Tuesday, March 24, 2015

Dear Angelina,

Dear Angelina,

You rock girl. Thank you for sharing your story with the world. By going public in revealing your genetic predisposition to cancer years ago and the choices you have made to ameliorate it, you display a level of courage that exceeds that which is necessary in dealing with this on even a private level. You again spotlight the fact that people have medical options and should be allowed to proceed in whatever manner they and their physicians feel is best. And if it means removing perfectly normal organs from one's body because they may one day develop cancer that goes undetected until in an advanced stage, then so be it.

It is unfathomable to me the number of people who decried your decision to undergo prophylactic mastectomy two years ago. People who know nothing about hereditary cancer, people who are completely uneducated about risk statistics, people who just decide they need to put their ignorant opinions out all over the internet. No doubt such people will be making the rounds again now that you have revealed your most recent preventive surgery. It a shame really that so many don't bother to learn about the things they don't understand.

At least you and I and countless others are comfortable in our decisions because we have been empowered with the knowledge necessary to navigate the web of hereditary cancer and are able to make truly informed choices.

I wish the best to you,


So for everyone reading this who may not be aware, two years ago film actor Angelia Jolie Pitt wrote an op-ed piece in the New York Times announcing that she had tested positive for the BRCA1 gene mutation and had made the decision to undergo prophylactic mastectomy. It opened up a brief public dialog about hereditary cancer and preventive surgery, among other things. 

Sample pedigree showing hereditary cancer pattern
Coming from a family with a hereditary cancer syndrome caused by a CDH1 gene mutation, which raises gastric cancer risk to >80% and lobular breast cancer risk to 39-50%, I applauded Ms. Jolie Pitt for her candor and honesty and willingness to bring hereditary cancer information to the general public. I expected people to ask questions and learn from her story. What I didn't expect to see was the backlash.

I was horrified by many of the comments I saw people making about it on social media. Most notable was a few women (I think they were women-it was Twitter, so one never knows) who stated that Jolie Pitt was "crazy" and that the surgery was "reckless" and "unnecessary" because of the fact that "hereditary cancer represents less than 10% of breast cancer cases."

WHAT!? That last bit really got to me. Because you can't take a statistic based on the general population and apply it to the risk percentage of someone with a known gene mutation. That's just bad math. It's politician-level distortion of statistics right there. Yes, it is true that breast cancer associated with BRCA and other genetic mutations is less that 10% of all breast cancers, but that has nothing to do with any one woman's individual risk. 

The fact that hereditary breast cancer makes up such a low percentage of all breast cancers goes right out the window when a woman tests positive for the gene mutation. As Jolie Pitt explains in her editorial, her personal risk of developing breast cancer became 87% the second she found out she carried the mutation. That's quite an increase from a 12% risk, which is the average woman's, don't you think?

Today, she has another piece in the NYT because she recently made the choice to have her ovaries removed to prevent ovarian cancer. She goes into great detail about what the doctors looked for in screening tests, it's actually pretty cool. I'm sure she agonized over the decision and clearly waited as long as she could until she reached the point where the risk of keeping them was just too great. I admire her honesty and courage to face the consequences of her decision, which include early onset menopause and of course the scrutiny of an ever-devolving internet culture.

It's very easy to comment on something when you have no idea what you are talking about (ignorance is bliss I guess?) but let me very clear here: unless you have been told that you carry a gene mutation that increases your risk of developing any kind of cancer, you should probably hold off on judging Ms. Jolie Pitt's decisions. 

You can philosophically ponder what you would do in a similar situation all you want (incidentally, the decisions you think you would make and the decisions you actually do make when put in that situation can differ greatly-I speak from experience), but don't for one second admonish or ridicule the decision of someone else. People are not cavalier in making this decision, trust me. Though my gastrectomy was not preventive in nature - there was a pocket of cancer detected upon endoscopic screening - I still faced the possibility of having the surgery even if cancer was not detected, as did many in my family.

I am thankful that I was able to learn about my genetic predisposition for cancer so I didn't have to die like my grandmother, father, sister and two aunts. Just as Angelina Jolie Pitt has stated she is thankful she does not have to die like her mother, grandmother and aunt.

I can say that the comments on today's NYT post seem to be mostly positive and supportive so far, so I can only hope that many people have a greater understanding of how hereditary cancers work. 
(Edit: In looking at the comments on practically every other site that put up an article about this, it appears that people are as uninformed and irrational as ever.)

