A Tsunami of Emotion & the Rogue Wave

Grief comes in waves.

Losing someone close is not a clean-cut mourning process with a timeline. Anniversaries, songs, places, even smells, can trigger random memories that spur waves of sentiment months and even years after the original goodbye. There is the initial tsunami-sized emotional destruction and then continual reminders of the loss that ebb and flow as the tides.

Occasionally these emotional aftershocks are even more severe and more poignant than the initial grief.

And I got smacked by a rouge wave a few weeks ago.

Cancer = Grief Even When you Survive

A cancer diagnosis, treatment and recovery resembles that very same cycle of grief. We’ve all lost something: a body part, a physical functionality, an innocent ignorance (or an ignorant innocence!).  In my case, the grief surrounding the loss of my breasts pales in comparison to the grief involved in the loss of the it-can’t-happen-to-me-ignorant-peace-of-mind that accompanies youth and a lifetime of good living, good health and good luck.

Where’s the Damn Finish Line?

Ten days after surgery number four, following yet another recovery plan to the letter and eagerly anticipating the celebration of another birthday, I was physically coming right along but emotionally knocked flat on my arse.

Perhaps I set myself up for it. I expected this final surgery to be a breeze, I looked forward to being ‘done’ with cancer and all its trimmings.

Logically I know this doesn’t happen. I’ve written those very words before. You don’t package diagnosis and treatment into a nice little box and label it Cancer Memories. The process is permanently altering in many ways.

Yet my thoughts were still trending toward, “Once the exchange surgery happens, I can get back to normal.” Yep, I said the word “normal” to myself. 

Oops.

This last surgery was reactionary to remove my leaky expander and while definitely desired, it was comparatively unplanned.  My recovery plan was hastily put together and resembled my January plan in many ways. I felt as if I already had this t-shirt and was not really in need of another.

Hindsight has such clarity. I realize now that four surgeries in 10 months is a helluva lot for any single body to handle. Physically and emotionally. I lost things tangible and intangible. But I needed to be reminded that everything I lost was real and it’s okay to grieve. I also believe I forgot that a recovery in the middle of a recovery may be physically similar but emotionally more complicated.

Birthdays: A Celebration or a Lead Up?

And then there was the issue of my birthday. My 41^st birthday.

Part of me, a large part, was just glad to have made it to another birthday. I am attuned to the fact those are not always givens and, in the past year, have lost several people who will never reach their 41^st birthday thanks to metastatic cancer. But another part of me, a smaller but very real part, didn’t want to upset the proverbial apple cart with too much pomp and circumstance.

You could call me superstitious and you’d probably be correct, but the anxiety surrounding a repeat of last year’s month long birthday celebration that was capped off with a cancer diagnosis was not something I was looking forward to.

And the Tide Flows Out Again

In the thirty-seven days since my last surgery, I have laughed and cried. I have berated myself for ‘going backwards’ and also celebrated my successes.

In other words, I have lived every moment of what I felt.

I feel centered now. I feel strong today. And while I not-so-secretly feel as if this ‘journey’ should be over, I realize that two steps forward may occasionally be accompanied by a single step back.

And, by anyone’s measure, this is still progress.

My Very Own Final Four - Winning all the Brackets

From excisional biopsy to today has been 10 months.

Four surgeries in ten months and this is the final, making this my very own Final Four amid the March Madness!

As has become customary, I'm putting out my post-operative goals so I can visualize success and feel a sense of accountability to make them all happen.

Reconstruction is Not for Sissies - Fret Happens

I am 5’3”.

I weigh 125 pounds.

And, over the past eight weeks, I have had over 800ccs of saline injected into the tissue expander that is reconstructing my left breast.

If you are fast with math facts and volume amounts, your eyes have probably popped out of your head because the left side of my chest should resemble an enormous cantaloupe.

But it doesn’t. 

Actually my left expander is leaking and we’ve been overfilling the defective device twice a week to try and maintain skin stretch. Instead of another surgery to replace the flawed left expander and then one more months down the line to perform the exchange surgery for both breasts, we are accelerating my final procedure.

