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!

Just a Bundle of Nerves

I was amused to a while back to see on The Colbert Report, a reference to the "gut brain." It reminded me of reading the blog of another gastrectomy patient last year:

"So why don’t I feel normal? I know it’s still early, but I thought that once I started doing normal things – eating, working, going out – that I would feel like I was getting into my routine, into my life, back to normal.  But I don’t, I feel uncomfortable and unsettled.  I have been working so hard to get my body readjusted and healthy again, I wonder if emotionally I’m just way far behind.  Some of it I know is thinking about Dad and starting to cope, in earnest, with losing him.  But it’s more than that – I know I didn’t have brain surgery, but I honestly feel (and this sounds ridiculous in my head as I am typing) – I feel like a part of my personality was in my stomach.  And that part got cut out too, and now I don’t feel like me.  I’m different, it’s different, everything has changed. And boy I wish the pathologist could find whatever I lost on one of his slides, but I don’t think it’s quite that easy." -Brian Chelcun (http://www.caringbridge.org/visit/bchelcun)

I had similar feelings very soon after surgery. It's hard to explain, but simply a sense of something being missing, on an emotional level, not just the very real physical aspect of a major organ being gone. Having this surgery can also have some benefits aside from the getting-rid-of-cancer-thing. Just prior to surgery I collected all my doubts, fears, bad habits and general negativity and I metaphorically swallowed them. The idea was they would be in my stomach when it got cut out, ergo, all that bad stuff would go with it. It seemed to work for a while, but somehow some of it has crept back into my psyche. Maybe it all got stuck in the esophagus or was fully reabsorbed before the stomach got cut out. I dunno.

I had read that having a gastrectomy can effect mood, and not just in the obvious way that adapting to life without a stomach can trigger a bit of, say, melancholy. It seems this enteric nervous system can play a role in emotions. It is, after all, a very real part of the nervous system. And it's the science behind such notions as a "gut instinct," and "butterflies in the stomach."

(some sauce for those interested):

http://www.nytimes.com/2005/08/23/health/23gut.html?pagewanted=all

http://www.scholarpedia.org/article/Enteric_nervous_system

http://www.psyking.net/id36.htm

In any case, I think this all speaks to the whole mind-body connection. Alternative approaches to health speak of the subtle bodies. The theory is that there are very real "bodies" connected to our physical one and that imbalances in those bodies can manifest themselves in our physical health. It's said that is how certain inexplicable healing can happen and explains how sheer will seems to make a person stronger, healthier and sometimes able to defy all scientifically medical odds. To me the enteric nervous system represents a real physical aspect of some of this stuff.

Science tells us that stress can adversely affect the body. The evidence shows that a heightened mental state will raise the blood sugar, trigger hormones that will alter metabolic functions. But it fails to tell us why; and is only beginning to figure out that a person simply using the mind can lower stress levels, thereby decreasing any associated risks.

If one can lower their own blood pressure simply by focusing on breathing and calming the mind and then the body, is it really that much of a stretch to believe that the same person can't lower their risk for getting a cold by a conscious effort to direct their immune system to attack and neutralize an invading viral infection?

Don't get me wrong, I don't think, by any stretch of the imagination, that a person can meditate away a stage IV cancer or stop the hemorrhaging of a severed artery by visualizing it magically regenerating. I just think that focused will plays a very large role in our overall health and the power of the mind should never be discounted when it comes to the healing of the body.

If the gut brain is associated with the entirety of the gastrointestinal tract, I would think that the stomach would be like it's cerebral cortex. So it's no wonder that without a stomach and the nerves that accompany it, one's second brain can be sent into a tailspin. Unlike the brain in our head though, the body can function without a stomach. It's just a matter of reconnecting the disjoined parts. The physical parts were rejoined as part of surgery, but the mental and emotional aspects seem to take much longer to heal. This is ongoing and just part of the process.

Sixth Month Update ... Seven Months Later

Dispensing with the obligatory six months post op update:
I finally made an appointment with my surgeon and saw her on the 2nd of February. I only had one complaint, that being a weird sensation on my left side right inside the bottom of my rib cage. Lately, about 15-30 minutes after I eat, I'll get the sensation of food passing through something there. Sometimes I just feel or hear it, other times it's quite painful. My main concern is that nothing should be there. I've been really paranoid about my intestines just kinda floating around in my body cavity, but the doc previously said that won't happen so now I'm just wondering what it could be. She offered to try to get an xray after i eat but since it happens to quickly and I didn't feel like getting an x ray, we let it slide for now. She didn't seem that concerned and since it hasn't really been happening anymore, then neither am I. (Ha! Of course it started happening now, as I write this. Typical!)

