And how was your weekend?

Sometimes I don't blog about breast cancer but just about life. This is one of those times. My husband and I are convinced that the planets are in retrograde or something or there is a cloud of doom over our heads.

Saturday we went to the beach with my sister, brother in law, brother, niece and nephew. We had a nice big cooler with wheels that my nephew and brother were dragging down the beach. It was packed to the brim with water bottles, cans of seltzer and ginger ale, cut up fruit, ice, and Italian ices in individual cups. At one point my brother picked up the cooler and carried it on his shoulder over the soft sand. He went to put it down and..... dropped it right in front of the life guard chair.

We scrambled and put everything back in. So now there was ample sand included all over everything. We enjoyed the beach, consumed much of the cooler contents, headed out to dinner and then home. The cooler went into the kitchen where I started cleaning the sand off everything. Then I found that one of the Italian ices, a blue one to be precise, had melted and leaked 3/4s of its contents all over the inside of the cooler. So now everything was covered with blue, sticky, sugary, sandy water.

I took everything out of the cooler and I went to dump the cooler in the driveway and spray it out with the hose next to the front door. My husband, unbeknownst to me, had started the sprinkler on the front lawn and I couldn't get outside without getting soaked. I turned around and headed to the bathtub.

And dropped the open cooler in the front hall with its blue, sticky, sugary, sandy water all soaked into the 100% wool carpet runner. It was sloshing around.

I grabbed towels and started cleaning. My husband came down and helped. The carpet and the sandy, sticky, sugary, blue inside cooler went out on the porch for the night. I put it on the top of the car in the sun and sprayed it with water yesterday so I hope it doesn't become an ant magnet with the blue sugary, sticky water. It is continues to dry in the basement. That was plenty to clean up and still more to do.

Then this morning...

I was sitting on the bed next to my husband drinking coffee, reading email, and dropped my coffee cup in my lap on the bed. My laptop was splashed. My lap was soaked. The sheets and bedding are off the bed and going in the wash. I hopped in the shower and removed the coffee from the lower half of my body. But I have a couple more loads of laundry to do today. And only enough detergent for one more load.

How was your weekend? I hope it did not leave a debris field like this resulting in lots of laundry.

I'm Had Enough: Half of BC Survivors Stop Tamoxifen Early

This is a headline that quadruples my empathy factor:  "Half of breast cancer patients stop taking hormone drugs."
      I've been there.  I did that.
      And damn, I'm here to tell you about it.
      But first, here's what was reported, from USA Today by Liz Szabo Half of breast cancer patients stop taking hormone drugs and from the American Society of Clinical Oncology Fewer than half of breast cancer survivors adhere....  from a study of 8800 women with early-stage breast cancer.  Researchers found that only 49 percent of the women completed the recommended regimen for tamoxifen, aromatase inhibitors or both.
      It boggles my mind.  Less than 50 percent of women took a proven treatment that cuts the risk of recurrence in half.
     The findings resulted from an analysis of automated pharmacy records of women with hormone sensitive breast cancer, Stages I - III.  What's especially troubling is the group with the lowest adherence rate was in the group of women under 40.
     We need to have some serious conversation here.
     One of the physicians quoted in the article pinpointed to me the huge disconnect between pharma, epidemiology, oncologists and survivors.
     "We were surprised to see that so many young women stopped treatment early..." said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study.  "Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment they need to take their medications on time and for the full duration."
      Yes.  That's a problem.  Breast cancer treatment (and other cancers, of course, the breasts don't own everything) is like running consecutive marathons.  In my case marathon one:  FAC.  Marathon two: a string of surgeries.  Marathon three:  Taxotere.  Marathon four:  radiation.  Marathon five: tamoxifen.  The first four marathons are time limited.  You're going to recover from a surgery.  The effects of chemo wane until you go in for the next dose.  Then you repeat the cycles until all the doses have been received.  Radiation is x-number of days.
      But tamoxifen lasts for five years and its effects, especially on younger, premenopausal women can be and are often severe.  For the clinician side effects are lists of words on paper.  For survivors side effects mean that the thinking disarray, exploding hot flashes, joint pain and swelling make living and working very, very difficult.
      I remember sitting in my office many days wondering if my mind would ever process information efficiently again or what life would be like without hot flashes that started somewhere near my belly button and burned all the way up through my abdomen and thorax before exiting my head until it felt like every artery was about to explode.  Only a caricature image of my head with steam coming out my ears helped me cut through the discomfort.
      So after three years, with the agreement of my oncologist,  I stopped taking Tamoxifen.  He told me that the first three years following diagnosis are critical.  I made it through those three years.  I had already started intense exercise to combat symptoms of menopause and I continue to this day.  Some hot flashes still manage to squeak through.  I'm still hot most of the time.  But my thinking did not completely clear until I stopped Tamoxifen. I was so, so glad to have me back.
       The point of intervention:  let's find better ways to help young women cope other than lip service.  Let's stop denying that Tamoxifen is such a difficult drug to take, and let's get some alternatives working.  If lumpectomy and radiation are effective cures, and a woman's "recurrence rate" is say, 10%, can she take survivorship head on and manage that risk with lifestyle interventions and diet?  Doesn't that "prescription" reduce recurrence rate as well?  What if the woman is 39?  And her neighbor 59?
        I'm left with as many questions as ever:  who is following the women who did not take tamoxifen?  Will we ever know how they fared?  Do we want to know?  My cancer was such that I left no stone unturned.  But this report tells us that the case is otherwise for many, many women.
       How do you respond to a friend who skips this treatment?  