So here's to medical science, informed choices and better outcomes. As Jolie Pitt and countless others have stated, Knowledge is Power!

Wednesday, February 12, 2014

Slick Marketing, Free Market Forces and the Future of B12

[NOTE: An earlier version of this was posted, admittedly in somewhat of a fit of rage. I have since corrected some errors and hopefully presented a more sound argument.  - Teresa]

It is said that every person reacts differently and recovers differently after having a total gastrectomy (TG). Something that we all have in common is malabsorption of vitamins and minerals, which people experience to varying degrees. But one problem that is persistent in every TG patient is deficiency in the vitamin B12.

B12 is a vitamin essential to the healthy functioning of nerve cells and blood cells. It is found readily in animal meats and products such as milk and eggs, so anyone who eats a non-vegan diet is likely getting plenty of B12 through the foods they consume. It is even commonly added to fortified cereals and other similar products.

Unique to B12 is how it is made usable by the body. According to a fact sheet from the National Institutes of Health, "Two steps are required for the body to absorb vitamin B12 from food. First, hydrochloric acid in the stomach separates vitamin B12 from the protein to which vitamin B12 is attached in food. After this, vitamin B12 combines with a protein made by the stomach called intrinsic factor and is absorbed by the body."

Now if you were paying attention there, you surely noticed that in order to process and absorb B12 from food, you need to have a stomach. Those who have had TG and even some who have had gastric bypass rely on not just supplementation of B12, but specifically the injectable Cyanocobalamin form of B12. Because without the intrinsic factor in the stomach, the body suffers what is called pernicious anemia and is unable to convert oral vitamin B12 to a usable form, so one can pop all the pills they can swallow and it will likely do no good. 

Pernicious anemia causes the body to slow production of red blood cells and according to the above-linked article, "Without enough red blood cells to carry oxygen to your body, you may feel tired and weak. Severe or long-lasting pernicious anemia can damage the heart, brain, and other organs in the body. Pernicious anemia also can cause other problems, such as nerve damage, neurological problems (such as memory loss), and digestive tract problems."

I got my first shot at the doctor's office in September 2010 and took home a prescription for a 30mL bottle (@1mL per dose is 30 doses). I had a friend who is an RN come over and give me my next shot a month later. After that, I made Dan watch a YouTube video showing how to give a subcutaneous injection and he gave me shots for several months before I could muster the courage to do them myself. The general rule of thumb is to take a shot a month, so a 30mL bottle is basically a 2 1/2 year supply. 

I think it was within the first six months of my surgery I started hearing a little buzz about a shortage of B12 but didn't think too much of it at the time. I guess I felt that I would be okay as I basically had a 2+ year supply, drug shortages happen here and there in the pharma business and it would likely be resolved by the time I needed more.

Last February, I had to see the doctor for a new prescription. This time the pharmacy was unable to provide me with a 30mL bottle due to the shortage and I had to resort to using 1mL bottles of which they could only provide me with 12. (I am currently holding on to my used ones because I fear that one day I will have to pop them all open for the small remainder still inside and combine them just to get a few much needed doses).

Looking into the shortage I discovered that it was ongoing, it hadn't been temporary as I had previously thought. A few months ago I emailed one of only two FDA approved manufacturers of injectable Cyanocobalamin about the shortage. [I think now I had heard on a discussion forum that manufacturers are having trouble sourcing the raw materials to make it and mistakenly attributed that information to the company representative in my previous version]. In reviewing his response he simply said, "What I can report is that we are not manufacturing cyanocobalamin presently but hope to place this product  onto manufacturing schedule very soon. The decision to place a product back onto manufacturing schedule is not a simple process and involves several internal departments and regulatory agencies." Which I take to be a sincere and professional way of saying, "I have no idea when we are making more."

But the halt in production of injectable cyanocobalamin is only a small piece in the puzzle of why the shortage is so alarming. Because the main reason for the shortage, the reason the manufacturers have been unable keep up with demand is because it has become fashionable to get B12 shots. That's right, it's all the rage these days in the health clubs and the "medical" spas. It's being touted as a weight loss miracle.

The problem with this is there is absolutely zero evidence that injectable B12 is any more effective than taking oral supplements in healthy individuals. None. The only reason it "gives you energy" and "makes you feel revived" is because some copywriter in a marketing department somewhere is telling you that it does. Medical professionals and journalists alike have found that selling B12 injections as energy builders and an aid in weight loss is just a snake oil ruse. There is no evidence that B12 aids in weight loss according to the mayo clinic.

