Following is Part II of the article on homeopathy for breast cancer, started by Ralph Moss in last week's Cancer Decisions newsletter. There is one paragraph in particular that I LOVE in this article. I have put it in bold:
Last week I began a discussion of the very important new paper on homeopathy and cancer from the University of Texas M.D. Anderson Cancer Center (MDA). I conclude, with references, this week.
Phytolacca's 200C dilution takes us into a realm of the bizarre. 200C means that there would be a single molecule of pokeweed in "10 to the minus 400" molecules of solvent. However, there is a total of "10 to the 80th power" atoms in entire known universe. So a 200C dilution would require "10 to the 320th power" more universes (yes, whole universes) in order to simply deliver one single molecule of Phytolacca in the final substance!
Is it any wonder that many scientists regard homeopathy as logically impossible and ascribe any therapeutic benefit to the placebo effect?
There is no end of critics of homeopathy on the Internet and elsewhere, who consider homeopathy to be quackery and believe it is their bounden duty to expose this fraud whenever possible. They have trouble stretching their minds and imagining that there are other possible explanations for the action of homeopathic remedies—in other words, there are more things in heaven and earth than are dreamt of in their philosophy.One such innovative theory is of "water memory," which was proposed by the French scientist Jacques Benveniste to explain the purported therapeutic powers of homeopathic remedies (Benveniste 1994). With this MDA publication, open-minded scientists may need to revisit Benveniste's original claims.
I think the real question is whether science is a set of dogmatic "facts" determining in advance what is possible or impossible, or a methodology for rigorously testing hypotheses and following the data wherever it leads. I applaud Moshe Frenkel, Lorenzo Cohen, and their coworkers for taking the second path. To me, they have performed a great service to science, at considerable personal risk to their own careers.MD Anderson is ranked (by U.S. News) as America's number one cancer center and so it will be particularly interesting to see if the professional skeptics will try discredit this study with their usual sort of personal attacks. I hope that this outstanding paper will be a tipping point, wherein conventional science is finally forced to re-evaluate its rigid opposition to this puzzling but fascinating mode of treatment.
"Homeopathy has been a very controversial system of care, commonly practiced in Europe, but not commonly used in cancer care," Frenkel recently told me. "This is the first scientific study that investigated the effect of homeopathic remedies on breast cancer cells. This study raises the exciting possibility of a window of therapeutic opportunity for preferentially eliminating breast cancer cells with minimal damage to the surrounding normal mammary tissue by using homeopathic remedies."
One wound, many veils. Many veils for one wound. I have begun to find ways to heal my wound. . . also to disguise it, protect it, name it, ignore it, honor it, integrate it, transform it . . .and, I hope, accept it.
This mastectomy wound, btw, is a pleasant distraction from the ongoing saga of shingles. Exploring its veils pulls me away from the scream of nerves gone haywire. The pain is running its course.
Meanwhile, you learn to wait and to cope. You think about making more art and soup. You continue to work. You freak out and calm down. You call yourself "you" instead of "I." You try on new perspectives, play with distancing yourself from yourself.
Then you return to your cup of morning coffee, 5:20 a.m., the hum of the heater, the cat by your feet, the quiet both inside and out.
I remind myself that soon it will no longer be a wound. Soon it will be a scar. Wound to scar. Scar to . . . ?
In keeping with the spirit of "don't bore your readers," I decided to hang on to my shingles outbreak for another week or two at least. You know what they say: People prefer to read stories about conflict and how others deal with it. They prefer to read about obstacles and how others overcome them. If all I ever posted were writes about how peaceful, calm and uneventful my life was, it would be much more difficult to make those writes riveting and entertaining.
I'm not saying that my breast cancer/illness writes are all riveting, by any means, but you know what I mean, right? People like stories with DRAMA.
So my current drama continues to be my fucking shingles. I thought, prematurely as it turns out, that I had moved past the worst. But no no no, dearie me no. I've just been through another week of motherfucking intense, relentless, exhausting constant nerve pain, and let me tell you, DO NOT ever get shingles.
