Too Easy

I should just get over myself.

Psyching myself up for weeks, file folders under my arm, crib-sheets of facts at my fingertips, ready to talk enzymatic pathways and hormone methylization, I sallied forth to do battle with Dr. DaSilva.

"So do you want to change to the aromatase inhibitor?" he asked, halfway through the checkup.

"No way!" I got ready to argue my case.

"Okay," he said cheerfully, writing in my chart. "We'll keep you on the tamoxifen for five years, no problem."

It's all good news. No lumps or bumps, no sign of recurrence, healthy Pam. I have graduated to check-ups every four months instead of every three, I got the meds I wanted, and there were no arguments. Chest scan, blood tests, bone scan and annual gyn in March. I'm a free woman until then.

Today is Thanksgiving, and I have so much to be thankful for!

Big Day in Medico-Land

Today's my big 2-year oncology check-up, followed by a session at Mr. Acupuncture's House of Blessed Relief.

I've got a list of meds I need new scripts for, a file folder full of genomic test results, and a stoic attitude. My goal is to stay on the tamoxifen (for better or worse) and hope that the five years on that drug will suit me better than switching to an aromatase inhibitor. I hope that my doctor will agree.

There is a trade-off when one decides to get involved in the decision-making of one's own health care. It means I have to take responsibility for the choices I make, knowing that I am not nearly as knowledgeable as my doctor, but also knowing that no one cares more about me and my care as I do. Ultimately, I have to live with the results of my decisions. Would I rather hand that over to the doctor, or make my own choice and accept the consequences, good or bad.

So much second-guessing goes on. If the cancer comes back, would it have happened if I had chosen the other medication? If it doesn't come back, is it because I chose to take one drug over another? Who's to say that taking this blasted estrogen blocker has had any real long-term effect on my individual survival (since all the studies are based on large-population statistical studies, like the one that says it's not cost-effective to give all women aged 40-50 routine mammograms, because it only saves a few lives)?

It boggles. In the end, I shrug my shoulders and move on. What else can I do?

BioChem 101

I had a long phone consult with Dr. Veltmann, the biochemist, in New Mexico yesterday. The results of my UEM test are in, and he spent about an hour explaining everything to me. My brain was seriously taxed, but I want to be well-versed before I see my oncologist, Dr. DaSilva, on November 11.

The bottom line (for those who have no desire for the long science story) is that my estrogen profile looks really, really good. All those pills (25 per day--GULP), have had the desired result. Estrogens are like cholesterol numbers--there are good guys and bad guys. My "bad" estrogens are being converted to the "good" protective estrogens at a more efficient rate. By comparing my test results of 2 years ago, when my bad guys were off the chart and my good guys were low and struggling to keep up, we can see that the Sam-E, DIM-PRO, and B-vitamins are facilitating the metabolism of bad to good. Almost all of my good estrogens are now at high levels and my bad ones at low levels.

Since my cancers were ER-positive, fueled by the bad estrogens, this is presumptively great news.

So here's how it works: The body produces Glucocorticoids, which are converted to Androgens.
The primary ones we are concerned with are DHEA which is converted from 17-OH-Pregnenolone to Androstenedione, and the Androstenedione that is converted directly from 17-OH-Progesterone. This is then converted to Estrone (E1) by the enzyme Aromatase.

The oncologist is talking about putting me on an Aromatase Inhibitor, which will disrupt this conversion, effectively wiping out all estrogen production in the body--the good guys along with the bad guys.

But that's not the whole story of estrogen. Estrone (E1) is converted back and forth to Estradiol (E2), (meaning that if the body has an excess of one, it converts some to the other, to keep the two in balance). But E1 also converts in a one-way direction to three other compounds, using the liver's Cytochrome p450 pathways. Two of these three E1 metabolites by themselves are bad guys, 16-alpha-OHE1 and 4-OHE1. The other, 2-OHE1, is a powerful anti-cancer protectant. But the two bad guys can also be converted to good guys: 16-alpha can be transformed to Estriol (E3) and 4-OHE can be changed to 4-MeOE1, if you don't have a mutation on the COMT gene. I have this mutation, a SNIP (single-nucleotide polymorphism) on the COMT and another one on the CYP 1B1 pathway from E1 to 4-OHE1 (which gets converted to the good 4-MeOE1). These mutations are probably what caused or contributed to my estrogens going crazy and fueling my cancers.

According to this latest test, I am close to where I need to be, except for production of E3 from 16-alpha. I have a little too much of bad 16-alpha, and a low level of good E3. The idea that my oncologist understands this biochemistry and will prescribe Estriol to a cancer patient is, shall we say, not bloody likely. So, Dr. Veltmann and I have decided to up my dose of Sam-E, to assist the COMT conversion pathway instead.

The bigger issue is the Aromatase Inhibitor that Dr. DaSilva has mentioned he wants to switch me to. This shuts off the conversion of Androstenedione to Estrone (E1), effectively robbing the body of all the good guys while shutting off all the bad guys. It also leads to a complete and dramatic menopause, more effectively than surgically removing the ovaries. This drug blocks all estrogen production, from all over the body--from fat cells, adrenal glands, etc. After superficially understanding the complicated biochemistry of this system, I fear this drug.

First, I find this explanation of good estrogens versus bad estrogens extremely plausible, given what we know about the delicate balance between LDL/HDL/Triglycerides in regulating cholesterol in the body. Hormonal systems are extremely complex, and I'm pretty sure being in balance is more important than just turning off the estrogen spigot.

