Monday, October 20, 2014


This adventure began last December.  Technically, it began in April of 2006 when I was diagnosed with osteopenia.  I had my very first bone density test on the same day I had the mammography which would reveal a density that was playing hide and seek from two different radiologists.  In a way, that day was the beginning of everything.

I discussed the bone issues with my ob/gyn at the same time she was reordering new tests because the radiologist wanted to do a sonogram of one area and magnified images in another.  He needed a prescription despite the fact that his astute eyes realized there were questionable images on my mammography when compared to the films from the year before.  Since a radiologist is a medical doctor, I'm a bit confused about the need for a second prescription.  Technically, isn't this like a referral to a specialist?

Once the hand off is made, the specialist makes the calls relevant to the care they are delivering.  Not so with radiologists. They still need permission to care for you after your initial visit.  They are trained and accredited to read imaging.  If something is not right, why would they need to confer with a non-specialist about their area of expertise?  Radiologists may be the Rodney Dangerfields of the medical profession.  Only a notch above pathologists, who, when you come down to it, belong at the top of the heap.

Particularly when cancer might be suspected, these doctors are the ones that identify and provide specifics.  They are the diagnosticians.  They are seriously important players.  They are giving your clinician the information upon which your treatment will be determined.  And yet, they are seriously under appreciated or at the very least, not given a second thought by most of us.

And that osteopenia?  We were slated to have a conversation until cancer took center stage and the conversation fell by the wayside until December of 2013.  I have had three subsequent bone density tests.  Each test worse than the one prior which came as no surprise to anyone.  Femara, along with other aromitase inhibitors, wreaks havoc on the bones.  Tamoxifen, in contract, actually strengthens bones but I was more fearful of the uterine issues associated with tamoxifen so I used my chemo-induced menopause, added an oopherectomy as the check-mate and went straight on femara.

I was faithful about my daily calcium and vitamin D supplements.  I continued to do weight bearing exercise.  Bones continued to deteriorate.  I stopped taking the calcium (I still take vitamin D) when the results of bone density number 4 returned ongoing bone loss.  Four months later, when my blood was drawn, my calcium levels were basically unchanged over a seven year period.  After carefully reviewing all of my blood work, I decided that I was going to stop wasting money on the calcium pills.  I probably should have waited to discuss this with the doctor but it was a supplement, not a prescribed medication.  Give me enough time and I'll rationalize any decision I make, no matter how dumb it might be.

Prior to December of 2013, I discussed adding a drug like Boniva with my doctor.  I determined I was not adding yet another medication to my daily repertoire.  So what happened in December of 2013?  There was a study presented at the San Antonio Breast Cancer Symposium.  The study included the use of an intravenous bisphosphonate with an estrogen suppressant after the conclusion of chemotherapy in early stage breast cancer patients.  It seemed there was a benefit in the reduction of the incidence of bone metastases in those patients who were treated with zoledronic acid.  Getting all technical.....  Boniva is an oral bisphosphonate, zoledronic acid is an intravenous bisphosphonate, brand names Zomeda or Reclast.

Hmmmmm.  Maybe it would be worth treating the osteopenia with an IV infusion.  I might be giving myself an bit of an edge against bone mets.  MIGHT is the operative word in that sentence.  The women in the study were treated immediately upon completion of chemotherapy.  I was six and a half years post chemo.  Thus, I can't stress this point strongly enough.  The study results did not apply to me.  I hijacked my mom's oncology appointment in December.  Technically, she hijacked it on my behalf.  When our doctor asked her if she had any other questions, she quickly replied, "I don't, but she does."

We began discussing that study and then my ongoing bone loss.  He was ready to write a prescription for Fosamax or Boniva. I told him I wanted the infusion.  I went through my reasoning.  He agreed it would be an acceptable solution to treat the osteopenia and we both agreed there was no science to back the idea that I was doing anything to reduce risk of bone metastasis.  But still.  In my mind, strong bones, sans any nooks and crannies for a dormant cell to hide out, I was helping prevent a dormant cell from going rogue.  Again, without any basis in science, coming from someone who is constantly jumping up and down demanding to see the data, my treatment would be for my osteopenia.  PERIOD.

