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Monday, August 31, 2015

Back to reality

While we are back from vacation, I am trying to stretch out the relaxed feeling for a few more days - until I go back to work Tuesday morning.

What is reality?
  • Getting on top of my list of doctor appointments.
  • Refilling prescriptions needed
  • Return library books
  • Catching up with friends
  • Laundry
  • Grocery store
  • Unpacking
  • Take care of outstanding volunteer work for two organizations.
  • Making the cat understand we did not leave him FOREVER and are BACK for a long time.
  • Taking the car for a very overdue oil change (don't tell my husband) 
  • Planning for a visit from college friends from out of town.
  • Thinking about upcoming medical adventures (yuck)
  • Planning for my upcoming fall schedule of craft shows
  • Making all my items to sell at the craft fairs
  • Planning for our next trip out of town (family vacation)
Never mind taking care of my husband and my cat....

Its starting to come together. I am ignoring the weeds in the garden for now as well.

Sigh. I like vacation better than reality.

Beauty within bull crap

I had a long drive to Rochester today, just children in my car so I thought and thought A LOT!!! I mean I wasn't going to talk to them, plus they were watching "Despicable Me" anyway. Something has been on my mind and I really need to get it off my chest (sometimes the jokes are so easy). Someone recently said to me "you are such a beautiful person on the inside" and I can not stop thinking about it. My insides are far from beautiful. First, it's bloody and gross. I have had four kids and let me tell you they tore shit up. Then it had stupid dumb breast cancer lurking and growing. I have some ovary issues and, hell, my thyroid is out of whack causing issues that I do not even want to think about right now. Abnormal, normal... what's the difference at this point? Oh, point... yes I am getting to it.
 I get the whole 'beauty is only skin deep', it's 'what is on the inside that counts'. But for people battling cancer, their inside is a fucking mess. We do not like to think about what is inside, because that is what is causing the problems, not the outside. The beauty we show on the outside.

 Yes, Jennifer Ainston and Channing Tatum are attractive people, but I am talking about this beauty that is illuminating. I see those people (I mean I do not know them and I am sure they are deep, caring people) as a shell of beauty. Just another attractive person. I have this odd knack of reading auras and colors or glows people give off, really a curse but that is for another post. Here is who I see as truly beautiful......
https://twitter.com/#!/jackieballiot/media/slideshow?url=http%3A%2F%2Finstagr.am%2Fp%2FO7VMwYgL7n%2F
This is Jackie, age 16, battling cancer with such incredible courage she radiates a bright orange. Her face, smile gives off such a light that you want to be around her. My 12 year old said "she is hot", I think amazing, but hell I am not 12. Plus she is hilarious! This is beauty.
http://boingboing.net/2012/04/18/when-life-hands-you-cancer-ma.html

This Xeni who is on her way to radiation in this pic yet her expression tells the world how loyal and trusting she is. She is so supportive to so many yet I wonder if she realizes how her powerful pic really gets others through their rough time. She radiates purple, this is beauty.
http://boingboing.net/2012/08/21/for-aileen.html
This is Aileen who lost her battle with breast cancer but was still surrounded with so much love her dog had to get a kiss. Her intense beauty is so peaceful that must help her heavy hearted family. There is that whiteness around her if you look, this is beauty.
Click to enlarge.http://mywifesfightwithbreastcancer.com/
Last, this is Jennifer who is pure love. She may have lost her battle with stupid dumb breast cancer but those eyes tell me she didn't lose love at all. She emits a positive pink glow of pure, unconditional love. I can not help but see how lovely she is in all her pictures, even the most painful ones. This is REAL beauty.

Having breast cancer has changed my thoughts on the "beauty within" bullshit. These incredible people shine beauty, eject it onto you just from a picture. Their beauty fills me with hope that the world will see beauty when they look at them, not from the inside but what their outer being is saying. Every person in these pictures astounds me in their courage, loyalty, peace and love. They are so beautiful to me!

Sunday, August 30, 2015

Ironic ending right??


Stupid Dumb Breast Cancer: A Facebook Page

Stupid Dumb Breast Cancer: A Facebook Page: Well it had to be done. Please join Stupid Dumb Breast Cancer on Facebook.... https://www.facebook.com/#!/stupiddumbbreastcancer Spread it...

Bridging the Gap

Last November I was on the planning committee and a speaker for Life Beyond Cancer's annual survivorship retreat at Lakeway Resort on Lake Travis, outside of Austin.



From: The New York Times.
          This conference is exemplary for lots of reasons:  it's not just for "the breasts," but for women with any kind of cancer, at any stage.   Women with metastatic disease initiated some of the best discussions we had:  at the end of the day, what really matters? How are you going to spend the time you have on this planet?  How will knowing each other empower you in the months to come?
          It's ironic to me. Although articles about "fear of recurrence" are ubiquitous, its silent and subsequent corrolary -  the avoidance of  women whose cancer has recurred -  gets short changed.
         That's why tonight on #BCSM we're going to talk about that.  This is not about symptoms of metastatic disease or its treatment.  It's about the experience of some 150,000 women with breast cancer, whose "new normal" can change with every CT scan.
          It is my hope that this discussion can help distill fear and deepen your compassion.  Women with metastatic disease do not need my fear, or yours.  They don't need false hope or half truths.  But your friendship and support?  There's a world in those two words.
          Let's see what we can do.
#   #   #

Tonight on #BCSM:  "Bridging the Gap - Meeting the Needs of Women with Metastatic Disease" at 9 PM ET / 8 CT

Resources:  For two exemplary voices in the struggles of women with metastatic disease please follow  @ccchronicles and @whymommy.  Powerful voices, beautiful women.

