Saturday, November 5, 2011

O-blah-dee O-blah-dah... Life Goes On.... BRA! (or not?)

Actually, I much more frequently went bra-less in the years prior to having a mastectomy. This may be too much information, but when they take it off, and take a lymph node (even one) with it, it leaves you prone to swelling or "lymphedemia"  -- a snug bra helps control that. Grrr.  You know how guys like to go "commando" -- I kinda felt the same way about brassieres. Seems those days are gone.
Not quite two years ago, I wrote entries below from a place of pain – both physical and psychic.

It also came from a place of fear and anger though tempered with the many lessons I’ve learned about managing those twin juggernauts – most especially to ask for help with them.

Since then, my physical recovery is very much on track. I am “cancer-free” at the moment though I still have to see one form of “cancer doc” every 4 months (though I believe that changes to every six after the next visit). My mammograms have all been good – though I only have to get one at each visit as there’s no mammary tissue on the left to “gram” anymore. And I only have to go for the big squish once a year now. (was ever 6 for awhile)  Blood tests are all good. I take my daily dose of tamoxifen and suffer my night sweats, hot flashes and leg cramps with equanimity of knowing that it beats dying of cancer. And its temporary until my estrogen stops flowing altogether.

In the end, I didn’t have to lose my hair from chemo or suffer the indignities (or burns or scars) of radiation therapy. There was nothing left to radiate and the odds of recurrence were calculated to be lower than what justified the poisoning of the rest of my body to prevent it.

I did suffer an emotional setback when Elizabeth Edwards – wife of politician John Edwards – died last year.  Her diagnosis and treatment had been much like mine. Diagnosed in 2004, she was – after surgical treatment and medication very like the one I take – in remission for a few years. Then in 2007 she was diagnosed with a recurrence at which time her cancer had spread to her bones. It killed her at age 61 in 2010.

And last year, I lost five friends or classmates to cancer. Five! That was a bit of an emotional challenge. A bit. 

But in the meantime, I’ve moved ahead. Continue to do my best to look to my aging parents best interest and spending quality time with them.. Finding the time that I can with the grandboys (three! All under age 2 ½).

I took (and finally passed) the Virginia bar exam. Last January I opened a private practice focusing on Elder Law. We moved into a newer (bigger) apartment. We have now upgraded both cars (we are both driving Mini Coopers!) with the complete faith that I will not only live, but grow mentally and spiritually and possibly even prosper materially.

I still volunteer at JABA as an “ombudsman” at one of the local nursing homes and with the Legal Aid Justice Center and now with the Central Virginia Legal Aid Services – trying to give back just a smidgen of the blessings that have been visited  upon me.

And for every pro bono case I have taken, a paying client seems to materialize – and then some! But I don’t truly believe in that sort of immediate, kharmic quid pro quo.

What do I believe in? Just the same old thing – put one foot in front of the other, do the next right thing and when I’m not sure – ask for help. And when I am asked, say yes.

Seems to be working so far

Saturday, January 30, 2010

Navel Gazing, Redux. WAIT! WTF have they done with it....?

What the hell did they do with my belly button? How am I supposed to navel gaze now?! Read on if you want to understand more about this situation.

I promise I’m almost done obsessing. Really. I just need to get all this out of my system so I’m determined to write about it. Now, more than a month after surgery, I’m only just now coming to terms with it. I feel like I’ve been through the profoundest of changes and not just to my body.

Full disclosure: this may be a little rough to read. I think it gets me to where I wanted to be in the end, but you've been warned. Proceed with caution. Or a huge cup of coffee for most of my friends (or bourbon is you're Trish).

By December 23rd, the surgery date. I was sure I’d settled down and able to tame most of my feelings and fears, or at least got them down to reasonable, manageable size. Found myself that morning, at the hospital early, calmly checking in at 7 a.m. Diane was with me naturally.  We were registering and waiting for my brother, Michael, who had surprised me by flying in (from Israel, where he lives) two nights before to be with me and help Diane out. Mike went to spend the night with my parents the night before and was trying to get back in time to meet us in pre-op before they took me down. He arrived just as I was going up to where family can wait with the patients. I found myself quickly wearing nothing but a backless johnny, an oven-warm blanket and footies, with an I.V. pumping fluids in my arm, and with the two people I care about most in the world on either side of me. What could go wrong?

