Clang! Clang! Clang!

My head is not exploding. Not anymore.

For weeks, perhaps months it seemed as if my head was exploding. And when my head wasn’t, my heart was.

I realize now that I treated things rather blithely in my last blog entry (October 24, 2009). I guess that’s just the way I was feeling that day. It was a rarity then and that light frame of mind was not to return for many weeks to come. I am only just now returning to some level of sanity. This cancer thing has been kicking my ass.

Shortly after I wrote that brief (for me) entry, I got a call from my surgeon. I was sitting behind the wheel of the car. Diane and I had stopped to pick up our mail at the “mail station” in our apartment complex when my cell phone whistled. Like so many people, I have a pretty silly ring tone; it sounds like Slim Whitman whistling a cowboy song. It's true, my phone whistles a tune.

It wasn’t the ring tone that was memorable however. I had been waiting for weeks for this call. I’d been at the cancer center earlier that very day for a different appointment and had stopped in and Dr. Brenin office where he had promised to call me as soon as he had the pathology report back. He was expecting the report late that day and sure enough, my caller i.d. indicated it was indeed Brenin’s office whistling me up. It was Dr. Brenin himself. He didn’t mince any words, he never does. The report wasn’t good. The sample was not “clean.” In fact the words that he used were, “non-invasive carcinoma and other abnormalities are pervasive throughout the sample.”

CLANG! CLANG! CLANG! It was hard to hear anything beyond that. "Pervasive." "Throughout the sample" he'd said.

Three relatively minor surgeries. Each one uncovering more invasive or non-invasive carcinoma. Brenin reeled me in for a minute by reminding me that what they found this time was NON-invasive carcinoma. Diane was staring at me; I was shaking my head. I give her the thumbs down sign. I finally find my voice and ask Dr. Brenin, “What does this mean? What are you recommending?” He pulls no punches, minces no words: “A full mastectomy.” I am struck dumb. A fleet few seconds feels like a lifetime before I can clear my throat. When I do so, I sound very reasonable and calm. I am not. My heart is in my throat. I remind Dr. Brenin that I already have an appointment to see him in two days time and we can discuss all of this in greater detail then. He agrees and reminds me there is no particular urgency but that we should make some decisions. It is he that has to remind me that I have to “get on with my life” that I need to “put this behind me.” I calmly agree. I am the last person who wants this medical misadventure to drag on any longer than it already has. I hang up the phone and the tears quickly spill over. I relay Dr. Brenin’s words to Diane and I just can’t stop it, I am sobbing now, head resting on the steering wheel. Diane is crying too and trying to find a way to comfort me and needing to be comforted herself. I am no help. We just cry for a little while and we hold on to each other. I am soon cried out and need a Kleenex. We drive up the hill and trudge the stairs to our apartment. I’m going to have to tell my family and friends but I can’t do it yet. I can’t even think about it.

Two days later I am in Dr. Brenin’s consulting room. I sit on the edge of the low examination table and he on the little round stool that rolls toward me. He shares with me in detail that the tissue sample has “a little bit of everything” – interductal hyperplasia (abnormally forming and dividing cells), Ductal Carcinoma In Situ (DCIS) – cancer that has not yet invaded the tissue outside the ducts – Lobular carcinoma in situ,– like DCIS, cancerous but not yet malignant, all tissue that may presage malignancy but that I don’t yet have malignant lesions in this area. And they may NEVER become malignant. But we already know that similar tissue in the same area did become malignant (removed in the first lumpectomy back in July). Thus the likelihood that any of this abnormal, precancerous or non-invasive carcinoma tissue will become malignant is predictably high. Will it definitely become invasive carcinoma? There’s no way to tell. Is there anyway to avoid it? Yes. Mastectomy.

CLANG! CLANG! CLANG! CLANG! Complete removal of all of the breast tissue. That's what we're talking about.

“Now wait a minute….. we’re just talking about what’s going on in my left breast right?”

“That’s right” nods Dr. Brenin.

“But what about the right side? Right now, we only know about what’s going on in the left side and that's thanks to the lab work - at a cellular level… because of pathology reports. There's not anything we can see on a mammogram or an MRI or in any other way. How do we know what’s going on in the right side?” I all but stammer..

“That's right. We don’t, we can’t.” agrees Brenin.

CLANG! CLANG! CLANG! CLANG! getting louder in my head....

“Do I need to consider having a double mastectomy?”

“Well, I’m generally not a proponent of prophylactic mastectomy. We don’t recommend removing a healthy breast. It’s very difficult recovery and often an unnecessary risk for no good reason” Brenin frowns.

"But how do we know it’s ‘healthy?’ “ says I. My heart is racing.

Brenin flips open the chart and takes a closer look. “We talked about genetic testing?” We did. “Oh yes, I remember, your mother had breast cancer, and your father’s an Ashkenazi Jew.”

CLANG! CLANG! CLANG!

Why is there so much noise inside my head? Why can’t I think clearly? What? What possible difference can my religion make? (and for chrissakes I'm not even Jewish in that sense!)

