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…..

This little piggy went to market…

Where to begin???  I had my last chemotherapy infusion on Aug 22nd.  I thought to myself that’s it!  It is over, now to recuperate….I was wrong.  The next day, I lost my right big toenail to infection and separation from the chemotherapy (Taxol).  My husband was in England with his sister visiting a friend, so I was alone with my 5 year old daughter through the best of times and the worst of times…  That toenail was just the nail in the coffin.  It was the twist of the knife…the salt in the wound.  It was the culmination of every little thing I had lost or been through since the start of chemotherapy and it was epic even though seemingly so insignificant.  I grieved, legitimately for 2 days before I could get my shit together.  Small jokes by friends and family were unbearable, where normally I would join in.

And the anger at my husband, who had chosen to go on vacation during my last week of chemotherapy was intense…I am still battling it.  My guy friends tell me to give him a break, he probably needed a vacation and my female friends just reinforce how much I dislike him right now.  So, then there is a hurricane Harvey and we have to hunker down, possibly evacuate, all without the husband.  A good friend stays with us to make it easier because I am exhausted from the chemo and that doesn’t disappear overnight, and I am an emotional wreck which is slowly improving.  And we are ok, but I see the news and feel an impossible weight when I think of how insignificant my toenail is compared to everything I am seeing and yet I can’t let it go…because it’s happening to me and I am all alone with a 5 year old for the first time and I should be celebrating this milestone but I’m not.  Instead, I am limping along, taking my daughter to her first day of kindergarten without her dad and going to the podiatrist who says the chemo is keeping my toe from healing and prescribes me a burn cream to help the healing and pain.  And my toe is just a physically apparent sign of the festering going on in my soul where something is dying or getting so twisted I don’t know how I will ever un-knot it.

I am reminded of a childhood rhyme…this little piggy went to the market…only this little piggy lost a nail and it is hilarious and tragic all at the same time, and I just wish I had someone who understood in my corner.  There is a woman on my cancer forum whose breast surgery is postponed due to Harvey flooding at MD Anderson and who has to go back on chemotherapy to wait for restoration and rescheduling.  I cry every time I think of her because chemo is so terrible and robs you of your self image and belief and I can’t imagine being one month out and told you have to restart this bullshit again.  And yet…I perseverate on my toe.  And not just because it hursts and wakes me up when the blanket touches it at night…but because it is my mini-me, a bald, defenseless sick little thing which is slowly healing despite the insults chemo is throwing at it…and no one cares about it but me.  No one could care less that I don’t have a toenail…but I do.  I care so much.  Why can’t I just not care so much about everything?  It would be such an easier life.  This little piggy went to market…This little piggy went home…this little piggy ate roast beef…this little piggy had none…and this little piggy went wee wee wee all the way home…where he sat and cried alone.

The roller-coaster

The first image is of losing your hair to chemotherapy and is full of anger and angst.  The second is me in my new long wig looking fine LOL.  The third is a self portrait week 6 of Taxol after starting Klonopin for anxiety.  The point is…it’s a roller-coaster of emotions.  One day you are up and the next you are down.  Hell, it can be minute to minute sometimes.  Yesterday, I was tooling along at home and forgot I had cancer…yes…it happens.  Then, I pass a mirror, and it hit me all at once, an overwhelming tsunami of emotion until I was battered by the weight of it all.  Then, once I had collected myself, I applied my make-up, drew on some eyebrows and an eyelash line and selected a wig then went to work for a few hours.

I find that work has helped keep me level…don’t get me wrong, I’m not doing anything meaningful.  I don’t see patients and I don’t operate right now, but I am interacting with the people I used to see everyday and that counts for something.  Sometimes it is awkward and uncomfortable and people ask me inappropriate questions all the time, but it is somewhat familiar and it helps keep me sane.

Ever since my diagnosis, it seems like breast cancer is popping up in everyone I know or someone they know…it is an epidemic, which of course it has been.  It has just never been so personal and the weight of it is immense.  I wonder if I will ever be able to operate on breast cancer patients again…it is my number one worry behind living to see my daughter grow up.  Cancer is a trauma, and I am just beginning to realize how extensive that trauma can be.  It can create PTSD (post traumatic stress disorder) when confronted with situations which remind you of your experience, thus the fear of breast cancer patients in the future.  I can’t imagine giving up this part of my surgical practice, but I also can’t predict how my trauma will affect me in the future.

As much as I ignored it the first few months of chemo, I have begun seeing a psychotherapist to mitigate any long lasting negative emotional effects my cancer may have on me…so far, we’ve met once and she advised me to express myself through self portraits every few weeks since I paint and draw.