From The New York Times: A Pink Ribbon Race, Years Long. ; Metastatic Breast Cancer Network

Saturday, August 29, 2015

My hyper-focused life.

My life,and my blog, seem to be hyper-focused on breast cancer. Yes I acknowledge in my (Breast Cancer) blog that I have other ailments but I have never changed the focus of my blog even though I have questioned it. I still blog about breast cancer because it is part of my life. And I write about changing the focus of my blog but haven't.

However, I read this morning there is another disease which is more prevalent than the one-in-eight statistic for breast cancer that is tossed around. It is Alzheimer's. And the writer makes a valid point that breast cancer is full of ribbons and magazine articles on it, Alzheimer's is not.

When I first saw the article title I thought she would be writing about heart disease and felt a little pang of reminder that while two cancer diagnoses don't necessarily keep me as a potential member of the centenarian club, I do have obligations to keep other parts of my body in good shape. It never crossed my mind that Alzheimer's was that prevalent. And its just a nasty way to go.

With that said, my life should not be focused on breast cancer or living with whining about my ever present ailments. I also need to expand my tiny horizons and think about staying healthy to prevent additional, nastier ailments.

A cancer diagnosis kind of makes you take a second thought on long term planning - why am I saving for retirement at this point???? Taking care of myself and thinking about other ailments is probably just as important.

Year round pinkification

Estee Lauder is going to new lengths to create year round pinkificaiton. In October 2014, they will offer story telling videos of four families facing breast cancer. They made sure to include young and old, Asian and African Americans so it can't be deemed racist, sexist, or ageist.

They have two good reasons for running the campaign year round. The first is that with breast cancer its a year round diagnosis, not just one month of the year. That is clearly been a complaint for decades. But the other is their multimillion dollar campaign won't fit into one month. I am sure they could have made it fit into one month but it doesn't really impress me yet.

There will be personal touches through the storytelling....

"The company plans to add a personal touch through storytelling, via documentary-style online videos featuring four real-life families affected by the disease. Viewers are also encouraged to upload their own videos and stories, which may be featured on the site in the future."
Will that include the hairless body and rushing to the bathroom. And maybe they will get extra Estee Lauder makeup to cover the chemo pallor.

"Some of the donations will also come straight from the company's own pocket.  The Breast Cancer Research Foundation will receive portions of sales from 15 "Pink Ribbon" products with brand names like Aveda, Bobbi Brown, Clinique, La Mer, Origins, and Estée Lauder itself. Furthermore, the retailer will donate one dollar for each uplifting photo shared on one of their social media platforms (with a cap at $22,000)."

And the truth comes out in two little statements. first of all the BRCF will receive portions from the sale of 15 products? And how much would that portion be? A tiny $0.50 on a $50 product? That is one issue here. The second statement is the $22,000 cap on the photos shared. Does that mean they will only donate up to $22K for all the pictures shared or $22K for each of the pictures shared?

"While Estée Lauder had been planning to focus heavily on Internet platforms for some time, the recent success of the ALS Association’s Ice-Bucket Challenge proved the effectiveness of online activism, with nearly $80 million raised in one month, compared to $2.5 million last year."

Well goody for them. They are using social media and internet platforms and want to tap into the online activism as with the Ice Bucket Challenge. Sorry. I doubt it. The ice bucket challenge worked because it was a single guy who started it, not a corporation and it was a nice hot summer time where a bucket of ice isn't so bad. January would be bad. Its very difficult to create an online viral success. the best ones are teh spontaneous ones that cross borders, touch a nerve with people, and have a sensne of humor and one-up-manship (I triple dog dare you to dump a bucket of ice water on your head). 

I'm sorry a pink ribboned product isn't going to make me do much of anything. And some ad agency must be raking in big bucks for all of this.

Friday, August 28, 2015

Pissed off!!

I'm so pissed I'm not sure I can type. You know when you're so mad you want to scream LOUD! I have to run some tests this week for my thyroid; I am sure it's fine, but now there is always the "rule out cancer" fucking bullshit. I am also going to see a GYN oncologist because of all my cysts and tumors that I have had to have scraped out in the past, got to be on top of ovarian cancer, WTF! Close a door only to open one that leads to.....NOWHERE (and I do not mean Nowhere City for you Syracuse people). BUT this is what another breast cancer friend had on her blog and she is as pissed as me......
Are you fucking kidding me??? Now let me state, I am loud, a little offensive, sometimes crude, even abrasive but you have got to be kidding! This is not sarcasm, this is fucked up. Do you want the pain I've been through? How about the stress of worrying if everything was going to be ok? Or the scars... you must want the scars? Wait, no nipple-s that's a plus? Must be not having any feeling in your tattas? I have been mutated (hand crafted really) to a point I do not recognize my body, it's changed and so have I.  What about Jennifer or Aileen who left this world too short because of stupid dumb mother fucking breast cancer?  Or the woman going through hard chemo/radiation that is sick, tired, and still fighting? Nice, real nice! Do not even get me started on the two body images in the pic!  And in the words of my husband, "it must have been a man". Stupid dumb breast cancer, UGH.

