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Saturday, May 24, 2014

vulnerabilities and anxieties

to my dearest family, extended family, mentors, teachers, collaborators, colleagues and friends, (the best working relationships blur all of these labels, for i think everything should be a bi-directional, compassionate exchange and conversation to figure out how we see the world similarly and dissimilarly), 

many of you know, i have been challenged with managing my mental wellbeing since 2010 at the time of finding out of my positive mutation test result for a deleterious mutation in CDH1. the details are not crucial here. what is crucial is that in times of great vulnerability and need, you at one point stepped up to come to my aid, or to teach me a lesson, which is mostly that first and foremost, i need to love myself and show compassion towards myself and others.

i have mostly managed the symptoms of my biology + environment by seeking professional guidance and behavioral practices. however, as we know from thermodynamics, the universe tends towards entropy, and sometimes (depending on how we delimit our frame) that is out of our control. 

my process through this stage of transition and transience has been to:
1. come to terms with my grief over having lost my mother and come to terms with the grief over losing my disease-free medical identity

2. come to terms with having been hurt by not knowing where to seek appropriate support

3. come to terms with carrying now so many labels: scientist, engineer, fellowship winner, pianist, violinist, musicologist, depressed, manic, patient advocate. i have some personal qualms with labels (always consult the OED first!), which is maybe why i have been in denial sometimes about my own condition.

in the last couple of years, i have bought myself maybe another 40 years by having preventative surgery. it was the best decision of my life so far. it has led me to so many places. this past week was really about coming to terms with not only other peoples' mortality, but my own. i finally reached that point where i was so afraid of what was happening in my body, and there was no way i had enough information to know what was going on. in that moment of fear, i came to the point of recognizing that yes, i will pass on someday, but i am not ready for that day yet. someday i will be (only via natural/out-of-my-control means). i find peace now in knowing that my mother was/is a beautiful person and that she had the people who love her the most around her in 1996. i find peace in knowing that when that day shall come, i too, will be without pain, without regret, and will be in the place i want to be and with the people i want around me (schedule and budget permitting). 

the past week has been rather traumatizing. i wish we could all be a bit more honest with our vulnerabilities and fears. i spent the week having to convince people around me (mostly psychiatric medical folks) that this really is not a psych in-patient case. my case hx is too complicated, and first and foremost, we need to address what seems to be some changes to my digestion (at least iron deficiency anemia -- low fat absorption) and new neurological symptoms (light and sound sensitive migraines accompanied by weird random nerve pain up and down my spine and where i used to have repetitive stress injury from piano and bad posture -- i studied for orgo too much). 

i don't know what medical tests will reveal next week. i am intentionally maintaining my sense of calm and only considering the next day or two. 

i am so grateful for your support as well as the support and the warmth of the rhodes community, the MIT community, the punahou community, the global NSFC community and others who have joined me for parts of my journey along the way. 

this goes mostly without saying, but i just want to share because this is how i deal with strong affective experiences with things like: anger, grief, shame, vulnerability, guilt, regret. the best pieces of advice i have ever gotten are to first show compassion to yourself during a time of duress and hardship. second, show compassion to those around you. 

here, i (mostly iterating something i think that is already understood) would like you to consider the way we all use labels. yes, i have been depressed. yes, i have been manic. however, for the time being, since we are still in the 'tuning' phase of my psychiatric care, i would like to first and foremost be identified with the label of 'CDH1 mutation carrier and post-prophylactic-total-gastrectomy survivor'. that is how i identify myself as a patient. 

given the insight i have into many strong affective experiences, i beseech that for your dealings with other individuals, you consider first how they identify themselves as an individual and then as a patient. i have way too many insights into what kinds of experiences may make individuals vulnerable. being vulnerable myself in the moment, i really cannot carry that right now. so, if i may say so, the patients always have a right to be heard. it is my duty as a patient advocate to ensure that the patient experience is voiced and heard and recognized by the medical community regardless of where they are in the world.

i am traumatized, that is the truth. however, i understand what people may do in times of fear, because i myself have been in similar times of fear. i have not always been the most understanding person, but i try with every ounce to be a non-judgmental person such that no one around me feels that they cannot be open with their vulnerabilities. 