IMG_0162  This is how I felt before we began…the day of the dead, fear of recurrence and death yet acceptance with simmering anger beneath.

The self portrait at the top right was one week after seeing her.  Of course, I started an anti-anxiety medication which helped, but so did talking it out with someone who was non-judgemental and insightful when I couldn’t be.  Medication may help take the edge of but grief is like a glacier, only the surface is affected and the magnitude underneath can well up at anytime.

The hardest part, is realizing I am alone and yet I am not.  It is my struggle, but I my approach affects and impacts everyone I come into contact with.  Isolation in a sea of family and friends and acquaintances.  It is a never ending swim across the Atlantic, with rain and sharks and often sunshine through the storm clouds.  It is not all pain and panic…there are beautiful moments, as well.  My child sleeping next to me at night because it brings her peace to be near me.  My mother hugging me goodbye as she leaves to take a caregiver break because I am ready to stand on my own for awhile.  The joy of a new wig.  The joy of forgetting I am bald for a few hours.  The feel of a dog licking your head as you emerge from the pool because you are bald.  Each little thing becomes so much more than a moment:  it becomes a lifetime.

 

 

Chemo

You grew on me…like a tumor…You spread through me, like malignant melanoma…  A Tim Minchin song plays loops through my fuzzy brain as the Taxol drips, 3 drops at a time, into my veins.  It’s a love song to his wife:  all about cancer and dying.  It’s like chemo…bittersweet.

My husband sits next to me, in his uncomfortable chair.  I get the recliner because I have the big “C”, but my caregiver gets the stool with a hard back and spindly arms.  It used to be my mom sitting there…during the rough stuff:  Adriamycin (the red devil) and Cytotoxan.  She would talk to me and suffer in silence when I panicked at the thought of someone spearing my chest port with a needle, even if it was numbed up first.  It was my mom, who gave her breast up to a 1 cm cancer and who lives today to hold my hand through this process she was able to avoid.  I remind myself that I still caught it earlier than most who do a self breast exam, but I am not consoled.  I should have been on top of things…I had been getting my screening mammograms since age 35, the recommended ten years earlier than my mother’s diagnosis.  Every year…up until chief residency year in general surgery…then everything just fell off the radar.  I was in a car crash and got a full body CT scan… no evidence of cancer in the breast.  Next year, late for my mammogram by 4 months…boom!  Now, I will always feel like I could have found it sooner and maybe had more options.  In reality, I will always feel like everything from the minute of diagnosis on is somehow my fault.

But back to chemo…and my fuzzy brain on day 1, as I refer to chemo day, and the way the world sways around me, almost surreal but not quite.  It is not Picasso, not Salvador Dali, but close…the sun on the horizon creating a mirage of the road enough that I do not attempt to drive home.  That is left to my caregiver for the day…now my husband, now that the drug is more forgiving and the time in the hot chair less.  He is recovering from a torn quadriceps muscle…just like Tony Parker, although my husband’s injury is one week earlier and much less enthralling than Parker’s…and he could not sit in the hard chair for hours on end while the Red Devil and Cytotoxan coursed their way through never-ending plastic tubing until reaching my bloodstream.  But the 3 hours to get pre-medications and Taxol and the interminable waiting in between are doable to him now.

Mostly, he waits with me until the Grab-N-Go (or stop and shop_cafeteria) opens it’s hot line for lunch and then he leaves to hunt down sustenance.  Normally, I stare out the window or talk to my infusion nurse during the times he is absent.   It is not long…maybe 45 minutes…but I am flustered by being alone.

I sit in my recliner, with my feet propped up, waiting for his return.  Feeling the loss of my eyelashes and eyebrows like a weight with him gone.  I am no longer distracted from their loss, and each week I feel a sense of loss in this hour that I have not felt so keenly since last session.  Even though I have drawn them on and no one seems to notice…at least not openly.  My nails have begun to peel off the nail beds:  It isn’t painful, just unsightly, and I worry that I may lose them completely before this is over.

Still, I am not sick like I was with Adriamycin and Cytotoxan.  I don’t sleep all day for days 1 through 7 or 9 or 10, only getting into the world again for a few days before the next round of drugs.  I don’t need to take Zofran every 6 hours with breakthrough Compazine to fend off the relentless waves of nausea.  I do not feel like I am slowly shutting out the world.  What I do feel, is anger…for the first time since my diagnosis 2 months ago…and I feel rage in waves…at everything.