I'm not that standardized

Here's a new proposal. Give surgeon's a black box to help prevent medical errors, like they have in air planes.

The proposal:

"Inside the operating room, video cameras track every movement. Outside, a small computer-like device analyzes the recordings, identifying when mistakes are made and providing instant feedback to surgeons as they operate.

This is the dream of the surgical "black box." Operations could become flawless. Post-operative complications could be significantly reduced. Surgeons could review the footage to improve their technique and prep for the next big case."

The goal is so a surgeon learns of a mistake when it can be corrected and not after the fact. They get a computer assist. And more significantly they could be adopted in the US without FDA approval as they are not a device or anything.

I'm not saying that I am against improving medical errors or anything. I have myself dealt with a few mishaps in the OR but I do not think the human body is standard enough for this. Each human is unique. That's it. We are all one of a kind.

If someone wants to operate on me, I have many issues - from lack of thyroid, previous surgeries which have left scars, and more. I know they can be programmed into a computer before hand but still.  An individual human being is needed who can interpret the information and unique qualities of the body they have opened up in front of them.

I think of it this way. You are going to a strange place and you program the address into your GPS and start on your merry way. But then the GPS sends you to a road which has a detour and it recalculates around it, so you keep going. It even tells you when you are speeding to give you additional information and recalculates your arrival time. Then it forgets to tell you that the off ramp is on the left and not the right. And then there is an accident ahead so you try to get off the highway and make another detour. And then your GPS sends you down a one way street in the wrong direction.

You needed a human there to guide you to read the signs and notice the detour ahead. Or to tell you about a new problem the patient is having.

A friend had a bad colonscopy and had to have a colectomy. The surgery took much longer than expected because the doctor who removed the polyp at the colonscopy did not note correctly where it was that it happened so the surgeon had to spend quite a bit of time looking for the exact spot. What would that little black box do then? React like the robot in "Lost in Space"? 'Danger, Will Robinson, danger!' That wouldn't exactly prevent much of anything.

There is research going on with these currently in Canada with plans to test them in Canada, Denmark and South America.

But I am really not ready for them to be used on me anytime soon. I would rather have a better trained surgeon than a computer assisted surgeon operating on me.

in pictures




























These are some illustrations for the post I wrote on August 10, about our trip out east. Thanks to my sister in law, B. for taking the horse photos. There is NO WAY I was letting go of the reigns long enough to point and shoot.

Thursday, August 27, 2015

Jigglers anyone?


jell
See it jiggle it, watch it jiggle… I know you are thinking what the hell is she talking about. I went to my plastic surgeon today discuss what we are doing about this implants that my body doesn’t seem to like. I asked about the DIEP and he had to jiggle my belly to see if it was big enough. For the first time in my life sucking it in was not an option. Come to find out that cancer gave me just enough to have this with the disclaimer of small boobs. I was not a candidate for this originally but cancer gave me some extra weight. So I am onto a LONG surgery followed by 5 days in the hospital 2 of which are ICU this is no joke and not at all what I ever thought I was going to do but my gut (blahahah get it) is telling this is right. Totally getting some killer shoes for this stay!! Why the hell do I want this?? Well, let me start by saying these implants are not right, puckering and up to my throat and moving to the pits. None of those things look very good. The PS will fix my scars that are so raised up you can see them through shirts. The keloids are bad and they suck!!  That is the first and actually easy reason. Now on to the bigger… I feel like a friggin alien!!! I have no idea whose body this is that I am living in. I could not feel more for lack of incorrect grammar “faker” than I do right now. I constantly am aware of these 2 fake things attached to me. They are like a science experiment that I didn’t mean to do. I skipped lab in HS so this is not what I signed up for. I hate how they look when I take my clothes off it is like I see my head but what the hell am I attached to. And if one more person tells me how great they look I will seriously punch them. When get out of the shower I cry, a lot. There is such an emotional part to this journey that can only be described if you went through it. No breast does not define a woman but they are part of us. Whether you choose to be flat and fabulous, implanted or flapped out they are a part of you. Society puts a lot of focus on breasts and because of that we put notions in our own head of how our body should be. I want my old body back but I know that is not a reality. So what I need right now is to have me, no silicone just me. Part of this is that I am far from a fake, I am who I am like me or move on. I almost feel like with them I am impersonating someone. No I am not on crack I am totally straight. These implants have taken me and made me self-conscience and I hate that. I can’t even begin to explain the reasons why I do not have enough time and I do not want to bore the hell out of you. Now I know if you are reading this and never had cancer let alone breast cancer you are thinking “can’t she just be happy she is alive?” I can yes I can, but that is not the issue here. Cancer changes you so much and while I will never be back to my old self I want to feel little like me. Is this decision for everyone? No it is for me. I have friends that LOVE their implants and are doing great with them, or are flat and completely happy . I need to be myself really me whether you like me or not I have to like me and right now I am not digging this body. So I will shop for some stilettos and shine my tiara and get ready for one big ass surgery or better yet one gutsy surgery!!




Surgical glue...will it ever come off?

"Surgical glues (also called surgical sealants or adhesives) are used after a surgery or traumatic injury to bind together external or internal tissue. Surgical glues can be used in conjunction with or as an alternative to sutures and staples; they use a chemical bond to hold tissue together for healing or serve as a barrier to stop the flow of bodily fluids. The five main types of surgical glues are fibrin sealants, cyanoacrylates, collagen-based compounds, glutaraldehyde glues and hydrogels..."

