One woman's stories, adventures, observations and rants, lived through and beyond metastatic breast cancer.
Tuesday, July 31, 2007
he cracks me up
Papa: "I don't like killing."
D.: "He didn't get killed. He died because he was old. And an arrow went through him."
Observation 1: At least he knows what his parents values are even if he hasn't completely absorbed them.
Observation 2: That y chromosome has a pretty strong influence. Parenthood has made me renounce long-held convictions in the nature-nuture debate.
I will start to work on my Chicago and BlogHer updates, pics and observations tomorrow, after the Demerol wears off.
Until then, you can find the first batch of photos at Flickr.
I'm nowhere near done but wanted to share. Please excuse all the pictures of the jelly bean in Millenium Park. We really liked that thing.
Actually, I really liked it but my spouse LOVED it. I had to drag him away to get food, as he protested, "I want to get more pics of the bean!"
Monday, July 30, 2007
home is where my heart is
I crawled into my hotel room (near the Toronto airport)at 2:00 this morning. I spent the last several hours of my trip looking forward to being able to take this pic of my beautiful sleeping son (my spouse and the boys were at T.'s brother's place for the last few days. My oldest stayed on to hang with his cousins and my spouse and youngest son checked into the hotel near the airport ahead of me).
He woke me at dawn with a joyful cry, as he hopped into my bed and went back to sleep on my pillow.
When he was cuddling with me a little (OK, a few hours) later, his papa asked him if he was happy his mama was home.
"I was happy to see her this morning. I'm happier now that she's awake."
We're home now.
I have so much I want to share with all of you but I really do need to go to bed.
Sunday, July 29, 2007
o'hare: my new home away from home
I ordered a beer with my dinner in the restaurant. For the first time since I can remember, I was asked for ID. I said, "Really? You've just made my day! I'm turning 40 on Saturday!"
I gave myself plenty of time so that I wouldn't have to rush when I got here. I needn't have bothered. My flight has been delayed. I will arrive, as I left, in the wee hours.
grateful (a post before I leave for the Chicago airport)
I owe you lots of updates (and I have pics!) but I just wanted to say a heartfelt thank you to all of you who made this trip possible.
My dear friends and family,
I had a wonderful time at the BlogHer conference, made all the more special by the fact that this trip was given to me by people who love me. I don't actually have the words to convey how meaningful your gift has been (not to mention the fact that I would not have been able to pay for it!).
And I should tell you all that I told the story many times over the last few days of how my friends gave me the trip to BlogHer as a 40th birthday present. They were always touched (some even got shivers and tears in their eyes). My 10 second post was even part of a slide show at the beginning of the conference.
I have a friend who often speaks about being a lucky person. I am so lucky to be here. I am lucky to know each of you. I am just really freakin' lucky.
Saturday, July 28, 2007
today was a very good day
I am exhausted.
So glad I'm here.
Today was a very good day.
Friday, July 27, 2007
liveblogging from BlogHer part 2: compromised
And I know I'm mad at Yahoo(they capitulated to outrageous censorship and oppression in China) but I just grabbed some swag (paper clips and jelly beans), as well as a free Americano. Apparently, I can be bought, when decent coffee is involved.
I am now attending a session on online communities.
wish u were here (first post from BlogHer)
I am back in high school, except less confident. I have become such an introvert.
The one person to whom I told the title of my blog, said, "That's heavy." (I replied that no, it's not).
So...I really do miss you, my online homies. I miss my IRL ('in real life') friends and family but it's my online community, the folks who always have my virtual back who I wish were here.
Especially, my sister activist, smartass, creative cancer bloggers.
Ok, so it's only 9:30. You can laugh at me when I have settled in and am doing fine.
But right now, I am freaking out.
Wednesday, July 25, 2007
i love chicago
Yesterday, while functioning on very little sleep, we went on an architectural boat tour and hung out in Millenium Park.
Today, we went to the amazing Art Instituteof Chicago and had an indescribable meal at Frontera Grill.
I am full, happy and tired.
update to 10 seconds
I was definitely someone who defined myself by the work I did (research/communications for a public sector union).
Cancer has made me re-define myself.
I miss working.
But the silver lining here (other than a renewed appreciation for the myriad other good things in my life) is that if it weren't for the cancer I would not have re-discovered my love for writing.
Which is something else I should have mentioned in my 10 second blurb.
