She makes an excellent, if somewhat smelly pillow.

It's a good thing she's cute.

This is her Hallowe'en costume. It suits her.

She jumps up on visitors and gets into the garbage at least once a week. She ignores most commands, unless she feels like listening and she steals food off the table (one time a fresh baked lemon meringue pie), the moment you turn your back. She'd run into traffic, if she thought there were something interesting on the other side of the street. She hates to get her feet wet but will roll in the mud. She disappears the instant I have a brush in my hand.

But she comes when called (most of the time) and materializes from out of nowhere when I put on my shoes for a walk. She loves me exuberantly and unconditionally. To her, I will always be The Best and Most Important, even when I have lost confidence in myself. She is happy almost every moment of every day and she gets me out the door when I'm feeling unmotivated.

She has the sweetest temperament of any living being and I have watched a child pull her out of a hiding place by her tail, without a whimper or a growl. She'll sit in a lap like a toddler and will fall asleep in my arms, with her head on my shoulder. I call her my Hairy Little Girl and whole host of names too embarrassing to repeat in this space.

She's a balm on my bruised spirit and an undemanding, forgiving companion. She makes me smile and even laugh on the days my heart hurts the most. She reminds me to be happy, to let go of the little things and how much fun it is just to be alive.

She's formally called Amaia Fiesta Lucy Diamond. She's a very good bad dog.

Because this is going to be one heck of a ride. Today was surreal and I don’t really know if I have processed all this. I feel numb, pissed and scared sh*tless – I really didn’t ever want to feel pissed but I do right now. I am pissed because my plan of not needing chemo and getting a double mastectomy and getting good new boobs didn’t work out so well – and I really don’t like when my brilliant plans don’t work out in reality how I have them in my mind.

I am scared out of my mind because, hello, I have NO IDEA what chemo is going to do to me. I have list of what it can do, what medicine I can take but there are some things I can’t take medicine for – tiredness, taste buds changing, and hair loss. Now, I know I currently look cute with short hair, but am I going to look cute with NO hair? Will Ian look at me differently? Will Eric still think I am his beautiful wife? Will I stick out like a sore thumb no matter where I go? I just don’t know. I do know though that there are some cute hats out there, so I will need to go hat shopping soon – that is something I have never said before.

I am scared of the tiredness. I already feel bad for everything that I know Eric is going to have to take care of. I HATE not being able to pull my own weight and help him out and hate even more that I won’t be able to be the great mom to Ian I love being. As my Dr. has told me twice now, I need to go ahead and get it in my head that I will not be winning any mother, wife, employee, friend of the year award.

The taste bud changing bit doesn’t really bother me. I have always said if there was ever a time when I couldn’t taste, I would eat chicken, rice and beans – hey, I might be able to lose these 10 pounds I have been trying to lose forever.

So, here it is – my pickings out of the big black boxes. I am what they call triple negative. I am ER -, PR- and HER2-. What that means is, this isn’t caused by estrogen, progesterone or HER (still not REAL sure what that means). This is a type of cancer that has been getting a lot of press lately due to them defining it by a lack of positive results. With the lack of any positive, they aren’t real sure why the cancer occurs – the best guest is one little stubborn cell got the wrong message and starting duplicating itself like it was someone import and now has caused havoc within my body. The good news to this is it can be treated with a variety of chemo cocktails – whereas if it was ER+ or PR+ there are only a few cocktails to treat with.

I also found out, I am stage 1 (good news) and grade 3 (a faster growing tumor – I don’t want to call it aggressive). With it being grade 3 is in a way a good thing – being as the cells are multiplying quickly, the chemo usually works really well on this type of cancer.

After we found all this out, we were sitting at the “chemo scheduler’s desk” and she asked, so when do you want start. Well hell, is there ever a good day to start chemo?? I picked Friday, yes this Friday to start. However, I am going to call tomorrow to see if I can move my date around depending on when I am going to feel the worst after each treatment. If I can move my day from being on every Friday, I will go ahead and start on this Friday, if not, I will start Monday. The reason I need to know this is because Dr. H said patients normally feel the worst 7 days after the chemo, so I don’t want to feel worst every other weekend. I would rather feel the worst during the week, when Ian won’t be home to see me feeling like crap and Eric can be at work with his mind off of this mess.

