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.

third row from the top, second from the right

"gleeBE the Musical is the story of a group of talented, ambitious young people vying to get into the fictitious Arts Sanctuary school in the Glebe. GNAG’s spring theatre production, tells the story of their quest for this all-too-often elusive goal."

(Note: The Glebe is a neighbourhood in Ottawa, Ontario).

a bright light lost

Smart, funny, creative, talented Sara has passed away.

I only knew her as an online presence (although we did once spend more than an hour on the phone together) but I am grieving tonight and for all the people that love her.

I am told that Sara loved red wine and good tequila so if you partake of either of these tonight (and even if you don't) please raise a glass in her honour.

I am going to put on the lava earrings I bought from her (they are my favourites).

Damn. Cancer really sucks.

So what did I do wrong?

There is a new study out there saying that half of all breast cancers can be prevented. So what did I do wrong? That's what I feel. When I first read this I thought that its good news. But then I started thinking. What did I do wrong to get breast cancer before 50? Is it some how my fault?

I eat a good diet, I get exercise, blah, blah, blah. And there I end up with cancer. Twice. Maybe its my elementary school which is currently being turned down because its full of PCBs. Maybe because I stayed up late, smoked, and drank some. Who knows. But don't make it my fault.

But then I decided what I really don't like is the title of the article I first found: "Up To Half Of All Breast Cancers Are Preventable". That article was based on an article written in CA, A Cancer Journal for Clinicians where the original article is called "Priorities for the Primary Prevention of Breast Cancer" . Its all in the wording. Take the blame away from the patient please.

If you read the original article, it focuses on prevention options such as exercise, healthy weight, alcohol consumption, and more. Patients who drink alcohol, do not exercise, and/or maintain a healthy weight, have a greater risk of developing breast or other types of cancer. That's helpful.

Before breast cancer, I was thinner, exercised and I less to drink about, so go figure

Cancer & the Blame Game

One of the lesser known facts about life in Texas:  the yellow haze.
          Every spring, for about a week, the pollen descends.  It  covers cars like a thick dusting of snow. You track it across the kitchen floor, the cat drags it in, you wash it from the window screens and wash it off those nice new black pants. And if you suffer from allergies?  Kiss your usual face farewell.  I'd take a photo of what my eyes look like right now but I'd hate to make you spit out your coffee.
          I was ruminating (yes, I've been known to ruminate, fulminate, and ponder about cancer related issues DAILY) about an emerging oddity in cancer culture a friend told me about Sunday. It's a new version of the blame game.
          The blame game -- especially as far as women are concerned - has been with us ever since Eve. Its range stretches from "what did you do to deserve that?" to "what did you do to deserve THAT?"
           Surely, this line of reasoning goes, you did something to get raped, abandoned, fired, or now, diagnosed with cancer.

           Here's how it works.
           Bad character, "You seem sorta down."
           Good character, "I am.  The coolest woman I know is dying of esophageal cancer. I'm flying out to see her this weekend - probably for the last time."
           Pause.  Bad character (how could I make this up?) "Did she smoke?"
           Good character, looks at the other, runs character analytics, measures the metrics of the friendship. "No, and you can blow it out yours."
        
           Another version:
           Good character.  "But I can't believe it.  She's the healthiest person I know, eats organic food,  exercises.  All that. And this is her third bout with melanoma."
           Bad character.  "Does she lay out?"
           Again. Why would I make this up?

           At best these exchanges are the grist for Miss Manners or the king of manners, Christopher Hichens.
           At worst these cases bode poorly on the capacity of one person to have empathy for another, for the capacity to share, to be human.
           When people use prevention messages to distance themselves from experiencing the pain of another's cancer, then we have more work to do than raise awareness.  Sometimes too much information is just that:  too much. Let's continue to deconstruct the fear so that people aren't so afraid of being diagnosed with cancer that they can't hear what another person is saying.
           After my friend told me about this I took the dog for a long walk then sat down on the deck.  I put my hands down on the armchair without thinking.  They were covered with pollen.  It's like these inhuman reactions to real human suffering.  I so wanted to wash it all off.

Stay real,
Jody 

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.

National Coalition for Cancer Survivorship

There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.

Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.

They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.

I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...

As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.

If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.

small changes: two steps forward...

It's high time I reported in on my plan to make small and lasting health-related changes in my life this year. 