Tuesday, July 24, 2007
10 seconds for BlogHer
My friends gave me this trip to Chicago as a 40th birthday present.
My birthday is on August 4th.
I am a full-time cancer patient, living a really full life.
I have been with my spouse for more than 16 years.
It was NOT love at first sight.
I must not have been wearing my glasses.
My sons are as different as two boys can be, except that they are both brilliant, beautiful and loving.
They also drive me crazy and I love them to distraction.
I love Scrabble, wine, dark chocolate, knitting and a really good book.
I love the way my dog smells.
I am completely bilingual in French and English.
I am happy.
This was more than 10 seconds.
Monday, July 23, 2007
T. will be with me until Friday when BlogHer begins!
I can't believe I am going.
I am a very lucky person.
Friday, July 20, 2007
I'll no more (I hope) when I next see my medical oncologist on August 15th. I do know that I will be continuing chemo (I am hoping, although no one has promised me anything, for this reduced schedule to continue) and that we are still assuming I have cancer.
Everything has changed yet nothing has changed. I have found myself asking, once again, "Is that all there is?"
I need to feel like I am moving forward. And, so I decided to re-commit myself to becoming as fit, strong and healthy as I possibly can.
Many things have changed in recent months, in terms of how I take care of myself. And I have a naturopath, a physiotherapist and a massage therapist who all advise me on ways to feel stronger and healthier (and I really do think that they have helped me enormously).
It can be a little overwhelming. I take more supplements (at different times of day) than you can shake a stick at, and have a list of foods (both proscribed and prescribed) several pages long. I have stretches and strengthening exercises (for lymphedema, my frozen shoulder and to develop some strength in my core).
And there is not one day that I have managed to get it all done.
And when I decided to re-commit myself, my track record on these matters actually got worse.
Clearly, a new approach was needed. I decided to implement changes gradually, on a weekly basis.
This week, I decided to ban salt (bad for lymphedema) and sugar (it's pretty much poison) from my diet. This wasn't so hard to do, since I don't count dark chocolate and both sucanat and maple syrup are permitted in small quantities (although I don't think the container of organic maple yogurt I ate counts as a small quantity). I also remembered all of my supplements almost every day.
I also promised myself to do the stretching exercises prescribed by my physiotherapist. I was somewhat succesful, in that I did more stretching than I have been doing (which is none). I did not meet my goal of stretching every day.
Next week, I commit to continuing the above and to eat seven servings of vegetables every day (I have not been doing to badly at this, but I suspect that this will be much more of a challenge when I am away from home). I will also implement the new, Pilates based exercise programme my physio has put together (we are starting slowly but this will be a major accomplishment to achieve while travelling.
Why am I telling you this? Because, as with the yarn diet, I need you to keep me honest.
I'll let you know how I do.
Thursday, July 19, 2007
can you guess what this is?
Wednesday, July 18, 2007
My nine year old son, ready for a playdate and sleepover at his friend's house, packed his own overnight gear (with some prompting from me, "Toothbrush? Underwear? Stuffed animals?"), stuck his helmet on his head, hopped on his bike and rode off.
"Bye! See you tomorrow!"
He was adamant that I not accompany him.
I told him to call when he got there.
I rushed into the house and called his friend, "S. is on his way. Make sure he phones me as soon as he arrives."
Five minutes later, he did (it was only six blocks, after all).
He was fine.
I, on the other hand, am a little traumatized.
Tuesday, July 17, 2007
I'm not sure if I am unsure about my future, waiting for the other shoe to drop or simply stressed that my sweetie's passport has not yet arrived in advance of our trip to Chicago.
Last night I felt stuck in a loop. I can't remember the dream I kept having but I kept waking up in a panic, calming myself down and then having the same dream again. I woke up exhausted.
I was too
It helped to knit in front of the television tonight (although please remind me never to watch Law and Order, SVU again, no matter how desperate I am); I find the process very soothing. My mitered squares are perfect and relaxing (each little square is a satisfying project unto itself. If I never get around to sewing, I'll have 120 beautiful pot holders).
And, now I am off to bed (much too late). I am hoping for a dreamless and uninterrupted sleep.
Monday, July 16, 2007
I love this pic, with my face and my son's in profile and our friend in the painting looking over our shoulders.
I also love how shaggy my hair looks. I have hair!
And new specs.
I love the relationship captured in this moment.
And I love how healthy I look.
a storied week end
"Play with me!"
