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.

Recovery is a (Half) Marathon, Not a Sprint

Few individuals register for events knowing or even hoping to be the last one to cross the finish line. Being the final finisher in any event is typically known as "coming in DFL" or dead f****** last.

On Sunday, I expect to be DFL in the 31st annual SanFrancisco Kaiser Permanente Half Marathon and I'm pretty darn excited about it since two weeks ago today, I was under anesthesia and under the knife for a second mastectomy and the beginnings of bilateral reconstruction. 

My recovery has been a bit more complicated than the original mastectomy back in June 2013 but I've received the same level of amazing support from my family, my friends and my communities both geographic and virtual. 

I prepared for my surgery by preparing my recovery goals.

And, with the exception of drain removal on Day 5 instead of Day 4 post-op, I've met every single one of them.

Last week's 10K was the hardest. I prefer to run but when I walk, I prefer to walk swiftly. One week after surgery, six plus miles took me over three hours and required two coffee stops. I averaged ~1.9 miles per hour. This is S.L.O.W. by anyone's standards but I was grateful to have an amazing friend my my side, proud to have completed the effort and invigorated by the level of support I received for even attempting.

Yet, the effort wasn't just about regaining my physical strength. As I explained to a long-distance friend following last week's 10K: "You should know that these goals are simply the way a control freak tries to exert some control over the uncontrollable." 

Cancer was not something I planned on having. Cancer wasn't even something I considered an option for myself as a healthy eater, avid exerciser and vice avoider. But my diagnosis happened and I felt as if I had lost control of my body, my mind and my plans for the future.

Quality doctors who listened, allowed and encouraged me to explore treatment options enabled me to feel more empowered. And careful consideration of my options following mastectomy has helped to give me back some sense of control. But planning my recovery down to the day has been the ultimate in keeping me focused on the good, focused on the positive and focused on regaining what cancer took away from me physically and mentally.

So, as many of you warm up the chili and open up the chips in preparation of what could be the first SnowBowl SuperBowl, I will be walking with my husband, slowly plodding the streets of San Francisco; reveling in my recovery progress after only sixteen days; relishing the two cancer-free, symmetrical mounds of breast-like things on my chest; and reflecting on my health both mental and physical.

I expect to be last. So far back in fact, I can only hope the organizers keep a remnant of the finish line for me to cross and a small sign signifying the event I have just completed.

If not, I will still know the truth.

I will have not only finished the KP Half Marathon - I took back control of my health, I took back control of my body, I took back control of my mind and I won this whole damn race. 

The Rest of the (Pains, Drains & Recovery Gains) Story

My last post was written with the benefit of a regional block feeding my chest area Ropivacaine two days after my single mastectomy (first one was in June 2013) and bilateral reconstruction. I was extremely positive, if loopy, and simply antsy to be removed from the plethora of tubes and drains attached to my body.

Now, six days post-op, I could simply revel in the fact I am now drain-free and move on from there but that would entail skipping over the two hardest days of my recovery. And I would be skipping over the reality of this whole experience.

For those of you who have been there, you may not need the recap, you’ve lived a similar experience. For those of you who won’t ever go there, you may not need the details either. But, for the women who, like me less than a year ago, are sitting on the precipice of a jump into breast reconstruction – I’ll share the whole story.

Mentally, this surgery was far easier than the first. While my pathology report on the right breast has not come back yet, I am certain it is clean. I'm not worried about hidden tumors or rouge cancer cells. As I mentioned in a prior post, this surgery feels different - this surgery is about replacing what cancer took away.

Physically, this surgery has been a bit more challenging. And that adds an entirely different emotional component.

Day 3

After my discharge, the anesthesia department called daily to check on my pain block and explained that by Monday morning my regional block would be running dry. I had options, I could return to the hospital to have the balls refilled with Ropivacaine or we could remove them. 

