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Wednesday, September 30, 2015

Are we all braced????

It starts tomorrow. That ugly pink month. Go celebrate Columbus Day, Halloween, apple picking, leaf peeping and other seasonal activities. Go help organizations with their fundraising activities that do not require pink feather boas.

For myself this month I am doing the following:
  • Arranging a luncheon for a non profit that I volunteer with. 
  • Awaiting a back procedure which should relieve a lot of my current pain at the end of the month.
  • Enjoying a family reunion on the coast of the Pacific Northwest - some place I have never been and always wanted to go. (We always have a house/cat sitter while we are gone so burglars, don't even think about it.)
This is what I am not doing:
  • Wearing more pink clothing than I usually do. I like the color pink and have many pink pieces of clothing.
  • Participate in any pinkified event
  • Purchase any non-essential pinkified item.
Will you join me in boycotting pinkified items and events?

Thank you.

Tuesday, September 29, 2015

How idiotic, insensitive, and just plain dumb!

I read this article and the first words pissed me off:

'“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”...'

Why is the word cure being used in conjuction with breast cancer? There is no cure! (Insert expletive here). At first I questioned his percentages and it is true that just over 200,000 cases of breast cancer are diagnosed in the US each year and just about 40,000 women will die from it. 40,000 is 20% of 200,000. I don't think the other 160,000 consider themselves cured, more like they spend their lives in watchful waiting. And a woman diagnosed with breast cancer can die of any number of other causes besides breast cancer before their disease becomes terminal.

'“What we are left with is this 20 percent where clinic-based drugs are not adequate, but we mustn’t burden the 80 percent for whom today’s standard is adequate, giving those patients unnecessary and experimental treatments,” he said.'

Really? Can you tell me which of the women with diagnosed with breast cancer are in the 20% or the 80%? We have some ways of telling but many women get breast cancer who have no know risk factors. Like me. 

Here's more: 

'In years past, treatment of breast cancer was limited to surgery, chemotherapy and radiation. Today, drugs are being used to rid the body of cancer cells before surgery becomes an option.

“That method has several effects. One, you can get away with lesser forms of surgery - lumpectomy vs. mastectomy. More interestingly, you can track the effectiveness of the drug by observing what is going on in the breast. Maybe in the future we will be able to track effectiveness by looking at what is happening in the blood,” Ellis said.

Very few people today die from cancer in the breast, he noted.

“The problem becomes the cancerous cells that have left the breast. They are more difficult to track. If you could chase those cells with a simple blood test, that would be real progress,” Ellis said.
The cancer cells, once they leave the breast, often find their way into other tissues and organs. Ellis describes the cancer cells as weeds that are allowed to take root.

“If you have a dose of weed killer and you pour it on a tiny little thistle or weed, it would kill it stone dead, but the same amount of weed killer doesn’t kill a fully grown thistle. It might wilt a little and then return,” he said. “That’s very similar to cancer. Once the cancer cells begin to grow and get embedded, they can be hard to get rid of.”'

I'll just go get some 'human cancer Roundup' and blast away at those weeds before they can take root. You just tell me where they will be and if I am in the 80% or the 20%.

“The problem with mammography is that it is recommended in everybody every year after the age of 40, but only 1 in 8 women get breast cancer, so you are screening a lot of women who are destined never to get breast cancer,” he said. “High-risk patients might need yearly mammograms, but low-risk people might need it every 3-4 years.”

Hmmmm.... I was not at high risk twit face!

'When asked what can be done to reduce a person’s risk of developing cancer, Ellis said the biggest key is pursuing a healthy lifestyle, which means maintaining a good Body Mass Index (BMI).

Cancer made me fat. Starting with steroids in chemo causing bloat.

“A lot of women under-appreciate the role of alcohol in breast cancer risk. That is clearly dose-related,” he said. “Women who take more than a drink or two a week are gradually increasing their breast cancer risk. The more you drink, the higher the risk, so moderate your drinking as much as possible.”

Okay. Fine. Sobriety it is. Take all the fun out of life. As long as I can still have chocolate.

Medical screening is recommended to assess a person’s risk of developing cancer.

“If you have a family history, even if it doesn’t seem very impressive and the risk is small, get yourself over to chat with a genetic counselor. Genetic counseling and genetic risk assessment are still highly underutilized by the population,” he said.

Genetic testing is covered by most insurance, according to Ellis.

I didn't have a family history. None, nada, zip. Actually one of my aunts did some research and found that the only family history of breast cancer was one of my mother's second cousins back in the 1970s. I believe that the BRCA genes are responsible for only 5-10% of all breast cancers... So what about everyone else?

“There is no discrimination these days. That’s what prevented some women from testing because they were afraid they wouldn’t be able to get medical insurance based on their results. ObamaCare ended that,” he said.'

No discrimination? WTF? Get real buddy. Unfortunately there is a fair amount of discrimination these days against people with cancer and many other reasons. Insurance companies haven't necessarily jumped on the bandwagon of paying for genetic testing. And the question of gene ownership and patenting is still up for legal debate in some parts of the world.