The Taxol has released me enough that I can mourn what I have lost and what I have left.  I have lost friendships…gone overnight without a whisper to those that have died agonizing deaths, kicking and screaming into oblivion.  I have lost my hair…pretty much everywhere except my arms and a few eyelashes here and there as well as the insides of my eyebrows…go figure.  I have lost my sense of self being away from my work and my self worth as I transform before my own eyes into someone I cannot even recognize some days.  But now, my hair buds have perked up and are sprouting unruly clear twigs from my head and face and legs…which I cannot shave for fear of cutting myself while on chemo and blood thinners.  I still have tits…until September.  And I still have a ton to be grateful for… like how these are all first world problems and I could be in a hut in some developing nation not even being treated for my breast cancer…and I get it, already!?!  I should be thankful, but I’m not.  I am just scared and hurt and angry and downright wounded right now.

I have so little left to give to the caregivers who sit across from me, or my daughter, or the clerk at the gas station who can’t stop staring because I forgot to put on my wig in the heat.  I just can’t right now, but I don’t want anyone to recognize that I may be too weak.  I may be the one who doesn’t make it because I wasn’t positive enough or didn’t fight hard enough…it is all bullshit I want to yell.  It is just a disease and what happens, happens and all we can do is to press on with treatment or not.  And so I sit…watching the chemo drip into the tubing, knowing I would give up anything if it just works this one time.

The Pink Parade

4F5E4C8A-5D22-49CD-8ED4-6C66A5816E87(1)          An ocean of pink ribbons, pink clothes and shoes, mugs with catchy sayings, invites and initiatives to fund raise for research and awareness…this is just the first onslaught of the pink parade.  When I found out I had breast cancer…the pink parade welcomed me with open arms.  Four days later, I had my bye-bye boobies party…an inkling of what the parade had to offer.  My old friends and new ones gathered together to help guide me into the world of cancer with love and support and a healthy dose of sarcasm and humor.  They made me feel like I could take on the world in just a few hours.  That is the power of the pink:  it is a subculture that embraces their own and bolsters them up wherever they go because you cannot escape the parade…it is everywhere you look.  At the grocery store where a nurse is wearing a scrub top emblazoned with the pink ribbon logo and words like courage, believe and hope.  At the water park, where a woman comes to me with my chemo cap and tells me her story of recovery and survival as I stand holding my 5 year-old daughter’s hand.

Everyone has a story by the way…friends, family and strangers.  And as soon as you say I have breast cancer, you invite them in.  Most of the stories from those without cancer are about who they lost; balanced out by stories of survival from those who have been there.  It is bittersweet because you never know which category your story is going to fall into.  Roughly one third of women diagnosed with early stage breast cancer will progress to stage 4 or incurable breast cancer and no one really knows why.  That is one of the problems with the pink parade:  it is focused on early detection and prevention and mostly focusing on those women with early/treatable disease.  Stage 4 is the pink elephant in the room…looming over the party and being ignored for the sake of “staying positive” through treatment.  But it is really hard to ignore.

The pink parade helps you there.  It is hard to be negative when every pink ribbon campaign is filled with smiling faces and everyone compliments you on your positive attitude.  It is a positive feedback loop.  And it helps get you through the days where you just can’t seem to get out of bed for the overwhelming thought that you have cancer…even if you can’t see it or feel it…you have the terrible thing.  I recommend having a few friends send you weekly, or even daily texts or phone calls or letters depending on your preference, that are filled with encouraging sayings or positive thoughts.  It helps keep the elephant at bay.  Which is ironic for me since I have an elephant tapestry hanging on the wall above my headboard:  3 elephants playing ball.  I stare at that tapestry when I think about my breast cancer and I think one day that will be me…I will learn to live with my breast cancer no matter what.  Even if I am “cured”, I will never trust my body again: I will always assume every new symptom is a recurrence and one day I may be right.  But the pink parade has taught me, I can thrive no matter what.

I was so busy training and studying and working to be a surgeon, sometimes over 100 hours a week.  I put my health, my husband and my daughter in second place, most of the times they were an afterthought on a day off.  I was driven and selfish.  I still am, but now I know how to take the time to listen to my child when she is talking because I will never get that moment back.  The pink boots I walk in, the pink shirt I wear, the pink wig my husband and I posted for Who wore it better…they are all daily reminders that I have breast cancer and that I may die sooner than we all thought I would.  They are a reminder to live each day to capacity.   My husband and I accept the elephant, we just choose to also embrace the pink for our daughter and for the other women and men starting this journey every day and for the many more to come.  It isn’t easy…it is down right impossible some days, but I allow myself to grieve when I need to, as well.

IMG_0159(1)     I find the sea of pink a comforting tide at times but I am by no means a pink warrior…I am just a woman with breast cancer doing what I have to do to survive as long as I can to see my little girl grow up.  See…I’m still driven and selfish 🙂  And right now…I think I’m perfect.