Read more: Types of Surgical Glue | eHow.com http://www.ehow.com/list_6048066_types-surgical-glue.html#i



Seriously, after reading that I am starting to wonder if it will ever come off. Not only am I still flaking off, but it's itchy as all hell. Isn't it bad enough I have to deal with these big fucking bricks (ie expander's from hell) in my chest that are suffocating me, but I want to itch my scars like a wild woman. Too bad I can't feel my chest to scratch it because I have no feeling in my chest!! I would love to lay on my side but the pain is still there and it's uncomfortable beyond words. I can't wait to get my first fill this week that should add to my bitch. Do not even get me going on coughing and sneezing, OUCH! BUT...... I am alive! The pain and itch tells me that. So, as much as I want to just wallow in self pity, I won't because of the women who have lost their battle. Really for all those fighting any cancer because all CANCER SUCKS!! I just will not let it suck the life out of me. That would be disrespectful to Jennifer, Aileen and any other person who has lost their battle.

So I will take the itch and be glad its not head lice. I will take the pain and be happy I feel. The surgical glue well I will deal for now but I won't like it. Rome wasn't built in a day, I need something to go on about.

Starting to plan for the Photo show in October, so make sure you check back this week for the date and info!

ottawa folk fest 2009


It's a highlight of every summer for my family, and this year's
Ottawa Folk Festival was no exception (although we did miss S. a lot. He's staying with his Grandma and going to comedy camp. He says they spend their days doing improv routines and watching highlights from Saturday Night Live. The kid is in heaven). And this year, despite forecasts to the contrary (and some really nasty looking storm clouds) the weather was perfect.

I think I kept the rain away through sheer force of will.


This is
Vishtèn, a group we really liked from PEI and the Magdalen Islands. Other highlights for me included James Keelaghan, the Good Lovelies and a workshop called Outstanding In Their Field that featured Digging Roots (excellent musicians, great voices, hard rocking native musicians), the Arrogant Worms, Charlotte Cornfield, Tall Trees (the teenage winners of this year's "rising stars" award. I was really charmed by them) and Stewed Roots. I also think I might have fallen in love with Victoria Vox and her ukelele.

My spouse and I both loved James Hill and Anne Davidson.

Every folk festival has moments of magic. T. (whose personal highlights were a lot like mine), D. and I all agree that those moments this year came courtesy of the Common Ground Cross-Cultural Collaboration (couldn't find a link to explain this amazing process of bringing together artists from all over North America and throwing them together to make music):

"When the artists are having fun it is infectious. Our final daytime show ended with the whole group getting off the stage and leading the audience dancing around the room. One of those special festival moments."

On Saturday afternoon, my sister and brother-in-law collected D. so that T. and I could enjoy some child free time and take in some music without being subject to the (sometimes tyrannical) whims of our youngest child. That night, we stayed to the very end (although, I did take in Bruce Cockburn while lying down with my eyes closed. It was nice).

Attending the Folk Festival with a six year old is a different experience. You don't always get to choose what concerts you attend and you can never be sure if you will hear a full set.

But I got to sit in the shade with my son between my legs. I listened to music and watched his face as he read to himself (hooray for reading!).

I balanced him on my knees and we listened to music together.

And we all danced our hearts out.

While it was frustrating to miss out on some workshops I wanted to hear (like Songs From The Road, featuring Bruce Cockburn, Steven Page and Joel Plaskett), I got to do and see some things I might have missed entirely.





We spent more than an hour building a model of a
cob house.

We watched some folks learning to dance the Charleston.

D. painted his name in Japanese characters and made an origami flower.

And we did all this without setting foot in the kids' tent.

Going to the Folk Festival with a six year old is exhausting but I don't resent it for a moment (although I would probably feel differently if we hadn't had the break on Saturday).

And the thing is, I think that these are the memories that will stay with me.


And it wouldn't be the FolkFest if I didn't spend some time knitting in public.


I didn't even mind when, at around 5:00 on Sunday, D. announced that he wanted to leave. It would have been great to stay and hear the evening concert but going to St-Hubert for dinner was special in its own way.

"This is such a great feast!", D. announced. It was a great end to a wonderful week end.

(You can see the full list of FolkFest artists here).

Wednesday, August 26, 2015

A Facebook Page

Well it had to be done. Please join Stupid Dumb Breast Cancer on Facebook....
https://www.facebook.com/#!/stupiddumbbreastcancer
Spread it like cancer, ok bad joke but it is like 1:30am and I am tired!

he's only six years old


Today's scheduled post is being pre-empted by a story I want to share with all of you.


My younger son, D., had an appointment at the dentist's today. I decided to turn the day into a special outing and go out for lunch and then to the movies (G-Force. I still do not like rodents).

When the movie was over, he announced that he had to go to the bathroom. As I wrapped up a phone call with my spouse and went to open the bathroom door, a man stepped towards me and said, "I think he's way too old to go in there with you. He looks like he's at least four years old."

I thought he was kidding. I smiled and said, "He's six."

"Six! You really shouldn't be going in there."

He was serious. And outraged (I'll bust some stereotypes and tell you that he was young - no older than early 30s). As I stepped around him and gently pushed my son through the door, I heard him say, "I'm going to talk to the manager."

I was flabbergasted.

D. was quite upset as he has been really reluctant to go into the women's washroom for the last year or so (although lately he's gone in with me when we are out alone without complaining).
He was mortified.