Go read the rest of this article here. And the man cited here is the director of the Breast Center at the Baylor College of Medicine. He clearly has not walked the walk and has no bedside manner. He does end by saying more research is needed - especially for him...

This article made me so upset. I felt he was talking down to patients and making statements that just weren't true.

Scaredy Cat

Scaredy cat



When you find that lump your heart stops. I mean the real lump not "oh I think I have a lump" no that's just your boob dumb ass. I felt that lump and knew instantly all those other "lumps" weren't jack. Of course, the black discharge clued me in that something was for sure not normal. Anyone that knew of the lump diagnosed me, I never had so many "doctors" tell me what was wrong. Clogged duct was the top choice. UMMMM any ANY time you have black shit coming out of ANYWHERE in your body it is NOT good. Unless you are a newborn  that black meconium needs out but they are the only one. A million thoughts went through my mind during the weeks leading to the lumpectomy. Who is going to cook for my family was number one. But mainly.... Fear, sadness, thoughts of death, chemo, radiation all that enters your head in literally a split second and you feel it in the pit of your stomach. She thought she got it all and that was that.

Then pathology came back "positive" for cancer, positive is bad here but sometimes doctors say positive and its good, WTF make up your mind! The feeling was numbing, I was walking around but had no clue what I was doing. I went by myself because my doc really thought it was papilloma, she wasn't worried. I was however. Before she could even tell me I said "I have cancer".  She felt horrible I wa alone, I didn't even think like that. Plus, Nikki called me while I was in the car slamming the steering wheel, she was in shock. MC followed me after class and we pulled into Kohl's parking lot where as she read the path report (only she understood all that crazy talk) and she still didn't believe it.  My dad was watching Julian and I had to tell him, I am pretty sure he freaked when he left. I told him "Do not start crying. If I am not crying you can NOT", he actually listened to me!! Then I called Tom....it was surreal for us both. Called Rachel she was in shock, actually kept saying "are you sure?" LOL. My brother got on the phone with his oncologist friend and harassed him until he called me at 9:30pm on a Sunday. He then proceeded to come over every morning by 7am, I thought shit if I get really sick he will move in. Lori was well we all know there were water works!! Alissa thought I was lying, cause that is sooooo funny, idiot:). Jess sent me a text "you got this no biggie", which made me smile during the chaos of the day. Tracy immediately tried to find a way that apple cider vinegar could cure it. Rosie misunderstood until Megan told her. See the trickling affect stupid dumb breast cancer has and how it made all these people feel!!!

Meanwhile, I was mildly freaking and honestly scared not really for me because I researched these doctors and knew they would take care of me. But for them!! I mean I am the life of the party, the party planner, the party cook, the party thrower, the party fashion consultant and these are important to life. No really I was scared. I had just had my uterus fixed up and I was not really digging another surgery, but there was no other option. I have to say from here on in it was a blur. I remember the parties, the friends, getting extra work outs in, but I also have no memory of that time. I remember the night before surgery my Sammy boy sobbing how scared he was and knowing he needed us to be strong. He wanted me to say "I will be fine" but fuck it was major surgery I had no idea and I was not going to lie to him. Megan took good care of them in the morning and Al was there for support after soccer. Being able to Skype on my Ipad (cancer perk!!) helped us all. Ben even Facetimed me from a friend;s house that night, I am sure Patti did not expect to see me that night.

In the hospital I was still cracking jokes, offending hospital staff and barking orders. But I was so fucking nervous, the crazy thing is honestly I did not feel that then. I know I felt that because Tom and I just went through the pictures for the slide show and I saw how scared I was.The emotions came flooding back for the both of us. Through the pictures I not only saw my fear but my dad, G-Deb, my brother, friends and my husband which tonight made me cry. Right there in the pictures I can see the fear in my eyes. I was scared they were going to find more, that the nodes weren't clean, that they were going to eat something good while I was in surgery, that my doctors had been out the night before and didn't get enough sleep....that I wasn't going to wake up. I knew this was going through my head but you know all those people I mentioned well them and this whole other group that were bombing my phone were sending me all this strength, love, prayers (yes I think that energy is good), and healthy vibes. Their support helped me push out, not down, those fears and bring forth this crazy ass courage!! Stupid dumb breast cancer was not going to last here. The pictures right after the surgery I do not even remember, praise the drugs glorious drugs! Those pictures are my favorite because then I start to see relief.

I can not believe they MADE me take my shoes off!

I really hope you all come to the event at Pascale's "My Journey Through the Lumps", these pictures are truly incredible. The pictures are simply amazing I would love to show them all now but then you wouldn't come! They will make you laugh, cry, cringe, and  they are eye-opening. You will see a side to breast cancer that will make you understand why this journey is so hard on women. Why women have a hard time accepting this is going to happen to their body. These picture I hope will make you get a mammo or encourage a friend to get one. They I hope will empower you to be active and FIGHT stupid dumb breast cancer before or because it hits close to home.  I want women to be a little more comfortable while they are fighting, I want the to find the strength I did to survive and I want them to be proud of themselves because they kicked stupid dumb breast cancer's ass and still look amazing! The advance sale tickets will be on sale until October 15th or until we hit 500. I am still looking for sponsors, get you logo up on the support poster!! Do not piss me off look what I am doing to breast cancer cause it pissed me off. Plus I ain't no scaredy cat no more!!!!!!