It was December.  I spoke to the PA who would be ordering the treatment.  I told her I discussed it the the oncologist.  She agreed it would be an appropriate course of treatment for my bone deterioration which was exacerbated by six years of femara.  My cancer treatment was causing the problem and this is backed by tons of data.  Thus, the cancer doctors should be the ones addressing the problem.  Thanks to my prior health insurer's decision to cancel our small group policy as of December 31, I was busy scrambling to find a suitable replacement policy.  Along with millions of others, getting my ongoing monthly maintenance medications refilled was a challenge.  I had little or no patience to figure out what had to be done to get an IV infusion approved.  I dropped the ball.

In May, at my regularly scheduled appointment with the PA, I brought up the infusion.  She had forgotten about anything we discussed in December.  I can't fault her for that.  She sees many patients.  And this is why being an empowered patient capable of self advocacy is of utmost importance.  I CAN fault her for failing to make ANY notes in my record regarding the fact that she was going to get an okay for the reclast infusion.

What ensued was ugly.  I thought I wrote a blog about it, but I may have just taken that to twitter.  When I brought up the zoledronic acid, we got into it.  She told me I had to fail on a bisphosphonate before they would use injections.  What I realized in the aftermath?  She was NOT listening to me.  I was sticking to the compounds rather than the brand names.  She was using the brands names.  "We can't give you Prolia."  That was followed by a bunch of other things including her rather dismissive statement, "You said he wanted to write you a prescription, no one approved anything, you are searching on the internet."

I'm pretty sure I lost my shit at that statement.  Yes, I'm searching on the internet.  I read peer reviewed journals on the internet.  I read copies of presentations by researchers on the internet.  I communicate with some of the world's most brilliant doctors on the internet.  It wasn't until she said something about denosumab that I realized she wasn't listening from the start.  Then, she suggested she would give me the name of a "lovely rheumatologist" they work with.  "Bones are their specialty."  And once again, I lost my shit.  My voice was definitely elevated.  I pointedly told her I never wanted "prolia" but simply an IV bisphosphonate.  She kept repeating the fact that she would be happy to give me the name of the rheumatologist.  I.Was.Pissed.  I ended that conversation with a sharp tongue.  "I am not going to see another doctor to repair a problem being caused by a medication YOU have prescribed.  We are done.  I will take this up directly with the oncologist."

I sent him an email, my mom saw him the following day and properly remained out of it.  "What is happening with my PA and AnneMarie?"  I had already spoken to the PA.  She called within twelve hours to tell me she put in the order for the infusion. All my mom would say to him, as far as she knew, everything was resolved.  And again, the dropped ball.  This time everything WAS documented and 5 weeks ago, I scheduled the infusion.  I had a blood draw two days prior.  I hydrated.  On September 26th, I was back in the chemo suite for the infusion.  It was a bit surreal.  I took a selfie.  The chemo suite has a wall of windows which is quite soothing.  Makes for lousy backlight.....

One hour after my arrival, I was exiting the building.  I jumped in for a google hang out from my car with Upstate AnnMarie, ran a few errands, and by 2AM, I was shivering so badly, it woke me up.  That was Day One of 3 Weeks A Fever.  A Friday infusion followed by an elevated body temperature hovering slightly above 102 degrees precisely twelve hours later.

I was already aware fever was not an uncommon side effect, but on Day Four, Tuesday morning, I put in a call to the doctor. One of the nurses got on the phone.  "Something else must be going on.  The fever would not last this long, nor would it be that high.  You should go to your PCP, you might have an infection."  The following day, I was at the local medi-center where I was checked for pneumonia, flu, strep, enterovirus and was declared healthy with the exception of some white cells found in a urinalysis.  Out of an abundance of caution, I was put on a ten day regimen of cipro, pending results of a culture.

Less than 48 hours later, I was in the hospital emergency room.  The fever would not break, still hovering in the 101 degree range.  My normal body temperature is 98.2.  At 101, the fever kept me in bed, depleted my energy, caused a complete loss of appetite.  I could not get past the guards to the triage nurse without answering one very important question.  Was I out of the country within the past month, and specifically had I been in Africa?  The ER was a zoo and it took at least three hours before I would even SEE the triage nurse.

