This is it – this is the big project I have been “talking” about when I kept saying I had something in the works. I 100% feel this is one of my big to dos in this life – I believe God has tasked me with this – to help others and myself send love out into the world – one person at a time.
This idea has been in my head since the start of my diagnosis the first time. It has evolved through many stages, it has been pushed to the back burner and completely off the stove several times, but it just wouldn’t go away. My heart always held a piece of this idea no matter what I tried to do instead.

What is sending love? It is simple – it is a way for me, you, and everyone to write thoughts, feelings, kind word, and love for others down and send it to them.

From the ProjectSendingLove blog:

After both diagnosis’s, I received the most heartfelt cards from friends and family. These cards were filled with words of love, kindness, joy, hope and prayers. I honestly think this love helped carry me through cancer with flying colors!

Why do we wait to tell each other how much we love one and other, how important someone is to us and what an impact the person makes on our lives and the world until a tragedy strikes?

What if we all started sharing the love, kindness, joy and prayers that we think about others in our hearts all the time with those we are thinking about? How special and important would they feel? How could that love for each other change the world? I am not sure, but I have to see.

It is easy to get caught up in the idea of “how” do I tell others that I love them, respect them, that they are very import to me, to the world. But the how is the easiest part – open your heart and love. You can’t run out of it and the more you give, the more you have to give and the more you get. Crazy little thing God gave us – the ability to love.

Sending Love is such a simple idea and even simpler to do: write your love for others down on a postcard and send it.

“Be the change you want to see in the world” ~ Gandhi

I am tired of talking all this talk - now it is time for me to walk the walk.

May 2010 bring us all peace, joy and inspiration.

Yesterday was a chemo day, so I don't have much in the way of original thought to offer up to you.

It was more stressful and a longer day than most but made infinitely easier by the presence of my friend T. We had lots to talk about and she ably distracted me when I felt the stress levels rising (the guy beside me was, for much of the time, having a shouted conversation with the man across the "pod."). She even tucked me in very sweetly as I settled in for my post Demerol nap.

Between bloodwork and chemo, T. and I went out to lunch at The Green Door. Over our veggies, we got to talking about food. I've been seeing a nutritionist, who has made some initial adjustments to my diet (minimal sugar, no dairy, more raw food, a high quality protein with every meal or snack). Since I told the nutrionist that I drank no more than five drinks a week, I've also been trying to stick to that. What I need to figure out is what exactly constitutes a drink. Is a pint of beer one drink? Two? One and a half?

T. told me that her doctor has been telling all his patients to stick to the following formula: 0-2-9-14

0 - at least one night every week you have no booze at all.

2- no more than 2 drinks at any given time.

9- women should have no more than 9 drinks per week.

14 - the maximum for men.

That makes sense to me and doesn't seem too onerous. Of course, if one is hoping to lose weight, drinking less (or not at all!) makes sense. Empty calories, decreased willpower, increased appetite...there really are lots of sensible reasons to forego the booze. I do enjoy beer and wine, though and don't do well when I try to cut anything I like out completely.

What do you think?

 Last week, I spent several days in a cabin on a very quiet island in Northern Ontario. It was bliss.

We were also completely offline. No phone, no electricity, no internet. I didn't mind one bit but it did serve to underline how often I have come to rely on Mr. Google to provide information. Here are just a few of the questions that went unanswered:

What is the difference between NASCAR and Formula 1?

What is the weather forecast?

What is fracking?

How do I knit cables without making holes in my knitting?

Who bought the Body Shop?

Why does the carbon-monoxide detector keep going off?

What are the health benefits of okra?

What are the ingredients in sweet potato pie?

What dogs are in the high risk group for bloat?

Are coffee grounds good for the septic system?

Is there a specific person assigned to travel with the Stanley Cup?  (The internet has failed me on this one! One link said there are three Hall of Fame staff who travel with the Cup but when I clicked through to the the article itself, the info was not included).

Among the many sentiments that can make me apopletic, the idea that if only women with breast cancer "stay positive", they will be just fine might just get to me the most.

I was pretty damn positive during my initial treatment for breast cancer and yet here I am. I remained postive through my five years of remission (and ongoing treatment) and I was relatively upbeat during my brain surgery, almost a year ago.

I think it's a good idea, generally, not to wallow in my sorrows because it's so much harder to live that way - but I don't think the positive live and the negative die. Not for a moment.

It's natural that we want to believe that survival after breast cancer is within our control and some things certainly are. But not everything. And I think that's why those of us living with breast cancer can make "survivors" feel kind of uncomfortable. We're they're worst nightmare.

