My Great Breast Cancer Adventure

Divine Interventions

I just sent out a "don't forget to register for a Writing Salon class" email announcment to my mailing list. Whew. What a relief. Each one of those announcements takes me several hours to create. It's been a long work day.

Now I can relax and celebrate the fact that my health insurance has been reinstated, at least according to a woman named Debbie Hall who called me on Monday morning to say, "We've finished the review and underwriting has approved your application (as if it was never approved to begin with). It's over."

"Finally," I said.

"Yes," she added, "it's about time."

Debbie wasn't the bad guy, you see. For the last month, she has merely been the go-between, trying to help me navigate the treacherous waters of HealthNet's agonizingly inefficient, bullshit system. But let's not dwell on that right now. Let's focus on the positive.

In case you're new to this blog, here's the back story:  I was LITERALLY on the verge of starting chemo when HealthNet decided to do their "review" - which meant suspending all coverage until that review was complete. So I felt I had to cancel the chemo, because chemo is VERY VERY expensive. As in: many many thousands of dollars. (Did you know that oncologists make 75 percent of their income from dispensing chemo? Interesting, eh? Makes it kinda hard for them to say, "You know, in your case the benefits of chemo are questionable. Your survival rate will be just about the same with or without it, especially if you consider the damage that andriamycin could do to your heart." No, you don't hear those words too often. And I question that.)

Anyway, I decided to interpret this forced postponement of chemo as a GOOD thing - a blessing in disguise, which it has indeed been. I don't regret it. In fact, I'm grateful to have been given the extra time to reassess my options. As my professional organizer, Jee Kim, said, "I like your theory that it was divine intervention."

Speaking of Jee, professional organizing, and divine intervention, I'd like to digress for a minute to say that if it hadn't been for this breast cancer brouhaha - and my ensuing fear that I'd be too sick to run the Writing Salon unless I got some outside help - I probably never would have gotten around to calling Jee and asking for her assistance. Well, lemme tell you, what a gift her she has been! Having Jee come over here and help me (force me) to whip the Writing Salon office into shape has been WORTH EVERY PENNY.

Every time she comes here, we sit together at my round oak table, and go through piles and boxes full of disorganized papers, sorting and labeling and re-vamping my whole filing system. We're doing it for my personal household filing system, too. It's a process and is going to take a while and isn't cheap, but it's going to save me time, stress, and money in the long run.

I can already see how much better life is going to be once we're done. So....if you've ever thought of hiring a professional organizer (or even if you haven't), I recommend it. If you call Jee, please say I referred you, because then she'll give me a referral discount the next time she comes over!

I have more to say about the divine interventions that have been raining down around me since my BCA (Breast Cancer Adventure) began. But it'll have to wait. I have yet to go on my walk for today, nor have I eaten any cruciferous (cancer-fighting) vegetables. Oy. Lifestyle changes.  Jack will be knocking on my door in exactly five minutes. We're going to walk to the video store to get the first season of Curb Your Enthusiasm. Then I'm going to cook and eat a ridiculous amount of cabbage.

Tree

Lenore looked at the tree that had never left the yard, and watched the clouds above it slow dance in the winter breeze. The white ginger afternoon reached out to her with its creamy touch. But wait. There was a problem, a deficiency of chi. Day after day. Change the sheets. Vacuum and dust. And now someone had toppled the milk, was demanding that she break open the furry soybean pods!

According to the churning sea foam, more research was necessary. Maverick cells had escaped, were on the loose. But apples wanted to teach her lessons, and cooking a fish fillet didn't have to be so complicated, did it? Many stories, on the other hand, fell into a gray zone. You had to stop and ask yourself, Was it all a fever dream? Did it ever really happen?

Pale, barkless limbs lifted themselves in the November rain. A few distant leaves were praying for her, healing her, smiling at her astonishment.

Even More Support!

P.S. to today's earlier post - On Saturday I received a card in the mail. Inside the card was a note from Julie Oxendale, a screenwriter and playwright who has taught many many classes at the Writing Salon over the years (although not recently, because she has been traveling a lot, and dividing her time between SF, Hawaii, and other exotic locales). In her note, Julie said she had bumped into a Writing Salon student at a big Thanksgiving Day feast, and that that student had told her to check out my blog. So she did, and she zeroed in on one post in particular (which included the "my bras are pathetic" line, near the very bottom), and that is why I now have a gift certificate (enclosed inside the card) from a lingerie boutique downtown.

This was Julie's wonderful way of giving me some much needed extra "support!"

Thank you, dear Julie. :-)

Lenore's Bedtime Thoughts

It's bedtime. Amidst the clanking and thumping of someone pawing through the recycled bottles and garbage can lids, I move toward the last cup of herbal tea, a tiny knuckle memory, imminent dreams, and can almost hear the leaves on the trees outside the farm house outside the city outside the now. I can almost see the dogs I'd have, and the vegetable garden. I can almost envision the writing… rich, flowing, productive. Spheres of meaning float like little clouds — irregular, asymmetrical, just as clouds should be.

But let's not think anymore about what's floating around in the sky of me. Let's imagine instead a wild violin, trumpet and tuba trio, and then let's go for a walk at a reasonable pace throught the quiet that comes after. Let's not try to get a handle on anything pressing that might be traveling, microscopic, through my veins. Let's just go to sleep now, and dream.

What Shocks Me

This 12-minute write stemmed from a Round Robin prompt. It'll have to do for today's post:

What shocks me — when I look into the mirror at my 53-year-old face, my new very very short hair, my sadder and wiser eyes — is how calm I feel, and how unreal reality feels. George called to see how I've been doing.  I wasn't here. He left a message. People do care. My son's father does care, even after all these years of tempestuous clashing.

What doesn't shock me, although it should, is that I wasn't here to receive his call because I was out walking. I was out walking because I was trying to be healthier. I can't not walk if I don't do chemo. I can't not eat right if I don't do radiation. What shocks me is that I am now steaming brussel sprouts in the middle of the afternoon.

What shocks and pleases me is that I have lost ten pounds, and I don't think it's because the cancer has suddenly become ferocious. It's because I haven't been drinking alcohol or eating pastries or desserts or lots of other fatty sugar-filled foods. I've been being good. Eating my fruits and fibers and vegetables. I've been being diligent. Careful. Changing myself. But can I do it fast enough? What is fast enough? Changing oneself cell by cell by cell is not a fast process. I am the tortoise, my cancer is the hare.

This morning I asked myself how I'd want to live my life if I had only five years left. Five good ones. Paris wasn't on the top of my list. No big travel plans. Sorry folks.  What I thought was: Get a dog! Walk the dog. Plant a garden. Grow vegetables. Leave some wonderful FINISHED writing behind. Throw dance parties. Go out dancing with Jack. Make him stick to his promise of dance lessons. Visit Will more. Spend more time with friends.

That's about all that came to me. I could think of more, I'm sure. I wasn't trying real hard. Nobody was grading me on my answer. I had nothing to prove. I would be happy to add: Figure out how to give back more to others, to the world. Learn how to be more interested in giving  than receiving. And buy at least two new bras, good ones. I'd hate to not have any good new bras in the next five years. Mine are pathetic.