Apparently, it makes quite a lot of difference. It’s nothing to do with belief, it’s all about genetics. Just as African Americans are more likely to carry a genetic marker for Sickle Cell Anemia, Ashkenazi (Eastern European) Jews are more likely to carry a genetic marker making us more susceptible to breast cancer. There are two markers actually BRAC-1 and BRAC-2. Oh great. ANOTHER designer gene I’m likely to have inherited! I got the queer gene, the alcoholic gene, the bi-polar gene, the diabetic gene… okay well I also got the smart genes and the tall genes and the good looking genes. But now you tell me there’s a Jewish gene for breast cancer? Oh for the love of god. Why didn’t we stay in Egypt and assimilate when we had the chance ??

Ten minutes later I am cloistered with the Genetic Counselor getting a refresher course in the science of Mendel’s genetic theories (he of the pea plants) and having my family’s cancer history diagramed on a family tree. My father’s side is pretty truncated as - apart from my father who had an angio-sarcoma excised last year - we only know about my grandmother, her brother and a half brother. The rest of his once large family – including my father’s father and sister - died in the Holocaust years before any kind of cancer might have felled them. Ah well, there you have it! See? Cancer treatment – not so bad after all compared to death by Holocaust is it?

Based on my risk factors and genetic history (or lack thereof in Dad’s case) I qualify for genetic testing as a means of finding out what the risk of developing breast cancer in my RIGHT breast might be.

There is no question - or so my mind keeps reminding me at full volume night and day - “They are going to cut that left one off! They are going to cut it off! Cut it off!

But now there is the question, what of the other side? The genetic testing is to help decide the wisdom of removing both at the same time – one because of what we already know, and one because of what we are able to predict and therefore take pre-emptive action. My mind is completely frozen and fixated on that horror. And so another little vial of blood off to some lab that I will never see to have my genes analyzed. More weeks of waiting.

Waiting. Always the waiting. My mind continues to go clang! clang! clang! Day and night for weeks.

Two weeks later and finally some good news: no genetic marker. Does it mean that I will never develop cancer in the other side? No of course not. It just means the risk is lower. It’s all a game of roullette you see.

Did you know that treating cancer was a gambler’s game?

I took a calculated risk at the beginning of this process that the first lumpectomy would be enough – would “get it all” so to speak. It didn’t. I took another chance that the second excision (another lumpectomy essentially) would do the trick. It too failed. In between we had the scare about chemotherapy – told that the adjuvant risk was high – a one in four chance of cancer occurring elsewhere in my body and chemotherapy inevitable to reduce that risk. Instead I gambled on a special molecular level test to determine my individual chance of recurrence and from that I am told this risk is in fact low. More recently, in October I was told to bet one more time on yet a third excision in the hope of getting a clear bill but that too was not to pan out. The house appears to be winning. Let us hope my losing streak is over.

In this round I am gambling on the genetic testing and opting to have only one breast removed. Only one.

clang! clang! clang!

Ah but the fun has only just begun. Now we have to determine what happens after they lop that puppy off. I had casually thrown out that I would opt for reconstruction on my visit to Dr. Brenin and he had equally casually thrown out the term “TRAM flap reconstruction.” I had no idea what that meant but boy howdy was I about to get an education.

It turns out there are several options for “reconstruction” – including one that I never considered: no reconstruction at all. I cannot even begin to explain why I never considered NO reconstruction. I just didn’t.

I think I’m not going to describe the choices and procedures here. None of them are pleasant. If you’re really interested in the details, you may wish to google “muscle sparing TRAM flap.” That’s what I’m having done. What I will describe is the process of figuring it out.

While waiting for the genetic test results, Dr. Brenin referred me to a plastic surgeon to talk about the reconstruction. Both the mastectomy and reconstruction can (and in my case, will) be done at the same time. Or at least the major part of the reconstruction.

The plastic surgeon I went to pissed me off right out of the gate by keeping me waiting for over an hour. That is no way to treat a patient. Especially one whose head is exploding anew with every passing day. I spent another 45 minutes with a resident who explained everything I wasn’t interested in - I’d already done quite a lot of reading about TRAM flaps and implants on my own. Then I put up with another :30 minutes of being “measured” by a dizzy nurse – who by her own admission had been forced to retire except for this dubious assignment that she did as a “volunteer.” Her job was to try to “size” me for implants, which I’d already determined I did not think I wanted to have. Her method of “sizing” involved cocking her head sidewise and casting a critical glance at my chest (with which she was about eye level) then grabbing a handful (of me) and trying to compare that to another handful of silicone implant. Then she asked my thoughts on the matter, handing me the silicone-filled sac. I thought it was too large. She went for a smaller one and for fifteen minutes kept getting her silicone implant sizes confused. In the end, she wrote down the wrong one (after she, myself and the resident all agreed I was a 550 cc silicone implant candidate, she wrote down 650 cc – I simply sighed and ignored it as I had no plans to have that done anyway).