Why do I say ‘we’ when my job as a patient is to keep my head on straight, show up to appointments, lie still during fills, follow my doctor’s instructions and well, just be PATIENT.

Because I am not that kind of patient. I am an empowered, if impatient, patient.

And because I truly feel the surgical path we’ve chosen was a team decision between my doctor, my family and myself. It would not have worked for everyone. I suppose the upside of breast cancer at age 40 is my skin is still supple enough to stretch well and I heal quickly.

A complication was not part of my plan and has been, without a doubt, the most difficult part of reconstruction. The literal and figurative ups and downs of going from even to lopsided to over-filled to even is difficult. But I remind myself it isn’t more cancer. It’s just a pain in the arse.

And a pain in the head.

I become self-conscious in a way that has never been me. After a fill, I dress normally and appropriate for our warm Northern California weather. As my expander deflates, I don baggy sweatshirts making my entire shape shapeless. On the really rough days I question the soundness of my decision to reconstruct in the first place. And then I become irritated with myself that, after everything that has happened over the past year, I am the least bit concerned with my own aesthetic. 

The cycle is vicious and while, on an intellectual level, I refute the value of fretting - fret happens.

Finding other women who had walked my path helped me get through some of the early 'dark days' after diagnosis. Conversely, I've seen very little with regard to personal stories on leaky expanders and at times have felt isolated in my frustration. 

And then Dr. H puts in another 100ccs and I’m even.

And I’m happy.

And I’m just counting down the days until March 24^th. (Time to construct another Recovery Plan)

Early on in my diagnosis and treatment, I remember someone saying, “Reconstruction is not for sissies.”

I unabashedly concur.

In fact, I may even need that on a t-shirt!

New Plan: The Good, The Bad & The Ugly

We have a new plan. 

And, as with all plans, there are upsides and downsides.

A weekend without any fill appointments confirmed that my left expander is indeed leaking saline. Although I reached out far and wide, I only connected with a few individuals who have experienced a similar issue and their choices were to replace and continue the process. One woman was close enough to her exchange surgery that she endured a few extra fills prior to exchange.

Still four months out from the minimum window for exchange surgery, feeling somewhat stuck and definitely shrunken, I made an emergency appointment for Tuesday February 25^th. Dr. H confirmed the leak and filled the left side back to status quo.

As we discussed potential next steps, I felt myself gravitating toward the let’s-just-get-this-over-with decision to replace the offending expander. I asked if the procedure could be conducted under a local anesthesia as opposed to my being completely out. The answer was, “Well, it could be but I don’t want to do it that way.”

Even after I promised I wouldn’t sing too loudly in the O.R., Dr. H refused to perform a replacement surgery with me semi-conscious. Before I could make any other commitments I wouldn’t be able to stick too, he offered up an additional solution which stopped my mouth from chattering.

“If I go in to replace the expander and everything looks good, I could just put the implant in.”

I verbally (and probably physically) jumped at the option.

Accelerate the exchange surgery? 

Absolutely. 

Yes, please. 

Sign me up!

THE GOOD:

Contrary to the original plan, I will not be waiting until sometime in the middle of summer for my exchange surgery. I have been right-sized and now will have regular fills on the left side to maintain the skin stretch.

My doctor verified the acceleration of the exchange timeline would not compromise my health or the quality of my results. And then I fact checked with a few studies, so we now have a plan.

Actually, I should rename this section THE FANTASTIC, because THE GOOD barely scratches the surface of my feelings.

THE BAD:

No plan is perfect. In order to make this new plan a reality, we must keep the left side expanded. In order to maintain expansion, I am having continuous fills.

In other words, I have twice a week visits that begin with a deflated left breast and end with an over-expanded left breast.  

As the breast expander loses saline, it wiggles around a little and is less-than-comfortable but certainly not unbearable.