The other thing is that I thought she would get mad at my weight loss. It's said that after a total gastrectomy, a person will loose 25-30% of their body weight. Lucky for me, I'd been carrying an extra 50 or so pounds around since the birth of my son. See, I guess I just instinctively knew I would need it at some point so I held on to it. (Kinda like those stacks of plastic Miller Lite Halloween cups and nice-sized sturdy boxes in the basement, right? Oh wait, no, that's different!). I had the weight to lose, I even have some still in reserve, so I'm not finding a problem with it.

But I hadn't gotten on the scale for a month or two and then one day in late January, I got on it and it showed me almost 30 pounds lighter than I had been in the fall. I thought it was somewhat drastic but probable as well. But then the next day when I got on, the first time it had me ANOTHER nine pounds lighter. Yeah, from just the day before. Realizing this was an error, I got on again, + 7 lbs. Again, - 5 lbs. Obviously, my scale is busted. So when I went into the doctor I really had no idea how much I weighed.

Now, previously, when being weighed at the doctor I would take off my shoes, maybe my socks too, empty the change in my pockets, then ask the nurse how much makeup weighs and could she deduct some from the total cause I'm wearing a lot of eye shadow today. This time I got on that thing wearing my 5 pound winter boots after slipping my keys in my pants pocket and glancing around the room for any heavy objects I could hide in my hands. Anyway it read more than I thought it would, so weight loss wouldn't be an issue.

Now it's been tradition in my family for someone to have a gastrectomy, due to a positive CDH1 mutation or stomach cancer diagnosis, every fall since 2006. I went with a summer surgery because thought it would be nice to spend 10 days in an air conditioned hospital. Well, I have a sister who is totally breaking that tradition and having it done way early. After all, this isn't the kind of thing that should be put off. So next Wednesday I'll be at the hospital for a gastrectomy again. Only this time I'm not the patient. I'll be the advocate and the supporter. I look forward to apologizing to the nursing staff and educating a new rotation of med students. Anyone out there with prayers, positive vibes and healing thoughts left over after my surgery can send them down to 10th & Chestnut in Philly on February 16th. Thanks!

A Different Kind of Loss

I've lost something important. It came upon me when I was still in the hospital; after I got disconnected from all the wiring and tubes and I began to see a glimmer of my new life. I had a new lease on life, literally. A second chance after beating a cancer that could have killed me by now. No longer would I be content to let the world spin around with myself as a prop. I would be taking the bull by the horns, pulling myself up by the bootstraps and breaking free (of cliched metaphors, one may hope)!

By the time I came home I literally felt like a new person. I was not the same; and not just in the physical sense that my stomach was gone and I can trace my finger over a scar that reminds me of these changes. But in a very real way that I was motivated to be able to do anything. I don't know how to describe it, but it was like any doubts and fears I had were gone, taken out of my body with the stomach and diseased cells within it. This person was so on top of things. I had clear purpose and determination. My goals became neatly divided into their respective short and long term columns. Productivity and success were all I could see in my future.

Something happened along the way. I lost it. I find myself staring at the same pots in the sink, the same pile of laundry and the same tabletop of clutter, compounded daily so as to send the family to different corners of the house to eat their meals. This is not the way it was supposed to be. I was supposed to be on top of everything. There would be no time for clutter, neither in my head nor in my environment.

I should be working right now, if not selling my soul to the corporate grind and slaving in a cube under fluorescent lights, then earning a respectable income with my words. Have you read the Internet lately? It is in desperate need of a proofreader! Why do I have to be so selective in the opportunities I choose to pursue? But that's another story.

I have to regain the momentum I had five months ago. Maybe I need to reflect on all that Napoleon Hill motivation or something. I feel stuck in the same rut of procrastination and ennui that led me to let an entire decade pass by without doing anything of note. This is a time when I want to be productive and moving forward. There's a mind-set I possessed shortly after my surgery that had me feeling a palpable determination; a definite purpose. And it involved a whole lot more than watching bad television and making sarcastic Facebook comments.

Fondly looking toward the future,

Terri

Yuletide Greetings

I really love Christmastime. I always have. Tonight we had a little soirée at my mom's. My sister and her boyfriend came up from Atlanta and are actually flying back on Christmas Day, so in order to celebrate with as many relatives as possible, this "Solstice" night was chosen to get folks together. It helped that there was a fire. And some booze. And a nephew who works part time at Honey Baked Ham and gets a discount.

