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.

Complications

March 23rd, 2017

Two days after my diagnosis…my biopsy site turns red.  I don’t mean a little red.  I mean half my breast looks like a tomato.  To the emergency room I go, since it is after business hours.  The residents (doctors in training) see me and admit me to the hospital for intravenous antibiotics for cellulitis of the breast.  Given that I am a health care worker…it is assumed that I have Methicillin resistant staph aureus (MRSA) and I am started on Vancomycin ( a big gun antibiotic).  The infection clears over the next 36 hours, and I am released home on antibiotics I can take by mouth.  The problem is now everyone is scared.

What if I am more prone to infection than the general population?  What if I am always going to get an infection after a procedure?  What if I get an infection after my surgery which would delay my chemotherapy?  Big problem in my mind and in the minds of my health care team.  Just a little problem really…cellulitis…and yet a world of hurt if it reoccurred at the wrong time.  So, I decide to do neoadjuvant chemotherapy, which is not the normal chain of events.  Normally, it is surgery then chemotherapy then radiation if needed.  But I was afraid…I have cancer in at least two lymph nodes under my arm…and satellite lesions in the breast next to the primary tumor…what if it is elsewhere?  Did I want that going unchecked while I recovered from surgery for who knows how long if I had infectious complications?  I felt like I couldn’t risk it.  Be advised…this was a choice made between me and my oncologic team…it is not right for everyone.  I elected to start chemotherapy first.

But before I could get chemotherapy, I needed a port-a-cath and had to go through educational counseling about chemotherapy, which was informative but glossed over much of the negatives of chemotherapy (which we will hit on in a later entry).  So, on April 3rd, I underwent surgery to have my “port” placed.  A port can be placed in a couple different ways:  either by Interventional radiology who generally does it under conscious sedation (meaning you are awake but hopefully unaware) and local anesthesia or just local anesthestic (like lidocaine) where you don’t feel what they are doing…or your surgeon who can do it like above or elect to put you completely asleep.  I wanted to be completely asleep because I am terrified of needles, I didn’t want any chance of remembering, and I am a surgeon who prefers my own patients be asleep (it is a bias).  The port placement was perfect, and I don’t remember a thing.

April 7th, 2017

First chemotherapy with A/C , also known as cytotoxan and “The Red Devil” (Adriamycin).  It wasn’t scary…except for getting the port accessed and only because I am afraid of needles, which I may have mentioned and will most likely mention again.  The Red Devil looks like red Kool-Aid which the nurse slowly pushes into the plastic tubing connected to your port by hand over a 15 minute period.  It doesn’t hurt.  I could only tell I was getting it because the nurse was standing there talking to me.  Then, the cytotoxan was infused with a pump.  The first time, I didn’t notice anything but later on, I would get a metallic taste in my mouth during the infusion.  We will talk about chemo side effects later on, but one thing to note now…The Red Devil turns your secretions red…that means urine and tears, which my nurse told me about but was still a shock the first time I experienced it myself.

I carried on this way for two cycles of chemotherapy, until week 5, the first week of May.  My neck incision got infected, or I had a local reaction to the suture used to close it…it was painful, red and swollen…we will never know exactly what caused the problem, but I had to have my port removed.  This is a devastating event.  I went to see my friend and breast cancer nurse coordinator and my surgeon.  My surgeon agreed we should look at it closer and see if there was any pus that needed to be drained.  Problem was…the catheter was lying in the middle of the pus and had to be taken out to prevent any infection spreading into my bloodstream…and I was wide awake!  I don’t want to freak anyone out, but I was freaked out getting it removed.  I remember the moment my surgeon decided…he was silent and I said, “That bad, huh?”  and he took a deep breath and said it had to come out.  I cried.  I knew that meant I would have to rely on temporary access now, which could be hit or miss.

May 8th, 2017 (Monday)

Chemotherapy was cancelled last Friday due to my active neck site infection and my meeting for today was moved to Wednesday because today I get my semi-temporary venous access called a PICC line (peripherally inserted central catheter).  Yeah!….NOT!!!  Let me tell you about PICC lines…they suck.  Yes, they are a lifesaver and do not really hurt being placed…but they still suck!  This two or three limb plastic piece hangs out of your arm, and you have to keep it from getting caught on everything/you can’t get it wet/it freaks you out until you get used to it, which I never did because….another complication!