There is a real temptation for news outlets and others wanting to highlight the positive during breast cancer awareness month (and at other times) by ignoring women with metastatic breast cancer completely.

katherine O'Brien  (of I Hate Breast Cancer) wrote to a local television station after just such an episode. Please take 5 minutes to watch. Your jaw will drop, I promise.

Click here to watch Breast Cancer Awareness. Stay Positive 2.0

I'm positive that I take great comfort and inspiration from women like katherine and others living with metastatic breast cancer who are not afraid to speak out.

It's the very last day of "breast cancer awareness" month and I have a post up at Mom 2.0 Summit, "Pinkwashing won't cure breast cancer":

"I care about bringing an end to breast cancer. As someone who has lived with the illness since first being diagnosed in 2006, I care very much. However, I don’t think buying fried chicken in a pink bucket or a pink screwdriver is going to change very much at all."

I also wrote a post for BlogHer for Metastatic Breast CancerAwareness Day, "I'm sick of cancer but it won't be a good day when my treatment stops":

“Women with metastatic breast cancer never really fit in with others in the breast cancer community. To those who finish treatment, embrace the word “survivor," talk about “winning their battle" and never looking back, we represent the worst that can happen. Who wouldn't want to believe that if you stay strong through treatment, stay positive and do everything right, you will get to leave cancer behind?”

I hate pink ribbons and pinktober for a whole host of reasons that I realize I can now rattle off in a two minute rant. Ask me some time. It could be my new party trick.

Is all around. Now, I didn’t come up with that line myself, I just watched one of my favorite movies – Love Actually. And it is true, love actually is all around. I was at the post office the other day – BLAH, and a woman walked up to me, and asked if she could ask me a personal question. Before cancer, I didn’t open up to many people, but I have learned through this, why the hell not. It isn’t going to hurt me any to open up and it might actually help someone if I do.
I smiled and said yes. She asked if I was going through chemo and when I said yes, she gave me a cute scarf she made. She told me a little of her story – when she was going through chemo, her sister made her lots of these scarves, she just had her reconstructive surgery and just the day before had her nipples tattooed on. That might shock a lot of people, but when a person gets a mastectomy, EVERYTHING is gone – no breast tissue can be left. So in order for some woman to feel whole/normal again, they choose the tattoo route.
She asked me where I was at in my treatment, asked me if I was able to eat and told me not to worry about all the little shit in life because it just isn’t worth it. Well, how awesome was that for a total stranger to share so much of herself with me because she noticed I didn’t have hair and she took it upon herself to take a chance and come ask me something very personal.
Opening up is scary stuff. I think it is most scary to open up to myself, then to share it with others. Once you say it out loud, or in my case lately – type it out, it is real. Every thought has meaning and emotion behind and it is nothing to be embarrassed about it. This is one of the meaning life lessons I am not sure if I would have learned without Bill invading my life and you know what, this is just another reason I am thankful for Bill. Now don’t get me wrong, I am ready for that bastard to die, but I am glad he was here for a bit.

Today is a pretty emotional day for my little family.

Tomorrow, my youngest, will start Grade One at a new school. While that's a pretty big deal in and of itself (at least it's the same school his big brother attends), this also marks his last day at the day care housed in his old school.

My family has been involved (except for a few years between kids and when D. was in home care), with the Glebe Parents' Day Care since 1999, when S. was a toddler. It's a great day care but the staff at their First Avenue program are truly exceptional.

When S. was "emergency airlifted" out of First Avenue in Grade One, they re-opened the day care an hour early so that staff could meet him at the bus (his temporary school was further away and the school day ended earlier) for the rest of the term (from February until June).

And, earlier this year, when I needed a space to launch my book, the staff offered their wonderful facility free of charge. They decorated it so beautifully and there was even a message on a chalkboard in the washroom telling me how proud they were of me.

And those are just a couple of examples.

This past week end, D. and I made a poster-sized card with a photo of our family. We all signed it. We also made cookies (I burned the first two batches, my spouse did the baking of the last couple, as I was becoming hysterical). We also gave them a bottle of gourmet chocolate sauce to pour in their coffee.

D. and I made cards for the three teachers who hosted the book launch. I want to make scarves for all three of them but of course, only one was finished. D. had me paste photos of the scarves in the cards for the other two, so that they would know what they are getting (I made a "Lace Ribbon" scarf for J., T. is getting a "Clapotis" and, if I can manage the pattern, I want to make "Juno" for A.)

I had T. and D. deliver it all to the day care, confessing to my spouse that I am "emotional coward." Apparently, the staff and T. have decided that I am not to be let off the hook, though, so S. and I will join T. when he goes to collect D. at the day care this evening.