Breast Cancer: Ready for Prime Time


Izzie Stevens/Grey's Anatomy
(great sheets, eh?)
Cancer in prime time television is a mixed bag. 
Snarkologists will recall the amazing case of the beauteous Izzie Stevens on Grey's Anatomy. Diagnosed with melanoma that had spread to her brain (clearly child’s play), she was given only a 5 percent chance of survival — and survive she did.   
After that there’s no place to go but up, so when I heard that the writers of Parenthood were bringing breast cancer into the lives of Kristina and Adam Braverman, I pounced. The show has taken on autism, substance abuse and adoption in past seasons.
         Parenthood is a multi-generational saga where all the adult children and their spouses, ex-spouses, live-ins, children and soon-to-be fur children live in the same town as Mom and Dad, just like the rest of you do.  In my family everyone moved straight out of Dodge after high school, which is why my family has not been and never will be the model for a television show. 
No matter.  A typical Parenthood show zooms in and out of each character's world and includes “real life” situations like freak-outs over Dad’s failure to renew his driver’s license,  children with stomach aches the first day of school, work woes for the single parent Sarah with Ray Romano in a new career low as her photographer boss, anal over-achievers who schedule everything on their iPhones and sub-optimal, under-achieving ones, who laugh at the anal ones yet forget to pick up the kid at school.   
Just my kind of show.  Now bring on the cancer. 
Which is exactly how it happens in the real world.  One moment you’re swimming along in the stream of life then in the next cancer drops into your world like an atomic bomb. Your thinking explodes into a million bits, while at the same time, you strive mightily to keep your formerly normal face in place.
In the lull before the storm Kristina and Adam argue in bed about getting a dog.  I swear this is a conversation DH and I had years ago, before Fur Child #One.
“He’s going to crap all over the place,”  Adam says.
“So what? So do you.” So much for wifely humor. “I’m teasing.”
         By the time that episode is finished, we see Adam and the kids looking at puppies when Kristina drives up after a medical appointment that clearly went the wrong way.  She knows what we know. This is when we see, in slow motion, how their world is about to be turned upside down.  You can see the knowledge that his wife has just been diagnosed with cancer sinking into Adam’s face, bit by bit.
Is that what it looked like, I wondered.  
It certainly felt real. 
  What didn’t feel quite as accurate were scenes with the two different physicians, stereotypes squared, that Kristina and Adam consult.  One is abrupt, hurried, obnoxious.  He tells Kristina she has an early stage breast cancer that should be removed right away and oh, by the way, he has an opening at 8 am Friday.  Color us surprised.
          His polar opposite is a female physician with a consulting room straight out of Architectural Digest.  Oh, for that sofa.  She’s on emote control, empathy and confidence reverberating in equal parts.  


In the interim, Kristina has coffee with another breast cancer patient, who seems to know exactly what Kristina needs to do and tells her so in no time flat.
What?  Really? This is when I remember it’s television.  The support of survivors is essential, but if someone I’d just met was in my face to that degree in the week following my diagnosis she would have been talking to the hand.  My ears would have sewn themselves shut.
All these nuances.  There is never going to be a television portrayal that really “gets” cancer.  Every year some 230,000 women are diagnosed with invasive breast cancer.  That means that are that many stories plus those of their friends, families, and the people that care for them. Everyone has their take on what is real about cancer.
There are two thing though, that need to undergo a seismic change across the cancer culture, from co-survivors to educators to nurses to social workers to doctors.  The first is  the notion that the internet is armageddon.
“You’re not doing what the doctor said you’re not supposed to do are you,” Adam says when he finds Kristina web surfing.  
The internet is not the enemy. The internet is not going to create fear in a patient.  The fear following a cancer diagnosis is part of assimilating new and difficult information. Patients are going to surf the internet for medical information in the exact same way that teenagers are going to pick pimples.  It is going to happen.  They are especially guaranteed to search, in fact, in absence of other information.  If the physicians we turn to aren’t routinely sending their newly diagnosed patients home with a list of excellent web sites (that is if the physician doesn't have his or her own!) on breast cancer, and many helpful books as well, then part of the job has gone undone.
The other seismic shift, equally shared in medical culture, is how to play the role of positivity in dealing with illness.  Most women diagnosed with breast cancer aren’t feeling sick to begin with.  They walk from the land of the well into the land of the bald, the nauseated, the medical record number, the breastless and the reconstructed. Then they are encouraged to stay positive about all this, as if failing to do so will somehow impede their survival. 
Think about that.  It makes no sense.
This plays out as Adam and Kristina navigate the first murky, anxious days following the consults.  When he finds her surfing the web, he reminds her that she needs to stay positive.  Here’s what happens later.  This is scene scripted from any cancer patient’s life.  
To the writers and cast of Parenthood?  Well done.
“You just have to let me be scared.” 