I'm not a fan of most vaccinations, but when I heard recently that there is a vaccination for shingles, I thought, "Now there's one I might actually advise people to seriously consider." I'd only suggest that you be very careful, check it out/research it first, make sure that the vaccination has a good track record re: side effects and/or any chances of it causing an actual outbreak, which you do NOT want. And if it seems safe, get it. Get it, get it, get it. My two cents.
What else? Not much. My life right now is all about learning about chronic pain. I fell asleep thinking about how I rarely become deeply empathetic about other peoples' problems and struggles unless I have experienced the same ones, myself. This led me to wonder how some people manage to be empathetic even though they haven't experienced something personally. These people must be really highly evolved beings. Old souls. Or maybe they HAVE experienced the same things, only in past lifetimes. I'm not saying I believe in past lives, but the concept sure helps to explain how certain Mother Teresa'ish type people become so empathetic.
I once read an article about that woman who goes around the world hugging everyone -- what's her name? Ama? Amma? something like that -- and the article said that she was running around trying to help all her village neighbors when she was but a toddler. She apparently burst out of the womb filled to the brim with empathy for others. Past lives up the wazoo, perhaps?
The phrase "chronic pain" was merely an abstract phrase to me, up until now. I knew people experienced it for all sorts of reasons, and I thought, "That sounds awful," or "That must be difficult," but I didn't feel it viscerally. I couldn't imagine it, even though I pride myself on having a great imagination. I now remember an old boyfriend of mine who suffered from chronic back pain, really bad -- he'd had more than one major surgery on his back, had been bedridden for months afterward. Every single day that I knew him (for eight years), he had back pain. I sympathized, but I didn't empathize. In retrospect, I understand why he was the way he was much better now. I see how his life revolved to a great extent around one goal and one goal only: dealing with the pain, minute by minute, hour by hour, day by day.
He resorted, to a great extent, to pot, coke and sex. This was how he self-medicated. He managed to run a successful business, but the second he got home from work, he headed for his bed, a place to lie flat and rest his poor back, partial relief from the pain. He opted for music, drugs and the distraction of a highly erotic life. Would he have been exactly the same sort of man had he never been faced with this chronic pain? I wonder.
Yep, I wonder this as I take another pain pill followed by a stiff shot of vodka straight up, my TV on nonstop to distract me even more from this exhausting, hellish "challenge."
I am not asking for pity, just patience with me as I limp around at half-mast, venting and giving you my novice's "report" on this phenomenon known as chronic pain (which I pray will not be chronic beyond another week or two).
Last night I was thinking that maybe...after I get settled with a new revised post-mastectomy, post-shingles treatment protocol...I will put "My Great Breast Cancer Adventure" to rest for a while. I wouldn't abandon it entirely, but maybe just limit it to periodic progress updates every couple of months.
Hopefully, the updates will be nothing more than boring reports of "still NED" (no evidence of disease). That is, no evidence of disease progression beyond where it's at right now. And when I do the updates, I can always add some interesting new bit of information re: new or improved studies or treatments for breast cancer.
But what would this blog become if no longer primarily the story of one woman's breast cancer saga?
Well, I'm not sure. It's another one of life's delicious unknowns, which I am so fond of.
A new saga...a new story...a new twist or turn.
We shall see.
Originally uploaded by my.third.eye
It seems that the worst of the shingles pain may be over...fingers crossed...thanks to: 1) the normal course of shingles, 2) the "natural" medications I got from Dr. Cowan, combined with Tramadol pain pills and acyclovir, 3) the expensive but helpful topical analgesics I got from Scarlet Sage alternative supplements shop on Valencia Street.
I have had a headache for the past 18 hours and feel as if I've been run over by a truck, but the nerve pains have lessened considerably - and the sensation that scalding water was poured onto my skin where the hives are has also decreased to a simmer rather than a fire.
Today Jack and I are going to attempt to get it together to make a batch of Bieler's Broth, plus a big pot of Italian vegetable soup that will, hopefully, last us several days.
I had planned to spend Friday, Saturday and Sunday getting going on the Writing Salon Spring Session scheduling and website update — a quarterly project that always takes me a couple of labor-intensive weeks to do — but that plan didn't pan out, of course. I need at least one more day to ignore the reality of my Workaday World. I might take a short walk with Jack and Ms. Livvy B. After that, I am going to spend most of Sunday in bed watching an On Demand movie or two, napping, popping meds, and smearing ointments onto angry blisters.