There might be tears.

These photos were taken first thing this am and are thus not particularly flattering. I just wanted a photographic record.

To distract myself this, I thought I'd do this nifty little book meme that Sassymonkey wrote about at BlogHer:

"Using only books you have read this year (2009), answer these
questions. Try not to repeat a book title. It’s a lot harder than you
think!

Here's the meme with my answers. If you haven't read enough books so far this year to answer all the questions go back as far as you need to get enough books. If you've played it on your blog leave a link so I can go visit."

I was planning to do it even before I noticed that Sassymonkey had used my book to answer one of the questions but that particularly tickled me.

Describe yourself: Dragonslayer (Bone #4, Jeff Smith)

How do you feel: What It Is (Lynda Barry)

Describe where you currently live: Three Day Road (Joseph Boyden)

If you could go anywhere, where would you go? Toronto Noir (Janine Armin and Nathaniel G. Moore, eds.)

Your favorite form of transportation: Walk Through Darkness(David Anthony Durham)

Your best friend is: Tipping The Velvet (Sarah Waters)

You and your friends are: Casting Spells (Barbara Bretton)

What’s the weather like: All the Colours Of Darkness (Peter Robinson)

You fear: The Price Of Darkness (Graham Hurley)

What is the best advice you have to give: Nobody Move (Denis Johnson)

Thought for the day: Don't Look Twice (Andrew Gross)

How I would like to die: A Good Death (Elizabeth Ironside)

My soul’s present condition: Hurry Down Sunshine (Michael Greenberg)

I seem to have read a lot of books with darkness in the title.

Hi everyone, this is Eric writing for Renee.

There’s been a lot of people asking how Renee is, and we thought that updating this blog is probably the best way to get the information out there.

Renee has been having a lot of up and downs lately, but the constant has been a very heavy fatigue and headaches.  She can’t really focus very long, and staring at a computer screen to type really hurts her head.  She sends her regrets on not being able to talk, write or be around for everyone, but appreciates all the well wishes, thoughts and prayers.

The past week or two we have been very worried that there was more tumor growth due to all the issues she was having.  But then she had a MRI on Friday Dec 27^th, and then we met with the Neuro-Oncologist on Monday the 30^th.

Prayers were answered, and the latest MRI shows that the swelling is coming down, and there’s nothing that indicates an active tumor.  The most likely thing is necrosis from the surgeries and the multiple radiation treatments to the same area.  It seems strange to us that it would show up as symptoms so long after the actual treatments, but we will take necrosis over tumor any day.

That being said, it still doesn’t explain why Renee is feeling so bad still, or how to give her any relief.  The only thing that seems to help her for now is lots of rest while her body heals.

The current plan is that since the swelling seems to be going down, she’s on a taper to get off the steroids, which hopefully will help with some of the fatigue.

Renee had a PET scan planned for before Christmas, but the machine broke a half hour before she was scheduled.  So, now she has a PET scan over her whole body on Thursday to make sure she’s still clean everywhere else, and then we’ll meet with her regular Oncologist on Friday.

Assuming that her PET is clear, and that she’s not improved from being off the steroids, there’s still the possibility of being on Avastin to help with the inflammation in her brain.   It would be a IV drip for her, but no side effects that would make her feel worse than she does.

In the meantime, she’s still on her oral chemo, as well as pain & nausea meds to keep everything in check.  Her spirits are up and down, but with the MRI news we’re all a lot more hopeful about turning a corner soon.  More than anything, she’s just tired of feeling tired & hurting, and ready to get back to feeling like herself.

We’ll update things here as we get more information, and thank everyone again for the thoughts and prayers.

We wish everyone a happy new year and may 2014 find you and yours with an abundance of Joy and Love throughout the year.

I feel like I am and forever will be searching for a way to explain to others that while yes, I am technically cancer free right now, my energy and mind is not like it once was….and I don’t know if it will ever be.

Energy:
When I have it, I have it!
When I don’t, I don’t.

I can no longer make myself trudge through activities like I once was able to do.

I have to carefully schedule my day so I don’t crash and burn too soon.

I am like a child who gets over tired and melts down.  I can’t make sense of all the emotions that bombard me and I melt down…just like a child.

I don’t remember what it feels like to not be tired all the time…to not know that if I laid my head down on a soft pillow, I would more than likely fall asleep…and sleep for at least an hour.

I don’t remember what it feels like to have a headache and just think, oh I have a headache.