Caroline's version of the future of breast cancer research

We hear lots of about different breast cancer research studies. We always hear lots about different breast cancer research studies. There seems to be a never ending barrage of breast cancer research. and the research always seems to end up with some combination of the ofllowing

• More research will be needed
• It will be years before we know the real results
• It gets more and more personalized and focuses on smaller and smaller groups
• It will always be waiting for more approvals from the FDA or other organizations
• It will always get more and more expensive.

So my version of what we will hear about the future of breast cancer research:

• Breast cancer research will start focusing on individuals or families.
• The patients and their families will die off before the research is ever finished so it could cure them.
• They won't be able to afford the medications anyway.
• And the needed approvals will always be off in the distance.

This is my cynical side talking. You can also substitute any different ailment for breast cancer here. While there has been great progress, it always seems like we never quite get there. Or maybe I'm just waiting for a cure....

The truth is not inthe number of years for cancer patients

Last week a friend  announced rather publicly on Facebook that she was celebrating 34 years since her cancer diagnosis. I think I have mentioned her in posts previously. My first cancer's diagnosis is 33 years in August. The difference is she was stage IV ovarian cancer in 1980. I was stage I thyroid cancer in 1981. But am only at 7 years out from my more troublesome stage II breast cancer.

At first glance those number seem good. I mean we are still here. But they don't talk about the stress and the emotions behind it. We now have had years to learn to deal with it. By now being more open about celebrating, it is clear we are both doing that.

She has clearly defied the odds. But the numbers do not tell the tale of the life behind it.So we are still here but the truth is not in the numbers.

Those breast cancer women

When I started the Race for the Cure team first it was for my grandma who helped raised me, then for my friend Lisa, then my friend MaryAnn, then it became about "those breast cancer women". I thought about all the ways breast cancer changed a woman. Those curves and cleavage that show her beautiful, womanly body were now going to be fake or gone. The breast milk that sustained her babies was now tainted with a disease. The nipples that are so exciting were going to lose all feeling and even be removed. The fact that no 2 woman have the same breasts making her unique were now "what size do you want?".  The fright that builds with all the doctor appointments along with physical scars that breast cancer leaves, too. I felt like those things helped define a woman. Then I got stupid dumb breast cancer and I was enlightened. Breast cancer does not define us it refines us. The mastectomy shows the courage that "yes I had breast cancer and kicked it OUT". The ducts that held the milk are gone showing the strength to fight this disease. Who needs nipples? Get rid of them showing the hope that there will be a cure! The scars show the battle and the fighter, reminding us that healing has begun. It is ok to be scared being brave is doing what you have to even though you are scared.  Stupid dumb breast cancer will never define or have me because I have courage, hope, strength, plus I am a fighter. Even if there is chemo it does not matter, that is when my family and friends take over and give me courage, strength, and hope reminding me I am a fighter.

This advertisment was brought to you by the team leader of CURE OR BUST, who is battling stupid dumb breast cancer, we are a proud CNY Susan G. Komen supporter

mind blown

 PAB2011 group photo by Maurizio Ortolani, uploaded to flickr by Martin Jones.

A chance encounter on Bank Street with my friend Andrea Ross led to a plan for a dog walk, which led to a conversation about "PAB", which led to me having my mind blown.

The conference is called PAB 2011 (short for Podcasters Across Borders), and is for anyone who is a creater of "content" of any kind, using any medium. You don't have to know a thing about podcasting to attend, just an open spirit and a readiness to share and absorb ideas. It took place this past week end (June 24-26) and my brain is still very, very full.

This year's theme was "Your story needs to be told. Well." As with every year for the last few, the venue was the wonderful Fourth Stage of the National Arts Centre (no fluorescent lights!) and the setting was intimate. There were two longer keynotes and many more 5 minute "jolts" (this link is to Andrea's amazing jolt from last year, which I have quoted many, many times), juxtaposed with 40 minute presentations and questions from the audience.

There was so damn much to take in and almost as much to tell that I'll be brewing blog posts for the next few days (which will make a change around here. I've been an unmotivated blogger of late). For now, I'll just say that my brain is resonating like the inside of a bell.

I am very, very grateful. To Andrea for her friendship and inspiration, to Mark and Maureen for donating a ticket they could'nt use (and asking for nothing in return) and to Mark and Bob for concocting, creating and coordinating this indescribable thing that is PAB.

Poverty As Carcinogen

Proboscis Monkey.  He has enough to eat.
25% of America's children don't.

Last night my sister and I added another narrative layer to our lives -- we started to text each other while watching NATURE on PBS, she from her living room across town, I from mine. 
        The particular episode that sent us into into peals of laughter was the "World's Ugliest Animals," of which the unusually endowed proboscis monkey (left) was one example. Our goofy texting and commentary was in stark relief to this earlier exchange of messages:   


        R u watching 60 Minutes?
        Yes.  Crying
        Me too
        God.
        Feel so selfish.
        I know.  I felt the same way. And I keep thinking about all those wall st. types with all their billions and I think, really?  It wouldn't take so much would it?
        No. The change on their bureau would do.