Second, I am wimpishly afraid of even more dramatic menopausal symptoms. I'm barely tolerating the truly awful hot flashes, the loss of short-term memory, the insomnia, the night sweats, due to the tamoxifen now. Tamoxifen works in a different way--it sits on the estrogen receptor site of every cell in the body and blocks the entrance gate, but it doesn't interfere with the production or metabolism of estrogens throughout the body.

We are still awaiting the results of the full-month cycle spit test, but the results will be in before my appointment with Dr. DaSilva. Hopefully, I will be able to digest all this information enough to talk to him coherently, and convince him that I'd be better off staying on the tamoxifen.

Independence Day...of a sort

In anticipation of having the carpets cleaned on Wednesday, I started cleaning up the floor clutter this morning. I was booking right along, swamping out the canning jar collection, the piles of "to be filed," the heaps of clothes "to be mended," the books that never got home to the bookshelves, when I happened upon a great big compilation of what I like to call "My Breast Cancer Homework."

This was my life, for two whole years. Notebooks full of hospital-provided info, pamphlets on clinical trials, tumor classification flow charts, worksheets on radiation and chemotherapy side effects and remedies, articles ripped out of magazines, medical abstracts printed off the internet. In one giant leap of faith, I heaved the whole hearty mess of it into the trash.

The niggling voice of "what if you need it again?" was drowned out by the pragmatic realization that if I get cancer again, all of this past information will be either uselessly outdated or cheerfully thrust at me again. In a big binder with a pink ribbon on it, thanks so much.

For the moment, it felt great to throw it all out. Liberating, in fact. Nope. Don't need this anymore. Done.

And then tonight, I came across this gem: Rethinking the War on Cancer http://www.newsweek.com/id/157548/page/1

Seems as though 37 years of research hasn't done much except cure cancer in lab rats, mostly because the funding is going to "scientifically elegant" studies that tickle the NCI's curiosity, without showing much in terms of actual human patient benefits.

I certainly can't complain of the advances that I personally benefitted from. But it appears that this dovetails into the ACS's statement earlier this week that the scientists aren't really sure why cancer diagnoses are proliferating at a spectacularly alarming rate, and survival rates aren't increasing proportionally with the increases in early detection. This article explains some of that, and gives a window on why the research is striking out on preventing metastises, which is what kills most cancer patients. And focusing on treatment isn't working out that well, after all.

I have been supremely blessed in my treatment options, and for the moment, all's well. But these rogue cells are sneeky little buzzards. They mutate (that's what started the problem in the first place), and they adapt. For every treatment thrown at them, they seem to find a way around it. And so far, the scientific approaches haven't begun to understand the mechanisms of why good cells go bad.

The one sure thing that cancer taught me was that we all have an undetermined expiration date. This was of course true before I had cancer--it just took that experience to make me believe it. I am more determined than ever to enjoy and treasure the life I have, and make every moment count. We don't get to choose what happens to us. We only get to choose how to live with it.

Another Clean Bill of Health

Once again, Dr. DaSilva finds no evidence of anything but a healthy Pam. Whew!

It's hard to describe the nervousness of this constant vigilance against recurrence. I dread these three-month appointments, a deep anxiety thrumming in my brain on the drive over, and an over-reactive relief when he finds nothing untoward.

He talked about wanting to switch me to an aromatase inhibitor after two years on tamoxifen. I will have to do some research. I know that the combination of the two in studies has shown a slight increase in survival rates over tamoxifen alone, but the side effects include more significant bone loss (some of which I already have), and bone pain. It all comes down to risks versus benefits. I told him I would like to see what my bone density exam says about my osteopenia in March before making a decision on switching. He agreed.

And that was that. Now I have three more months to forget about my oncologist, and the fact that I have one.

No Pain, My Gain

I'm off this morning to Kingsport for another session with Mr. Acupuncture.

I CAN'T BELIEVE THIS IS WORKING!!!!

Over the past 6 days, my heretofore agonizing pain has been gradually fading into the distance. I had a completely pain-free day yesterday--no spasms, twitches or even a threat of a twinge.

I am amazed. I am chagrined. I may just have to put my carefully tended skepticism on a shelf to gather dust along with liberal politics, laissez-faire childrearing, and other discarded ideas of my past.

Pain Management Logistics

I think things are getting better on the pain front. Bill notices that I don't yell "Argggggg!" quite as often during the day, and I am sleeping better at night.

There are logistical problems though. The lidocaine patch can only be worn 12 hours in a 24-hour period. That means I have to time the application precisely, or set an alarm to wake myself in the middle of the night to take the patch off. So far, I've been putting the patch on at 9 pm, taking it off at 9 am. But several times I've awakened to find the patch stuck to my pajamas or my pillow, or runched up in a ball under my arm and doing me no good. Either there are adhesive issues, or I'm an active sleeper.

The Voltaran topical gel (anti-inflammatory, usually prescribed for arthritis), is a wonder of relief for the other 12 hours, but it has to be applied four times in a 12-hour period, and I have to wander around shirt-less for 10 minutes after each application. With the cold weather we've been having, that's a problem. And thank heavens I don't have to work somewhere serious--I can just imagine taking four 15-minute breaks a day, standing around the restroom, topless, waiting for the gel to dry.

I've tried doing the patch during the day and the gel at night, but then I don't get the full 4 applications of the anti-inflammatory in while I'm sleeping. I've tried the gel during the day and the patch at night, but this also entails washing and drying the tender area thoroughly so the patch will stick, instead of sliding off the skin that has had the gel on all day. And even then, that's not working all that well. Perhaps I should start showering at night and then try putting the patch on?

So, the medications seem to be working. It's just that trying to figure out how to run my life while doing all of this is a full-time job in itself.

Relief? Maybe...

