November is Stomach Cancer Awareness Month

 Strange to be updating this after such a long hiatus. Maybe it's something I should consistently keep up with. I had thought it may be best to let this blog languish as it has been for the last 18 months or so. But I decided to add a new post for two reasons:

 First off, I have discovered that it still receives a surprising amount of traffic, no doubt due to being linked at the No Stomach For Cancer website. And several months ago someone in an online support group I belong to had linked one of my posts as a good source of information and encouragement for another user who was experiencing some post-surgical complications. So if my story can help even just one other person who is facing the same experience I did and still do, then this blog has served a good purpose.

 And secondly, I wanted to share some information. November is Stomach Cancer Awareness Month. This marks the second annual Walk in support of No Stomach For Cancer. Some readers are here by clicking a link from their website, so are aware of the organization and the Walk. For others, this charitable organization seeks to both raise awareness and support research for stomach cancer. Unlike many larger organizations that directly sponsor 5Ks or other large events, this Walk is made of individuals and groups who walk at various locations of their choosing all over the world. I will be walking with family this Saturday, November 2nd, on the Chester Valley Trail in East Whiteland Township, Chester County, PA. We are also collecting online donations through Crowdrise.

 I love this trail. I grew up on it. I walked it almost daily as a kid when it was still an active railroad line for Conrail. (Shhhhhh, don't tell ... people, particularly children, weren't supposed to do that before it was converted to an actual trail). The yard of my parents' house backs to the railroad tracks. Practically my entire childhood from the ages of 6-12 revolved around "the tracks." We had bike trails on the adjacent land, built forts, explored crumbling 19th century structures, gorged ourselves on wild raspberries and did a few other things I don't care to mention here.

 I almost feel a sense of ownership of this trail. Sometimes when I gaze out the kitchen window of my mother's house and watch all the folks running and riding bikes on the smooth asphalt, I shake my head and feel a tad bit territorial. What are these people doing in my habitat? They have no idea. But it's great to have a well-maintained trail for recreation and I'm happy to be able to use it for the No Stomach For Cancer Walk.

 I had wanted to have a big event for the Walk, selling tickets and having a dinner and raffles; make a big day out of it and raise a whole bunch of money. Well, my plans didn't pan out. Maybe next year. Or maybe in the spring. However I did find a way to raise a little bit of money.

 As a former bartender, I occasionally feel a pull to get back behind a bar. Pour a Perfect Pint, mix a margarita, light some shots on fire, break glassware in my ice. The feeling passes quickly, thank goodness, but I will be coming out of retirement for just one night.

On Wednesday, November 6, from 6-9pm I will be a guest bartender in the Club Room at Bistro on 10 in Honeybrook, PA. Details can be found here. The establishment will be donating 10% of sales during this time to No Stomach For Cancer. I will also be accepting "tips" in the form of donations. So if you are local to me and reading this, consider coming out for dinner or cocktails.

 And finally, the Daily Local News, a local Chester County PA newspaper is running a story about our family's experience with hereditary stomach cancer, focusing on the children of my sister Jeanne who passed away in 2003. It will appear TOMORROW in the Thursday, October 31 edition in the "People" section. I will post a link if I see it on the online version.

 Thanks for taking the time to read this and take care of your tummy!

But I Only Had a "Little Bit" of Cancer

Recently in an email exchange, another gastrectomy patient made the comment that he doesn't like to talk about his cancer, having not gone through chemo or radiation therapy.

I don't like telling people that I had "cancer" because I didn't have chemotherapy, never felt like my life was in immediate jeopardy, never went through any of the hardships that other HDGC patients go through.

That struck me immediately, because I understand precisely how he feels. My reply:

I know EXACTLY what you are saying! I've always felt weird about it. And feel even weirder about feeling weird about it. It's very hard to explain to people, isn't it?

Even now I have a hard time putting this discomfort into words. It's almost as if I feel that I didn't have cancer "that bad," if that makes any sense. Most patients have fought so much harder and so much longer, it's very hard to consider myself a survivor.

It's something I continue to struggle with. I was talking to my nieces recently about forming a team for Relay for Life. If you are not familiar with Relay, it is a 24 hour fundraising event benefiting The American Cancer Society (ACS) where teams combine their efforts to both raise money and take turns running or walking around a track or other course for the full 24 hours.

