The Jumping Off Place

I am writing a homework assignment.  Not an essay on a famous person/place or thing.  Not an in depth analysis of how light refracts through a prism.  But a letter to me, as if I was a friend, seeing me in a moment of vulnerability.  You see, we all have an inner blackjack dealer.  One who shuffles cards towards us at an alarming rate of speed, expecting us to pick them up and decide what our next move will be…take or stay.  But the cards…they are quick witted statements of shame.  What kind of an idiot would do that?  You’re not trying hard enough, everyone else is better than you.  You are a failure.

Perfectionism is a lie.  A lie I strive for in every breath I take.  All to avoid facing the dealer and that deck of cards that make me doubt myself.  If I am just good enough, I won’t feel bad about myself:  I will be the ultimate in happiness.  And it isn’t true.  I am happy, in moments.  In days, sometimes, when I feel fulfilled.  It is not the kind of trippingly giddy happiness I think some aspire to.  It is deep content with a warm glow beneath the surface that burns low and long.  And it comes when I least expect it.  I will be in a space where everything is clicking together, effortlessly, and utilizing all of who I am, all of my abilities with no struggle.  I experience it a lot at work, which is why I imagine I am having such a hard time accepting the me that cancer has left.

Friend,

I hope this finds you in a semblance of peace.  I have noticed you are not your usual cheerful self.  I see you are trying hard to find your way and having difficulty.  I wanted you to know, I am here for you if you need to talk, or just to not be alone while you process whatever is in your head.  You are never alone.  I know you have a lot of changes coming up in your career that you are afraid of…afraid specifically of failing and not being up to the challenge.  Give yourself time and compassion.  You have been through a ton and you are still here.  Look in the mirror, really look, and ask yourself, “What am I afraid of here?”  Or you could do that trick we used to do:  Worst case scenario:)  See…you are smiling again, although it’s okay not to smile too.  I am better for having you in my life.

 

I wrote that paragraph in one of my friend’s voices…she is a hoot, and I love her dearly.  I think I am going to borrow that voice for the time being.  It is much better than the one I have cultivated since childhood, and I could use a change in how my self-talk sounds.  I am listening to a new book:  How To Stop Feeling Like Shit by Andrea Owen.  It is funny, right on target and really uncomfortable.  It explains a lot and asks a lot of you.  It is work, but it is work on the one really important thing in my life:  me.  So, I am making it a priority.  6 hours.  That’s the time I need to devote to listening and an untold length of time applying it.  Right now, that seems like too much time to devote to delving into what makes me tick.  Stupid.  See, I caught myself that time…already having an effect.  Now, acknowledge the thought…where it lives…where it came from…the feeling surrounding it.

Marcus in second grade.  That’s where I envision the word.  It is spoken by my teacher, who is white.  Marcus is slower than the other children, in his words and motions.  He is kind to me, the new kid…the only white kid.  And now, I hurt hearing him called stupid.  He is sent to the corner to be stupid by himself.  I don’t say anything.  I shrink into myself hoping I am not stupid too.  It is the first time I can really remember the sensation of shame.

shame
/SHām/
noun
  1. a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.
    “she was hot with shame”

Well, that’s surprising to me…how deep that lives in my childhood and how much I have nurtured this feeling over the years.  How hard I cling to the fear of being sent to the corner…to be stupid all by myself.  I think I’ll take a break now.

Beneath the Surface

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I believe I am more than my scars, I do…and so does everyone else because they don’t know they exist.  They see me every day and think, I am sure, She looks fine…They may catch a hint of my tattoo but all in all, they don’t really know who I am, what I have been through, what I feel… and who could blame them.  I hide it every day, behind clothes and a smile that says I am fine.  I am at baseline most of the time, a 4-5/10 pain scale, nothing too debilitating.  Just interfering with some activities but not getting dressed or things of that nature.  Sometimes, I may need help washing my hair but no big deal, I may not be able to fasten my bra some mornings but I can ask for help.  I am a patchwork quilt that still functions.