The pain in the arse factor is high and I will have another physical starting over point.

All-in-all, THE GOOD far outweighs THE BAD.

THE UGLY:

I embarked on reconstruction because, despite my best efforts, I was unhappy with the asymmetry of my body. I spent months in a whirlpool of self-reflection and analysis in order to choose a path that was just right for me.

Having a complication, or a hiccup, as I now refer to my leaky expander issue, sometimes leaves me questioning the wisdom of my decision to pursue reconstruction. In a rough emotional moment, I wonder if the universe isn’t somehow saying, “Bad idea, Stace.”

In these moments my husband reminds me that immediately following my January surgery, with only 100cc in both expanders, I was nothing less than ecstatic. For me, the size of my new breasts was completely inconsequential. I had two that matched and I felt whole again.

So THE UGLY is the doubt. 

THE UGLY is the unfounded, yet still very real, fear that I won’t get to ‘reconstructed’. 

THE UGLY is questioning my choice and riding the ups and downs that go along with that second-guessing.

Rather than being able to look beyond scars and discomfort to enjoy my new found symmetry, I find myself on an emotional roller coaster of feeling whole, less than whole and worried about never being whole that directly corresponds to the saline leaking out of my tissue expander and being replaced twice a week.

As I go in for multiple fills on my left side, I work through that accelerated process of happiness, fear and grief.

I go from symmetrical to asymmetrical. And back again.

I go from pain-free to fairly-uncomfortable. And back again.

And I am decidedly not feeling whole.

Yet.

As I type, I know that one day soon, things will be different. Things will be better.

I will feel whole.

That knowledge, forgotten and relearned in a perpetual loop a couple of times a week, helps me see beyond THE GOOD and THE BAD. That knowledge helps me see THE BEAUTY beyond THE UGLY.

THE BEAUTY is, with a little emotional fortitude, a whole lotta reminders and a smidgen of patience I can begin to imagine that wholeness right now.

Springing a Leak was Not in my Recovery Plan

Shocked.

Briefly devastated.

Ticked off.

And it’s all a little surreal.

For every single minute of the almost five weeks since my latest surgery*, I have been thrilled with the two slowly growing mounds just under my pectoral wall. Prior to surgery, I built myself an intense physical recovery regimen and followed it to the letter. Physical recovery from reconstruction has been far more difficult but every moment post-reconstruction has been infinitely emotionally preferable to any moment in time during the active phase of my cancer treatment.

But this morning was indeed challenging.

For the past couple of weeks, I have been diligently visiting the plastic surgeon for 50ml fills in both expanders. And every week, I literally dance out of the office feeling decidedly more whole. Determining your own breast size at the age of 40 completely flips the puberty model but beats the hell out of losing body parts to cancer.

I don’t want big breasts; I’ve never had big breasts; I want to fit in my old bras; I just want to feel whole.

And I am starting to.

But last week I started noticing that during the seven days between fills, my left side appeared to shrink a bit. My left side had delayed reconstruction and the right side reconstruction was immediate, so I attributed the perceived shrinkage to a difference in tissue response.

This morning, during a regular fill appointment, my plastic surgeon asked me if I noticed my left side getting smaller between fills and his question brought one of my biggest reconstruction concerns to the forefront.

It appears as if my left side expander may have a slow leak. And hearing that potential reality brought me to tears. Springing a leak was definitely not in my recovery plan.

As with any situation, I do have options:

• I could immediately swap out expanders in a short surgery.
• I could continue to visit the office for weekly fills and we could overfill the left side regularly to keep it even for the next several months until exchange surgery.
• I could curl up in a little ball and cry that everything has not gone my way.

We filled my left side with 100ml of saline while the right side was dosed it’s typical 50ml. I am now visually even again and I’ll go back next week to evaluate next steps.

In the meantime, I’ve decided to spend some time hearing from others who have been through the not-unheard-of-but-not-terribly-common issue of expander leakage. 

Anyone? Please let me hear from you. What did you do? How did it work out?

