Principles of Medical Ethics 

Before You Donate

Think very seriously before donating to any breastcancer organization, or fundraising program until you read their Annual Report to see who their top contributors are, and if they have a product that appears frequently in the message the organization sends to the public. That would be unethical and its illegal. The same applies to a request that the public buys products, but does not receive a "donor receipt" for tax-deductible purpose. Read any and all food labels that breastcancer "non-profits" are promoting to raise money. Some organizations tell the public to help them raise money by asking you to visit their websites, but that only gives them "hits" to increase their sponsors.

Another tip, "signing" an online Petition is not acceptable, so don't fall for such antics. An ethical non-profit, or professional will not request your visit to their website, nor use "cookies" placed on your computer when you visit their site.

Purchase the Breastcancer Postage Stamp, the Post Office will always give you your charitable deduction receipt. Its a valid form of fund raising.

"What was wrong with my mammogram?"

"I have breast cancer?"

Are you sure?  Who else can I ask?

CONTENTS: First Stages

1. Introduction
2. Intro-II
3. Hearing the Word "Malignant"
4. Denial - What it felt like to try to cope with it
5. Denial-II
6. When Does The 'Fight' Begin?
7. Losing Confidence-a memorial to Margaret Baillargeon
8. Support-Spiritual, Prayer-Experience-Giving it away!

I have had five surgical operations and a biopsy since May, 1998 (note:it ended up to be 10 in three years). I've been to three major regional medical centers and The National Institutes of Health in Bethesda, Maryland has reviewed my tissue blocks, and slides at no cost to me. All pathologists agreed but the first breast surgeon I saw gave me an entirely different story.

I have worked hard to prepared my mind and my body to take and cope with chemotherapy. I trust my Team completely. After my second surgeon did my first complete mastectomy, my oncologist at SW Regional Cancer Center in Austin, Texas, became my team leader and I would not trade this doctor for anyone or anything.  He's been my link to comfort, relief, reality, sanity, and affirmation since mid July, after we learned my nodes were involved (I had been assured there was no possibility of "mets to the lymph nodes" but I knew better).

And, now to be perfectly honest with you, my psychiatrist is moving into that "chair (much to my oncologist's delight, I'm sure [smile]." For some unknown reason, medical doctors (MDs) are loath to bring in psychologists/psychiatrists when they render a potentially fatal diagnosis, and breastcancer is one of them. I now believe they are afraid of their own psyches. So consider seeking psychological support early.

More on that later. . . I do not want to diminish the important role my radiologists and pathologists have played during this time. It became imperative after my first experience in another city, that I had to know these professional physicians, and trust them, and they had to know "where" I was at most points on this journey to save my life.

The key to survival is early diagnosis, appropriate biopsy procedures, if needed, and a carefully decided upon protocol for treatment that your oncologist and you believe agree upon, based on date the oncologist will present to you (shy away from "new" data or short term data, and "trials" unless your Team can positively tell you that you don't have much chance of fighting cancer with reputable protocols (methods)—don't fall for radiation—either its in question now, and has been for a long time—unless the nuclear radiologist will write you a statement that s/he will be able to target only the tumor or cancer cells, not your lungs, spine, heart, liver, etc. (no, I refused radiation in 1998).

The patient must be included as an active member of the team, if that be the patient's choice.

However, do not ever take on this "CANCER." I realized late in the process that I was experiencing cancer, it was NOT mine. I refused to take any ownership of it. I only wanted it OUT of my body—first and foremost. That at times left me feeling like a little child trying to get my tongue off of my frozen sled. But, I hotly deflected the cancer cells and I wanted the pathologists to tell me what they saw around the cells, that is why I wanted an Oncologist who was also board-certified in hematology.

Were there indications that my body was fighting this cancer? Lymphocytes for example, as there would be if we cut our finger? How many lymph nodes did I have?  Did they indicate the severity of the malignancy (at that time no one knew, today they do) because I believed my body would increase the number of lymph nodes to protect me. Go with your gut—and find someone to help strengthen you, too "You cannot do anything wrong (Ron Anderson, MD)."

One of the most difficult aspects to this disease is one day you think you're healthy and the next day you are fighting for your life.

And worse, you may be fighting it for the rest of your life. There is no such term as "in remission" with breastcancer. There are no objective, clinical analyses to evidence it is gone from your body. If there were, then "in remission" is a term that could be used.