Relay has a carnival-like atmosphere, with teams selling items or offering services in exchange for donations that go directly to ACS. There's food and games and entertainment. It's used as a time to remember those lost to cancer and celebrate those who have survived.

Some family members have participated in varying degrees over the past 10 years or so. For years now we've been talking about forming a team again. We all think it's a great idea, but no one ever gets around to organizing it. So this year I decided to take charge and register as the captain to get things going.

The first problem was deciding on a team name. (We're still working on that). But then I came to another huge roadblock. When you register to participate in Relay for Life they ask you if you want to participate as a survivor.

Which brings me to my dilemma. There are a few different events during Relay in which cancer survivors can participate. One is the Survivor's lap, which is sometimes used as the first lap of the event. For some reason, I just can't see myself walking that lap. Was I diagnosed with cancer? Yep. Did I go to an oncologist? Sure, twice. Did I have my stomach removed? Oh yes, I did. Have I survived cancer? Well, yeah, but ... I'm not sure I fully see it that way.

Another Relay tradition is a special Survivor's Dinner. A few years ago, when questioned why they didn't participate in the Survivor's Dinner at a Relay event, two of my family members remarked that they didn't sign up for the dinner simply because, without a stomach, they felt they would be wasting food as they would be unable to eat the whole meal. I'm with them 100%. That makes complete and total sense to me. No Survivors's Dinner for me. Maybe if they let three or four of us split one meal ... but that's too much to think about.

Maybe I'm making too big a deal of it. According to the Relay website,
"A survivor is anyone who has ever heard the words 'You have cancer.' "
So I suppose in an official capacity, I am one. It's just something that I have a hard time acknowledging. And I'm not sure why.

I somehow feel I don't belong in the same league as people who have undergone multiple surgeries, endured the debilitating side effects of chemotherapy and the ravages of radiation. I certainly don't mean to belittle the struggles of someone who has undergone gastrectomy. I know these struggles well; I live with them every day. But I almost feel a sense of guilt in that the road could have been much harder for me, and wasn't.

So for now I'll just have to keep my participation in such events low-key, at least until I mentally define how I fit into the role of a "survivor."

There's not much to it yet, but here's a little linky to our team website for Relay for Life.

Social Fatigue

Definitely the longest stretch between posts, huh? You would think that the awful picture attached to the last post would have been enough incentive for me to write more in order to push that photo quickly from the top and front page of this blog. Sheesh!

Well the truth is that I don't want to bore everyone to death with the minutiae of my life. I mean people can only take so much, "Ate breakfast. Felt like crap but much better after I lay down for a bit. Ate Lunch. Felt like crap but ...," so I'm sure you understand.

With the holiday season upon us, everyone's social schedule gets a bit fuller. The December calendar tends to reach full capacity before Thanksgiving even rolls around. For me, the simple act of socializing presents itself with an unusual and, given my past as a bartender at a high-energy establishment, ironic dilemma.

It exhausts me. Completely. Yep, just sitting in a bar and trying to hold a conversation over the din of the crowd, sports on TV and especially live or loud music, is enough to send me to bed early where I'll sleep away half the next day. Simply talking to someone for more than a few minutes causes me to lose my breath and forces me into a state of quiet apprehension.

Recently I attended an informal meet up of fellow high school graduates from the 80's at a local bar. I discovered to my dismay that this reluctance to engage in animated conversation, combined with my increasingly common short-term memory loss which sometimes causes me to trail off in the middle of ...

Wait. What? Anyway, I realized that I can come off as abrupt, anti-social and rude. Especially when I just up and leave without the fanfare of impassioned great-to-see-yous and goodbyes and well wishes (though truth be told, hasty and quiet exits have always been part of my repertoire). But the fact is now I'm just exhausted and forgetful and I need to find someplace quiet to rest.

I had been out of the hospital after surgery for about a month when I attended my first social function. It was a low key affair, drinks and appetizers at someone's house, then off to the bar for the kids to get a bit more rowdy. I thought it was probably a bit to soon for me to be going out and indeed was at the bar for only a short time before I realized I couldn't keep up with the music and shouting and movement. It was all just so overwhelming.

That was over a year ago, but I still feel the same way about bars and parties and noise. Shouting a conversation in the ear of a friend I'm practically standing on top of because the place is so crowded used to be activity in which I preferred to not engage. Now, from a physical standpoint, it is essential for me to avoid such situations. It requires a certain energy that I can no longer muster.