Then the cocky, loudmouthed little surgeon himself swanned in. He listened to not one word I said and - like the others - assumed I would be having implants. Surgeon – having himself decided what he wanted to do - called Brenin’s office to coordinate schedules and come up with a surgery date. Then they all left me alone with a basket of still jiggling silicone gel to wait for someone to photograph me. They never explained the purpose of taking the photographs, but it was somehow very degrading – like having mug shots taken of your bare breasts. “Turn to the side… face to the right…. now to the left, straight ahead now please.”

I left there mad, confused and somehow believing I should have implants done. The surgeons’ schedules fully synced and an operating room reserved such that I was scheduled for surgery on December 22^nd.

I should say that there’s nothing wrong with implants. Many women opt for them and are very happy with the results. It’s just that I felt the drawbacks outweighed the purported simplicity of the surgery (compared to the TRAM flap reconstruction). Implants have to be replaced every 10-15 years. They can be damaged (say in a car accident); if I gain or lose weight, the implants will not change - though the other side will. Most of all, I did not like the sound of “expanders” for weeks and weeks followed with going back for placement of the final “implants” – another major surgery. I also thought that at my age (nearly 50) it is unnatural to turn up suddenly and permanently “perky” as implants would make me. A little applied gravity can be a good thing when aging gracefully. And if only doing one side, it would leave me quite “asymmetrical.” (at that time I did not yet know if I was doing one or both). Most of all, I did not appreciate the fact that I had not been consulted in my own treatment. I was confused, and though I didn’t realize it right away, angry and frightened.

(N.B. Even with reconstruction, because I will, by default, lose some skin during the mastectomy, I will get a “natural” lift. Fortunately, the law requires that my insurance pay for reconstruction AND requires that it must also pay for them to do whatever is necessary to make me symmetrical (much harder with a single implant) So I will, once the swelling goes down and things “settle” into their natural position, get a later lift on the right to match the newly lifted left. Also, the “reconstruction” material will come from another part of my anatomy and without getting into all the gory details, let me just say that there is a silver lining in this very cloudy picture: an ever so slight “tummy tuck” that will come with the package)

Thank goodness UVA gave me other resources. One of them is a book. A really good book that has provided me with so much of the “technical” information I’ve needed to understand this whole process. It has surprised me to find out that apparently many patients are not interested in the “technical” details of their cancer or treatment(s) and do not wish to take part in educating themselves or making decisions about their treatment. Instead, many of them simply accept what their doctors tell them to do. I find that simply shocking. In my view, knowing more rather than less about cancer and the treatment I can expect relieves fear and anxiety and has helped me make better decisions by helping me to ask better questions. Teaching myself the vocabulary of cancer and its treatments allows me to understand my medical providers, to decipher their mumbo jumbo and to pick apart the answers they give to my sometimes very simple questions. It is after all, my body. One of the best resources they gave me is a 2 inch thick tome by a breast cancer specialist and surgeon, entitled Dr. Susan Love’s Breast Book.” I have gone back to it again and again through this nightmare summer and fall. The other is a book called, The Breast Reconstruction Guidebook by Kathy Steligo. Both have been indispensable and if you know someone that is going through this process, I strongly recommend both.

At this stage Steligo was truly a gold mine because she dealt not only with the technicalities of the procedures but – oh you know – those messy things called FEELINGS.

Clang! clang! clang! Are you listening!? they are going to cut the damn things off! You can’t be serious! Cut them off?

Um, yeah. Feelings, gotta’ deal with ‘em.

Steligo was right on the money. She said one important thing that leapt off the page at me. She writes that if you have any doubts, to seek a second opinion. And goddamn did I have doubts! After days and sleepless nights agonizing over this, I finally aired my concerns with Dr. Brenin’s nurse practioner. I guessed that the surgeons’ nurses would surely know the scoop on each of the surgeons. I was right. Without casting aspersions on the plastic surgeon whom I had already seen (except for a long drawn out sigh and a comment to the effect – “well, it’s not the first time we’ve had people ask for the name of another surgeon.”) She immediately gave me the name of second plastic surgeon and I promptly called for an appointment with him.

Little did I know that both plastic surgeons practiced out of the same clinic at U.Va. and shared a pool of residents and support staff. Awwwwkward! But I stuck to my guns. I felt immediately more at ease when his secretary asked to make the appointment the last one of the day because “Dr. Drake likes to spend extra time with his cancer patients so he can discuss all the options and what to expect.” To my relief, Dr. Drake, showed up righ on time, sat down in no hurry, graciously and indeed thoroughly, answered all my questions and concerns. He shared an album of his previous handiwork – the good, the not so good and the downright ugly - discussing each of the various reconstructive options. In detail. He even drew diagrams – one of them ON me - and reviewed the various advantages and risks. Then he quietly rose, shook my hand and politely wished me luck.

Clang! Clang! Clang! The loud voice in my head: NO! Wait! Aren’t you going to do it Dr. Drake??

That’s apparently not how it works. A second opinion is just that, an opinion. A consult. A chance to ask more questions. If you want the second surgeon to actually do the procedure, you have to explicitly ask them to do it - aloud. In your head doesn't count. I didn’t know that and found myself going down the elevator not sure what was supposed to happen next.

Clang! clang! clang! oy! the noise in my head these days….

With all the “homework” that I do why is there so very much that I do not understand about this process?