With most other diseases, you know there's something amiss ahead of time. If you're working on your body, and your health, or not, your body has let you down and it's scaring you. There's grief to deal with and for me one aspect of grief was in losing myself: the person I was on May 1, 1998, the activities, my plans for the next quarter, even for my retirement one day, the busy-ness of my life, more imminently, my planned trip to dive with the Dolphins off the reefs in Puerto Rico. Suddenly, it all stopped.

Part of 'me'' was on that mammogram and it was proof that my body was assaulted by something. I could see it with my own eyes. There is was, two (or more) clusters of longitudinal cells, askew, and very macro (not microscopic) calcifications.

Some of us felt that void, and questioned it thanks to our inner voice and love. However, some of us were not fortunate enough to have a radiologist take 'another look,' or even give it to someone else, "to have a look." Such was my case.

Yet two years prior to that, a radiologist at Henry Ford Hospital in Detroit took days to give me a clear report after staying in touch with my internist—he just didn't feel right about it, and when enough others passed muster on it, he finally did. BUT, he was right. Today we have the technology to have found it. Three years ago, we could have found 'it,' had she really read my mammogram. And, I would not be where I am today, nor suffered the losses I have. Worst yet, she wasn't even licensed to practice medicine in Texas, and had been teaching at the medical school in Dallas, with her Chairman's knowledge. Is it any wonder that breastcancer is a killer? Such people are the same. Its insanity.

There is so much to grasp in such little time that you may just shut down, emotionally, and in some ways, physically. There is grief and loss over losing body parts, and eventually not recognizing yourself in the mirror when baldness hits.  That's not all—you are more vulnerable than maybe ever before. Maybe the experience takes you back to other vulnerable times in your life. We just find ourselves in this new body, and in a new existence. Oh, yes, we could cover it up with more surgery and wigs, but how long will that really last, emotionally?

There are new terms to learn, new interactions, new people in your life, who are suddenly supposed to look at your bare body, and touch it, and you are supposed to accept all of this.

Of course we do, but it can be emotional torture to some. We're not encouraged to say anything about "it," and often the medical attendants are far from aware that they are violating us. My oncologist is always thoughtful and, in advance, he still asks me if he can examine me, touch, see, whatever is needed to be done. But too many times, we feel that we must expand our 'boundaries' during this incredible crisis (we don't have to). CHANGE occurs everywhere—suddenly, we realize we are mortal...very, very mortal. We look for God because we are certain that we will hear something miraculous.In fact we expect it.

 I can promise you this, if you do your footwork and chose your Team carefully, you will find the caring, loving, supernatural coming through your Team members. Ask for the universe to sort things out for you.

I remember awaking from my first surgery, and no one said "it."  By 4 a.m. the next day, no one said "it." It soon became obvious to me that they'd found "it" everywhere, and no one was going to tell me. I knew that they 'opened me up,' and closed finding it everywhere just like they did with my little sister. That wasn't the case, BUT no one told me it wasn't.

There was a reason no one spoke to me, though. They had screwed up, royally, and did not chart the incident. But, I had expert witnesses with me.

Someone else may tell you don't have much to worry about! "HA. You tell me I have breastcancer and then, I don't have much to worry about? Are you for real?"  We get asked the same questions, over and over again, and now we can't remember things very well—there's too much data coming in. Suddenly you find out there's also not enough data going out, and you're emotionally frozen. You may have a need to withdraw just to center yourself (eventually you do). Suddenly everything is cancer.  Everyone who knows talks about "it" now, but they still don't say the word: Cancer.

Then, some people tell you that you'll lick this if you only think positive thoughts—you may feel like saying, "Here, let me give this to you. . . the fear, the biopsy, the surgery, the nausea, the needle sticks, the cells—I share. . . " 

Or, you receive 2-3 copies of every newspaper article on cancer or where to go for cures (at least 2 for each place), and you suddenly realize that stress is also related to just learning a new vocabulary. Frankly, finding myself moving into a new psycho-social group was a challenge but also a source of new pain. People bring up the friend they have who "coped with losing her hair just fine. . . it came back in curly!"  Eeeee gads, I hadn't even thought that 'far a-head' yet! In your soul, you cry. . .