The call came at 7:00 am on Saturday morning. I dragged myself out of bed (D.'s big brother was at a sleepover, so I couldn't bribe him to look after his younger sibling).
"What do you want to play?", I asked wearily.
"Uncle Wiggily," came the reply.
I groaned. This game, which consists of moving a plastic rabbit along a path (the pieces are moved along based on the number on a card drawn by the player. Each card also has a poem that D. insists we read. Every time) has been played many, many, many times of late.
I played dutifully, if somewhat grudgingly, and definitely groggily. D. asked about one of the characters on the board and I remembered that a booklet, lost long ago, with a story had come with the game.
I googled Uncle Wiggily and found a link to a trove of stories, courtesy of Project Gutenberg. There are thirty-one Uncle Wiggly stories (they were written by Howard R. Garis).
And we started to read, no video, not even any pictures, just the sound of my voice as we cuddled on the couch. At the end of each story (which is always a cliffhanger), D. would ask for another. We broke for breakfast, then read a few more.
We had an amazing morning, filled with stories written for children ninety-five years ago.
Saturdays are library days in my house. Usually, this is something that D. and I do but this past week end, my older son and his best friend decided to come along.
I left the older boys to peruse the graphic novels (and I have to share that an elderly gentleman went out of his way to let me know how polite they were) while I took D. to the children's section.
After we'd checked out our books, we sat at a picnic table outside the library, with the older boys on one side pouring over their haul, and D. and I with our backs to them on the other, reading a book about hockey. The dog lay contentedly at my feet.
It was a lovely tableau (and the looks on the faces of passersby confirmed this).
Third (and final) story:
Yesterday, my older son, S. and I went to see Harry Potter and the Order of the Phoenix (in IMAX and 3D!).
I honestly thought this was everything a movie should be. Fun, engrossing, beautiful. The time flew by. I looked over at one point (during the 3D part) and saw my nine year old son, reaching out to grab at an object on the screen. It really did feel that real.
We are very much looking forward to the publication of the final book, next week.
I have loved books and their stories for as long as I can remember. And I am so pleased and proud that my children (and my spouse) love reading as much as I do.
Wednesday, July 11, 2007
treated and home
My counts were just high enough today to go ahead.
As usual, the Demerol-Gravol cocktail made me very stoned very fast.
I think it is very amusing for anyone with me, including the oncology nurses.
I fell asleep during treatment, came home and slept for four and a half more hours.
I am still stoned, but happy that I do not need to go back until July 31st.
I will post a more substantial blog when my fingers more readily type the words my brain wants them to.
Tuesday, July 10, 2007
But now I'm feeling pretty run down and my throat is scratchy. I took the dog out for a walk and couldn't go for more than a few blocks. I am wiped out.
The power of suggestion or am I really run down?
I'll find out tomorrow when I go back to the cancer centre, get bloodwork done again, wait for results and then either go home or get treated.
I'm hoping I get treated, since the rest of the summer has been pretty much plotted out. The kids are in camp when they need to be, off when I will be feeling well and we have planned a couple of getaways (including the trip to Chicago).
I have plans, dammit.
I'll keep you posted.
Friday, July 06, 2007
you overwhelm me
After the initial rush of joy at learning my good news, I admit to being numb for the next twenty-four hours or so. I couldn't quite believe that the tumours could be gone. It was also really weird to be shocked by good news for a change.
But the shock has worn off and now I am positively giddy.
And it gets better. My wonderful friends have given me the most amazing birthday present. I was presented today with a cheque that will completely cover all of my BlogHer expenses (and then some). All of them (except for air travel, which, you may recall, was covered by points from my brother-in-law).
I knew that some money was coming (a couple of people had let this slip). I knew that my friends were making it possible for me to go to Chicago.
But I am completely and utterly overwhelmed by your generosity.
I don't have the words to express my gratitude. I am even a little embarrassed.
And very, very touched.
Planning for BlogHer has been very important. The mere act of making a commitment to attend something several months ahead of time felt like a defiance of cancer. I had to plan on being healthy and fit because I had committed to this trip. The very idea got me through some difficult days and nights.
I have the best friends in the world.
Wednesday, July 04, 2007
I learned the results from my CT scan today:
"There has been very substantial response to treatment. Widespread metastatic disease to the liver has regressed remarkably...Very significant response to chemotherapy...the remaining parenchymal nodules and evidence of scarring are difficult to evaluate for viable residual disease."