I have been so lucky up until now, in my dealings with medical practices. For the most part, I've found competent and caring doctors and staff, everywhere I've been in the past 18 months of the medical carousel. Yesterday, however, was an interesting departure from the usual warm-and-fuzzy, overly solicitous, cancer and post-cancer caregivers I've encountered in the past.

It started with the reminder call from the office on Thursday. The girl rattled through the appointment date and time.

"Wait a minute," I said, "I thought my appointment was at 8:30."
"It's been changed to 9:30," she announced, airily. It was the first I had heard of a change.
"You need to bring all your medications, x-rays, CT or MRI scans and your paperwork. Be prepared to pay your co-pay."
"I have a detailed list of all my meds," I replied.
"Well, isn't that nice," she said sarcastically. "You still have to bring the actual bottles. If you don't bring them, your appointment will be cancelled and you'll be charged $25. Suit yourself." Click.

What a snippy receptionist!

Bill and I trekked out to Kingsport, dutifully lugging a basket of bottles and paperwork. The front office receptionist was smile-less. We waited 20 minutes in the outer office. We were escorted in to take my weight and blood pressure. I handed the nurse my med list and she declined to rummage through my bottles. We then sat in an examining room for another 40 minutes, listening to the staff laughing loudly and hysterically outside the door. I mean, these women were in paroxysms of mirth. Hyena-like guffaws. Snorting. It made us smile and want to open the door to ask "what's the joke?" We had to amuse ourselves by reading the deadly serious signs about medication refills and all the instances where prescriptions would not be given.

At 10:30, the nurse practitioner finally arrived. Her demeanor was professional and kind, although I found myself correcting her English occasionally (I need to STOP doing that, it's a bad reflex). My self-diagnosis of Post-traumatic Neuropathy is correct. And there are all sorts of medieval torture-like procedures to try to alleviate the pain. Steroid injections up under the ribs. Surgery to cauterize or freeze the offending nerves.

I decided to go with the least invasive option to start--lidocaine patches for 12 hours a day and an NSAID topical gel to reduce inflammation for the other 12 hours. I'll just try it and see if it calms everything down in there.

The checkout receptionist was just as clueless and grim as everyone else. I left in a huff.

Bill and I had a nice lunch, but the experience had unnerved me. We decided that contrary to what one might think--that a Pain Clinic might be more attuned to patient needs than other facilities--these people seemed almost contemptuous of their patients. Almost certainly, they must deal with a lot of drug-dependent patients. Perhaps their interaction with those patients affects their manners. (Bill also noted that there was a sign prohibiting firearms in the building--what's up with that?)

Or maybe I've just been spoiled by East Tennessee friendly chattiness and people in other facilities who have gone out of their way to make my medical experience pleasant and comfortable.

So now, armed with my patches and gel, I will hopefully get some relief from the pain. And hopefully, I won't have to deal with these people in any meaningful way in the future.

The "End"

Today is a milestone of sorts: the end of my bionic breast reconstruction. Of course, there never really is an ending to the whole experience, what with checks every three months, ongoing monitoring of my status, medication for at least the next 4 1/2 years, and the probable necessity of further encapsulotomies because of my overactive scar tissue. But if there is an end to them fussing with the cosmetic aftermath of my mastectomy, I guess today is the day.

Today, my bionics will be tattooed to look "normal." This is so weird to me, on so many levels, it just boggles. Like everything else in this Pam Soap Opera, it's just one more smack of the surreal.

Before I got the starring role in this particular drama, I'm absolutely sure I never thought about what actually happened to women who had breast cancer, mastectomies or reconstruction. It never occurred to me that breasts & nipples could be fashioned out of skin, muscle and silicone implants, and that tattoos would color the aureoles (interestingly, the same color, same texture, as one's lips). And yet here I am, a walking poster child to the miracles of modern plastic surgery.

It's fine, miraculous really, in the abstract; but who would really want to go there, given the choice? That is the point, of course--my choices were limited to reconstruction or no reconstruction, and I'm not sure I even gave the no reconstruction option any thought at all. I just assumed that I would have some kind of reconstruction, and this is what was available, this is what I got.

As in, "I had a double mastectomy and all I got was this lousy T-shirt (and what fills it)."

So, one foot in front of the other, I have just plodded along the whole process as an act of faith, trusting that the surgeon knew what step was next, and trusting that eventually this Brave New Bod would become less strange, less alien. I'm not there yet, not at all.

But I go, and I submit, because that is what is next. And maybe sometime in the future, it will be all right.

Rainy day napping...

My appointments went well this morning, but I came home and collapsed anyway, and spent the rest of the day dozing on the couch with Echo, who also slept.

Dr. Huddleston has scheduled my surgery for a week from Friday, an encapsulotomy to loosen the "Iron Maiden" feel, and correct the cosmetic cleavage defects from the original reconstruction. He says the surgery should take about an hour. MaryAnn will be my surrogate Mom for this procedure, and drive me over and back--thank you!

Dr. DaSilva offered Effexor to mitigate the hot flashes, night sweats and depression. For the moment, I want to avoid adding another medication to my profile. I don't want to get into the cycle of taking one drug, then another drug to treat the side effects of the first drug, then another to treat the side effects of the second, then another, etc. I've seen this happen way too often at the pharmacy, and told him I wanted to continue to monitor my reaction to the tamoxifen for another 3 months before considering more.

Tamoxifen Issues

I've been taking the tamoxifen, which has shown a 41% statistical improvement in preventing breast cancer recurrence, and I'm carefully monitoring my body for potential side effects, some of which can be profound: clots, stroke, endometrial or uterine cancer, and cataracts. The statistical benefits of taking it outweigh the statistical risks of the possible serious side effects, and my oncologist has recommended it, so I'm taking it.