Nurses hustled in and out, checked blood pressure, blood sugar, temperature, ran down the list of medications I take (for the thousandth time) The anesthetist nurse came in and got the hep-lock in (the IV port they administer stuff through) he was a bit older I’m happy to say. The anesthesiologist (doctor) popped in to talk for a few minutes. Happily, he was another mop of graying hair. I like my anesthesiology team with grey hair – lots of combined experience. Dr. Brenin, my breast surgeon stopped in to say good morning and to say we were just waiting for Dr. Drake, the plastic surgeon and his team. Dr. Drake arrived a short time later and had some last minute measurements to take and markings to do so everyone else cleared out while I once again disrobed. It’s a bit like working with a dress maker. He takes out his little leather satchel and pulls out a measuring tape. I was expecting tailor’s chalk next, but he uses a bright blue ink. He’s soft spoken and gentle and puts me at ease as he measures from the topmost point of my sternum (where my collarbones meet) to the center of each breast and makes a careful note. I think he marked something across my mid-riff too but I don’t really remember. Off he goes to scrub and everyone else comes back in.

Diane has to go to work in a little while. We’d talked about this. Since I will be in surgery for hours to come I encourage her to go ahead and start her day since hanging out here is just nerve wracking. I will need her more after and why take off time unnecessarily when she can’t do anything but sit and worry? This is the hardest part, holding her and saying goodbye. I don’t know why. I guess I don’t know what might happen, if I’ll wake up so very different, if I’ll wake up at all. Mostly I’m just frightened and don’t want to say goodbye at all. Neither does she but off she goes just the same. It’s easier now. Mike and I can laugh a little now. He’s easier that way but I can tell he’s having a tough time too. A short time later the nurse anesthetist scoots in and says its time. He sits along side me, Mike stands up, something goes in that hep-lock and second later…. that’s the last I remember. No preliminaries or warning - I am instantly unconscious.

I was on the table for nearly six hours. My brother told me later that each of the surgeons called him – personally called – as each stage of the surgery was completed and in between sent nurses to update him throughout. They said they would, do that, had in fact, written his cell phone number on the pants of their scrubs while we were still in pre-op. That was amazing and a great reassurance to both Mike and Diane (who he called or text-ed with each update).

I’m told that they don’t let you out of the recovery room until you’re breathing on your own and they can verify that you can swallow. If I woke up there, I certainly don’t recall it. Diane was there by my bed when I did come around though. Michael had gone back to my parents after a long day of waiting once he heard I was out and okay.

Someone asked me the other day what’s the first thing I remember and I instantly replied, “throwing up” – and that IS the first thing I remember most clearly. Perhaps because it was so painful and unpleasant. But then, Diane mentions a few things and I also begin to recall hazy moments before throwing up. I must have been awake before because I had to have time to eat the eggs I later threw up.

There is another person in my room. I am sharing a room in the burn unit of ICU with what I later find out is a 15 year old girl who has had a double-mastectomy and reconstruction. I am so groggy I don’t notice her much then. I do remember apologizing in advance for snoring. I don’t know why that seemed important to do that; I just knew I would snore since I could only lie on my back. As if she weren’t suffering enough already without me sawing logs next to her. She was very gracious and said not to worry about it. Don’t know why I remember that of all things. She was discharged the next day and I had the room to myself for the next several days. There’s a good reason for that.

The room had to be kept at 80 degrees or so. Why? The reconstruction “flap” includes a lot of vascular surgery – very delicate and crucial new blood supply to the tissue they’ve taken from my abdomen – and just like skin grafts, they have to ensure that it is going to “take” – which is why I am in the burn unit. The oven-like temperatures ensure that the blood flow is wide open and supplying oxygen to the new tissue. To me it feels just like a sauna and for the next four days I will mostly lay in a pool of sweat and a tangle of damp sheets.