The fact is that normal, healthy individuals will get the same result taking oral B12 supplements as they get with a shot. Vegans who do not get enough through their diet will also be just fine with oral supplements. But as I explained above, TG patients, gastric bypass patients and others with various stomach/intestinal disorders, including the elderly, are increasingly missing out on these MEDICALLY NECESSARY injections because people like Madonna and Justin Timberlake want to have more pep in their step.

Last summer, this doctor lamented the B12 shortage and explains it's the placebo effect that makes people think they are getting "results" from the shots. I can attest to the placebo effect at work here because I would tell my doctors how I felt it working immediately and they would smile at me the way one would smile at a child that has just told the most unbelievable, fantastic tale.

Another blogging physician likens the current B12 shot craze to a "fetish" and calls out it's overuse. 

He does not mention though, that there are some people for which oral supplements do not work, and they are the ones most harmed by this increasingly popular practice.

And a television station in Salt Lake City, Utah (video seen here) investigated the use of B12 injections for non-medical reasons and did a good job in pointing out that people are basically wasting their money. What it failed to do is bring to light how this recreational use of injectable B12 is actually harming people who need it, because it is making it very hard to find and also causing the costs to skyrocket.

The increasing cost brings up another point: if you are getting B12 injections at the gym or the spa, man are you getting ripped off. Oh. My. Word. Are you ever getting ripped off! Even with the rising costs, people are paying too much for these shots. This alone should enrage current proponents of the "needle-fed B12 fad" and send them right to the vitamin aisle for a $5 jar of oral supplements.

I called a local "medspa" and inquired about their B12 injections. I was told that it would be $100 for a month long treatment.  Upon further inquiry she explained that it would be one 1mL injection per week for four weeks. So that's $25 for a 1mL shot. The journalist from KSL TV in Salt Lake City reported that people are paying up to $80-90 a shot. No wonder so many outlets are offering these "miracle" shots. It's all about the money.

I dug up receipts and can report the following: 
September 2010 paid $31.90 for a 30mL bottle and 30 syringes = $1.06 per 1mL dose. 
February 2013 paid $42.90 for 12 1mL bottles and syringes = $4.40 per dose
February 2014 paid 61.95 for only 9 1mL bottles and syringes = $6.88 per dose.

And those are retail prices. You know these health clubs and spas aren't paying retail, they're paying much less than that. Basically, if you are paying more than about $10 for a 1mL injection, you're being bamboozled. And it seems a lot of people are paying 5-10 times more than that.

Then there is the dosage to consider. People who need injectable B12 because they cannot absorb it from food or oral supplements are prescribed about a 1mL injection every month. I know of some who get one every two weeks and others who get one every 2-3 months, but once a month seems to be the average. Getting the shots once a week is just overkill for healthy people who have their stomachs intact. And I've even seen references in weightlifting forums to getting them every 3-4 days. That's literally pissing money away because your body is not storing all that. You're getting too much, paying too much, and it's being excreted through your urine.

I'm not against people who strive for a healthy lifestyle and choose B12 supplementation as a way to maintain that health and well-being. I just ask that people reconsider their use of the injectable form. Most people simply don't need it. And they are causing a shortage for others who can suffer severe effects, including death, if they have to go without for too long.

Looking on the bright side, there is some indication that the sublingual and nasal spray forms of B12 are absorbed directly into the bloodstream, through the mouth or sinus cavity respectively, circumventing intestinal absorption and the need for intrinsic factor. It is also speculated that the methylcobalamin form of B12, while more expensive, is better absorbed by the body and shows promise that the above delivery methods, rather than injection, may prove to be beneficial to those who cannot absorb it through the intestine.

So if it turns out that I can dissolve a few sublingual tabs under my tongue every day and still get a decent amount of B12 to keep my body healthy, I will surely ditch the needles. Then all the fad dieters and body builders can continue to pay ridiculous amounts of money for injections that do very little for them. After all, this is America, and people have every right to be swindled by charlatans.

Wednesday, October 30, 2013

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!

Friday, March 16, 2012

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.

Tuesday, December 6, 2011

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!

Friday, July 15, 2011

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.

Tuesday, July 12, 2011

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!