What doesn't shock me is that I am capable of radically changing myself.

What shocks me is what it took to make me do it.

I Feel Safe Here

I feel safe here, safe and warm inside the examining room at Chinese Medicine Works. Soft flute music plays as I sit waiting for Efrem Korngold, who I hope will become my practitioner — someone I can trust and count on. The warmth encourages me. All the other "conventional" examining rooms I've been to over the last three months have been too cold. They tell you take off your clothes in a cold room. No one seems to care that you are cold, and so it goes. Cold and silent. No gentle music, either. And no flowered tapestry on the wall. Up until now, I have laid on examining tables where I stared up at the acoustical tiles. White with black holes. Symmetrical, sterile. Here I look up at flowers and vines, colorful, curling, meandering. A garden. Tendrils and vines. Pistils and blossoms. In every other examining room, a feeling of wrongness choked the air, a feeling that said: You are here to battle the threat of dying. No pain no gain. At Chinese Medicine Works, the feeling says: You are here to enhance the art of living. It's not about fighting fire with fire, it's about transformation.

When I get home, I know who the oncologist is that I want to see. This has became clear to me. I've noticed that after every acupuncture appointment, I feel more clarity. I call to try and get an appointment with William Buchholz in Mountain View. They've just had a cancellation and can see me in two days. Who knows what the wait time would have been otherwise? Easily several weeks.

I heat the water in the tea kettle, pour it into my cup, and add the four droppers full of Chinese herb tincture. It has a sweetish flavor with a slightly medicinal aftertaste. I'll be drinking this three times a day as I embark on this alternative part of my as-yet-not-determined treatment program.

Efrem Korngold is a small man but he emanates a wirey strength and reassuring solidity. His head is shaved. His eyebrows are thick, stern, bordering on fierce. His eyes are intense but kind. They bore right into you. I would guess him to be in his late 50s to early 60s. His wife Harriet is the one who wrote the brilliant two-piece article about the history of breast cancer treatments in the U.S.

This time I have a needle inserted where the energy of my third eye is said to reside, in that mysterious spot between my eyebrows.  Before this needle, or any of the other needles go in, I tell Efrem about my frustrating search for the right doctors, the right treatment program. As I speak, I feel myself verging on tears, not because I'm feeling sorry for myself but because I know that what I have to say is no longer falling on deaf ears.

My third eye is tingling a little as I write this. Efrem says I've been suffering for a long time from "dryness." On many levels. We'll be working to make me moister. :-) I take another sip of tinctured water, and then call Jack to tell him the time of my appointment with Buchholz.  It's warm here at home today. Sun flooding in every window, the back door open, fresh November air, cat curled at my feet, the spirit of a Chagall painting dancing on my breasts.

Re-Creating My World

I stayed up until after 1 a.m. last night reading about the pros and cons of Tamoxifen and Arimidex, two breast cancer hormone treatments, one of which I have been advised to choose - and then to take for five years. If you had asked me yesterday morning if I were going to take this advice to do a hormone treatment, I would have said, "Yes. Most likely. It sounds like I'd be a fool not to." If you ask me today, my answer is, "I don't know. The more I find out about these treatments, the less inclined I am to do ANY of them. They scare the shit out of me, and for good reason; only a fool would NOT be scared, and would not have second thoughts. Women on Arimidex are tormented by constant bone and joint pain (note that their comments become progressively "worse" as you scroll down). Sometimes they can barely get out of bed in the morning, can barely walk; 47-year-old women become crippled with osteoporosis and say they feel 67, not 47. Women on Tamoxifen suffer everything from severe hot flashes to gallstones to increased risks of uterine cancer and thromboembolisms. Tamoxifen, by the way (just to add insult to injury) is carcinogenic."

I have been so immersed in this ongoing decision-making process, I forgot that I am still supposed to be teaching my Round Robin class. Every week, it's my job to send all my students a "Tuesday morning missive" that contains important information for them for the upcoming week. I also send out a compilation of their writings from the past week. I usually work on all of this on Monday, and again early on Tuesday morning. It takes me several hours. Yesterday I forgot all about it. Entirely. This morning I forgot all about it, too. Entirely. Until twenty minutes ago. Why? Because I was thinking about cancer treatments, reading about cancer treatments, and trying to compile all my questions and medical records for my next doctor appointment/consultation in Mountain View tomorrow. I was also thinking about my health insurance problems, which have not yet been resolved.

So: I just sent an email message to my Round Robin class saying I'd be late with the missive.

Being newly diagnosed with cancer is like being the inexperienced mother of a newborn baby. The baby is crying. A lot. It's nursing. A lot. It's peeing and pooping. A lot. Everything has been changed forever. The world you once knew has fallen by the wayside. In the midst of your bedazzled but sleep deprived state, you must re-create your world. You must learn to be a mother, and although other people can give you instructions, tips and advice, no one else can tell you how to become your own unique, one-of-a-kind version (of Mother). This is between you and your child. Second by second, minute by minute, day by day you learn how to be the best mother you can, through a trial and error process that no one else can ever truly prepare you for.

Building Immunity

Soon I am going out for a healthful, immune-building walk.  Maybe I'll wend my way over to Putnam Street to see the open house of a nearby Bernal Heights 850 sq. foot cottage (asking price: $689,000). Two bedrooms, two baths, nice big living room with fireplace, nice big kitchen, laundry room, two decks. But no garage, located on an ugly block, and significant freeway noise. After that, maybe a trip to Rainbow Grocery in search of cheaper whey powder, megavitamins, fish oil pills, and various isoflavenes. Yesterday I walked over to the Great Plotnik's house, where I was given peppermint tea, almonds, walnuts and cheese while I conversed with the GP and his lovely Mrs. DuckNik, who knows how to find out everything anybody ever wanted to know about plumbing problems, via the Internet.

But before I leave. . . My NYC friend Ms. K  said she wanted to know what I looked like with my "pre-chemo" haircut (which I got  before I realized that I wasn't sure  whether medieval chemo was a treatment I really wanted to pursue).  So here you go, Ms. K. This is me on a Sunday morning, no makeup, and no attempts to "fix it up" with styling gels or magic creams.  (Note, however, how I have cleverly disguised my chin wattle.)

Yummy Cruciferous

Black Bean Soup

1/2 onion, chopped
2 cloves garlic, chopped
2 stalks celery, (you guessed it: chopped)
2 leaves kale or bok choy, finely chopped
2 fresh shitake mushrooms, cut into small pieces
1/2 tsp. ground cumin, or to taste
2 cans (15 ounces each) low-sodium (or not) chicken stock
2 cans (15 ounces each) low-sodium (or not) black beans
3 cups water
Plain low-fat yogurt
Chopped parsley

1. Cook the onion, garlic, celery, kale, mushrooms, and cumin in 2 tablespoons of the chicken stock in a large nonstick skillet for about 10 minutes, or until soft.