At 6:10, I told my mom and my husband that I was leaving.  I wanted to go home and go back to bed.  This was exhausting and no one was doing anything.  I was placated.  "If someone isn't in to see you in 20 minutes, we will leave."  I glanced at the clock on the wall.  "Fine.  6:30 and we are out of here."  I suspect he went out to announce I would be leaving because there were nurses and technicians at my bedside within two minutes of that announcement.

I fought with the hospital technician who insisted it was necessary to do another chest x-ray.  I had the disk from the x-ray taken 48 hours prior which he deemed would likely "not be acceptable" to the doctor at the hospital.  My patience level was non-existent.  After a debate that lasted several questions too long, I told the technician not to ask again and to have the doctor come and discuss the need for additional radiation.  If they wanted to do any further imaging, I needed a good damn reason and it most certainly would be something more along the lines of a low dose CT scan or nothing at all.

The hospital drew several vials of blood.  In fact, in my entire life, I've never had so much blood taken in one draw.  They needed to do two sticks to make sure the blood that would be sent for culture was not contaminated in any way by the workup for which we would have quick results.  They did an EKG.  I was given IV fluids.  And no diagnosis.  "Just some wacky virus." Frankly, my biggest concern was my kidney function.  I knew it was rare, but the medication could cause issues with kidney failure.  When all the labs came back normal and the only issues were the tests that related to my thalassemia, my mind was put to rest.

Where I disagreed?  The ongoing insistence by the nurses, the medi-center and the hospital about this "wacky virus."  I don't believe in coincidences and I don't believe that 12 hours after an infusion, I somehow developed a "wacky virus" that had nothing to do with the Reclast.  I found some information in a few forums about the side effects of Reclast including a few mentions of the lingering fever.  I was emailed by an angel who described what happened to her and it was nearly identical to my experience.  Still.  I wanted evidence.  Data.  Hard-core science.

Enter, Cliff Leaf.  We had been trying to arrange a face to face meeting and when I finally felt well enough, I began to go through a bunch of unanswered email messages.  I sent Cliff a message to see when/if we might be able to set up some time for lunch or coffee.  I told him what was happening and in his reply, he attached copies of that hard core science I was seeking.  That led me to a second paper, which, thankfully, was not behind a paywall.  Turns out the Reclast causes inflammation in certain biomarkers (cell proteins) and this could cause fever spikes.

The study I found was the absolute gold standard.  Double blind, placebo controlled population matched.  In the land of research, it doesn't get much better or much more definitive.  Without going into all sorts of science that I understand after reading it but would be completely incapable of recanting, it comes down to this.  The last sentence in the study which was published online on November 30, 2010:

Based on those data, we encourage clinicians to consider the use of acetaminophen 650 mg. four times daily for 3 days for the reduction of post-dose symptoms following zoledronic acid infusions.

The data is strong.  The number of patients who used tylenol and experienced fever of 102 (so much for the initial info from the nurse about "not that high") was less than HALF of those who were treated with placebo.

Instead of 3 Weeks A Fever, this should have been 3 Days Take Tylenol.  And yes, the paper has been printed and highlighted and will be brought to the doctor so they might think about incorporating this into their standard of care, particularly with the first infusion.

One final note:  If you've tried to contact me without success, now you know why.  And it was pretty upsetting to have to pass on some of the events I'd hope to attend over these past three weeks.  I'm still weak but at least I have answers.  And I'm once again, forever indebted to Clifton Leaf for his sage wisdom and never ending well of information.  And once again, I've learned the importance of being my own very best advocate.  With a little help from lots of friends.    

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Thursday, October 16, 2014


Five years.  That whole celebratory FIVE year survival thing.  It's a pretty big deal.  Until it's not.  Thus, another #FACTober.

I just read a piece on Healthline written by Judy Salerno.  That would be Doctor Judith Salerno, graduate of Harvard Medical School and the current CEO of Komen.  I was hopeful when I met Nancy Brinker last November.  I thought the conversation was going to change.  I was hopeful to see a science person at the helm of Komen.  I thought the conversation was going to change.