#   #  #





From Co-Survivor to Survivor - How the Cancer Experience Changed My Advocacy

Hope changes everything. Hope is everything.

This morning there's been an extraordinary dialog on Twitter (http://twitter.com/jbbc) regarding cancer advocacy, and whether or not those who have not been diagnosed with cancer can truly understand survivors/survivorship. The answer is, OF COURSE! In fact, "co-survivors" -- or the daughters, sons, partners, sisters, brothers, friends -- have some of the strongest voices in the survivorship community. What makes an effective advocate is the ability to listen, to bear witness, and then transform that powerful listening into action.

Thousands of people get up and do this every day for one compelling reason: they want to make some aspect of the cancer experience better for someone else. I hear this time and time again. It never ceases to move me, in the same way I'm moved when families line the roads of a charity rides -- and clap. This speaks to what we are all made of more than anything I know.

We need every voice possible in the national and -- with thanks to the Lance Armstrong Foundation -- global dialog on cancer. The more we know about each other's perspective the better off we all are.

As a co-survivor both of my parents and a much-loved uncle had all died of cancer by the time I was 33. As a co-survivor I felt that bolt of lightning fear when my husband was diagnosed with melanoma the first time, then when it recurred. But as I survivor, what grew in me was hope. The hope that together we can defeat this illness called cancer. The hope that together we can speak up for change. And the best possible hope that -- if anything else -- we can discuss all of this in friendship and love.

Thanks again to Marie O'Connor, for her post on Journeying Beyond Breast Cancer.

Monday, September 28, 2015

One of my other ailments

No today's post is not about my cancers. It is about one of my other ailments - rheumatoid arthritis. This is the ailment that makes my hands and feet hurt and getting out of bed in the morning a bit difficult. As opposed to rheumatoid which makes my whole back hurt or my degenerating disks which resemble an ice pick in my spine when its cranky or my left hip bursitis which also can remember an ice pick. (And I am on all the good drugs.)

The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.

However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.

I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).

So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!

Sunday, September 27, 2015

A warning

Please brace yourself for the annual onslaught of pinkification in the month that starts on Wednesday, formerly known as October but know is Pinktober.

Pink is not the new black. We do not need a world wrapped in pink. Buildings lit up in pink do nothing. Football players dressed in pink do nothing. Regular items, including kitchen utensils, trash barrels, clothing, changed to pink do nothing. We are all aware of breast cancer.

If it makes you feel good to pay for something pink, please read the fine print. The advice to all is to do your research before donating to a cause to make sure you know how much is really going to the cause. However if you are in a store with a huge display of somethingfabulousinpink and you succumb to the pressure and decide to purchase it, please stop, breathe and read the fine print.

If it says 50% from all profits go to somepinkfund, put it back. What that means is that 50% of the manufacturer's profit is probably some tiny amount. For example, if the item costs $50, the wholesale is probably around $20-$25. The manufacturer probably sends it to a distributor who marks it up another 30%. So a quick shot at doing the math means that the manufacturer sells it for around are around $15 for the $25 wholesale item. And the manufacturing costs probably are around $13. (Note these are rough estimates but I do work in marketing and at a distributor so I am probably in the ball park to give you an idea.) So the 50% of the profits are maybe $1....

You are better off buying something you would prefer that is not pink and sending a check to your favorite charity.

Besides that pink item will probably clash with the rest of your kitchen and will get hidden away.

So skip the pink bandwagon. If we stop buying pink stuff, they will stop making it (some day....).

Left Behind

Many of you know about the recent loss of a lovely friend and family member to metastatic breast cancer.  She was 55.  Her first grandchild is due this January.
        The cruelty of cancer is relentless.
        My friend had access to great care and the mind-bogglingly expensive 'designer drugs' that did little to stem the tide of her cancer. They didn't improve her quality of life, either.  In fact, treatment further weakened an already impaired immune system and ultimately she died of pneumonia after three weeks in the hospital.
        At her memorial service this past Friday the Seattle sky was cloudless.  Many of us were too warm in fall clothes but there was a lovely patio adjoining the reception area so we stood out there, remembering, laughing, letting tears flow, talking about our dogs and the weather.
        There was a box with programs and next to that, another one with pink ribbons and pins.
        I hesitated.
        The hesitation, in and of itself, infuriated me. I didn't want the politics of cancer to intrude on this quiet, private evening. But that is what a pink ribbon has become: a mixed signal. Where it may have once stood for hope and advancement, it now also represents commercialization and 'branding' (a term I've come to dislike) that has absolutely nothing to do with or for cancer.  That simple ribbon, which I wore proudly when diagnosed in 1998, is now seen to mask the darker realities of cancer: treatments that don't work, the sorrow of lives cut short.
        But the people who put the ribbons out had no idea about mixed messages or health culture.  So I put one on my collar.  And as soon as the service was over I left it behind.
     