so, in a moment of extreme vulnerability, i ask you to think to yourselves: who do i love most in the world right now? pick up a phone and try calling them to say simply, i love you. 

farewells for me are always too difficult. i prefer the hawaiian way of 'a hui hou': until we meet again.

my mantras in times of vulnerability and hardship:
kia kaha (maori, be strong hearted)
be beautiful (whatever that means to you)
aloha (hello, goodbye, love, compassion, peace, mercy)
namaste (i bow to the light in you, for you bow to the light in me)
have fun

with all my love and warm wishes,
Jennifer I Jiun Lai (Jenn)

Friday, June 14, 2013

Intertwined

In my last entry, I was living in a fairytale. Life was really good, and it still is in many ways.

If there is one thing I keep learning, it is that life is not a straight or easy path. Rather, it is a meandering journey. Sometimes it takes me through shadowy, enclosed valleys, and other times, I find myself feeling like infinity, at the top of a mountain on a clear day with the wind caressing my cheeks. In the last six months, I feel like I've trekked the world's terrains-- the low points and the high points-- several times over.

I'm not really going to write much about my valleys of depression here-- not because I don't want to be honest with my experience, but mostly because it is still something scary to me. I don't yet know how to best talk or write about it, though I'm working towards that.* Suffice it to say, though, that unfortunately, much of my winter and spring looked like this. Oxford, and really, everything and everyone around me lost its color and glitter. I struggled to feel anything about my work, about my friends and family, and even while riding a dromedary through the golden sand dunes of the Moroccan desert. Everything was dull. The closest I could get to feeling something was cycling downhill without brakes and savoring the sensation of air rushing in my face.

I am grateful for the day in May when the sun came out, and somehow things were better. I'm not sure what my shriveled kernel of corn was, but somehow, I realized that if I could do something as simple as getting out of bed, then maybe I could do a little bit more with each day. Eventually, working from brushing my teeth, to doing laundry, to cooking a meal, to practicing piano, I realized that I was no longer in that shadowy valley. I wasn't at the top of anything either, but I had at least found myself in some sort of grassy pasture or meadow. I started to look forward to things again like my sister's wedding, and believe in myself. I knew it would be challenging to write the essays towards my degree-- work I had been struggling to engage with since January-- but it was now a challenge I felt ready to face.

The last couple of weeks have been a marathon and a whirlwind. Between traveling 22 hours each way to see my sister Carol get married in Honolulu, and returning to Oxford to battle jetlag while writing 11,000 words in four days, I have finally recovered and descended from my cloud of adrenaline to take a step back and process everything, feel everything in full. And when I do, it's bipolar, bittersweet. It is as if everything that is good is only so good because of the journey travelled. Seeing Carol in her dress on her wedding day was so breathtaking only because of how much I wished my mother could have seen her. Finishing my essays was only such a triumph because of those dark days I could barely lift my head. Sometimes I feel haunted by my past, haunted by the knowledge that it will always be there, hidden in the context. I think a more accurate representation, though, is thinking of the past, present and future as a process, like the weaving together of different fibres to form the rare fabric called life. The truly amazing phenomenon is watching the fibres of different experiences we share come together, our lives becoming forever intertwined in a glorious tapestry of human connectedness.

I am so grateful in my life for those who have stuck by my side: my parents, sisters, relatives, friends, mentors. I am grateful for those who, even though they couldn't travel my journey with me-- solitude being characteristic of journeys like these-- stayed on the sidelines as my personal cheerleaders; for those who cheered me on and believed in me even when I didn't. These people convince me in the power of love, for in my times of struggle, I have never before felt so loved nor so much love for others.

A mental snapshot I will always cherish: my sisters and I on the dance floor during Carol's wedding reception, swaying to the music, our arms interlaced in a ring, foreheads together, weaving fibres and sharing space as only siblings can.

*An excellent personal account of depression at Oxford by my friend Grace Kim-- I strive towards honesty like this. 

Monday, December 17, 2012

Real or Not Real?

The Bodleian Library.
Occasionally, I have the strange sensation of looking up from my surroundings-- today the LIRR-- and feeling like I've woken up from a very long dream. I swear it was just yesterday that I was a student at MIT, not yet affected by HDGC. But at the same time, that life seems ages away.