        We were talking about a Scott Pelley's story about a country where almost 25% of the children are in poverty. That country is America.
        To add to the irony, or more accurately, the heartbreak, Pelley's interviews were conducted in Seminole County, Florida, adjacent to the 25,000 acres Walt Disney World occupies. Even Dickens couldn't have cooked that one up.
        The social and ethical ramifications of hungry, homeless children is enough to take in.  But there's more. There's always more.
        More than twenty years ago, Samuel Broder, MD, one of the physicians who developed some of the first effective AIDS treatements (AZT) and former head of the National Cancer Institute, said, "Poverty is a carcinogen."  This was pointed out in a moving and powerful post by J. Leonard Lichtenfeld, MD, deputy chief medical officer for the American Cancer Society and known simply as @DrLen. 
        Yes, being poor, hungry, un- or undereducated puts one at significant risk for cancer. While the largely well-educated (yes, WASPS like me) professional classes can afford the luxury of debating whether drinking out of a styrofoam cup or using cosmetics will up my risk for cancer - we are simultaneously living in a society where the largest number of children since the Great Depression are growing up hungry; many homeless.  There are some things the greatest cancer advances ever imagined can never fix, and this is one of them. Only we can help fix this, by advocating for not just equitable health care, but a more equitable society where children don't have to worry that they are costing their parents too much money, or about not wanting their friends to know that their father stood on the street corner holding a sign.
        Cancer is social. Cancer is economic.  Cancer is political.
        As Dr. Len wrote,  "If we are serious about reducing the burden and suffering from cancer, why aren't we paying attention to those most in need?"
        Why indeed.  Last night these two separate stories -- the 60 Minutes feature and Dr. Len's blog -- ran through my thoughts and eventually had a head-on collision.  
         And I can't let it go.  

Further proof Dr Google isn't very good

Another story has come to light on how Dr Google isn't the best adviser for medical stuff. It turns out most people use Wikipedia or Web MD for information on drugs. A new story in the New England Journal of Medicine published recently talks about it.

'"Despite debates over its credibility, Wikipedia is reportedly the most frequently consulted online health care resource globally,” the authors write. “Wikipedia pages typically appear among the top few Google search results and are among the references most likely to be checked by internet users.” Wikipedia, along with Google and WebMD, is where more than half of all Americans turn to for health information, according to the report. 

Researchers found that when the FDA issues a drug safety warning, Google searches about that drug increase 82% on average in the following week. Wikipedia pages about the drug see a 175% increase in views on the day of the announcement.'

The cause for concern is that the FDA does not issue drug safety warnings and update Wikipedia - its left to the general public. WebMD is a little better but it is not proactively updated with things like drug safety warnings. If you need that kind of information you need to follow the FDA on Twitter. So the call is to get the FDA to reevaluate their social media presence''.

I'm not sure the problem is with the FDA's social media presence than there is with that fact that so many people go to Wikipedia for medical information. Wikipedia has credibility issues. It is not based on any specific information but on updates from the community. I never use Wikipedia for medical stuff because I do not trust it.

Dr Google insists in on displaying Wikipedia results prominently in so many search results so of course it is used so frequently. I think we need to learn to use more common sense and switch from Wikipedia to WebMD and other more credible sources.

Better than a sharp stick in the eye

Or whatever that saying is. This morning I am off to another medical adventure. I love these medical adventures that involve needles first thing in the morning. Well its not first thing first thing. I get breakfast first after sleeping in a little bit.

The reason I am having this is because I have a bony growth on my neck between C4 and C5. As a result I have a pain in my neck and problems with my shoulders and top half of my arms. It lines up exactly with this picture below.

I don't have pain in my arms and shoulders but they don't seem to work always and are uncomfortable. So after discovering this new issue which is life long, not curable by surgery, but only treatable for the symptoms. So I am off to have this wonderful procedure this morning.

I can't wait. It sounds like so much fun.I even watched the video after convincing myself it was okay. But then I'll lie around and be justifiably lazy for the rest of the day.

I have something to get off my chest

I am NOT sick so how can this be true??? I feel absoulty fantastic and am looking forward to my work out today, going to Target, and being with my extended family tonight celebrating my cousin's birthday (stay away from the baseball game tonight we are "that family"). If I was SICK I wouldn't be doing those things. People who have cancer are not sick because cancer does not make you feel sick.  It is the surgeries, chemo, radiation that makes them (or I guess me, WTF!) feel like crap. I do not want this stupid dumb breast cancer but I am stuck with it so I have to deal. Well, guess what.....I am not taking it sitting down. I am taking it by working out, eating healthy, being around my family and friends because those things are making me stronger and get me ready for the fight. I am from the North Side (not to be confused with North Syracuse) and truthfully have been in a few fights, so I got this. Please do not treat me like I am "SICK" treat me like the fighter I am who got stuck with stupid dumb breast cancer. Bring me positive vibes, healthy food, a cocktail Cafe Patron on ice please and your lovin' support (the ocasional gift is acceptable too). Then every little thing will be all right.

That felt great to get off my chest now I just need to get rid of these 2 cancer filled boobs and I will be GOOD TO GO! In the words of our friend "You're fine, just walk it off"!

3D Mammography

3D Mammography, also known as digital breast tomosynthesis, has been around for the past few years. Originally I hadn't heard such great things about it but now I have heard more and find it an acceptable addition to cancer screening. Or at least in my opinion, which is what counts for me.

Basically in 3D mammography they take lots of pictures of slices of your breast as opposed to the single image from regular mammography. (Think CT vs x-ray) It takes a little longer for the radiologist to read all the pictures because there are so many of them, but they do  provide much clearer images, better detection, and fewer false positives.