I had my PICC line for less than a week, which is not the norm.  Some people receive their entire chemotherapy regimen through a PICC line with no problem…we are talking months of therapy.  But not me…nope…I developed pain in my shoulder and neck.  A deep muscular pain which kept getting worse throughout the day until I could no longer tolerate it and went to the Emergency room yet again.  Turns out…I had a blood clot (Deep vein thrombosis) caused by the PICC line.  It was bad enough to cause the pain and threaten my life…I had to have the PICC line removed right away and start a blood thinning daily injection (Lovenox) to keep the blood clot from getting worse, which I would have to continue for at least 6 months.  Great thing for someone afraid of needles!!!  Every night I panic for about 20 minutes before I get my shot…which my mother or husband are nice enough to do since I can’t do it to myself.

So far…those are my complications.  Doesn’t seem like a lot when I write it down, but going through it is a different story.  Every Emergency room run, hospital admission, surgical procedure seems to amplify the complication and the stress on myself and my family.  Don’t get me wrong…complications were not what I was dealing with on a day to day basis…but they were landmarks or defining moments I felt like I could not escape.

The Diagnosis

March 21st, 2017

And so today I was diagnosed with breast cancer, just a little over a month until my 43rd birthday.  I am grateful and overwhelmed, but mostly overwhelmed by my friends and family and their show of support.  It is surreal– I imagine myself celebrating milestones — nipple tattoos, the end of chemo and it is overwhelming.  How many times have I told women as a surgeon, “We will get you through this, when all along it was them getting themselves through.  And now it’s me.  1 in 8 they say, and I’m lucky number 8.  Already it’s 6:41 pm, and I found out at 9″10 am.  Already several appointments and then an endless stream of phone calls and texts and Facebook replies.  Listening to my husband try to make sense of everything on one hand while screaming in my head when did this become about you and keeping silent because I know that isn’t fair.  Nothing’s fair.  I thought to write a poem — a farewell ode to my tits and have a bye-bye boobies party but I’m just too tired and numb at this moment.  Maybe I will — one day– but not today.  5 days until I meet my oncology team and we get started.

I suppose for posterity I should explain what went down.  Last night I found a mass, a lump, in my left breast at the 3 o’clock position/ 2 cm lateral to the nipple.  I called my mom, I called my surgeon friend, and I called my husband who was at the gym.  I knew it was cancer the moment I felt it, after all I’ve been feeling cancer in women’s breasts for awhile now.  But I had to prove it.  Today I woke at 5:38 am, after sleeping maybe 3-4 hours (I’m surprised I slept at all) and drove into the hospital to catch the breast cancer care coordinator when she came in.  I ran into several providers I knew, smiling, I said hi…didn’t say hey I think I have cancer.

I was expecting to get sent to my primary care manager for work-up but instead I got fast-tracked…1st to mammography, who sent me to ultrasound across the hall after obtaining what seemed like a 100 pictures of my breast in all angles and dimensions.  In ultrasound, I knew for sure.  I was suspicious when the mammographer was suddenly super sweet to me, but when I saw the ultrasound I just knew.  The mass was asymmetric, heterogenous with nothing smooth or solid about it — ugly.  Everything that was cancer in an ultrasound snapshot.  I heard “satellite lesions”  “abnormal axillary nodes” and my heart dropped.  I talked calmly with the radiologist — no tears and no quaver of the voice.  Biopsies:  I wasn’t leaving until I got them he said.  I have to move my neurosurgery appointment…I’m 6 weeks out from spinal fusion and disc replacements you see, so I’m in prime shape to be dealing with this news.  I go back for my biopsies, watching on ultrasound as the needle stabs the mass, my mass, over and over.  A loud click at the count of 3–five times for the mass, my mass, and 4 times for the lymph node.  I don’t cry.  I do tell the ultrasound technician to talk to me and when she freezes up, I tell her to talk about her hair, and she does which keeps me from panicking.

I don’t cry until I see my surgeon, who I’ve decided on earlier in the day and who has waited for me all this time to tell me what no one else has said until now but me: it’s cancer.  “We’ll get you through this/” he said and I cried for myself and for the women before me to whom I said the same.  I focus on the plan, the medical lingo, and that helps me get through the questioning, the family and medical history….half of which I screw up because I just can’t focus.  Finally, it’s done.  My nurse coordinator cries and keeps apologizing, I tell her it is fine and give her a hug, sharing in mutual grief and small comfort together.  Seeing her tears dries my eyes, and I am able to walk the long halls to my car to go home and start the process of reliving the day again.