My mind:
I don’t remember what it feels like to not worry about my friends.  Of course I have always worried about their happiness, but this is a different layer of worry with my “cancer” friends.

I don’t remember what it feels like to be able to talk about what is going on with me without crying.  The first few times through Cancerland, I could talk about it like a fact – it was what it was.  Now, 6 years later it has become a part of me. 

I don’t remember anything.
Seriously…anything.
My short term memory is 95% gone. 

You can look at me and have a full out conversation and a few minutes later, I won’t remember it.

I make plans with others, and I will have no recollection of it.

My goal for 2015 is to make peace with myself and all that has happened.

To truly know it is ok if I don’t remember a lot of what happened – there is probably a GREAT reason it is blocked.

To truly trust in the healing process and be happy and great with where I am verses where I think I should be.

To truly commit a fewthings and DO them.

Not worry about the ifs of getting sick again and just flipping go for 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.

I teamed up with an old friend who sews super cute stuff to do a week's worth of blog give a ways - be sure to check it out and sign up to win!!

http://leopardsandlilies.typepad.com/where-sweet-meets-sassy/2011/01/valentines-advent-tree-give-a-ways-too-much-fun.html

All around me, I see people doing so much more than I am able to.

More work
More working out
More volunteering
More cooking
More cleaning
The list could go on forever.

It is hard for me not to beat myself up about this, tell myself that I should be able to do more, I should be able to volunteer more, make videos more, create more artwork, more, more, more.

But I can't.

I just can't if I want to be the person I want to be so much.

I have to realize I am doing all I can, all I need to do and I am doing enough.

I am enough.

https://www.youtube.com/watch?v=sU5mmCHfkaA

March, 2011

Loving What Is -

After visiting with my pastor a few weeks ago he recommended I read a book called “Loving What Is” by Byron Katie.  http://www.thework.com/index.php

It is a very interesting book and has really solidified my belief in my thought of, it is what it is.
She says in the book there are three types of business: your own business, someone else’s business or God’s business.

When you are in someone else’s business you cannot be totally whole and present in your own business. Example: you are all up in a friend’s business in what your friend shouldn’t have done in some situation – none of your business. You can’t be present in your own business if you are raped up in someone else’s business.

I am looking at my health as God’s business.
It is His to take control of, it His to do with what He needs to do, it is His – not mine.

One of my best friends told me today at the gym that she is doesn’t understand how I am handling this so well.

In my mind, there is nothing for me to handle.
Yes it sucks big time that I will be in chemo for maybe 10 months or maybe 10 years.
At this point I don’t know.
But I do know that no amount of worry, no amount of “what if” scenarios played out in my mind, no amount of anything but putting one foot in front of the other will help me right now.
Now, don’t get me wrong.

I have major breakdowns, I get pissed, I really want to beat up a fax machine with a baseball bat and listen to “Damn it feels good to be gangster” (little Office reference if you didn’t get it).

I do give myself a few minutes daily. Not a few hours, not a few days only a few minutes of my pissed pity party and then I have to gather myself again and move on.

I had one of those today when I was trying to decide what day I should have chemo. I just needed to know what days after chemo I would feel my worst, and no one could seem to tell me. I was mad.

Someone just tell me something so I can know what to do.

After talking to a great friend who also works at Tx oncology I got my answer . She asked the pharmacist and according to him 90% of people just feel really worn down but not down and out like I was last time.

Eric did a little more research and I am thinking I will feel like I have a cold. No one day seems to be worse than another. That is what I needed to know. I just needed some facts.
If all goes as planned my first chemo day will be this Friday at 10 a.m.
“Life is full of ups and downs. The trick is to enjoy the ups and have courage during the downs.” ~ Anonymous

LifeMark Physiotherapists Help Participants Stretch Their Way to Conquer Cancer

Paula Portnoi & Warren Nicholls, Registered Physiotherapists at LifeMark, provided massage and physio services
at BC Cancer Foundation event

On March 8, 2014 Workout to Conquer Cancer raised $379,000 to power cancer research in BC. The full-day of workout sessions that took place at Richmond Olympic Oval included Zumba, Afro-Brazilian Dance, Fusion Kickboxing, Rock Your Core-Barre Fitness, and Retro Aerobics. On hand to treat participants with massage and physio services were two dedicated volunteers from LifeMark-Centric Health, Paula Portnoi and Warren Nicholls, both Registered Physiotherapists at the LifeMark Chinatown Clinic.

“I thought it was a great event,” said Warren Nicholls. “It was well run and it was awesome to see so many people getting fit while raising money for a good cause.” The momentous occasion to accelerate cancer research for the BC Cancer Foundation raised $379,000 to support BC based, world-leading research at the BC Cancer Agency.