I am careful to use the word "statistical," because no large-scale study can tell if tamoxifen will help me beat the cancer, or whether I will experience any of the problems associated with it. One encouraging bit of news came with the genomic testing, which showed that 2 of my 3 cytochrome P450 pathways used to metabolize the tamoxifen are functioning normally. I do have one "snip," a defect on 2C9, but 3A and 2D6 are fine. So the plan now is to take the drug, and be vigilant about any changes I experience.

I've noticed two new body-messages since starting the drug: I crave sweets constantly, (especially chocolate, of which I've never been fond, except in the week preceding my period), and the frequency of night sweats and daytime hot flashes is ramping up with a vengence.

I wake up each morning looking like I've spent the night in a sauna, hair damp and wild, pink limbs and blotchy face. I've also become very temperature-sensitive during the day, piling on layers one minute, then flinging them off in a panic as I perceive I am about to burst into spontaneous flames the next. I keep hoping that things will settle down and establish some pattern, but so far, whatever this estrogen-suppressor is doing, it's random and unpredictable.

The sweets thing is even harder--how do I follow the Prime Directive ("Don't gain weight!") and soothe the raging desire to consume every source of sugar in the house? I've tried eating an apple, letting one tiny, perfect chocolate chip melt in my mouth, and other intercessionary measures. I've resisted doing any baking at all, afraid that if I make a pan of brownies, I'll just wolf down the entire batch in one sitting. My days now are spent avoiding temptation, steeling myself against food, and downing big glasses of cold water as the sweat pours down my face.

Biochem for Dummies

Looking over my genomics profiles, I wish I had paid more attention in Biology 1, 2, and 3, thirty years ago. Even if I had, would I remember any of it? Probably not. I've been re-introducing myself to the basics of biochemistry this weekend, with a little success.

At least I now have the ability to decode most of the information into plain English, and then confirm it with secondary and tertiary sources on the Internet. It is fascinating, if somewhat disconcerting, to read about the damage I've done to my body in the course of living almost 55 years. Considering how much "fun" I've had in that context, I'm actually in pretty good shape.

These "snips" (single nucleotide polymorphisms), are not inherited--they are identified mutations of the gene mitosis codes, theoretically due to exposure to pollution, pesticides, solvents, drugs, carcinogenic substances, heavy metals, toxins (biological and chemical), and free radicals circulating in the body. Then there are the enzymes that detoxify all the bad substances in the body, and how efficiently they are working. I now have a pretty accurate picture of what went wrong and what might have triggered my cancer, and what is going on now with my heart, bones, hormones, liver, and gut. Whether or not interventions can be made to slow any problems or even improve my overall health is still supposition, but I'm willing to give it a try.

The good news is that whatever the effects are of improved nutrition, dietary supplements, exercise and other lifestyle factors, they can be objectively monitored and measured via traditional scientific methods. The prior genetic damage can't be undone, but perhaps further damage on other pairs can be avoided. The enzymatic efficiency can be quantified to see if it's getting better or worse. Levels of "good" estrogen and "bad" estrogen can be compared to this baseline measurement in six months to see if they are getting better or worse.

This approach pleases me. It gives me the feeling of doing something positive towards improving my own health (other than just vague imprecations to "eat more fish and vegetables"), and it can be objectively verified to be working or not by real data. I can keep my inate skepticism at bay with a program like this, at least until I see the results.

********

For those who have asked: GENESIS is an acronym for Genes, Environment, Nutrition, Exercise, Stress, Inflammation/Immunity, & Spirituality. See? That's pretty benign, not quite a "Dr. Evil" scenario is it?

Spitting in tubes and resulting conundrums...

For the past month, I've been waking up, rinsing my mouth and spitting 3 ml. of saliva into test tubes for estrogen levels testing. Today, I collected the last sample, and am waiting for DHL to come and pick up my frozen spit for transport to the lab.

My first results from the genomic tests taken in January were emailed to me yesterday. It's going to take me awhile to digest this 56-page report (with even more accompanying detailed attachments), and the biochemist who has coordinated all of this testing will be calling me tomorrow morning to help explain what it all means.

I have not mentioned this before, because it all sounds so strange to me. It's either incredibly exciting or terribly embarrassing to be part of this project called GENESIS, suggested by my insurance provider back in December. Genomic testing could be either the cutting-edge future or the stupid nonsense of alternative-medicine pseudoscience. I have been highly skeptical through the whole process, monumentally nonplussed, waiting to see what the results are before committing myself to a plan of action that either embraces this newest "technology," or propels me screaming back into the arms of traditional medicine.

There are problems with both approaches. I have discovered that the practice of medicine, and specifically the business of cancer, is based on large-scale, statistical studies of groups of patients. Survival rates, treatment protocols and oncologists' recommendations are all predicated on the supposition that an individual cancer victim can play the percentages like a gambler in Vegas and have a probability of beating the reaper, at least for the first five years.

But then there's this genetic marker thing out there too, slowly gaining acceptance in the traditional medical environment, as seen in the new Oncotype DX test that my oncologist ordered that statistically predicted that I was at low-risk for recurrence.

GENESIS takes it even a couple of steps further, by mapping specific genes and identifying SNPs (pronounced "snips," which stands for "single nucleotide polymorphisms)." Those SNPs are variations in the genetic code that occur only at certain places on your chromosomes, and everyone has them--it's what makes us different from each other. Some SNPs have no effect on our health, but others can predispose us to disease or influence our response to a specific food or drug. Or so goes the argument.