I am not an overly protective parent nor am I prone to paranoia. I also know all that so many more children are harmed by adults they know than ones they meet in the bathroom at the movie theatre.

However:

He can barely reach the taps in public washrooms, let alone the soap dispenser.

He often can't get the stall door to close.

Sometimes, he can't get it open.

Despite his protestations, he's afraid to be by himself in an unfamiliar place.

He's six years old. And it is still several years before I am going to let him out of my sight in any public place.

When I was six years old, a stranger exposed himself to me.

I let my 11 year old go into the men's room by himself. Once, when D. had a friend with him at the movies, I let both boys go in together and stood outside with my heart in my mouth until they re-appeared (I asked if they had washed their hands. My son said, "Yes!" His friend said, "No, you didn't!").

I think the answer to "When is your child old enough to [fill in the blank]?" depends very much on the individual child and on the parents' comfort level (I often say that it's really good that my boys have two parents, otherwise they would never be allowed to do anything). I am, however, very comfortable asserting that my six year old will be coming into the women's washroom with me for a while yet.

And what's the big deal, anyway? Women's washrooms have stalls. It's not as though D. is peeking under the doors. When I went to university, at least one of the residences had only co-ed bathrooms. Now that was weird - brushing my teeth in the morning and having some guy walk by in a little towel.

How do you handle the bathroom situation when out with your kids? How do you feel when you see a child of the opposite sex in a public washroom?

Tuesday, August 25, 2015

Can you cure ALS with a bucket of ice water over your head?

Is it the same as putting a pink ribbon on breast cancer? Don't get me wrong here, I think the ice bucket challenge is raising awareness of a horrible disease and it is increasing donations to a worthy organization (unless you are Catholic and have a problem with the stem cell research they advocate). Before you grab your big bucket of ice water and are thankful this challenge is going around in August and not in January, please take a moment to think.

Is what the ice bucket challenge is doing for ALS more than what a pink ribbon does for breast cancer? Seriously.

For everyone who wore a pink ribbon or did the ice bucket challenge can you please tell me three specifications on each disease? Statistics, or life expectancy, or number of people living with it? What does ALS stand for - spell it and pronounce it without looking it up?

While awareness is great and donations are even better, we all need to step out of our little bubbles and learn about these horrible diseases - and there are many more - and what else can be done besides painting the world pink or pouring ice water on your head.

And is this just a passing fad? Or will it be an annual event every summer where the world pours ice water on their head to make a horrible disease look easy and then everyone dries off before pulling out the pink stuff?

not done yet reviewed for the cmaj


I have recovered from chemo but a week end at the
Folk Festival and a night of insomnia have left me completely brain dead.

In lieu of any original content on my part, I wanted a share a wonderful review of Not Done Yet, published in this month's Canadian Medical Association Journal.

A physician who treats breast cancer patients might wonder what this blog-cum-book could offer a busy professional whose daily practice likely holds its own heartbreaking quota of Lauries...

However, Kingston’s book provides the detail and emotional shadings that give meaning to these stark, exterior facts. The honest telling of a singular story weaves the experience of cancer into the whole cloth of a life, reworked after a devastating rupture. She vividly integrates events and see-sawing emotions...

Comfortable in her lay-expert role and an inveterate listmaker, she draws from the negative encounters to compile pointers for health care professionals: "Don’t look horrified when I tell you I have metastatic breast cancer; … Don’t ask me questions about my treatment[s] that are irrelevant to the procedure being performed and/or outside your sphere of knowledge [p 190]"

The author of the review, Sharon Batt, is a Doctoral Candidate in the Department of Bioethics at Dalhousie University. She is also the author of the book, Patient No More: The Politics of Breast Cancer about her own experience.

Many thanks to my friend N. (herself the editor of Women Who Care - an upcoming book about "Canadian Women’s Personal and Professional Experiences of Health Care and Caring") for submitting my book to the CMAJ for review.

You can download the full pdf of the review here.


Monday, August 24, 2015

Challenging myself


As you amass ailments, you start crossing things out from the list of things you used to enjoy but no longer. I have a very long list of things I used to enjoy and can't any more. I used to kayak. I liked to kayak. I stopped kayaking when my back starting going bad. Then rheumatoid arthritis complicated things a bit more. Combined with lingering tennis elbow in my right arm. I often wear a wrist splint on my right hand as well to reduce the pain in my left elbow and wrist.

Then we came to Cape Cod on vacation with my family. My brother said he was bring kayaks - one hard shell and a couple inflatable ones. In my mind, inflatable kayaks are like any other inflatable boat - you don't really have to worry about ramming into anything because you will bounce off. But they are impossible to steer - like trying to paddle a balloon. You get my drift (okay that was a bad pun) that I am not interested in paddling an inflatable boat. I figured my brother and his four children would be happy with those kayaks and I would stay away.

But then it turns out two of the four children don't like to kayak much. One of the two remaining children who like to kayak also likes to sleep late. Leaving one child who might want to kayak but temper tantrums are not invited.

The other morning, my brother, husband, and I set off on a morning kayak. I wasn't sure how far I could go and how my arm would feel - as well as my back and shoulders and other body parts - but I  just went. My brother was so confident of my abilities he brought a long bungee cord so he could tow me back if necessary. My husband limited himself to giving me advice not to over do myself.