At first, the doctors will come in once each and every hour to ensure that my new “flap” is indeed receiving blood flow. (later, merely every four hours). Notice I used “doctors” - plural. Remember it’s a teaching hospital. I have a whole gaggle of residents (all but one of them male) tasked with rotating through every single hour – day and night – to come in and look at my newly constructed breast. Did I say look? I meant to say, “check.” They peel back my sweat-dampened johnny to have a look at the Tegaderm dressing, check the incision site (Tegaderm is a very thin, transparent, sterile dressing - so I too can see everything – more on that below). Then they have to feel the skin temperature and finally, the gently press on the skin to see if it blanches then refills with pinkness which means good blood flow. It doesn’t hurt, not at all. In fact, I can’t feel anything at all except the vaguest pressure. There is no nerve sensation at all – not hot or cold, no pain nor pleasure. There still isn’t and there never will be again since nerve tissue does not heal or regenerate.

At some point I am awake enough to try and figure out what is going on. There are a lot of accoutrements connected to me and it takes me days to figure them all out. For the first day and night I am catheterized – there is no chance I will get to a bathroom or very likely be able to move enough to get onto a bedpan even. I am receiving oxygen. I didn’t know it then but am told later that they had to keep waking me up to remind me to breath at all and my oxygen saturation was so low at one point Diane got worried and sat me up and made me breathe deeply just to get my lungs expanded and working again. Aaaah morphine! Yes, of course I had a morphine drip – with one of those self-administering buttons that I may press every eight minutes for a little shot of morpheus sleep. I believe I pressed it every six minutes. I also have a bag of insulin dripping into my arm to try to keep my diabetes under tight control (to promote healing more quickly). And the ever present bag of “fluids.” There are more tubes and bags connected to me at other points but I can’t stay awake long enough to follow them to their ends or figure out what device the are connected to. Somehow I eat something.

Ultimately I get that there are a number of wound drains (“Jackson-Pratt” or JP drains) – little rubber bulbs very like the ones used to inflate a blood pressure cuff, only these are transparent. They are attached to tubing that goes into the two surgery sites to drain fluid. The bulbs are used to create a constant low level of suction. This arrangement promotes healing from the inside out. The tubing for them is inserted into the surgical site and is stitched with one or two stitches to my skin to hold it in place. The bulbs (where the fluid collects) are pinned to the inside of my gown so that they – theoretically – don’t pull out or against the stitches. It feels like I have several little rubber hand grenades strapped inside my gown. There is a large, humming machine on the floor to my left with a cord running out of me and into it. There’s a little black nylon pouch on the bed beside me with smaller tubes running into the abdominal incision. Later I will learn that the former is a monitor to read the status of the INSIDE of that wound and that the tubes from the black nylon satchel are pouring a painkiller directly into and along the full length the abdominal wound.

Perhaps I should explain a little better….

The mastectomy part of this procedure was the easy part (physically anyway). It took less than an hour; they cut it off leaving behind as much skin as possible for use in the reconstruction. I lose a little more skin because they have to accommodate the scar from the earlier surgeries (there were three earlier lumpectomies this year).

The reconstruction requires that they take some of my own tissue, in my case, from my lower abdomen, to recreate a “natural” breast. I knew that the procedure would result in a “tummy tuck” to even things up. And I even knew that they would be “adjusting” my navel in order to make sure it ended up in the right place. I did not know that the “flap” they would be taking would be ten full inches out of the right side of my abdomen. The flap includes skin, fat and a small amount of my “six pack” – ab muscle - as well as the blood supply. The incision, in order to later even things up, runs from the outside point of one pelvic bone, to the point of the other, the clear across, riding low along the contour of my gut. Then, to close this up, they must stretch and pull this and sew it up. Ten inches. Pull and stretch it closed. And stitch it up – several layers deep.