In other words, they could find no evidence of the cancer, just scars to show where the tumours once were.
The doctor who works with my oncologist said, as she passed me the report, "I want to frame this." She was beaming.
This doesn't mean I can quit chemo (or, especially, Herceptin) but it does mean that, at least over the summer, I will go less frequently (receiving treatment every three weeks).
There are very likely still cancer cells in my body but they appear to be impossible to locate, at the moment.
As my doctor said, "This is as good as it gets."
I am in shock, and completely elated. I keep re-reading my ct scan report and have yet to bring myself to tell anyone (my spouse knows, because he was with me). I was very optimistic that I would at least learn that my tumours were stable and was hoping for even better news. But this, honestly, is almost beyond my wildest dreams.
I have some thoughts on why my health has improved so much and how I do feel that there is a two-tiered health care system but I'll save that for another day.
Going to go pinch myself now.
Tuesday, July 03, 2007
off to the spa
Finally, D. started at the day care in his new school today (he starts JK in the fall). To say that he was eager and ready is an understatement. On the way over he made us practice our lines: "You say, 'Have a good day, son.'"
I think my children may watch too much television.
Monday, July 02, 2007
happy belated canada day
Outside of our nation's capital, Canada Day is a pretty laid back affair. Oh, there are fireworks, free concerts, parties and lots, and lots of backyard barbecues, but it all pales in comparison to the festivities in Ottawa.
My adopted home town is, generally speaking, a pretty staid place. But on Canada Day, the city pulls out all the stops. Tens of thousands descend on Parliament Hill (and dozens of satellite venues) to celebrate and thousands more take the partying to the streets (including the two young clean cut guys I saw casually strolling and sharing a doob, as I sat on my friends' front steps in the heart of downtown - across from a very busy park and mere blocks from the city's main cop shop). Everywhere you look, folks are decked out in red and white (I was wearing blue and grey but that's really all that was clean).
To be perfectly honest, I have always found it to be a little much. I think this comes in part from living so close to a university. Having drunken students littering the streets is one thing, but listening to shouted obscenities at four in the morning and the sound of tomatoes hitting my fence (yes, this has happened) is quite another (I shuddered with horror yesterday afternoon when I realized that the frat boys across the street were drinking from pails, then it occurred to me that twenty years ago, I might have been there, drinking with them, and just as oblivious to my neightbours. I was more alternative-crunchy-granola than frat friendly, but I don't think the more progressive epithets made one whit of difference to our long-suffering neighbours).
And the thing, is, I'm kind of uncomfortable with nationalism (this has been reinforced after 16 years of living with a secular Jew who majored in History at university). So many horrific things, around the world and here at home, have been done in the name of nationhood.
However, I am proud to be Canadian. While we have leagues to go until we match the values we purport to espouse (hello aboriginal poverty, residential schools, the Chinese Head Tax, and the incarceration of Japanese Canadians during WWII, to name just a few things for which we have to atone), this country is a pretty good place to live.
There are many things I appreciate about Canada, some intangible (or at least beyond my ability to articulate at this late hour. I'd start with the fact that we're funny and living next to the giant next door gives us a pretty good sense of perspective) and some more concrete (like good beer, great music, gay marriage and the extra letter we throw into a whole bunch of words). Chief among them, though, is our social safety net. It's somewhat tattered for sure, but it's existence is one of the things that defines us.
Life as a cancer patient has really brought this home for me. There have been glitches along the way for sure but generally speaking, the Canadian health care system has been very good to me.
And I am very grateful indeed that I have never had to chose between chemotherapy and feeding my children.
So this is what I wish for Canada, in it's 141st year - a renewal of our commitment to comprehensive health coverage for every Canadian, regardless of where she or he may live. Oh, and a national pharmacare programme (to ensure that prescription drugs are available to all who need them) is long overdue as well.
Happy birthday, Canada!
May the sangria (red like the flag) flow freely and the barbecues be hot for many years to come.
I had a very good time on your birthday this year.
Sunday, July 01, 2007
i need to be sexier
I was checking in at the Junky's Wife this morning and learned that if you follow this link, you can find out how your blog would be rated.
Apparently they didn't dig back far enough into the archives. What about 'boob'? Or this story, about exotic dancers? I guess this blog isn't very sexy. Or violent.
And why is 'pain' problematic?