It certainly sounds reasonable, but on the other hand, it also sounds like B.S. to someone accustomed to traditional scientific methodology. The objective truth is most likely somewhere in the grey area between so-called personalized treatment and statistical group probabilities. No one really knows where genetic research will lead. Will this infancy of genomic predictive factors become the standard norm in coming years as more is discovered and confirmed, or be discarded on the heap of plausible ideas that just didn't prove out?

By agreeing to be part of this project and having the initial testing done, I have willingly put myself in the position of having to eventually choose between an unproven new idea and a flawed-but-accepted treatment regimen. Either path could either extend my life or kill me anyway. I recognized that this was the danger when I first decided to be part of it.

I kept thinking throughout the process that I wouldn't be forced to choose, that I could walk between the new and the old and find a happy medium that would maximize the best aspects of both approaches. But now, looking at my test results at first glance, I realize that it was inevitable that I would eventually have to make a decision that comes down to literally betting my own life.

I'll continue to gather more information as the process unfolds. But I am no longer confident that I can play the odds at the same time I am exploring supposedly new frontiers. I'm going to have to decide what I believe and what I will do to take responsibility for my own future health. And back up that belief and responsibility with my own life on the line.

But what other choice would I have made? The person I am demanded that I at least question the status quo, and challenge the accepted, normal path. The optimist in me, the rebel in me, the faith-in-the-future me made it impossible to turn away from a possible opportunity that the new way might be a better way.

It's almost worthy of a classic tale of character flaws and hubris (or more realistically, a sappy mini-series about good intentions gone bad). I have a small amount of time in which to decide, and in the end, only the passage of more time will determine if I chose well or poorly.

Busy Day, Scary Thoughts

I am running errands today. Fedex for sending boxes (Bill will load them in the car, the clerks will remove them from my car), and lunch with Melanie, and maybe even a short trip to the mall for some Christmas shopping time? I'll have to see what my energy level is after lunch.

Bill and Mom are on the mend, having made it to the "Hacking and Coughing Incessantly" stage. Bill will be leaving on Sunday to start his working life again, halfway around the globe.

I spent yesterday resting, and doing research on the Oncotype DX Breast Cancer Assay Test that Dr. DaSilva ordered. From there, I was able to link to reading monographs on chemotherapy drugs and side effects in medical journals. I am trying to get educated enough to eventually make a decision about my future treatment and also decide how I want to live the rest of my life with the "shadow" of breast cancer always in the background.

This is what we "bosom buddies" all think about, and rarely voice: "If it comes back..."

If it comes back, the options get more and more limited, your life becomes less your own and really all about the cancer, because now you know that this disease is what will kill you. From that point on, you go from treatment to treatment, trying everything, trying to eek out somewhat of a normal life, in between treatments. The drugs eventually stop working, you switch to other drugs, which also stop working. The only defense is to make the right decision at the point where I am, and hope for the best. And just how does one do that?

The temptation is to err on the side of overkill. Do everything, as aggressively as possible, even if it only means a 1 or 2 percent improvement in your statistical chances. The emotional side is that already, I want this to be over and done with! The objective truth is that no one can predict who will never have another problem (with or without further post-surgical treatment), and who will have a recurrence, despite the most aggressive chemo and/or hormonal regimen. The Oncotype DX test is very encouraging, because statistically, it appears to be able to predict just that--within a 5% margin of error, of course, because no one really knows. But it's all just numbers--they can't really tell YOU what is going to happen with YOU.

It occurs to me that every woman I know who is going through this or has gone through this, lives with this knowledge all the time. Friends who are on the far side (beyond 5 years, even 10 years) tell me that eventually, they forget about it, or at least don't think about it everyday. That's hard for me to imagine at this point, but I trust their experiences. What courage it must take to live like that, courage that I don't have right now. I'm just slogging through the process, doing what I'm told to do--getting stronger, keeping positive, trying to make the right choices, trying to live life normally without cancer suffusing EVERYTHING.

My niece, Bonnie said to me a few nights ago, "How come you're so brave, Auntie Pam?" I told her, "I don't feel brave at all. I'm just doing what I have to do because I really don't have any other choices." It's the truth. I'm just a passenger riding the bus to wherever it goes.

I suspect the hard part comes later, in the dead of night, when you have to live with the unthinkable thoughts trying to push their way into your head, and consciously make the effort to stuff them back down again, lest they turn your life into a constant worry over "what if it comes back?"

Encouraging News & a Better Mindset

Some days, I crank and vent. Yesterday was one of those days. Thanks to all who put up with it and realize that sometimes keeping a smiley face on ALL the time just doesn't cut it.

Today is better, not because of any remarkable improvement in my daily situation, but because once again, I am reminded of just how fortunate I am. My appointment with Dr. DaSilva went well. He is someone who will "partner" with me in my care, not just issue orders and expect me to follow them blindly. He is open to questions and concerns, and assures me that he enjoys patients who do their own research and participate actively in their own care. This relieves me.

He is also very encouraged by my particular cancer profile. He said that even if I walked away and never did another thing to treat this disease, I now have a 70-80% chance of non-recurrence. Naturally, we want to see if we can improve that percentage (it's all about the numbers, as I've discussed before), through what they call adjuvent treatment. Hormonal intervention (shutting down the estrogen & progesterone production in my body) can probably give me another 15% or more. And, as I suspected all along, chemotherapy is still in the future land of "maybe."