I'm still saying my mantra prayer, too:
Oh Great Mystery, divine life force of my being, unto the Father and Mother within come forward this moment, this hour, and walk in front of me, help me do the right thing, help me say the right thing, help me stay on the path that is right for me in all that I am and strive to be. In kindness and in love, so be it.
In my pre-Lucille Clifton post, I shot straight from the hip, laying out my naked "truth" re: how my post-mastectomy pain, at the beginning of week three, had taken a sudden turn for the worse, much to my surprise and dismay. I had been doing so well! Then BAM! I was hit with some kind of deep nerve pain that got worse and worse, every day of week three (this past week).
I assumed that this belated rise in pain was normal, even though I didn't understand it. When I saw the surgeon on Thursday morning, I asked why it had suddenly gotten so much worse. She said, "Oh, well, those "prickles" are injured nerves coming back to life. It's normal, and you probably won't be out of the acute phase of pain until six weeks has passed."
I told her I wouldn't exactly describe what I was feeling as "prickles." I did HAVE some prickles, yes. But beyond the prickles, I was experiencing intensely burning, stabbing, throbbing bouts of pain in my chest and all the way around my armpit and on to my upper back. None of my pain medications helped much at all. I didn't belabor any of this, however, because I felt embarrassed that, apparently, I wasn't very good at handling ordinary old "prickles."
The surgeon also paused at one point, and said, "What are those red spots?" referring to seven or eight red spots that had appeared a couple of days earlier. I told her I assumed that I'd had a mild allergic reaction to the tape that had held a gauze pad on. (In retrospect, this assumption made little sense, given that I'd been using the same tape for more than two weeks, no problem.)
Anyway, long story short: I went home, and a few hours later those few tiny red spots had transformed into fiery, raging, blister-filled hives. In addition, the same hives had burst out in a huge area starting near my armpit and spreading onto a big circle on my upper back. It was then that I realized that the severe nerve pain I'd been experiencing corresponded in location with these patches of hives. And I thought, "Shit, I bet I have shingles." I've read about shingles, so I knew the symptoms.
For the next 24 hours, the pain increased to the point that I thought I would die. It was 20 times worse than any pain I experienced because of the mastectomy. Really a merciless, relentless kind of deep-inside-your-body nerve pain, combined with sharp burning pains where the hives are. As if someone poured scalding water on your skin.
Then I called Doc Cowan's office and begged to be squeezed in and seen. And yes, he said I have a "classic" case of shingles. Then he prescribed some stuff that will "maybe" ward off future attacks.
The GOOD NEWS is that anyone reading this blog (anyone with breast cancer or a personal interest in getting as much mastectomy information as possible) who read my earlier post about how shitty I was feeling during Week Three of my mastectomy recovery can now relax, because it has turned out that the major pain was NOT due to the mastectomy (other than that it may be that the injuring of the nerves during the mastectomy is what 'activated' the shingles; if you google shingles, you'll understand what I mean by 'activated.')
The BAD NEWS is that I have freaking shingles. At best, I will suffer from this pain for several more days and then it will go away, never to return. At worst, it will return in a few months, either as another outbreak OR as something called post-herpetic neuralgia (PHN), which is when you feel the nerve pain but don't get the hives. And guess what? PHN has no cure and some people get ongoing recurrences for the rest of their lives - recurrences that might be infrequent OR really frequent or CONTINUAL (which I cannot imagine).
What am I doing now? Well, I've put breast cancer on the back burner and am madly researching what to do to try and prevent PHN from happening. As usual, it's controversial and everybody has different opinions, including the doctors.
In a little while, Jack and I are heading out to Rainbow Grocery and/or Scarlet Sage apothecary, in search of special potions that might at least help alleviate the surface pain, if not the deep nerve pain. Cowan gave me "some" stuff, but nothing topical and nothing that has yet had any effect on the pain. I'm going with Jack, rather than just sending him out with a shopping list, because sometimes the pain feels worse if I am just sitting and focusing on it. Getting out and distracting myself can help...until it gets so bad that I start snapping, and acting crazy and illogical and frantic. Then I need to closet myself away in the bedroom and pray.
