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Yet they have all the answers ...

6/29/2015

Last week I posted about how the blame game needs to stop. I included an infographic from Pfizer that outlined the results of an extensive survey they conducted in 2014.

You'll find one portion of that infographic above. More than SIXTY PERCENT of respondents say they know little to nothing about metastatic breast cancer.

How is it then that an overwhelming majority of people in everyday life seem to know what metastatic breast cancer patients (or any cancer patient) should be doing to cure their cancer?

Why does everyone seem to have "helpful" advice to offer? Why is most of that advice non-evidence based, but merely something that is read on the Internet?

Let's put this on the table first: THERE IS NO CURE FOR METASTATIC BREAST CANCER.

Yes, there is the rare 2% who achieve the highly sought after permanent "no evidence of disease" (NED), but the vast number of patients will die of the disease unless an accident claims their lives first.

In spite of these alarming statistics, a well known best seller has outlined reasons that people achieve "radical remissions." The premise of this book is that if a patient does these things, then their cancer can be overcome. While the author does not encourage abandoning conventional treatment, the focus of her book is that of the unconventional ... her claims resulting from interviews with those whose cancer "magically" disappeared. The idea behind the book is that if you embrace what these 1000 people she interviewed (not science based, but anecdotal, after-the-event memories) claim is the reason for their remission, then you, too, can have the same results!

The unspoken? That if you don't embrace these ideas, then, well, it's your own fault you die. You didn't do all that you can do. More blame, blame, blame.

Because of this book (read more by those who have never had cancer than by those who have), dangerous recommendations are made all the time by those who also admit they know little to nothing about metastatic breast cancer. However, please remember:

THERE IS NO SPECIAL DIET THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF DEEPENING YOUR SPIRITUAL CONNECTION THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF INCREASING YOUR POSITIVE EMOTIONS THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF REDUCING SUPPRESSED EMOTIONS THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF HERBS AND VITAMINS THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF USING INTUITION TO MAKE HEALTH DECISIONS THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF TAKING CONTROL OF YOUR HEALTH THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF HAVING STRONG REASONS TO LIVE THAT WILL CURE METASTATIC BREAST CANCER.

THERE IS NO AMOUNT OF SOCIAL SUPPORT THAT WILL CURE METASTATIC BREAST CANCER.

These premises have caused a lot of grief among cancer patients. While all of these points may make living with metastatic disease more bearable, NONE of them are cures and all they do is make the patient who did her damndest to implement them feel like a failure when she is told that all options are gone and that her days are numbered.

This idea of radical remission has empowered the ill-informed lay person to "take charge" over a cancer patient and gives that same lay person permission to "bully" the cancer patient.

The metastatic breast cancer does not need to hear (ad nauseam), "Just be positive!"

Yet those are the most common words told to a cancer patient of any stage of diagnosis.

Overall, I've done fairly well so far in my life with metastatic breast cancer. We don't quite know why. The cancer progresses, regresses, then it progresses some more and regresses some more. It's very much like that whack-a-mole game. You never know when and where it will pop up again. Just when we think we have an idea of what's going on, it completely baffles us and does something different.

However, I can't tell you the number of times people have come to me in awe and have tried to give me the reason I'm doing well. They say, "You are doing well because you are so positive!"

That makes me wince in pain. I know too many who have died of this disease and it had nothing to do with whether or not they had a positive attitude. Most of them were positive and while it helped them cope with daily life, it did not cure their terminal cancer, nor did it even slow the cancer.

The author of the book that promotes "radical remission" claims to have interviewed over 1000 people who have experienced this very real phenomena. Radical remissions (or miracles, as others would call them) DO happen. But do they happen as a matter of course?

No. That's what makes them unexplainable.

Just like these five amazing survival stories, they are not meant to be held up as examples of what others should do.

There are 8.2 MILLION cancer related deaths in the world each year. Even if this idea of "radical remission" impacted 1000 people each year, that's .012% (Yes, that's significantly less than one percent!). These numbers are nothing that should be touted as something to hope for or to achieve.

There is always hope. I hope to be in the 22% of metastatic breast cancer patients who live five years or more. I'm pressing on towards that goal, but I accept that there is nothing I can do other than follow medical instructions to reach that goal. I am a perpetual optimist, but I'm also a very down-to-earth realist.

Trust me, people. You don't have an "inside track" on how to treat metastatic breast cancer. Do not think you know more about this disease (because that survey showed that most people do not) than the patient. Lay off sharing the "secret" cures you read about on the Internet, assuming that your friend, the cancer patient, has no knowledge of.