Chemo is going to last 16 weeks. I will be on a bi-weekly cycle which is very aggressive, but they have found with the triple negative, if a person can handle the aggressive schedule, the tumor responds much better. And with me being young and healthy, she feels the more aggressive schedule will work for me – I hope so, let’s get this over with.

The first 8 weeks I will be on A/C (I don’t know the exact technical name for this) and the second 8 weeks I will be on taxol. The A/C is supposed to be the worst of it – I will lose my hair within two weeks after starting and it causing extreme fatigue. The taxol isn’t as bad and my hair can even start growing back during this time!

I do realize this is going to be a very trying 4 months, but I just keep telling myself, it is 4 months – not very long. I also realize these 4 months will change me forever and I am ready to get started so I can be done. And, we already had a cruise planned for February 14th and if all goes well according to her plan, we will be on the cruise ship celebrating my cancer free body.

"October is breast cancer awareness month, which again fills the stores with pink products and pink ribbons. But many people with breast cancer are feeling exploited."

It's only September 30th and I already have pink ribbon fatigue. I ranted about about this in 2006, 2007 and 2008 (there is also a version of this rant in my book, Not Done Yet).

This year, let me point you to an excellent article by Maija Haavisto (and I don't just say this because she quotes me):

Since 1985 October has been celebrated as breast cancer awareness month, often symbolized by pink ribbons and the color pink. It is interesting to note that the awareness month was started by the drug company AstraZeneca (which manufactures several breast cancer drugs) and the pink ribbon originated from cosmetics giant Estée Lauder.

Simply put, I think a lot of breast cancer awareness month is big scam. To quote Maija's article quoting me (is this as po-mo as it gets?):

"I really resent big corporations making a profit - while donating only a tiny percentage to breast cancer research - on some disposable item that has been made under questionable environmental conditions by workers who are paid less than a living wage."

Want to do something to raise breast cancer awareness? Make a donation to an organization doing good work. Advocate for changes in environmental laws. Encourage young people to be aware of changes in their bodies. Do something nice for someone who has been affected by the disease.

And if you are craving a slice of pink cake, washed down with a glass of pink lemonade, by all means, indulge yourself. Just please don't do it in my name.

I have a lot of them in my stomach right now. I woke up around 5:45 with them and they haven’t gone away. I am not really sure why I have them – am I nervous, anxious, excited (highly doubtful – but maybe a little just to have something start happening to solve this problem).
The minutes of this morning are ticking by so slowly – I just want 12:15 to get here, so I can leave and be on my way to find out what is in my cards. I will post something tonight to let everyone know how the appointment went and what is next. Please send me positive thoughts around 12:45.

It is Monday, but how can you not smile at this?

Wow, I really can’t believe tomorrow is almost here and I will find out my fate. Then I think, how has it only been 20 days since I found out the news? So much has happened in 20 days it is very hard to think about and put into words – so I won’t because I feel like I already have and already have dealt with what I needed to deal with.

Now, I say I FEEL like I have dealt with the emotions that are “supposed” to come along with hearing this type of news, but have I? I was at lunch with Laurie today and I was telling her that I have read about so many women who were angry and wondered why them when they found out. I can honestly say I haven’t been angry once nor wondered why me. This is the way I am currently looking at it and honestly hope I can keep this in my sight once more intensive treatment starts – if it even has to. Again, I haven’t really thought about the what if’s of most treatments because I just don’t know what I am going to have to go through and I can’t compare myself to any other story out there because everyone’s story is so different. Okay, back to how I am looking at it right now – why be angry with something I can’t change with anger? Really, you can’t change anything with anger and anger takes up a lot of energy to hold on to and keep brewing. I need to use my energy to say positive, take care of myself, Ian, Eric and the hundreds of other things that happen in my weeks.