2. Add the remaining stock, beans, and water. Simmer for 20 minutes (or until it's at the consistency you like)

3. Pour the soup into bowls and top each with a dollop of yougure and some parsley (or not)

4. Have a bite, and say out loud: "Yum, this tasty soup is packed with 'super foods'— cruciferous cabbage family vegetables, beans, and shitake mushrooms. A bonus is that preparation takes only about half an hour (or more, if you are a slow chopper with a dull knife, but still)."

Soups, Hats, Love, Anger & Hidden Powers

I'm going through a process of discovery - about illness and about our medical system. This process includes anger at times, in addition to gratitude, fascination, courage, fear, befuddlement, and frustration. Anger can be irrational and unrealistic. For example, let's take a look at what I wrote in this blog yesterday about good old "Lenore" (Black Bean Soup). After I wrote it, I worried that it might offend my dear friends, make them feel attacked and therefore defensive. But I went ahead and put it out there, because it was the truth. Like it or not, proud of it or not, I had to admit that I'd felt this anger.

I tried to examine my anger, figure out where it was coming from, and work through it. What I concluded was that I know that when my friends made offers (prior to my scheduled-but-now-cancelled chemo) to bring me soup or hats, or to drive me to doctors' appointments, they were offering far more than soup or hats or drives to doctors' appointments. They were offering themselves. They were offering their love. When they offered that to me, I felt a tremendous surge of support, I felt uplifted, strengthened, more motivated, encouraged to move forward with less fear. It was, to tell you the truth, transcendent.

Even so, there have STILL been moments, since the day I cancelled the chemo — moments when I've felt lonely, tired, scared, overwhelmed and abandoned. Since the day my chemo was no longer imminent, and I therefore didn't need "caregivers" right away, everyone pretty much disappeared. I stopped getting all those heartening emails and calls asking if I needed help. Logically, I understood this. Emotionally, I didn't. It felt like abandonment.

I was (and am) still faced with a daily life that now includes a tremendous extra load of work and stress, as I continue to wend my way through the medical system, searching for information that could make all the difference re how much longer I have to live on this earth - and with what quality. Dramatic sounding, I know. But true. It really is a life and death situation.

From my friends' perspectives, I suppose, they'll still be here for me if and when I need them to help out (say, if I get obviously sick from chemo or radiation or whatever). From MY perspective, although I've put one thing on hold (chemo), I am still wildly struggling to keep it all together.  Every day, every hour, I ask myself these questions: What does it mean that I cancelled the chemo? What have I done? Why? And where will it lead?  At the same time, I try to remain calm, focused, logical, smart, and brave enough to listen to, and honor, my gut instincts —  despite the fact that they go against the norm.

Bottom line realization: I have to accept that I'm alone when it comes to dealing with the day-to-day, nitty gritty realities of this experience. My friends can't do the research or the thinking for me, and I shouldn't expect them to.

Like I said, this is a process. My process. I'm learning as I go, not only about disease and the medical system, but about other, even more important things, like friendship. And like the will to live. Here's an excerpt from a chapter in a book (Breast Cancer: Beyond Convention) that I'm finding helpful right now. The chapter, titled "The Will to Live and Other Mysteries," is by Rachel Naomi Remen, who also wrote the book Kitchen Table Wisdom, which I've never read but would like to:

"...we cannot forget the power of the will to live in us, the Mystery at the heart of our lives and all other lives.

Perhaps we often do not recognize the power of the will to live because of the way we have learned to deal with our wounds. In a culture that sees woundedness as a weakness, many of us feel ashamed to be wounded and even hide our wounds. It is only natural that we try to put our wounds behind us and get on with the rest of our lives, but we do this only at a price. The power of the will to live is buried in the depths of any wound that we have survived, and we may need to revisit our wounds in order to know our strength. The secret to this may lie in how we look at our wounds. We need to look, not as victims but with a certain curiosity, as a witness to the hidden power in us to move past obstacles.

Most commonly, the will to live shows itself in subtle ways, taking forms that we do not expect or recognize. At the beginning of a disease, the will to live often looks like anger....

....Sometimes love reconnects us to the will to live, and those who love us can evoke and restore our wholeness far more powerfully than even the most skillful of surgeons....

....The will to live responds to the people around us—the very people who may feel they are powerless to help us because they have no knowledge of our disease or no expertise. But evoking the will to live is not a matter of expertise. We all have the power to affect those around us. We can strengthen the will to live even in total strangers with a word or a smile, often without even realizing it. We evoke the will to live in others not by what we know but simply by being who we are.

Black Bean Soup

The black bean soup is ready, and Lenore is on edge. Black beans, onions, garlic, celery, shitake, cumin, chicken stock and kale, all simmering on this November eve, but Lenore is festering from room to room, out of whack, oozing dis-ease. What needs to be repaired?

She doesn't want to complain, but that is her bent tonight. What she wasn't told or can't find out is eating at her. There were things the doctors should have said, things that could have affected what she did that cannot, now, be undone. She knows that the doctors never intended to be her enemy. She knows that they all meant well, and were trying, are still trying, to do her good. She also knows that people in power — especially groups of people who are mostly men, especially well-meaning groups of men who are in power over women — can be monstrously stupid and stupidly montrous.

She looks again at a portion of the article she is reading about the history of breast cancer:

As late as 1907, in a follow-up paper titled "The Results of Radical Operations for the Cure of Cancer of the Breast," Halsted¹⁷ echoed Virchow's flawed theory, writing:

I recall ... cases ... in which general metastasis was believed, erroneously, I think, to have occurred by way of the bloodvessels [sic].... We believe, with Handley, that cancer of the breast, in spreading centrifugally ... before involving the viscera may become widely diffused along surface planes.... It permeates to the bone rather than metastasizes to it, and, by way of the Iymphatics, along facial planes ... the liver may be invaded by way of the deep fascia ... the brain by the Iymphatics accompanying the middle meningeal artery.... Though the area of disease extends from cranium to knee, breast cancer in the broad sense is a local affection ... invariably by process of Iymphatic permeation, and not embolic by way of the blood. If extension, the most rapid, takes place beneath the skin along the fascial planes, we must remove not only a very large amount of skin and a much larger area of subcutaneous fat and fascia, but also strip the sheaths from the upper part of the rectus, the serratus magnus, the subscapularis, and, at times, from parts of the latissimus dorsi and the teres major. Both pectoral muscles are, of course, removed. A part of the chest wall should, I believe, be excised in certain cases, the surgeon bearing in mind always that he is dealing with Lymphatic, and not blood, metastases.... It must be our endeavor to trace more definitely the routes traveled in the metastases to bone, particularly to the humerus, for it is even possible in case of involvement of this bone that amputation of the shoulderjoint, plus a proper removal of the soft parts, might eradicate this disease.... So, too ... amputation at the hipjoint may seem indicated.

Halsted proposed the notion that more is better, suggesting the removal of the sheath covering all muscles surrounding the breast, the upper part of the abdominal muscle that extends from the rib cage to the pubis, those that control the motion of the shoulder blade and rotate the arm, and, in some cases, removal of the arm and hip as well. Halsted's hypothesis is captured above: to contain the disease it may be necessary to excise all contiguous areas. Of particular note is that this flawed logic persists today. Cancer continues to be treated more like dry rot in the rafters of a house than microbes in a river.