I DO know some things. I know what kind of procedure I want to have and that I am an eligible candidate for it. And I know that I want Dr. Drake, not the first plastic surgeon, to do it.What I don’t know is how I get Drake on the team. Is he available on the day Brenin and I have scheduled? What do I do next?

It took me another half day of confusion and uncertainty and then I did what I always do when I really need a straight answer and to get something done. I called Drake’s secretary.

Take it from me. Want something done? Call a secretary. You can label them whatever you like: administrative assistant, executive assistant, secretary, assistant, clerk, even the humble receptionist or even frickin’ “Girl Friday” I don’t care – they are all the same. They run the world. And they can save your ass. They know everything and everyone. The manage calendars. They know where the skeletons are buried, and the keys are hidden. They have all the phone numbers, they know the OTHER assistants. They get it done – whatever “it” may be.

Carla, Dr. Drake’s assistant, is one of these. She knew exactly why I was calling and made it easy. I said that I wanted to see if Dr. Drake was available to do my procedure and she said that I shouldn’t worry anymore about it. She assured me it happens all the time, the surgeons are used to it, but they won’t “poach” from each other until the patient explicitly says they want a different doctor. All I had to do was say I wanted Drake. I for sure did. She said that was fine. She would cancel all the upcoming appointments with the previous plastics guy, sync Drake and Brenin’s schedules, call them both and let them know about the change, reserve the operating theater and call me back with the details. And she did it all.

One more visit to Drake’s office to sign the consent forms and get the once over from one of Drake's residents and to confirm with Drake which procedure I wanted done and we’re on.

Yes we are on. December 23^rd at University of Virginia Medical Center. I will have a single, radical mastectomy and undergo the major portion of reconstructive surgery at the same time. I have been told I am the only surgery scheduled on that day and will be on the table anywhere from 5-7 hours and in recovery for another one to two hours after that. I expect, since the surgery is very long and rather invasive (there’s a lot of micro-surgery required to re-connect blood supply for the reconstruction) that I will not be up to talking to anyone on the phone for at least a day or more. I will be an inpatient for anywhere from 5-7 days then more or less off my feet at home for another 1 to 2 weeks. After that, I’ll be on restricted activity (no lifting etc.) for another 4-6 weeks.

Yes, it means I will be in the hospital Christmas Eve and Christmas day. Most of you already know that I don’t celebrate Christmas so that is not a concern. Harder on Diane than me really.

I will probably have a laptop at the hospital so after a day or two of dopiness, I hope to be up on FB, email etc. pretty quickly. If you want to call, I would call patient information to see if I’m able to take calls first. Information about contacting U.Va Medical Center can be found here:

http://www.healthsystem.virginia.edu/toplevel/why-choose/overview/phoneadd.cfm

Since first hearing the word “cancer” back in June I’ve been on what seems to be a never ending emotional roller coaster with at least two full blown freak outs. More recently -for weeks and weeks now - my head has been exploding. From the moment Dr. Brenin first uttered the dreaded phrase, “full mastectomy,” and while researching exactly what it means – looking at the photographs and diagrams and considering the means of reconstruction and what that entails - until just a week or so ago - I have been on a crazy nightmare of uncertainty, dread, fear of the surgical process, scarring, pain, the damage to my body image (such as it is) the long recovery process and god knows what. The waiting, as always, has been excruciating. I still have a week to go. But I’m starting to calm down. I know what’s coming, I know what to expect. I trust my treatment team – all of them.

Nevertheless, I admit it, I am afraid. But I’m not afraid to ask for your help. Your thoughts, prayers, and positive healing energy. Its almost over. I have a few more things to get through then I hope to be able to get back to concentrating on castigating you on topics of politics, foreign policy, health care, torture, war, climate change, the economy, - you know – all the things that don’t seem to matter quite so much right now. Well, for a little bit longer anyway. Don’t you worry! I’ll come up swinging very soon.

Stay with me folks. I need you.

Slightly Uneven Heffalump and shorter answers

For those of you who read the painfully long and detailed "Unknown unknowns" post below (oy vey, what a drama queen I am!) ... this is a relatively quick update.

The onco-tests came back with surprisingly low risk factors for recurrence so in fact chemo therapy is not now a part of my current treatment plan. And I will not be filling my wardrobe with a bunch of new hats, scarves and turbans, nor investing in eyebrow pencils this year. Whew!

I did have a third excision (essentially, a third lumpectomy at the same site). Had it done just this past Thursday (today is Saturday) and I am still taking it easy today and a little loopy with Vicodin.

This time things were a little more painful, I'm not entirely sure why except that they keep going through the same location so they are cutting through already "scarred" and thickened tissue. Also, Mr. Dr. Brenin (my UVA surgeon) told Diane (I was still zonked ) that he took a little more tissue and did some "reconstructing" as a result. In the past, I think the little "dimple" that was created by this procedure was probably only noticeable to my own hyper critical eye. I don't know about this one as it is still under cover of a large gauze bandage. Maybe I'll post photos and y'all can tell me what you think? Yeah. NOT!!!!

Stay tuned. Hopefully I'll be able to change the subject soon to some other tale of woe.