Feeling buoyed by a successful 12-hour gap in need for pain medication and irritated by lugging around 'extra stuff'', I chose removal. Again, I had options. I could have returned to the hospital to have them removed or have them removed by my not-that-kind-of-doctor husband.

I chose the latter for convenience sake.

While he has been an excellent caregiver, Dr. Husband did need to be reminded that saying, "Oh $hit" and "WTF" while pulling tubes out of my back is not the gold standard in bedside manner.

With the block removed, I was told I would have between 0 and up to 12 hours of continued pain relief. 

The chest muscle spasms started around 9am. 

They were scary at first, but once I figured out what they were, the spasms were completely manageable without taking any of the prescribed Valium. We walked to a local salon, per my documented goals, had my hair washed and I came home to nap. Without the pain balls, I enjoyed more freedom of movement and began my mental countdown to having my JP drains removed on Day 4.

Day 4: Tears & Cheers

With many injuries the saying is, "The third day is always the worst."

In this case Day 4 and 5 are the ones I'd like to forget.

Combine physical discomfort with mental fatigue, emotional overload and the knowledge that my 24-hour output exceeded the 30 ml daily maximum limit required to get my drains removed and all I could do was sit on the floor, cry and talk myself back into the game for 10 minutes on Tuesday morning. 

While for moments at a time, chest muscle spasms were manageable if uncomfortable, Tuesday brought a sequence that just wouldn't quit.

I sat cross-legged in a patch of sunshine on my bedroom floor reminding myself aloud, "You can do this. Millions of women have done this before. You've got this. You've totally got this." The tears may have belied my vocal confidence but, odd as it may seem to some, talking to myself really works. 

When the spasms continued, I opted to take ½ of the prescribed muscle relaxer. Two point five milligrams of Valium later my spasms subsided, as did my consciousness. I slept for 30 minutes.

An hour later, I made it to my Living Strong/Living Well class. The day before surgery, I had walked in waved my arms over my head and said, "This is what I can do now and what I want to be able to do in three months at the end of the program." On Tuesday I was much, much slower but walking in to the program four days after surgery was the true victory. Up and down a flight of stairs and 10 minutes on the treadmill was about all I could handle and we celebrated a good effort with cheers and a cup of caffeine at a local coffee house.

Bedtime arrived and I was more than aware I had missed a goal – having my JP drains removed. Frustrating to be sure but now considered a mini-defeat in a much bigger victory.

Day 5: Tears & Fears

A left side output of 15 ml and right side output of 18 ml in a 24-hour period meant that JP drains could be removed as soon as I could get an appointment. I called the minute the office opened.

Appointment on the books, I should have been nothing less than thrilled. I was nothing less than thrilled actually. But I found myself in tears again anyway.

The tears on the way to the hospital were complicated. I was tired of feeling dependent; tired of feeling like a burden and, ultimately, just plain tired. Sleep has come in fits and spurts usually 45 – 90 minutes at a time. Since my discharge, I would sleep in the bed for an hour, wander the house for an hour, sleep on the couch for an hour, wander, etc.  

Honestly the tears are the scariest part to me. While I'm intellectually aware I have a lot going on, I feel as if I should be completely focused on the goodness that is recovery and the goals I have set for myself. Tears made sense when the what-ifs of cancer were in play but this time around I feel the journey should be all about healing, all about replacing what cancer took away.

Yet the tears have also been incredibly cathartic.

I didn't realize how hard I was pushing myself to brandish strength and exude positivity. For months, I have consciously focused on the goodness of reconstructive surgery and forgot that it's not only okay to be scared but a little bit normal in the face of the unknown. 

And they haven’t all been about surgery. We lost a friend on January 6^th. We didn’t lose her actually – lung cancer killed her. Then lung cancer killed my uncle on January 15^th. Many of my tears have been traced back to an overwhelming sense of loss unrelated to surgery but inextricably tied to cancer.

And today? Day 6.

