in translation

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse: 

"You're depressed. Why?"

Me: 

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.") 

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room"). 

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

kitchen conversation (he's so, so right)

My spouse (after listening to lengthy rant #342 yesterday): "Not to excuse that person's bad behaviour, but a lot of things piss you off these days."

Me: "True."

Spouse: "Oh! We forgot to put the compost out!"

Me: (String of expletives, unprintable in a blog my children might read).

Spouse (Meaningful silence)

Then we both burst out laughing.

I need to get some perspective.

But at least I can still laugh at myself.

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.

"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.

selfish (dear loved one)

I'm sorry that my fear becomes yours.

I regret that you get pulled into my panic.

I feel ill when my every cough, ache or bump twists your insides the way it does mine.

I would prefer to protect you.

I want to watch you smile, hear your laugh, feel your heart thump with joy when you pull me to your chest.

I don't want to make you scared, or sad or worried.

But I can't wish you weren't ever scared or sad or worried.

Because I need to share.

Because I need not to feel alone.

Because I need you.

beautiful eyes

That's what struck me when I met Sarah in person: she had the most beautiful deep brown eyes I had ever seen, with a lovely smile to match.

It was February 2010 and we were both in attendance at the Annual Conference for Young Women Affected by Breast Cancer. We had met online through our online community, Mothers With Cancer.

A short time after we met, Sarah found out that her breast cancer had become metastatic and she began treatment anew. A few weeks ago, she learned that the cancer had spread to her brain and she started radiation treatment. A couple of days ago, she was admitted to hospital with breathing issues. Last night, she passed away.

I won't claim to have known beautiful Sarah better than I did. But I did consider her my friend. And I will miss her.

Here are some things I knew about this remarkable woman:

She loved her three daughters very much and she was incredibly proud of them.

She was happily married.

She was a talented photographer.

She loved animals, especially dogs and horses.

She had an appreciation for good coffee.

She left this world way too soon.

Sarah, you will truly be missed. My heart goes out to your family and to all who loved you.

You can read more about Sarah at her blog, Spruce Hill. Tributes have also been posted by Jenny (cross-posted to Mothers With Cancer), Susan, Nicole, Ree and Mary Beth.

Note: Blogger was down for about 20 hours and when it came back up, this post was gone (as were the comments from my previous post). If you are seeing this twice in a row on the blog, it will be because Blogger has returned it to me.

i can relate to this...

...and so can, I would wager, anyone who has been harassed by  condescended to infantilized by dealt with an insurance company on health related matters.

Especially if you have been on long-term disability for any length of time, you can expect regular correspondence. Blogger Katherine describes this experience:

"But as sure as the swallows return to Capistrano, every March CIGNA sends me information on its Cancer Support program. Last year’s began “Good health is a gift.” This year’s reads like a grade school report:


Dear KATHERINE O’BRIEN:


The American Cancer Society estimates that two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we’re here to help…"

Most of us just sigh, groan, maybe yell a little and then toss the letters into the recycling bin (unless it is one of the letters making demands to send information we have alread sent them SEVERAL TIMES. Then we scream a little louder, call the company, get transferred to voice mail, leave a message and then never hear back, send the info as requested and then get ANOTHER LETTER requesting the SAME INFORMATION and scream some more. Or maybe that's just me.). After years of this kind of correspondence, Katherine decided to write back (CIGNA is her insurance company):

"Dear DOUG:


Thank you for your letter of March 2010! I couldn’t agree more that good health is a gift! I was blown away that you want to help me make the most of it.


It was gratifying to know that “as health care claims are submitted to us, we review them and identify steps you might take to help improve your health.” Gosh. I feel a little guilty. I mean, you are poring over my health claims and I am doing bupkis for you. Maybe I could clean out the coffee room fridge in Bloomfield some time? Police the parking lot? Just let me know.


As you might have gleaned from your research, I have metastatic breast cancer. My doctor says that in 2010, there’s no cure for metastatic breast cancer. Of course that’s what she said in 2009. So I do intend to doublecheck in 2011. I will keep you posted...


...I think it is important to take care of me, too. I see Dr. Gaynor once a month. It might be hard to see her more regularly than that. Unless she wants to join my mahjong group. I will make inquiries."