Workout to Conquer Cancer stated that Douglas Nelson, President and CEO of the BC Cancer Foundation, took a moment between Workout sessions to give thanks to participants for providing new hope to the more than 24,000 British Columbians who will be diagnosed with cancer this year. “Cause, community and camaraderie have all come together to affect widespread change, giving cancer patients and their families the courage to hope and oncologists the confidence to say cure,” he said.

Paula Portnoi & Warren Nicholls, Registered Physiotherapists at LifeMark, at the Richmond Oval event

The day ended on an inspirational high, as hundreds of British Columbians celebrated the tremendous impact of the funds raised on the future of cancer care and making a difference in the lives of those diagnosed with cancer in the province.

Please contact one of our 48 Cancer Rehab locations across Canada. Links will direct to a Cancer Rehab provider in your area.

British Columbia
Saskatchewan
Ontario
Nova Scotia

Find out more about Cancer Rehab!

A heart can break

and a heart can heal –

will heal.

Though

the healing process

puts the heart back together

The heart

can never be put back together

exactly the way it was

before

it broke



Some pieces

might be left out

Some pieces will be

arranged differently

Some new pieces will be added



A heart can break

A heart can heal –

No matter what

a healed heart

changes people


This is another one I wrote sometime last year – I am guessing. I know you might wonder how I have NO idea when I actually wrote these but I put them all on one page and saved it like that.


I do remember writing this one though. I had just been put on my anti-depressant after treatment and was starting to feel “normal” again but I noticed that me, my normal, my everything was different. Not a bad different – just different from before…but why wouldn’t I be different – I grew, I healed, I conquered. I can’t wait to see how this broken heart heals.

I have been reading this book for almost 2 years...on and off.
It speaks to me different daily and I just want to share these with you.

http://www.amazon.com/Year-Experiencing-Gods-Presence-Devotional/dp/1414339550/ref=sr_1_3?ie=UTF8&qid=1370001313&sr=8-3&keywords=chris+tiegreen

I SO feel like it a duty of mine to share this...

 

They raised their voices and praised the Lord with these words: “He is good! His faithful love endures forever!”

Quoted from “The One Year Experiencing God’s Presence”devotional book:

"The people raised their voices in praise, proclaiming God’s goodness and faithfulness and love.

God Responded to the worship of people hungry to encounter Him in His dwelling place.

God doesn’t just show up simply because our rituals or behaviors, even when those rituals and behaviors are good. He shows up in response to a heart attitudes, especially those that are expressed. Just as we are drawn to love, so is God. He comes close to those who love Him, hunger for Him, and say so.'

How I plan to live this today:

I am raising my voice to You sweet Lord – for all to hear – I love You…simple as that – I love you.


I think we want to make it harder than it is to love - love God, love ourselves, love each other...but it isn't.
We want to believe there are rules to follow - there aren't...just ask God to fill your heart.

"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).

I was going to post about Blog Out Loud Ottawa (#boloottawa) but that's going to have to wait because I want to tell you all about something that's happening tomorrow.

The text reads:

"The Honourable Dr. Hedy Fry, Member of Parliament for Vancouver Centre and Federal Liberal  Health Critic, will be joined by the Canadian Breast Cancer Network to discuss the tabling of her Private Member’s Bill calling for a National Metastatic Breast Cancer Day on October 13th of each year. The Canadian Breast Cancer Network will be represented by Ms. Niya Chari, Government Relations Manager. Ms. Laurie Kingston will represent the Metastatic Breast Cancer community."

I paused for a moment at the description of my role at the table but then realized how very accurate it is. As much as I wish I didn't have metastatic breast cancer, I am very proud to consider myself part of the MBC community. I'm among some very good, smart, organized, supportive, strong advocates for change.

Metastatic Breast Cancer Awareness Day has already been designated by the US Congress and Senate. A Canadian MBC Awareness Day won't effect change on its own but it's a step in the right direction.

I guess it is time I write this. I was thinking if I didn’t write it or talk about it that it would somehow not be true and go away – I am pretty sure that is not actually the case.
Yesterday was a really, really hard day.

Here are the facts – I am not sure how so much got lost in translation from the CT report in May to now – I think we were all on such a high from the great response, Eric and I didn’t ask enough questions. The spot that was a huge cluster on the front of my lungs was the spot that was left after the CT scan – I was under the impression that whole thing was gone – not so much. That is the spot that has grown since the May CT scan – we can’t just have it removed surgically because it is all twisted up in blood vessels and what not. There is a new spot but too small to show actual uptake. The spot on my left shoulder is still there – hasn’t gotten bigger or smaller and there is still some on my right rib.