More known and unknown unknowns

First, some good news…

First, I found a job. It’s a “temp” job. Meaning, it’s through an agency doing contract legal work for a large firm in Richmond. It will likely be a 3-4 month project and I start next Tuesday (after Labor Day). It’s a start, and a foot in the door.

Secondly, I’ve decided to take the Virginia bar exam next February, which means re-taking the MPRE (ethics portion) and the MBE (multi-state portion) both of which I already passed with flying colors back in Massachusetts four years ago. Good news. I guess. Aggravating? Yes? A poor use of my time (and money) by the Virginia bar? Absolutely. But so be it. The ethics part is in early November so I’ll be doing a “warm up” over the next couple of months.

Thirdly and also in the category of good news is that Diane found a job too. She’s starting in a part-time capacity (24 hours/week) but will gradually move to full time by November or there abouts. Best of all, she will be working in her field (hospice). Her new employer is a recently established hospice agency so they are currently hiring her only part time because they’re in the process of building a client base. Their base has a way of dying off, then expanding, dying off and expanding – so it takes awhile to really grow. She’s very happy with the pay and people and starts next Wednesday.

So that was good news. What is the NOT good news?

Well, it’s not that it’s not good news. It’s more complicated than simple good or bad. Okay, it’s not very good either.

Bear with me while I try to simplify things. I feel a little like Donald Rumsfeld. (I hear your collective heads exploding and exclamations of “Good God Doris! That IS complicated! And very bad news. How did THAT happen?”)

Calm down. Let me explain.

Remember this infamous Rumsfeldian moment?

"Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns -- the ones we don't know we don't know."

Of course you remember it. I was going to say that I understand that statement now but really – he is an idiot isn’t he?

In fact I do now understand the notion of known unknowns and unknown unknowns as it applies to my current health situation. Let’s back up a bit.

In June, I didn’t know that there were unknown, unknowns. But I found out. I found out I had breast cancer and that unknown unknown became known. This is more trouble than its worth isn’t it? so was Rumsfeld.

Anyway, when an event like this happens, a whole new world of “unknowns” appears. A treatment team – surgeons, medical oncologists, oncology radiologists, social workers, nurse practitioners, and more - present a bunch of information, statistics, options, proposed treatment plans. Choices have to be made, none of them easy. Your team tells you all about “probable” outcomes. Side effects. Downsides. Upsides. Possible consequences. Risks. Studies. Clinical trials. Ongoing research.

We put together a treatment plan, me and my team, and embarked upon our little journey through unknowns. Then there comes a series of waiting. Waiting for appointments. Waiting for test and imaging results. Waiting for surgery. Waiting for the pathology results. Waiting to heal. Hoping to go on to the next stage of your plan.

Well things don’t always go according to plan. This was my plan:
1) Have a lumpectomy attempting to remove– lump(s); CHECK!
2) Check the closest lymph node to see if it had any malignancies; CHECK
3) If it doesn’t, go on to radiation
4) Pass Go, collect $200 and get on with your life maybe taking a little hormone therapy here and maybe some light radiation there - depending on the pathology of removed tissue.

Notice it sort of sputtered at about step 3? Here’s how it turned out:
1) I had the lumpectomy and had two cancerous bits (and a bit more tissue round about that) removed;
2) I had a single, “sentinel” lymph node removed;
3) All the tissue was tested – the lymph node was negative for cancer – hurray! (That we were told, generally eliminates the need for chemo);
4) The lumps were “technically” clear, but had narrow “margins” of cancer free tissue around it – but they were not wide enough to be confident that the team “got it all.”

So my surgeon said, “Come back to Boston, we’ll try again.” We did. Pretty much the same procedure as the first one, except no need to take any more lymph nodes – they were good little nodes, nice and clean even though they’d lived in my armpit all those years. Lymph nodes were now a known unknown. Or for us liberal folk that can’t stand Donald Rumsfeld, we now knew the nodes were good. Simpler hmmm?

But the original plan has gone awry. Among other things, because I was diagnosed 12 days before I moved, my original treatment team was in Boston, and I now live in Charlottesville Virginia. The surgeon who started with me is in Boston but I have begun assembling a “treatment team” here.

At Boston surgeon’s urging however, I return to Boston for the second surgery. Easy enough – a short flight, same-day surgery via the same incision site as before, re-excise a small bit of breast tissue around the very same area, a bunch of stitches, a patch of surgi-strips to hold it all closed, topped off with a nice, neat waterproof dressing and a couple of oxycodone on the side (yes, only a couple, I threw the rest out – too temptingly recreational to keep on hand). I headed home a couple of days later to wait – again with the waiting. Waiting to heal and await the results of the second set of pathology tests. And wait. And wait.

The second pathology tests are - again – technically just okay. The margins are still “too close.” (I later understand this to actually mean that they ran into NEW but “non-invasive” in-situ ductal carcinoma – but that’s a little technical for this discussion). It was too technical for me to understand from the surgeon's Nurse Practioner too.

