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.

 

WAITING

© 1998   Carol Thompson

Permission granted to publish on this site by the author

 

How do I feel? Worn out. I gladly took the drugs, the tranquilizers, morphine, whatever they gave me, everything and anything. I don't care. This disease scares the—well, it scares the hell out of me. It just does and I have to admit it to myself.  Its just not done because if I do admit it I scare others and I tell the world I'm weak.  Everyone said, "Think positive—you'll be just fine," and go on about all the mountain climbers, and how they could "bike twenty miles a year later." Positive. . .that word again, it echoes. I should have been thinking Negative—that would have been a positive approach.

In the newspapers, on TV, the radio, and at the doctors' offices researchers keep asking, "Why don't women go for Pap smears, screening, and follow-up mammograms?"  Before we have time to think about our own reasons, they answer themselves, first: "They are afraid."  Who is they? My words haven't been heard, words, their words, or other's words. It's the anxiety surrounding how I will act if there is something there, and how others will act. How can I hold myself together long enough to keep existing, keep on day to day, job to job, child to child, shopping to shopping. I'm trying to think, concentrate—I can't fool myself—but maybe that is what I'm supposed to do. It makes others feel better. How do others handle it?  Will I be able to handle it?

Maybe I'm just distracting myself to calm the dark terror that I have found exists inside of me. It is a part of me that I never knew could exist. Our life has been hard at times, money, job worries, the children, but I could always handle myself somehow. I had faith. What is faith now? Blaming. Maybe I'm blaming others interrupting my happy little world. 

I knew that cancer could be in me—yes, it could, but I didn't think it would really happen to me. Suddenly my response is unlike anything I ever imagined or thought.

I am not by myself. There is another self emerging, hovering and watching the one I thought I knew so well. I search for soft, comforting bodily shelter, my own, another's, a pet, my lover ~ this time, maybe just for now. Fear and the need for comfort just stay there now. The need is always there, even when I thought the cancer was gone for good. 

Treatment is completed now “Its all a matter of symptoms with breastcancer,” the doctor told me. I knew that. Its in all the things we've read. All the hours searching the Internet and library.  I waited for symptoms. There is no other way to find or seek out the elusive killer that I know may return.  

Why didn't someone tell us before we heard those words, "It is malignant, but . . . " Why didn't they tell us the truth so we'd be more observant. Who wants to die because they weren't told the truth about what could happen to them? Other tumors, breast cancer can often be found elsewhere, all that. No, they just say take this radiation, get this little cut, or we'll fix you a new one. My somatic self screamed nothing can be replaced by hiding this.

In we dive, not asking questions about how the treatments can fix this, or stop it, or what the treatments may do to us eventually. Many of the others say that, too.  Then, we finish all that and we're called "survivors." What a fool I still was ~ I believed it. Then, I heard one oncologist "stormed" every time he heard that term. A brilliant doctor, in fact.  Thanking him, every day, I am thanking him for the reality he gave to me. At least I know I have to be watchful - I'm a "Warrior" just home from the battle, not yet a survivor.

My confidence is gone. There's no way to predict how I will handle the news if it comes back, again.  But fatigue, the emotional fatigue is unbearable.  Anger.  Am I the only one who feels angry? Why can't it just go away for a little while? The thoughts, now I can't even read.

Again, just like my first diagnosis, all over again. My doctor was watchful, and realistic, and I wanted a different radiology group. They found it! It was there on previous mammograms, too, just like the first time.

Oh, yes, we all have to die - life is for today ~ the present. Somehow we maintain that thread of connection with that inner self and then experience it slipping slowly through our fingers. Grasping, grasping for another's hand may help me, for a time. But reality is there. Just as the sound of a tin can rolling in the streets at 3:00 A.M. is real.

Most of us don't want to hear, "You're strong..." or "You can handle it . . .."  Ah, how very grateful they are that they do not have to bear the fear, the reality, the feelings, and the needs. 

The needs, oh yes, the needs. I ache to be taken into someone's arms to be sheltered, hidden, protected by humanity, the earth, and strength. My soul feels the weakening of the my structure folding like a card tower. Life's thread slips further through my fingers. I'm afraid to hold on too tightly. I'm afraid, in case I have to give it up.

If only some of the doctors would yell, "Let's get this thing!" and not show me the charts or how long I should live "with this."  He was so wrong the first time. Just be real with me, that is all I want. Tell my family what is going to happen to me; how I may feel with the treatments, tell them to love me.

I long to hear people to say, "DAMMIT - this isn't fair!   There's nothing we can do for you except the dishes, laundry, shopping, empty the trash and be with you." Oh, but please ~ do these things, the things that need doing. These are mundane things until they are right before my eyes, at a time too late.

I focus only on preserving the façade of the person I used to be ~ the one no longer there, the one driven out, whom I knew so well.  There's a thread of myself connected to something.  Part of myself is gone but the façade continues without being seen yet my self still screams for that human sheltering and no one is listening.

Is the thread gone, yet? Can it be grasped, prevented from disappearing completely? Would that be 'lady-like’ to stop that thread? Or is that like keeping my knees together when sitting down ~ learned so young, and rejected, but now - maybe, maybe that will work, and maybe it was right after all. Maybe a lot of things could have been different. My self wants to let go of the thread, but somehow it is connected to me, and to everyone and everything in my heart. Am I brave enough to let it go and forget the feelings of others?  They don't know this pain; they don't ask. The thread holds my essence, but it is weakening.