When I went for my annual mammogram a few weeks ago, something I chose not to discuss until I got the results, I had a 3D mammogram. The hospital has added the newer machines in the past year. Their current arrangement is that if you have a doctor appointment the same day, you get a regular digital or screening mammogram. But if you do not have a doctor appointment the same day, meaning the radiologist has lots of time to read all the pictures from a 3D mammogram, that is what you get.

I had decided I see too many doctors and cut back on my radiation oncologist - I don't know why I was still seeing her anyway - and canceled that appointment this year. Some how my surgeons office never scheduled my annual appointment with them, even though I thought I was supposed to be followed by them for life, so I am down two appointments for the year. I will talk to my medical oncologist and my primary care when I see them to make sure I am getting the follow ups I should.

And I learned something, I will have my annual mammogram without a doctor appointment the same day so that I get the 3D mammogram. And my results this year were clean.

a man, a boat and some respite

I was listening to the radio this morning and I heard an interview with a man who was sitting in a boat outside his flooded home in Calgary, fishing. He said that his furnace, freezer, everything in his basement and much of his first floor were submerged in water but he was making the best of it.

"People pay thousands of dollars to do what I'm doing. How often do the fish come to you?" he asked the interviewer. "I can sit and be miserable or hang out like this and keep a smile on my face for a couple of days."

I was quite taken aback with this interview. At first, it seemed like an incomprehensible attitude to have in the face of such tragedy. But as I thought about it, I realized that not only do I understand, I can relate.

I don't actually believe that the guy has been sitting in his boat and smiling for the last few days, or that he's immune in the face of loss. He's just found something, in spite of all that's happening, that makes him happy. No matter what is going on in any of our lives, there is hopefully at least one good thing that we can cling to like a life-raft, something that brings respite while we gather our strength to face all that lies ahead.

I would never choose to have been diagnosed with cancer. I would never wish what I've been through on anyone. But there have been so very many good things - the friends and loved ones who've rallied around, things I've learned about myself and a new appreciation for all the good things - that have sustained me through the darkest times.

I hope it goes without saying that I don't think everything happens for a reason. The floods in Alberta have been horrific and terrifying. This is a tragedy of enormous magnitude.

It's just that this morning I listened to that guy, fishing in his boat while his home was underwater and I felt that I understood him.

treatment week

The VA scandal

I usually limit my posts to topics related to cancer and other health issues but I cannot resist commenting on the VA scandal. It absolutely appalls me that:

• employees were told to fake data and hide deaths
• soldiers who were injured serving their country receive substandard health care
• how wide spread this problem - its not just limited to Arizona.

This is unacceptable behavior for anyone. Why would anyone want to play God and select two gets care? For those of you who were concerned about the 'Death Panels' (remember that idea?) as part of the Healthcare Reform Act should rethink that. Those VA employees who were creating the secret lists and hiding data were playing God with the soldiers.

The whistle-blower in this case should be applauded for coming out and telling the truth about what happened. But there also should be a note made that while she did come clean in the end, shouldn't she have questioned her superiors or gone to another part of the VA - superiors, HR, etc - and asked about being told to lie? Unethical behavior, or even criminal behavior, should not be tolerated by anyone.The claim of 'following orders' does not excuse this at all. If worried about job security, I wouldn't want to work for an organization that wanted me to break the law or work unethically.

I hope that there is substantial reform in the VA healthcare system and our vets are not mistreated like this again in the future. And I hope that criminal charges of negligent death are filed against those responsible.

Finally, it also leads me hope that there are internal audits at all medical care facilities so that this type of behavior can never happen again.

Changing views on breast cancer

Treatment for breast cancer has changed over the past decades. This is a known fact but some of the newest changes are summarized in a recent article in the New York Times, "Outsmarting Breast Cancer". A couple of key points that hit home:

'“The size of the tumor and presence of positive nodes may not matter as much as we thought,” said Dr. Deborah M. Axelrod, a surgeon who directs breast cancer programs at the center. “It’s not even true that if the cancer is metastatic, it’s curtains.”'

While I do not have metastatic cancer, I have long thought that advances in treatment make cancer more of a chronic as opposed to a short life sentence.

'Instead of waiting for cancer to recur in certain high-risk patients, scientists are now developing techniques to outsmart the cancer cell’s aggressive tactics by prompting the patient’s immune system to launch a continuous attack that keeps the disease at bay indefinitely.

I like that one even better - preventing recurrence. Remember an ounce of prevention is worth a pound of cure.

Even lumpectomy could eventually become a thing of the past if these techniques achieve their early promise.'

I really like that. Three lumpectomies later, I am a little lumpy..

'...gone is the simplistic notion that cancer is a disease of abnormal cell division, said Dr. Larry Norton, deputy physician-in-chief for breast cancer programs at Memorial Sloan Kettering. “It’s a disease of abnormal relationships between the cancer cell and other cells in its environment.”'

The cells are hanging out in the bad neighborhood obviously. I had heard this a few years back when I heard Dr Susan Love speak. Bad friends lead to bad things - remember what your mother said about some of your friends?

So change for the good for once.

Doc #2

"The doctor sees all her breast cancer patients at the oncology center" says the secretary.
"Shit I am the BREAST CANCER PATIENT", says the chick with stupid dumb breast cancer.