Today I’m good. Drain-free, showered, sleeping much better, 60-minutes of walking and cycling at the gym, completely off prescription pain medication and re-focused on the remaining documented goals:

A 10K walk tomorrow and a half marathon on February 2^nd.

Pains, Drains and Recovery Gains

I don't sit still well, which makes me a horrible patient.

Actually, this mobility trait has an upside and a downside when it comes to recovery. The upside is obvious, I feel better mentally and recover more quickly when I can move freely. The downside is, for a few days after surgery, I shouldn't be moving freely.

After escaping the hospital yesterday afternoon, I  came home with two JP drains and two On Q balls filled with Ropivacaine. The drains I am familiar with, the 'pain balls' are new to me and provide a regional blockage around my chest. While I still have pain, the level is completely manageable.

Minutes ago I was caught high stepping in the kitchen.

"What are you doing?" my husband asked.

"Um, trying to get my drains going," I replied sheepishly.

He gave a huge sigh and said, "Why don't you go sit down and write a blog post or something."

He's desperate to care for me and I'm desperate to move beyond the place where I need caring for. So this recovery thing has turned into one big compromise. He let's me try to do everything myself and, when it becomes difficult, I ask for help.

Thus far things are working well.

Pains

I'm uncomfortable but certainly not miserable. While the Ropivacaine is still attached, I have weaned down to a single Norco every 8-12 hours. There are niggling pains, especially when I move in a way that engages my chest wall but, for the most part, I simply feel as if someone took a sledgehammer to my chest every time I breathe in deeply.

Drains

My drains went from a decent 30-40 ml output per side every 4-6 hours in the hospital to about 10ml every 12 hours so I am absolutely sure we won't be following the internist's pace of JP drains being removed in "two to three weeks."

There is one spot on my right side where I can actually feel and see the drain tube right beneath the skin. This isn't painful, it's just weird. And this time stripping my drains feels a bit more difficult because in order to gain purchase on the tube, I have to engage my chest muscles. Again, not really painful, just annoying.

Recovery Gains

Perhaps because I was under longer, I had some difficulty with anesthesia this time around and was unable to eat or walk too much in the hours after surgery. Mentally, this weighed on me and I was instantly concerned I would miss some of my early recovery milestones. However, after a bit of sleep in the wee hours of the morning, I was able to walk the ward a few times and discharged around noon on Saturday.

Today the grand plan is to complete the "comb walk" - a 1.75 mile route from my front door up and down neighborhood streets. I call it the comb walk because an aerial  view of the route resembles that of a military issue plastic comb.

Thank you all for the flowers, food, well wishes, positive energy and surprise visits.

All is good. 

Counting Down to Surgery | Planning Recovery

I am counting down the hours until Friday morning when I'm wheeled into surgery again by planning my recovery.

This surgery feels entirely different. 

The first surgery was fraught with fear of both the known and unknown variety. The first surgery felt like an enormous loss and a total violation. I felt like my body failed me. I felt like I did something wrong. I woke up without a breast. I woke up to discover sneaky cancer cells, albeit just a few, had begun to infiltrate my lymph nodes.

Indeed, the first surgery was a real downer.

Scheduled exactly seven months after the first, this Friday's surgery is about moving forward. Yes, I will be losing another breast but I will also be waking up with expanders on both sides and steps closer to feeling whole again. 

As the community of breast cancer survivors and thrivers know, reconstruction is not augmentation. I will not have normal looking breasts. And this surgery also differs from some other reconstructions such as Angelina Jolie's proactive efforts to avoid a breast cancer diagnosis. Ms. Jolie was fortunate enough to keep her nipples and the eight- inch slash across the left side of my body from the first mastectomy isn't going to magically disappear.

Honestly, my results will probably be considered a bit frightful to anyone who hasn't stood and observed from a similar vantage point.

But this isn’t about vanity - this is about trying to replace what cancer took away. 

And I'm very excited.

Nervous? 

Abso-flippin-lutely.