I am so grateful that we knew about most of this on Monday otherwise yesterday would have been a complete mess – we had time to digest the news and get our questions together before actually talking to her.

So I started on a new chemo cocktail yesterday: carboplatin and gemcitabine. We are also trying to get me into a trail for Iniparib - I should know about this next week. These 2 chemos are more intense than what I was on with more potential for side effects. However, with this combo and the parp inhib (trial stuff) they have had great response.

I am going to start asking y’all for specific prayers – I have heard people having true miracles happen from this.

My prayer for this week is: to get into the trial and not feel side-effects.

Eric and I allowed ourselves to have our pity party last night and get it all out on the table, but today we woke up fresh and ready to take it on. We are well aware I more than likely will be in chemo for quite some time, but peace has been made with that fact. I was questioning how long I can go on like this, but after today doing what we do, I know I can do this forever – I might just need to sleep more than normal people.

I am also on the fence of doing a raw/vegan diet. We have pretty much been there on the vegan stuff except a few items and well with my vitamix, I can easily do raw. We also had the best gazpacho yesterday and I could easily eat that every day. I don’t know…I just don’t know. Of course I want to do all I can do but at what point am I going to drive myself crazy reading stuff that might or might not work for me?

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.

Eric told me about this article he read called The SpoonTheory written by Christine Miserandino.  She has lupus and she writes a blog called But You Don't Look Sick.

The title of the blog really hit home with me. I know many other stage IV women, who when you first look at them you would never think they have stage IV cancer...heck before this whole brain mess, I was one of those while I was on the parp.  I now feel like I look sick...with my foot issue and the big scar and bald spot on the back of my head...you know - it is the little things. 

It really hit home with me because I have been having a hard time lately with my lack of energy and I always feel on the defense with others when I say I can’t do something. I mean, I look like I should feel fine, I look so much better than I did even a few a weeks ago, I am able to walk without a cane, so I should be back up and running…right??

I am nowhere near full speed…h*ll, I am not even near 25% of full speed most days.

Everything takes so much energy...takes a spoon or two or three from my pile.  I try to plan my days to have enough spoons left to share some with Ian and Eric…some days it works, some days it doesn’t.  And the hardest part is that I never know what the day will be like until the moment. Some days I wake feeling great and then crash, other days I feel good all day, still others I wake up tired, my foot is heavy and it is hard to move.

I am trying to be ok with this.  Some days I am ok with it, some days I’m not…I want more…more energy, more ability to walk, more feeling in my foot…all the things I pray for.

I pray for patience, for health, for grace, hope and so much more.

Please feel free to pray with me.  I have really found that when I ask for specific prayers from y’all, God works in even more amazing ways. Please pray for complete feeling to return to my right foot, to stay cancer free in my whole body today, tomorrow and always and love to always pour out of me.

I'm still feeling crappy, so I thought I would share something that really makes me smile.

I met Claudia at the 2009 Conference for Young Women Affected By Breast Cancer. Every time I saw her, she was wearing a very different and very funky hat.

This one, made from coffee filters was one of my favourites:




When Claudia was diagnosed with breast cancer, she launched the She Arts Project: "a collaboration with 30+ Artists with photographs from Meg Luther Lindholm."

The photographs eventually became part of an travelling exhibit. You can see more of them here.

I love this kind of thing.

My big boy:
Seriously, I realize I am a total sap but come on – how can my baby boy be such a big boy now? He changes and grows a little more everyday and I thank God for how happy and healthy he is, but can’t I slow it down?
We went to meet his new teacher for MDO today, tried to use the big boy potty at Kenny’s coffee and he wore big boy undies all day with no accident! He really is becoming a big boy.

My to-do list:
Is long but really, would I have it any other way? I don’t think so. On it right now is: planning and getting volunteers for Shop, Sip & Share, getting my lunch time card classes going (have 3 booked already!), getting my etsy shop opened by Oct 15th so I can do Christmas stuff and still working on the never budging 20 pounds (I would REALLY like to tell myself since my oncologist said it is fine and since my estrogen isn’t normal that I am good with it lingering around – but I am not!) My goal is to lose it by our cruise in February, 2011 – come on I should be able to do that – right?!?!

We bought an awesome round teak table off craigslist and now I am itching to get to resale stores to find 6 different/funky chairs for it – AH, I can’t wait for the dining room to come together and be done!