But we kayaked. I did fine. Getting out of the kayak was another story because I landed on my butt in three inches of warm ocean water - and then I had to stand up from the ground. But I was wearing my bathing suit. I did need a nap but didn't feel horrible amounts of pain during or after kayaking.

Yesterday morning, my brother and I were up early and decided to go kayaking again. We were discussing the complete lack of wind and how calm the water was.... Until we put the kayaks in. Then the wind immediately blew up and the tide was running hard out. We chose to paddle slightly downwind across the channel so we could paddle along the leeward side of the island. Finally I needed to stop and turn back - my shoulder and arm were telling me it was time.

We paddled back along the sheltered side annoying the birds until we got to the channel Then the fun began. We set up our plan. My brother offered to tow me. I said he could go behind me in case I ran into problems. It was a hard paddle diagonally across the tide current and the wind, but I made it.

In thinking about it, I really did challenge myself to try something I haven't thought I could do for several years. I am not sure I am up to kayaking again this morning because I can still feel it in my arm. But I did it successfully. I didn't have to hop in and swim for shore or get towed in and I didn't cause excessive amounts of pain.

I'm happy. That was a big personal success.

I think as a long term patient, I have let myself get in to the realm of being a patient where I find it easiest to say no I cant instead of challenging myself to see if I still can.

LiveStrong Summit

For more than 11 years, Lance Armstrong has pursued cancer with the same determination that made him a seven time Tour de France winner.

And today, the effort reached new heights with the opening of the LiveStrong Global Cancer Summit in Dublin where Armstrong, staff from Lance Armstrong Foundation, and some 500 delegates from around the world gathered for this first time event to define -- and map a plan for -- a world without cancer.

During today's opening ceremonies the traffic from the tweeting delegates brought Twitter processing to a near standstill any number of times. Photos from registration, the city's narrow winding streets, and heart stopping chalk written messages must have sent all the orbiting communications satellites into spins. Just my twitter page alone was jumping so quickly with delegate posts that I had to sit still to avoid vertigo.

All of us want to be there, to pass on that feeling. The excitement. The community. The immediate friendships. This kind of advocacy has not been seen for decades. It's a kind of grass roots momentum that is one part Iowa optimism, combined with youthful invincibility and communicated -- immediately -- via incredible technology. It's 'can do' with ITALICS.

There will be many announcements from the LiveStrong Summit. We will all be more informed on the world's cancer dilemma. Then we can all pray, and work, and imagine, for the time when cancer will be nothing more than something that used to happen, years ago.



Sunday, August 23, 2015

grateful through my tears

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world." - Hon. Jack Layton (1950-2011)



Where There's Knowledge Hope Follows

The LiveStrong booth at the World Cancer Congress,
August 20, 2010 in Shenzhen, China.
This past week two significant reports sent waves through the cancer universe.

The first had to do with the global financial burden imposed by cancer and the other -- if not proof then -- a clear finding that palliative care can not only ease the suffering of terminal cancer patients but actually extend their lives.

First -- the Global Cost of Cancer

While understanding of the global extent of cancer has grown, for the first time ever a study conducted by the Lance Armstrong Foundation and the American Cancer Society attached a number to its worldwide economic toll: $895 billion. This figure -- or 1.5 percent of the world's gross economic product -- doesn't even include the cost of treating the disease but represents financial losses from premature death and disability.  If those medical costs were included the figure would more than likely double.

Another way:  cancer's economic impact represents the "....single largest drain on national economies, compared to other causes of death, including HIV/AIDS and other infectious diseases."

And another way:  women in the United States (and probably UK, as well)  diagnosed with breast cancer have an  84 percent chance of surviving for at least five years. In Gambia? 12 percent. This from CanTreat International, a working group of worldwide cancer experts. Their work also emphasized the looming cancer crisis in developing countries.  Both the CanTreat and LiveStrong/ACS reports were presented at the 10th World Cancer Congress in Shenzhen, China.

Our advocacy is not only essential to women here, but we need to embrace it as an asset to share with our sisters around the world and raise awareness, diminish stigma, and improve screening and treatment. Let's continue to form alliances with other women, teach each other, and listen to each other's experience.   A worldwide cancer burden isn't something "out there" or "down the road."  It's now.

Knowledge Brings Hope 
The phrase 'palliative care' may be one of the most misunderstood terms in the entire cancer vocabulary. Years ago I often considered palliative care as a sad and  parallel universe.  It was a place I wanted to avoid when I was in treatment, as though to even brush into the words would mean that my boat called hope had shipwrecked.

Not so.

This week a finding reported in the New England Journal of Medicine, arriving as it did on the heels of Atul Gawande's stunning article (“Letting Go”) in the August 2 The New Yorker – defined clearly what palliative care is and what it can do. 


In the study, patients newly diagnosed with aggressive lung cancer were provided palliative care in addition to standard oncology care. The other group received standard oncology treatment which primarily involved chemotherapy. The patients who received palliative care and standard chemotherapy had less pain, less anxiety and less depression and also lived almost three months longer.  


Three months may seem like the blink of an eye when you are in the thick of things, but consider how much that time means to a family supporting one of its members at the end of life.  Every day spent comfortably in the company of loved ones is a time of grace. 

In essence palliative care, which literally means to soothe or relieve, is a “seamless model of care across a range of care settings.” A team composed of multiple specalties designs care to provide the patient and family with the best possible quality of life.  This can range from coordinating community services to supporting decision making and controlling pain, in a hospice, hospital or home setting.  Above all else it is holistic.

