On metastatic cancer: A response to “As I Lay Dying” by Laurie Becklund

A response to “As I Lay Dying” by Laurie Becklund

By Deb Davis

            Ms. Becklund writes of her exposure to the world of metastatic breast cancer.  She writes with great emotion and feeling about things on which most people would rather not dwell.  She tells of her own experiences as a breast cancer survivor, and as a breast cancer fatality.  She writes about the realities of metastatic breast cancer. Her words and her story mean a lot to me, because I, too, am a metastatic breast cancer patient.

            Cancer is a terrible disease in all its forms.  When the doctor says cells are malignant, the patient learns that something evil has invaded her body.  For some people, that evil is encapsulated in a few cells (in situ) and can be removed.  Some people think of this as the “melon ball scoop” gathering the bad cells and some surrounding good ones and calling it clear.  Cancer patients learn to listen and watch for NED – No Evidence of Disease.  Any good investigator knows, however, it is nearly impossible to get all the evidence. 

            I take issue with Becklund: “I had more than 20 mammograms, and none of them caught my disease. In fact, we now have significant studies showing that routine mammogram screening, which may result in misdiagnoses, unnecessary treatment and radiation overexposure, can harm more people than it helps.”  Her summary statement, “early detection does not cure cancer” is both right and wrong, in my experience. 

            From what I have seen, nothing cures cancer.  Cancer eats at whatever it touches. The purpose is not to cure cancer, but to kill it.  Research has been geared to killing the cancer and trying to limit killing healthy tissue in the process.  When I was diagnosed, I was advised that there were basically five ways to kill cancer cells – remove them from the body, flood them with poison, burn them to oblivion, starve them of the hormones on which they feed, and take the risk to medically restart the body in a hope that they are toxically destroyed (think smoke inhalation).  This translates to surgery, chemotherapy, radiation, hormone therapy, and a bone marrow transplant.  Any of these can be deadly to the patient, and I had them all.

            My cancer was diagnosed in a metastatic state.  For anyone who has not read Becklund’s article, I recommend it as thought-provoking and hopefully discussion inducing.  I don’t have to agree with her to respect her journey.  She had early diagnosis.  She had early treatment. She was called “cured.” She died anyway.  The problem is, as she succinctly states, breast cancer in and of itself is not deadly – it is the metastases that kill – to lung, to liver, to bones, to brain.  The evil confined to breast tissue would not cause death but, like most insidious things, it doesn’t stay there.

            In a space of less than two weeks, my tumor went from barely noticeable at self-exam to 5x15x10 centimeters.  Yes, that is about 2x4x3 inches.  Picture the end of a tissue box, go in until the gap where the tissues are pulled. Cut that end off.  Imagine that inside the tissue of the right breast.  It doesn’t stay there.  Even a large bosomed woman would notice something that size, and I was only about a 34B at the time. 

            Most tumors grown in layers around a knot.  They are kind of like a ball of twine, growing at their own pace, and winding larger and larger. When they run out of space, they send tendrils through the lymph system, parallel to the blood circulatory system, and look for a new place to settle in and grow. For breast cancer patients, that is often the other breast. Inflammatory cancers grown in sheets.  They spread their insidious tendrils in all directions, constantly. This is why inflammatory breast cancer is metastatic at diagnosis.  By the time it is discovered, since there may be no lump, it has invaded the skin, the lymph system, the muscle wall, the lungs, and the bones. Mine did.

            Within a couple of weeks, I was on chemotherapy. After months of that, I had surgery (bilateral mastectomy). Then, I had more chemotherapy. I underwent and autologous stem cell replacement procedure – my own marrow was extracted and cleansed; the remaining was killed off; and when my blood marrow counts were zero, I was given back my own stem cells. After that it was weeks of daily radiation with a magnified bolus to the skin leaving burn scars across my chest wall and through to my back (yeah, imagine what my lungs look like). Then, having estrogen positive tumors, I was put on hormone therapy to starve them – for ten years. Now, when a tumor is found, it is directly injected with chemo, and I go on my way. I choose not to have any systemic treatment again. That is my choice. So, when my cancers go metastatic again, I will die.