The sheer amount of change in my life in the last two years is absolutely mind-blowing: I found out I carry a CDH1 mutation, I graduated from school, I moved to another country, I started graduate school, I moved back home, I had major surgery, I moved back east, I started and finished a new job, I moved back to the UK, I changed disciplines (temporarily), I weaved myself in and out of relationships with friends, old and new. Listing the changes that took place makes it easy for me to see how my life today would be completely unrecognizable to the Jenn of 2010.

The Birmingham Cathedral.
One of the strangest things about my experiences of the recent past is their juxtaposition. I think back to where I was nine months ago-- hospitalized in Hawaii after my total gastrectomy-- and often find my present surroundings unbelievable.

My new life in Oxford so far has been as magical and blessed as I could ever have imagined and hoped for. I am constantly amazed by the concentration of once-in-a-lifetime experiences stuffed into the last ten weeks: reading philosophy in the Duke Humfrey's reading room of the Bodleian Library; running in the mornings with the cows and the mist in the picturesque Christ Church meadows; singing Evensong service at the Birmingham Cathedral; taking piano lessons at the Royal Academy of Music; practicing in the Holywell Music Room; traveling to Oktoberfest in Munich, Germany; seeing Mozart's birthplace in Salzburg, Austria; wandering the Christmas Markets in Birmingham, UK and Prague, Czech Republic; and most importantly, meeting and forging connections with some of the most incredible and inspirational people I know.

The Holywell Music Room.
More than once, I've stopped myself to ask of my new surroundings and experiences: is this real life?* As amazing as it all is, there is a strange disconnect, almost an incompatibility between my real life now and my real life then. Sometimes that incompatibility reveals itself as I'm trying to think about an esoteric theoretical debate in musicology, or getting ready for a lavish three-course meal in an ancient (by my standards) hall.

I remember so clearly the night I found out that Jess Mac had cancer in her stomach, and would have to get her gastrectomy soon. I was in the middle of getting ready for the Rhodes Coming-Up dinner-- a festive occasion for which we dressed up in our ball gowns and dinner jackets, and celebrated the beginning of our time together at Oxford over champagne and a delicious three-course meal with wine pairings. Alone in my room, as I zipped up the back of my gown, put the finishing touches on my hair and make-up, I couldn't help but shed some tears as a knot of tension built up inside me. In Jess' present situation, I saw my own experiences-- something I would never wish on anyone else-- and realized they were not as distant as I would have liked. I know now that no matter how much time passes between March 21, 2012 and the present-- my inauguration date into the no-bellies club-- HDGC will never truly be gone. It lingers, not as a nightmare, but as an indelible mark on me and the way I see the world.
The Christmas Market in Old Town Square, Prague.

As wonderful and magical as Oxford is, what is real life? Real life is the connections I've made because of HDGC-- bonds with strangers that immediately bring us together from around the world as family. Real life is knowing that I've finally woken up from this long nightmare a stronger and more whole person, and that my experiences with HDGC are the lens that put my life-- my goals, my priorities-- in focus.

*yeah, this post references both The Hunger Games and David After the Dentist.

Thursday, October 25, 2012

Hello Again

How quickly time flies.

Already it has been five months since my last entry.

To be honest, I didn't write for a very long time mostly because I felt I had nothing to write. The month after my last entry was probably the least inspired month I've had in a very long time. I didn't do much at all except exist. I was tired of being the girl who had surgery, of constantly having to tell people how my eating was going. I am a person who defines myself very much by what I do, and I felt very lost just being the girl without a stomach.

Since then, my life has completely turned around in the best way possible. I moved away from home for the summer, working in a lab that studies HIV at Dartmouth College, with a mentor who is also probably one of my best friends. I roadtripped from New Hampshire to Boston, New York, Montreal, seeing old faces and new, including a No Stomach for Cancer cookout in July on the Cape. I made the decision to do my MD/PhD (eventually) at the University of Washington, and hope to do my PhD there with one of the coolest people ever (who just so happened to discover the breast and ovarian cancer causing gene, BRCA1). I then moved across the pond to a quaint college town with some more of the coolest people ever, studying something I love-- music.