Quackwatch.org has some excellent material to help you sort the wheat from the chaff.

"Proponents of questionable methods typically claim that marketplace demand and testimonials from satisfied customers are proof that their remedies work. However, proponents almost never keep score or reveal what percentage of their cases end in failure. Cancer cures attributed to questionable methods usually fall into one or more of five categories:

The patient never had cancer.
A cancer was cured or put into remission by proven therapy, but questionable therapy was also used and erroneously credited for the beneficial result
The cancer is progressing but is erroneously represented as slowed or cured.
The patient has died as a result of the cancer (or is lost to follow-up) but is represented as cured.
The patient had a spontaneous remission (very rare) or slow-growing cancer that is publicized as a cure.

"Promoters of questionable methods often misrepresent their methods as "alternatives." Genuine alternatives are comparable methods that have met the criteria for safety and effectiveness. Experimental alternatives are unproven but have a plausible rationale and are undergoing responsible investigation. Questionable "alternatives" are unproven and lack a scientifically plausible rationale. When referring to the latter, we use quotation marks because they are not true alternatives. Some promoters of "alternative" methods are physicians or other highly educated scientists who have strayed from scientific thought. The factors that motivate them can include delusional thinking, misinterpretation of personal experience, financial considerations, and pleasure derived from notoriety and/or patient adulation.

"Misinformation about questionable cancer therapies is spread through books, articles, audiotapes, videotapes, talk shows, news reports, lectures, health expositions, "alternative" practitioners, information and referral services, and word of mouth. Promoters typically explain their approach in commonsense terms and appear to offer patients an active role in their care: (a) cancer is a symptom, not a disease; (b) symptoms are caused by diet, stress, or environment; (c) proper fitness, nutrition, and mental attitude allow biologic and mental defense against cancer; and (d) conventional therapy weakens the body's reserves, treats the symptoms rather than the disease [6]. Questionable therapies are portrayed as natural and nontoxic, while standard (responsible) therapies are portrayed as highly dangerous."

Following the link above will take you to a list of the more common "cures" suggested to those with cancer. Remember ... over 60% of people surveyed admitted they knew little to nothing about metastatic breast cancer, yet 50% of those surveyed believe metastatic breast cancer is the result of the patient not taking the right treatment or not following the proper preventive measures. These are dangerous numbers.

Ignorance is not bliss.

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THE BLAME GAME NEEDS TO STOP NOW!

6/24/2015

24 Comments

Warning ... this is a rant post.

I'm sick. I'm sick and tired. I'm sick and tired of hearing blame being heaped upon the metastatic breast cancer patient, making them feel as if it is their fault they have this disease.

We are assaulted on all sides. Questions and statements like, "Well, didn't you have your mammogram?" or "What is your family history?" or "You shouldn't have eaten at McDonalds." or "I told you that Coke Zero was bad for you!" or "Should you be eating that?" or "Should you be drinking that?" or "What does your doctor say about your weight?" or "Shouldn't you lose a few pounds?" or "I'm not sure that's a good idea for you in your condition." or "Have you tried this?"

The list is endless.

But what peeves me off more is when I listen to a PATIENT blame herself for the disease. As a volunteer cancer mentor, I have heard newly diagnosed patients say the following:

"I gave up meat two weeks ago and I've increased my vegetable intake."

"I'm seeing a naturoapth to get me going in the right direction."

"I'm going to a Zen center to detoxify my body."

"I'm taking Chinese herbal medicine, regardless of what my oncologist says, because it's the right thing to do."

"If I hadn't gotten a divorce, this cancer would have never happened."

"I had so much stress in my childhood, that cancer was inevitable."

"If only I had lost 20 pounds after having my children, then cancer wouldn't have occurred."

"I shouldn't have put off my mammogram."

"If only I juiced more."

"I'm taking all the vitamins and supplements I can get my hands on because they can't hurt."

"My budget for natural items has doubled now that I have cancer."

"I'm not sure how to correct what's wrong in my life in order to cure this metastatic disease."

"I can't afford to buy the juicer I need in order to combat this disease."

"My cancer was caused by years of unhealthy eating and drinking habits."

"I shouldn't have had that root canal."

"I shouldn't have eaten fish."

"I should have drank more green tea."

"This is what I get for not being positive enough."

"I didn't learn from my early stage diagnosis. If I had changed my life, then I wouldn't be Stage IV now."

Put bluntly? This shit needs to stop IMMEDIATELY. RIGHT NOW.