Afraid? No.

I trust my surgeons. I trust my oncologist. I trust my decision.

As an added bonus, I'm stacking the deck on the recovery side.

Tomorrow I will visit the YMCA for orientation into the Living Strong. Living Well. program. I had intended to participate in the program last August however, by the time August arrived, I was feeling fantastic and I didn't want to take another person’s slot.

This time, the schedule couldn't be more perfect. Tomorrow, the day before surgery, I'm going to go in to meet the trainers and my fellow patients and say, "This is me. This is what I can do now. Next week I'll be four days out of surgery and won't look so good. I need you all to help me get back to THIS."

Pre-planning my recovery has been both the best distraction and the biggest act of self-empowerment yet in this process. 

Telling family, friends and total strangers all about it is part two: you guys are the ones who I expect to hold me accountable.

I have lofty physical goals and I feel strongest mentally when I feel strong physically.

A recovery win-win.

So here is what I am planning. And I’m publishing it so you can all hold me to it.

Essentially my plan includes a shorter hospital stay and then follows a similar regimen as last time - lots of walking. However, since I have the Living Strong. Living Well program to support me this time, I've added a goal and signed up to do the SF Kaiser Permanente Half Marathon on Groundhog Day - two weeks and two days after surgery.

Don’t worry I'll be walking it. There will be no jiggle in my wiggle for awhile.

But there will be a smile on my face and my husband will be there every step of the 13.1 mile journey - holding my hand, making me laugh and reminding me I often have 'good ideas' that leave me cursing mid-execution. But I always finish.

(Side note: I’ve never finished a race DFL before (dead f****** last) but I expect this may be the first time and I’m okay with it. My goal is simply to finish before they take every bit of KP signage down!)

So please, please, please. Help hold me accountable. Ask me every day if I have walked. Ask me if I'm doing my arm exercises. You'll either be giving me a needed kick in the pants or you'll be giving me the opportunity to say, “Hell yeah, I'm doing great.”

And that phrase, my dear friends, is the ultimate feel-good moment on a long road to recovery.

Ah. Resolution time, right?

Twenty-thirteen was a complicated year and I spent the last couple of weeks secretly waiting for it to be over. Mom’s cancer diagnosis kicked off the year in January and my grandfather’s ambulance trip to the ER at 11:57pm last night capped an eventful health year for our entire family. The death of a friend, the terminal diagnosis of an uncle and another friend entering into the home hospice program were interspersed and I left the year thinking “good riddance.”

But 2013 was not all bad. I spent an incredible amount of time with my mother. I learned just how deep my husband’s love goes. I discovered an enormous community of support I didn’t know existed. I watched my children gain inner confidence and strength as they grew upward and inward. 

I learned how strong I am. 

And I laughed a lot.

In those final weeks of 2013, I realized that while the dawn of a new year always seems to harken hope, it remains part of that complicated set of events that we call life.

The good. The bad. The happy and the sad.

There are no guarantees 2014 will be ‘better’ than 2013, there is only the simple fact that each day comes, one after another bearing its own set of gifts and challenges. As a self-proclaimed control freak, I realize I only have control over my response to those aforementioned items.

While the masses make resolutions for a new year, I think I'll go with a few mantras instead.

1. Look backwards, sideways & ahead but always step forward.

(unless something is falling out of the sky. then duck and cover!)

2. When in doubt, say what's on your mind.

(not usually a problem for me, so I'm counting this as a win already!)

3. This moment only comes once.

(only once. ever)

4. Anxiety wastes energy.

(no exceptions)

5. Sharing is caring.

"You'll get mixed up, of course,

as you already know.

You'll get mixed up

with many strange birds as you go.

So be sure when you step.

Step with care and great tact

and remember that Life's

a Great Balancing Act.

Just never forget to be dexterous and deft.

And never mix up your right foot with your left." ~ Dr. Seuss

Happy New Year. May your days be filled with laughter and light.