Writing Salon poetry teacher Julie Bruck sent me this poem today (thank you, Julie!). I hadn't thought about Lucille Clifton in a long time, so I googled her after reading this, and was saddened to realize that she died this past Sunday, Valentine's Day, at the age of 73. But I was glad to see that she survived for 16 years after being diagnosed with breast cancer (better than 15 years...or 14 or 13 or 3 or 2 or 1).
by Lucille Cliftoni was leaving my fifty-eighth year
I had my mastectomy on Jan. 27th, exactly three weeks ago. People have commented that I seem amazingly "together" — all better now, healed up and "back to normal." Able to function just as always, no problemo. Wow! Cool. What a strong woman!
I could allow this misconception to continue, in order to hear the applause for my great performance, but I choose not to because this would be misleading, and I don't think it's such a great idea to mislead people about something like this.
Yes, I am healing nicely and so far haven't had any complications or nightmarish experiences. Yes, I am blogging and working at my Writing Salon job and doing household chores and cooking and washing dishes and all sorts of things.
But I am nowhere near "all healed up" or back to normal or able to function "as usual." It's difficult right now. My left arm doesn't have full range of motion and won't for some time to come. I have an assortment of distracting, disturbing, distressful aches and pains where my breast was, and all around where it was, and in my armpit and upper arm and side and even my back. Nerves were cut and/or injured. Nerve pains really hurt. Coping with continual aches and pains from a major wound is exhausting, and so although I start out each day feeling pretty darn chipper, I run out of gas much sooner than usual (I am typing this at 7:30 a.m., not 1 p.m., not 3 p.m., not in the evening). I get tired much more easily right now, as is to be expected because my body is still working very hard at healing.
I move much more slowly. I can't lift the container of dog food. If I want to put others at risk, I can drive but if I had to steer sharply, there might be a problem because I don't have full strength or function on the left side of my body. I've done it, and I'll probably do it tomorrow in order to drive myself to the surgeon's office for another appointment. Jack can't get off work.
Just because I'm blogging and can still write and think, it doesn't mean I wouldn't be really really glad if my sister were still here helping out. I could use that right now. Help. My sister deserves a great big post all to herself, and it's coming soon, along with a photo or two of her. The week that she was here right after my surgery, she was an angel. It was WONDERFUL. She was so so so helpful, so THERE, so understanding, so intuitively able to see what I needed and to offer it before I ever said a word. I learned that my sister is a very good observer. She pays close attention, and she learns a great deal about the people she knows, by just sitting back quietly and watching.
During the that week when she was here, I was able to work and blog some BECAUSE she was cooking for me, keeping the kitchen spotless, walking the dog twice a day, shopping, etc. She even washed my hair for me.
I would say that I am operating at about 60 percent right now. My other angel, JK, who I have written about already, continues to come here once a week for four-hour chunks. This week he is coming twice, for eight hours total, because he sensed, after reading one of my email replies to him, that I really needed it this week, and he was right. He shops for me at Good Life and Rainbow, he walks Olivia, he has TAKEN OVER dealing with my health insurance company - helping me to deal with getting reimbursements, finding out about stuff like whether and how I am covered for prostheses, and more. He is helping me start the process of trying to find a personal assistant, because now I know how badly I need one. He has washed my dishes. He has offered to help me get the WS taxes done because he knows how behind I am. He has offered to try and help me with some other WS administrative work. Like my sister, he too is incredibly good at anticipating my needs and offering before being asked.
I don't know how "normal" I am compared to other women who are healing after mastectomies. I'm sure it must vary enormously from woman to woman. But I suspect that most women are not back to "a hundred percent" after only three weeks. In fact, I spoke with one woman who had her mastectomy almost seven MONTHS ago, and she is still getting physical therapy and special massages. She is still getting lots and lots of help in her daily life, which has definitely not yet gone back to normal. Of course, she is going to have reconstruction, which makes for more complications and more surgery coming up. I'm not having reconstruction, so my surgery was simpler than hers was.