Repeat after me: "IT IS NOT YOUR FAULT YOU HAVE METASTATIC BREAST CANCER!"

In 2014, Pfizer conducted a large survey and 50% of respondents believed that patients became metastatic because they either didn't follow the right treatment protocol or because they did something wrong (i.e. take the correct preventive measures).

FIFTY PERCENT!

Where did this come from? When did we become so comfortable with blaming someone for the fact that they have a deadly disease? When did we become comfortable with blaming ourselves? Is it because of the myth of the pink ribbon? Is it because we are bludgeoned with the triumphant message of "Early detection saves lives!" thus feeding the frenzy that if you are diagnosed with late stage disease then you must not have been listening?

Is it because every October we are inundated with pictures of the triumphant person waving pink pom poms, shouting, "I am a survivor! Because I am a survivor that means I must have done something right!" (Okay, I've not heard that said, but is that the insinuation?)

Or is it more because we are comfortable in our perceived roles of Masters of the Universe and that we somehow failed in that job by getting cancer to begin with much less, metastatic disease?

It's bad enough that outsiders blame us for cancer. However, it greatly grieves me to hear a newly diagnosed patient of any stage wrack her brain to determine what it was that caused the cancer in her body. Often, a newly diagnosed patient will spend hours scouring the internet looking for the possible reasons to explain away the cancer. Many newly diagnosed patients will trust something they read on the internet more than they trust conventional, clinically proven scientific research, because they are desperate to know the whys and wherefores.

It gets down to this: WE DON'T KNOW WHAT CAUSES BREAST CANCER!!!!! If we did, then we wouldn't lose so many women (and men) each year. It is not a simple matter of clean happy living in order to prevent it or to cure it.

I know women from all walks of life who have this damned disease. Rich women, poor women, women who eat meat, women who don't eat meat, women who are endurance athletes, women who are sedentary, women who are thin, women who are overweight, young women, older women and the only common factor has been their gender. I do know of one man who had breast cancer ... a Chinese man at that! ... but that was years and years ago and he is still living.

Stop blaming yourself. It's not your fault. And everyone else? Stop trying to find a reason why your beloved has cancer.

And more than that, stop feeling so smug about your own superior lifestyle choices because it's obvious that those choices are so much better than the metastatic breast cancer patient's choices, because, after all, you don't have cancer. (In case you can't tell, that was written in the hidden sarcasm font.) When you ask those crazy questions (such as "Are you sure you should be eating that?"), you are insinuating that you have inside greater knowledge over what is best for your non-cancer self and for your cancerous family member/friend. Same goes for those "cures" you read about on the internet. Just stop sharing them now.

THE BLAME GAME
NEEDS TO
STOP NOW!

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The new game plan

6/19/2015

4 Comments

Sitting on a patio in SF, waiting for my next appointment. The pin on the jacket is for Metavivor, a non-profit who puts 100% of their donated funds to metastatic breast cancer research.

Whenever there is disease progression, you can be guaranteed there will be a flurry of activity as a new plan is put into place. While we expected my latest scans to show progression, we didn't really expect it where it showed up! Therefore, most of what was discussed before the scans as possible treatments were set aside in order to react to what was reality.

First of all, God is good! The fact that this disease is moving throughout my body doesn't change his goodness. I don't pretend to understand what's happening and I have tons of questions, but I do, to the core of my being, believe in the saving grace of my loving Savior.

Next, I'm grateful that the disease progression was in the bones. Yes, it's painful and irritating, but it's not life threatening. This isn't to dismiss others who are dealing with organ mets ... but simply an acknowledgement on my part that things could be a whole lot worse at this point in time in my life, but they aren't. Lots of thanks for that.

Thirdly, while I am happy with the response I had during the 13 months of Xeloda, I'm not going to miss that drug at all! It will take a month or more for my hands to return to normal. I won't miss the peeling, cracking, blistering side effects at all.

Moving on to what's next. I am back on a hormone treatment (Femara/Letrozole (most drugs have two names) ) which is an easily tolerated oral drug. One tiny pill every day, day in and day out. I was also approved by the insurance company for the new drug Ibrance/palbociclib. Big thanks to my medical team at UCSF for going to bat to get approval after the insurance company gave its immediate rejection without reading any of the documentation submitted with the request. Ibrance is also an oral drug, taken three weeks on/one week off. I will start it tomorrow. The most common side effects are neutropenia (low white cell counts) and hair thinning. Just in time for summer! Letrozole alone has a average progression free efficacy of about nine months, but when combined with Ibrance, jumps to 21 - 24 months. I'm hoping and praying that I will, once again, be an outstanding responder and get those 21 - 24 months or more.