Eric is planning on taking Ian on a daddy & child camping trip in October. I think this is great for them and think it is even better that I wasn’t invited! Me + camping doesn’t equal any fun unless I can drink and that just doesn’t go over well when I have to wake up early and take care of a 3 yr old!

I can’t say I am one who remembers or even really talk about any of my “cancerversaries” (notice I say ies…as in too many to remember).

But today is one I couldn’t let slip by without talking about.

One year ago today, right about this time, I was being told I had a large mass in my brain.

Large as in more than 5 cm.

That yes, my cancer had once again decided to try to move to a residence in my body.

That yes I would need brain surgery.

That yes the family was coming to Austin to be here with us.

That yes once again, our sweet family was going to be rocked in ways we never knew were possible.

In one short year, I have had 3 brain surgeries, 2 brain radiations, countless doses of chemo, changed chemo drugs, been on steroids too many times and I am sure there is stuff I am forgetting – you know, the 3 brain surgeries and all.

This year tore layers off of me I didn’t know were there to be torn.

There were days I was pretty sure I would never really be cancer free.

There were days I didn’t want to try anymore.  I didn’t want to try to live this new life that had been thrown at me with no one asking me if I was ok with it – I was ready to throw in towel one way or another.

This past year has hands down been the hardest year of my life.

But I don’t want to live my life around my cancer calendar.  We have also traveled, moved into a new house, watched Ian graduate Pre-K,  walk him to and from kinder daily, be with friends and family and just enjoy life.

Some days I get all worked up about some small something – I am not eating enough veggies, the kitchen is still a mess from this morning (right now actually), I can only do one “major” activity a day without being beat down tired, I am looking into the guest room that is still piled high with moving boxes, but then I snap out of it and remember who cares – at least I don’t have another brain tumor!

I rarely read the Life section of The Globe and Mail. In the mornings, I tend to skim the front section over breakfast and then get the rest of my news from the radio and online. However, today, as I was waiting for something on the stove, I grabbed the Life section and found several articles to be of interest.

I didn't know about modern Superheroes, who don costumes to patrol the streets or do good works. These guys are proud of who they are and they think they're pretty cool, too. "I'm not a fat kid in someone's basement or some geek living out a fantasy," says a caped crusader based in Vancouver, who calls himself 'Thanatos'. Dunno. Seems a little odd to me.

I am now worried about the fact Bhisphenol A can be absorbed through cash register receipts and water pipes as well as through food.

I have seen evidence of knitted graffiti in my own city but had no idea it had become a world wide phenomenon until my Danish friend M. sent me a link to an article about "craftivists" in Copenhagen. Now I can't help wondering, if it's in the Life Section of the Globe, is it still subversive?

I learned that men undergoing vasectomies can sometimes see a puff of smoke coming from their groin area during the procedure. What would make that happen?

I was reminded that yoga will enhance my cardio performance and that exercise can help stave off diabetes and heart disease. What I didn't know that short, intense burst can be especially beneficial. Now that got my wheels turning.

And I was moved to tears as I read how one woman lost her precious son to suicide at the age of 17. My spouse and I have both struggled with depression at various points in our lives, as have family members. I do worry about my boys. I want to protect them from everything. Hopefully, love, patience and all the right kinds of support (along with a generous dose of luck) will lead them to live happy and healthy lives.

What did you learn in the news today?

When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.

Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts  out." 

I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).

And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.

Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.

Next up: Blogging Out Loud Ottawa. Every year, I've found a reason not to go. This year I'm going to be there (hold me to that, would you?). There will be people I know and like. It will be fun. All I have to do is get myself through the door.

A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:

Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.

Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need "a prosthesis relocation program."

Imstell jumped in with the following:

"Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:

FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.

WANTED swimming prosthesis. Any size large enough to hide my belly.

These had me laughing out loud but I think we might actually get something like this going.

Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.

Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.

We are off to the maritimes tomorrow (if all goes well-it's a two-day drive with two kids and two dogs). I may be offline until August 12. I feel the withdrawal pangs starting already.

Chemo Chronicle 3.3

It was a hard day.

I admit it, I don’t do well with change….AT ALL!

I like to know what is going to happen, where I am going, what it looks like, etc.

Yes, Ian is just like me in regards to this. I felt a little like a lost 4 year old Friday when we walked into the office in Round Rock.

My doctor moved offices to a new location and today was the first day there. I am still not sure about it all as with most new things.

It is a lot smaller but it is oddly too small.  I know, weird.

The infusion room is a lot louder due to the smaller size and it doesn’t seem things here are as streamlined as they were at the old office. Eric keeps telling me that this is just as new to them as it is to me ,which is true. They had to hire a whole slew of people to come over to this office since they just made it bigger.