Meanwhile, Dr. Drake does microsurgery to connect the blood supply and this tissue on to my chest where my left breast has been removed down to my chest muscles, connective tissue and all the large nerve endings there.

Get the picture? Not pretty. Doesn’t feel too good either.

It took me days to figure what all the tubes and lines and things were. I couldn’t look at most of it. I was forced to look at the breast incision each time the doctors came by to check it. I was shocked at first (and for a long time) because even with the effort to preserve as much skin as was there originally and the ten inches taken from my gut, there was not quite enough to close it fully and cleanly. Instead there was what appears to be a large gash on one edge. In fact that’s exactly what it is. And though it is stitched up inside, the skin - even today - is healing from the inside out. Healing slowly – very, very slowly.

Meanwhile back in the burn unit, I slowly begin to realize they’ve done something odd with my navel. I can’t figure out why there is also a Tegaderm patch over my navel and it appears to be stitched up. It doesn’t hurt, it just seems odd.

I’ve had some visitors. Dr. Brenin’s nurse practitioner has come by and brought me a little gift. A small pouch, it looks like the type you would where around your neck under your clothes while traveling to stash your passport and other valuables. This one is for the drains. She seems strangely uncomfortable at the hospital – maybe it’s the ICU. She looks like a deer in the headlights. I suppose she’s used to seeing people in clinic – not at this stage. The drain pouch will turn out to be way too be much too small to carry all the drains I have - though I will stuff them in to use it in the shower.

Dr. Baum, the cancer center’s psychologist, whom I have been seeing for a couple of months, also comes by. She gets to meet my brother and is re-introduced to Diane. What a wonderful calming presence she is. I have no idea what I might have said to her. She later told me I was very “gracious.” I wonder who that was she was really visiting?

My new friend Heather stops in on the second day. I’m still pretty loopy but very happy to see her. She teaches Religious Studies in the History department at the University. She’s intelligent, funny and great company. She’s also a recently ordained Episcopalian minister. Another joyful and healing presence. She’ll come one more time before I’m discharged.

“Electronic” greetings find their way to me from Salisbury, Maryland from my old friend Liz LaPosta. Also from June Gallagher in Boston. Funny, both are people I know – separately - from two different Unitarian Universalist churches.

And dear old Corrine and her husband, a new acquaintance here in Charlottesville also make it by despite all the snow still on the ground. She brings me a lovely, colorful blanket just to brighten the hospital room up. Though another blanket is probably the last thing I need in this hot room (I will use it a lot later at home)

By now, I’m more and more aware of my surroundings. The next day, my brother drives my parents the hour and half from Lynchburg to see me. I’m till groggy but able to say hello and stay awake long enough to visit a little while. My mother pulls a chair alongside and with more concern on her face than I can recall in years, she takes my right hand and just sits for a bit. Dad is at the far end of the bed and says little, seems content to watch over me for a little while. I wonder then – and now – if he has any awareness as to what it was like for us to sit vigil at his hospital bedside weeks on end as we have so very recently with him (he was seven months in the hospital not long back, including an 18 day marathon we thought was a deathwatch in ICU). Mom later goes down to get lunch with Mike while Dad pulls his rollator (walker with wheels) alongside the bed. He rests his head on his crossed hands and we take a short nap together in the companionable silence. Mom comes back with a hot dog for Dad and they soon head for home. I press the morphine button again and again.

About the only way I’m able to move at this point is with the help of the power-bed or having the nurses (or Michael and Diane) use the draw sheet to pull me upward in the bed and prop me up with pillows (this process is agonizing). In this way I’m able to sit up enough to eat. And somewhere in here with Michael and Diane alongside me is when I throw up. Feeling something like a filleted fish, this is perhaps it is one of the most excruciating experiences of my life. Diane and Michael are wonderful – neither one at all squeamish – they catch most of it in a basin, the rest in towel and then clean me up. Diane the pro that she is and Michael – well Michael. God love that boy! How lucky I am to have such people in my life.