And if I wonder “why me” I know why me. Because I can handle this and I am going to make great things happen because of this. You will hear more about a project one of my dear friends, Meg came up with for me – Cards for A Cause and how we are going to take her idea and run with it and do for others in my situation. I have always wanted to leave a “footprint” behind and I know in my heart, this is going to be my contribution to make this world a better place. So, why not me? If not me, would Meg have come up with this brilliant idea and if not me, would she have been willing to take on this project with someone else and if not me, would someone else have my determination to do this in order to help others no matter what?? From what Meg has told me about the cards and the excitement behind them, I can only imagine how much of an impact this one little idea from her is going to have on me and my family and if I can be apart of that for someone else, then I know why me.

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

By definition means: a person attached to another by feelings or affection or personal regard.

To me a friend means so much more I really don’t where to start. I am not sure I can actually explain all the different friendships I have. I have friendships with people I knew in elementary school, people I met at church camp in middle school to only meet again in high school and who I swore I would NOT be friends with (mainly because she was stealing my thunder – this said friend is actually my best friend today and has been for the past 15 years), people I have at one time or another not liked very much and I am sure the feeling was mutual – I might even venture to say some people I thought I could do physical harm to – the extent of that physical harm was a good hair pull! I am friends with people who I am sure at one point (or 5 or 10 points throughout our friendship), they have wanted to physically harm me in some way – luckily, we are not the “fighting kind” and we all lived through all of the stupid adventures to be able to look back on what we had and what was so special and what molded us into the wonderful women we are today.

I am friends with people I met at work and formed an unbreakable bond while drinking cocktails at happy hour and smoking too many cigarettes, I am friends with people who we played poker to all hours of the night and then had to get up and work real jobs, I am friends with people I met by introduction of my boyfriend who later became my husband, I am friends with co-workers ex and current, I am friends with people who hold the same values I do and some who don’t, I am friends with people who have a passion for crafts like I do and desire to make the world cute.

Looking at all my friends and the different kinds of friendships I have grown to have over the years, I can’t express how grateful I am for every person in my life and for everything they have given me and helped me in some way or another to grow into the person I am today.

I received a package today that brought me to tears – not from sadness but from the shear joy it brought to me - the memories flooded back like it was yesterday. Now, I have always known how special I am in to the person who sent this to me and she knows the same from me. But this really made me think, out of all the people who are in my life, do all of them know how special they are to me and what they have done to impact my life or what trait of them I found so admirable? I don’t think they do. So in the coming weeks, I am going to let the people in my life know what they mean to me and why. So yes, you can expect a sappy card filled with my terrible handwriting letting you why you are so special.

Here is one of my favorite quotes from the book that brought me to tears: “A friend is one who knows you and loves you just the same.”

I heard from my oncologist today and I think she was more excited than I was to hear that my DRC test came back negative. Now, what does that mean you are wondering? Well, it is wonderfully fantastic news! It means I do NOT carry the “cancer gene” so I don’t have to pencil in “ovary removal” into my calendar now or in the future.

I am still recovering from the porta-cath and biopsy today. My left shoulder and peck feels like Eric made lift way heavier weights than I would want to while working out. And you don’t realize how much you use your peck muscle until you have had a plastic line strung threw it. I still haven’t removed the bandage from it, so I don’t know what it is going to look like. I told Jill I would take a picture and post it once I do remove the bandage. So there is something for everyone to look forward to!

I still can’t pick up Ian which is so incredibly hard - especially when he runs up to me and puts his head in my legs. However Eric is so great with him and keeps him occupied while I sit on the side lines and watch them play. Ian’s new favorite game is, chase and toss. Eric will ask, where is Ian and Ian gets in an almost football stance and is ready for Eric to chase and tickle and toss him around. Watching that made me feel better than any pain medicine will ever make me feel.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

Everything went well today. I had the porta-cath “installed” and the core biopsy. I am still not 100% sure how this bad boy works because thinking of something being put into my vein and staying there really freaks me out. So, I chose not to think about it and just be happy I won’t have to get an IV every time I receive chemo.