You can read the rest of the letter and Katherine's post about it on her blog, ihatebreastcancer. Thanks to Anna Rachnel (ccchronicles) of The Cancer Culture Chronicles for telling us about Katherine's letter via Twitter.

my kids are alright

I had a dream a few nights ago.

My kids were in a giant flash mob, dancing their hearts out, surrounded by dozens of other kids and adults. They were exuberant and focused, their movements fluid and in synch with those around them. My heart swelled with pride and joy.

I learned that the flash mob had been created to drum up excitement over an upcoming performance. In a couple of hours, my kids would go on stage and perform. I could tell they were ready.

Then I was handed a note. My own performance was scheduled for right after theirs. I was wholly unprepared. I hadn't even looked at my script. I was rushing off to find it when my alarm went off.

Sacha was in a play very recently. And they did organize a flash mob a week before the performance, as a form of advertisement. And Sacha performed beautifully. My heart did swell with pride.

In part, my subconscious might have been remembering the play but I choose to believe that I was also sending myself a message.

Life with metastatic breast cancer is filled with uncertainty. But no matter what happens, my kids will be fine. They are smart, talented, resourceful and resillient. They have friends and family who love them. My kids will be alright.

fat. not unfit.

I am overweight.

It's worth noting, that, even with years of therapy and a good feminist critical analysis, it still feels shameful to write that.

But it's the truth that as a result of genetics, too many diets started at too young an age (I was put on my first one when I was nine), too many emotional issues related to food and sheer laziness/inattention I am carrying around at least forty extra pounds.

Yet I wouldn't say that I'm unfit.

My cholesterol, blood sugars and blood pressure are all excellent. I have a resting heart rate of 66. And I have heart scans every three months (because Herceptin can damage the heart), so I know that vital organ is pumping along very efficiently.

I average 5.5 hours of cardio exercise every week. I run 3-4 times a week, for more than forty minutes. And, now that the snow is gone, my bike is my favourite way to get around town.

Yet, even people who know me sometimes express surprise when I mention that I've just been for a run. Or that I resumed running consistently a year ago. They are so surprised that many times, when I say "run", people hear "walk" (the fact that many people can walk as fast as I run is a separate issue entirely).

Neither my oncologist nor my GP are concerned about my weight.

And while I may not be fast, my endurance is better than lots of folks who are much thinner than I am.

So next time you see an overweight person at the gym, on the trail or on the bike path, please don't assume that they don't know what they are doing. Don't act shocked when they tell you they exercise regularly. Don't give them gratuitous advice on how to "start an exercise program" or "how to exercise safely." 

Fat does not necessarily mean unfit.

questions for candidates

From the Canadian Breast Cancer Network: Questions to ask your local candidates during the election campaign

 

Question 1: The Financial Impact of Breast Cancer

  

In May 2010, the Canadian Breast Cancer Network released the research report entitled Breast Cancer: Economic Impact & Labour Force Re-Entry, which firmly positioned breast cancer as an economic as well as a healthcare issue.

  

The economic impact of breast cancer is significant, and in many cases devastating for patients and their families. 80% of respondents experienced an economic impact following their diagnosis, often with distressing long-term financial consequences.

  

Some report findings:

• Average decline in household income was $12,000 or 10% of family income
• 44% of respondents used savings, while 27% took on debt
• One fifth of respondents returned to work before they were ready because of financial pressure
• Those who had chemotherapy had a greater loss of household income and were 49% more likely to take longer than 16 weeks off work

Survey respondents reported that the average duration of their breast cancer treatment was 38 weeks, and two-thirds of the respondents took 16 weeks or more off from work. Because Employment Insurance Sickness Benefits last for a maximum of 15 weeks, there was an average gap of 23 weeks during treatment without coverage.

  

If elected, will your government:

  

A. Lengthen Employment Insurance Sickness Benefits for Canadians undergoing treatment for breast and other cancers as well as other illnesses and chronic diseases that require long periods of treatment so that no one who is ill is penalized by the current limit of 15 weeks of sickness benefits?