So in short, life is treating me very well at the moment.

It's not perfect--life never is-- but it's about as good as I could ask for it to be. For the most part, I feel normal. I eat, I drink, I play. There are the days when something doesn't sit quite so well in my small intestine, but for all that I have ahead of me, it's worth it. I've learned what dumping syndrome feels like now. I've learned that taking a shot of hard liquor is probably not a good idea. Most importantly, I'm learning how to live life in the richest and fullest way possible, and all without a stomach.

I have many more thoughts to share, and this blog will probably turn into something not directly about HDGC or CDH1, but just about my life without a stomach.

For now, I'll leave you with this. I had the feeling before my surgery that that day--March 21, 2012-- would be the first day of the rest of my life. Finally, I feel like the rest of my life is here.


Friday, May 18, 2012

109 Reasons

My last blog post was a bit on the negative side. I want to thank everyone for their thoughts and kind words over the past couple of days. I'm sorry if it wasn't easy to read, or if it just came off as a bunch of whining. I'm the kind of person who thinks it's important to confront emotions, even the negative ones. There is something about putting it out there and acknowledging the challenges that allows me to accept the circumstances and move on.

It is important to remember when contemplating the negative, that there is always another side of things, a bigger picture to be seen. Here is the bigger picture.

I know, kind of gross.
Yeah, this is my stomach.
There are 109 reasons why this is all worth it-- the 109 sites of early cancer that pathologists found in my stomach after the surgery.

After the surgery, my stomach traveled to the pathology lab. There, it was preserved, mapped and chopped up into hundreds of slides. After weeks of reading all of the slides, the pathologists mapped out where they had found sites of early cancer.

I had heard relatively early on that they found cancer. It was about a week after surgery when my surgeon came into my hospital room and asked if I wanted to hear a preliminary pathology report. In my hospital-dazed state, I assumed he was talking about the results for some of the blood work that was done, since I hadn't expected hearing about pathology so soon. Then out of nowhere, he said it: they found sites of early cancer.

Examples of signet ring cells in my stomach (yellow arrows).
A couple of weeks later, I met with the pathologist who was in charge of my case. In my scientist mode, I asked to see some of my own slides. I wanted to see what these deadly cells look like.

To look at these cells, the pathologists used a periodic acid-schiff (PAS) stain that detects a protein called mucin. While mucin is normally produced by certain cells and gets incorporated into mucosal secretions, it is overproduced in some cancer cells, including the signet ring cells that are the hallmark of diffuse gastric cancer. These cells show up on the slide as fat and round -- full of mucin.

As a scientist, it is satisfying to have visual proof of these signet ring cells. As a patient, I still can't figure out how I feel about them. It is somewhat terrifying to see the cells that, had they been left unchecked, would have at some point waged war against my body. At the same time, I am relieved that they are no longer in my body. And perhaps the weirdest feeling of all is feeling relieved (happy?) that they were there in the first place, validating my decision to have surgery. (Who in their right mind says they are happy to have stage T1a cancer?)

Regardless of how I feel, the facts are still there: I had 109 sites of stage T1a cancer in my stomach. I had surgery, and now I don't.

So there it is, my 109 reasons why this is all worth it.

Tuesday, May 15, 2012

Isolation

In the past couple of weeks, I've come to feel isolated in several aspects of my life.

For one, there's the obvious. I no longer have a stomach. The percentage of stomach-less human beings in the world is non-zero, and for them and their shared wisdom I am thankful, but I still feel isolated from those I interact with on a daily basis-- my friends and family. While they experience stomach-less living through me, they are a degree removed. They don't directly feel the pain from eating too quickly and having food get stuck, or the discomfort and embarrassment of throwing up mucus-y gooey small-intestinal slime into the bushes in public, or the dread I feel before each meal, worrying that something won't sit right. Though all these things combined are much much better than the alternative-- dying of stomach cancer-- they are still things I need to live with. They are still the daily annoyances and inconveniences reminding me that my life at the moment is not normal.