Small, intimate gatherings are more my speed as are places that aren't so loud. The biggest upside to going out is that I'm such a cheap date. Considering I can't eat or drink as much as I used to, the bill is always manageable for me, which is nice. Cheers!

The Difference a Year Makes

It's hard to believe it's been a little over year. It's even harder to believe I'm doing as well as I am. I remember those first few days in the hospital; the absolute hell I felt. And the first few weeks at home, a sobbing little wreck of a human wondering if I would ever feel normal again. While "normal" is certainly an adaptation of what it was a year and five days ago, I've made a successful return to this newfound way of eating and living.

So to anyone reading this who is facing this surgery or is in the early stages of recovery-- remember, it will be just the most awful thing at first, you'll wonder how you will ever get through it. But it will get better and easier over time. I think even with warnings, a patient doesn't know just how difficult it will be. My brother didn't sugar-coat anything, "Teresa, this surgery is the worst. It's absolute Hell. You don't even feel human." But somehow it just didn't sink in; didn't quite convey the reality of the awful physical pain and discomfort combined with the mental fugue in which I would find myself immersed. But it's only really bad for a few days, and if you're like me, you don't remember most of it. I guess I have Morpheus to thank for that!

While there are many complications that can impede one's recovery it was always important for me to keep my thoughts positive in terms of the outcomes. Part prayer, part mantra, part "spell" if you will, the repetition of affirmations had been an almost frantic ritual in the days leading up to surgery and even for a while after. Add that to all the prayers and good vibes sent by countless family and friends, and I had a recipe for recovery.

One of my mantras was for "my gastrointestinal tract to adapt to not having a stomach." and I think it made a huge impact on my long-term recovery. I still have some discomfort with digestion. But I'm accustomed to it. What would send a stomached-person [<<--- new phrase I just coined] straight to the medicine cabinet for Rolaids or Pepto Bismol is just part of my everyday life. If it becomes unbearable, I just chew some crystallized ginger or ginger Altoids and that helps. I also know the feeling will usually pass in 20-30 minutes.

You learn to build the time you feel bad after eating into your schedule. For example, my daughter will ask when we are leaving to go shopping. My reply is usually something like, "Well I have to finish drinking this, then wait a bit and get something to eat, then sit there and feel like crap for awhile, so in about an hour, hour and a half, I'd say."

Lots of physical activity wears me out. In this summer season, we tend to get out more and go to parks and festivals that involve lot of walking around. I was always one to move at full speed, quickly snaking my way through any slowly ambulating crowd. Now, I find myself out of breath when I start going full speed. Its very frustrating because I've become that slow person I'm always in a hurry to walk around! But that's just me. I know of people who are running marathons after gastrectomy, so there you are. I wasn't running marathons before my surgery, so why should I be capable of doing so now, right?

My short-windedness is possibly a result of not getting all my nutrients. While blood tests a few months ago showed all my vitamin, mineral and other levels within normal limits, they were all at the low end of normal. Like an idiot, I didn't have my levels checked pre-surgery to determine a baseline of sorts, to see what was normal for me. I suspect they were on the higher end of the spectrum and the difference is what has lowered my overall energy.

Taking my supplements has not become the mindless habit it should have. I forget, I get busy. The daily AM and PM pill organizer didn't work. My sister and I had a conversation last fall about this. We determined that I should send her daily reminders to take her pills, she would send reminders to my brother, and he would send them to me. I noted that if we remember to send each other emails, we ought to just be able to remember to take our own pills. So everyday when I think of sending a note to my sister, I should just take my vitamins. Yeah, still not working.

The biggest accomplishment to date has been the fact that I've been able to give myself a B12 injection for the last two months in a row. Three months ago I had been determined to do it. But after standing in the bathroom for five minutes with my shirt slightly lifted, my right hand aiming the needle, dart-like, towards my pinched belly, I broke down and called Dan in to do it for me. I've finally summoned the courage and am able to do it myself. It takes a few minutes to psyche myself up, but I get it done! Still freaks me out though. And I still hate getting stuck with needles by anybody else.