They gave me a happy cocktail which made me remember nothing and wake up still feeling good. I told Eric while I was “sobering up”, I felt like a night that I would tell my friends I would be right back but instead go to bed and pass out! HA, we sure haven’t had one of those nights in well over two years. But mark my words, we will have one of those nights as soon as this mess is over.

My left shoulder is still incredibly sure from where they put the porta-cath. My Dr. told me to expect to be sore for about 3 – 5 days and I can’t lift anything heavy, so that means lifting my 28 pound love bug is out of picture for a few days. Luckily Eric is awesome and will pick him up from school and handle the nightly duties. This is the hardest part for me – not being able to take care of our son. But, I have to remember, I am taking care of him by taking care of myself.

Might be the hardest string of words I am going to have to learn to say when it comes to excepting help from others. I am great at smiling, saying yes please and thank you, but when asked if I need help, my first response is almost always, no thanks, I’ve got it. And as most of you know, I am fiercely independent and even more stubborn. Thanks to my mom raising me to know I can do anything on own, I have taken that with me throughout my life. However I do realize the time has come to accept help graciously and try not to feel guilty about it. Oh guilt, that is fun emotion. One of my goals to learn through this journey: people don’t mind doing things to help me in whatever form, in fact they want to – just like I want to do so much for others. And most of all, when they offer to help, it is sincere and they aren’t just saying it to be polite.

On Friday evening, my friend K. will be arriving from the Netherlands for a long-anticipated visit. I haven't seen her since she flew to London to hook up with S. and me in the spring of 2008. I can hardly wait! Two more sleeps!

K. is a gastroenterologist and is coming to Canada for a conference in Toronto. She's making a special trip to Ottawa to hang out with my family and me for the week end.

The last time K. came to this part of Canada was in 2005, when she attended a conference in Montreal. I took the train to meet her, and we went out to dinner and had a sleepover. At that point, we hadn't seen each other in almost twenty years and I was worried that we wouldn't recognize each other. That turned out to not to be a problem, and I remember how my heart lifted when I saw her.

I also remember the Colossal Colon that was set up in the atrium of the conference centre. The thing was huge colossal. I was awestruck. And I seem to remember that no one else was giving it a second glance.

I was reminded of this reunion and the big colossal colon the other day, when someone on Facebook linked to an article by Miami Herald columnist and humourist Dave Barry:

"What happened was, a giant 40-foot replica of a human colon came to Miami Beach. Really. It's an educational exhibit called the Colossal Colon, and it was on a nationwide tour to promote awareness of colo-rectal cancer. The idea is, you crawl through the Colossal Colon, and you encounter various educational items in there, such as polyps, cancer and hemorrhoids the size of regulation volleyballs, and you go, ''Whoa, I better find out if I contain any of these things,'' and you get a colonoscopy.

If you are as a professional humor writer, and there is a giant colon within a 200-mile radius, you are legally obligated to go see it. So I went to Miami Beach and crawled through the Colossal Colon. I wrote a column about it, making tasteless colon jokes. But I also urged everyone to get a colonoscopy. I even, when I emerged from the Colossal Colon, signed a pledge stating that I would get one.

But I didn't get one. I was a fraud, a hypocrite, a liar. I was practically a member of Congress."

Barry goes on to tell how some jarring news about his brother moved him to finally have the colonoscopy. And other than the prep, it was no big deal.

It's called, "A Journey Into My Colon -- And Yours" and it made me laugh out loud in several places. Go read it.

And, if you're over 50, make an appointment for a colonoscopy.

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

I will be tomorrow. I go in for the core biopsy and pick-line insertion at 8:30 but surgery begins at 10:30. I am not real sure what all to expect. I wasn't thinking it was going to be any big deal but the papers the Dr. office gave me told me to expect to be "out of commission" - well, it didn't say that - for 2 -3 days. Eh, I am still not sure if that will be the case or not?!?! I will let everyone know how it goes sometime tomorrow - hey, you can look forward to a drugged up post tomorrow - now THAT will be interesting.