The worst scars are beneath the surface…the ones only I can fully appreciate.  Not the ones that pull or burn…they don’t ever close or lighten…and I try to hide them from even myself.  Today, I thought about driving into the jersey wall because it would be so much easier, but I am not one for the easy route, never have been, and so I stopped to get gas instead and meandered my way home to my family.  I’ll share this with my therapist tomorrow, but for tonight, I sit in my living room surrounded by my small family, having spent the evening with a friend, thinking how lucky I am and at the same time wishing I just wouldn’t wake up tomorrow.

Every day I look at myself.  Every day I am reminded I am alive and that I have had cancer.  Every day I wonder when it will come back…I am told to mitigate my stress, to meditate/exercise/enjoy life and eat healthy because all of those things lessen my chance of recurrence.  I am told especially…don’t stress.  And that is why I want to just not wake up…because stress is my life…it is an essential element of my job…it seems unavoidable.  And I don’t want to have a recurrence…I don’t know that I can face cancer again.  And every day, I look in the mirror, straining my body against it’s restraints, to start anew until I can’t.

This isn’t something we are supposed to reveal as women…despair and anger…two emotions not well suited to the female façade apparently.  Platitudes and graciousness sit better on our lips…at least that’s what we are led to believe.  A generation of women have ended themselves over making other people content.  They had scars beneath the surface, rising like burned tattoos upon their skin until they burst releasing all the pain they could no longer bear.  Why do we nurture such simplistic masks when such rivers roil beneath the surface.  If we could be as concerned with how the tides shifted in someone as the set of their curls upon their brow…we would be a better neighbor than one who only brings a casserole over at a funeral.

Trying Not To Sink

The other day, I came home from work in tears, from pain culminating over the previous 3 weeks.  I had been working and not doing my daily 2+ hours of physical therapy exercises/lymphedema treatments and other self care activities needed to simply maintain my limited physical abilities.  I wasn’t sleeping well either.  My husband looked at me and flatly stated, “You’re doing it again.”  I thought back to December of 2016, when I ended up in the Emergency Department and then got admitted for unremitting back pain.  Pain slowly increasing since 2012 until it took me 45 minutes to shuffle to my car after a shift at work.  Pain I had minimized and dealt with by getting injections of Toradol and popping Motrin every 4 hours, resting when I could but never getting off my feet enough to recover.

I ended up with an L3-4, L4-5 disc replacement and an L5-S1 fusion through a long scar in my abdomen.  I woke up from surgery and wanted to immediately get out of bed because the excruciating pain was gone, despite having a significant incision which needed to heal for the next 6 weeks.  My pain tolerance was so high, I didn’t even notice the incision, even stopped taking pain meds for it only a few days later.  My friends and family had to keep reminding me to take it easy, and I counted the days on the calendar until I could go back to work a new woman.  And then, as you know, at my 6 week follow-up, I was released to go back to light duty and, at the same time, diagnosed with breast cancer.

During breast cancer treatments, I worked when I could.  When I physically felt up to it, and when others didn’t stand in my way either out of pity or some sense of helping me out in some way.  I was part time for two and a half years, only returning “full time” in October of 2018.  At that for only 3 weeks , since I underwent my last reconstructive surgery on October 30th, taking me immediately back out of work for another 3 months.  Then, I started a reintegration plan meant to ease me back into work physically, given my undeniable deconditioning and ongoing chronic pain/limitations.  It took longer than expected because the culmination of this program was a full week of Trauma service work…80+ hours of stressful, grueling, on your feet type work.  I barely managed to make it through the week…I didn’t shower, I didn’t do my physical therapy/lymphedema treatments…I worked and slept.  I lost 6 pounds that week.  And I was verified to go back to work full time afterwards.