Now, home and at my NEW oncologist’s consultation. And she is urging me to consider a third surgery. But this time I balk at the idea of going back for yet a third attempt at surgery in Boston. And now, for the very first time, I hear about the possibility of chemotherapy in addition to more surgery and radiation.

[The inside my head sounds something like this] “WHAT!? But the lymph nodes were clear!!! That wasn’t in the plan! That’s an unknown unknown! Foulball! That is not fair! Tossing that in the game when I least expect it!”

A little explanation: It’s the medical oncologists, or, as we professional cancer patients say, “med-oncs” who direct things regarding chemo-therapy and generally direct the follow up treatment following cancer surgery. Typically we also have radiation oncologists. If you are to do chemotherapy, it’s done first, followed by radiation if appropriate.

My Med/Onc is Mrs. Dr. Brenin. Oh hurray. FINALLY a woman is going to feeling me up on a regular basis! Honestly! Women-friends: if you are the even the least bit awkward or shy about having your breasts examined by strange men - and lots of them – try to avoid breast cancer. Especially at teaching hospital! Just have them lop the damn things off and have done with it.

[inside my head] Let’s listen a little closer to what the Med/Onc has to say. So whaaaah….? Wait. What are you saying? More unknowns? Known unknowns or unknown unknowns or what? More surgery? Again? Wait! what? Chemo?

[inside my head] “Calm down, calm down. Calm down dammit! Get a grip. Sit with it. It’s going to be okay. Another test? What? onco-what? Molecular? Genetic? Wait. Wait!! – this is not a known unknown ever known to me before. Not in the plan! What are you talking about? [re-focusing on Mrs. Dr. Brenin’s actual words…]

So here we go with the unknown unknowns again. Little did I know that tiny, young, looking, but very learned, sharp but personable Dr. Brenin was going to consult with all the rest of the team (including Boston team), look at all the rest of the tests, results, margins etc. before I ever got there and not only is she recommending another consult for surgery, she’s recommending chemo.

[me] “Oh f*ck! What are you SAYING?”

[Mrs. Dr. Brenin] Well, a third excision. Or maybe (I’m holding my breath) a complete mastectomy.

[inside my head] Oh for the love of god! This was definitely not in the plan. Totally an unknown unknown. Help! Help! Make it go away!

[Me to Mrs. Dr. Brenin, straight faced, calm, self assured] Yes, well I’m just not going back to Boston. Enough of that. There must be really good surgeons here at UVA (that's University of Virginia. oh! A momentary trip to tangent-land: I’m being treated at the “Emily Couric Cancer Center” – recognize that name? Couric… that’s right! like Katie Couric of CBS News infamy. Emily was her sister, Emily, who was also the former state senator from Charlottesville. died of pancreatic cancer a few years ago. Katie is an alum of UVA – who knew?)

[Mrs. Dr. Brenin] Why yes, as it happens, there are some really fine surgeons at UVA and one of them happens to be Dr. Brenin. That’s MR. Dr. Brenin.

Talk about keeping it all in the family!

[me, after quite a lot more discussion, to Mrs. Dr. Brenin] Oh. Okay. I understand. I think.

I’m not very much calmer but at least I have an intellectual grasp of what’s being proposed. Here it is: For people like me, with unclear surgical results following a second surgery and pathology tests that show MORE narrow margins – there’s a NEW approach for determining the likelihood a recurrence of systemic cancer.

Let’s back up a little. The whole point of hormone, chemo- and/or radiation therapy following a cancer surgery is to reduce the risk of recurrence. Radiation (and in some cases, hormonal therapy) is meant to prevent a recurrence in the localized area of the known cancer. Chemo is used to prevent a recurrence in a more systemic way because there is always the possibility that cancer cells migrated elsewhere even if they are not yet apparent. Thus, to determine if therapy should include chemo, the treatment team develops a statistical assessment of what that risk of systemic recurrence is likely to be.

Back in the olden days – about two years ago – there was a simple calculation that was done, taking into consideration about 7 factors, which they plugged into a formula, which in turn spit out a number. The number represents the statistical probability of recurrence. Pretty straightforward stuff. But it was not terribly accurate for every individual even though it worked for many. Doctors just didn’t know if many people who received aggressive chemo (with all the attendant side effects and risks) might just as probably NOT have had a recurrence anyway. Their non-recurrence may have had nothing to do with chemo. In other words, chemo might have been completely unnecessary or overly aggressive for many patients because there was no way to “customize” the test – assess each individual’s risk. There was only a “shotgun blast” approach. Killed cancer dead, but left lots of collaterally damaged (bald) walking wounded.

Luckily for me, some devilishly smart scientists came up with a brand spankin’ new means of testing each individual’s genetic code (your very own, one-of-a-kind tumor-tissue! freeze dried and chock full of your own DNA strands!) to come up with a much more accurate assessment of each individual’s likelihood of a cancer recurrence.

So this test, called an “Onco-type” test, is designed to help analyze “borderline” surgery/pathology results like mine to decide what the next plan should be. More specifically, if chemo-therapy should be a part of the plan.

[Heaves a sigh] Got that? Thank goodness for the google. Now I really DO understand. I spent a late evening with the Internet – my best friend – reading about onco-type tests and freaking out at the notion of undergoing chemo.