            There are millions of people out there who get early detection of breast cancer through self-exam, through annual screening, and through mammograms.  Some will be misdiagnosed and not have cancer at all. Others will have side effects from the screening process. That is always a risk. I, however, choose the risk.  For me, and for anyone who knows me, there is a mantra: What are the consequences? And is it worth it?  The consequences of radiation exposure through mammogram, ultrasound, MRI, CT, and PET are far less than the consequences of unimpeded cancer running rampant through the body.  Some of those who get early detection will have isolated treatment and live their lives in a state of remission, without active cancer. Some will have it return.

            I was recently told, by an oncology fellow, that my cancer protocol did not work – period. The protocol was unsuccessful. It did not rid the body of active cancer. I sat there waiting for the doctor to explain the whys and hows of this statement.  There was no answer. So, as is my nature, I decided to pursue a line of questioning: What do you mean it doesn’t work? Is there a flaw in the research protocol? Did the hypothesis prove faulty? Was it ineffective in terms of balance? He responded simply that it did not result in a state of cure – patients did not survive the requisite five years.  I was astounded.  I asked him why I was still there. He was confused.  If my protocol did not result in survival, how could I possibly be alive some 17 years after diagnosis. Well, he had no answer.  He had no answer because there is no answer.

            I have since learned there was a flaw in the research. That is why my protocol was set aside. The women who had my protocol have survived. We are bruised, beaten, burned, and torn. Our self-image is shattered every time we look in the mirror. We suffer from age onset illnesses 25-years beyond our age. Still, we get up in the morning. We take our pain pills, and our blood pressure pills, and try to eat right and exercise. We see our doctors on a regular basis. When we feel a swollen spot or a strange pain, we wonder, “is it cancer?” We get all our screening tests. We make our choices based on our perceived consequences. 

            There is no reason why I am alive and Becklund is not. There is no answer to the “Why me?” that runs through every cancer patient’s head. There is no solution to this trauma. There is no cure.

            I have known there would be no cure from shortly after my diagnosis. I spent the first few days learning all I could. This was before the days of ready internet access. This was when inflammatory breast cancer was a one paragraph statement in the old Susan Love book of Breast Cancer.  But, I was diligent, and I learned.  I truly expected to die. I would either die from the illness, or from the treatment. I may yet. 

            I’m sorry Becklund had to travel this path. I’m sometimes sorry that I survived and she didn’t. That is a classic symptom of survivorship. I, however, do not agree that awareness is useless, I just think it needs broadening.  The inflammatory breast cancer research foundation publishes pamphlets and other information modules telling the world that “it doesn’t take a lump.” Maybe it isn’t that awareness is a problem, maybe it is too limited.  Women do not know to look beyond a lump – to check for a leathery or rigid feel to the skin – to watch for warmth or swelling.  Doctors don’t always know either.

            Another one of my philosophies is that we all live in a series of bell curves.  In any given group there are a few people who are brilliant at the purpose of the group and a few who are anti-brilliant for that group. Most fall somewhere in the middle.  Those who are brilliant at one thing are apt to be utter failures at another.  The same is true, even among oncologists. The oncologist that told me my protocol failed was at the bottom of a bell curve, wherein I was at the top – my experience gave me a boost he simply could not see in all his book learning. 

            To stop awareness drives like Komen is to drop out of the learning cycle. There is no cure for cancer, but there are better ways of treatment than there were. To wear a pink ribbon seems trite, but someone may ask a question about it that leads to someone else learning something new.

            Today, I say, wear a ribbon if you want. Go join a Komen run. Attend Relay for Life. Be glad to be alive. Know that cancer is as much a part of life as any other ailment or illness. Support causes you believe in with your whole heart. Travel. Explore. Educate yourself. Live your life. It’s the only one you have.

A response to “Explaining White Privilege . . .” by Gina Crosley-Corcoran

Blog – A response to “Explaining White Privilege . . .” by Gina Crosley-Corcoran

That Crosley-Corcoran posts on a site called thefeministbreeder.com inferred I would not agree whole-heartedly with the comments made, and I did not.  However, in my attempt to be open-minded enough to understand other’s views while not letting my own brains fall to the side, I read the article.  Then, I read it again.  This author has a wealth of experience to apply to the issue at hand.  Having grown up as a white person of poverty, Crosley-Corcoran did not understand how anyone could consider that upbringing as privilege.  I, too have issues with presuming privilege based on skin color.  So, though I had read it before, I returned to McIntosh’s article, “"White Privilege: Unpacking the Invisible Knapsack."  While the link in Crosley-Corcoran’s article did not work, the article itself was easy to find. 