And I have tried not to sink every week since then…

On weeks when I’m not on service, my time is spent running from hospital to clinic to get all my mandatory appointments completed.  Then, I focus on logging cases, additional duties, catching up on emails and whatever hot taskers have been sent my way.  I try to limit it to my profile of 40 hours/week, and most of the time I can, allowing me to accomplish maintenance therapy and self-care activities.  But when I’m on service, I begin by treading water.  Slowly, I start to sink and by the 4th day, I am drowning.  I am in crisis mode, cutting out anything that doesn’t simply get me through the day.  No therapy, no self-care, no possibility of maintaining my physical pain.  It brings out the demons that I swore I would put to rest:  denial and the drive to succeed despite causing myself physical harm.  I promised myself and my family I would never put myself in the position of my work being more important than my health, and here I was doing it again and again.  Why can’t I learn?!?

That’s pride fucking with you (Pulp Fiction)!  But it’s so much more than that…it’s fear.  Fear that everything I’ve worked for will be taken away from me if I show any vulnerability or weakness.  Sharks love the smell of blood in the water.  Surgeons are sharks, as much as we like to beg to the contrary.  We will eat our own in a heart beat.  And so I tread water, bleeding like a stuck pig, hoping no one notices and waiting for the wounds to heal.  Until I don’t.  Until I point out the blood everyone has been swimming in and ask for accommodations.  Follow my profile: 40 hours/week.  A full time job, but not full timey enough to be a full time Trauma surgeon.  And I float on my back, for the first time in months, recovering enough not to drown…

Goodbye Ovaries Hello Menopause

My breast cancer was triple positive, highly sensitive to estrogen and progesterone.  I needed to start hormone therapy right after surgery; however, Tamoxifen, the preferred drug for premenopausal women has an increased risk of causing blood clots or deep vein thrombosis (DVT).  I had been treated during chemotherapy for a DVT and Tamoxifen was not a great option.  Instead, we needed to suppress my monthly hormone cycles and start an aromatase inhibitor: Exemestane (Aromasin), which I would take for the next 10 years.

Every month I would go in for a shot where a depo pellet would be injected under the skin of my abdomen, on the right side since my back surgery had left a scar on the left.  It was supposed to keep my hormones in check for 30 days but didn’t seem to be working that great since my face would break out in acne around week two.  We decided removal of the offending ovaries to ensure a decrease in estrogen would be the prudent course, and I was scheduled for bilateral salpingooophorectomy or surgical removal of the ovaries and tubes.  I had already had my uterus out after the birth of my daughter, so no need to discuss the very real loss of fertility some women have to forge through with a cancer diagnosis.

I had an uncomplicated, for a change, robotic removal of the last remaining feminine bits and kept on trucking with my Aromasin.  Easy breezy I thought.  I thought wrong.  No one really talks about menopause hitting you like a truck overnight, with the night sweats, the hormone shifts, the dry skin, the insomnia…and the vaginal atrophy.  That was the real surprise…the loss of any remaining sexual desire because it hurts.  It hurts to wipe after peeing, with microtears in the thinning tissue, blood on the paper letting you know you are injured as if the burning pain lingering for hours was not enough.  The turning away and denial of sexual attention from your partner because you can’t bear to be touched in the one place left without a scar.

I tried Replens, a vaginal moisturizer, every morning without relief.  I tried Vaginal rejuvenation lazer with temporary and partial symptom control at the hefty out of pocket costs associated with a novel therapy not yet covered by insurance.  Finally, I begged for a lasting solution:  vaginal estrogen.  A small tablet, a low dose, delivered right into the vaginal canal to provide local estrogen for the tissues responding to the lack of it by withering away.  I used it every day for 2 weeks followed by one insertion every 3 days for maintenance.  It took a month of treatment, and I got my miracle.  I was pain free, finally, in at least that respect.  I traded a small risk of recurrence for quality of life…a choice that many of us with cancer make on a larger scale when shunning further treatments which could prolong our lives in the face of horrible side effects.

Quality versus quantity.  It is the unspoken rule in medicine that we fight to save lives.  As a Trauma surgeon, I often err on the side of heroic interventions to save a life at all costs.  Real, tangible costs of resources that might save multiple other lives, I choose to use on one.  The one in front of me, in need, who might not live in the end, one who may never regain consciousness or ever interact with the world again.  And I do it because I believe they would want me to and that I am doing the right thing.  Sometimes, I stop because further care is futile, but not when I think there’s a chance.  Cancer is like that.  You get the diagnosis and think, I am going to do everything I need to, everything I can, to beat this disease.  All the treatments available.  And you don’t think about the outcomes other than not having cancer anymore.