It turns out that a small change every week is too much to expect, so I'm going to stop numbering them that way. It makes me feel like less of a slacker.

First change: Weigh in and record my weight every Monday.

My scale is broken and I have yet to have it fixed or replaced.

Second change: Do strength training exercises developed for cancer survivors. Work up to about thirty minutes, three times a week.

I've done these exactly six times in the six weeks since I last updated. It's too easy to talk myself out of doing the exercises. On run days, I tell myself that I'm too tired or don't have time and on non-run days I either don't think about it or don't want to do the exercises in my street clothes. I'm lacking both structure and discipline.

I've been pondering going swimming. I also did something last week that I may live to regret. I bought a twenty class fitness pass from a local gym. It only cost twenty dollars, and I have two years from the first class to use up the pass. It's pretty low risk but I'm worried I'm going to hate it.

At least it addresses the structure question.

Third change: Drink no more than five alcoholic drinks per week.

I seem to be better at breaking old habits than starting new ones. I've had no problem with this goal.

Fourth change: Drink more water.

My original goal was to drink around ninety ounces a day. That was unrealistic and made me feel hungry,jittery and even a little nauseated. Also, I was constantly running to the bathroom. Instead, I am now aiming for the more realistic eight glasses a day. This is no problem for me.

Fifth change: Meditate every day. Start at five minutes and work my way up to twenty.  

I suck at meditating. I just can't seem to still my brain, even if only for a few minutes. I find myself making lists, wondering what to do next, even mentally writing blog posts about how hard it is to meditate.

I suppose I should keep trying, as lots of folks I respect tell me how much they gain from their daily practice. It's a struggle though. I'm comfortable with silence. I don't tend to listen to my ipod when I go for walks or running but I do find sitting still and silencing my thoughts to be hard, hard, hard.

And see above re "structure" or lack thereof.

Sixth change: Always sit down to eat.

It's a very interesting experience to notice how often I pop food into my mouth while standing up. Sometimes, I only think about my plan to change after I'm done. But it's a good habit to break and I'm glad I'm doing it.

And announcing...

Eighth change: Take all my vitamins and supplements.

A while ago, I became so overwhelmed with the amount of vitamins and supplements that had been recommended for me that I just stopped taking any of them. The bottles were taking up way too much room in my kitchen cupboard and I couldn't find a vitamin box big enough to accommodate them all. I everything up in a box and put it in the bathroom in my basement.

Last Thursday, I found a giant pill box and spent half an hour on the week end getting organized. Yesterday, I took most of the vitamins (at different times throughout the day) and had raging heartburn by early afternoon. 

Today, I have yet to take any. 

I have recently re-connected with my nutritionist and we're going to review the supplements I'm taking, at an appointment two weeks from now. I'm also confused about interactions. Some vitamins should be taken with others and some shouldn't. Some taken with food and some not. Is it any wonder I put them all in a box in the basement?

Perhaps I should be setting priorities. What should those be? Calcium? Vitamin D? Fish oil? 

Anyone else out there have the problem of getting heartburn when you take vitamins?

As always, I welcome your thoughts and feedback. What changes have you made for your health in the last while? How's it working out?

Doctors and coping with multiple ailments

Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.

Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.

If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.

But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.

Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.

So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...

The eternal life of the patient and questions with all my ailments.

sesame challenged

My younger son was a diagnosed with a bunch of food allergies when he was very young. He's outgrown some of these (eggs, milk) and some seem to be around for the long haul (peanuts and tree nuts). 

Among the most insidious of these is sesame. It was the first allergy we suspected and has always been the one we find the most frustrating. It's in everything - try reading labels on bread products for a few days and you'll see what I mean.

Last year, we were offered the opportunity to do a blood test that can determine the degree of reaction to some common allergens. Out of a possible 100, Daniel's response to peanuts was as high as could be measured (this allergy is not going anywhere any time soon). His sesame reaction was 0.84. That's barely a reaction at all. When Daniel had no reaction to this year's sesame skin test, the doctor suggested a sesame challenge.

This, as I remember it, was our experience:

Sunday:

2:00pm: Tim goes out to buy Sesame Snaps.

3:00pm: Tim tracks down Sesame Snaps, discovers that they "may contain peanuts."

4:00pm Tim makes own version of snaps, with sesame seeds, sugar, ginger and lemon.