The second day, the catheter must come out. Hospital-born infections are often introduced through such means so out it comes. That means getting up to the bathroom. At first, the anesthesia and the painkillers have completely prevented any contraction of my bladder. I’m grateful because the last thing I want to contemplate is getting up. Eventually of course, all good things come to end and I must get up. Diane and Michael and two nurses are there to help. I think I might die – I’m sure I whimpered at first, definitely cried and maybe outright screamed eventually - but eventually I am somewhat upright, if bent nearly double. I will remain bent in a crouch for some time to come. Somehow I manage to shuffle to the bathroom after hanging all the various plugs, tubes, monitor wires etc. around my neck to avoid getting entangled in them. For the next several days going to the bathroom will be just this tortuous. And then the nurses (including Diane!) decide that I must have a bowel movement too “or else.” I dare not think how bad the “or else.” could be. But one nurse takes pity and decides to go at it in stages – we’ll start with the softeners, move to prune juice and if that doesn’t do it, then we’ll go to milk of mag and then…. thank goodness we don’t have to go beyond the prune juice. Aaah the miracles of natural remedies! Nevertheless I think even as easy as that “passage” would normally have been, it is agony with a gut sewn up like a drum.

Diane is my hero. She understands that nothing is as comforting as a bed bath, a gown change, sheets straightened or changed altogether, massaging hands and feet. “Old school” nursing at its finest. And I am here to tell you that it IS healing to have that kind of care. The nurses at UVA seem much more interested in their technology generally, their computers especially, their medications and their charts. The one time I thought I was going to get a bed bath (even with all that sweat!) the aide brought me a tub of warm soapy water, a stack of towels and a gown and left me to bed bathe myself. Michael, not in the least squeamish with his big sister, is not put off by having to remove the “top hat” full of urine from the toilet so I can use it otherwise. He is strong and steady and will help me shuffle around without fear of falling. He will get me a cool cloth and mop my brow when I am running with sweat.

Still, sometimes very late in the night. I awake in a sweat, alone, afraid –and depressed. I have to call someone to help me get disentangled and get up to the bathroom. It often takes a long time for anyone to come. The night aide is a short little man, with thick glasses and a bulbous nose and a heavy build. He was either injured or somehow disabled in such away that he drags one leg in and out of my room in the shadowy glow of the fluorescent lights in the hallway. He’s very nice, gentle and solicitous, but he always makes me think of Quasimodo. Everything is monstrous at 3 a.m. Thank goodness for Percocet. I go soundly back to sleep to dreams often worse, sometimes just weird.

More often I will awaken, day or night, and either Michael or Diane are right there by my side. Sitting quietly in the half light bent over a book or dozing. Sometimes I’m sure they don’t even know I’m awake. I roll my head slightly to the side just enough to see them there and – reassured – fall back asleep.

Like all things, this too will pass. Soon, I can eat, I can pee, I can shit. I can even sit up by myself – most of the time. Before you know it I am even shuffling out the door and into the hall, as far as the nurses’ station, then beyond. They are thrilled for me and cheer. Movement means blood flow. Bloodflow means healing.

And finally, finally, they turn the temperature down to something approaching normal in my room.

On the sixth day, Dr. Theopaldy, one of the residents, comes in very early in the morning to check my “flap.”

“We’re thinking maybe you should be going home today.”

“Are you sure?” I’m sure my voice quavered. There are still too many tubes and devices sticking out of me. And I’m not sure I can fend for myself. (As if I would have to!)

“Well, we would never force anyone to go that doesn’t think they’re ready, but there comes a ‘tipping point’ where it is more dangerous for you to stay in the hospital than it is advantageous. You are at that point. The dangers of staying in a hospital, of infection….”

I stop him. “Okay, I understand. But I want to talk to my partner and brother and make sure we’re all ready.”