And you go through the chemotherapy, and the surgeries, and the radiation, and the hormone therapy that goes on for years beyond the diagnosis or whatever combination of the above you need to be cancer free.  And it hurts you.  It becomes baggage you can’t lay down, wearing on you every day in a way no one really prepares you for.  Every so often, the bag opens and some surprise item breaks loose, and you have to learn to carry it anew…awkwardly incorporating it into your life.  Sometimes, the items is so corrosive, it erodes the quality of your days.  You begin to question your previous decisions and , in the end, to imagine if the cancer comes back…will I do it all again?  It’s a personal decision, weighing one’s life and the measure of what one can tolerate during it.

Quantity versus quality.  I ponder…at what point will I break from the mindset of survive at all costs in my own life?  I think of my daughter and husband, and I think I will struggle with recurrence because I am so selfish I want to spend yet another breath with them that I will put them through every pain I have to suffer in order to do that.  I almost feel like I should apologize to them ahead of time.  Isn’t that a strange thought to have.  It makes me emotional to realize I would put them and myself through everything again and so much more because I can not bear to lose them.  Isn’t desire a horrible beast to tame into submission.  I want to be in awe of those women and men who have said I have had enough.  Instead, I whine about my joint pain, my feet on fire and my patchwork body.  And I take my pills like a good little girl, inflicting these complaints upon myself because the alternative does not fit with my saving life at all costs mentality.  And I cross my fingers, and hope the day never comes when I have to choose.

Down the Rabbit Hole

I went back to work after the removal of my left tissue expander.  I jumped right back in full force, taking on responsibilities that I didn’t need or really want.  In the morning I would be a physician and in the afternoon a patient on more days then I can even remember.  Things began to blur…and I couldn’t escape the hospital where I worked and was worked on.

I started having panic attacks.  They got so bad, I would need to physically leave the building to breathe again.  At first, it was just one here and there, but after awhile, it was happening every day.  I was disfigured, undergoing Herceptin therapy, dealing with chronic pain from chemo and radiation side effects, taking Ultram daily to take the edge off the pain and trying to be the hard charger I was Before Cancer.  And I was failing.  I was eternally fatigued and falling short of the expectations I had set for myself.  Until, one day I was seeing a patient with a colleague and it all became too overwhelming.

I didn’t quite race, but my long strides ate up the path in front of me, aiming towards the exit.  I saw my boss who asked if I was alright.  And I yelled, as my feet never broke stride, “I am not alright!  I am not alright!”.  Tears were streaming down my face, and I knew I couldn’t go back anytime soon.  I reached out for help overnight, and the next day, I was pulled back together and followed up with my psychiatrist.  (yes…doctors need help too)  He set up a meeting inclusive of my commander, my first shirt, my husband and me.  At this point, I had removed myself from patient care, because I felt I was impaired.  I always put the patient first, no matter the terror of closing the door on my career as a military surgeon.

My psychiatrist and commander did not agree with my decision, with my psychiatrist describing me as a truant teenager who just needed some adult supervision to do my job.  I was told I would go back to work despite my misgivings.  It didn’t last long.  One day, I think.  I refused to see patients, and in short order I lost my shit.  Later, we would find out that I have a significant drug-gene interaction with Ultram…one that causes psychosis.  Overnight, I became a walking amoeba.  I was no longer me in any sense of the word.  Turns out my psychiatrist was wrong…I wasn’t malingering.  Fucking asshat.  I had severe PTSD, or post traumatic stress disorder.