 

Once she has caught her breath, Lenore moves on to another portion of the article: 

. … it was hypothesized that positive axillary nodes served as a predictor for the spread of the disease. When evidence indicated otherwise, only a few doctors altered their clinical behavior. Similarly, bone scans, chest x-rays, and blood work have been shown to be of little use, yet more than half a billion dollars are spent each year when a physical exam, history, and mammogram are sufficient. Even though radiation following surgery reduces local recurrence, it is clearly established that the reduction of local recurrence does not impact survival. Radiation following surgery is akin to the ancient Greek custom of killing the messenger who has delivered bad news. Still, only a few physicians perform lumpectomies without recommending radiation therapy. Finally, though mastectomy is popularly perceived to be the safest treatment, there is comparable survival benefit between mastectomy, lumpectomy with radiation, and lumpectomy alone--women live the same length of time regardless of which intervention they or their doctor choose. Neither mastectomy nor radiation eradicates the possibility of recurrence--they merely reduce it, and local recurrence itself does not suggest that a woman's chance for a long life is less. Thousands of women and their doctors nevertheless elect mastectomy.

Lenore stirs the black bean soup, dips her spoon in, takes a taste. It's good. She's glad. Jack will be coming over soon to share some. There's a full moon tonight. He'll remark on it. She plans to avoid talking to him about what her day was like, because she can tell that he's tired of hearing about her obsession with trying to determine what treatments she should or should not choose. He knows she is spending a lot of time researching and thinking, thinking and researching, and then thinking thinking thinking some more. For Lenore, researching and thinking is the same as fighting. Fighting for her life.

No one really understands this, not even Lenore's closest friends. If Lenore were on a sinking boat and her friends could jump into the water, swim out, and save her, they would try. If Lenore were too weak to walk and needed people to lean on, her friends would give her their arms for support. If she couldn't lift her spoon to her mouth, someone would appear to lift it for her. But no one is offering to help Lenore hack her way through the jungle of information. No one is offering to help her piece together clues, interpret statistics, make phone calls, print out articles, compile her lists of questions, or find the answers to those questions. In this quest, she is alone. Totally on her own. Racing against the clock with no idea when, or even if, the alarm will go off.

At first Lenore is angry at her friends. But then she begins to let the anger go, because she is coming to realize that it's hard for them, or for anyone, to comprehend that which is invisible. If she had not called a halt to her chemotherapy, her fight would be obvious. Everyone would be able to observe her on the battlefield, wearing her side effects as badges of honor.

But for now she is fighting an invisible fight, and has no badges of honor to prove that she is standing on the front line, wielding her sword.

Her friends say, with worry in their faces, "How are you feeling, Lenore?" and Lenore replies that she is feeling fine, thanks. And physically, she is. She sounds fine, too. They all look relieved, and tell her that they like her new short haircut, it's very chic. One by one they walk away, calling out over their shoulders, "Just let me know if you need anything, Lenore. I'll bring you soup."

Things Hidden

Hidden was the operative word in Lenore's world these days. The cancer was hidden. The path that would lead to the destruction of the cancer was hidden. Where oh where could the cancer cell be, oh where oh where could it be?  This was the question in her little song, to which, of course, there was no answer. No one knew. Not her surgeon. Not her pathologist. Not her oncologist or her acupuncturist or her radiologist.

Things hidden were rapping at the doors. This had become the theme of her life since the diagnosis. Doctor, doctor, where was the doctor? Who was the doctor for her? How could she find The Right One? He was rapping at one of those noisy doors, she was sure.

So many hidden things. Antioxidants hiding in the blueberries. Maitake mushrooms hiding in the vitamin bottle. Bunches of scarred up tissues hiding inside her armpit, making it difficult to regain her full range of motion. It hurt when she reached for the milk in the refrigerator, hurt when she brushed her hair, hurt when she stretched her arm to turn out the bedside light. 

Somewhere there was probably a set of instructions she could follow, some sort of therapy that would break down the disabling scars. But she would have to go looking for them, she would have to make an appointment in order to ask her doctor for them. The appointment would cost her.

But Lenore could live with the expense. Things hidden came at a price. They came in a wide range of colors and sizes. Lenore waited for the hidden whistle to come blasting out of the tea kettle, letting off all that steam.

Getting Straight re: Recurrence vs. Death

Here is an excerpt from Part Two of  Harriet Beinfield's article (the bolding is mine):

Radiation

Radiation is a known carcinogen that can produce irritable, red, inflamed tissue in the short term; and stiff, thickened, desensitized tissue over time. Radiation following lumpectomy has no proven impact on survival, though it does affect local recurrence. Women who recur have an increased mortality, not because of the local tumor, but because recurrence is the manifestation of biologically more aggressive disease. Recurrence, however, is only symptomatic of increased risk of metastases, not the cause of the disease's spread. Removing the possibility of recurrence no more enhances a woman's health than removing the speedometer of a car alters its speed.

In rural areas like the outlying plains of North Dakota, where women must travel 6 or 8 hours to receive radiation therapy, mastectomy has been recommended over lumpectomy to prevent local recurrence. But women who do not receive radiation following lumpectomy have the same chance of survival as those who do.^{26, 40,41} The only difference is in the likelihood of local recurrence: 40% of women who do not receive radiation therapy will have a local recurrence within 10 years, whereas 15% who have had radiation following their lumpectomy will have a local recurrence within 10 years. It seems difficult for us to comprehend that how long a woman lives is not dependent on whether the local disease returns. It is not local disease that is life threatening, but the rapidity with which metastatic disease proceeds--something that there is no way to predict as of yet.

Women who recur within 2 years have a 20% chance of living 10 years, whereas women who recur after 5 years have the same chance of survival as those who do not. Recurrence within 2 years may serve as a more valuable marker of disease progression than any other. It was shocking when Fisher's study demonstrated that local recurrence did not impact survival. Yet doctors seldom make this clear to patients.^38(p74) Because the value of radiation is questionable, its role following lumpectomy is currently under scrutiny.

NOTE from me:

My first question after reading this was: "So what do you do if you DO have a recurrence in the breast?"

Answer: You can have another lumpectomy, which really doesn't have an side effects - just the healing of the incision.

Investigating Radiation

When I asked about the side effects of radiation (I asked my breast surgeon, and I asked the radiation oncologist), they both assured me, quickly and matter-of-factly, that the side effects were quite minimal, and that most women these days pretty much breeze through radiation, suffering only from temporary fatigue and minor skin irritation.

I'm glad I decided to investigate further, on my own. Here's some of what I've found out:

Early or acute side effects:

These may begin about the third week of treatment and can gradually go away about two weeks after radiotherapy is over.

* Reddened skin on the breast
* Fatigue; Suppression of bone marrow, causing:
-    anemia (low hemoglobin);
-    low platelet count (too few platelets to control bleeding);
-    low granulocytes (not enough granulocytes to fight off infection);
* The outer layer of skin on the breast may peel off (desquamation)
* Moist desquamation can happen in the fold under the breast and under the arm
* The breast may become very firm or hard
* Dilated capillaries, which may look like sores, sometimes occur over the breast (telangiectasia).