Therefore, I don't expect to be where she is at, after seven months has passed. But I'm not totally BACK yet. I'm still taking Tramadol pain pills intermittently, or popping 800 mg Ibuprofens. I'm still cringing when I look at the jagged, wrinkled, puffy cut line that is still clotted with dry blood and sutures that haven't disintegrated yet. I'm still tentatively looking in the mirror, carefully touching the pink swollen areas, the sore spots, the bulges where fluids have accumulated and things are not yet by any means back to normal. It's an ugly wound. I know it will get better, but right now it's still pretty gross looking. Lumpy, bumpy, jagged and ragged.
Also, I'm still unable to sleep in normal positions, so my back hurts a lot and I wake up a lot more during the night.
None of this is insurmountable. None of this is horrible. I'm just saying: I need more time, and I am grateful whenever someone offers to help.
Oh, and the reason I put "karma (?)" in my subject line is because I figure that I'm getting back exactly what I've given (or not given) to others who were in need, in the past. I gave SOME help to friends/acquaintances every now and then. But I didn't give a lot. I didn't see a lot. I ignored a lot. And I made a lot of excuses as to why I wouldn't be "the best" person to help out, and why I was sure that others would be much better helpers than I could ever be. I said things like "I just don't have nurturing, 'earth mother' genes," or "I'm better at abstract than concrete." Bullshit like that. But I never checked to see if those "other, better" helpers ever appeared. I just assumed, and went on my merry way.
So...karma. The great teacher.
(In fact, I would have to say that I have gotten more help than I deserve, most likely. . . so maybe the "what goes around comes around" idea is a load of crap. As usual, I don't know. The Great Mystery of life continues unabated.)
I know I said I was going to start keeping my photos on a separate blog, and I did start that other blog, which is called My.Third.Eye Photograpy. But trying to keep three different blogs going (this one, the photo one, and the one I do for the Writing Salon) is like trying to keep three plates balanced on top of sticks all spinning at the same time (without ever letting one get so slow and wobbly that it falls crashing to the floor).
So mostly I just post to this one, and occasionally I post to one of the extremely wobbly others. Yesterday I posted one I like of Olivia on My.Third.Eye. Today I'll post one here - what the heck – I'm living dangerously, breaking my own rule.
But before I post my pic, I should probably say at least one new thing about breast cancer. Let's see... oh I know. Because of breast cancer, I learned how to make gluten-free banana pancakes. The ones I made this morning came out particularly nicely:
1 banana, mashed
1 egg, mashed in with mashed banana
8 crispy almonds (crispy almonds are raw almonds that have been soaked for at least 8 hours in salted water, then dried until crispy/crunchy in a very very low-heat oven or dehydrator); I get mine from Three Stone Hearth in Berkeley because mostly I'm too pressed for time to make them myself.
Pinch of salt (Celtic sea salt)
Fry this "batter" on medium heat in either ghee or coconut oil or a mix of both, until they look the way you like your pancakes to look. I think they cook better if you make two small ones rather than one large one.
Add a healthy topping. I like blueberries, crispy walnuts, and a dollop of yogurt, yogurt cream, or creme fraiche (or you could use sour cream).
SO GOOD you may want to double or triple the recipe.
This is a photo I took at our friends' wedding reception a couple of months ago, of the bride and groom doing their "love is lovelier the second time around" dance. I thought their body language was so perfect.
Yep, still here. I'm tellin' ya, you just can't get rid of me. My writer DNA may slow down at times, but it never really goes away.
I spared you a recounting of how I felt after I went to see the surgeon for my first check-up after the surgery (one week after), because although I felt surprisingly well, physically, I felt not-surprisingly depressed by the surgeon's recommendations re: What she thought I should do next:
"You have four options:
1) Do nothing else [she rolled her eyes at this one, though]
2) Let me go back in, in two weeks, and take out another 15 to 20 lymph nodes [to be on the safe side; there is no way of knowing if any of those nodes would be cancerous, but surgeons prefer to err on the side of taking healthy nodes rather than risking leaving any cancerous nodes behind, even though getting every single cancerous node does not necessarily improve your length of survival and DOES increase your risk of lymphadema]
3) Get radiation instead of any further node removal [but she made it clear that she thought this was not as good of a choice as node removal]
4. Do both node removal AND radiation
She left out the option of chemo, probably at least partly because she knew I'd say "forget it."