Today is the first day since I heard the news that I have worn mascara. No, not because all my eyelashes fell out and then grew back – do you think I will lose my eyelashes?? Eh, whatever. I wore it again today and will continue to wear it daily because I have decided there will be no more tears shed to this illness. I have realized that I have so much to be thankful for and I am so much to so many people, I don’t have time to cry about what might be – I only have time to be thankful for what is.

I started thinking about how many people are in my life and how many people are in my corner to beat this and it was truly overwhelming the love I felt just thinking about it. So with that, I made a list of who I am and need to be for the people in my life and who I love to be for them.

I am: a mother to Ian – he needs me to be a fun, upbeat, wise mother to tell him that I KNOW what he has been up to when he is a teenager because I did what he is doing.
A wife to Eric – he needs me to keep him company, hold hands with and just love, he needs me to tell him all my crazy ideas and him be able to help me figure out a way can make them a reality.
A sister – Rachele needs me to help her pick out clothes (although she doesn’t listen to my advice, she needs it ;-P), she needs me to be her little sister who she can help me find my way when I am lost.
A daughter to my mom and dad – they both need me in such different ways. Mom needs me to talk to at least 2 times a day (if she hadn’t switched from Sprint, I wouldn’t be in my minute crisis), and to laugh with her and give fashion advice (luckily, she does listen) and to let her baby me still (hey, I really don’t mind it). Dad needs me to talk to him and let him know how much he means to me.
I am a daughter-in-law and sister-in-law – they need me to actually tell them what is going on. Eric likes to skim the surface but I will give them the meat of the matter. They need to know that Eric is taken care of and they don’t need to worry about his happiness.
My friends and family – they all need me to be there for them to listen to, and give advice to (sometimes unsolicited!), to laugh with, to make laugh, to drink wine with, eat yummy food (I will have to cheat on the diet occasionally), make cute things for and hug.
I am an aunt to 3 wonderful kids that need a fun and “hip” aunt they know they can talk to when they don’t want to talk to their own parents.
I am a granddaughter, a niece, a cousin and much more to so many. I am so much to so many others and when I think of this, all I can think of is, how blessed am I to have all these people in my life who need ME?
So with that, I don’t have time to feel sorry for myself or wish this away, all I have time is to enjoy everyone around me and all they give me in return. Please, if you take anything away from me going through this, take this away, look at those in your life and know how blessed you are for what you have.

No Pink for Profit has been formed again for the 2011 Run for the Cure.

Want to help raise the right kind of awareness and help fund advocacy, outreach and research?

You can make an online donation. It's easy! It's fun! It's for a good cause.

Your support is very much appreciated.

I'm going to be on BlogTalk radio tomorrow!

The show: Lovebabz Lovetalk.

The time: 12:30-1:15 EST.

The call-in number: (718) 766-4895

The subject: Not Done Yet, Living Through Breast Cancer.

Please call in, if you can. I am really looking forward to this on-air chat with my friend Babz.

I've been really struggling with insomnia lately. Falling asleep is tricky enough, but remaining asleep is the real challenge.

Most nights, I find myself awake plagued by questions:

Where do I know the actor from who played the handyman in The Waterhorse?

Should we have washed the dogs before we cleaned the carpets?

What if my oncologist ordered a thoracic CT scan so soon after my last abdominal one because they heard something during my last exam (and not just because I hadn't had one in a long time)?

Is the hat I'm making for D. going to be too small?

Was the other movie The Truth About Cats and Dogs? (I looked it up. His name is Ben Chaplin and it he was the actor in both movies).

Was I sent for two CT scans two weeks apart because of poor planning (or poor communicaiton) or is there something ugly growing on my lungs?

If the hat is too small, should I give it to someone else or rip it out and start over?

And so on, until I realize that sleep is hopeless.

Then I get up, play a little online Scrabble (or Lexulous), look up movies on the internet, check out what's happening on Facebook and hope that I will start to feel sleepy again.

But I'm tired today and tired makes me feel melancholy (I have more on that subject but I think I need to save it for another post).

I could drink more caffeine or go take a nap but neither will help me sleep tonight. Don't know if I can help myself, though.

I would like to think we don't live our lives by odds, but I guess to some extent - we do. What are the odds it will rain today? What are the odds I will make it to work on time if I leave 5 minutes late? What are the odds I will win the lottery today (not very good!).