Thanks to cooler heads than mine (and you know who you are) I was promptly peeled off the ceiling and likewise not allowed to wallow in the shallow pool of self-pity for too terribly long. Instead we (Diane and I) went to the swimming pool that day and I immersed myself in a great novel (“Lil Bee,” by Chris Cleave). A really good plan for that day.

Many unknowns. And more waiting. But here’s what me and Mrs. Dr. Brenin have planned – together with the Mr. Dr. Brenin, surgeon and Dr. Read, radiologist:

1. Get an MRI – see if we can tell (without further surgery) if more surgery is appropriate. In fact, the MRI was done last Thursday. As an aside, it is a much more miserable procedure than I ever imagined. They forgot to give me earplugs. For anyone who's ever had an MRI with your head in the imaging tube, you can probably imagine why I would rather have been waterboarded. After doing that laying face down with my arms over my head for 40 minutes keeping perfectly still (a bit of a stress position for women that have just had breast surgery) and no earplugs. It feels a bit like being the clapper in a giant brass bell. Sucked to be me that day. Sucked more to be Diane who had to put up with me after.

2. Schedule surgical consult with Mr. Dr. Brenin – that’s on Sept. 14th unless he gets a cancellation sooner.

3. Research insurance coverage for onco-type molecular testing. It should be covered, but its expensive - $3000 – and best to be sure and check on the co-pay!. But then, I just got a bill for the slide prep, so I guess it’s going forward…?

4. If covered, get the onco-type test and expect results 11 days later.

5. Wait. Always the waiting. More freakin’ waiting! .

Now. Here’s the part that kind of has me not too terribly happy (on top of the damn waiting)

Even if there’s no further surgery, says Mrs. Dr. Brenin, based on the “old fashioned” calculation as to whether chemo-therapy is in order – chemo definitely IS in order in her opinion. The magic number is 15 or below. Mine was 25. Not good. But that number (risk of recurrence) can be greatly improved with chemo, hormonal and radiation therapy.

And now there's no stopping it. Not even in the doctor's office. No more straight faced. No more self assured. No more funny little asides to break the tension. The tears well up and spill over. Oh thank god for women docs! She just let me. Reached out and held my hand and let me cry. Handed me a Kleenex.

[sniffs, wipes her nose] But, says Mrs. Dr. Brenin, “you still have a 100% curable cancer.”

Here’s another way of putting it: the onco-type testing will really only be used to rule the chemo-therapy option out. If, by some magic surprise (a pony!?) my newest unknown unknown - my onco-type test - comes back with a good number maybe, just maybe, I can avoid chemo-therapy.

Mrs. Dr. Brenin is pretty unequivocal. Chemo? Pretty much plan on it. And with it, plan on losing your hair; plan on being kind of sick. Not debilitatingly so – but not much fun those days of treatment either. Four courses of treatments, three weeks apart each time. Not too bad. It could be worse. Oh and good news! My hair will grow back and it might be curly for a year so.

Have you been looking for an investment for that hopeless 401K plan that tanked last year? Buy stock in companies that make hats, people. Or scarves. Wigs? (though I hate those last two looks, probably hats). Looks like I’ll be buying them for every color in my wardrobe soon.

All kidding aside. I have to say this has all come as a tremendous shock. This whole cancer thing? It was supposed to be over by now. Or getting close to the end. I was extremely upset Monday. Then again upon waking very early Tuesday morning (as I do when I’m stressed) I cried as I ran my fingers through my already far too short, very sparse, baby fine hair. But each hour that goes by is a little easier. As the day goes on and the sun gets higher, I let go my fear inch by inch. Open flex one finger at a time and let my angry fists become open hands again. I can do this. I will do this. I have help. I will ask for it. I have each of you. And I have much, much more.

I’m still really quite okay. Not “sick.” Not in any pain at all (when not in the MRI machine anyway) and it’s really hard to tell that anything at all is wrong with me except for these rather silly little surgical scars (that are healing up quite nicely thank you). Except they keep telling me that I have this thing. This cancer. This malignant, yet sleeping set of cells that I have to keep at bay using some weapons of mass destruction: chemical weaponry, some rather sharp instruments and something a bit like, well, a death ray gun! The whole thing makes me tired just to think about it (and a little depressed at times).

But, for today - JUST for today - I bought more orchard ripe peaches up on Carter Mountain. The last of the season I think? I looked out over the orchard, down over the arbors full of black grapes shaded by bright green leaves - very near readiness on the vine; look down, down across the round, blue, cutout and shadowy shapes that are the Blue Ridge Mountains. I thought, life is still good. Just for today.

I hope yours is too.

I have; and have not

No no. I'm not waxing all Hamlet like. Well maybe just a little.

Today it is quiet enough and early enough to tap out a few words. Diane is with the new grandbabies. The dog has been walked. It's raining. A good day to write.

I just finished reading a blog post over on Daily Kos that triggered some thinking about what I have, and what I have not.

I've been meaning to Think Out Loud about this for awhile.