Aside from the obvious life changes, there are the other adjustments that this roller coaster journey has forced me to make in my life. Though I very much appreciate the time to spend at home with my family in as a beautiful a place as Hawaii, I also fully experience the fact that the Hawaiian archipelago is the most geographically isolated set of islands in the world. My friends and peers are spread across the nation and around the world, many of them not here. I feel stripped of a community. My days are mostly rather solitary--watching tv, reading, playing piano, taking walks--and sometimes it starts to feel like I am living in a vacuum.

I thrive on human interactions, conversations, and shared experiences. I value every text message, g-chat, Facebook wall post, but it's not quite the same. I have been lucky to have had friends and family visit. Their visits break up the homogeneity of my days, allowing me to take a break by playing tourist for a couple of days. It gets me out and about, but it doesn't abolish the abnormality from my life. I still slow down mealtimes, throw up in a used styrofoam meal container in public out of last resort. But their visits are temporary, and before long, I resume my vacuum-like life, and they resume theirs, HDGC-free and thousands of miles away.

The hardest adjustment has been feeling isolated from my own life. Even though the decision I made in the fall to take time off for my surgery made sense, it was still a tumultuous time. I felt torn from my life as I knew it. I thought that once I had the surgery done, things would feel more at peace, problems would be solved. But in reality, I feel stuck. I am trying to resume normalcy, but I don't even know what that is anymore. I'm living at home for the longest period of time since high school, but those days are long over. I am no longer at MIT, nor do I belong there, nor does the world of my undergraduate years even still exist. My classmates and friends have since moved on to new schools, new jobs and dispersed from Boston, the last place I really considered home. During my last year at MIT, I worked hard to put in place a plan for the next years of my life-- Oxford and medical school. While I got a glimpse of my future life at Oxford during my five weeks there, I didn't get the chance to know what it feels like to live it. So that leaves me with the question, what is normal, and how do I get back there?

Thankfully, there is a time limit on my isolation. I know (hope) my eating problems will get better. I know I will be taking on a job for the summer. I know I will be moving back to Oxford and getting to live out my life there. I know I will be going to medical school eventually.

In the meantime, perhaps by sharing my experiences and feelings with you here, we can feel a little bit less isolated and a little bit more connected. Please share my journey with me here, share your comments and thoughts below.

Wednesday, May 2, 2012

Progress

The funny thing about progress is that sometimes it seems like it just isn't happening. It's only after letting the seemingly identical days blur together do you finally see some progress grow out of the blur.

I think the reason I haven't been blogging much recently is because there doesn't seem to be anything of interest happening from day to day. But in the past two weeks, a lot has happened.

My feeding tube.
A while back, I was complaining a lot about my feeding tube. At first it wasn't a problem; for the better part of my two weeks in the hospital, it was the only way I was getting any sort of nutrition. But when I finally got disconnected from everything, the IV and the enteric feeding pump, they decided to leave the feeding tube in even though I was eating. Just in case.

I went home, and the major benefit of my feeding tube was being able to use it for my liquid painkiller so I didn't have to taste it. After a while though, I started to blame all of my frustration with the sluggishness of recovery on the feeding tube. It hurt when I moved around, and having to deal constantly with that pain was a pain, a literal thorn in my side. Not only that, it was the last physical thing in my body that obviously signified that I had surgery.

After I had had enough of it, I realized that the pain of the feeding tube was not worth its just in case function, especially because my weight seemed pretty stable. I was eating with minimal complications and was only losing weight at a rate of around 1lb/week. Finally, my surgeon removed the tube. Let me tell you, having a plastic tube pulled from your small intestine is a really really weird feeling. Thankfully, it only lasted for so long before the tube was out for good!

On top of the Lanikai pillboxes. 1mo, 7 days post surgery.
Having the feeding tube out was really such a huge step. The pain I had been experiencing was gone, and at least I was feeling physically more like normal. In fact, so normal that I even went on a short hike four days after having the tube out.

So all in all, things are going pretty well. There are still the constant reminders that I had the surgery done-- the allergic reaction I had to the steri strip adhesive, the almost constant fear of food getting stuck and having to regurgitate in public, not being able to scarf lunch down in twenty minutes. But progress is being made, and with each step, I'm a step closer to my new normal.