After looking into our hearts, thinking every possible scenerio through inside and out, deciding where I stood ethicly, I looked at our odds. We are going with the odds in my favor - 80% chance of me regaining normal periods after chemo is finished and 100% faith in God and our decision. We decided against the harvesting process for so many reasons.

My biggest reason for saying no to it is the fact I have no idea when life actually does begin. I know there are scienists out there that say the embryo isn't "alive" until it producing blood on its own (or something like that - science really isn't my strong suit) and most religions believe it begins as early as the sperm meets the egg. No one really knows and we never will, but I want to do the right thing by me and the would have been possible embryos. I just can't imagine if life does begin at the embryo state, me having something to do with freezing however many embyos for however long - possibly forever.

Let me tell you, facing an ethicial decision like this is so much harder when you are the middle of it. Everyone likes to sit on a high horse and say what they would or wouldn't do. But until you are in the situation, you never know what you would do. I was so emotionally vested in this, I could not see past the fact that I would be a horrible mother to Ian if I wasn't able to give him a sibling. But then I had to remember back to when this all began (oh, a whole 10 days ago) and remember what I told myself, I will take this one day at a time. If I look at the whole picture, it will scare the living crap out me. So, looking at today, I have to look out for my health first and foremost, get this sh*t taken care of and then we will move on with the possibility of another child. And looking at it from that prepective really helped us make the decision - I have to be the best mother to Ian right now. He will forgive me if I don't give him a sibling - he wouldn't forgive me if I didn't take care of myself.

And it was crazy, once Eric and I both said no to each other, I felt peace in my heart and knew we made the right decision.

I have been overwhelmed and touched by all the donations I've collected for the Run for the Cure.

Our team, No Pink for Profit, has more than thirty members.

I'm - ahem - tickled pink.

I've raised $1,558.00, way more than I'd anticipated. And maybe all this generosity and enthusiasm have made me delirious but I've begun to wonder, "what if I could make it an even $2000.00?"

What do you think? Is it possible? Want to help?

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

I just heard from my breast specialist about the PEM scan yesterday - ONE LUMP ONLY and 1.7 cm, which means Stage 1!!!!! Hey, if this really has to be, then this is great news for me.

Also, I added a link to the right for the race for the cure. Jenn so kindly set up a team in my name as soon as she heard the news last week. Really, has it only been 9 days since I found out? Seems like a life time ago.

Today is going much better than yesterday. Eric and I are still trying to decide what to do about the "harvesting issue" but we are both leaning more towards putting it in God's hand and letting him decide if we are going to have another kido sometime down the road. I will let everyone know what our final decision is - it will be before 5:00 tonight.

Is how I feel. Well, I think that is how I feel. I am not real sure how a fish out of water really feels. But the feeling is difficulty breathing and only focusing on getting back to the water, then yes, that is how I feel. All I want right now is for us to go back to our drama free lives – we were so happy sans drama. Don’t get me wrong, we are still happy but there is much more drama that I am not used to dealing with.

I am writing this while sitting in a small room at Dr. Nelson’s office, my breast specialist, half naked with a flimsy gown on, that has to open to the front, the ac turned down to freezing and an IV stuck in my hand with a syringe taped down to my hand. This is all after the nurse missing the first stick of the IV in my arm and having to do it again in my hand. Really, really?? How do you f-ing miss my vein – this is what you do all damn day.

Before this hurrah at this office bagan, Eric and I already had a very rough morning. We went to the fertility specialist to talk with her nurse about our “situation”. As I said before, this is the hardest part for me – the thought of not being able to have another baby. Bubbles did tell my mom we were going to have 3 babies, so I had been gearing up for that timeline in my head since Ian was born. Again, we received so much information in such a little time frame, a time frame in which tears were shed and laughs occurred. I am not sure how to put into words how I feel about the possibility of me not being able to have another child. It isn’t that I don’t feel 100% complete with our family of 3 because I do. And I know if Ian has to grow up without a brother or sister, he has a ton of little friends down in Austin, cousins in Fort Worth and Michigan – it is just one of the hardest things to hear that I might not be able to give him a brother or sister. I can’t imagine my life without my sister and I look at Tucker and Landry and can’t imagine them without the other.