It took quite awhile, with intense intervention and learning self care methods to pull me out of the rabbit hole I had fallen into and become the version of myself I am today.   Before this, all I did was work, and when I wasn’t at work, I was perseverating about work.  Some would say I was a workaholic to the detriment of my personal relationships and my own health.  Looking back, I would agree with them.  With treatment, I moved towards more balance, with daily yoga/ meditation/ tai chi and journaling.  I delved into the sea of my childhood trauma all over again, so that we could work on the mountain of my adult trauma: cancer and all the baggage it brings.

In the end, I crawled out stronger than when I went off the grid.  I stood up and started to reclaim my life.  I was no longer afraid because the other shoe had already dropped.  I started to prepare for the inevitable discharge from the military.  I faced the illusion of my marriage head on.  I grew physically stronger as time passed.  I reviewed my priorities and goals and started living in the moment instead of in the past.  And then, the universe shifted…the military returned me to duty/  my husband reclaimed the attributes I fell in love with in the beginning/ and I realized I didn’t have to settle…I could have it all again.  I just had to open my mind and heart to the possibility then work for it.

Reconstruction Failure

I don’t agree that every woman needs to reconstruct, but I had chosen to do it and held at least low expectations of success given all my previous complications.  Wasn’t I due a break?  I had immediate tissue expanders placed at the time of mastectomies and did a relatively slow expansion program, taking several weeks in between moderate fluid fills.  And yet it didn’t matter in the end…radiation had it’s way.

And so…after several expansions, in early 2018, the pectoralis muscle,under which my tissue expander lived, began to tear off the chest wall from all the cell death caused by radiation.  And because of the inevitable contraction of tissues after all that damage.  Eventually, my plastic surgeon and I gave in and removed the left tissue expander, which caused a significant cosmetic deformity.  It also cost a huge psychological toll.  I was embarrassed to be seen naked…hell, I didn’t like to look at me, why would anyone else?  And yet, I felt whole at times.  At times, I felt my non-existent nipple itch and would have to look down to remind myself it wasn’t there…I was reminded of the amputees I operated on and their phantom limbs…was there such a thing as phantom nipple?!?  I started taking Neurontin, a medication to alleviate nerve pain and symptoms, but the only thing that seemed to help was actually looking at the cave which was my left chest.

I began to doubt my decisions in my care…I had so many complications, why risk more for a set of tits?  At least those were the words I heard when my husband’s lips moved, even if he didn’t say them out loud.  He wanted me to survive he said…he didn’t care he said, but still I doubted.  He was always a breast man, and I wanted him to still want me in all my pain and suffering.  I wanted to feel whole in his eyes, even though I wan’t whole in my head.   Not by a long shot.  I was lost and in pieces.  A shadow of a surgeon only seen at the peak of the sun’s rays because the rest of the time I was cowering inside.  And there it was in his eyes…I was everything I feared…less than I had been…dying inside, despite the treatments.

And what was a breast anyway?  Plenty of the women I had met did not reconstruct.  They seemed happier and stronger than me in every way.  And still I yearned for completion.  Maybe it would salvage a strained marriage?  Maybe my daughter would no longer innocently laugh at my ravaged chest.  And maybe, I would feel like I wasn’t missing so much in the long run?  I didn’t know for sure; however, I wanted to be rid of the daily reminder of loss and vulnerability that my concavity represented in the mirror every day.

 

Herceptin

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So, when I started on this road, the pathology results were equivocal for Her2 on 6 different tests.  Some doctors would treat based on that up front along with my chemotherapy before surgery and some would wait to see what final pathology says after surgery, or not treat at all.  I was of the mind that I should be treated up front but my medical oncologist was of the mind I should not be treated so we reached a drug deal of sorts:  I would have my final surgical specimen retested and if it was still coming back as intermediate/equivocal…I would get treatment.

Come to find out…I should have pushed harder up front.  All of the disease that was in my armpit lymph nodes and residual in my breast was Her2 positive.  I can’t help but think I would have been “no evidence of disease” after chemotherapy if I had been treated for Her2 at the same time, but we don’t get to go back and change things.  Thus, in October of 2017, I started my treatment for Her2 positive breast cancer.  The treatment consisted of a combination of Herceptin (an immunotherapy which helps your own immune system attack the cancer) and Perjeta (another chemotherapy).

