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.