Dr. DaSilva has ordered a very new test--called Oncotype DX--which genetically maps 21 of my gene pairs and matches them to my specific disease profile. I am a candidate for this test because I am "early-stage, node-negative." The test is used as a "predictor" for estimating which types of chemotherapy would most likely increase my chances of survival, and which drugs would likely have little to no effect. He says that in the recent past, patients with my T1c/N0/Mx situation were all automatically treated with aggressive chemo as a precaution, but within the last 6 months or so, we have the ability to actually tailor the adjuvent therapies to the individual patient, using genetic mapping. I find this so amazing! I am truly grateful that if I had to have this awful disease, I had it now, when so many treatments and tests are just now becoming available (AND our insurance will pay for most of it too)!

He also assured me that I am doing just fine, but that I still need at least another 3 weeks to heal and become strong again. This is not an overnight process or a quick recovery of a week or two. It takes a full 8 weeks for my body to adjust and balance itself after such a major assault. So, crankiness aside, I need to just chill. I knew this, but it sure is nice to hear it from someone who knows what he's talking about. Plus, he looks a little like Antonio Banderas (without my glasses on), speaks 5 languages, and has a South American accent. Dreamy stuff for a middle-aged woman. Perhaps I can eventually practice my stumbling Spanish during our appointments?

So, today is a rest-and-recuperate day. Mom & Bill are still doing their cough-and-cold thing, I am still holding out for immunity. Chicken soup for everyone! Be assured we are all taking care of each other, and each day is a blessing not to be taken for granted. We are all working on getting better, a little bit at a time.

One More Step, Then Another, and Another...

I feel like a bad line in a war movie, you know, the one that goes something like "Come on you grunts, whatsa matter, you wanna live forever?" just before they go charging into a hopeless fight and certain doom. Well, yeah...I DO want that, thank you. I want to pack up my bags, tell everyone that it's been a slice, and go back to living the life I had before Sept. 7. Unfortunately, I don't get that option. Everything comes back to the fact that it will never be the same, that I don't get to have a "do over," and life starts up again, but from this point here on. No turning back, only re-inventing the future everyday from here on out.

The finality of the surgery is what got to me yesterday. Hearing my surgeon pronounce me "an excellent cosmetic result," made me wonder "And what planet are you on, doc?" Reading the long-awaited pathology report, my cancer distilled into two typed pages of techno-medico-speak. I've heard people talk about out-of-body experiences, but reading about former pieces of my body described as "fresh" tissue samples just made me a little queasy and sad. It's not me, (but it used to be), and the new me looks good for what it is, but it's still not me. I cringe.

Today, more poking and prodding, this time with the wacko plastics crew. I've decided that these people are the court jesters of the medical profession. (Bill says that he thinks that they just REALLY enjoy their work). To be fair, they get the unique position of making everything better. OK, it's not the same, but certainly what they do makes the most of what's left after the deadly serious oncology people get through with you. They do have more fun in this peculiar parallel "Universe of Cancer" that overlays what used to be normal life.

I've been living in this parallel universe for about 3 months now, and while it's been interesting, I'm homesick for the old world I knew. I keep looking for a worm-hole to take me back, but as all sci-fi fans know, the things that happen in the alternate world impact and influence events in the normal timeline. There is no going back, only the future you choose in the world you are forced to inhabit.

So, switch modes, back to positives, stop whining and push on. Stitches come out today! No more poking me and pulling and itching and scratching! I see a future that includes soothing lotions and chafe-resistant powders. They tell me it is good that I have so much skin sensitivity left after the surgery (as opposed to being completely numb), but the downside is that my skin feels like a constant rug-burn, like someone buffed me with 220-grit sandpaper. After the stitches go away, I can finally treat that and get some relief. My arm function and strength continue to improve and the collarbone aches and upper chest muscles are calming down too. All good.

The path report, other than being a little creepy to read, was right where I suspected it would be all along. I am thankfully a Stage Ic, on the right side of the cusp of Stages I-II. I have an appointment with an oncologist in Kingsport on Dec.10 to discuss what comes next. My histology was medium grade, medium mitosis, medium differentiation. My lymph nodes were all negative. My metastasis is X--unable to be determined. So for those of you who follow these things, I am a T1c, N0, MX. All pretty good news.

Dr. Brenin says that I am therefore a candidate for a new type of diagnostic post-surgical test called Oncotype DX. This is a test that looks at 21 different "snips" of genes (SNPs, which stand for single nucleotide polymorphisms) and is used as a more individual predictor of the chance of recurrence; also what types of chemo drugs are likely to be most effective and which ones are likely to not increase statistical chances of survival. This might be a way to better tailor a chemo regimen and assess risks versus benefits of specific chemo protocols.

Some side effects of chemo are well known and well publicized--the nausea and hair loss, for example. But the ones that scare me are the ones you don't hear about until you are forced to choose chemo or not chemo--things like neuropathy (which I already have a significant amount of from the spinal stenosis) and heart muscle damage. So much of medical treatments available now come down to a "quality of life" issue. Just how much are you willing to put up with to increase your chances of beating the cancer for good? Would I risk heart damage for a 2% increase in my chances? Probably not. For 15%? Maybe. Would I take a possible 25% chance of heart damage to gain a possible 54% decreased chance of recurrence? I have no idea right now, though I suspect these are the kind of choices I am going to have to make and live with (or not). This stuff (especially for someone who is not entirely comfortable with numbers anyway) is the real challenge of cancer.

In the beginning of this process, when I was still crying everyday, several times a day, I think I summed it up for Bill this way: "OK, so let me get this straight--they're going to surgically mutilate me, then they're going to poison me, then they're going to shut me down hormonally and then they're going to target my genes and zap those with manufactured antibodies, have I got that right????" It's truly unbelievable, isn't it? Kind of like trying to kill Rasputin--first they tried to poison him, then they shot him a bunch of times, then they tied him up and threw him in the Neva River, where he finally actually died of drowning. And yes, I feel like that some days.