Later in the morning, they make way for another bed in my room. A new patient is wheeled in. A new kind of nightmare is about to begin. My new roommate is a caricature taken from the film, “Deliverance” – but with a cell phone. She has no teeth. She is caught up in a drama in which she took the leading role. She tried to “fake out” her boyfriend or husband (both?) that she was going to “end it all” by pretending to jump out of a moving truck. Only while pretending she is pulled out of by the shock of the air pressure and door swinging open, only to be sucked under the rear wheels where both her legs are crushed. I hear this story in varying volumes, variations and intensities– plus protestations of “I’m done drinkin! Never agin! and I don’t need no mo’ cigarettes neither! I’m done with all that!” For 8 hours I listen her tale of woe and in the gaps I listen to her moan in pain and fights with the nurses who want to her eat (she is up for surgery the next day and must fast after midnight) – which of course she cannot do without her teeth. Soon, a parade of raggedy family members – who all look disturbingly alike – come in. At one point she has eight visitors crowded around her bed yammering all at once in our room. And each is louder and rowdier than the other. In an ICU room.

I fear my compassion is at a low ebb.

I am furious with the nurses who should have got this circus under control but seem helpless.

At last, my doctors are making discharge noises and now I am eager to go as nothing could be more miserable than this arrangement. The thought of spending the entire night like this is more than I can bear. Unfortunately, Dr. Drake is now in surgery and we must wait for him to “pull the trigger” on the discharge process. So we wait. And wait and wait and wait. And suffer. I want to blow my brains out.

Finally, sometime around 7 p.m. Dr. Theopaldy is back and apologetic. He is also shocked and dismayed at my roommate. (He will later tell me privately that he pulled every string he could to keep me in a private room for all the other days I was there, but he ran out of juice when they had no other beds anywhere and I was due to go home anyway). With raised eyebrows HE finally goes over to tell them to be quiet. They completely ignore him. He takes one look at me and rolls his eyes and he gets the discharge moving himself.

I slowly get up and for the first time, get dressed in something other than a hospital johnny. I have to figure out ways to juggle the drains which will remain in place even though I go home. I must be instructed on how to “strip” and empty them as well as measure the contents and chart the amounts before I can go home. I will do this for another two weeks. I pin them inside my big loose sweater and somehow get it over my head. Irritable and anxious to go, I move into the hallway and sit grumpily in a wheelchair rather than in the hospital room from hell while I await the discharge process and transport downstairs. Another hour or more goes by. By that time, the hospital pharmacy is closed. They could administer a single Percocet before I left, but they could not dispense any (I was taking them every 4 hours or so and there was no way I would get through the night without more). That means a stop at CVS while Diane runs in and waits to have them filled.

Finally, the teenage volunteer working for transport wheels me down to the front door while Diane goes to get the car. The nurses all along the unit are all too busy with their evening tasks to say good-bye but eagerly wave and shout out well wishes as I go by.

It’s bitter cold. I ease into the – blessedly - heated front seat of our Volkswagen Passat and ease the seat back as far as I can stand it. Diane gingerly sets off, darting her eyes over my way every few seconds to make sure I’m not getting jarred with each bump along the way. Thankfully, the Percocet has kicked in and I feel very little – or don’t care about it anyway. I feel nothing except relief at getting out of that madhouse.

20 minutes dozing in the parking lot of CVS while Diane shifts from foot to foot impatiently waiting for my prescriptions. Then we are home. Well, nearly home.

Did I mention that we live on the third floor? And have no elevator? No?

Here is one of the more remarkable, generous gifts I was given.

The complex where we live is owned by a couple of real estate lawyers and run by a management company. Business people. In it for profit. It’s an attractive complex, award winning I’m told. New, lots of amenities, a great location with beautiful grounds and views. They have some units that are leased by corporations who house their managers and executives when they are relocating. Some are leased by traveling nurses. A month or so before the surgery, when my surgeon related that he thought I might have some trouble with stairs (!!) I asked our leasing agent if they might have a corporate unit that was vacant during the period I would be recovering. She promised to check – and did.

Days before the surgery, we still had not worked this out. I sat in their offices talking it over and the property manager, Melinda, stepped in and said, “What? We haven’t sorted this out yet? Hold on a minute, I can fix this…”

She stepped away for a minute. Lisa (our leasing agent) and I looked at each other and shrugged. Mel stepped back in a few minutes later. “Okay, that’s that. You can have our three bedroom model unit.”