The tumor in my hip socket takes up 60% of the transverse diameter of the femoral head, placing me at high risk for fracture. While I am classified a high risk, this does not mean I'm at imminent risk. However, we're going to zap that bugger with radiation, just like we did with the neck tumors two-and-a-half years ago. I will have 20 radiation sessions beginning July 13. In the meantime, I have to use a crutch to reduce the weight placed on the hip. I'm getting better at using it ... and my hand is toughening up. I got a blister on the palm of my hand after one day, but it's already calming down.

The reason for the delay in starting radiation is because we are taking a family vacation July 1 - 12. While we could have tried to reschedule everything, the entire medical team didn't think there was a serious problem with my taking the trip as planned. (There's more than one family involved in the trip.) However, for the first time, my travel wheelchair will actually travel with me! We purchased it three years ago to help with Art's mother when she came to visit and since that time, it's been loaned out for several other people to use. It's been to southern California (twice!) and to France and now it's going to Mississippi and Florida! Woo hoo! I should keep a mileage log for it.

I've been to San Francisco four times in ten days -- I've seen three oncologists and spoken to two others on the phone; spent hours on the phone gathering information and pulling things together; arranged for radiation to happen only one mile from my house and got copies of all my scans and reports to that location. That's the big flurry of activity, but now it's done and everything has settled down. My next appointment is June 30 for radiation simulation (where they map out exactly how they want the rays to go).

Rachel is in Mexico with the church youth group and Michael is hacking his lungs out as he started his summer vacation with a cold. Today is the first day he got out of his pajamas. Poor guy. He is doing better now. Art continues to work hard to provide for us and it's always a joy to see him at the end of a day.

I'm now getting ready to make some granola. Yes, you wish you had some! :D After that, I'll write out some more of Judges ... I'm up to Samson now.

Thank you again for your ongoing support. It means a lot.

"So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever." (2 Corinthians 4:16-18, The Message)

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Disease progression ... it's not about the breasts

6/12/2015

1 Comment

The top two photos are from July 2013. The bottom two are from June 2015. They are all of my left hip socket.

I've been living with terminal cancer for three years, four months and three weeks. Yes, I keep track!

I was diagnosed January 20, 2012 with what was thought to be Stage IIIb breast cancer. When cancer was discovered in every single vertebrae, in both sides of my pelvis and in one rib on January 2, 2013 (along with a broken vertebra in my neck), my original diagnosis was changed to Stage IV. There was no way *that much cancer* could be a mere recurrence, but was previously unseen disease. Please note that this is not bone cancer, but breast cancer that spread to the bones.

In July 2013, a new lesion formed in my left hip socket, as well as in a couple of more ribs and in my sternum. Time for a treatment change and on to the clinical trial in November 2013.

I had no progression until May 2014, at which time the cancer spread to the liver. No, it's not liver cancer, but breast cancer that spread to the liver. Treatment change time again.

I have been progression free on that treatment until now. My tumor markers have been slowly creeping up since December and we all expected to see the cancer return to the liver. However, we were all a bit surprised to see progression in the bones ... something that hasn't happened in two years. The hip lesion is way more active and there are two new lesions at the top of my left hip. Fortunately, this is not having any negative impact on my blood work.

Time for another treatment change. I'm happy to say that there are lots of options left in the bag and I am now on an oral hormone treatment (Letrozole) in combination with a newly approved drug (Ibrance - once I get insurance approval for it). Clinical trials have shown women to have 21 - 24 months progression free while on this drug combination. Once again, I'm hopeful that the cancer will be highly responsive as it has been in the past.

But notice how there is no talk of my breasts? That's right ... my breasts remain cancer free. This whole deal about "save the boobies" doesn't really apply. In spite of my having regular mammograms, ultrasounds and clinical visits, I had Stage IV metastatic disease from the get-go. It never was about the breasts.

It's about saving a life. Or, saving 40,000 lives a year in the US alone.

I'm grateful for the added time. I know I'm not guaranteed another two years because I'm not even guaranteed tomorrow. However, I'm grateful. I'm hopeful that the pain will soon dissipate under this new treatment and that I won't need radiation. However, if I do, then so be it. It would be to a very small, targeted area.

The pictures above of my left hip socket are the focus of treatment planning. I will have an MRI tomorrow morning to determine if radiation is needed or if any surgical intervention is needed.