Maybe my middle-class upbringing in suburban California was a foundation for personal respect that blinds me to these concerns.  Maybe it is my twenty years in the Marines that made me think of skin color as no more defining than eye color or height. Maybe it is the sure and certain knowledge and belief that there is a God who loved me enough to die for my sins, and that the same is true of every person regardless of skin color. I still don’t get it.

According to the Oxford English Dictionary online, privilege is:

A right, advantage, or immunity granted to or enjoyed by an individual, corporation of individuals, etc., beyond the usual rights or advantages of others; spec.  (a) an exemption from a normal duty, liability, etc.; (b)enjoyment of some benefit (as wealth, education, standard of living, etc.) above the average or that deemed usual or necessary for a particular group (in pl. sometimes contrasted with rights) (OED, 2016).

As an example, McIntosh says, “6. I can turn on the television or open to the front page of the paper and see people of my race widely represented.” I know that there was a blow-up last year about race in the academy awards, but the issue I don’t get is one of reverse-privilege. It seems strange to me that it is okay to have Black Entertainment Television (BET), and special awards for folks who are black, or disabled, or have sexuality identification labels. I believe that there should be an equity that identifies people as great actors not because of their skin color, but because of their great acting. I have also noticed, that it has become such a sensitive issue that the only person-type about whom fun can be made is the heterosexual white male. Truly, in any group, there are going to be those who exaggerate the stereotypes of the group, and those who defy them.  Honestly, I’m more a believer in the bell curve.  There will be a few bright shining stars, and a few repressive dolts, and by and large the rest of us are somewhere in between. 

McIntosh sums up the comment list with “21. I am never asked to speak for all the people of my racial group.” I have. While in the Marines, I sat on several “boards.” For those who do not know, boards are committees who meet to make decisions after review – promotion boards, disciplinary boards, etc.  I often was selected for boards because someone’s ultimate wisdom had decreed a bunch of categories to ensure diversity on the boards.  I met many categories:  white, female, field grade officer, prior enlisted, educated, etc.  Because of my own diversity with the Corps, having started as a regular Marine Corps Recruit at Parris Island and retired as a field grade officer in the reserve Marine Corps, I could understand many issues of the parties represented to the board.  It did not hurt that while enlisted, I had been married to an enlisted man who died, making me an “unremarried widow” for benefits allocation. It also broadened my perspective when, as an officer, I married an officer. So, I understood the relationships relating to spousal influence.  I have been asked to speak – to represent one of the many groups into which I fall.  We all have, whether we realize it or not. 

Every time I open my mouth, I represent my white, middle-class, California upbringing.  Every time I open my mouth, I represent the Marine Corps – enlisted and officer.  Every time I open my mouth, I represent college professors, Christians, dog owners and any other category into which I could be placed.  While I deem it a privilege to be a natural-born American citizen, I have great respect for those who attain citizenship legally, and equal disdain for those who push through illegally.  In my mind, those people are criminals.  There is a place in my heart, however, that reminds me that Jesus died for them, too.

Some of the things on McIntosh’s list are true for everyone, and some I think do not apply to everyone regardless of the group.  Goodness knows, there are issues of concern in relationships. Goodness knows, that in today’s political climate of unrest, there are those who should be concerned.  I believe, however, that most of the issues are inflamed by a militant media who would take a small percentage problem and instead of allowing it to be handled quietly and locally, inflame those who would listen until riots and outbreaks occur.

It is not a matter of privilege to treat others well.  It is a matter of respect.  Yes. I grew up in a drastically predominately white neighborhood with a dog and a cat and a two-car garage. Somewhere, however, in my California public school education, I learned that all people should be offered courtesy, and that respect should be engendered until it is abused.  I learned that regardless of the color of skin, everyone bleeds red.  I learned that honor and integrity have no color. I learned that hate comes in every color, but so does love. I learned that it takes a generation or two to change people’s views.

I also learned that people tend to abuse privileges that they are born to because they haven’t earned them. I believe that feeding wild animals makes them dependent. I believe that the same is true of the welfare issue.  I believe that truly transgendered people are not the ones making a fuss over bathrooms as truly transgender people would choose to quietly live their lives and not bring attention to themselves any more than anyone else. I learned that there are a few political loudmouths who are given more credence than they warrant. I learned that my opinion and yours, whoever you are, should be listened to respectfully and considered.  I learned that every day we can learn a little more if we choose to do so, and in doing so, we will broaden ourselves. Alternatively, we can narrow our insights to where we don’t even see options in other views. 