Subacute side effects:

These can start from about six weeks to three months after treatment and are usually temporary.

* Acute radiation pneumonitis (lung inflammation, sometimes with infection). It can be treated but may leave scar tissue in the lung.

Late side effects:

These are seen about six months to years after treatment and are usually permanent. They are caused by slow degeneration of the blood supply to organs and/or glands, which can lead to damage or death of the organs or glands involved. These are of concern because in some people they can be quite disabling and cause long-term pain. They include:

*Chronic inflammation and fibrosis (scarring). Apart from breast cancer treatment, this can occur almost anywhere in the body.
* Brachial plexus injury, or damage to the complex bundle of nerves under arm. Problems range from a sensation of "pins and needles" to total paralysis of the arm and hand, sometimes with severe pain. It is seen from 10 months to 4 years after radiotherapy.
* Lymphedema (accumulation of lymph fluid) in the arm on the side of treatment and swelling of the breast, or over the ribs or lower torso, which can be very uncomfortable. Lymph fluid can't circulate normally due to scar tissue from removal of lymph nodes and irradiation.

-    Cellulitis is a complication of lymphedema. Infection develops in the lymph fluid and surrounding tissues, such as the arm, chest wall, breast and shoulder. Lymph fluid is trapped by scar tissue and acts like an incubator where infection is hard to treat. This painful condition can become chronic, requiring long- term antibiotic treatment, for months or years.

-   A rare complication of lymphedema is lymphangio-sarcoma (secondary cancer) in the swollen arm.
-   A list of ten preventive measures for cellulitis is listed in The American Journal of Medicine
-  Endarteritis obliterans: blocking of small and medium arteries, with subsequent scarring or damage to organs or glands which they supplied. These organs or glands may stop working years after radiotherapy.

* Matchline fibrosis (inflammation and scarring) where radiation fields have overlapped, such as in the pectoral muscle, limiting shoulder movement, or rib fractures which can happen without symptoms.
* Pericarditis (inflammation of the membrane around the heart)
* There is concern of risk of secondary malignancies (e.g., breast cancer, leukemia and sarcoma and others such as lung and esophageal cancer).

A Fascinating Journey

I've been using the word "path" a lot lately (i.e. "my treatment path"), which I'm sure is a cousin of the word "journey," and they both probably belong to the tribe of "New Agey Spirituality Jargon." This makes me nervous, because whenever I hear some airy fairy cosmic pseudo guru referring to someone else's illness or disease as a "journey," I kinda wanna barf.

However. . .

. . . I do find myself perceiving this breast cancer experience as a journey. I can even see it, when I have my wits about me, as a fascinating journey because it's fraught with so many twists, turns, detours, mysteries, obstacles, hurdles, moments of insight, moments of enlightment, silver linings, lessons, information, new people, new places, new fears, new joys. And more. 

I mean hey man, it's a TRIP!

Jack's here. Time for dinner. Gotta go eat my cruciferous vegetables.

Revisiting Accepted Wisdom

I think this may just be the best, most informative and useful and RIGHT ON piece of writing I've found on breast cancer, to date. It's an article entitled: Revisiting Accepted Wisdom in the Management of Breast Care, by Harriet Beinfield, a licensed acupuncturist who works in Noe Valley, only five minutes from where I live. She and Efrem Korngold have been running the Chinese Medicine Works for oh, at least 25 years. Or maybe 30. I know this because I lived in Noe Valley for six years, back in the late 70s early 80s, and my flat was just two doors up from Chinese Medicine Works. But I never went there.

I'm ecstatic to have found the help I need, right under my nose, so to speak... (as ecstatic as one can get, given that Harriet's article packs a wallop at the end, a wallop that requires me to accept the fact that. . . well, read it yourself. I don't want to try and paraphrase it. It's too well written).

I spoke with Efrem on the phone already, and realized within five minutes that he will become a "key player" in my treatment. Finally. One big step closer to where I need to be.

Cleveland vs. Pittsburgh

Lenore pulled back the curtain and saw there was a birthday party going on across the street. Balloons waved from the iron gate. Little Milo must've turned ten. Lenore didn't much care. She let the curtain drop, and went back to filing all her printouts about cancer. The hanging file folders were neatly labeled now: Alternative Therapies; Chemo; Clinical Trials; Cutting Edge Treatments; Doctors; Health Insurance; Hormone Therapy; HRT; Lymphadema; Radiation; Resources.

The children's screams and laughter permeated the block. She could see the purple, yellow and green balloons in her mind's eye. Why had she pulled back the curtain? What had she hoped to see? Something new? Something other? She thought of her friend Hillary in New York, sitting at a Greenwhich Village café meeting a new friend named Eugenia, a retired designer who had lived in the West Village since the 60s, who was ordering tiramisu without the ladyfingers and who liked the new green chair that Hillary had lugged back through the city streets from somewhere.

Jack snored beside her in bed, the football game moving through the fourth quarter without him. She wondered if she could change the channel. Would he wake up if she switched it to Inside the Actor's Studio or Lifetime for Women? If that happened, he might want to have sex. Normally she would love to have sex with Jack, but tonight she was too tired. Her arms were tired. Her fingers were tired. Her neck and shoulders and back were tired. She ached all over, from hunching for hours over the stacks of printouts spread all over her living room floor.

Her mind was tired. too, from thinking so hard about cancer as she filed, trying to sort it all out, trying to make the necessary life-altering decisions, trying to find her 'treatment path' so that she could begin to travel down it without regret. Her eyes were also tired, tired and dry and burning from all the computer research she'd been doing.

One bit of information, at the end of a long and important paragraph, had stuck with her more than the others:

The use of adjuvant chemotherapy has shown a significant decrease in both the rate of recurrence and in mortality. In their meta-analysis of breast cancer adjuvant chemotherapy clinical trials, The Early Breast Cancer Trialists Collaborative Group reported that adjuvant chemotherapy produced significant proportional reductions in breast cancer recurrence for both women under the age of 50 (35% reduction) and for women 50-69 years of age (20% reduction).

The recurrence reduction was chiefly observed in the first 5 years of follow-up. Mortality was significantly reduced for women under 50 (27% reduction ) and among women 50-69 years of age (11% reduction). The difference in survival grew throughout the first 10 years. For women under 50 years old with node-negative disease the 10 year absolute survival benefit was 7% (from 71%-78%) while for women with nodepositive disease the 10 year absolute survival benefit was 11% (from 42%-53%). For women 50-69 years of age with node negative disease the 10 year absolute survival benefit was only 2% (from 67%-69%) while for those women with node positive disease the 10 year absolute survival benefit was 3% (from 46%-49%). Since most women who are diagnosed with breast cancer are older than 50 years of age the mortality benefit is less statistically significant for the majority of women diagnosed with breast cancer.