I know I'm not happy about the fracking bits being painted pink to raise awareness.  I'm definitely not happy about the hoopla that is expected during an upcoming NFL game when Nancy Brinker will accept a check from a company that engages in fracking.  Need a little more understanding about the whole fracking thing?  Breast Cancer Action's Stop Fracking With Our Health campaign provides the foundation and the background.

I've tried to stay on the sidelines and let the others raise their voices over the pink hypocrisy.  Lori's recent post complete with the catchy tune and video?  Great stuff, a singing mammogram!  After all, who wouldn't want a doo-wop reminder?  The well-intentioned but unaware and misguided individual who decided it would be a good idea to choose October 13, Metastatic Breast Cancer Awareness Day as the day to pull a "No Bra Day" awareness campaign.  Another winning moment.

I've been sick most of this month.  Not pink fatigue but sick.  With some sort of real illness which appears to be a side effect of a medication (more on that in an upcoming post).  What began as a fever of 102 has slowly crept to the 100 range, and no, I haven't been to Texas or in Africa (and yes, I've been asked, several times).  Maybe it's just as well I've been down for the count since September 26th.  Otherwise, I'm sure there would have been a rant a day in this space.  There's no shortage of hyperbole, hype, headlines and pink nonsense.  I glance as my social media channels.  I jump in when I can.  I see what's going on.

My goal, before getting sick?  I decided I was going to stick with #FACTober.  I wasn't going to isolate anyone by criticizing but in the same vein, I can not, WILL not, sit on the sidelines when a statement like this is pulled out of an article to be highlighted and tweetable.

Five year survival rates?  Seriously??  This is such a misleading statement.  Is it true?  I'm sure in some set of statistics this can be shown to be an accurate statement.  Let's look beyond the statement. Shall we?

I have a few questions.  First, define "early stage."  Stage 0 and Stage I?  Since the American Cancer Society lists the five year survival for Stage 0 and Stage 1 at 100%, I'll go out on a limb here and presume at least some Stage II cancer subtypes were included.

So what's the problem.  For starters, my mom.  She survived both of her early stage cancers beyond the five year mark.  She is presently in treatment, which will continue for the rest of her life, because her cancer metastasized.  Yes, she would be included in that number.  Even if she metastasized a week after diagnosis and was alive at the five year mark, she would be included in that number.  I'm pretty sure my mom is counted twice, which, in my world, is like adding insult to injury.

(Allow me to interrupt myself.  My mom is doing quite well.  She is still on her first line treatment and her bones are looking good.  Stable.  No progression.  Some numbers slightly up, others down.  All in all, doing well.  But, make no mistake about it, she is in the oncologist's office every month for treatment and is in some sort of scan machine every three months.  And yes, we both suffer from scanxiety.  It only creates a bit of emotional havoc four times a year, scan weeks.  That aside, she's quite a social butterfly and I am beyond grateful.  End of sidebar.)

Returning from that slight detour, off the top of my head, I can probably name a dozen people, in a millisecond, who are beyond that five year mark, living with metastatic disease.  The way that is highlighted, it misleads.  Those who don't dig beyond the sound bite might be inclined to think along these lines:

"I got past the 5 year mark, I'm pretty much guaranteed I'm done with breast cancer."

And yet, nothing could be further from the truth.  That sentence is a whole lot of fluff, propped up in pink to sell a bill of goods.

Five years guarantees nothing.  Recurrences can happen years, even decades later.  It seems the studies are beginning to show ER+ cancers tend to recur after the magic five year mark.  And for the record, the majority of breast cancers diagnosed are ER+.  According to the information I've dug up, approximately 80% are ER+.  That's pretty much the lion's share of the diagnoses.

Let's expand further.  Those who are diagnosed at Stage IV are the only ones who are counted when you see numbers regarding stages.  If you metastasize after a Stage 1 diagnosis, you are in some sort of no man's land.  Still considered a stage 1 "survivor," one of the biggest gripes within the metastatic community is that they are not being properly counted.  I concur.

