and Joe Webber was the absolute conviction on the part of witnesses that they saw something that did not happen.

oh oh...

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

chemotherapy and the H1N1 vaccine

As someone in ongoing chemotherapy, I have a compromised immune system. This puts me at increased risk for contracting H1N1.

I am among the priority groups established by the City of Ottawa, as is my family, and were it not for the hours long lineups (several centres closed the lineups by late afternoon), I would have had my shot yesterday.

I did call the oncologist yesterday to ask about interactions between Neupogen (the drug I take after chemo to boost my white blood cell count and fight infection). When I didn't hear back immediately I checked with the cancer centre receptionist who, told me (after checking with someone) that I should go ahead and get the shot.

Today, the nurse who works with my oncologist called and told me to wait.

The reasoning goes as follows:

Chemotherapy suppresses the immune system.

The flu shot is meant to boost it.

Having the H1N1 shot (or any other flu vaccine) too close to chemotherapy lessens the effectiveness of the shot.

Those of us getting chemo are instructed to wait to the end of the chemo cycle, get our bloodwork done (to ensure that our counts are high enough) and then get the shot the day before the next round of chemo.

This means that I will be waiting until November 10 for my H1N1 vaccine.

And washing my hands. A lot.

advice (with the benefit of hindsight)

Last week, the Centretown Buzz (an Ottawa community paper) asked me to write the article that "I wish I could have read when I was first diagnosed."



It's on the front page of this week's issue, and begins like this:

On December 1^st, 2005, I found a lump in my breast, as I was getting undressed. One month later, I was diagnosed with breast cancer. I was 38 years old, with two young kids and a very hectic life. I felt completely blind-sided.

Almost four years later, and with the benefit of hindsight, I share some advice for others who find themselves in my situation.

As I looked back on the last few years, the following key points best summarize my advice:

Bring someone with you to appointments, especially in the beginning.

Be your own advocate.

Be nice to the admin staff and nurses.

Don’t compare yourself to anyone else.

Let others help you.

Never give up hope.

The entire article is online, so you can read it for yourself.



Let me know what you think. And if you've been there, please don't hesitate to share some of your hard-earned experience.

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.