But for whatever else it is, this is my life, and I still get to choose how to live it. I'm not being graceful about it, but I am trying to be grateful. It's not over, but some of the worst of it is over. It's not perfect, but it's what I've got, and I'm going to make the most of it.

Relapse & Recovering

I am starting to come off of a couple of really bad days. It seems now (after having been to my local doc in a panic yesterday) that I developed slight cases of both pleurisy (chest pain) from the hated (but now gone) drain tubes, and a case of something called c. difficile colitis, an intestinal bug related to long-term use of antibiotics (I've been taking them since the mastectomy on 11/2). The local doc (whom I just met for the first time yesterday) was very diligent in covering all his bases, ordering thousands of dollars worth of tests at the local hospital and requiring about a day of my time. He's going to be pissed, because I decided to give it one more night of wait-and-see before subjecting myself to the maw of modern medicine once again.

I went home and rested. I did a little research online. I think his instincts and preliminary diagnoses are correct, but that I have very, very mild cases of both and will heal on my own with a little time and care. I ate some yogurt. I drank water. I feel better this morning. I think I'll bag doing the tests, but I'll have to come up with an explanation for the doc today, or he'll classify me as difficult or a slacker. He'll know when the results don't come back from all the tests, and then it will be like being sent to the Principal's office. Such is the way of medical care practicing under the shadow of legal coercion these days.

It used to be that doctors weren't Gods, but maybe they worked hand-in-hand with Him? We went to the doctor, who told us what to do, we did it, and most times it worked, and sometimes it didn't. My childhood doctor was almost a family member--he knew more stuff than we did, but he told us when there wasn't anything more he could do and even cried when he did so. He was human, one of the super-humans, but still one of us. We knew he didn't know everything, that not everything was under his control, and we treasured his advice but didn't hold him totally responsible for everything that happened to us. No more.

Now we are expected to be "informed" patients, to be advocates for our own care, to participate in decisions (but acquiesce, eventually, to their superior judgement) and sue their pants off when they make a human lapse or mistake. Doctors have to cover every single possibility, order every available test, over-prescribe drugs or procedures, wonder if their patients understand even a tenth of what they are saying to them (or doing a tenth of what they recommend). It must be hell, and I surely could not live under all that pressure. So I waver. I appreciate the advice and the knowledge, but I'm just stubborn enough to reserve the right to take the information and reject the further exploration for the time being.

I also don't feel like spending money and time and energy I don't have, to satisfy a curiosity (Yes! He was right!) on conditions that given a little time and yogurt might just right themselves. I believe in the body's ability to adjust itself. Having x-rays and CT scans and more blood tests and probably more antibiotics isn't going to balance me at this point. If it gets worse, I will definitely haul myself down to the hospital and do it. But for the moment, I'll just wait and see. That gives me the illusion of control and because he ordered all these tests on the record (and I didn't do them), he has a legal out if things turn nasty. What a world!

Melanie, sainted friend, came over with her ice-chest after work last night, moved into my kitchen and cooked me dinner! I sat at the kitchen table in my nightgown, sipped water and watched her cook. The fettuccine was sublime, mild and comforting. I couldn't eat a lot of it, but it was just what I needed. Her mom's Butterscotch Meringue pie was heaven-on-a-plate. Again, just a taste for me, but it soothed. Bill & Ray were off at Home Depot in Kingsport, so Mel and I had a chance to visit and chat and laugh, just girlfriend stuff. I thanked her kindness by dozing off on the couch, but because she's my friend, she tiptoed out with a smile and a wave. What a wonderful evening with a wonderful generous friend!

So, better and better, bit by bit, day by day. I have to keep reminding myself that this is a long-term project, and I've only just begun (and then buck myself up from that depressing thought). There is a least another year of dealing with this stuff on a daily basis, and I've got to develop both mental and physical stamina for the long haul. As daughter Juli says, "You can't stay at DEFCON-5 indefinitely." There have to be some let-down times.

"Warrior" Thoughts

It has been somewhat odd and disconnected for me to be focused these past 2 weeks on "reconstruction" surgery versus "cancer-removing" surgery. I see now that having the reconstruction done immediately effectively lessened the impact of the "OMG, I've got Cancer!" response, and gave me something to hone in on besides the gut-clenching, disease-fearing part.

In a way, I feel as though I might have bypassed something important here, a lesson to be learned or a character-building moment I will never retrieve? I've been temporarily distracted from the Breast Cancer-Fighting Mindset to focus on the Breast Rebuilding-Healing Mindset. Many women, in fact, choose to postpone the rebuilding phase until after the full treatment regimen, so as to put all their energy into ridding themselves of the disease before moving on. Did I unwittingly shortstop that process? Will I be able to garner my mental and physical resources again for the continuing issue of fighting the cancer that may or may not still be lurking after the surgical treatment? I'm not sure about my answers to those questions yet.

Part of it was an observation by my friend Jayne about the generational differences in the perception of what a diagnosis of cancer means. She said that when she told her mother and her sisters about her breast cancer, they all cried. When she told her nieces and nephews, they said casually "Oh, good! At least you have something that is treatable." The difference is that in one generation, cancer has gone from being an automatic death sentence to a treatable condition, and our gut reactions are based on how old we are. I am old enough to remember a childhood friend dying from leukemia--yet, I am also the aunt of an ALL survivor, my niece Bonnie. With Jayne's recognition of this generation gap, I started thinking as my own children do about my disease. As daughter Juli said, "At least it's something they can remove, like breasts--it's not something you really need like a liver or a brain!" Sure they were scared of the potentially fatal possibilities, but they mostly were relieved when the initial shock and fear passed. I came to this place as well, through their reactions.