Monday, September 26, 2011

ambiguous ambivalent

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.

Saturday, September 26, 2015

Non-helpful medical tests

A few weeks ago I had a sleep test and then an elbow MRI for separate issues. And the results? Nothing, nada, zip, nil. For both.

My PCP ordered the sleep test to see if I have apnea or other issues which may be interfering with my sleep. She said in addition to apnea, it can diagnose all sorts of problems. I did not sleep through the entire night of the sleep test even though I had taken an Ativan to ensure that.

And the results say 'no apnea' and nothing else. I asked my PCP about it and her suggestion was talk to behavioral (psychiatry) medicine about it and/or come see her when she has an opening. I am doing both.

Since I was headed to my meds therapist yesterday, I asked her about it. She said to try mild sleeping pills and take half a tablet when I can't sleep. And I can take up to two a night if needed. I don't remember what they are but will pick them up later today.

I also have an appointment to see my PCP in November. The problem with not sleeping and having RA and fibromyalgia, that cause fatigue, I need to get more sleep. And then I can't sleep. Which really sucks.

And my MRI, as I think I said previously, says it shows some bursitis but my doctor disagrees.

Aren't these helpful? Not really.

What Are Your Plans Today?

WOW! Advocates for the Lance Armstrong Foundation are some of the most ardent, dedicated and generous that I've ever seen.

Here's a match made in heaven that's good all day Saturday, Sept. 26.

You can have a custom tooth whitening procedure performed for free through a "Share a Smile Foundation Charity Day" sponsored by Dr. Ray McLendon. One hundred percent of your donation with be donated to the Lance Armstrong Foundation.

Then Dr. Dave Holsey, a super advocate for LAF, will match your donation and contribute to my ride!

The usual charge for having your teeth whitened is $350. Donations of $100 and more are strongly encouraged!

To make this happen call 281-587-4900. Tell them Jody Schoger sent you. If you'll send me a photo of your beautiful new teeth I'll post on Twitter and on this blog.

Dr. McLendon's office is located at 112 Bammel-Westfield Road.

Friday, September 25, 2015

I'm reading

Earlier this year the movie, "The Fault In Our Stars" came out. Everyone raved about it. I wasn't sure. I never saw it. But I did sign up in the library to read it. I was something like 453'rd in line to read one of 20 copies.... I figured it would take a very long time.

And Tuesday I got the magic email that finally there was a copy available for me. Tuesday night I downloaded it and started reading. And reading. And reading. I read some more yesterday. And even more last night. Its only 200 pages but I have been busy so I haven't been able to sit down and read for a few hours.

I am most of the way through it at this point. I know what happens at the end essentially so you can't really spoil it for me but I do want to read the rest.

What do I like about it so much? Well the insights into life with cancer. I can relate to lots of them. You know all that stuff that gets donated to cancer patients? They call them Cancer Perks. You know everything from the free hats for bald patients to the autographed sports stuff from athletes.

I love the vocabulary introduced throughout it. Its kind of teenageresque but I can relate. The protagonist (fancy word this early in the day) had thyroid cancer which has made a nice colony in her lungs. If you haven't walked the walk, you may not get it.

But I digress. I plan on finishing it. I may reread it (I have two weeks and I think there are now less than 200 people on the waiting list for one of the 20 copies). And I want to do a little more research. I think the story is somewhat based on a real teenage girl and I want to find out more about the author to see how they managed to write with such insights into cancer land. I might even watch the movie sometime soon.

But in the meantime, I will keep reading and I recommend it for anyone in cancerland.

Another fork stuck in the road

I wasn't going to blog about this because I wanted more facts. But I think everyone needs to see how stupid dumb breast cancer controls you. Your mind and how you think. Mainly your body and how it reacts to the estrogen in it. In the past 5 days I have had person after person say "Aren't you glad it is over?" "You are lucky it was only breast cancer" "Now you can enjoy the holidays". So I need to vent.

It is NOT over. I have had a nodule on my thyroid for years that has been watched  (not very good but still watched). They have aspirated it a couple of times, this is code for sticking a huge friggin needle into my neck and pumping out liquid without numbing it, yes it sucks as bad as it sounds. It has always been fine and honestly I never thought twice about it. OK, maybe a quick thought entered of some crazy ass disease but then thoughts of dinner or True Blood took over, I have ADD a little. Now what was I talking about??? Oh right, so my uncle suggested I get blood work done for my thyroid, well that is never cut and dry so a sono was put into play. The results are in people and..... There are 5 more nodules in addition to my 1, it is probably nothing but guess what?? I have stupid dumb breast cancer so whenever there is shit like this you worry. Especially, when "we have to rule out cancer" (this is said in my Darth Vader voice, makes it funnier to me). Really it is probably nothing but the thought of another MRI makes me sick. Like I have stated  I do not enjoy laying still none the less not talking and now add that "BOOM BOOM BOOM" to it, UGH. The the dye crap they inject that makes my equilibrium off (ok more so than normal). If only it was Boom Boom POW of the Black Eyed Peas:) Off to the Thyroid Doctor today, let the question and answer and question games begin.