  

B. Cancel the two-week waiting period for EI Sickness Benefits so that sick Canadians are not penalized?

  

C. Immediately extend the Employment Insurance Compassionate Care Benefit to cover family caregivers providing care to those with breast cancer, other cancers and other long-term conditions?

a. Increase the benefit to 75% of workers' earnings?

b. Increase the benefit period to a maximum of 52 weeks?

c. Allow partial weeks of compassionate care leave over a longer period?

d. Expand the eligibility criteria beyond imminent death within 26 weeks?

  

Question 2: Drug Approval Process in Canada

  

The drug approval process in Canada is lengthy and complex. Currently the performance targets as outlined on the Health Canada website is 300 days for "non-priority" drugs and 180 days for "priority" drugs.

  

Once drugs are approved by Health Canada, cancer drugs pass through the Pan-Canadian Oncology Drug Review (pCODR), formally the Joint Oncology Drug Review (JODR).This process can take up to a year for recommendation to be made. Provinces and territories may then either confirm or disagree with pCODR's recommendations, often resulting in further significant delays and an uneven patchwork of drug coverage across Canada.

  

Cancer patients in Canada face unduly long waits for much-needed drugs, and medications available in one province or territory may not be available in another. But when it comes to cancer treatment, especially for advanced or metastatic cancer, time is of the essence.

  

If elected, how will your government:

  

A. Ensure that the approval processes for new treatments are shortened to permit timely access to new treatments for those who need them

B. Ensure that no cancer patient in Canada goes without internationally recognized gold standard treatments

  

Question 3: Wait Times 

The Canadian Breast Cancer Network's 2008 Breast Cancer Wait Times in Canada Report Card showed that not all Canadian women are receiving equal access to breast cancer treatment. The project was undertaken in order to gather information about what happens across Canada in terms of wait times in four important areas: from abnormal screen to diagnosis, from diagnosis to surgery, time to radiation, time to chemotherapy.

  

We found some outstanding examples of best practices and much evidence that many jurisdictions across the country are working on innovative solutions to the wait time issue. However, the most disconcerting finding was that there are no national benchmarks for wait times and no standards for wait time reporting systems across the continuum of care. The data reported are calculated differently across jurisdictions making it impossible to compare wait times. This has not changed since 2008.

  

In the absence of comprehensive and consistent wait times data, there is no certainty that people diagnosed with breast cancer are receiving optimal care.

  

This is a complex issue. There needs to be national benchmarks for maximum wait times for diagnosis and treatment. Electronic health records must include consistent reporting of wait times across jurisdiction. Best practices must be shared and implemented across the country. Access to timely cancer care cannot depend upon ones postal code.

  

If elected, how will your government:

  

A) Provide the infrastructure necessary to ensure comprehensive and consistent standards for wait time reporting for breast cancer diagnosis and treatment across Canada

B) Ensure that national benchmarks are established for wait times associated with surgery and chemotherapy

C) Ensure the adoption of electronic health records

  

  

Join our survivor advocate campaign and make canada's decision makers aware of the issues that are important to you. Contact khurley@cbcn.ca for more information on how a little bit of your time can make a big impact.

i'll take it.

No nausea.

No bad taste in my mouth.

No rage or sadness.

No aches and pains.

I'm just very, very tired.

I'm not complaining.

what if nothing changes?

Today is a treatment day.

For the first time ever, I will have Herceptin on its own (if you don't count the Demerol and Gravol I get to keep the shakes and fevers at bay).

Some people have almost no side effects with Herceptin. Some feel like they have the flu.

Will the fact that my body has such a strong response to Herceptin mean that I feel more of its side effects?

The break from chemotherapy is meant to help me heal and rebuild - physically and emotionally.

The break from chemo is also a risk.

Here's hoping it all works out for the best.

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.

mixed. but good. i think.

And I'm not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.

Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won't get in to see the gastroenterologist until March 21st). All my results were negative - no celiac, no bacterial infection, no cancer. It's all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I'd felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, "It's time to take a break."

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I'm being taken off the chemotherapy not because I've been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, "You can't stay on vinorelbine forever."

I'm going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don't think it has the lasting toxicity of chemotherapy drugs. I'm likely to bounce back more quickly after treatments.

So we'll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

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.

feeling better

Because I've been able to go out for walks and for runs with the dog.

Because I had a really nice weekend and a very nice Valentine's Day (especially for someone who doesn't really celebrate it).