That was just the start of the hard day. With my new infusion of BSI (trial drug) it adds another hour onto the infusion. So now a normal Friday infusion will be at least 3.5 hours and when I have to get Zometa (bone stuff) it will be around 4.5 – 5 hrs.

We checked in at 8:15 to see my doctor and didn’t leave until 2:00 and it wasn’t even a Zometa day.

The whole time I was sitting in the infusion chair all I could think about was how in the world are we going to make this work with Ian’s school?

His school will be from 9:30 – 2:30. There is no way I can drop him off and pick him up on Fridays. Yes Eric can do one/both of them, but how long is his work going to be cool with him practically not coming in on Fridays?

How long can he run around ragged like this?

Yes these are the things that run loops through my head on a daily basis.

I am not worried about me.

I am worried about Eric and Ian.

 

_________________________________________________________

Please know this was written back in 2011.

I am still writing away for the book and getting it together. 

From a friend who is a social media monster, she suggested I start doing videos too and read some of my poetry writings that I think sound better being read verses you reading.

Please let me know what you think.

A non-virtual connection with Melissa from Stirrup Queens (and author of "Navigating the Land of If"). We are both holding Nora's head on a stick.

1. If Twitter was played a role at last year's BlogHer conference, this year it was front and centre.
Many of us followed what was happening in other sessions we attended by following the keyword (called a hashtag with a #sign) blogher#09. These are my tweets from the session I attended about "Online Safety for Your Kids Who Are Online Themselves" (I had expressed in my previous post the concern that it would be all about scaremongering but was delighted to find that it was not):

"if you are an engaged parent you have less to worry about in terms of sexual predation online" #blogher09 session on online kids.

it never occurred to me to worry about kids taking pics at my son's sleepover b-day party. should i have? #blogher09 kids online session.

"every technology brings with it new fears." the take away - don't panic! i love it. panel on kids online #blogher09 do you post photos of your kids online? on facebook? flickr? #blogher09

"identifying information that your kids put online has NO correlation with sexual predation." #blogher09

"reputation management" never heard this before in online context. interesting. #blogher09. your photos and words may come back on you, kids

"we are tethering our kids" "we are raising our kids in captivity" - this is the way times have changed. #blogher09.

2. In the closing keynote, the subject came around again, to Twitter. One commenter likened her Twitter community to a support group "I think the women I've met online in the pregnancy loss community have saved my life" (I didn't get her name or blog. Let me know if you did). A powerful statement, but I can relate. She went on to say that support groups are not available 24/7 the way that an online community can be.

3. One of the speakers also observed that most people get started blogging because of someone they know in their "physical life." I thought that was interesting, because it was my spouse (a non-blogger) who introduced me to the blogosphere.

4. Another favourite keynote comment (again, if you know who said this, do let me know): "People with higher levels of income tend to be online. We need to be vigilant that our online communities are not recreating or reinforcing existing inequities."

5. As you can see, I found the content to be very rich and thought provoking this year, despite the size of the conference.

6. I do worry that some people spent so much time tweeting that they missed connections with real people or taking in the discussions occurring around them.

7. One of my favourite Twitter moments occurred when "phdinparenting" lamented her dislike for American beer. She posted about our interaction on BlogHer. It really tickled me that I could be of help. There were lots of those kinds of tweets, throughout the conference.

8. I wish the bookstore had been in a different location. One person suggested in a conference feedback thread that the bookstore would do better closer to registration. I suggested that book signings take place during cocktail parties, in the middle of the action (and of course it wouldn't hurt if free cocktails made people want to buy more books). The conference organizers have acknowledged that the placement of the bookstore in the far corner of the Expo hall was a mistake (too far out of the way. And who wants to buy a book when they are surrounded by mounds of free stuff?). While I do understand how experiments can fail (and how it must have seemed like a good idea during planning) I just wish that this particular year (when I schlepped a bunch of books in my suitcase) had not been the one where the bookstore flopped.

9. Elisa from BlogHer made an observation (in a tweet, of course), that she is trying to learn the distinction between things that are "wrong" and things that are just not her "cuppa tea." That's how I feel about the karaoke during the Friday night cocktail party. I hated it. However, others seemed to be having fun (perhaps I am just getting old), so I got myself a hot date and went to find a patio.



10. I have other thoughts but Sassymonkey and Blondie expressed them already. Go read their posts.

I said many times before going that BlogHer09 would be my last. I hadn't even unpacked my suitcase before I'd begun to fantasize about getting to BlogHer10 in NYC. Anyone want to drive down from Ottawa and share a hotel room with me?