The appointment yesterday was long, draining, and depressing. They are under construction for the new cancer treatment center and let me tell you it looks so sad. These poor people go down this crazy hall into the bowels of the hospital waiting for Freddy Kruger to jump out to get treatment for hours and end up feeling like a mack truck ran them over. When the very nice receptionist took my info I almost said "this is so depressing for these patients", then I realized I am the patient. I do not do patient well. I do a lot of other things very well but be a patient helllllsssss noooooo. The magazines in the waiting room were dated 2005, I mean come on get us cancer people some updated US weekly.

The meeting with the doctor verified that I do have breast cancer, hmmmm really??? Although it is the best breast cancer you can have, "it is just DCIS", it is still cancer. That is not great and should not be taken lightly. She really would have thought it was a papilloma and says my cause is "rare". I guess I really do have to be different on all levels. This doctor agreed with my doctor and thinks my course of treatment is right. At the surgery the doctor will test my lymph nodes on both sides, checking the level of cancer. They will know then if there is more cancer but still send it out to be checked. There is a 20% chance it comes back negative at surgery then in lab is positive. That must be a fun chat, "sorry we were kidding it isn't negative after all, would you like a barf bag?". The whole  boob then goes off to be dissected and tested (think they send it to FM High School for science class??). After all that they will decide on which steps to take from there. I have to keep chemo in my head somewhere just to be prepared. It is hard up in my brain there are a lot of voices up there and right now they have a LOT to say. If I do not need chemo then yippeee if I do then I will be ready but I will not go there until then. Plus until all the results are in we will not be able to breath any sigh of relief!

I am still in shock and feel like this is some sick friggin joke. I made deals with the breast gods that if I did all that work for Race for the Cure I would go untouched by breast cancer. Stupid dumb breast cancer!!! Cancer does not hold any prejudices it slaps whoever it wants. Please get mammos and do self breast examines, early detection saved my life. Do not be a fool and think "it won't happen to me" cause you are me! Well, I am more fabulous than most but you know what I mean:)

Science of Cancer Survivorship Research Growing

Since my cancer diagnosis in l998 there has been an explosion in survivorship advocacy, research and information for the 11, oops, now 12 million cancer survivors in America - - a number that has tripled during the past thirty years according to a Lance Armstrong Foundation report.

The emerging field of cancer survivorship research underscores what we as survivors can do to enhance our lives and how cancer professionals can help guide that path.

Last week the fifth Cancer Survivorship Research Conference convened  in Washington DC  for two and a half days’ of presentations  on cancer rehabilitation, physical activity and survivorship, survivorship in women of color,  issues for young cancer survivors, and the perception of both benefits and negative changes associated with the cancer experience.   

The opening session, “Physical Activity, Weight Status and Survivorship,” featured some of the findings from Dr. Wendy Demark Wahnefried’s  DAMES (Daughters and Mothers Against Breast Cancer) trial, which recruited pairs (mother and daughter) to look at whether the mother daughter bond could serve as support and motivation for weight loss in overweight breast cancer survivors.  Despite the study’s success – even the control group lost weight in the mother-daughter pairs – future studies would probably be expanded to “mothers, daughters,“ Wahnefried said, “and others. There were some daughters who didn’t want to participate with their Moms.  Next time we’ll cast a wider net.”

Hopefully findings can be applied to this and other programs that help survivors lose weight. A body mass index (BMI) greater than 25 and weight gain during adulthood are both associated with an increased risk for breast cancer, not to mention other cancers and heart disease. 

“We have data from observational studies that physical activity not only enhances survivorship but lowers the risk of recurrence, but we have to back that up with long-term studies,” Wahnefried said. “What’s safely said?  Avoid physical inactivity.”

Ultimately it comes down to cells and chemistry.

In an experiment published late last month in Science Translational Medicine, researchers from Harvard and other institutions used mass spectrometers to analyze blood samples taken from a group of unfit, healthy, and super-fit (marathon runners) individuals.  In each group marked changes in metabolites, which drive metabolism, were activated in as little as ten minutes of exercise.  The metabolites also ignited reactions in other genes, specifically those regulating cholesterol and blood sugar.  (3)  

These preliminary results and others studies like this, will one day show the interactions of exercise, blood chemistry and the immune systems’ ability to fight off marauding cancer cells.

Until then let’s continue to gently support and encourage greater fitness and healthier eating patterns in all our sisters with cancer.

Would you be willing to try a health and fitness program with your Mom?  Or would that bring up too much family drama?  How about your daughter?

Illustration Credit:  Bryan Christie. NY Times Magazine.

Notes: 

1.       1.LiveStrong, Austin, Texas.  How Cancer Has Affected Post-Treatment Survivors. 2010

2.  Rowland, J.H., Aziz, N.M. Tesauro, G & Feur, E. (2001) The changing face of cancer survivorship.  Semin Oncol. Nurs 17: 236-240.
3. Reynolds, Gretchen (2010) A workout for your bloodstream.  NY Times Magazine, June 20, 2010: 16.

Living with in 'The Rule'

We have many not necessarily rules but guidelines and considerations by which we, my husband and I, live. There are the basics, I cook and he cleans up the kitchen. I do laundry and he carries it up and down the stairs. We are generally considerate to each other (except when we choose to annoy one another). And all sorts of other basics that help us live together peacefully for the most part.

However as my health has done its downward spiral, my husband has created 'The Rule'. It is a rule by which I am required to live. It actually has a lot of common sense built into it (so may be he is being smart here). 'The Rule' states that Caroline is not allowed to plan more than one event per day. This means I can't go to the beach and then go out to dinner the same evening. Or I can't go to a day long event and then go out in the evening. I need to plan accordingly.