"It's not my hair, it's my heart that's breaking, for 'me' and all the others I cannot help right now and are all around me in all the waiting rooms, and these cancer centers." 

And worse, still, I didn't recognize who was in the bathroom with me in the morning —different body, no hair. Yes, my soul cried, desperately. In my case, I'd tried desperately hard to live and survive life, through childhood, and exogenous sources like Polio, Meningitis, and...life.

COPING LESSONS

Try to make your ‘next step’ that which gives you the greatest odds for health and survival.

You have the love and prayers of thousands of those who've walked before you. Visit other breastcancer sites to meet others who've walked ahead of you. Early in this trial, we are just focused on surviving, and often that is interfered with by an uncaring "male medical model" that adversely affect the physicians, nurses, hospitals, and other caregivers. They seem to always put us on the back burner, "until the results come back." You may feel like screaming—I did, and I DID. If your next step is as above, you will scream, and demand that you have immediate responses to your tests....know the results when your doctors know them, meet those analyzing your tests, and be 'in their face' until you know you are being cared for and well-cared for.

Way back on the day of the diagnosis, awaiting the biopsy, I was told by my doctor's office that the insurance company wouldn't authorize the biopsy. I was in the Arboretum in Austin, driving my car, as the doctor's "assistant's" voice came through my cell-phone speaker...I pulled over, fearing I would lose control of the car. I called a nurse friend who put me in touch with "benefits," who in turn contacted the insurance company for me, and I found out they had not received any calls from the internists (or my PCP) office that day—and, more importantly, Anthem (then) always approved a biopsy automatically if the radiologist ordered it, without need for pre-approval. I put my head on the steering wheel and cried again. "God, how long will I have to fight for everything? So far, just today I've gone through this four times!" I truly wondered—later I found out. You have to keep on trying to stay in touch with the core of your existence even though you feel that reality slipping away.

Don't let go of you, don't question yourself. Speak out, scream, demand, be a bitch, do whatever it takes to achieve what you need.

This was easier in the early months than now (I think chemo makes me 'shocky'). I had to learn to acknowledge my inability to deal with conflicts, worries, the future, money, insurance, and on and on. A friend taught me to just ask out for help. He taught me one of the most precious things I ever learned.

One night when we were talking about learning from this disease, and how I just had to "let" some things go now in order to get treatment and get better, he asked me: "When your children were babies, and they cried, they didn't know what was wrong with them, did they?" No  "You went to them, and you found out what they needed, and calmed them?" Yes, of course. "Do you think our our Creator loves you any less than you loved your babies?" Heavens, I thought, of course not!

From then on, I was able to ask and wait. The answers seldom came in the form I thought they would, but I always had an answer, and for pain, always relief, in some way, some form.

This becomes very much a journey with the real you (that which never changes). This essence is always within me, I now believe, but nothing is immediate.

Trust: You'll learn to wait—not try to solve things yourself, just whisper your need, and let it be solved without YOU. That is very important. I've even had to pay bills very, very late due to hospitalizations, etc. and when I phoned the creditor or utility, they took off a penalty (not the Times Warner Cable Company though!), and wished me well. You just have to learn now to trust that there is something higher than yourself, and your doctors, the universe, and not worry about how you impress or affect others. Just find yourself (that which has never changed!), and rely on that. You know you!

Learning to get control of this journey is a lasting lesson. I feel no more strength to fight this than an alcoholic, or someone addicted to drugs, I have no choices, I am a cancer fighter. Facing my 2nd mastectomy, I learned I have definitely not accomplished this, and I've had to seek professional help—and I'm so grateful that I did....grateful to myself for doing it and to the physician that I selected to help me through this challenge. But, even that required dragging myself out after the last month of a wretched chemo experience and visiting five professional therapists before I decided on one. Most of the time, I felt I was being too particular, and I wanted to find someone "in the network" of the insurance company—and of course, I didn't. But, when I found him, I knew it was the right choice, after we had three telephone conversations, and one office visit...the right choice for that time.