I assumed it would cost a fortune and we really didn’t need three rooms. When I asked I was told “Don’t be silly! You don’t have to pay us for it! We can do this for you, besides, no one is going to be looking at apartments in the first week of January.” They gave me – free of charge - a three bedroom, elegantly furnished, luxury apartment with the best view of Carter Mountain, the pond below and all the wildlife and treetops you could ask for. Furthermore they would not let me pay for the heat or water I used or to have it cleaned. They gave it to me “for as long as you need it, you just get better.” I was stunned. Grateful, but stunned.

The apartment is huge, immaculate, nicely furnished and had the most restful view I could hope for. I credit my time in that serene space with a speedier than normal recovery.

So, there we were, that first night out of the hospital, almost ten o’clock at night, dark, cold, irritable, in pain again and “almost” home. Diane throws a sheet on the bed, gets together some blankets and pillows and tucks me in. Drugs on board and I don’t remember anything else after that.

The next several days are a bit of a blur. I would sleep (a lot) sitting up – propped up on pillows – with two more stuck under my knees, that being the only comfortable position I could find. I slept like that for weeks. However, out of the hospital I was quickly hobbling around the apartment much more. Motivated by a better view to boot. Diane was gone to work most of the day and after another day, Mike had to head back to his own family in Israel after walking our dog for Diane and loading us up with groceries.

Generosity continued to flow down on us from all quarters. Cards, calls, visits. Diane’s sister – with whom I’ve had almost no contact over the years – sent a wonderful gift package; there came a breakfast basket from a law school buddy I’ve not seen since graduation. Long, long phone calls from friends in Boston, Salt Lake City, Washington. A whole flock of new Charlottesville friends scooped me – and Diane – into their caring arms. One made a fabulous three-course gourmet dinner for us. Another brought by a gigantic pot of hearty, homemade chicken soup and all the sides to go with it,. Another would spend the better part of her day toting me to doctor's appointments, waiting with me in dingy waiting areas, making me laugh (despite the pained grimaces that meant too) and helping the time go by so much more quickly. And the visits. Just to have people keep me company. Crowds! One day there were twelve women at once in the living room! Unbelievable.

There were still plenty of struggles to come. Showering was at once agony and ectasy. Delicious to be clean – hair washed and all. But I could not stand straight and somehow had to manage the damn drains and wash at the same time. The gut muscles were bad enough, but my back muscles had also become very weak and I wasn’t able to hold myself upright for very long to stand under the shower. Baths were out of the question due to the danger of infection and not being able to have the incisions/stitches soaking.

Poor Diane – after nursing all day in her day job only to come home and have to nurse me too. Not to mention shuttling between the two apartments taking care of me in one, the dog and cat in the other needing her attention and affections. I don’t know when or if she ever rested herself. As if it wasn’t already taking a toll on her. (The one proviso for using the model was that the dog could not come in the model apartment – fair enough!)

Worst of all, I was faced with mirrors. They seemed to be everywhere. Placed strategically so that I could not evade looking in them – especially when unclothed. There was no avoiding it now. I couldn’t step out of the shower without a full frontal view in the mirror. There were other huge mirrors elsewhere.

I had already seen what they had done to my breast by looking down on it from above. But now I was seeing the whole thing straight on. It was shocking. There’s an incision that runs in a full circle around it and a jagged edge where there’s a gap on one side. It was badly bruised and the jagged edge looked bloody (it would form a scab which is slowly healing from the inside out - still) The reconstructed breast looked odd – blind? - because there is no nipple.

I had also not yet seen the full incision on my abdomen. When they checked it at the hospital they would lift my johnny so either the johnny or the sheet blocked my view – or at least kept me from seeing the entire thing at once. Even with my new “tuck” I admit to having a bit of a bulge above the tuck that that limits my view from directly above. In hospital I successfully – easily - avoided looking in any of the mirrors that I might have looked in.