The study’s author, oncologist Dr. Jennifer S. Tegel, said that doctors and patients “traditionally see palliative care as something extended to a hospitalized patient in the last week of life.  “We thought it made sense to start them at the time of diagnosis.  We were thrilled to see such a huge impact. It shows that palliative care and cancer care aren’t mutally exclusive.”

Palliative care and cancer care aren’t mutually exclusive.

It also seems to me that the combination of the two could be called wise medicine.  Humane. We may be approaching a time when medicine makes sense, when we, as patients seek physicians to help guide and advise us over and through difficult passages.  Oncologists can provide a set combination of tools to tackle your cancer, or mine.  But a bag of chemo or a round of proton therapy is never enough.  Everything that promotes healing – physically, emotionally and therapy – comes into play and is part of the plan.

This can mean letting go of the “security blanket” of traditional care, when walking away from a hospital or cancer center is an act of great courage.  It does not mean you must walk away from medical support.  A friend in Minnesota wrote movingly of her husband’s decision to let go of threatment and face “life’s great, last adventure” at home.  She posted a photo of the view he had from their bedroom window on a clear and icy January morning. He died not long after that, with none of the agonizing and intrusive measures Dr. Gawande’s article so clearly decribed.  

n  For your courage and grace BA, and in memory of Jack

Note: Something interesting from the NYTimes article the NEJM study:  Dr. Jennifer S. Tegel herself has been a cancer patient.  Sometimes it takes a cancer patient to break ground and help move care another step forward for others.  Hats off Dr. Tegel, with continued wishes for your health and happiness.

Additional information:

1) Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO) offers an incredible resources at http://www.caringinfo.org including downloadable material on state-specific guides, legal considerations, planning ahead, and more.


3)  On Twitter:  Wednesday evening Tweetchat with professionals in palliative medicine.  Use the hashtag #hpm to bring up the discussion and confirm time and topic @HPM.  This caring and commitment of the men and women in this group shines through loud and clear.   Wonderful people.

Saturday, August 22, 2015

Why do I do what I do?

I'm not talking about cancer, I'm talking about volunteer stuff. I never used to volunteer. I mean rarely did I volunteer. I was too busy having a life, or trying to at least. Ten years ago, I got bit by the volunteer bug and now I seem to fill my life with volunteering.

In the past ten  years I have: been on the board of the friends organization for the town library, volunteered at Komen events, volunteered with Relay for Life, volunteered at the local cancer support organization, worked at the annual conference for NEDMA, help the Cystic Fibrosis Foundation with their website for their annual fundraiser, briefly helped with the local chapter of the American Diabetes Association and one of their annual events, helped NECCS with their annual luncheon and fundraiser, and volunteer with Casting for Recovery. There's more but I can't remember.

So why do I do all this? Because it makes me feel good. I don't do more than I should. For example when I help CFF, they send me an email and say can you please update our website with this information. Or I helped NECCS with their vendor round up. I could do it from home and not have to leave the house.

I help several causes. Many are cancer related but not all. I have decided that is not as important as I previously thought.

But before 2004, I never volunteered. Especially for cancer stuff. I didn't want to be as open about my medical stuff than I had to be.

But now I wonder why I didn't. I volunteer with people and I have no idea if they had the ailment or not. Nor do I care. Because that's not the important part of volunteering. The important part is getting that warm feeling from helping others and see a smile on people's faces when they experience it.

And I can show them how I got through cancer treatment and there is life on the other side. But then I have to admit I had cancer too - and that's part of my healing process too.

Filler up

Went today for my follow up check and everything looks good. Healing is coming along nicely, too bad it still looks like a patch work to me, but the doctor knows best. I have some air pockets,but  there isn't fluid build up any more! I decided to get the first fill next Friday, unleaded or desiel? I am nervous yet thrilled the process is coming along and the final results will be in. I may get one more fill before the healing of the scars and tissue begins. We scheduled the surgery for November 9, I have a very important holiday party on December 1st and NEED to get the right dress for! I hope to show the girls off in a fabbbbbbuuuuuulllloooouuusssss dress and my surgery heels!
So on a very important part of this visit, I got cleared to add some weights to my work out and kick it back into gear! This could not be better timing because my weight bitch is back today, that is MC FYI. Come Sunday morning I get to get back to class. Yipppppeeeeeeee!!!! Ok, so she did say 3 or 5 pounds only and bitch push ups only but still this makes me so happy like over the top excited. Not working out has directly affected my mood, you are just one work out away from a good mood, so I am like 500 behind. I just want my fucking body back, granted it is the updated remodeled version but it's my body.
Tomorrow is the great NYS Fair. And anyone who knows me- I mean anyone- knows that opening day is my favorite day. As a little girl my grandma and I would go have breakfast and wait until the buildings open. "If it's free, it's for me" was her favorite saying, my Sammy boy now says it the whole day. We went to the fair every single day, literally, even if it was just for dinner. We went when it opened and stayed until it closed. I worked there all through high school and loved every minute of it.  I am so happy I do not have to miss opening day. If you ever get lost anywhere at the fair just call me I know every short cut there is. So tomorrow if you are trying to get ahold of me, don't stress that I am not getting back to you right away, remember I will be looking at the cows, love them, checking out the chickens, why are they near the chicken dinner restaurants?, holding chicks in 4H with my boys, and eating....ahhhhh eating! Deep fried pickles, deep fried snickers, deep fried Oreos, deep fried Mac n cheese, corn on the cob, wine slushies, AND PIZZA FRITTE only at the Villa only!! Oh and the butter sculpture......oh wait and the sand sculpture.....so much to see and do, sooooooo excited!