Lucky to have breast cancer??? Tell that to my 10 year old who sobbed the night before my mastectomy. Or to my husband who hated seeing me in pain. Better yet to my friend who had to have her expander taken out because it leaked, I am sure that she thinks she is so fucking lucky now. Or those people who have lost their life to stupid dumb breast cancer. It was not luck I got stupid dumb breast cancer, it was just what I got. I am not lucky that I got the "easy" cancer (cause my life has been sooooo NOT easy since May) it is just what cancer I got and I am dealing best I know how. Luck is not being played here, being healthy is. Every cancer is different for everyone, there is not luck in cancer.... it's fucking cancer people!!!

Enjoy the holidays, huh?? I get my implants in right before the holidays then meet with the GYN oncologist right after the holidays. Oh and I get another MRI, PET scan and blood drawn too for my 6 month check to come on say it with me "rule out cancer". Not enjoyable, BUT I will find a way to party do not worry. I am not saying that this is horrible rotten life and I will not get through this because I will, wearing heels and a smile.

You have to understand that cancer opens you up to so much that even going to the dentist is stressful, I am sure there is tooth cancer. It puts worry in your head and fright in your heart. I mean if something happens to me will Tom feed the children over the sink or will he use actual plates??? This is so far from over this is just my life now. It is not lucky or easy but doable especially if the 'cancer perks" keep rolling in. I am not stupid dumb breast cancer and it certainly is not me. It is just what is going on with my body and I fulling intend to .......
Hope you join me as I do just that. It is going to be a great show cause I have some serious back up!

Personal P.ink

I do not normally do this but this is a project I really believe in, like completely! Check it please!! I was even part of their inspirations, awesome right? 








am not a breast cancer expert, but I do know that breast cancer takes the control away from each individual. My name is Jillian, and I am here on behalf of P.INK because we have launched a day where we can give women the opportunity to take backsome of the control they lost. Our first annual P.INK Day is being held on October 21, 2013 in New York City and we are linking 10 very talented female tattoo artists with 10 survivors who have undergone mastectomies to cover their scars, and/or adorn them.

I know that tattoos cannot erase that time in these survivors lives, but my hope is that they do provide a sense of healing for moving on and give them something to be excited about when looking at their own bodies.

Our hope for P.INK Day, is that this becomes an annual event to not only give women the chance to get a free tattoo, but to raise awareness of this healing option, so that in the future, all survivors, anywhere, can seek skilled, experienced artists who can help.

Our plan is to make these ladies feel as comfortable as possible and embrace this time they have to take back control of their lives and move on with something as beautiful as a tattoo.

So, I ask you today, to please help us make our first P.INK Day possible, so we can continue to change the post breast cancer lives of many women across the world.

Please make your donation here.

And if you happen to be interested in getting a tattoo in future P.INK Days, please send us an email at help@p-ink.org.

Also, help us spread the word:

www.facebook.com/PersonalInk

www.twitter.com/personal_ink

www.p-ink.org




Incurable? Not so fast. Learn what these super survivors know have discovered

Tami Boehmer and her daughter, Chrissy. 

“Hope is the thing with feathers that perches in the soul, and sings the tune without words, and never stops at all.”
n  Emily Dickensen

When my brother’s prostate cancer recurred recently a kind friend said he’d hold my brother “in the light.”  The imagery and thought guiding it was beautiful to me and gently reassuring.  Powerful, too, as though through deep meditation and prayer the space we inhabit might actually change. 

Does that give you room for thought? If so then you are the kind of survivor who will both benefit from and marvel at a gem of a book by Tami Boehmer, a metastatic breast cancer survivor who transformed her own diagnosis into a search for “super survivors” – men and women who faced a difficult cancer diagnosis and are still here to tell us what they’ve learned along the way.

Just so you know, I rarely use the word miracle and am very well aware, as we all are, of many men and women who were miracles to us but have died of miserable cancers, anyway.  From Incurable to Incredible is from the here and now, not from the land of illusion or the smarmy, Suzanne Somers land of science.

Instead, Tami opens up the door and introduces to a group of compelling people doctors can’t categorize.  Some you might say, are even past (and delightfully so) their expiration date.   Then she steps backstage and lets them tell their stories, 27 different stories, 27 different stories of hope, 27 drastically altered lives, 27 different people of all ages and types of cancer.  

Following introductions by Bernie Siegel, MD and Livestrong CEO Doug Ulman, Tami writes about her experience with breast cancer and the journey that led to the book.  In 2008, the 44-year old mother and PR professional found that her breast cancer had metastasized to her liver and lymph nodes in her chest.   

There is no pity.  None.  There’s no sentiment or navel gazing.  She knew that to survive she needed to get past the statistics she was reading.  She called a volunteer chaplain from her church who had a rare and incurable cancer but who was living well with it. 

“Tell me everything you’re doing,” she writes about that conversation, “I’m taking notes.” 