I selected a psychoanalyst, although I saw PhDs, psychologists (MSWs), etc. The thing I notice was that he wasn't 'sappy.' I mean, I wanted someone I felt would help me fight whatever I could feel coming on, or the battle that I had not physically fought, but was an inner war. Referred by my infusion nurse, he did tell me over the telephone: "This is a situation where most cancer patients end up with little or no funds left, and need help, and I want to help them. . . so get in here." He did not take insurance but he told me we'd work out his fees. When the others came out to greet me in the waiting room (if they came that far 'out,'), they usually were demure, or quiet, and seemed to just want to write. Well, they could read my web site—I had it all written down for them. I guess I wanted a competent, confident, ethical, caring fighter, because I knew that I could not fight any longer.

This can be a challenge with a family, and close friends, or people who just want to help, but it's important.  At times, I had to speak up that I was the one who needed to be asked questions about me, not other people, for example.  You'll have to limit phone calls, and visitors to hours you feel comfortable (if you start treatment, your may find that you don't have a good grasp on how you will feel from one day to the next,  much less one hour to the next, and kind visitors will understand a "tentative" time to visit, and call first. It's best if you make the call to confirm - gives you more control.

I learned control in a strange way. When my hair began to fall out, I was in a sad emotional state. I cried with every clump that dropped onto my shoulders. Friends took me to lunch, then to a wig shop to just look, and then to a salon to have my hair finished off! Shaved! But, I was the one who had to make that final decision, and I just couldn't do it. I recall one of them advising "shaving" and I yelped, "No!"  On chemo you have less resistance to infection, I didn't want an infection. But, with all those empty spots on my head—I went for the clipping. And, left with a wig on (which I despise to this day—too many bad memories). But, I didn't cry about it, again (I did think my hair was growing back in that week).
 

"Control," comes and goes, so don't judge yourself harshly.

New behavior becomes a habit, and during really tough times I'd wonder, "Where's my endurance, determinations—am I giving up?" I often had to force myself to pray, even a short, I can't handle this—You will have to for me. One night, I vividly recall the  pain. I awoke with it, so it was "ahead" of me. Struggling to deal with it, wait for medication to take over I realized there was an extenuating circumstance— and I sank into a despair. Feeling as though I was in a closed, dark room, I asked for help

"Please!  Somehow help me find a way out of this." 

I suddenly thought of all the mothers I'd been with through their labors (over 2000) and I had PREPARED them. I wrote the book!  Quickly, I employed the techniques I wrote about: 5 breathing basics to cope with discomfort. It worked. For you, however, it's important to know that we all fall apart, lose 'control,' worry, and fear, and feel shame. You'll come back on track—just knowing that has been a help to me.

 PSYCHOLOGICAL/PSYCHIATRIC SUPPORT

Does a diseased tree evidence it's disease? Do leaves fall when they lose the light and nutrition they need? No amount of putting the limbs back on will hold them for the winter winds. Psychological help was like creeping off into some dark corners and looking for it—but they are doctors, I wanted to scream—and I need some help with this.

I did not want reconstruction, after talking with radiologists about the visibility to view new growths, and the extra hours and incisions involved. And, the prostheses are heavy, even though they are a "B."  But my eldest daughter told me, "Heck, Mom, look at me—that's why I nursed the girls...don't worry about it."

The majority of cancer survivors were cautioning me, "Be careful...don't wait until it hits you and you have to take whichever psychiatrist is on call for the ER!" and so forth. Or, "My depression hit after chemo..."  I think of denial. I think, now, of how I focused just on the next step...I had to. Had I realized what was really happening to me, I'd have fallen apart. I do not believe one can be faced with the possibility of one's death and take is sanely without help.

One woman in a breastcancer swim group I'm in recently said, "I thought it was all a mistake...I still feel that way." She was diagnosed several years ago. Don't wait, begin to look for therapeutic support, early. It will take you some time to find the right person for you, at that time—again, there is no guarantee your needs won't change, or your psychiatrist/psychologist won't change, as long as s/he meets your needs at the time. Growing, emotionally, will evidence if you can still work together, progressively.

Several professionals I first met with, I knew were not the best for me. Insurance was a problem. Several psychiatrists (physicians) and psychotherapists (Ph.D.s) I spoke to did not take insurance, and I was rapidly going broke, and had already taped into one of my few, small IRAs. My insurance company told me what they would pay for someone not in their 'network'—not much.

The physician I referred to above responded to my voice mail message. He called me again, and we talked more about 'it' and the other 'it (costs).' I made an appointment to see him but I knew trust would have to develop slowly, and I felt that he was able to give me time to 'grow,' and recover. . .