The reason for creating the rule is to avoid crabbiness. For some reason, he doesn't like it when I get crabby. I just can't understand (insert smirk here).

I have come to realize that this is really about as much as I can do. I look at my calendar each month, I plan accordingly. I work three days a week and shift it around to accommodate doctor appointments and other events. I also go to the gym three days a week. If I work and then go to the gym, while technically being two events, I am okay but I really can't go out that night.

So today I am being sneaky. I met one friend for lunch about half an hour away and then another friend is coming over for dinner. this did not register with my husband as much because he didn't come with me to meet the first friend. So I am sneaking in the second event. But I am lying down now. Everything is ready but making the salad. But I am tired (don't tell him that). I will go to bed as soon as she leaves which won't be late because we have called it an early dinner.

Tomorrow work and then the gym. Tuesday work and the grocery store and to see my parents. Wednesday work and the gym. And so my week goes on. But I will heed the rule as best I can. I don't like being crabby any more than he does.

My Other Life

Still Life with a Curtain / Paul Cezanne, 1895

Earlier this month Marie posed an invitation to her readers to discuss their "other" or real lives. At the time I posted something to the effect of "it's all there." I said this totally without irony or sarcasm.

That's how deeply I feel about writing. Every time I put together a post, or an article, I am all there. What I think, what I value, the words I choose, the topics that matter to me. That's truly who I am, before cancer, after cancer, during cancer, without cancer.  That's my voice. Cancer's run a parallel path throughout my life, which I wrote about in some detail in other essays and discussed on the SIRIUS XM program, "Dr. Radio" with NY Langonne Medical Center oncologists Abe Chachoua ("Dr. Handsome") and Silvia Fomenti. The fact is I can no longer separate cancer as a distinct entity any more than I could write about life and leave out my husband, my sister, or my friends.

Through Twitter and Facebook -- you all know I cycle, that I adore my dog, that I'm a Stephen Minister and a lot of other things. A good afternoon is one in a museum, or hiking, or cycling in a competent pack on a cool, crisp day. Nothing better. I quilt when I have time, but I haven't had time for awhile now. I'm an occasional cook (and a good one) who lives in Texas and complains relentlessly about the heat. Second to writing is reading, and I love to travel. Both stir the mind and stirring things up is good for the soul. It's how I hang.

A deeper thread to the story is right here, my husband Steve's cancer story. This was written before his most recent recurrence, a process that involved extensive plastic surgery that kept a "flap" of skin in place securing his ear to his neck for some three months. He says my cancer made his seem like the flu and I say his made mine seem like a walk in the park. What I can tell you is this: his stitches were removed early in June and two weeks later he competed in the Senior Olympics here in Houston. That's cool.

 

So now I see I have started my entry about why I won't write about my other life. When I write you, this IS my life:)  All I can say if make sure it's about love.  That's why we're here.

Jody

Cancer Perks

As much as cancer just plain sucks there are serious perks! My family and friends have been beyond generous. It amazes me that people are really nice and not everyone is a complete ass. I haven't even gotten to the really bad junk yet and am speechless at the out pouring of gifts! Yes, I said speechless:) Not sure what Tom likes more the gifts or my lack of speaking. Who knew that when someone gets stupid dumb breast cancer they get cancer perks??? Thank you to all those being so thoughtful. Really you have no idea how much your thoughtfulness means to me.  Do not worry if you have been waiting to give me your  cancer gift you have all summer. Actually, I have been told I can pull the "I have breast cancer" card for 10 years. HMMMMMM......shoes really do make a girl feel better!

schoolyard currency

Last night, my 9 year old lost a baby tooth. This didn't strike me as such a big deal - he's been losing them (including all his front teeth) since he was 6. He, however, was thrilled. "I can't wait to tell my friends."


I didn't think his friends would be especially impressed  but I have never been a nine year old boy. This morning, he walked into the yard at school and straight over to two friends. Watching from a distance, I saw him say something and open his mouth. His friends peered in excitedly and one shouted "Ooh! Bloody!"


I turned to go home, leaving behind a very happy boy all shored up and ready to have a great day.

the best

Big promises.

High Expectations.

Met.

And exceeded.

So much more lies ahead.

I am privileged to share this path

With you.

Happy Fathers' Day.

About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

Just when you thought it was safe they use the "c" word

"How are you doing today?" Seriously??? friggin' awesome...its 98 degrees, I got 5 kids here, tomorrow is the last day of school and I got STUPID DUMB BREAST CANCER, I am doing great! Well, when you ask a stupid question I will give you a sarcastic answer.

Meeting with Doc #1 went just perfect until she used the "c" word and we were shocked. I mean how dare her use that language around my delicate ears. When she said chemo I almost walked out!!! There is a chance I may need it, that pisses me right off. I mean I have good hair. Now that will only happen in 3 different scenarios. I will not bore you with those and to be honest the only one who really understands is the doc, MC and google. If I have chemo be ready to see all my girls with shaved heads, RIGHT!!!!!!!! Notice that is not a question.  I have decided that I need to be looking at the worse case here. I was going along thinking ...oh it is just clogged ducted, oh they will remove it and that will be it, oh I won't need a mastectomy....then we get hit with a rock. Granted stupid dumb breast cancer hit me like a little bitch but still hit me! So we are preparing for the worse now.The docs will set up the surgery date and it will be full steam ahead.We see Doc #2 on Friday just a second opinion and because I have not been felt up yet by all the doctors in CNY.  I am getting set up with an oncologist as well. Of course, I have a connection there too thanks big brother:). It really does help to have all these doctors put a face to your file. So now I have a radiologist, breast care doctor, a plastic surgeon and a oncologist. If only it was a maid, a chauffeur, personal assistant and a personal trainer  I would be thrilled. Notice I did not say cook cause let's face it, I am way to controlling in the kitchen.