I can and do respect Crosley-Corcoran for reaching beyond the poverty roots. I can and do respect McIntosh for a thought-provoking essay from 1988.  Just because I don’t think white privilege means I have to denigrate my own history does not mean I do not think every other person deserves my courtesy. It means that, in my view, we as a people have worked so hard at making up to a people who were once treated poorly that we are no longer construed as “created equal” but as somehow deficit, simply do to a lake of melanin in our skin. How I treat people reflects on me. How others treat me reflects on them. It isn’t a matter of privilege. It is a matter of respect.

The Beginning

As the good Charles Dickens once penned for David Copperfield, “to begin my life at the beginning of my life, I record that I was born . . . .”  To say such may seem redundant, for among the merest of mammals, birth would be the beginning and the mammal in question would not exist to tell a tale had she not been born.  However, as with most, the tale begins before birth though that portion which does not pertain directly to early childhood will be omitted for now and returned to later. 

I was born, as previously stated.  Late one evening, apparently a Wednesday, my mother labored briefly before I made an appearance.  She states that I was born holding my head up as she had been taking calcium shots during the pregnancy to stave off leg cramps.  While that may be a brief exaggeration, she has also noted that upon returning home the next morning, my father had to go buy crib bumpers as I could and did scoot along the mattress and they feared I would harm myself.  It would seem I have been moving ever since. 

Oh, I suppose in my early youth there were times of quiet, but they seem to have been imposed upon me do to my own action.  I was quite young when I found myself at the bottom of the pool, staring up through the water at the bright blue sky.  I had wanted to reach for a ball that was floating, and being but a toddler, I fell into the water.  My father was unaware I had followed him into the pool yard as he had gone to get some tool or such.  Fortunately for me, he had been a lifeguard in his youth, and was able to retrieve and revive me.  He has often said that if looks could kill, my mother would have struck him dead when she saw him crossing the yard with me, and both of us dripping wet.  There were no long term repercussions from my early water experience, as I became a bit of a water rat in my growing up years.

Assisted Suicide

When I taught argumentative writing, my students had to write an essay on which the topic was "an issue of social concern about which reasonable people may differ, and about which you feel passionately." Inevitably, someone would choose assisted suicide. However, on the next essay, they were required to do the research and write an argument in opposition to their prior essay. Generally, those who wrote in favor of assisted suicide were at a loss.

However, I would steer them into a reminder of decision-making until they realized the slippery slope of this issue: if it is acceptable to allow someone suicide, the value of life itself is diminished AND another is given the ability to make the choice. Where then, does that choice end? Is it parents deciding for children; children deciding for parents; spouses making a choice; or the state or courts making the choice. Eventually, in issues of conflict, the courts decide. That means that the state has made the choice.

It all boils down to value: what are the consequences and is it worth it? If the state is making these choices, eventually, the fiscal cost of maintaining life will overcome the intrinsic value of life itself. Then, the value starts being rated against contribution to society. Wow! When the Affordable-Care-Act was being touted, I received a letter from Medicare explaining that the costs of my monthly medication was too high and I could anticipate them being terminated. I was not yet 50 years old, and was told I cost too much. My 20 years of service to the Marines has protected me, but it is a mental blow to be told your life is not worth as much as the medication to keep you alive.

So, do we choose to actively kill those who cost too much and who do not contribute in someone's eyes? And what gives that someone the right to make that decision. If the state is making a cost-benefit-analysis for us, then we need to do some research into Germany, China, and other social-communist history states wherein the state decides that the old, the infirm, or the somehow less than perfect must be destroyed. Where then is the cutoff point?  Is it at age 50? It is when someone is on life-long meds for hypertension or diabetes? 

I don’t know the answers.  I know that my God put me here for a purpose, and as yet, I must not have finished serving it or I would not be here as the opportunity for my death has been stymied too many times.  I know this article scratches the surface of a horrible truth – that we are selfish beings, and in being so, our intrinsic value is also reduced.  Truly, in our humanity we have little enough value.  But, in our ability to do good, to help others, and to worship God, we have no reason nor authority to do ill to anyone who is not first doing it to us!