Good notes and good questions.  What contributes to beating the odds?  What do these special survivors have in common?  She identifies eight different factors then organizes each survivor’s story within the categories -- purpose, attitude, support, perseverance and faith.  The stories are rich, by people who made the most of the resources available to them. They took on their own care and were proactive.  All had some kind of faith.  None of the stories are easy.  But through means not definable by any us there are transformations many times over.

“Cancer has given me permission to live the life I should,” said Dave Massey, 51, a two-time Stage IV germ cell survivor.  Like another woman, who joked that her Irish mother “would have killed her if she died,” Dave’s humor remained intact.  When he realized his doctor’s MO was “when in doubt, cut it out” and the doubt pertained to amputating both his legs, he found treatment elsewhere.  Today he runs marathons. 

You will recognize some the survivors from the work they’re doing now, like Jonny Imerman, you’ll meet some new ones. You will love all of them. You’ll see yourself, where you rose above your own diagnosis, where you can still learn, and how much all of us can find to celebrate.

When we learn to nourish our lives, we pay attention to our hunger for living. 
                         --  Bernie Segal, M.D., from the introduction, From Incurable to Incredible

(Disclosure:  Tami Boehmer provided me a review copy of From Incurable to Incredible.  Printing costs were provided by a private donor and ten percent of the author’s proceeds will go to the Lance Armstrong Foundation)



Have a beautiful weekend,
Jody

just skip the anesthesia. he's tough.

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

True October

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” Margaret Mead

It’s coming. I’m not talking about Christmas —  even if the ornaments are out already — but the October pink that will soon cover the earth. Trickles of pink already started appearing in August. Within a few years’ time I expect we will see pink streamers competing with the red, white & blue bunting at July 4 festivities.  

Breast Cancer Awareness Month, initiated in l985, is now a commercial mainstay of the cancer scene — the pharmaceutical companies, hospitals, cancer centers and nonprofit organizations that aim to prevent, treat and cure this awful disease. And yes, here we are almost 30 years later, same month, hearing some of the same talk about prevention and early detection. It seems to me that everyone is aware of breast cancer.  Few understand it and even more I think, are afraid of it than ever before.  

Fear doesn’t help. Early on I tried to shrug off my initial, Stage III diagnosis with my oncologist. I wanted not to have cancer. “But this is the good cancer, right?” I asked him. As always, he told served up truth on a platter.

“There are no good cancers.”

Then when my cancer metastasized I was compelled with that same urge. I wanted to know that the metastasis creeping around wasn’t particularly dangerous. Or threatening. Yet. I wanted out of the Stage IV group and into the category of women who die with — not of — breast cancer. 

What can I say.  A metastatic diagnosis temporarily leaves you senseless.

Since those early days, between what I’ve experienced with my disease and seen in the metastatic community, my thoughts and perspective have inevitably changed again. 

From where I’m sitting the pink parade can go on without me. Games can take place. Eventually November will arrive. The issue isn’t whether or not awareness helps but the kind of awareness we need to advocate for, the kind of awareness worth the time you have here on earth. Coping with October is about focus, not on noise or commercialization, but on the very real work that must be done now.
* * *

Almost one third of all women and men diagnosed with early breast cancer — there are approximately 1.6 million new cases a year worldwide*— will go on to develop metastatic disease. Metastatic or Stage IV illness, where cells leave the original tumor and establish new outposts in the skeleton or visceral organs, is not curable. It can be treated in a variety of ways that range from the mildly (expletives deleted) disruptive to a life-long balancing act with chemotherapy and its cumulative, toxic impact. The grim and often-repeated survival statistics are not inspiring nor do they bear repeating. Prognostic stats use information from the past to predict how you will do in the future. But as any oncologist can tell you, you can have five women with biologically similar cancer, they can have the same treatment and you can still have have five completely different outcomes due to the individual characteristics of each women and how her disease reacts to treatment. Treatment fails too many. 

If we are to reach a point where breast cancer is 1) turned into a chronic disease for all subsets, from the seemingly indolent to the shockingly aggressive and 2) treatments are stripped of the toxicity that renders a patient’s quality of life unmanageable then advanced breast cancer must have more research and education. 
Joyce. Part of treatment for
thousands yearly.

Late last week the second international congress on advanced breast cancer  — ABC2 — issued new guidelines on advanced and metastatic disease with an urgent plea for “high-quality research” for this “historically neglected population.” These guidelines bring the best evidence to bear on advanced disease, including the recent trials on everolimus (Afinitor) for hormone-positive metastatic disease and pertuzumab (Perjeta) and trastuzumab emtansine (Kadcycla) for HER2-positive disease. It also details treatment guidelines for hormone positive, triple negative, hormone positive and locally advanced breast cancers (LABC). 

"Advances in survival outcomes for ABC, particularly MBC, have been frustratingly slow," the report notes. "MBC remains a virtually incurable disease and LABC patients vernally have a poor prognosis with a high risk of distinct recurrence." 

