Navigating Under Stress: Breast Cancer

Thank you for visiting my web site. Recording a journey that began under severe stress in May, 1998 has been extremely difficult—I "write" this now with the help of a friend because I am losing my eyesight but not from the breast cancer! Juvenile (genetic) macular degeneration ("MD") finally hit after fighting breast cancer for over three years—although the MD was diagnosed in 1980. Oh, that isn't all that's happened, in addition are the scary times during my every six month surveillance examinations and tests. Life goes on, or in some cases, nearly stops just like every other day, regardless of one's illness. Please bear in mind, when I wrote the majority of this website, I was very ill, and right now I am just returning to edit it.

I am still in regular oncology surveillance check-ups and have had some close calls, and early metastases (spreading) of the malignancy caught early. As a dear friend who trod this journey ahead of me said one day while I was first in chemotherapy, "after five years it has never left me." She is right.

That is what I hope you will come to understand. There are many ways that life proves that we are never "home free," we are never guaranteed tomorrow, and we have no way of knowing if we will be alive in five minutes. If we are "real (remember The Velveteen Rabbit children's book?)" we learn this lesson well during a serious illness and most definitely with breast cancer. We learn that today is a gift, that is why its called the present. We learn that we have a place in this life, if not for ourselves then for others, and many of us become socially active to help others when we have time and health. But, first, we have to regress in order to grow.

At this point I would go so far as to say that anyone who has been willingly with someone who is very ill, had a life-threatening disease, or is at the end of life, will find that they are a very changed person.

"Willingly" involved means as a loved one or advocate, an individual has knowingly and bravely bared their mind and soul and shall "grow" and be changed forever. Most definitely, you will find the physicians you choose for our team are among this group. If not, you haven't found your "best docs," yet. You will. They're there, waiting for you.

I experienced events during the course of this journey that made me hope that I could live long enough to make a difference for others.

When I first heard the doctor tell me there was no doubt "this is malignant (before a biopsy)," I felt as though all the things we worry about in life had rolled into one huge monster and it was standing before me. "Where do I go?" "Who can I talk to?" "What if I start crying?" "Could this be the beginning of a cruel and terrible end?"

The first thing to remember is that "Life goes on around you." The world is still turning even though yours seems to have come to a screeching halt. You expect everyone will halt with you. It won't happen. People lose their jobs, friends and family become ill, your shoes need repairing, the water heater goes out, you have an abscessed tooth, your child breaks an arm on the playground, your doctor moves away, you end up alone and very sick and there is no one nearby to help you. Believe me, breast cancer does not stop life from going on around you.

Second, make a list now and select only that which will give you the greatest potential for health and recovery as your next step—nothing else: not the kids, not your spouse, not your job, nothing. Not even money. This may end up a $1./month payment-illness but get the best care you can find. Be certain to tell the hospital's Social Service Department that you cannot pay your bill if that is the case. Most are prepared to cover it for you. If not, its back to the $1/month, or the best you can do. Worry is interest paid before its due! Thirdly, if you have insurance, ask your company for a Case Manager. That is one person who will come to know you, and you'll be glad that you did. Most Case Managers are RNs, so they know medicine and hospitals.

If you are here, you are either a volunteer for PROJECT! OUTREACH, newly diagnosed with breast cancer, worried about it or perhaps just to learn. Most likely, you have just been told there may be something "highly suspicious" on an x-ray, biopsy, on your mammogram or you've had a biopsy and learned that the cells are malignant.

Hopefully, you are a reporter, a writer, who has decided to commit your hours to healthcare consumer education. That would best serve the world.

For any of the aforementioned reasons I want to welcome you and try to help you navigate a bit easier. So start with the first "business URL" and click on the Table of Contents button, above, and go to the best topic that meets your needs now, like below, "Before Mammogram" or Biopsy, or Starting Your Own Team and read them to get a jump start and decide if you want to go in deeper, here. Try to avoid the links in the content of the page you are reading because they can distract you. Return to them when you've finished a page unless that is exactly what you are looking for right then. This web site is for you and I, not about "hits" or popularity. I am dividing the long links up into smaller pages (most often where the bars are placed), so some of the topics may have "continued..." pages so don't worry. It will be easier on you to not have to scroll through long documents so much, so get up between pages and have a nice drink, and stretch. You'll be all right.