10:00pm-2:00am I have insomnia, partly due to sesame challenge. This may also be due the fact that I discover my free games of Chuzzle were re-newed when we reformatted my computer.

Monday:

9:00am: Daniel and I arrive at the allergists office.

9:10am: The doctor explains to us how the day is going to unfold.

9:12am: The nurse is blown away by our home made sesame snaps. Apparently most folks just bring in seeds.

9:20am: Daniel's arm is scratched with a bit of sesame. There's a bit of redness (which might be from being scratched but nothing more). Daniel says that it's itchy but remarks that "it might be psychosomatic."

9:25am: The doctor gives us the go ahead to continue.

9:45am: Daniel eats a bit of sesame snap.

9:50am He insists that his lips and tongue are itchy and swollen. I suspect anxiety (we have never been helicopter parents but I can only imagine how he must feel after practically a life-time of hearing the message - from many directions - that a food allergy can KILL you). The nurse sees no evidence of a reaction.

9:51-9:59: I attempt to distract Daniel with hang-man, offer him lunch out and cupcakes as a reward if he sticks it out.

10:00am: The doctor examines Daniel and sees no evidence of a reaction. Daniel is still anxious. The doc holds up a mirror so Daniel can tell that he looks fine. He soberly informs my eight year old that he can walk away now "but you will have to continue to abstain from eating sesame."

10:05am: I tell Daniel that he can have the whole day off from school.

10:06am: Tim drops off Daniel's DS.

10:10am-12:00pm: Testing resumes. Ever larger amounts of sesame are consumed without hesitation or reaction.The last couple of times, Daniel barely looks up from his Pokemon game.

12:00pm: We are dismissed, with one fewer food allergy on Daniel's list. The doctor (who remarks that Daniel is "a different kid" now that the test is over) instructs Daniel to eat lots of sesame in the next little while.

12:30pm: We celebrate!

Anyone know a good falafel recipe?

Treating Chronic Pain with Exercise

It seems a bit contradictory but exercise helps relieve chronic pain. Its one thing if you have an injury that needs to heal but then they send you to physical therapy to regain range of motion and start movement. It may be include some ouching but it means it is helping as well.

I have fibromyalgia and RA (in case you  haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).

Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.

Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.

However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:

"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.

If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."

This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.

inside laurie's head

saying "no" to:

beating myself up

people who make me feel bad about myself

feeling ashamed

hiding from people who love me

giving into my fears

jealousy

Saying "yes" to:

spending time with the people who fill me up

reading for pleasure

tapping my own creative resources

trying new things

fun

talking to my Mom more often

giddy about:

all the great books that are available to read

the way my kids and spouse make me laugh until I cry

dog bellies and snouts

the potential of things I could knit

the thought that I am a Writer

scared of:

dying

not being able to read, or write, walk my dogs or play with my kids

writing fiction and discovering that I don't have the talent for it

anything bad happening to someone I love

deeply inspired by: 

beautiful prose

my sister

my friends

my kids

Lene

being in love

obsessed with:

the clutter in my house (not that I do anything about it)

wondering where the day goes

finding peanut and nut alternatives

thinking about things I could knit (as opposed to actual knitting)

tracking what books i read and planning what books i'm going to read next

Scrabble

in love with:

Tim

my boys

the dogs

feeling the sun on my face on a warm spring day

saved by:

blogging and my journal

world class health care

Tim

the people who love me

good chocolate

finding a reason every day to be happy.

and you?

Thanks to Mocha Momma and Dancing Mermaid for inspiring me to do this.

Menopause is the new puberty, minus the sex drive….