*On January 17, 2014, I had a right side mastectomy and began bilateral reconstruction for implants. My left breast (along with a couple of IDC tumors and a couple of lymph nodes) was removed on June 17, 2013.

A Year Ago Today & Looking Toward Tomorrow

Exactly one year ago today, I was locked in a conference room with my coworkers divvying up a slew of work-related responsibilities before I took, what I thought would be, a brief leave of absence from the fast-paced, professional world that is high tech in Silicon Valley. Less than a month prior, my mother had been diagnosed with breast cancer and she was about to embark on another surgery and begin her regimen of chemotherapy and radiation. Since over 1600 miles separates us geographically, I knew I would need more than work-from-home flexibility to help support her and continue to raise my own family. My work family understood that her diagnosis was a polarizing event in my life and understood my decision was one of prioritization.  Although I thrive in the everything-is-a-priority-because-it’s-all—mission-critical-and-we’re-all-Type-A environment, my career was the first thing to take a backseat.

Following the start of my leave, I flew back and forth to visit whenever I could. I spent hours upon hours educating myself on breast cancer treatments and outcomes, treatment side effects, support organizations and research. And then I spent hours upon hours quelling the concerns of my father, my brother and my children while my husband tried to quell mine.

I responded to coworkers’ questions related to my return to work with a vague, “I’ll reassess when things even out,” knowing that I had up to a year to focus on the health of my mother.

Barely three months into my leave of absence and frequent flyer caregiving role (and one month after my 40^th birthday), I received my own breast cancer diagnosis.

From caregiver to patient instantaneously.

This time there was nothing to toss off the boat but there was still plenty to learn.

For over eight months, I’ve documented my experiences via blog. Initially I leveraged the blog as a method of communicating with friends and family on a larger scale. As the physical treatments ended and the mental distress remained, I used the blog as a way to document my fears, plan my recovery and hold myself accountable to focus on the positive.

A year later, my mother’s treatment is going well. Although she is still receiving Herceptin via chest port every three weeks, her ‘heavy’ chemo course ended and she has regained her thick head of hair and sassy attitude.

I am now almost one month into recovery from bilateral reconstruction and feeling fantastic and whole, if still slightly frustrated with my inability to lift any significant amount of weight.

Despite the overwhelming support we have both received, I have now spent enough time participating in the larger cancer community to realize that, just like people, all cancers are not created, treated or researched alike. And the inequities are alarming.

In November we lost a friend to mantle cell lymphoma, ironically on the day Ibrutinib was approved by the FDA. In December, a dear friend was placed on home hospice 18 months after her Stage IV lung cancer diagnosis. She died nine days before my uncle died of the same disease in mid-January. And, most recently, the death of an amazing young women from metastatic breast cancer rocked my online support community.

The physical and emotional highs and lows of the past 365 days are the most extreme I’ve ever experienced and they have taken my husband and two children along for an emotional ride of their own.

Today I reflected on the past year as I belabored the decision whether to return to a company that truly treats me like family, to request a continuation of my leave or to resign.

The decision has been difficult.

The events of the previous year are now part of my emotional DNA and I need to ensure that my life remains one filled with high energy, intense passion and continuous learning. And I need to spend the days, months, years and hopefully decades contributing to tangible improvements for patients like myself and for their caregivers and families.

And so today I wrote a resignation letter.

I have chosen not to return to my intense and brilliant community of coworkers. I have chosen not to return to a high-tech company that treated me more like family than their 201122nd employee. 

And that loss leaves me a bit melancholy.

Instead I have chosen to take my skills in a direction that will address the inequities in the cancer community; drive collaboration across the incredible, if slightly separate, cancer communities; and devote my energy and skills to accelerating healthcare transformation. Cancer has not been ‘a gift’ but I’ve done my best to try and brew lemonade out of the bushel of last year’s lemons that were tossed our way.

(At this point, I’ve not yet created something as light and refreshing as lemonade. Perhaps lemon curd is a better analogy – tart, sweet and kinda lumpy.)

