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.

1 comment:

  1. The one time I had an elective surgery...general anethesia for the first time... I had all kinds of fears about not coming out of it. I emailed friends and apologized for all kinds of things that I should have said a long time ago, that I didn't want left un-resolved. We all laughted about it afterwards.... I'm glad you are doing ok, and that you have so many caring friends and family to help you through this!