Research turns theories upside down

I read Dr Susan Love's blog - she writes well and she knows her stuff - and I have heard her speak so I feel a connection. Recently she posted about some interesting new research which has some wide implications. While the research itself sounds interesting, I am more interested in Dr Love's comments about the research.

She makes the point:

"Two new papers have been published which are causing many to reevaluate their thinking about cancers and which cells are important.  Once again, our previous theories have been stood on their heads!"

So what was believed was wrong. We need to remember that. As research progresses and we learn more and more about things, we often find we were completely wrong. (The world used to be flat, wasn't it?)

We have to remember that when new research proves other research wrong, it doesn't mean it was anyone's fault. We didn't know there were options. We didn't have the technology to know then what we know now. Sometimes we have the tendency to say 'If I had that treatment, I would be so much better off.' But we can't beat ourselves up for that.

On the flip side, we have to remember as we learn more and more about cancer, those pesky five year statistics tables are based on old technology so they are outdated. And we can assume, rightly so, that our odds are better than those stupid tables.

And more research may disprove the latest breakthroughs in the future but we are doing as best we can in the interim. Meanwhile, back at the ranch, I am still waiting for that cure for cancer that Star Trek says they discovered in the 21st century.

Friday, August 21, 2015

My sweet little cousin sending me love

My little cousin Halen made this for me! So so so sweet, we all start out that way.
I want to explain why this was posted. Halen is 9 years old and showing her support to me the best way she knows how. The bigger picture is this... She is going to be breast cancer aware for the rest of her life. She will remember to get herself checked and hopefully remind her friends. This is why I am so proud of this rock and shell creation!

Thursday, August 20, 2015

Crazy ass loud Italian cancer free party

Sometimes I think my family just needs an excuse to party. What better one than me being cancer free!? My cousin hosted the day complete with pink well...everything. The food and wine flowed as did the water balloons and pranks. Some may find it humorous to play a joke on others but they tend to forget who they are dealing with. You know who you are! Being with all my family today meant so much to me. This has been a long, stressful, painful summer and I am ready to just be me. People keep telling me how strong I am well these people are what make me powerful. I am the woman I am today directly because of every person there. Some added wisdom and guidance, some strength, power and humor and sarcasm,  but all added love. We maybe crazy and loud and crazy again with some extra loud but when push comes to shove you better not mess with us because we are strong for each other to a fault. Thanks so much my crazy ass loud Italian family, this lumpy stupid dumb breast cancer summer did not stop our partying!
All Craziness
JUMP
Big Sister Lori


My Daddy and G-Deb
My brother Al
Sweet Halen Rose

TFO



The Hostess Heather


My girls and my boy

twilight zone

Nurse (shouting from the other room): "How old is your port?"

Me: 7 years

Nurse (still hollering): Holey Moley. That's old. (pause) Are you sure?

Me: March 2006.

Nurse: When was it last accessed?

Me: 4 weeks ago, tomorrow.

Nurse: What are you getting?

Me: Herceptin.

Nurse: For 7 years? 

Me: Yes.

Nurse: No. Herceptin is for one year. 7 years is not possible.

Me: It is when you're metastatic.

Nurse: Are you on (name of drug I don't remember)?

Me: No. Herceptin.

Other nurse: It's Herceptin. I checked her chart.

Unbelievable.

more soup


Starring (in order of appearance): olive oil, onions, garlic, garam masala, chipotle powder, water, vegetable stock, brown lentils, tomatoes, yu choy sum (Chinese greens), lemon juice, ground coriander. Served with a dollop of yogurt.

Loosely based on a Lebanese lentil soup recipe from the Toronto Star. I was out of cumin so substituted the garam masala. Ditto on the chipotle powder instead of cayenne. Soup is spicy but very, very good (if I do say so myself).

Wednesday, August 19, 2015

Life with chronic pain

I was very intrigued to read this article on a man's advice on living with a wife in chronic pain. I admit I might be guilty of some of the first ten myself. My husband does pick up on when I am overdoing things and cues me to take it easier.

I also know sometimes when I want to do things and feel like I should do them but just don't have it in me. I try to work around it. I'll lie down for a while and then try later on. Or I'll put it off until the next day. Sometimes I ask my husband to do things for me - like making dinner - because the idea of standing in the kitchen for ten minutes just isn't a good idea.

If you read his list, you will get a better idea of what  life with chronic pain is like. And its all relative. His wife had a C-section without anesthesia (eek!) and that's her high pain point. My high pain point was probably when I tried to stand on my blown out knee on the side of a ski slope. Or when I had my drain pulled out. Or... I don't know. Those were all very painful moments and there are others.

For me when my back hurts so much I can't stand up, I call it a 7. Right now, sitting in bed after a good night's sleep it might be a 4. But I'm not telling my husband so we can play mini golf and go for a walk. I'll sit in the car and let him drive as we go off to have fun. But I'll also take my bottle of pain meds with me just in case it gets a little farther up the pain scale.

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Insurer bias - or why insure (expensive) sick people?

One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.

Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.

For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.

I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.

Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.

Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.

And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.

To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.

Each year  you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?

I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.