I remember my oncologist looked at me, smiling, and said, “No one has side effects from Herceptin so we’re not even going to talk about them,” right before he ambled off.  I took my premedications (Zantac, benadryl and steroids) just in case and waited 45 minutes to start my infusion.  We went with Perjeta first and everything went smoothly.  Waited an hour and started the Herceptin…within 15 minutes, I was flushed and starting to have leg cramps on the right side.  It felt like I couldn’t get comfortable, so I kept standing up and sitting down, and then it spread to the left calf.  My arms also felt funny.  I called my nurse over, and she seemed confused and concerned.  She just kept saying no one ever has a reaction.  And then, the pain set in…my oncologist was by the bedside now, and I was yelling about the pain.  Not quite screaming, I don’t think, but it’s hard to know when you’re in that much pain.  And everyone is just staring at me…I look down at my arms and legs…there is a purple lace pattern all over my skin, which is otherwise very pale…the signs of capillary thrombosis or tiny blood clots in all of the smallest vessels of my skin.  I am having a severe reaction…

Orders for IV Benadryl and Steroids and a slew of other things I can’t remember…and finally, 20 minutes later, I am at least out of pain if not comfortable.  The decision is made…now I will always need a driver in case this happens again and because we need to heavily premedicate me to prevent it.  I have become paranoid from the effect of the Herceptin on my brain during this time, and I feel this is all a conspiracy and maybe I imagined the whole thing.  My mottled skin informs me differently.

The next infusion, 3 weeks later, I am prepared…I bring a driver and friend to sit with me and then take me home.  We have doubled up on the steroids and benadryl dosing and added ativan for anxiety.  Again, we do the Perjeta first and everything is fine…then…Herceptin…flushing and cramps and …shut it down!  We wait 15 minutes then restart at a slower rate…this goes on and off for the next 9 hours, but we finally get the infusion finished.

This goes on again the next week, although we switch the order of the Herceptin and Perjeta to rule out a side effect from the Perjeta being the cause…it isn’t the Perjeta.  And now I am getting worried.  If I can’t get my Her2 treatment, I might as well consider myself untreated given the residual disease which had invaded my lymphovascular system under the arm and was likely elsewhere by the time we started treatments for it.  I reached out to a Facebook group I belong to and told them what was going on…

Not 20 minutes later, I received an unexpected response…from the husband of a member who had recently died of Her2 metastatic disease.  He told me how she had gone through similar reactions and how nothing helped until they added Singulair to her premedications.  Singulair?  A benign enough drug given what I was already trying…so I broached the subject with my oncologist and we decided to give it a go.  AND IT WORKED!  No more flushing, no more pain…it was like they said…no reaction at all.  And for the first time, I believed I had a shot.

Radiation

IMG_0420     Sorry for the graphic picture, but this was the beginning of my skin breakdown from radiation at the end of November 2018, 4 weeks into radiation treatments.  Every phase of cancer therapy has it’s own challenges and radiation therapy was no different.  30 treatments…translating into 30+ days, Monday thru Friday, not including Federal Holidays.  Each treatment lasting less than 30 minutes from start to finish.  I have no paintings from this time because I was not inspired by this phase of treatment…it was all so sterile and like an assembly line…

It started with a CT scan to map out where the radiation would be administered as they fit you into a mold of your body with your arms up and head turned away from the radiation field…and then 3 small blue tattoos…one on each side of my chest and one over my non-existent left breast.  How strange for someone with several “real” tattoos that these should be so annoying…And then, the next day…walk in, check in, called back, remove top/please wear separate bottom and top to expedite the treatments, lay on the table in your body mold where we will adjust you to our specifications…never really speaking to you that much, just to each other in code and occasionally, near the end of treatment, once your skin is showing wear and tear…a simple question as to whether the marking tape hurts.