The report is significant for many reasons. To reach consensus on anything related to breast cancer treatment in and of itself is remarkable. The international group of health professionals, advocates and researchers is the first to define treatment guidelines and advocate for metastatic disease from a global perspective. The report is clear, distinct
and bold. The guidelines take an additional step and pinpoint where “…research efforts are urgently needed.” They include:



- Patients with metastasis to the liver, pleural cavity or the skin; 
- Men with advanced breast cancer prescribed aromatase inhibitors  (exemestane, letrozole, or anastrozole); 
- Patients with advanced HER2+ disease who relapse shortly after treatment with trastuzumab (Herceptin) and, 
- The role of surgery for the breast tumor when the cancer has already metastasized.

The report also stresses the need for multidisciplinary, international trials and the education of health professionals on the application of the new information, psycho-social support, early palliative care and patient engagement -- all the things empowered patients stress.

In fact the steady work of advocates stressing the unique clinical needs of advanced and metastatic patients shows. The typical scenario is to test new drugs on metastatic patients. Then, once efficacy is established, there is a quick movement to test the treatment in earlier stage patients. While moving trials to treat earlier stages is as it should be, the continued treatment of the metastatic patient with that drug and others is left unclear. "So this is what we plea for, that yes, once you have enough data, move to the early setting, but remain and keep investing some effort in understanding how best to treat the advanced breast cancer patient. They are one third of all breast cancer patients patients and they deserve that," said Professor Fatima Cardoso, lead author and co-chair of the latest guidelines. 

"Emerging drug research and treatment guidelines work hand in hand," said renowned advocate and author Musa Mayer. "As the research discovers new treatments to prolong and improve life for people living with mets, the guidelines help us use the tools we have today as broadly and accurately as possible, clarifying for governments and payers all over the world what resources are basic for optimal care."

I could probably continue to write about all that's contained in this report for the rest of the day. I've read it a few times now and continue to learn more. But I'll close with the thought of "optimal care" for every person diagnosed with breast cancer, from Minneapolis to the Maldives, Tuscaloosa to Tanzania. That is the truth I see in October. The ground swell to bring metastatic breast cancer issues to light is here. Raise your voice. 

Notes: 

The first International Consensus Guidelines Conference on ABC (ABC1) was held in 2011. ABC2, which attracted some 1100 participants from 71 countries, took place last November in Lisbon. The conference was organized by the European School of Oncology (ESO) and the European Society of Molecular Oncology.  A list of participants is available in The Breast. 


1. “Experts issue plea for better research and education for advanced breast cancer,” September 18, 2014 medicalxpress.com 
2.  Annals of Oncology (online) “ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2), September 18, 2014.  Published in The Breast  September 20, 2013. 


Thursday, September 24, 2015

Cancer causes

Let's see how I do on this one.  The American Association for Cancer Research just announced the preventable causes of cancer in the US.

  1. Tobacco - I quit that a few years back
  2. Cancer made me fat. I wasn't fat until breast cancer treatment.
  3. I have no idea about cancer causing pathogens.
  4. I go to the gym 3x each week and get 1 hour of cardio each time followed by 30 minutes of weights, machines, and stretching.
  5. Fruits and vegetables every day. A minimum of two pieces of fruit by noon followed by salad and/or green vegetables with dinner. 
  6. I have never been to a tanning salon but do go to the beach. I don't remember the last time I got a sunburn.
So let's go back to the 'why me?' question.... No let's not. Anyhow more discussion on this can be found here. I'm doing the best I can.

Wednesday, September 23, 2015

k. and the colossal colon


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.

housekeeping

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!


The schedule juggle

Let me preface this all by saying I work part time with complete flexibility in my schedule and I can come and go as I please.

All I was trying to do yesterday was to schedule three fifteen minute appointments for a medical massage for my sore hamstring. The goal was one yesterday, one on Thursday, and one next Monday. The result was one yesterday, one tomorrow (Wednesday) and one October 12. To be fair, I will be out of town for a few days which complicates the matter. And the tech who does the massages only works Monday through Thursday.

I couldn't go Thursday because I already have to work and have two appointments in the afternoon. Tomorrow worked but I had to reschedule a different appointment and move it to today so I could fit it in. Next week the only times he had were ones when I wasn't available.

That is just this week. My schedule is not what we call empty and relaxing with a part time work schedule. I am always running around some place. Today is work, farmer's market, Dr appointment, and hair cut. I will leave at 730 am and return around 530.

Then sometimes when I am having a 'bad spell' (doesn't that sound antiquated or something), I just ditch everything and hibernate. That is what I did on Sunday. After our party Saturday, I woke up with bags under my eyes....

My body doesn't tolerate the schedule juggle and ensuing long, full days, any better than my calendar does. And every little change is complicated for both.

Tuesday, September 22, 2015

Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:


And which are the top states with the highest rates of breast cancer?
  1. New Hampshire (141.7 incidences per 100,000 people)
  2. Massachusetts (135.5)
  3. Connecticut (135.2)
  4. Minnesota (135.1)
  5. Washington (133.9)
I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.