Because I have so many wonderful people in my life.

Because some of my symptoms have improved considerably (and they most definitely did not improve at all before I was diagnosed with the recurrence of cancer).

Because I have survived experiences that have been far more physically traumatic (like giving birth. Twice) than an endoscopy could possibly be.

I am feeling better today.

when Google is not your friend

So I've been having some (ahem) gastrointestinal issues for a while. Last spring, I was diagnosed with GERD. Things got better after I made some amendments to my diet and started taking meds (so much better that I got lazy about the diet and just took the meds). But now the issues are back in spades, along with abdominal discomfort and a feeling I can only discribe as "weasels chewing on my innards."

A couple of weeks ago, I went to see my GP who doubled my dose of the meds, ordered some blood tests and other (ahem) samples and put in a referral to a gastroenterologist. She told me that it would likely be a six month wait.

I had chemo on Tuesday, February 1st, which means I should have been feeling more or less like myself on the week end. I did not. By Saturday, I was still achy, weak, nauseated and the stomach weasels were out in full force. On Sunday, I felt no better.

On Monday, I went back to my doctor. 

She examined me and, to my enormous relief, reassured me that my liver is where it should be (not swollen and tender like it was when I was diagnosed with liver metastasis. She also said that I should  take comfort from the fact that my blood counts, taken less than a week before had shown all my liver functions to be perfectly normal.

We discussed the possibility of me having contracted a parasite or a virus (I certainly know enough people who've been ill, including my two kids. My suppressed immune system - from the chemo - makes me susceptible to every passing illness) or that anxiety could be playing a role in my physical condition.

My doc is a great advocate, though, and she picked up the phone while I was still with her and left a message for the gastroenterologist, asking if I could be seen more quickly.

I left her office feeling almost euphoric, with all health related anxiety pushed to the back of my mind (there was enough other anxiety to take up all the space in the forefront).

Then yesterday, I got a call from my doc's office, telling me that I have an appointment with the gastroenterologist - and an endoscopy - scheduled for February 17. That's really soon.

I've heard that endoscopies can be really traumatic experiences, so I Googled "endoscopy" just to reassure myself (seriously, that's what I told myself).

Well, not only do I not feel reassured (they shove a camera down your throat to look at your innards! I have a very strong gag reflex) but I am now freaking out about the test and about exactly what it is they might find down there. It could be nothing. Could be something relatively benign. Or it could be...well I'm trying not to think about it.

I haven't been for a run in more than a week because of chemo and the (ahem) gastrointestinal issues. But I think I might risk it.

small changes

My life is a work in progress (some days I feel like there has been more progress than others) and I can never quite escape the urge to make changes as the new year rolls in.

In the past I have I not found sweeping changes to be sustainable. Even my list of monthly changes last year didn't last past June. 

However, my pledge to make soup was a huge success and has served me well. In fact, today's lunch was soup (kale, sweet potato and red lentil with home made turkey broth) I made and froze a couple of weeks ago. During a chemo week, when I don't feel much like eating anything, it's a real gift to have something easy to heat up and healthy to eat.

This year, I resolved that it would suit me best to make one new small change every week. And so far, this is working pretty well. I haven't been perfect but the changes are adding up and I do feel like new, healthful habits are being created.

So today, on the eve of the Chinese New Year, it seems fitting to come clean on the blog and go public with my changes. You can all help me stay accountable.

And do let me know if you have made any healthy changes so far in 2011. I realized the other day that I'm far from alone. Over at BlogHer they were talking about taking small steps to get healthy for the entire month of January. How'd I miss that?

Here are my changes so far:

Week 1: Weigh in and record my weight every Monday.

Week 2: Begin doing strength training exercises developed for cancer survivors. I've been doing these on run days and plan to work up to about thirty minutes, three times a week.

Week 3: Drink no more than five alcoholic drinks per week. I've gone over this limit every week so far but not by a lot.

Week 4: Drink more water. My nutrionist recommended drinking as many ounces as half my weight in pounds. This is a lot of water.

Week 5: Meditate every day. Start at five minutes and work my way up to twenty. This is something I have been meaning to do for a while. So far this week, I have meditated twice for ten minutes each time. It's a start.