But that isn’t fair, I guess…one of the technicians did engage…did speak to me like a person instead of like an object to be treated, in silence, with the whir of the machine the only sound as it moved from right to left to underneath me.  A simple, “Okay we are going to get started,” the only sound after being adjusted to the specifications.  20 minutes of silence broken only by the movements of the machine and the technician who would come in at the halfway point to physically adjust the table I was on to the specifications for the next set of computer generated specifications.  This was the least human part of cancer treatment.

6 days after my last day of radiation therapy, my skin burns were bad enough that I went to a general surgery wound care clinic for treatment, as the constant “Just put this lotion on it” wasn’t cutting it anymore.  4 months later and I still have a sore spot behind my left armpit…I smiled at the end, but I really felt like just another hand-print on a wall…

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Red Breast Syndrome

Things will eventually get better in this story line; however, this was not the time.  As I said in my last entry…cellulitis of the left breast and admission to the hospital…again…for Intravenous antibiotics.  It seemed like the complications just wouldn’t end and this was just one more I would need to deal with.  Only, the antibiotics weren’t working.  My breast was still red, and now we were talking about removing the tissue expander and giving up on implant reconstruction for that side.  I was scared…my husband was livid.  Somehow, in making the choice to reconstruct, he felt I had put my life and my ongoing sanity/ability to cope in danger.

I felt that I had taken into account both of our preferences and had met the majority of them…but apparently I was being selfish wanting to reconstruct.  I wanted to be as close to “normal” as possible (which is a big laugh I will share with you in a future post) so that our lives could go back to being as “normal” as possible.  I felt like I had pretty much lost my husband over the months of treatment, and I wanted him back.  I thought having a semblance of breasts would help in that regard, and here I was about to loose one.  I made the mistake of bringing it to my husband’s attention and all hell exploded.  We got in a screaming match, during which he finally said the one thing that ironically would have allowed me to make the decision not to do reconstruction.  He screamed something along the lines of ‘I don’t care if you have breasts, I don’t care if we never have sex again…I just want you alive!’

I am paraphrasing, it has been awhile since my last post, and my mind is not as sharp as it once was, but you get the idea.  Here I was, having made up my mind based on a unicorn…a mythical being that was only in my head.  And now, I would face more surgery because of it.  But then a strange thing happened.

The night before I was to go into surgery, my right breast turned red too.  I didn’t have a fever, my white blood cell count was normal, I wasn’t showing any signs of being sick at all.  And yet, now both of my breasts looked like they had a severe case of cellulitis…mostly on the bottom halves.  I called my plastic surgeon and we both agreed not to do the surgery and to continue oral antibiotics for the weekend.  It just wasn’t adding up, and we weren’t willing to give up that easy.  Then came the ballsy decision…the plastic surgeon thought I might have red breast syndrome (a reaction to the Alloderm used to hold the bottom half of the tissue expander in place).  I read everything I could find, which wasn’t much and thought if it’s like an allergic reaction, maybe an antihistamine or an allergy pill would help make the diagnosis.  I stopped the antibiotics and took 2 bendryl and a Claritin-D tab.  An hour later, the redness was much improved.  I of course, had been snapping and sending pictures of my chest to my plastic surgeon, who agreed we could avoid surgery now.  She started me on a steroid pack and kept the benadryl and Claritin-D going for a week…the redness completely cleared up and I kept my tissue expanders in place.

While the whole experience made me appreciate how lucky I had been, the close call brought our marriage to the breaking point where we finally had to talk things out again.  We both agreed that “Home” felt like being in isolation; as a matter of fact, it was the only painting I did that my husband identified with.  This was an intense period of darkness for both of us, and it was a struggle to find the light again.  Friends and family helped draw us out of ourselves, until we could find each other again, even if tentatively at first.  It helped me most to know my husband wanted me…whole or in pieces…as long as I was still here.  More than even ‘I love you’, I needed to hear that.  Now, I just had to find personal acceptance…

A Year Without Nipples

After chemotherapy for me, usually before any additional treatment for everyone else…there is the dreaded decision of all decisions…and its so personal and complex:  lumpectomy with radiation or mastectomy, and if mastectomy then unilateral or bilateral?  Reconstruction or not: immediate versus delayed?   Use my own body as the reconstructive material or implants?  Saline or silicone implants?  Because I am a surgeon and have performed these operations along with many others, I have a morbid bank of solutions in my head for every operation I personally may undergo.  For me, the diagnosis of breast cancer was a quick decision tree to bilateral mastectomy with immediate reconstruction with silicone implants (under the pectoralis muscles; although above them is gaining in popularity).  And that is how I approached my surgery:  very analytical and filled with medical jargon to separate me from the impending emotional crash that had I been honest with myself, was inevitable.