I have no job. Still. And have not had one since January 16th 2009 - a day also known as "Black Friday" - the day it was announced that about 500,000 Americans were "laid off" - "down-sized" - "made redundant" - or just plain "let go." There was little comfort on that day in being a part of such a crowd.

Being let go was - and is - a good thing. It gave me time. Time to visit both my brothers who live far away who have small children that I seldom get to see otherwise. Time to care for my father who, a short time later, became very sick, very suddenly and has remained so for a long time. It gave me time to reflect on my relationships - with my family, including - especially - my partner, Diane. And to enjoy her son and daughter-in-law and their brand new twin boys.

Being unemployed (and collecting unemployment) gave me time to reflect on what I was doing and how I got there and what should come next. I'm still reflecting on those things and no clear answers have emerged yet.

One thing did become clear. I needed to make a geographical change. For my partner, for my parents and ultimately, for me. So we find ourselves now, as of mid-June, in Charlottesville Virginia. But before I got here, I found out I had something else.

I have cancer.

Breast cancer to be precise. A very curable form of breast cancer.

I found out about a week and half before I was scheduled to move from Boston.

I was stunned. Shell-shocked. Then I was afraid. Of the cancer, yes of course! But mostly of the uncertainty. What kind of cancer was it? How and where would I get treated? Would I lose my hair? Be very sick from the treatments? How would it be paid for? Was my insurance sufficient to deal with what was to come? Would I die?

I do have insurance. It is a very expensive COBRA'd benefit made more affordable by a 9 month subsidy through the "stimulus package." It turned out however, that my insurance plan was not sufficient to cover me in Virginia - and I was moving in a week. But even that turned out okay.

I have amazing people in my life who rallied round. My doctors and friends made sure I got in to Dana Farber Cancer Institute and was seen and treated by the best of the best, faster than I ever believed could be possible. Friends and former colleagues moved heaven and earth to ensure that my available health insurance plan was modified (even though I no longer work there!) to cover my follow-up care in both Boston and in Charlottesville.

And so here I found myself. Missing two tiny pieces of my anatomy ( a lymph node and small lump ) and suddenly - like Dorothy landing in Oz - in a new and colorful land. In the south. Virginia. In the Blue Ridge mountains.

I have a pathology report. The pathology report is almost entirely good. No signs at all of cancer in the lymph node. And the lump that was removed was very small, I detected it very, very early (and I should say, somewhat serendipitously. I have some good luck or a god watching over me or both) On the down side, I must return to Boston in two weeks time because the "margin" around the removed lump - the area of cancer free tissue - was just a tiny bit too small and they want to "re-excise" it to ensure a nice clear margin of cancer-free tissue. Annoying, but nothing to worry about. I'm told they will go right back in where they did before (no new scar, recycling the old).

Oh! That's something else I have. Two small, rather delicate scars - about 2.5" long each. One in my left armpit, and one - without arousing too many prurient images I hope - on the upper portion of my left breast. They are a little annoying, sensitive, itch a bit as they heal and the stitches dissolve. They are healing nicely thank you and will probably be nearly undetectable in time. Thank you Dr. Iglehart.

I have a couple of weeks of unemployment benefits left and perhaps some unknown number of weeks of extended benefits. I cannot tell about the extended benefits yet. I spent over three weeks dialing and navigating the labyrinthine telphone menus of the Massachusetts Department of Unemployment Assistance (DUA). At the end of each attempt to call, I found I couldn't even get in a hold queue; the lines are simply so overloaded that the recording just tells you to call back on another day (not "later" - but "on Friday" or "on Tuesday"). I also can't tell when my claim should be switched to a claim through Virginia as I have similar problems getting through to Virginia. I finally got through to the Massachusetts Extended Benefits line this week. The caseworker - who was very nice and patient - told me that I have to wait until I actually exhaust my regular benefit and then call back to file my extended claim. And I will.

I have a very thick file of jobs that I've applied for and either heard nothing, or received polite rejections. It's a bigger file even than the one that I compiled in my third year of law school and shortly thereafter. I could have wallpapered my office with that one. This one will rival it substantially.

Recently however, I have developed some hope. At last I have an agency in Richmond - an hour and some down the road - who after an interview and exhaustive testing and conflict checking, is anxious to put me to work on temporary "document review" jobs. I even had an assignment, until the law firm decided they weren't ready to start their project. Still it is something.

That's okay. Since I don't have an assignment I can take advantage of an invitation to my cousin's beach home next week. She lives on Bald Head Island in North Carolina and decided that we - Diane and I and dog - could use a break before my next trip to Boston for the "re-excision." I have some kind and generous family members.

I am trying very hard not to dwell on what I have not. Not having a job or a piece of flesh is a fact, not a feeling. I can't change those. I have plenty of feelings around those facts and other events. But feelings are not facts. Feelings must simply be felt and let go. The love, the fear, the anger, the gratitude. Feel them all and move on.

There are other things that I want, or think that I need. I could just as easily list them here - those things I have not. But chasing a negative - what I have not - is not helpful. It is destructive. It is something to let go of and accept. And acceptance, plus gratitude for what I have, is what I will try to maintain, in this moment, precious moment, in time.