There was a time, exactly a year ago, when I couldn't envision myself where I am today. I couldn't imagine being able to feel anything at all except pitiful, helpless, frightened. In those days I was focusing on making it though the next ten minutes. I couldn't even think about the next day, let alone a year down the road. Yet time marches on, as they say, and I'm glad to have reached this monumental milestone. While there are aspects of this new normal that I wish were different, or easier, I can only be extremely grateful to have come so far in this time.

365 Days Down ....

Here it is. One year ago today I lay supine on a cold steel table while a surgical team worked to remove my entire stomach, and with it, the existing cancer that had grown, plus any chance of recurrence.

The patient is a 40-year old woman with a history of an E-cadherin mutation and autosomal dominance of gastric cancer in her family. She has recently been diagnosed as carrying the gene and has a focus of early gastric cancer within her stomach. She presents now for total gastrectomy for treatment of her cancer, as well as prophylaxis against future gastric cancers.

As I sit here reading the Operative Report, I am in awe of what modern medicine can accomplish. With five little incisions, doctors went into my abdomen and were able to explore, cut out my stomach, omentum and a few lymph nodes and remove them from my body.

The greater curvature of the stomach was dissected out using the Harmonic scalpel.

This has a nice, celestial-divine kind of ring to it and pleased me greatly when I first read it. Turns out Harmonic is pretty much just a brand name, but I'll stick with my interpretation, because it suits my mindset.

Every time I read this report I understand more and more what it is saying. Often I have to look things up. While "pancreaticogastric vessel" is easy enough to figure out, "ligament of Treitz" and "enteroenterostomy" are not part of my standard vocabulary. Slowly but surely, I'm figuring out exactly what happened in there.

The small superumbilical incision [then only 1cm] was extended for a distance of 3 cm and an Ethicon hand port was placed to protect the wound edges. The stomach and omentum were delivered through this incision.

Think about that, they pulled out my stomach through a 4 cm incision. Gross.
All went according to plan, until they couldn't get that damn stapler down my throat! Other than that it was quite a success. Curative.

At the end of the procedure, all sponge and instrument counts were correct x2.
[No hemostats left behind!] The specimen had been sent to Pathology and both the proximal and distal margins were negative for carcinoma.

So it hadn't begun to spread from the tiny focus in the antrim. Crisis averted.

On this one year anniversary of my surgery, my niece, the third of my deceased sister's five children, has an appointment with "the family surgeon" Dr. C. After she recently tested positive for the gene mutation, our Rockstar Gastroenterologist detected a small focus of early cancer cells in her stomach. I've said before that the biggest problem with diffuse gastric cancer is that endoscopic screening usually doesn't find the cells until they have spread a great deal.

While it's certainly a blessing that the Dr. L knows how to screen for this kind of cancer, because it raises the likelihood of finding it before it's incurable, on the other hand, once even a tiny localized spot of signet cells is detected, it raises the stakes and makes the surgery something that needs to be addressed immediately, not just sometime in the future. It's unknown exactly how long it would take those cells to start spreading. So once they are found, it's time for the stomach to go. Even if you're only 22 and have your whole life ahead of you.
Good luck little Lola, you're going to be just fine!

The One Hundred (and Cryptology Addendum)

Time to give a shout out and some much deserved recognition to Karen Chelcun and the rest of the crew at No Stomach for Cancer. Karen has recently been recognized by The Massachusetts General Hospital Cancer Center as part of The One Hundred, as in people and organizations who have made a significant contribution in the fight against cancer.

I admire Karen and her family in their effort to raise awareness for stomach cancer and become a source of information for both HDGC and CDH1, which although so rare, has managed to unite hundreds of people around the world in an effort to educate in the prevention, diagnosis and treatment for people like me who face this disease.

I had thought that my own family, after having lost so many and having discovered this genetic mutation so long ago should have been able to spearhead some kind of monumental effort, but we can't even decide on which night to go see the play at the theatre down the road or agree on a good time to have Thanksgiving dinner, so honestly, how could we have created a network of medical professionals, patients and caregivers the way they have?