On September 14th, I had both my breasts removed and a few lymph nodes removed from under my arm to check for the spread of cancer (sentinel lymph node biopsy).  I also had my tissue expanders placed at this initial surgery.  My plastic surgeon and I had discussed immediate implant placement, but I was going to have radiation and was a high infection risk already, so tissue expanders were my best bet.  I woke up with the expected two drains and a surgical bra filled with padding.  I was afraid to look myself, but did peek when the surgical resident came for my post-operative wound check…I don’t remember if I saw anything.  What I do remember, is I had a room full of friends and when my husband walked in with our daughter, he asked if I had anything to get off my chest.  Whether it was the anesthesia, the pain meds, the adrenaline or a combination…he and I laughed probably a little too much given the situation while everyone else fell into a quiet hush.  At least it kept me from crying.

The next morning, we went home and that was that…only it wasn’t.  I looked in the mirror every morning, every night and whenever I had to empty my drains.  There I was, a chemo bloated shell of myself with peach fuzz for hair and black stitches across my chest where my breasts used to be.  I felt horrific…I felt mutilated…and then I had a friend come to visit.  A friend also with breast cancer and going through chemotherapy before surgery.  And somehow…I worked up the courage to let her see.  And her acceptance, in words and facial expressions, allowed me to accept myself in that moment.  Later that night, I would cry myself to sleep for all that I had lost.

I thought I was handling it, and then came the call:  one of the lymph nodes from under my arm had active cancer in it, despite the chemotherapy.  Not only was it active, it was aggressive and had broken through the walls of the lymph nodes to form twin tumors hugging the full lymph node and the words extracapsular extension and lymphovascular invasion floated through the phone.  A formal axillary dissection was in my future and we did it the very next Monday, September 25th.  We spent the four days between getting the pathology results and surgery perseverating on how long I might have to live and crying a lot.  The only positive was that my surgical drains were removed during surgery, and I only woke up with one this time.

Pathology was not what I expected:  a total of 55 lymph nodes removed during both surgeries (hell I didn’t even know you had that many under your arm) and 3 were positive for cancer with spread outside the lymph node into the surrounding fat.  3 out of 55 seems pretty reasonable except this is after chemotherapy…there shouldn’t be any.  So now comes the question of more chemotherapy (different type) or hormonal therapy or a combination or what?  Turns out there was a lot of discussion about this very question behind closed doors and at tumor board to which I was not privy.  Then…we caught a break…my Her2 status, which had been equivocal all 3 times it was checked, came back positive in the lymph node cancer.  That meant we had a targeted agent…Herceptin…to attempt to contain if not eradicate any cancer cells which may have spread around my body.  In addition to this, my cancer was strongly estrogen and progesterone positive, so we could use hormonal therapy too.  Being triple positive should have helped me calm down, but I couldn’t help myself…I started planning for a life for my daughter and husband which wouldn’t include me and what that would look like.  Then, I started arguing with my husband about how everything needed to change, when change was the last thing my family needed at the moment.

I woke up, I emptied my drain, I bathed and carefully patted myself dry, dressed and made it through another day on the outside, all the while screaming bloody murder on the inside.  I felt isolated and alone in my own home and body, despite all my friends and daily calls with my mother.  I did this day after day, until the drain was removed when it clotted off.  And then I did everything but empty my drain, going through life numb, like my breast mounds and underarm.

And then, true to form, my left breast mound turned bright red…cellulitis and another hospital admission for IV antibiotics.  But that’s a story for another day…..