Lenore fell into the 3% category. So: If she did chemo, her chances of not dying in 10 years would be increased by a mere 3%. (However, if she combined chemo with hormone therapy such as Tamoxifen, that percentage might increase by 1 or 2 percent. She couldn't remember exactly. She'd have to ask Dr. Marcus what that computer analysis had said.) But even if it increased to 5%, what about the fact that the devastating long-term effects of chemo could increase her chances of dying of SOMETHING ELSE, i.e. heart disease or some other form of cancer CAUSED by the chemo, ten years down the line? How did she factor THAT into this neat little equation? And what about the potential long-term side-effects, such as permanent nerve damage from Taxol? Or permanent changes in cognitive functioning, i.e. severe short term memory problems?

Of course, her chances of recurrence would supposedly be lessened by 20% - not mortality, but recurrence. How did one interpret that alongside the mortality percentage of 3%? And besides, that 20% was based on women who probably weren't doing any other complementary treatments such as nutritional supplements, Chinese herbs, acupuncture or iodine! Maybe, if she did all or some of those things, her chances of recurrence in five years, without chemo, wouldn't be anywhere near as high as 20%. And oh yeah, why was it she'd been told that RADIATION, not chemo, was the main thing to do to prevent recurrences? Another question that needed answering.

Lenore's head hurt from thinking about it all. She didn't want sex. She wanted a massage. Her courage was tired. She opted for Cleveland versus Pittsburgh.

Patches of Sunlight

A patch of sunlight kept inching its way across my laptop computer screen this morning as I sat at the kitchen table trying to do my "iodine and breast cancer" research. I didn’t feel like leaving the warm and sunny kitchen, so I kept turning the laptop further to the right. Then I shifted over to the chair on my right, which I'd been avoiding for as long as possible because for some reason I like sitting on the outside chair rather than the inside one. Funny how these little things make a difference.

I went as far as I could with the iodine research but had to stop when I hit an obstacle: my inability to understand the role of thyroid hormones, which are connected to iodine levels, in relation to breast cancer. Whether iodine supplementation will help me fight my cancer, I can't figure out. Whether thyroid hormones will help, I can't figure out either. What I HAVE figured out is that I need to find someone who will help me figure this stuff out. Easier said than done.

Not a single doctor I've met up until now has been able to do this, because each doctor merely specializes in his or her narrow area of expertise, and each one basically espouses the prevailing "standard" treatment protocols that fall within his or her area of specialization. In other words, it's almost impossible to find a regular oncologist or radiation oncologist who has any comprehensive knowledge of: 1) alternative therapies that will make chemo or radiation less hideous, or 2) alternative therapies that will fight cancer ALONGSIDE conventional chemo or radiation or hormone treatments, or 3) the newest, cutting edge treatments, studies, or pertinent clinical trials.

It's also hard to find an oncologist (or breast surgeon) who will OFFER, of their own accord, to give you a broad selection of options for treatment. That's not what they do. What they do is give you one, two or three of the most obvious, standardized options. Period. Cookie cutter options. One-size-fits-all options.

If you want something better than this, something more complete, something more in-depth, and something more tailored specifically to YOU, then you have to go to your appointments armed with ALL THE RIGHT, POINTED, SPECIFIC questions and/or requests. If you don't ask, they won't necessarily tell you what you ABSOLUTELY need to know. And sometimes, even if you ask the right questions, your doctor WON'T KNOW THE ANSWERS, and you will have to keep asking other people until finally someone CAN give you an answer, or until you are satisfied that there is no answer to be had at this time.

Here's one example of something that no one ever mentioned to me: chemosensitivity testing. If my breast surgeon had told me that this existed, I would have had the option to ask her to save some tissue from my breast tumor, and send it to a special lab for a special analysis that could have predicted which chemo drug, exactly, would kill my particular cancer cells. But I wasn't given this information, and no tissues from my tumor were preserved. I don't know if it's even possible for me to do this test, now. It's one of the things I'm trying to find out (among many - and I do mean MANY).

Hopefully, I might have just found a "consultant," Dr. Mark Renneker, who'll be able to help me find the right doctor(s) and ask the right questions. I say "hopefully" because Dr. Renneker is deluged with requests for consultations. All I did was leave a phone message for him last Friday. Maybe his office will return my call tomorrow. I have no idea if he has time to take me on. All I can do is take deep breaths, hope, keep my fingers crossed, think positive. . . and stay committed to this path I've chosen.

The patch of sunlight made its way across the kitchen table and disappeared, so now I'm sitting at the round oak table, where my hands rest easier on the keyboard. I've printed out several more medical abstracts and articles about various breast cancer treatments and their short and long-term side effects, and must now move on to my attempt at earning a living - running the Writing Salon, in the cracks of time that I have left for anything not related to Settling on a Treatment Program that I Can Comfortably Live (or Die) With.

 

Questions are More Important than Answers

I'm making some headway in my "breast cancer treatment" research. What this means is that I've made some headway in my search to find someone who can help me figure out the following: 1) what the most important questions are to ASK, 2) who to ask those questions to, 3) how to find and then assess the answers to those questions, and 4) how to then find the doctors who willl work with me on coming up with my treatment, based on our JOINT assessment of the answers to my questions.

Finding that "someone" has been the challenge, and has not been easy. All I can say at this point is that I have a phone call in to A Possible Someone who is very busy and in great demand, because there aren't enough people offering the kind of "cancer consultation" service that he offers. I'm keeping my fingers crossed that he will be able to fit me into his overloaded schedule.

In the meantime, because this blog was originally intended to be a blog about writing and the writing life, I want to point out that even though its content of late has been about my breast cancer, AT LEAST THERE HAS BEEN CONTENT! I have continued to write, even when in the midst of being diagnosed with a life threatening illness. I do it because I've learned over the years that if I don't do it, I feel shitty. Incomplete. Damned up. Not as fully alive and aware as I want to be. I do it because I selfishly want to make myself feel better.

But I also do it because I like to think that there might be someone out there who will read what I write and somehow benefit from it. This is selfish too, because if I give something beneficial to others, I'm "getting" something beneficial for myself: the joy of giving and helping and feeling like I'm doing something worthwhile in this perplexing world. It's a win-win proposition.

And without any logical segue into this last paragraph, I want to show you some pictures of the kind of dog I'm thinking of getting (yes, I've also been researching dog breeds):

Is this not an adorable creature? And even  after the puppy stage (please ignore the jacket; I do not plan on dressing up my dog), I like the way they look: plain, unpretentious, sturdy. Like MUTTS! Only they aren't mutts. They're border terriers. Fabulous dispositions. Can be happy in the city or the country. Not big yappers. Loyal. Very smart. Bred to be hunters AND companions. Easy to groom. Not too big (11 to 16 pounds). And like to sleep with their owners. :-)

Dong Oh Food

I joined an online discussion group called Amazon, where women with breast cancer share information about the latest news in breast cancer research. One recent study caught my eye:

To investigate the chemopreventive effects of seaweed on breast cancer, we have been studying the relationship between iodine and breast cancer. We found earlier that the seaweed, wakame, showed a suppressive effect on the proliferation of DMBA (dimethylbenz(a)anthracene)-induced rat mammary tumors, possibly via apoptosis [cell death] induction. In the present study, powdered mekabu was placed in distilled water, and left to stand for 24 h at 4 degrees C.