Thank goodness I had one visit with this physician, because within three days, I had bad news on my first set of diagnostic mammograms, after chemo. I hit the wall.  What timing—it was the first time everyone had to help me—friends, family, and my new psychodoc. And, I HAD to accept help. I was 'falling' through the floor.Now, I had to trust someone.

After several months he told me regarding my trust, "The jury's still out." But, I was trying. I didn't even want to have someone help me control my crying. Not even a pill, or a physician. I know I wanted to do it by myself. NOT. I didn't want anyone to know how fearful I was, except for my oncologist, whom I did tell, and trusted.

Later, 1/2000:  I wonder how my psychoanalyst feels now—regarding my trust issue. We've hit the 'wall' together, at a point where I was fighting his suggestions on how to 'reach' him when I needed him, in addition to paging or phoning him.  He's right. . . I do feel more secure in his office. Nightmares haunt me at times, I began to be afraid to go to bed (after my second mastectomy), and suddenly I felt as though I was a burden to him, never once considering that he was taking care of himself, and being my therapist. . . I was just afraid of loss. . . and that meant losing him, too. It is part of 'my therapeutic journey and I do trust his guidance now . . . but I haven't told him that, yet.

Resources - reaching out

One book that helped me far and above all others was Kathy LaTour’s "The Breast Cancer Companion"  Breast cancer treatment, pathology, and techniques of surgery are changing almost daily so always check the publication date on any book or article and just forget anything written before 1995. I really had to depend on my oncologist's knowledge, and he proved worthy of my trust in him (I'm not prone to doing even that).

There will be an understanding male available for your partner, too, if needed (men need support to!). Urge your adult children to go to the resource centers.  If people won't consider the referrals you offer to them, just try real hard and realize they are in denial, too, but you don't have time to stop the race for them, right now.  I remember trying to get my five adult children to each take on one area of "research" for me because I just couldn't think! They didn't seem to notice I'd asked them.  It was important to me that they might get help from the American Cancer Society, I suppose so that I could relax about their worries, and they'd learn more about my own inner turmoil.  It didn't work.  Their denial was evident.  But, I learned it couldn't be my problem - not now!

Get on the Internet, and read the cancer related web sites, women's health sites, and the major search engines health sites (www.healingwell.com, Excite, Yahoo, Geocities, HotBot, Google.com, etc). Learn the 'language' of cancer (Glossary) and use the Resource page herein for a start. You may always e-mail me, too.  

FRIENDS

Here is where you realize that reality is that which doesn't change.  The real you is that part of you that doesn't change, either.  Real friends remain real friends.  It is important to your recovery that you can decide which people  you want around you (to talk to, visit with, etc), and who you do not, and feel comfortable in taking steps to stake out your turf. My eldest daughter once said, "People are only good for one or two times."  I had to smile, then.  She was always 'an old soul.'  However, it always made me work really hard to figure out how to meet people where they needed me the most, if at all, in their turmoil.

You will soon learn that it is up to each person to determine the depth of their involvement with you and how much they can take.  You are your greatest concern.  Be willing to receive help from those who you're very comfortable with, and do not worry about them (it's one of the great lessons we learn). I had to even learn to ask for and accept healing prayer. I could always so easily pray for and help others (ah hem!). You will need physical help, too. Some people will be ever so willing to 'advise' you, but aren't willing to do anything physical for you if you ask, and you will need physical help (around the house, etc).  You don't have "time" to focus on their advice. You'll be getting a lot of that. Learn to "filter" information, experiences, and advice for your own benefit. If you have a trusted oncologist, let her/him filter for you. Don't waste time on other's advice. Just focus on healing!

Accepting your pathology findings:

The presence and involvement of my physicians cannot be underestimated during this time. One who had left for vacation (and told me prior to the surgery) was really represented by her first assistant, who just happened to be with me right after the news hit.  I'm forever grateful to this doctor and her assistant.

The physician I'd selected as my oncologist had left town, too, believing that I was alright. He was my link to hope during this time.  He was notified by my surgeon, and he telephoned me in my hospital room late that evening. I remember him telling me he was ordering tests, and I'd feel better knowing "we are doing something" about this…and something about one person I needed now was my oncologist.  It was true. I now had something to push against, and work towards. . . getting scans, and tests done to begin to assess just where these cells had gone, if they could be found. And, a partner I could trust, and respect.