The expanse of knowledge I’ve garnered in the patient and caregiver space is difficult to quantify but there is so much more to learn and I am invigorated by the possibilities.

Exactly one year ago I was terrified for my mother.

Today I feel a loss that quickly gives way to excitement.

Tomorrow is a new day and perhaps the start of a whole new career.

Rejection as a Catalyst

Rejection sucks.

People spin a lack of acceptance in many different ways but the bottom line is, if you’ve put yourself out there and were not accepted, you feel and, have indeed been, rejected.

I recently received my rejection letter from the Medicine X 2014ePatient scholar program and it bummed me out even as I tried to rationalize the realities:

• It’s not personal;
• Only so many people can be accepted;
• A gazbillion empowered, educated breast cancer patient voices already exist

the back of my head still screamed:

• My words were not compelling enough;
• I pared the wrong things out of my narrative;
• My place in the healthcare community isn’t strong enough to benefit the masses;
• I should have focused not on my breast cancer but on my gluten issues or my allergic nature that leaves me without a proper cache of antibiotic treatments;
• [more thoughts of self-doubt and second guessing]

And then it began to all come together over a cup of coffee.

I don’t need to be physically in attendance at Stanford Medicine X 2014 to tell my story and make an impact.

And neither do you.

There are members of health care and the scientific community that are already listening closely over social media. Simply join an #hcldr or #lcsm tweetchat to see what I'm talking about. There are a myriad of organizations collecting patient voices to try and lend a face to disease and chronic conditions. Check out Patients Like Me, Cancer Commons and Army of Women for a glimpse. There are individuals who have invested their careers in modifying and evolving health care to meet the needs of the individual. Follow Lisa (@PracticalWisdom) and Andy (@CancerGeek) to participate in the movement.

If you applied to the MedX ePatient program, you have alredy demonstrated that you are an empowered & educated patient. If you want to change the status quo, it is absolutely within reach. Let’s keep working together and let’s help amplify the collective patient and caregiver voices by encouraging other conferences to do what Stanford Medicine X began and has set the gold standard for - patient inclusion.

And I know it can be done.

In the Fall of 2013, after discovering the wonder of #MedX over Twitter, I was curious to find other conferences who were as open and inviting to patients. I began an online hunt for events in my area and found Personalized Medicine World Conference 2014. 

I examined the proposed program and, over Twitter, asked the organizer where could I find the ‘personal’ part of the conference including patient representation. I was told that the conference was ‘personalized based genomics’, intended for a non-patient audience and encouraged to take my thoughts into conversation with her by email.

We began a courteous exchange that, over the course of many iterations and the conference organizers’ willingness to reach out to local patient groups, ultimately led to an entire patient and advocate track co-sponsored and expertly moderated by Cancer Commons. 

Track 4 was a first for PMWC and a first for me.

As patients, as caregivers, as advocates for a better healthcare system, we can facilitate the Medicine X model of patient-inclusion as the standard protocol for healthcare conferences.

Find conferences and events in your area, reach out to the organizers directly or reach out through established patient-centric organizations. Ask about patient representation. Ask about patient scholarships. Get yourself invited to the party. Better yet, work your way onto the agenda and directly into the conversation.

Believe me, you have so much to learn at an event such as this and so much to offer.

In fact, when I review the individuals who have been already accepted, I am honestly overjoyed at the attention lesser known conditions will begin to receive with MedX14 as the catalyst. I am delighted that others will experience first-hand what I was just able to experience at the Personalized Medicine World Conference 2014 last week. I met genetic oncologists, researchers, genetic luminaries and other patients like me. I asked questions, answered questions, was asked to share my story and felt extremely valued as a participant in the conference.

Together, let's make this happen on a broader scale. 

Come September, know that while I won't be at the conference, I will be eagerly and closely following #MedX14 tweets and, in the meantime, I will use rejection as a catalyst to deepen the conversation and broaden opportunities for all of us.