MAMMOGRAM - If you are preparing for a mammogram click on the URL Before Mammogram, and then read Radiologist, and down in E-Med4U read about owning your own films and the FDA requirements that are supposed to guide you and protect you (caution: the FDA is not consumer-oriented if something goes wrong. Example: If you file a complaint with them for a violation of the Minimum Quality Standards Act (MQSA) because, for example, they would not give you your original mammogram, or you did not receive your signed and written report within 30-days, they turn your complaint over to the American College of Radiologists without telling you (the very member whom you are reporting!). The ACR is an association intended to get paying members—Radiologists, first, rather like going to the KKK with a racial prejudice complaint. SO, NEVER release medical records to ANYONE or any organization without consulting an attorney first. NEVER!

Now comes the most difficult part of all of this, deciding where you need to turn, who to go to, who will listen to you, and how to learn to negotiate for your life. Many people are simply lost in the healthcare system—an oxymoron at best. There is no system.

We fall through the "cracks" because we either don't have insurance, or enough insurance, or we simply have not learned to stand up for ourselves and fight. We become lost in a quagmire of physicians who do not communicate with each other, and few have the commonsense to question reports, biopsies, and radiology or nuclear medicine scan reports. It is very much a commonsense gap. Therefore, think of yourself as your own loved one—that alone will wake you up.

We are socialized to respect others with more information than we have—that is one of the reasons that high income areas have high breast cancer incidence rates. Women do not assert their rights in the medical milieu. Any group that dictates to another group: politics, medicine, law, education thrives on "BS" or as the philosopher, Max Black conjured up, "Humbug (a nice way to say, "BS"). The U.S. proudly boasts of women's rights, yet women fear speaking up and making demands for their own lives, much less those of their loved ones who would suffer greatly if the mother, spouse, grandmother, sister were lost to breast cancer.

Just take a look at political "wives," and presidential wives, primarily. Few of them were or are assertive and intellectual, much less evidence commonsense. Its not allowed. But, this is your life you are fighting for, and don't think you are not. FIGHT! You can reach me, and I'll help you, too.

We may also be indigent, have no money, or may not speak the language of the area in which we live in the U.S. or another nation. Or, most assuredly we just don't want to be treated disrespectfully: unclothed, being called by our first names by people we don't know, being asked personal questions ("divorced, widowed, married, single" many forms have options for us to check off). How do such questions relate to our health, our rights to respectful care and a caring milieu? None.

Answer questions as you feel the most comfortable, and SPEAK OUT if you feel you are being disrespected by attendants who are not mindful of your body's covering, etc. If you are hesitant to speak out, merely say, "I want another person in here with me, now, thank you."

No one has to accept rude or callous behaviour on the part of unthinking people around them. Most often they just don't think—they only speak.

You must realize that, at least in the western world, we live in a highly fragmented care system. It is political. We must surround ourselves with advocacy to achieve the goals we want and to seek the care we deserve. We must either delegate, or do the footwork to follow through on every thread possible including who reads our mammograms, ultra sounds, scans, schedules our biopsies, reads the pathology tissue specimens, performs our surgery, provides the anesthesia, and on and on. No, this isn't about bad doctors, its about life in our culture.

Follow the Table of Contents—email me (leave off the numbers in the e-mail link before sending) if you have trouble. If you would like an advocate, or want to volunteer (she says, smiling!), let me know that, as well. Everyone must have someone to delegate tasks that need to be done because when one is under this stress its way too much to ask to keep on doing your daily work, and finding help for this killer disease at the same time.

I emphasize, if you have insurance you contact your insurance company right away—mine were always very helpful to me and even taught me some valuable options I didn't know about regarding patients rights. Contact any attorney to ask to have patient papers drawn up such as your medical power of attorney, your power of attorney, and your Directives to Physicians. Most attorneys will be pleased to help you and not charge you, if you cannot pay.