So there we sat, with this chart of expenses in front of us and all I can think is, how can we put a price on this decision? Price aside, I have to figure out what my odds are going to be for me to carry a baby? After lengthy discussion with Eric, we are both in agreement that we don’t want a sergeant to carry our child. So, all this is going to ride on what type of cancer I have. If it is estrogen driven, I am fairly certain, I will not be able to even carry a child. But then if it is DNA type, I THINK I would possibly be able to carry. And of course, no matter what type it is, a lot will depend on the chemo treatment I receive and if it throws me into early menopause. Really, really – I might go through menopause before my mom? Nice, I guess I will be able to give her helpful tips for once!

No matter what we look at here, how we make this decision, I am certain this will be one of the most difficult decisions we will ever have to make. I just keep thinking, what if she tells me, you won’t be able to carry a child and then by some huge miracle, I would be able to but we didn’t freeze any embryos? Or what if we freeze 10 embryos, and then I can’t carry a child? All I can think about is what if I am leaving 10 kids frozen in time? What are my beliefs here and how do I figure them out in 24 hours. And I just don’t think there is anyone who can help me decide this – only my heart and my heart is so torn right now I don’t know what to think. All I know is that we have to decide soon – like Saturday soon. I either start the medicine now or I don’t.

There are so many balls in the air right now for me, Eric and us to try to catch, exam and throw back up and keep the juggling act going. This has been a hard day.

It's Day 3 After Chemo and my brain is jumping around like a puppy with a burr up her butt. I can't focus on anything for more than a few seconds so here is a little bit of randomness:

One:

It appears that my family and I will be among the first in line for the H1N1 vaccine. My kids will be so thrilled.

Two:

My friend Jeanne, the Assertive Cancer Patient, posted about a reader in Texas who has $187,000 worth of Neupogen that she can't use:

"Texas doesn't have a drug repository that would take this medicine and pass it on to someone who needs it, and she hates to see it go to waste, as do I.

Any ideas, readers?

Obviously, we can't break the law and put this stuff on eBay or Craigslist, so I am looking for legal ways to get these expensive drugs to someone who can use them."

Three:

Yesterday, I got a phone call from the CT booking unit at my local hospital. I was informed that my oncologist had ordered a scan of my abdomen and chest, to be administered within the next couple of weeks.

I had a CT scan on September 4. When I mentioned this to the person who was booking the appointment, she had me call the nurse who works with my oncologist to confirm that they really want me to have another one. The nurse called back today and said that I didn't need to do the abdomen but since it's been a while since they have done the chest, we should go ahead with that.

I called the booking person back and the appointment has been scheduled for this Sunday afternoon at 1:20 (I had to cancel plans). My questions: Why didn't we they just order my chest scan for the same time as my las CT? Or my next one? I have no reason to believe that my doc suspects that there is anything wrong and I bet that if I could talk to him directly he would say that the chest scan can wait until we next do the abdomen. Why should I be subjected to extra radiation, an extra trip to the hospital and an extra session of find-the-vein when we have no reason to believe that there is anything wrong (and while I continue to undergo chemotherapy)?

But it's just not worth fighting about. Sigh.

Four:

Finally, I have another finished object to show. It's a Clapotis. I totally wish this one were for me but it has been promised to someone else. I will definitely add another one to the knitting queue. I made it from Knit Picks yarn (the Gloss Sock Yarn, merino wool and silk). It's lovely stuff (especially after washing) and relatively inexpensive. It also came quickly. I'll definitely order from them again.

These photos don't really do it justice but my son was a very, very good sport about posing for them.

I had chemo on Tuesday. It was kind of a long day (I started with bloodwork at 8:30 and left the hospital at 3:30) which passed quickly due to the company of a really good friend. We had so much to say to each other that we needed the whole day to cover everything (except for when I was sleeping. The demerol/gravol combo really does knock me out).