As for those of us diagnosed with early stage disease, did you read my One In Eight post where I had people of different generations seated around an imaginary table?  Here's another imaginary table.  Seat three non-metastatic breast cancer patients at a table.  Doesn't matter their age or their stage of disease.  Doesn't matter if they are months beyond initial treatment or if decades have passed.  Let's imagine we are at one of those bistro tables and we are patients diagnosed stage 0, stage 1, stage 3.  Take a look around.  One of you will metastasize.

The way I see it?

Apparently, we are OVERESTIMATING our risk of getting breast cancer.

Most disturbing?

Apparently, we are UNDERESTIMATING what can and does happen once we actually GET breast cancer.

I've taken a highly complex matter and really dumbed it down (primarily because I don't have the brain to write--remember that fever thing I mentioned earlier.....).  But yes, based upon the best numbers available which is some sort of crazy calculation using deaths vs. diagnoses and who knows what else,  we know that up to 30% can and do metastasize.  Stage doesn't matter nor does the time from the diagnosis.  Said another way, a Stage 0 patient diagnosed in 1994 can be diagnosed with metastatic disease TODAY.  It's all about biology.

That's a pretty hefty number.  It's high time we began to keep information on those who do metastasize.  It's high time the information about metastasis is incorporated into every bullshit awareness campaign.  This, however, is an inconvenient truth and it's one that distracts us from the real purpose of October.  A pink party.  Instead of trying to educate about the lack of any significant dent in the number of deaths from the disease in FORTY YEARS, Go Pink.

For the love of I don't know what, we are in the data revolution age and we can't have a data-set that requires all health care providers input some very basic information to get a really clear picture.  The answers lie in the data.  The data tells a story. There may be threads for an astute researcher to pick through or there may be obvious, glaring groups that emerge.  How about this for a start?

  • Age and stage at diagnosis
  • ER/PR/HER status at diagnosis
  • Site(s) of metastasis
  • ER/PR/HER status of metastatic tumor (if possible to obtain)

In this age of Big Data, I have to believe some valuable information might emerge.  We don't need to start with big, lofty goals, just get the basics and build upon that.

As for being alive at the five year mark?  Not really so impressed with that.  In fact, it's rather disturbing when put in proper context.

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Wednesday, October 8, 2014


I do not hate the pink ribbon.  I supported that ribbon.  Blindly.  I do not consider myself a stupid consumer.  I know how to properly vet organizations before donating money.  When I'm called by a "professional fund raiser," I politely decline.  As an absolute rule, I don't offer any over the phone donations.  Since becoming actively involved in many difference advocacy efforts, I seek my own organizations to support.




The technical name?  Cause marketing.  THIS PISSES ME OFF.  And it PISSES ME OFF because WE should be smarter.  We should be savvy consumers.  Instead, we are The Brand.  We are marketable commodities.  We are profit margins.  OUR illnesses add to someone else's bottom line.  Mind you, I understand we live in a capitalist society and corporations are not in the charity business.  Thus, I don't begrudge corporations for getting in on this whole breast cancer gig.

If they are donating a decent percentage to the right organizations and they are making money in the process, so be it.  It's money we would not have otherwise seen.  I get it and I can state with honesty, that I appreciate the funds.  Think about it for just a second before telling me I've gone off the deep end.  Would I prefer they simply write a check, take the charitable deduction on their corporate taxes and skip the hoopla?  Certainly.  I think we are a long way from that and as we work toward that goal, I'm happier to see there is money flowing.

As long as they aren't selling things that are known to contain carcinogens or promoting items that are unhealthy.

As long as they aren't keeping the lion's share of what they sell.

There's always a caveat and those are mine.  Except of course, for the NFL which I still contend has zero business in the breast cancer business.  Set aside the domestic violence for a second, they really need to be backing brain initiatives.  More on that in an upcoming post.

So, when you see an item you might want to buy, if you like the item, need the item, want the item then BUY the item.  If you are doing it because of a ribbon, the answers to these questions should be somewhere on the packaging or on the display.
  • What organization is receiving the donation?

And for the record, you can bypass the middle man and donate directly.  If research is your thing, look at what is being done at the cancer hospitals.  The list of NCCN member hospitals is here.  Digging around the hospital sites, you should be able to find their research and in some cases, you can earmark you money to a specific research study.