The new hairy boobless me

Cancermenopause, yes it is a word. It is my word and do not even try to tell me different! Here is the deal, most woman hit menopause in stages. They gradually come on and you learn how to deal with them. They sometimes give you hormones to balance that all out as well. Then you get stupid dumb breast cancer and things change in the menopause world! When they take ALL your hormone out and you cannot have any hormone because you have a hormone cancer, you my friend are in full blown cancermenopause! I remember being in the hospital and about 7 hours after surgery the nurse said “have you had a hot flash?” I thought, there is no fucking way after 7 hours that would happen. AHAHAHAHAHAHAAHAH!!! I was sitting watching “Bridesmaids” with my girlfriends, nice and medicated from the pain pills, eating some firecracker chocolate (how apropos) when holy hot sauce the wave of heat came over me. It is literally like you are burning from the inside!! You instantly want to rip all your clothes off and jump in a bath of ice, would not have been a pretty sight since this was 28 hours post op!! No shit this happened that fast. Did I tell you I cry during “Walking Dead”, who does that? It is zombies and killing but when a walker dies it is water works, I mean they were someone’s loved one, wah wah wah! One minute I am super happy cause the kids are sleeping the next homicidal cause Tom left the cupboard door open then I am sobbing cause Anthony hugged me. I know you are thinking that is normal for me but sister I am telling you I do NOT CRY!!! The rest of that is normal do not leave the god damn cupboard doors open. I feel like I am on an emotion roller coaster. I swear to god Menopause is the new puberty! Can we talk hair GROWTH!!?? Most of my cancer girls are wishing their hair would come back in, trust me Denise you are not hairy at all, Cecile if I could give you my status on this I would. They took the estrogen out now my testosterone is on over drive. I need a haircut every other friggin week, I am shaving at an alarming pace and do not even look at my arms! Crap, I am full blood Italian I do not need any more damn hair!! The night sweats followed the night after the surgery. You wake up drenched in sweat and not wanting anything to touch you, sorry Tom! I now am basically sleeping naked cause that seems to help, again sorry Tom to make you get all hot and bothered. Wait that is what I am but not at all in the sexual way, UGH!!!! See it isn’t just night sweats, hot flashes and mood swings it is all the other shit that goes with it. Now one would think with all that testosterone I would be well, wanting to have lots of sex. NOPE! UGHHHHH, sex drive is in grandma speed. I love my husband and all he does for me, especially here. This is the one time I agree with my family, god bless Tom! WTF, took my boobs, my girl parts, my energy, left with scars, and now people sex drive is added to the list. Does anyone have any Viagra??

Your brain on creativity

I have blogged this before that during chemo a friend told me I needed a hobby and I took up knitting and crocheting. That was the fall of 2007. I have since made scarves for almost everyone I know and even ventured into craft shows where I sell my wares at the holiday season. I have become a yarn junkie and am a member of SABLE (Stash Acquired Beyond Life Expectancy).

I have come to like knitting and crocheting a lot. I like to learn new techniques and create different items. I might even make a hat this year.When I feel like crap and not into doing much of anything, I sit and knit and it relaxes me.

Now I have proof on its benefits. Yes there are health benefits to knitting and other crafts. I'm not sure why it took so long for people to figure things out.

"Crafting can help those who suffer from anxiety, depression or chronic pain, experts say. It may also ease stress, increase happiness and protect the brain from damage caused by aging."

Basically when you are stressed, your brain is in the fight or flight mode. It doesn't distinguish between kinds of stress -  another chemo infusion or another PET scan or, to quote the article, a bear attack. But the brain can only process so much information so when you knit/craft, your brain focuses on the repetitive activity and your body relaxes. Here's the fancy stuff:

"Our nervous system is only capable of processing a certain amount of information at a time, he explains. That's why you can't listen and understand two people who are talking to you at once. So when someone starts creating, his existence outside that activity becomes "temporarily suspended."...

...The effects of flow are similar to those of meditation, says occupational therapist Victoria Schindler. Science has shown meditation can, among other things, reduce stress and fight inflammation.

Our bodies are in a constant state of stress because our brain can't tell the difference between an upcoming meeting with the boss and an upcoming bear attack, Schindler says. The repetitive motions of knitting, for example, activate the parasympathetic nervous system, which quiets that "fight or flight" response."

So I am happy to keep on knitting and selling my wares. And now I know that  its helping me in more ways than I expected.

author not pictured

Some time between when we pointed the car towards Florida and made our way back (we had a glorious time, by the way. Few photos this year but it's still this beautiful in Siesta Key), my book was published.

The dogs were less than impressed but the human members of my family are all very proud and I am so pleased to actually have a copy to hold in my hands. You can get yours from Women's Press or wait for details of the launches we are planning in Ottawa and Toronto.




And last night, S. won an Honourable Mention in the short story category (for 9-11 year olds) in the Awesome Authors contest, run by the Ottawa Public Library. His story, "The Man in the Photographs" was about how he never wants to seem as uncool as his father. "Pure fiction," he said at the awards ceremony.

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.

not unrelated to my last post

Last night I dreamed that I had a lump in the lymph nodes above my collar bone.