JJ remarked that it was the best-attended gathering (though some were missing, and very missed, but no guilt intended as there are always problems with work and living a thousand miles away and whatnot) in a long time. He suggested that maybe we should always plan for our seasonal celebration of this time to be on this day as opposed to the the 24th and 25th when there are so many other obligations to be met. Maybe this will be a tradition that carries forward.

I was pleased to send out Cards this year, as last year it just didn't get done. And by cards I mean those photos of my kids that get sent out to all kinds of people that I may never speak to even once throughout the year. But that is the whole purpose of this post.

I remember growing up and being excited to open the cards that came in the mail. I just wanted to see the cards themselves. Was is Santa and the Elves? Was it a charming Manger scene? Didn't matter; I loved the cards. Sometimes they came with the letter of what the family had been up to. These I was never interested in as child. Even growing into adulthood, they've made me kinda iffy. One one hand, I never understood why a distant friend or relative would feel compelled to give the rundown of everything that has happened in the lives of the family for the previous year. On the other hand, yes, I can understand. And now I think I like these yearly updates!

As a, shall we say, younger person, my attitude was that if we cared enough about each other, we would communicate more frequently than a "Sally got an A in Math and Johnny made Varsity Football" letter once per annum. But now I know better. Now I understand. Now I believe I'm on the verge of writing such letters. And what's worse is I see how they matter.

Even now with the Internet and the Facebook and every other thing there is out there, I'm happy with the fact I sent out Christmas Pictures of my Kids. This year, I almost succumbed to the This-is-What-Has-Happened-The-Past-Year Letter. But, honestly, I didn't want to have to buy more ink for my printer. WIN! I've chosen to write one. And you can read it here below, later, should you chose.

I decided that for me, it is important to get those yearly greetings. It may be a simple sliver of connectedness. But it is connectedness nonetheless. I've had friends who have told me that they are at a loss as to what to do with the Christmas pics. One is a new father so we'll see what he chooses to do. Another admittedly trashes them, so she sometimes doesn't get one. About ten years ago I came up with the solution. I make collages of all the photos and we love to see to see how the young ones grow.




In sending out these Yuletide greetings I always feel a slight pinge of remorse. For not including a personal note, for not keeping up to date in a more personal and prompt way. But then I realize that it's the wonder of this this crazy cyberspace. No it's not great as seeing an old friend and not the same as a hug and a genuine wish for well. But it is something, now, ain't it?

No matter what your inclination, towards the holiday, your family, et cetera, as long as it's known that you love others and others love you, I think that's what this is all about.

Keep the peace. Wait. No. Don't keep it! Amplify it and send it out. I think this may be my Christmaspost. PEACE!

Friends and Family Near and Far:
This year has been quite a doozy. Had record snowfall and despite the fact that Dan has been plowing on and off the past few years, this wasn't one of them. I've spent the better part of the last fifteen years working at this bar and restaurant that suddenly locked it's doors one day. Aw shucks. For what it's worth, we kinda knew it was coming, but expected a bit more than, "Don't bother coming to work on Monday."
Thankfully, Dan is doing well with his new business, so we hope to get through this economic downturn.

In March I had an endoscopy to check for stomach cancer cause there's this genetic thing. So a week later I got a phone call call from the GI doc telling me he found cancer in my stomach and I need to schedule appointments with an oncologist and surgeon.
I am a stoic and a pro. In fact, I think I may be a professional stoic. So going into this I was very low key. The fact is my family has been dealing with this for many years. It's almost like, "Oh, another one of you, eh?" So I had my stomach surgically removed from my body in July of this year. Thanks for that because it didn't spread or anything and I didn't need chemo or the other nonsense. In fact I recuperated so well that I was able to accompany my mom when she drove out to the Midwest. Or at least I thought so.

Dan is still working hard building his business. While he's not ready to incorporate and hire a team of employees, he's making a respectable living, which is more than I can say for myself. He plans on plowing again this year, so let's hope for a lot of snow!

The kids are both in middle school now and doing well. Janelle is still somewhat active is sports and considering trying some theatre work. Sean spends too much time playing PS3, contemplating his genius and will need to find some new hobbies in the near future.

The dogs are cute but a bit of a pain and are always considered free to a good home.

"Merry Christmas to All. And to all a Good night!"