I often wondered how patients went through all of this in such a short time; however, everyone was concerned about me because the diagnosis had taken so long, and my doctors cautioned me that the longer the time the greater the stress. Every doctor cautioned me about that, even consulting physicians. Yes, the wait was intense but I needed every minute I had to recover from surgeries and illness, and the betrayal in medical care I had trusted.  I had to get  my head and my heart aligned to cope with this illness and all of its ramifications. Never will I have enough time. .

Note:  Always get a 2nd or 3rd opinion - E-mail Dr. Merino, Chief, Surgical Pathology at the National Institutes of Health in Bethesda MD and Dr. Merino will help you at no cost. This also protects your doctors, as well—but especially YOU.

Since May 28, 1998,  I've been trying to cope with this, and some jerk, two jerks, are out there living life, earning great salaries, one's moved on to another hospital corporation, and not one has even apologized for their negligence. In fact only one physician has, and that was sorrow for what I was going through, not that this doctor had any responsibility for these cancer sites being 'missed.' If this had happened "on the street," I'd be eligible for Crime Victims assistance!

Tears came, and the anger and the cries of rage—and grief. It went on and on. The reality that I would have to deal with this sometime was always there but I didn't want it to surface during chemotherapy. It set me on a plan to begin to deal with it.

In time, I processed this through and talked to other cancer victims, and did tell my oncologist about my new "phase," which he wasn't worried about. My internist set about obtaining referrals for me, when I was ready and finished with chemo.  Survivors told me to just get through this chemo, and then seek outside help. . . it will be needed. Each one told me they wish they had been referred right after chemo, instead of waiting until something happened, and they were way into post-traumatic stress syndrome. So, at least I'm prepared and can look forward to continuing this trek.

It is clearly obvious to me that life with cancer is the challenge between suffering and not suffering

and keeping your nose on the horizon, like flying a plane. Focus only on the "next step," because until that is achieved and you're well, healing, nothing else can be done anyway.

I've learned not to worry about worst case scenario, because I could walk outside in a few minutes and have something fall from the roof, or a car hit me, and that would be it.  It's a blessing really to have the opportunity to contemplate this Gift of life with competent, caring people around at the same time.

Notes after my last chemotherapy infusion:

What helped me the most was the information about my cells from pathologists, and having my oncologist interpret a good deal of it to me, too.  It helped to read about interpreting pathology reports in Dr. Susan Love's Breast Book.  It became apparent to me that the more that is known about the cells you have, and what environment they are in (how your body was responding to their growth) determined what types of new treatments were available and how your basic health was handling the cancer - remember, it is usually waging it's war within you for at least ten years before it's seen on a mammogram.

The time that I had to have bone marrow stimulation injections caught me completely unawares.  I usually feel horribly yucky as the white cell count is diving, but this worst day, I felt great (shaking, weak, but good).  I drove myself to the oncologist's with my sunroof open, in 78 degree weather, and sang all the way like my ole self.  When the nurse told me, "Honey, close that sunroof, and turn off that CD, you've got to have the injections. . . "  I was in grief.  NO Way!  (the injections are to stimulate bone marrow production, and it makes your large bones hurt!! If you need them, be sure you have them ask your oncologist, again.  Mine would not have continued with the protocol for me, because my counts rebound really well - he'd just kept me out of the hospital and office to stay away from infection, which is just what I did get 7 days later!).

Now, however, all of this sounds wonderful, but I am afraid.  I feel like I'm left dangling.  There is no chemo to protect me now. 

 "From now on we're going to have to go by symptoms"

. . . I remember being told. Oh, certainly, little did this doctor know how I felt about that. My feelings—fear, loss, and ambivalence, because I don't want to go through any more chemotherapy experiences. And, yet, I felt protected by the chemo—and of course by my oncologist being 'right there,' and the staff. Now everyone's just watching. . . and I'm left waiting.  Suddenly, I felt as though I had passed through the turn-style, and I was no longer being cared for....but I still didn't know my body was well—it wasn't.

Telling us to "be positive" is ludicrous.  If we weren't positive, fighters, we wouldn't have gone ahead with the chemo, or the radiation or the surgery! 

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