I woke up terrified.

The comments on my last post were among the most thoughtful, moving and provocative that I've ever read. I have much to think about. Go read the stories that and responses that women shared with me. I feel grateful to each one of them.

Today, I am going to take the dogs for a walk and then ride my bike (unless I decide it's too cold) to Sassymonkey's house, where we will eat, drink, knit, watch a movie that has nothing at all to do with cancer.

how i fill my days (for better or worse)

where i've been

Update: I've decided that my habit of using initials instead of names makes some sentences confusing and nearly unreadable. Henceforth, I will use my discretion - and mostly use names.

Hey there.

March has been a busy month for our little household. And last week was March Break. We all drove to Toronto and then our oldest, Sacha, went to visit two of his parental grandparents in Florida. It was his first flight (other than a short hop between Toronto and Ottawa) on his own (and he's now too old to be an "unaccompanied minor"). 

But I'm getting ahead of myself.

It seems that I'm not so great at multi-tasking these days. I have lots of blog posts in my head but before I write them, I thought I'd catch you up on what we've been up to since my last post.

On Saturday, March 12, I ran a bunch of errands and packed for our week away. We also went shopping for new clothes that my 7 year old could wear for a theatre date with his Grandma in Toronto.

He was very pleased with this outfit. The photo doesn't do him justice.

On Sunday, March 13, we drove to Toronto. That evening, Tim and I went out for a delicious Indian meal to celebrate our 20th anniversary (we celebrate the anniversary of our first date because our wedding anniversary is September 7. At that time of year, our lives are so busy. Besides, March needs a reason to celebrate). It's hard to believe it's been that long - and we still like each other.

I started my day on Monday, March 14 by lining up outside the Toronto office of Passport Canada, since we had realized the previous Friday (at 4:30) that our son's passport had expired (I can now safely confess this, as he has been and returned to Florida and you all can know that our parental ineptitude didn't lead to tragedy). I was second in line (well before dawn) behind a woman and her two young children from Northern Ontario who had been turned away from their flight to South Carolina the previous day (the woman's MP had assured her that her son could travel to the US on an expired passport. He could not). Her name was also Laurie and her boys were also five years apart. We bonded, as we stood on the pavement outside the passport building for 90 minutes.

Once the new passport was sorted, Tim and I took our youngest to the zoo (Sacha opted to go check out the  TIFF building with his Grandma). I didn't take any pictures but we had a great time. It's a sprawling place with animals that appear to be reasonably content. At least I hope so. Daniel was ecstatic. His favourite animals were the gorillas and the bats (no photos. I was too distracted and perhaps still groggy).

On Tuesday, March 15th, Tim drove Sacha to the airport in Toronto (I was happy not to go, since I was beside myself with anxiety) and then headed back to Ottawa to work (he was extremely patient with me as I texted him every forty-five minutes for updates).

I was happily distracted by the wonderful company of my friend Andrea We went out for brunch and then spent a few hours at the Purple Purl, one of my favourite places in the world. Andrea's spouse Patchen joined us for dinner and we three had a lovely meal. I was back at my Mom-in-Law's place before my seven year old who had spent the day with Grandma and gone to both a Second City kids' show and Billy Elliott.

On Wednesday, March 16, Daniel and I took the train to Guelph, where we hooked up with some cousins and went to the Butterfly Conservatory. Despite the heat in the building (I looked with envy at the folks who'd worn shorts), we had a great time. Besides the amazing butterflies (a gorgeous blue one landed on Daniel, to his great delight) there were many kinds of birds, fish and turtles.

Daniel and his young cousin Y. had some strong mutual admiration going on.

On Thursday, March 17, was primo cousin hanging out time. Daniel loved being the oldest cousin. Five year old N. (whose two older sisters were in Florida with Sacha) seemed equally pleased to have some boy time. 

I took the boys to see Mars Needs Moms in 3D (great animation, problematic movie) and then we went to a really great park. That evening, the boys entertained each other happily over dinner out (at Swiss Chalet - the pubs were packed with partiers dressed in green) and my brother-in-law and I had the chance to converse in complete sentences (my poor sister-in-law was at home recovering from a very bad case of food poisoning. She was more of a trooper that day than I would have been in her shoes).