 

The filtered supernatant was used as mekabu solution. It showed an extremely strong suppressive effect on rat mammary carcinogenesis when used in daily drinking water, without toxicity. In vitro, mekabu solution strongly induced apoptosis [cell death]in 3 kinds of human breast cancer cells. These effects were stronger than those of a chemotherapeutic agent widely used to treat human breast cancer. Furthermore, no apoptosis induction was observed in normal human mammary cells. In Japan, mekabu is widely consumed as a safe, inexpensive food. Our results suggest that mekabu has potential for chemoprevention of human breast cancer.

Rest assured, I am not nixing all conventional methods of cancer treatment. I am merely widening the scope of my research. To that end, I spent two minutes looking up mekabu on the web, just to find out (out of sheer curiosity, if nothing else) how to eat it. The pickings were slim, but I came across this website which, I have to say, made me smile, and smiling felt good:

Mekabu Powder Ball Is bottled in South Korea and brought to the Canada and USA and exclusively distributed in USA and Canada by Dong oh Food Canada.

We based on Toronto, since 1998. Company was founded and operated under the private ownership of those, who dedicate their work to make Mekabu Powder Ball leading nutritional product.

DFC (Dong Oh Food Canada) is involved in all stages of product's manufacturing and distribution. Divers team in South Korea is our contractor. They harvest raw seaweed by hands, cutting it with knives and collect only sporophyll (Blossom) of Brown Seaweed -Undaria Pinnatifida on small rafts.

Our quality Control team at the manufacturing plant make sure, that the process by LOW MOLECULAR WEIGHT COMPOUND TECHNOLOGY is done in accordance with patented technology and hygienic standards.

Mekabu Powder Ball which is a processed to a ball shape by a our patented technology process and drying procedure without any sugar coating and being gel capsulated therefore it is 100% sporophyll of Brown Sea Weed.

One of the best analytical research labs in pusan runs analysis on each new lot of processed Mekabu Powder Ball. Certified nutritional product manufacturer, Dong Oh International seals them in consumer packaging for further retail distribution.

Dong Oh Food Canada is not large company. Everyone here is part of what our product is today. Any time you need to ask question, to have advice or to place on order, there is always somebody you can count on. It is our pleasure to here from you and we hope, that our dialogue will benefit to you in your way to the healthy living.

Did I order my mekabu powder ball? Not yet. First I want to find an oncologist who is open to actively and respectfully working with patients who want to use CAM (complementary alternative medicines) in addition to (or possibly in place of) conventional therapies. In other words, if I don't want to do chemo, I want an oncologist who will WORK with me to customize a treatment plan that I can live with.

After that, who knows? Maybe a combination of tamoxifen and mekabu will benefit to me in my way to healthy living. It warms my heart to think of supporting some little Mom & Pop corner mekabu store.

What Lenore Saw

When ants wandered into the sugar bowl, Lenore saw angels. Everything in the world had a hidden meaning.  Houses, cocks, hats, skies. Tapioca. Desert flowers. They were all hieroglyphics.  When she looked at her cancer, she saw what she had loved, and what she had lost. She saw fragments of poetry scattered all around her. She saw where everything had fallen apart, and how it could all begin to come back together. She saw a crack between then and now. She saw a realm where many things needed undoing — or unraveling. It was a miracle, a miracle that was problematical: Stage II, ductal and lobular, intermediate grade invasive carcinoma. Offered up to her on a silver platter.

Decisions Decisions

Before deciding about adjuvant therapy (ie. chemotherapy, radiation, Tamoxifen), I have to think A LOT more about the following questions:

• Is there evidence that adjuvant therapy helps women (who have a cancer similar to mine) live longer or have a lower chance of their cancer coming back?
• What's the chance of my breast cancer coming back?
• How much will adjuvant therapy help to reduce the chance of cancer returning?
• What are the side effects of adjuvant therapy?
• Do I and my doctor think that the potential benefits outweigh the risks?
• How will I feel if my cancer recurrs, and I did take adjuvant therapy?
• How will I feel if my cancer recurrs, and I didn't pursue adjuvant therapy?

This could be a full time job. I squeeze it in where I can. Someone referred me to the Annie Appleseed Project a couple of days ago. In fact, that someone knew Ann and gave me her phone number. She actually called me back, from a phone booth in Michigan where she had traveled to give a lecture. We spoke for ten or fifteen minutes about the "challenges" of learning about breast cancer and how to deal with it on every level. Ann (Annie Appleseed) was first diagnosed with breast cancer many years ago.  Like so many other women, she has her particular breast cancer story.

Listening to Doubts

Finally: For the first time in many many days, I feel upbeat again, positive (cheerful, actually). Why? Because I'm free. Free from the weight of the world that I've been dragging around for weeks as I tried my damndest to reconcile myself to the whole idea of doing chemo. But I couldn't. I was a hexangonal peg trying to force myself into a round round ROUND hole.

Finally: I have let go of the notion that I wasn't allowed to change my mind, follow my heart, listen to my doubts.

My doubts were screaming at me, not merely whispering, and I still wasn't giving them their due. I was doubting my doubts. Not wise.

Finally: I am committed. Committed to NOT doing chemo.

I'm a supremely ordinary person in most ways. But I have my visionary moments, and I believe I’m highly intuitive (I just have to learn to listen to my intuition more carefully and consistently). And I've lived a fairly unconventional (in some ways cutting edge) life, ie. choosing not to marry, choosing to be a single mother, choosing to do a drug-free homebirth, and choosing to work only part-time for more than 20 years, which entailed living on the financial edge of disaster (but with a creative and innovative flair!). I've been an independent woman. I've made up my own mind, for better or for worse, about all the important things.

Now I have made up my mind to forgo chemotherapy, not because I don't want to live but because I want to live according to the beat of my own drummer. Whatever this decision computes to in terms of a percentage decrease in my "odds of survival" (three percent? five percent?) I plan to counteract by doing alternative therapies.  I'm working on figuring out what combination will be best for me  (Chinese herbs? Acupuncture? Nutritional supplements? Reiki? Chi gung?). I'm also working on honing my own custom-made version of "soul work."

So. For now, chemo will not be a part of my survival equation. I'm leaving myself an opening to change my mind again (never say never). But for today, this is my decision and my choice.

When in Doubt...

The beginning of wisdom is found in doubting;  by doubting we come to the question, and by seeking we may come upon the truth. —Pierre Abelard

Visit from a Sledgehammer

I'm not writing this from the operating room of Sequoia Hospital, because yesterday I cancelled my port-a-cath surgery, as well as the chemo that was supposed to begin tomorrow.

Did I do make this choice because I am a victim of the evil Health Net? No. I made this choice because the evil Health Net inadvertently did me a favor. I didn't reveal this part of the story in Monday's post, but now I will: Fear and outrage were not the only feelings I had when I received that certified letter. There was another feeling that rose to the surface: profound relief. As my outrage subsided, it occurred to me that I had just been given an "out." If I wanted to take more time to decide if chemo was right for me, or if I wanted, right then and there, to back out of it altogether, this was my chance.