As far as bad news goes, this is the best kind of bad news to have. While painful and irritating, these bone mets are not life threatening. While unusual to have such an increase in bones while organs remain clear, my oncologist noted that that's what cancer does ... it keeps you guessing. It's nothing she hasn't seen before.

So I'm pressing on to another day, hopeful to be loving, grateful for the chance to be my flawed self. I'm still trusting in God's goodness in spite of bad news. My life is his anyway, regardless of the number of days. I'm just blunt enough and honest enough to say I want more of them.

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Survivor?

6/8/2015

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Photo by Selbe of a Universal Studios plane crash set. Creative Commons license. Not for commercial use; not an endorsement of my writing.

There's a lot of talk going on in Cancer Land right now over the use of the word "survivor." Sunday, June 7, was National Cancer Survivor Day here in the US and it has stirred up a lot of emotions.

Personally, I don't use the word. To me, a survivor is one who, ahem, survives a traumatic event. This means that the event is a part of their history and they move on with their lives in the best manner possible. Many survivors have to deal with post traumatic stress disorder as they try to adjust their lives after the event, but many don't.

Cancer will never be a part of my history. It will always be a part of my present. Because of this, I don't call myself a survivor. I call myself a patient, or someone living with terminal cancer. It's my reality.

However, I'm learning to relax and to not worry so much about what others call themselves. If someone else living with cancer chooses to call herself or himself a survivor, then go for it. Until this morning, I didn't really understand why someone living with terminal cancer would ever use such a word, though. Don't they know it's going to kill them?

This morning I read a blog post in which the writer, in describing her objections to the word, survivor, brought up the illustration of a plane accident. That if a passenger in a plane crash lived for two days after the crash, the passenger wouldn't be called a survivor. The passenger would be a fatality, even though the death didn't happen immediately upon impact. Statistics would show that death as a direct result of the crash.

Reading that set off the hamster wheels in my head. What if the passenger lived three years past the accident? That person would most definitely be counted as surviving the plane crash, even though the injuries received ultimately resulted in death. No one would go back and revise the statistics for that crash to reflect an additional loss of life. Same goes if the passenger lived for five years, ten years or even twenty years.

The passenger would be called a survivor for however long they lived after the accident.

James Brady, President Ronald Reagan's press secretary, lived 33 years following a gunshot wound received in an assassination attempt on Reagan's life. His death in 2014 was ruled a homicide ... a direct result of the injuries received more than three decades earlier. Throughout those 33 years of life, Brady was consistently and constantly called a survivor of the shooting.

Perhaps it's all in knowledge. Perhaps James Brady never knew his death would be a result of his injuries. Perhaps he thought he'd die of old age or another illness.

The plane crash survivor with severe injuries always holds out hope that recovery will ultimately be a part of the story. They live each day with the realization that they survived something that may have killed everyone else on board. They don't necessarily know they are going to die as a result of the injuries.

The terminal cancer KNOWS they are going to die as a result of the disease invasion.

It's hard for me to call myself a survivor knowing that my death is most likely in my near future rather that in my distant future. I always have hope that the next treatment will be the one to repress the cancer for an extended amount of time, but the odds are stacked against me. Even if my death is in the distance, the reality is still there ... I'm most likely going to die sooner than most people of my current age.

But I can see why some people would want to call me a survivor. It's a comforting word that inspires hope. It doesn't change my reality, but it helps others feel more comfortable with my reality.

I have to live with the reality of my death every single day. I am surrounded by people who know me and who love me, but the vast majority of them don't think of me in terms of having terminal cancer. Because I'm doing reasonably well now, they blithely make plans for my future with the same casual confidence that they make plans for their own futures. They think nothing of my participating in events that are months away because they simply don't understand that if I'm not dead at that time, I could be severely limited in what I can do.

There is another term that is going around ... a "lifer." When someone is convicted of a crime and sentenced to life in prison, then that prisoner is known as a lifer. Perhaps that's me ... someone who has been sentenced to cancer (through no fault of my own!) for the rest of my life, with slight chances of parole (successful treatments). I'll have to think about that one.

Quite frankly, when I think of my life in terms of the time line of eternity, it's just a little, teeny, tiny dot on the spectrum. It really doesn't matter if I live 55 years or if I live 155 years. What matters is if I actually LIVE.

And that's my goal. I have cancer that will kill me (unless that proverbial bus comes first!) but I have today in which to live ... and love ... and live ... and laugh ... and live ... and cry ... and live ....

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Yet they have all the answers ...

THE BLAME GAME NEEDS TO STOP NOW!

The new game plan

Disease progression ... it's not about the breasts

Survivor?

God's Story

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