It would have been an even longer day if I hadn't been on the receiving end of a little preferential treatment. At one point, the nurse who coordinates the chemo floor came out to reception and wrote on the notice board that they were running an hour behind schedule. I happened to be standing nearby and she caught my eye and said to me, in French, "environ" (approximately).

I was surprised, then, when my name was called a few minutes later. I passed the same nurse again, on the way in, and said, "That wasn't an hour."

"We squeezed you onto another team," she replied.

My friend, C. said, "Are you queue jumping?"

I smiled back. "It's the life-time membership."

Is pretty much the only thing I could tell myself while I was sitting waiting to be called back to the oncologist. Eric took Bug to school just like any other normal day and was on his way to meet me there. As I sat there looking at the “cliental” I know I stick out like a sore thumb. I am sure no one really cared that I was sitting there, but I felt like people were asking themselves, “is she waiting for her mom?” Nope, here for me, please look away; there is nothing to see here is what I wanted to shout out in the waiting room.
A few people walk in for a class. I think it is a class on chemo, but I am not 100% sure as I have lost a little of my eavesdropping skills since Ian! I am sure this is a class I have to look forward to.
After filling out yet more paper work, I try to read a book. That didn’t get me too far as I had to read the same page a few times.
Renee Sendelbach. Oh wow, she got the last name correct is what I think on my back. I let the front desk know that Eric is on his way and to please let him back. I had to get my height and weight again – I really don’t know why they won’t take my word for this!?! So, there I was sitting in a room waiting for someone – Eric, the dr., the nurse, someone to come in and tell me it is time to wake up and go home – the bad dream is over and I handled it all pretty well. Well, no one came in to tell me that.
Dr H, my oncologist, came in and started going over the very basic stuff until Eric got there. He arrived a few minutes and now was the time to get to the meat of the matter – what are my options from here. Dr. H is great. She is very to the point but in a kind way. She didn’t beat around the bush, which was fine with me. I am at the point of, just tell me what we are dealing so I know what all is on the table.
Here is what we now know: I had my blood drawn to have it tested for a DNA mutation. If it comes back positive, there is a high likely hood that I will have a double mastectomy and possibly my ovaries taken out. The reason behind this is if I do have the mutation, there is a 90% chance of reoccurring breast cancer and 96% chance of ovarian cancer. All I could think at this point, is WTF??? Who started talking about ovarian cancer? I am here for breast cancer.
If I don’t have this mutation, we will think about starting chemo before doing the lumpectomy. As Dr. H kindly put it, us small breasted woman have to stick together and she is afraid of the “divot” my breast will have if we do the lumpectomy right in the beginning. Not that the tumor is that big, my friends aren’t that big and any part taken out will be noticed. Not to worry though, reconstructive surgery is covered by insurance!
If it is estrogen driven, I will be on medicine to suck the estrogen out of my body – I am sure that will be an interesting hormonal rollercoaster for everyone to deal with!
There is an other slue of options that we could be looking at, but before I can pick out of the black box, I have to become a human lab rat. I am getting a PT scan and bone scan tomorrow. She says she has no reason to believe it is elsewhere but wants to all the facts before starting anything. Then sometime next week I will get the core biopsy.
And then WAM, we are hit with something that was in the back of our minds but we had barely discussed – we have to talk about the possibility of not having another baby. I think this was really the only point in all this that I cried. All I can think to myself is, why would I need to see a fertility Dr?? I am fertile mertile. We are going to a fertility Dr. to talk about harvesting some embryos, but I am sure yet how I feel about that ethically. But Eric and I have both decided unless there is a 50% chance of me carrying the baby; we won’t go through with this. And I have no idea what all is involved in this, I am sure more tests will go along with this as well.

So for now, I am trying to process all of this. I am not sure if I am in denial or what, but I am all cried out. And when I do talk about it, I feel like I talk about it so matter of fact. I am sure one day it will hit be like a brick wall what is going on and that no, I am not in a 2 week long bad dream - I am in my reality and I will deal with it like I have dealt with anything else in life - look it in the eyes and deal with it.