This "lump" in the road will make for a long trip but we (Tom, the boys, my family, my bitches) got this covered.  In the end I will be more active in CNY Komen and breast health and early detection, that is really what you all are excited for! Thanks for being here for my struggle, just make sure you are here for my celebration. May 18th NYS Fair for Race for the Cure with team "Cure or Bust", as this leader comes across as a SURVIVOR!!!!

"family personalities illustrated"

my new rack

Warning: This post may contain too much information for some readers.


I have not worn a prosthesis for more than two years. Lymphedema and then scarring from radiation made the experience of wearing it excruciating. The last time I tried to wear it, I was on a date with my spouse in Florida. After an hour, I was in tears, it hurt so much.

Out it came and I haven't looked back.

At least not much.

I find that I'm pretty comfortable without a prosthesis. Sometimes I dress to camouflage and others I just don't care. And most of the time, I don't think about it at all.

Lately, though, I've wanted the chance to blend in a little more, to not have to lead with my cancer when I meet people. And although I have some great tops that work with my asymmetrical body, (from Rhea Belle, of course) I do get tired of the limited options open to me (it's hard enough finding funky clothes in larger sizes).

So, while feeling slightly guilty about giving into societal notions of beauty (in hiding my asymmetry, am I implying that I think there is something wrong with it?), I set out to visit Kelly's Mastectomy Boutique.

The entire operation took all of ten minutes ("Oh look! Boobs!" I exclaimed as I tried on prosthesis and bra) and cost several hundreds of dollars (recuperable, thanks to the government and my insurance plan. I wonder though, why do we need a referral from a doctor? Does anyone get a prosthesis for fun? What would they do with it?). I brought it home, stuck it in my closet and didn't wear it for almost a week.

Yesterday, I decided it was time for the prosthetic equivalent of a test drive. I was meeting Sassymonkey for pints and knitting on a sunny patio. It seemed like a low stakes endeavour, in that if I arrived with my boobs pointing in different directions, Sassymonkey was likely to be unperturbed. It was also a good opportunity to put the boob through it's paces, as I would be biking, knitting, eating, sitting in the warm sun and engaging in a social encounter.

My new fake boob is squishier in back and is supposed to be lighter - better for both my uneven chest wall and lymphedema. I wore it under a t-shirt with a picture on it (much harder to wear with an uneven chest) and one that is slightly snugger than I have been wearing lately. I noticed immediately that my waist, gone for ages, seemed to reappear. I also noticed that my posture seemed to improve.

I ran into someone I knew on my way to the pub. She said, "You look different. Have you done something to your hair?"

And after Sassymonkey and I had been sitting for a while, I pointed out my newly symmetrical rack to her. "That's what's different!" she exclaimed.

"You'd tell me if I were unbalanced right?" She assure me that she would (I felt unbalanced, I'm so unused to having this weird mound on the right side of my chest).

All in all, I declare the outing a success. The thing felt odd but there was no pain. I even forgot I was wearing it for a while.

When Sassymonkey and I parted we hugged goodbye (I later repeated this experience with T. Hugging feels very odd, like we are squishing a big pillow between us) and she noted, "You're still balanced."

I said I was glad but that I was going to take it off when I got home. "It's like breaking in a pair of shoes, you know?"

She said that she did.

As I type this, the stand-in for my right boob is nestled in it's box in my closet. I am toying with taking it out for a spin again this evening.

And one last thing: there needs to be more support and encouragement of women who create clothing for the post-mastectomy body. Also, it would be great if the bigger clothing companies would come across, by supporting the work of women like Jacqueline and modifying their own designs. I can't be the only woman who has had a mastectomy, does not love prosthesis and cannot/would not choose surgical reconstruction.

bloggers who live with mets and write about that and other things

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.

Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 

Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.

In no particular order:

Katherine O'Brien  I Hate Breast Cancer 
@ihatebreastcanc

Catherine Brunelle Bumpyboobs 
@Bumpyboobs

Anna Craig 
@annamecraig

Lisa Bonchek Adams 
@AdamsLisa

The Sarcastic Boob 
@sarcasticboob

Ann Silberman Breast Cancer? But Doctor...I hate pink! 
@ButDocIHatePink

Jen at Booby and the Beast 
@JCampisano

Carolyn Frayn Art of Breast Cancer 
@CarolynFrayn

Lulu Change Living Life Furiously 
@LulyChange14

Uppity Cancer Patient 
@UppityCancerP

Telling Knots 
@knottellin

Kate Kate Has Cancer
@KateHasCancer

Jill Dancing with Cancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy
@IMBCadvocacy

Susan Rahn, StickIt2Stage4
@StickIt2Stage4

Sarah Illingworth 
@Illingpig

Victory Over BC
@MetaThriving

Phyllis
@Groz_P

Jude Callirgos
@JudeCallirgos

FUBC
@FUBreastCancer

Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight
@nicolejasien

Honorary club member: 

Nancy Stordahl at Nancy's Point
@NancysPoint

Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.

The organizations that don't ignore us:

Metastatic Breast Cancer Network
@MBCNbuzz

Metavivor
@metavivor

Canadian Breast Cancer Network
@cbcn

ReThink Breast Cancer
@ReThinkTweet

This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.

Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).

I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.

Being an elephant....

Or more on perceptions vs. reality. I talk about losing weight and my deflabbification project but it never seems to work. I have decided my job is very fattening. I sit next to the kitchen and then people bring in nasty things like donuts and cookies... or even make special trips to the bakery next door to get more when the homemade stuff is run out or they just want a sweet thing. And of course they get enough to share. Then there is the snack rack where for 90 paltry pennies you can get a bag of premade, chemical and fat filled, empty calories of your choice. All within 8' of my desk and in my sightlines. As well as the parade of coworkers going by for their share. So I decided I look and feel like this:

Or this:

Last week at the reunion, I was talking to a social worker friend about this (who is less than 5' tall and weighs less than 90 lbs) about how I feel fat and I hate the way I look in pictures. Her calm reply was that we all feel that way. It did help but I still feel fat. I know my downfalls - emotional eating, late night snacking after dinner, on the job snacking and I have promised myself I need to do something about this before I have to buy larger clothes yet again. But I do feel very sorry for this elephant that is on a strict diet to lose 500 lbs during pregnancy no less.

proud mama requests your support

 My son and his friends made this video as their entry for a contest. Canadian indie rock artist Joel Plaskett (we're big fans in our house) has invited folks to make a music video for a song from his Scrappy Happiness album. The winner gets a free backyard concert!


 This is where you come in. Please watch the video. If you like it (and how could you not - it's brilliant!), click through to YouTube and "like" it (the like button is under the video on the left side). I know it's a bit of a popularity contest but I'm proud of these kids and think they should be encouraged (and not just because I'm Sacha's mother!). 


 

Breast Humor

Implants REALLY???

I have to say, meeting with a plastic surgeon about putting implants in really sent me for a loop. Every step is making stupid dumb breast cancer real. I wonder when it will stop feeling like another girl's life? They lop off my old boobs and put tissue expander in and then weekly pump me up to my desired size. Wild! Tom gets no say in this, although he wishes:) Then I go back in 2 months to get the implants put in. Did I mention that I friggin hate staying in the hospital? Although having nice perky boobs that will not require a bra just maybe worth it.  Bonus, looks like our Cape Cod trip should be safe plus NYS Fair, here I come. Yes my children can relax....there will be little boobs there while we are away. This is the boring very short version of a long ass doctor appointment.  Every doctor has been great and I have not been kept waiting at all. I have also done my share of name dropping through this, it pays to know lots of people who know lots of people! Thanks to everyone who has been helping me, I am keeping a list and you will not be forgotten. I feel a little like a mafia princess dropping names that end in a vowel, getting boobs, asking for favors that cannot be refused, and kicking stupid breast cancer's friggin ass!!!

Supplements and Dr Oz and other medical inspirationalists

The decline of the TV doctor....Or more specifically false advertising of miracle treatments...


Dr Oz and others have gotten rich by using 'flowery language' to promote supplements for weight loss. Green coffee extract? Didn't Oprah make him famous in the first place? That's another show for medical information... Dr Oz is currently spending his days at the US Senate defending his language and promotion of supplements that do exactly nothing and making scam arts rich.

The problem with these fad supplements are several:

• Supplements are not tested and approved by the FDA and can contain toxic ingredients and can interact with prescription medication. The message here is do not use them without talking to your doctor.
• Scammers and others quickly hop on the bandwagon and get rich off the people who believe in what they see on TV.

"Just because you see a supplement product on a store shelf does NOT mean it is safe or effective," the FDA website says. "When safety issues are suspected, FDA must investigate and, when warranted, take steps to have the product removed from the market. However, it is much easier for a firm to get a product on the market than it is for FDA to take a product off the market."

While Dr Oz is grilled in Washington, we just need to remember what we have been told previously. Don't believe what  you see on TV or read online.

I still miss you so much

Evil Twin

Nurse-“This is just saline to flush out the vein.”

Me-“What no crack or heroin?”                       

Nurse-“No, I lost my supplier.”

Me-“I grew up over here. I could find you one.”

Nurse-“How do you do with needles?”

Me-“Fine. I shoot up daily”

Nurse-“WOW you have good veins, must go between the toes”

Thankfully the wonderful staff at St. Joe’s Imaging understood my sense of humor. Especially, when the nurse told MC I look familiar, maybe I have an evil twin, and she said "NO SHE IS THE EVIL TWIN", thanks beotch! For those who know me wel,l the MRI was not fun. I had to sit still, have a LOUD pounding in my ear, lay on my chest and NOT TALK for over 30 minutes!! I thought my head was going to erupt from comments, jokes and gripes. My sweet sweet friend’s husband Dr. Dave Kunz (radiologist) read my report after and explained it to me (well to MC; I did not understand what the hell they were saying).  He even did an ultra sound on the left breast because there was a spot. Here are the facts:

1.       It did not spread, great for me!

2.       She did not get it all, not so great.
3.     The other boob has a spot that would be “watched”closely, but it is getting lopped off so who cares!

4. Dave is going to send all my reports to Dana Faber in Boston for a reading as well. See it pays to know LOTS of people!!!

Next step….plastic surgeon tomorrow!! We will discuss what he will do and how big, all that good stuff. Tom is excited for that appointment.

Let’s say it again, EARLY DETECTION SAVED MY LIFE! Just you wait, stupid dumb breast cancer, I am taking you down!!! CURE OR BUST because I can imagine a cure....