I could have backed out anyway, of course, without ever having received that certified letter, but it would have been much harder, because everything was already set up. The wheels were in motion. The surgery was scheduled. The chemo was scheduled. I had already bought my wig, for godsake. And four HATS, including a "sleeping cap!" And lots of ginger ale, crackers, and pudding for the nauseau. And special toothpaste and mouthwash in case I got mouth sores. Friends were planning to bring meals over. My friend Kerry even bought me two new robes, after I mentioned to her that I didn't own a robe. And I've been working like a maniac to get all sorts of Writing Salon stuff done ahead of time, so that I wouldn't have to deal with it during chemo. The wheels were not only in motion, they were spinning FAST.

Slamming on the brakes at this late point would have been difficult. And honestly, I doubt I would've had the guts to scream "Wait a minute, wait a minute! STOP everything!"

The scumbag message from The Evil Health Net was my out. My sign. The outer manifestation of my inner doubt, coming to knock me over the head with a sledgehammer.

So, after three days of intensive soul-searching and re-researching, I took my out, nixed the surgery and the chemo. Over the next few days I will carefully reevaluate my decision. I want to talk to a couple more people other than my oncologist, who is obligated to recommend chemotherapy. That's his job. That 's what he does best, and what he believes in. It's his lifework.

My job is to consider his recommendation, while at the same time considering other options, while at the same time considering my deepest knowledge of my own body/mind/soul and spirit — my way of being in the world. My job is to assess the significance of an "odds of survival" percentage that will increase if I add chemo to my treatment plan  — while at the same time assessing the significance of factors other than that percentage. Many other factors, which I will talk more about later.

Meanwhile, I still need health insurance. Those fuckers.

Our American Healthcare System at Its Finest

Where to begin?  How to describe my day?  It started out with a big scoop of whey power in fresh orange juice, plus two ImmPower capsules, followed by a spirit-lifting acupuncture session that included a talk with the acupuncturist, Dr. Jeff Draisin — a talk that felt HEALING to me, a talk that addressed me as a whole person rather than as merely a CONTAINER for cancer. A talk that helped me cope with my fears, which are huge despite all my attempts to prepare myself — to be brave, graceful, strong, positive. To see the silver linings. To keep my sense of humor. To accept that dying is a part of living, and disease a part of dying. . . blah blah blah.

It ended when my postman rang the doorbell to deliver a certified letter from my health insurance company, HealthNet, which said (in so many words) that their "risk analysis" unit had decided to launch an "inquiry" into my recent claims, in order to investigate the "possibility" that I might not have answered all the questions completely or honestly enough (as in: committed fraud?) when I applied for my policy back in June.

If their review concludes that I did something wrong (which I didn't), then my insurance policy could and would be rendered null and void.

What do they think? That I KNEW I had cancer before I applied? That I was hiding this information from them? That I was sitting on a prior cancer diagnosis, biding my time until I found just the right sitting duck insurance company to bamboozle?

HealthNet has been receiving bills for all my breast cancer stuff for the last two months. I've had appointments with two surgeons, two oncologists, a pathologist, a breast cancer geneticist, a radiation oncologist and I forget who else. I've had an MRI, blood work, lab work, and an echocardiagram. I've also undergone two surgeries: a lumpectomy, and a re-excision of the lumpectomy combined with a sentinel lymph node biopsy.

But only this afternoon, two days prior to my scheduled surgery to get the port-a-cath, and three days prior to my first scheduled round of chemo (!!!), do I get this certified letter, which concludes by saying that until they have gathered all the information and completed their "review," they're not paying for anything. Nada.

Where does this leave me? Does it mean I will have to cancel the chemo this week even though I was told by my oncologist that the benefits of chemo would go down if I waited longer than 4 to 8 weeks after my last surgery to begin it?  If I cancel it, how long will I have to wait to reschedule it (assuming that HealthNet ultimately backs down)? If I don't cancel it and  HealthNet screws me, then my life savings could be wiped out.

Maybe I'm supposed to see this new development as a blessing in disguise.  Maybe this is my out, my chance to walk away from the horrors of chemo and opt for some other treatment route. But even if I did that, I'd still want HealthNet to cover the bills I've already racked up, and to cover the upcoming radiation and Tamoxifen treatments.

It's ironic to have had the chemo rug, which I never wanted to be standing on in the first place, pulled out from under me. I feel as if I've already had a round of chemo pushed into my veins.

Port-a-WHAT?

This coming Wednesday I'll have my third surgery in less than two months. (#1 was the lumpectomy, which required "twilight" sedation. #2 was a re-excision of the lumpectomy plus a sentinel node biopsy/removal of four lymph nodes, which required general anesthesia.)

This Wednesday's "porta-a-cath" surgery will also require general anesthesia (darn, I was hoping for another one of those nifty "twilight" sedatives because they're less dangerous than general anesthesia, and less likely to cause post-op nauseau). But my surgeon, Dr. John O'Halloran, explained that I'd be better off with the general in this case, because sometimes patients jerk during twilight sedation, and jerking isn't such a great idea when somebody's messing around near your major heart arteries and your lungs.

For those of you who are curious, here's "the why and the how" of getting a port-a-cath, which I lifted from The Breast Care Site:
 

Women who have intravenous chemotherapy as a part of their treatment plan find having a semi-permanent IV catheter surgically implanted is a safe and comfortable option. Chemotherapy is given over months with breaks in between treatments to allow the body time to regenerate blood cells. Patients are exposed to multiple needle sticks to draw blood specimens for tests and to administer medication. The veins in the hands and arms eventually become tough and scarred as well as diminished. To preserve the smaller peripheral veins, Oncologists recommend implantation of a central intravenous devise that can be used for drawing blood samples as well as a reliable conduit for delivering the chemotherapeutic medication.

Another reason for choosing a larger central vein is that the larger the diameter of the blood vessel, the more blood volume is present to dilute the medication. Some chemotherapy medications are caustic to the blood vessels and can cause great tissue damage should they leak through a smaller blood vessel. For this reason, the subclavian vein is used to thread the implanted IV catheter (plastic tube). This vein is located under the collar bone and runs into the vena cava, the largest vein in the body.

"To preserve the smaller peripheral veins, Oncologists recommend implantation of a central intravenous devise that can be used for drawing blood samples as well as a reliable conduit for delivering the chemotherapeutic medication."

Most physicians recommend a system that is completely enclosed within the skin called a port-a-catheter. The port is accessed by a special type of needle and is only used to administer medication or draw blood samples. No tubes or dressings are necessary after the port is used and flushed. The infection rate is very low for this type of device.

An outpatient surgical procedure is usually performed to place the port. It usually takes about one hour for the procedure. An xray is done after the procedure to verify placement of the device. The patient will feel a small bump under the skin where the port is placed.

Complications are rare with this type of device. During implantation, there is a 1% to 2% occurrence of puncturing the patient's lung. This is usually requires a day or two of hospital observation. Other complications include infection and clotting of the device. Both of these conditions are treatable. The port requires monthly flushing when not in use. After the chemotherapy treatment program has been completed (after 3.5 months, if none of my twice-a-month treatments get postponed due to low red blood cell counts), the port can be removed. (Yay!!!!)