The cancer couldn't be felt but it was there on the negatives of this structure that contains me.  Films, negatives, is that an overlooked impression?   “Impression” that’s what they told me.  Words.  They mean so much, yet nothing.  They said I couldn't have ever felt "those," but could more careful monthly examinations have caught this in time? Did I miss it? Did I ignore it? Maybe I didn't believe it - just as I didn't believe in the comfort of an old stuffed animal. I do now.

My façade seems not to care but I know I must go on to find a new meaning within. Perhaps its slipping, the absent self; fear is showing. Looking at my scarred chest, I realize that part of me was mutilated—even if cut by a master's knife, or keenly sculpted replacements. It is too much for others to feel, to be nearby, and to realize cancer may be waiting for them.

Oh, the next one, it could be me, again, and there is no way to feel prepared, no way to escape it, no way. I must just trust those I have asked to be there.  But the little things, they matter. Waiting, it's still the friend who doesn't visit, the person who doesn't call, the hospital credit monsters, an unfeeling doctor. Little things matter so desperately. The one who doesn't show up and does not call - why?  Those who take my time and presence for granted, and don’t show up, or the doctor who doesn’t call back. How can anyone not call someone to see how the waiting is affecting their patient? Is human dignity really so insignificant?  

Maybe those I love know the truth, too: life is just for now.  But so many seem to have forgotten about my life, my feelings, my self, that self that is no longer there ~ does the doctor know and not care, either? How can I go on caring?  Is life caring? Am I feeling this vacuum from others when it’s really inside of me: no feelings?

Another test. More technology. Will it repeat the agony again? "It's questionable - but with this new technology we can be quite certain as to. . . ."   As to what? It is cancer. Will it change because of the new tests? Does the new machine chase it out of the body, my body, my tissues, my heart, and my soul? The mistakes they make, always someone has made a mistake, and now that, too, becomes part of my waiting, wasting, watching, checking, and re-checking. Oh God, how can there be so many tests?  How can there be new techniques that work, when others, like me, have only lived a year since they tried them. I am supposed to have hope and to believe, but who can be believed?

The thread, I see it, praying it will knot. I have to hang on. Reality!  It will slip on through, eventually. Waiting, waiting, waiting, hearing "'questionable'" results over again, when will it stop—ever? "We have the results now. . ."  The news comes! It is not malignant this time. It hasn't spread. Nevertheless, oh God, it has spread, it has taken part of me away, never to return. It has made me another person; another layer of uncertainty is open now. This layer is raw. Its true, the word "survivor" is not fair to any of us. I am an unprepared warrior.

When life began there was nothing ~ it's at that level, again - a few atoms, and a lot of radiation in which I exist alone. Now my anxiety floats off as a bubble into the farthest ends of the universe. As I watch it ascend something else is there and it will have to be. There is no escape, no escape with a narrow margin, and no escape from a close call. I watch, until it disappears, but the thread is still there. My mind seeks to find space to accept this good news, and to think of healing what the waiting took out of me, and all that no one else really knew about.

Ah, but I know so well it may burst up there because it knows something no one else knows ~ only other women ~ and if I can be just prepared enough ~ in case; it will be easier to handle. Yes, it knows something, and it is leaving me with the answers to seek, or to abandon me to return to my façade, that shell of me that once was I and filled my spirit. The self I knew so well--   the person who could respond with spontaneity, fullness, assurances, never letting such thoughts wedge themselves into my pores. 

The next time. . . the news, "It is malignant . .  . " and the tunnel closes in around my torso, tightly, until only I can hear my screams - so loudly my eardrums flutter from the intensity. My scream is within, from another time, yet I hear it in that tunnel as I slip down, grasping for someone or something to stop my descent.  Friends and family cannot take this either, or they will descend with me. They are tired, and afraid, too. Their faces tell me, and that is more pain.

How will this recurrence be taken this time? If there were a God, would it hurt to let me know now? Please, life, please don’t let me use any energy on hoping against hope. The agonizing reality, the questions, the options, the . . . “life expectancy;” “. . . this new drug . . ." The tears were choking me, and I longed to cry out, “Doctor, please just hold me for now! I need to trust you.”  

Where is that bubble? The bubble I watched until it disappeared into the crevices of the universe. Why did it leave? Why did it take that part of me that was prepared, just in case? Why did it take that part of me that could hold me now, help me now? Oh, why did it ascend?  Not now.  It's not time.  

I have more questions but I'm worn out from the repetition of tests, of waiting, and of pretending. Can someone help me with these questions?  Ask for me?  Go with me? This is a killer disease ~ and no one pays enough attention, and no one really truly cares or I would have known what to ask about, and what to look for. I am no longer being strong. I've given that up, at least until I can find stronger days and resume waiting. First, right now, I have to find a space to begin asking, and learning about who I am – about me, for me, so I can cry, maybe alone and give up when I can no longer see that thread.

 end

Gratitude to Lara Timmons for the graphic design.  It was originally on her breast cancer ballad:  "Sister," soon to be streamed on this site but available on CD.  Lara is available to perform this ballad in English and Spanish.

Reviewed 06/16/06                     Webmaster