Cold Spring Harbor Labs and Rockefeller Research Labs are two other places that jump to mind.  Stand Up To Cancer funds "dream teams" to stop the silos and force collaboration among researchers.  Then, there are organizations like METAvivor, all volunteer and they fund only research specific to metastatic disease.  You donate a dollar to METAvivor, the entire dollar is going into the hands of a researcher.  Theresa's Research is another organization that specifically funds research on metastatic disease.  I'm sure there are others.

Outreach, helping women in the community?  If that's what speaks to you, I'm fairly sure googling breast cancer support with your own city or town will bring up a whole host of local organizations.  You can keep your money in your community.  My sis, upstate Ann Marie, aka Stupid Dumb Breast Cancer wrote about a few organizations in her community and beyond.

Feel like you want to reach the families of women who have died, leaving little ones to be raised by single dad's?  Atalie's Hope was set up by my friend's mom for just that reason.

Donate directly so you can be sure the money is funding what speaks to you and to make sure most, if not all of your money, will be provided to the organization you select.

Feel free to leave info in the comments about organizations you know/love and we should know about, too.  We can make this into a "Donate Directly" list.  I'll try to get them all within the body of the post as clickable links.

A list:

Avon Foundation  credit and thanks:  Heather Mores

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Monday, October 6, 2014


Here's a great soundbite.  Another way of instilling fear rather than speaking truth and educating.  One in Eight.

It has been stated that more women than not, OVER-estimate their risk of developing breast cancer.  I've seen this in enough publications for me to realize it may be an area that could use a bit of clarification.  Thus, another #FACTober.

I know what it is like to fall on the short side of a statistic.  To be completely honest, I am not a fan of statistics and soundbites. Recently, I was involved in a conversation with someone whose area of expertise is statistics.  "I can make numbers look however you want them to look."  This was someone I hold in high esteem.  Our conversation was more about validating my skepticism rather then selling her soul.

Beyond that, I know too many who fell on the short side; women diagnosed with breast cancer in their 20's and 30's which is a statistical anomaly.  In 2006 when I was in the three month process of being diagnosed, I pulled the short straw every time a doctor quoted a statistical probability.  At least, however, I was not being misled when I was provided with the statistics. "Less than 10% of the time..... " and yep, I was in the 10% so I get it.

The statistics I have displayed below are for women with no known risk factors.  I did have a risk factor as my mom was diagnosed with breast cancer in her 40's.  SHE was one in 69 when diagnosed having had no prior risk factors.  As a result, this chart would not apply to me.  However, I was STILL not "One in Eight" when I was diagnosed.  You see why I do not like statistics?  You really need to understand what you are looking at and whose agenda is being pushed.  I don't know how much my mom's diagnosis changed my chances.  And, really when you are the ONE, it simply sucks because it does and yes, someone is going to be the ONE.

One in eight is a good springboard for a fundraising campaign.  It makes for a great way to terrorize those who do not understand that the number applies across your entire lifetime and it increases with age.  As you are seated around your table with eight family members of different generations or eight close friends, don't try to figure out who, unless you also incorporate WHEN into the equation.


As for my family members......

My sister is in her 60's
My older daughter is in her 50's
My younger daughter is in her 40's
My niece is in her 30's
My granddaughter is in her 20's

Not ONE of these relatives is at that statistical One in Eight.  Not Yet.  Just Me.  Grandma.  Put eight  women who are older than 70 around the same table, and there's your one in eight.


My sister in her 60's?
1 in 29
My older daughter in her 50's?
1 in 42
My younger daughter in her 40's?
1 in 69
My niece in her 30's?
1 in 233
My granddaughter in her 20's?
1 in 2000

NOTE and this is important: these are the most recent figures I could find.  In my world, it does seem like the diagnoses are younger and younger but without the data to back my observation, I've chosen to stick with the facts as they are presently reported.

NOTE and this is most important.  When the one is you, it doesn't matter if it's one a bazillion.  One is the loneliest number unless it's a winning lotto ticket.  Breast cancer doesn't qualify. 

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Thursday, October 2, 2014














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Wednesday, October 1, 2014




~A selfie quote










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