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.

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.

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.

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.

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.

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.

On Being a Blob

I know. I'm terrible at blogging regularly.

I think it's probably because I've literally turned into a blob. The past couple of days/weeks, I've sort of let myself fall into this lull. I can't do much, and since I can't do much, I lose all motivation for doing anything whatsoever. The days blend together and it's just all one spread of time. I eat, I sleep, I watch tv, I read, I walk and I blob.

Anyhow, I am trying to de-blob myself slowly, and one of the ways I'm trying to do that is by updating my blog! (A blogging blob, how about that?) I've also finally started setting my alarm clock again, in an attempt to fix my sleep cycle. I started changing out of my pajamas and actually leave the house occasionally. I did my laundry today, a major victory, even though my clothes are still folded waiting to be put away. I'll get there eventually, right?

Home

I've been at home now for exactly a week! It's seemed like forever-- sleeping without a schedule and never changing out of your pajamas will do that to you. It's hard to believe that just a week ago, I was in the hospital still.

Coming home was definitely a welcome change. It is nice, after having spent two weeks in the hospital, to sleep in my own bed in my own pajamas, shower in my own bathroom, and of course, eat home-cooked food!

Eating so far hasn't been too much of a problem. I aim for five to six meals or snacks a day: breakfast, lunch and dinner, and usually a snack between each meal. I've found that I can tolerate most things like home-cooked Chinese food, yogurt, cheeses, and even a tiny tiny scoop of green tea ice cream. My main problems seem to be controlling how much I eat and also what seems to be a developing stricture. Overeating results in a really grossly bloated feeling. Usually, I'll just sit or lay around for an hour or so, and the feeling will pass. The stricture, however, is a bit more unpleasant.

It started out as just a little bit of pain after swallowing-- usually my first bite of a meal. It feels like a build-up of pressure in my middle chest area, and it's a little painful. Then, it feels like the food is stuck and just isn't going anywhere. Sometimes I just have to wait until the feeling finally passes. I hiccup, I burp, then the rest is ok. Today, though, was the first time that food went in the wrong direction--i.e. up instead of down. While I was waiting for the food to go down, I could feel my salivary glands kick into overdrive. My mouth filled with saliva, but I couldn't swallow it since my esophagus was blocked. Well, I did what was logical and stood over the sink for a while. Unfortunately, what came up wasn't just saliva, but also the first bite of my dinner. At least you could tell that I chewed well!

Luckily, my follow-up appointment with my surgeon is tomorrow, and I know that there's a quick fix to this problem. The stricture is caused by the formation of scar tissue around the area where my esophagus is now attached to my small intestine. Scar tissue contracts (myofibroblasts at work!), and can sometimes cause the opening to be reduced in size. The fix is an endoscopic procedure. Instead of probing around my stomach with a camera like they do for cancer surveillance, they can insert a small balloon and inflate it at the stricture site to open it up a bit. Hopefully I can have it fixed soon, as this is a problem I don't want to live with for a while. It may have to wait, though, since my surgery was only three weeks ago.

As for my weight, I think I'm doing pretty well! I went into surgery around 130 lbs, a bit heavier than my normal-- I wasn't kidding about the Eat-a-thon!-- and during my hospital stay, I lost about 10 lbs. Since coming home, I've only lost an additional 2 lbs. Granted, I haven't really been doing too much physical activity, so I will definitely have to keep an eye on my weight and my food intake when I start moving around more!

Finally, while I prepared myself for the challenges of eating and the likelihood of a stricture, there is one thing I didn't prepare myself for: my own impatience. As someone who enjoys being constantly on the move and always with something to do, it is hard for me to not get frustrated with the current pace of life. I had thought to myself that I would just throw myself totally into my eating--document everything I eat, my weight, make sure I eat enough food. The truth is, while eating takes up more of my time than it used to, it doesn't take up all of my time! It's gotten to the point where I am bored of watching TV (1+ seasons of Mad Men, 1 season of Downton Abbey and lots of Food Channel episodes later) and feel like I am turning into a blob. I want to be outside, planning for next year, doing something. But at the same time, I don't yet have the stamina for any of it. Today was an important lesson-- I left the house for the first time in a week and got winded by walking around the mall. Yes, surgery will do that to you. So, I need to learn to take my victories where I can get them. Walking and building up my stamina is a good start, even if it means I crash for a couple of hours after. So is making guacamole, doing a little bit of reading, zoning out with Netflix, attempting to play the piano, and updating this blog a bit more often. :)