I do know that the visceral impact of the anticipated mastectomy (complete with actual photos, thanks to the internet) may have made me more amenable to the immediate reconstruction option when it was offered to me. When I first viewed photos of what the mastectomy would look like and what reconstruction would look like, I was equally traumatized by what I perceived my old familiar body would become. How could it be that these women were smiling in their photos? An automatic camera-say-cheese response? How could they look happy about what their bodies looked like in an objective sense?

And strangely, I have come around to that mental shift as well. I am completely delighted so far by the aesthetic outcome (while I still recognize that objectively, looking like a nipple-less Barbie doll with Corpse Bride patchwork stitches isn't really the photogenic ideal)! I look down my shirt or in the mirror, and I do smile. I have been hardly consumed at all by the cancer-disease-did-they-get-it-all? details, and more focused on can-we-proceed-with-reconstruction? details, leapfrogging ahead to the end before it's really over. There is a great temptation to breathe a premature sigh of relief and pronounce myself "cured," before having done the next hard thing (and the next, and the next).

And the more I read about the next phases, I realize that I'm going to have to gear up again, gather up some more grit, because this stuff never really ends, it never goes away. Fortunately, I don't have to make any huge decisions yet, because we are (unbelievably) still waiting for the darned pathology report from a California lab now. My removed parts were "sent out" for further study, because the initial dissections showed three different kinds of breast cancer, two in each breast. How's that for complicated?

For now, we can assume that for all intents and purposes, my breast cancer has been removed by the surgery. But here's the kicker that wakes me up occasionally--I also have to suppose that whatever conditions existed in my body that led to what I would have to call the "explosive" generation of multiple types of cancer all at once--those conditions still presumably exist inside me. So I'm thinking that there is probably something else going on in my formerly trusted human ecosystem that needs to be dealt with on a microscopic basis with chemo and hormonal and gene therapy, and I hope that one or all will work to correct those conditions.

It could indeed be that all the cancer is gone now, that there isn't a cancerous or pre-cancerous cell left in my body. But I don't think it's likely. Can I go on blithely without further treatment, even if the protocols said that my particular cancer profile statistically usually survives at least 5 years without anything more being done after surgery? I'm not sure I could sleep peacefully at night ever again--I'd always be waiting for either the breast cancer to recur or some other cancer to pop up. Other than the offending tissues being gone, all the same conditions are still in place that gave rise to the cancers in my breasts. Who's to say that it won't happen again, and in something I do need, like a liver or a brain?

So I guess that it's good that I've had something else to focus on besides all the scary stuff still to come. It's good that I too am smiling at my less-than-perfect and perfectly-wonderful new bionic boobs (though don't hold your breath looking for my pix on the internet)!

I do have some time to shop for an oncologist and do some research on what is known (more than in the past) and what is unknown (less than in the future). I realize again that this is going to be a salient feature of my life from now on, despite my desire to just fix it and move on. I'm beginning now to see why people who have been through this call themselves survivors and not victors, because you're never really sure if you're victorious--maybe when you die of something else? None of us gets to live forever, so maybe that's the goal?

But still, the verbiage irks me. I want a less passive word than "survivor." Dr. Jo suggested "warrior," and for now that's what I feel like, and feel like using.

Reconstruction Done!

In to surgery at 3:30, woke up around 5:15, was at the All-You-Can-Eat Wood Grill Buffet by 6:15, pigging out at the salad bar and telling the roast beef carver "more, more!" Sometimes I don't even believe myself.

Not only do I look and feel "fahbulous, dahling!" tonight, but they also gave me a little card with my implant serial numbers on it. I apparently now belong to the Bionic Boobs Club, and this is my secret membership decoder card. The despised tubes are gone, I'm wrapped in elastic like a breast-bound Flapper Girl from the 1920s, and I'm thinking I might even have the luxury of sleeping on my side tonight (with propping pillows, of course). Wow, it is so great to be done with this part.

I get to shower in 4 days (Sunday), then need to be back here on Tuesday, Nov. 27 for stitches removal. I will also try to bundle my final appointments with Dr. Brenin's crew for that day too, maybe an oncologist consult as well. Much research to do in the meantime, and we're still trying for a copy of that path report too.

Home to Tennessee tomorrow, and on to continued recovery.

Good Dreamless Sleep

Cold, gray, rainy, gloomy, misty drive yesterday. I slept almost all the way in little bits and pieces of about 20-30 miles per nap. For awhile, Bill was playing our Spanish lesson CDs, and I'd wake up, respond to something in Spanish, and go right back to sleep! We were both pretty cranky, sore and tired when we got in around 6.

We watched a very funny movie called Free Enterprise after a pickup dinner of cold cuts, salads and snacks. For old sci-fi fans, this movie is a hoot, featuring every geek you knew in high school & college, plus William Shatner playing himself as producer of a 6-hour musical version of Shakespeare's Julius Caesar. We laughed so hard that the dogs and the parrot became aggitated.

I slept straight through until about 5, and was able to have my one cup of black coffee before 6 am. I think this is so amazingly wonderful--if your surgery is in the afternoon, they now let you have your morning coffee!

This afternoon, we go to a new facility, the Outpatient Surgery Clinic, rather than the big University Hospital--I might even see someone new for a change.

For now, I think I'll go back to bed and snooze some more. We have nothing that needs to be done other than walk the dog this morning, and show up for more surgery at 1:40 PM. I can't wait to be done with these tubes and "temps."