If you do not have insurance and you are 55 or older, go to http://benefitscheckup.org (email me if you need help). In most states, you can contact their Department of Health, and ask for the Breast and Cervical Cancer Program, or find that on the Internet.

Every excellent hospital has a social services department, and major counties have excellent county hospitals, so contact them, and/or your social services department. And, so not neglect to advise your doctor first and foremost. Physicians have access to no cost pharmaceuticals, and other programs for their patients. Illness is a leveling field. No one escapes it, wealthy or not.

Contact those you love the most—friends, family, and colleagues you trust. They are an incredible source of love, understanding, and they keep you on an even keel. When you think you are going nuts they'll tell you that they feel that way, too. Themselves, not you!

Begin using a notebook for everything. Carry it with you everywhere. Write in it every time you speak to someone about your case. Keep a journal, on the computer or in the notebook—pour out your heart, and cry, you will cry—and a LOT! Crying will convince you that you have to find doctors who care. And, you will.

You'd be shocked to find that its the middle of the night when you're on the Internet the most, having others there when you are there, helps! You may E-mail me by clicking on E-mail or using the Guest Book, below (remember to remove the numbers from my e-mail address before sending it).

Remember, I have been right where you are now. Again, you will cry, that is normal. You're angry, afraid, and not sure that this is a good time to reveal your most inner self to others.

Serious illness concerns and/or diagnoses never come at a good time, it seems, so you're thinking of others in your life, too—don't do that! They don't want you to do that to them. They want you healthy, and alive, and telling them exactly what you need, right down to taking out the trash.

At the same time, you must have one person you can either talk to, e-mail with, or know you can call at any time, day or night, and be fully open, and yourself. Find that person, because you care enough about yourself. Believe me, all that you are learning now, you will pass on to the world, later. You won't get through this without a great lesson. Be thankful for that. Many people have never had a chance in this life to move beyond their own mortality, to help another person.

Just know that there are many great, loving physicians who do care about you.

Do not take one test, or one piece of advice without getting a 2nd or 3rd opinion. Yes, that takes time, but YOU HAVE TIME unless a surgeon or oncologist tells you that you do not have time (you have a right to question any "hurry up and wait" suggestions, like "Is this because you are going on vacation, or playing golf? I want the truth."

In that case, tell her/him that you want two more consults from outside their practice or delegate that task to someone you've called to help you—"Get me two more breast surgeons to talk to and take my mammogram over to this practice and see what the radiologist says...here's my signed consent...please phone them to check out what kind of a Release they need," and always have your attorney a phone call away (note: most general attorneys will offer you their help if you tell them you have a cancer diagnosis—many won't charge you, either, because you should have a Will, Directives to Physicians, and a Medical Power of Attorney drawn up as soon as possible)

There, you're on your way! Remember—obtaining 2nd and 3rd opinions is what a good doctor wants for you too because they will be getting them to check on their work if they are good doctors, and they want you to decide with them the best course to take. If you've had a biopsy already, you need a 2nd opinion on that—this link takes you to: Contact Dr. Merino at National Cancer Institute. Your tax dollars at work. You'll have the best there is, too. Tell her PROJECT! OUTREACH'S founder sent you. How do I know? I contacted the chief of pathology there who told me he'd contact Dr. Merino for me, "Dr. Merino is the chief of surgical pathology and the best there is." You may find she is elsewhere in the world, but she will communicate with you via e-mail, or telephone, personally, so don't give up.

Don't waste your energy or emotions. The experience with that one doctor will take enough out of you.

Go forth and know help is here. With wondrous doctors and others, I founded a new national breast cancer organization that does what others have not done, and now its under the capable direction of its second Board Chair, serving women by providing mass breastcancer screenings through the formation of collaborative groups that care about breastcancer, early diagnosis, and prevention!

If you are a writer, or reporter, definitely get the facts first. Remember the first lesson in debate team class: "You cannot debate if you don't know both sides of a issue." At some point, someone has to listen to patients to get both sides of this issue.