On Friday, March 18, we returned to Toronto and I got to spend the afternoon and evening with my dear friend Leslie. We had lunch, browsed the Distillery District, went for a big walk along the Boardwalk and then had dinner at our favourite pub over pints. Meanwhile, Grandma took Daniel up the CN Tower and for a swim at the Y.

We took the train home on Saturday, March 19. We watched far too many episodes of The Magic School Bus  but not once did Daniel say, "How much longer?" or "Are we there yet?"

It was a very good week.

The last couple of days have been focused on re-entry - catching up with friends, going to appointments and making endless lists of things to do. As of this evening, Sacha is safely home. Tomorrow we can return to routine (bring on the fights about homework and cleaning up bedrooms). Whatever form it takes, a break from routine can be a very good thing.

Disaster Drill

Two words:  flash drive.
           Two more thoughts.  Buy one. Then compile your medical history, current medications and other pertinent medical information into a document and transfer it to the drive.  Zip that puppy into your wallet and leave it there. You can also store the document in Dropbox or another web-based program like Backupify just in case (in emergencies, sometimes we lose our wallets).
           Better yet:  Park all of your medical information on a mobile app (more below) so your phone becomes your personal medical library.
           You've just taken a big step forward in disaster preparedness.
           None of us can “prepare” ourselves for a disaster on the scale of the Japanese earthquake and tsunami of March 11 and the subsequent nuclear reactor failure. This would equate to imagining your current life – the streets where you walk the dog, all the neighborhoods,  the closest grocery and dry cleaners, the closest hospital and shopping center – obliterated and splintered into pieces for miles.  All of it washed away and covered in mud. Even journalists, those soldiers of information gathering in dire circumstances, have been shaken while covering this disaster.    
           Some of my first thoughts following news of the earthquake, before I'd even seen images or understood its magnitude, concerned cancer patients. What would you do, I thought, if you were in the middle of chemotherapy? Or recovering from a bone marrow transplant BMT? The week the earthquake hit I'd been visiting with Ann Gregory and her husband, Chris. They are BMT veterans. As she was about to undergo her second bone marrow transplant, Hurricane IKE hit the gulf coast. Her hospitalization at MD Anderson went on without a hitch. But the apartment where Chris was staying had a sewage backup as well as power failure. For a week he lived in their car in the MD Anderson parking garage.

Lovell A. Jones, Ph.D.

            Following Hurricane IKE, when thousands of Houston area residents were without power for close to a month,  MD Anderson operated successfully for significant time on generators before full power was restored.  Lovell A. Jones, Ph.D., MDA's director of the Center for Research on Minority Health, also serves as Principal Investigator of the  Secure Gulf Coast Consortium, seven academic and health institutions that are working together to improve disaster readiness in vulnerable populations from Texas to Florida. 
           He says the best thing any of us can do is to have all of our medical information on a flash drive. "Until the electronic medical record becomes a reality, the best thing any cancer patient can do to guarantee continuity of care is have all their information on a flash drive.  We've also found that we need to tell people to dedicate that drive to strictly to health info.  Nothing else."
           The SECURE project will be working with elementary school children on disaster preparedness in order to increase everyone's knowledge of preparedness, especially their parents.  What consortium investigators at Meharry Medical College have found already is that stress during events such as Hurricanes Karina, Rita and Ike seem to increase infant mortality following such storms.
           There are steps all of us can take to keep us from becoming a statistic before our time.  I've compiled some info below.  I hope you find it helpful.  For those in states bordering the gulf coast, I've also included the RED CROSS link on evacuation routes.  
           And by all means,  if you have helpful links or mobile apps to share please let me know and I'll add them to the list.  


Stay well,
Jody 

*Mobile Apps: 
    1) SOS4Life  Cool app (IPhone & coming to Blackberry) that holds your medical history AND  translates it into seven different languages.  
    2) IChemo Diary Merck. (Free download from Apple) Program to monitor your chemotherapy treatment and side affects.  
    3) In Case of Emergency:  (Free Blackberry download): to store emergency contact info.

*Ways to Prepare for a Natural Disaster -- Helpful, consise info./        http://www.breastcancer.org/tips/emergencies.jsp 



* "Coping with Cancer After a Natural Disaster"  -- Excellent summary from American Cancer Society 


* "Emergency Preparedness & Response" Center for Disease Control 


*Red Cross Shelters


On Twitter #FF @CDCEmergency @CrisisSocialMedia (#smem)