Check it out!

http://www.theonehundred.org/honorees/view/no-stomach-for-cancer/

I also recently discovered, via the No Stomach For Cancer website, a series of videos on YouTube concerning CDH1 as it affects members of the Maori people of New Zealand. If you are not aware, the stomach cancer gene was first discovered there by a team of researchers led by Dr. Parry Guilford,who is pretty much my favorite person in the whole wide world that I am not related to. Just a note if you do click the link to see the video(s), they are in both English and Maori, so if you don't understand what is being said, just wait, you will eventually!

http://www.youtube.com/watch?v=E6HlRxSXRCU&feature=youtube_gdata_player

Post Script EDIT: hahahaha I just opened an envelope that came in the mail the other day. I ignored it at first because I didn't recognize the return address. But it turns out to be the records I requested from the hospital that I didn't already have concerning my stay there, most specifically the nurses' notes. It's hilarious. Aside from the fact most of them have terrible handwriting that I can't decipher at a cursory glance, some of the notes are awesome.
"Pleasant and cooperative" O RLY?
"NG tube d/c'd by MD this am" Oh yeah! I know what that means! I remember it well! She pulled that awful vacuum tube out of my nose. Awesome!
"Denies need for pain meds" What was I thinking?
"J-tube clogged"
"J-tube clogged"
"J-tube clogged"
"J-tube still clogged"
"Patient refusing Tube Feed at this time due to discomfort/gas" ...and of course the fact that the tube is CLOGGED and she doesn't want further surgery to unclog it!
"Frustrated by lack of communication between doctors."

The Hunger Mindgames

I don't experience hunger any more. I think hunger is a sensation produced solely through communication between the stomach and the brain. So no stomach, no hunger. Period. Now if too much time elapses between meals, then I do get a feeling that "I have to eat" but I think this is more a sense that my blood chemistry is becoming imbalanced.

What used to be a funny organ at the bottom of the esophagus saying, "Hey, fill me up!" has become more the feeling of some metabolic function letting me know it's getting kinda bored and needs something to do.

My niece, also a gastrectomy patient, says she does get hungry. But I'm willing to bet this feeling she has isn't true hunger at all. I think people experience similar sensations and interpret them differently.

This could provide a valuable lesson to researchers. Emotional eating is real. When I want to eat something, I'm having a craving, I know that my body doesn't physiologically need it, it isn't real hunger. But I could interpret it as hunger and I would feel compelled to satisfy what I believe is a need. Without a stomach, I can tell the difference. Most people cannot. This leads to overeating and weight gain.

Recently, I flipped through a cooking magazine. One of the articles featured paninis, and had several recipes accompanied by tantalizing photographs. Just the visual stimulus of those pictures alone caused me to want some kind of hot sandwich with meat, sautéed vegetables, an excessive amount of cheese and some kind of sauce or herbal seasoning blend.

Now, this feeling created in my mind is a sensation I would have previously interpreted as hunger and I would have done something to get a sandwich like that, pronto! Even now, just thinking about it while writing this, I'm getting that feeling. I can even feel in my abdomen, a faint gnawing pinch; something that could be hunger, but I know isn't. My brain is just telling me that it is, because it wants an emotional need created by the magazine pictures satisfied.

I know I'm not "hungry" because I'm in the middle of slurping down a 12 ounce smoothie, which is about four ounces more than I usually have. So I know for a fact that my body doesn't need a panini right now, my mind just wants one. And if I were physiologically able to eat a panini right now without becoming ill, I would probably do it. But I know better. Now I can tell the difference.

Another mental aspect of eating that has changed is what I find appealing. I haven't had any kind of fast food since my surgery. Nor do I have any kind of cravings for it, ever. French fries make me gag, as does pretty much anything cooked in a fryer. That greasy, crispy cuisine hailed by some (hungover people) and cursed by others (health-conscious people) makes me ill just thinking about it.

On occasion, I've been able to have Chick-Fil-A, but not the sandwiches, the rolls not work well for me, just a few chicken strips and maybe a waffle fry or two. I actually tried a fast food burger the other day with disastrous results. So I won't be doing that again anytime soon. Pizza continues to be a problem and is even becoming less and less appealing.

Processed food, some would argue it isn't even food anymore, doesn't work very well for me. And it's not to say that prior to my surgery I ate a lot of it, probably less than the average person. But now that kind of food, laden with corn syrup, sodium and processed oils, is so easy to avoid.

The downside of not being able to eat convenience foods, is that if I'm unable to fix myself something, I'm often not eating anything. Thanks to liquid nutrition on those days. It tastes terrible, but at at least provides some needed sustenance.

Signing out now, I have to go eat something. I'm not hungry, remember, I just have to eat!