And she added that I should, without question, get started on an estrogen-blocking drug such as tamoxifen or Arimidex, post haste.
After the appointment I dragged myself home and spent the next week pretending to be upbeat and positive, but actually feeling lost, confused, scared and depressed. . . not because of the mastectomy but because of that crappy list of crappy options.
I felt ALMOST certain that I wouldn't choose radiation or any more node removal.
The only two options I could bring myself to consider were either "Do nothing" (except more pure alternative treatments, but I didn't know which ones) or "try again to take an estrogen blocker, albeit not tamoxifen or Arimidex (which I tried for a month four years ago and swore I would never take again because the side effects were such a nightmare), but maybe another one, such as Raloxifene, which might be less horrible in terms of side effects...and which is known to be protective rather destructive to the bones (a problem that, with Arimidex, greatly increases risk of osteoporosis).
The one bright spot on the horizon was my upcoming consultation with Dr. Mark Renneker. I figured that even though his recommendations would likely be similar to the surgeon's, at least he might be able to help me clarifiy details and/or feel less depressed, somehow. I also knew that we'd go over the pathology report that I got after the mastectomy, in a much more thorough way than the surgeon went over it with me (quickly, minimally, nothing said that added more depth to my knowledge or understanding).
Much to my surprise and elation, the consultation with Renneker went much better than I expected it to. We did go over the path report with a fine toothed comb, and the first thing he said to me was, "Jane, this is GREAT!" What he meant was that it is great within the context of what it IS. That is, the fact that I had three positive nodes was not great, but the fact that they were the least aggressive cancer that a cancer can be (less aggressive, in fact, than my original cancer four years ago) was great. My "Ki 67" was also better than four years ago, down from 15% to 5%.
To me, this says that although I got a recurrence, my alternative protocol might well have had something to do with this "less aggressive" direction that the cancer has gone in. For example, one thing I've heard/read is that although women who opt for chemo and/or radiation may have fewer recurrences, when they DO have recurrences, those recurrences tend to be more aggressive cancers than those of women who have done hormone replacement therapy for a while.
Mark also explained some stuff to me about something called "reverse mapping" (important info. for any woman concerned about node dissection and the risk of lymphadema) and also about the standard test for Her2 positivity or negativity. I am Her2 negative and hormone receptor positive. If I were Her2 positive, my treatment plan would be very different and would almost certainly include the drug Herceptin. Well, at a recent breast cancer conference that Renneker went to in San Diego, one of the speakers was the man who invented Herceptin. And one of the things he talked about was that around ten percent of all women who test negative for Her2 are actually positive. The good news, however, is that there's a better test now, the FISH test, which cuts the rate of false negatives way down. But do all doctors know about or recommend the FISH test? No. Change is slow. It helps to have a doctor like Renneker who can give you the lowdown on new developments. Then you can go to your doctor and inform THEM.
Also, Renneker did not concur with the surgeon re: the need for more node removal, and his list of options totalled seven rather than four.
One of those options was, in my opinion, brilliantly innovative. He came up with it for another woman who had a case similar to mine and who also had a mindset similar to mine. She too had refused radiation, further node removal, and systemic estrogen-blockers. She told Renneker that she'd rather die than ever take Arimidex again.
So they came up with a "compromise," which was to try having Arimidex made up (at a compounding pharmacy) into a topical cream, which she would apply to her armpit ONLY, because the armpit nodes were the main area of concern re: cancerous nodes that might still be there. (This "solution" was indeed a compromise, in that it didn't address the possibility of mets already lurking somewhere else in the body. But at least it addressed the area of most obvious concern, and offered an option that I think is much better than node removal or radiation.)
I asked Renneker why the cream wouldn't just be absorbed and become systemic, the same as if it were being taken orally, and he gave me an explanation that made sense but that I am now having trouble remembering well enough to articulate in print. I am going to ask him to repeat it so that I can write it down word for word when we have our next consultation (day after tomorrow). I am 99.9 percent sure that I will want to do this instead of taking a conventional systemic estrogen blocker.