Then there were those drains with their tubes– two hanging out of holes poked in my lower pelvic area on either side, and another originating somewhere on the far side of my (new) breast where I thankfully couldn’t see it go in (but I sure could feel the pinch of that stitch!).

I cried and cried and cried the first time I had to look at it all at once.

As if the physical pain wasn’t enough to bear.

I had finally figured out – while still in the hospital – that they had made me a new navel, that’s why I had the Tegaderm dressing over it. They had dressed the new stitches. But I could not for the life of me figure out what they had done with my original. Where was it? It took me quite a long time – probably 10 days or more – to find it (I didn’t like looking). There was a little tiny scab – smaller than the head of a nail – all the way down and drifting off to the right near where some of the triangle of my pubic hair had been shaved to. That was all that was left of my navel. They cut the whole thing out and made me a new one. That’s right. Got an innie and always wanted an outie? Now’s the chance to get the belly button you always wanted. Navel gazing would never be the same again.

I would later describe this feeling as being “Frankenstein-ish” – all parts and stitches everywhere. Diane would talk to another friend who had the same procedure done (a double!) and she would use the very same phrase so apparently it’s not that uncommon. Poor Diane. Even, nurse that she is, she had a hard time looking at all this; not because she’s squeamish, but because it was me. She also could not stand seeing me in so much pain, though she ministers to people in dreadful pain all day, every day (she is a hospice case manager).

Eventually, this too passed. Well, it got better anyway. And continues to get better all the time. It looks better for one. The body is an amazing thing. It heals magnificently. Once the drains came out (thank god!) I was not only infinitely more comfortable and able to stand up more easily, I was able to feel like something other than an alien being with tentacles growing out of my body. I still have quite the zipper across my gut but it will fade with time as will the mastectomy scar.

I began moving about pretty well. I am now easily getting up and down the 3 flights of stairs to our own apartment. (I stayed in the other for about 10 days ‘til I could get up our stairs). I am still – more than a month later - on restricted activity. That means no lifting anything more than a gallon of milk. I can walk flat surfaces or a treadmill (< 3 m.p.h. and no incline). I take no painkillers stronger than Tylenol or Advil although I occasionally have some serious uncomfortability due to the nerve damage (sometimes a burning sensation, other times, sharp shooting pains – in any event, they pass).

For all this – and I often describe the whole experience as a nightmare, a horror – there has been something transformative about it. Transformative in a good way. I knew it even while I was going through it. I couldn’t say how then, but I think I can now.

I had to do something I typically find almost impossible. I had to – repeatedly – ask for help. I had to ask for help just to sit up at times. At first, I had to ask someone to help feed me since I couldn’t lift my arm or steady my hand. I had to have someone mop up my vomit. I had to ask for help to go to the bathroom and later to shower. I had to ask people to help me cope emotionally, psychologically – spiritually..

I thought my head might explode. It didn’t, but only because I asked for help. And help came. Came from every quarter: family, friends, professionals, strangers. It makes my head spin with gratitude even as I write this. The only way I can describe it is to say that being on the receiving end of so much help - unconditional love and generosity - made for a fundamental shift in my being. How can one remain unchanged?

I’ve had what feels like a tremendous loss. I imagine it’s pretty hard for people to understand how the loss of a breast is so transformative – but it is not just the physical loss. It is also the symbol of our women-ness. We are soft, round and full if we are whole. We are deficient if not. It is in our softness, the very seat of our femininity, where we pillow the heads of, and comfort our babies and lovers. Then mine was gone leaving behind horrible scars, nothing but psychic and physical pain in its place.

In exchange, I received a tremendous gift. A new type of softness, a new place to comfort my lover. An inner softness, roundness and fullness that is not merely symbolic but very, very real.

I pray that I can hold on to it. And when the time is right, give it away.

Wednesday, December 16, 2009

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.”


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 22nd.

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 23rd 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:

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.

Saturday, October 24, 2009

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.

Saturday, September 5, 2009

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.