I have NOT ruled out the possibility, however, of taking an alternative estrogen blocker made from an herbal concoction devised by Dr. George Wong in NYC. Wong has come up with a mix of herbs that has a similar effect to Arimidex but is much less toxic. It will have SOME side effects, but not nearly as bad as the conventional blockers. And Dr. Wong can also add herbs that will help to ameliorate the side effects. I spoke to him on the phone yesterday - he returned my call as soon as he got back from a trip to London - and I now see a trip to NYC looming on my horizon, for a two-hour appointment with Dr. Wong.
To anyone actually made it to the end of this post, "THAT'S ALL, FOLKS!" For now.
Tags: alternative breast cancer treatments, alternative healing, alternative health, Arimidex, breast cancer, breast cancer metastasis, breast cancer mets, lymph node dissection, mastectomy, Tamoxifen
Yep, still here, still healing from the surgery, still working, still making long to-do lists, still doing my best to refuse any cookie cutter, one-size-fits-all treatment plan, still avoiding any ride on the standard conveyor belt that carries most women through their conventional cancer treatment journeys.
Next up: Leaving the mastectomy behind in a cloud of dust, I must move on to dealing with the fact that the surgeon removed three of my lymph nodes during the mastectomy, and all three were cancerous. I already suspected that one or two were, but had been hoping for no more than that. The surgeon COULD have opted to just go ahead and take 15 or 20 more, to be "on the safe side" according to the prevailing belief that if you can somehow get out ALL cancerous lymph nodes, you will prevent any cancer from escaping into the rest of your body. This is a fallacy, though, despite the fact that it's a prevailing belief (note that I say "belief" not "proven fact.").
Women with breast cancer often end up with cancer in the rest of their body, even if no cancer ever showed up in their lymph nodes. Lymph nodes are NOT invincible gatekeepers that block all cancer from entering the rest of the body. It would be lovely if they were, but they aren't. This belief was debunked many years ago. Don't take my word for it. Look it up. The studies are there.
That said, this is still a complicated subject, and I need to do more research to try and understand how my particular case (with all its myriad, particular pathology details) is or isn't affected by my particular lymph nodes (with all their myriad, particular pathology details) at this particular juncture in time. All I can say with certainty is that there is no certainty about how to deal with positive nodes. If you take them out, it may or may not be therapeutic (depending on many particular details) -- and you are putting yourself at significant risk for side effects such as lymphadema and an impaired immune system. These are not small side effects. Lymphadema, for instance, can be horrific and there is no cure for it, only "management" that may not even begin to touch it.
Like it or not, removal of cancerous lymph nodes is often irrelevant once you HAVE them, because once you have them, chances are high that you already have mets (that is, that cancerous cells have already escaped into your body and are searching for new places to attach and grow). Therefore, you may be better off if you just skip any more useless attempts at regional "cure" and instead start ramping up the systemic treatments.
But what systemic treatments should you go for? That's not an easy question to answer with breast cancer, particularly if you are of the opinion that chemo and radiation are only very minimally helpful (if at all) and therefore may very well not be worth all the abominable side effects.
What do you do if you opt to forgo chemo and radiation? What options remain?
That's what I am gearing up to think about next. There ARE other options, but selecting the right ones (or at least the ones you hope will be right) is not a quick or easy process, nor is it a process that leads you into the embrace of a comforting pink-ribboned support network. Au contraire: you are mostly on your own. It is an isolating path, so isolating that some women resort to blogging about it in order to feel less alone. :-)
1. Waiting in the doctor's waiting room
2. Waiting in the hospital waiting room
3. Waiting for the test results
4. Waiting for recommendations re: what to do if the test results are positive
5. Waiting for the doctor to call you back
6. Waiting for the drainage tubes to be taken out
7. Waiting for the shower and hair-washing that you are not allowed to have until the drainage tubes come out
8. Waiting for the next scheduled pain pill
9. Waiting to be told what exercises to do for your arm
10. Waiting to be able to put clothes on over your head again
11. Waiting to be able to drive again
12. Waiting some more before looking at the wound that will soon be a scar. Merely a scar — a place where healing has taken place.