Down with Wednesdays

You know there's something about Wednesdays lately that flat-out stink. Mostly the weather is crap but they just seem to have been pretty awful for the past few months. Years even. In general, Mondays have been the day that gets people down. Not me. Mondays are fine, almost great. But Wednesdays . . . I'd rather stay up all night on Tuesday and then go to bed just as day is breaking, sleeping all day and night into Thursday morning.

Naturally, today was no exception. A steady stream of minor setbacks, annoying hurdles and seemingly insurmountable obstacles were thrust onto my path at several points throughout the day. I know all about the "Don't Sweat the Small Stuff" philosophy as it is one I try to live by. But sometimes, several little things = one or more big things when they all happen within, say, ten minutes.

I had my pre-admission testing for surgery today. That in itself, was fine. I didn't experience egregious waiting times or have any wrenches thrown into the works. The plebotomist had a hard time tapping a vein to draw blood but that's to be expected; it happens all the time. And there was the following exchange with the nurse who was making sure I was physically capable of undergoing surgery and filling in all the holes in what will be my chart:
"Wait, you said you're not taking any medication. What about Omeprazole? Aren't you taking Prilosec or something for your GERD?"
"I don't have GERD."
"Yes you do."
"No I don't."
Pause.
"The pathology report says there was signs of mild to moderate blah-blah-blah. That's GERD. And you should be taking Omeprazole."
"Well I'm not. I was supposed to take it for two weeks following the endoscopy."
*whipped out my copy of the discharge instructions after endoscopy*
"See?"
*pointed to Recommendations: Omeprazole twice daily for 2 weeks*
"I didn't even take it the whole two weeks."
Pause
"Well okay, but it says you have GERD."
"Lemme ask you something. Does the path report say the mild to moderate blah-blah-blah is in the esophagus or the stomach?"
"Oh no, just the stomach. The esophagus was fine."
"And I'm having my stomach removed. So the GERD will go with it, right?"
"Yes."
"Then, ok, you can let it say I have GERD."

Of the major problems I had to deal with, the first one happened at about 8:45am. That was when I was going to put gas in my car and realized that my Unemployment Compensation that I had been expecting absolutely counting on had not been credited to my account. Then later in the day, after I was almost back to my mom's to drop her off, I realized I forgot to buy these special cloths that I need to prep my skin the night before surgery. I went to a nearby hospital to see if they had them and they didn't. A few phone calls to specialty pharmacies was to no avail. So it looks like sometime in the next three days I get to drive all the way back to Philly, burn ten bucks in gas and another ten bucks to park the car, all for a five dollar packet of Chlorhexidine Gluconate cloths. (Unless my niece can score some for me: hint hint Megz).

In between the BS, there were some very high points. The afore-mentioned easy Pre-Admission testing being one. Mom took me to lunch too at a cute little eatery with lots of cheese and cured meat. Very reasonably priced for the quality and totally casual, as we weren't dressed well enough, imo, for 10 Arts or Union Trust, which were my first two choices.

Later, the kids wanted me to play Capture the Flag and I was like, yeah right, are you crazy? It's still 100 degrees outside and it's nine o'clock, I had an awful day, the last thing I want to do is run around getting bit by mosquitoes can't you just let me wallow in my misery? Sure, what are the boundaries. When the game was over I jumped in the pool. It was like 10:30 and the kids thought that was pretty cool so they joined me. Good fun!

So it's important to always end the day on a positive note, right? No matter how awful a day it was. Even on Wednesdays.

"Sabbatical From Work"

The title is in quotes because in a certain way, I have been on sabbatical from work since I quit my job at a publishing company back in '95. Many would argue that working in the service industry is as "real" of an occupation as could be imagined and for the most part I would argue that too. Except for the fact that I've been able to eschew such real world responsibilities as retirement planning, long-term disability insurance and having to go to bed before 3am. Much to my detriment, I might add, but that's another story.

In any case, many have been wondering what in fact I have been doing for employment for the past four months. The short answer is, not much. I've been working part-time (2.25 days per week) as a bartender at a local Golf Club. It certainly is work in an economical sense; being that my labor = a value at which I should be compensated = I can go buy some food and stuff from time to time. Believe it or not, I rather miss the frenzied calls for fifteen Car Bombs that I've railed against so often in the past. These Country Club folk can come across as so proper and well-mannered! But, it's not a challege to be paralled with, say, other things I am facing in my life at this time.

Yet in a very short period of time I've grown quite fond of both my fellow employees, and all their idiosynchrasies; and also the members, and all of their idiosynchrasies. For instance, I finally learned just today that one particular member, when he asks for "vodka" means "Grey Goose" ALWAYS and another who always wants his drinks in a pint glass or "go" cup and wants nothing whatsoever to do with the glass that at this club is used for a highball. This is great knowledge to have; should I actually need it in the future. But today was my last shift at the Golf Club. Though none other than my immediate manager knew it. It's kind of the way this thing worked out. I didn't think my departure required much fanfare, as I was still the new kid. And there was none of the typical "last day" activities surrounding it (cake, Jaeger Bombs, etc.). It was a quiet bow out to a short chapter of my life that one day might be reopened.

I have to admit that the chef unknowingly made a delicious departing meal this evening. He asked if I liked fresh tuna. I abstained from asking him that if by the word, fresh, he meant it was swimming in the Atlantic just yesterday afternoon, because I've grown accustomed to my husband's deep sea fishing excursions in the past and ...
well it was delectable in any case, accompanied by some whipped/mashed red skinned potatoes and grilled zucchini that had been plucked from its vine just this afternoon. There may or may not have been a secret scrumptious dessert later. I'll never tell.

Now it's finally time for me to start concentrating on the severity and depth of my surgery, what with the final day of work obligation behind me, coupled with the previous week of "nesting" activity. I have been cleaning the house like a mother hen, preparing my abode for the new arrival. That being, the new and improved, cancer-free me, I guess.
In the past few days I've decided that 40 is a very good middle point in life. Not that 80 is the end mind you, but I decided that everything I've lived up until this point is simply the FIRST half of my life. I've made some rotten choices and some excellent ones. But it was all just prelude to the NEXT chapter of my life; which will kick the shit out of the previous one.
Cheers!

Where did this come from?

I've been obsessed lately with tracking the actual heredity of this malignancy. Obviously, I inherited it from my father who ostensibly inherited it from his mother. From a scientific point of view I can't state the latter explicitly because genetic testing was never done on my grandmother who died of carcinoma of the stomach in the early 60's. Nor can I empirically prove that HER mother, (my great-grandmother) who died in the first decade of the 20th century, at the age of 46, from what was anecdotally in the family called a "tapeworm" (recently discovered death certificate noted carcinoma), carried the gene mutation either. For some things I require a Harvard double-blind study to provide me with evidence. This is not one of them.
I know it's important for families to recognize this and prevent death when possible. But everything seems to link to descendancy: find those who may be at risk to negate needless suffering ... yes this I understand. But I'm currently faced with tracing this back beyond my great-grandmother, find HER siblings' descendants to warn them, and of course there's that irrational part of myself that wants to find the actual ORIGIN of the mutation. As if it is some kind of native or gypsy curse that I can have reversed with the wave of a properly greased etheric hand.

Here it is Folks, Finally ...

In order to keep those who may be interested aware, I've finally started this blog for informational purposes.
- If you have no idea what I'm speaking of, just read on beginning with 1. below...
- If you are somewhat aware of my family's history regarding Hereditary Diffuse Gastric Cancer, but don't understand how it applies to me, you can skip 1. and go to 2. below...
- If you know all about it and just want to see where I am with this, skip to 3. below.

1. In the spring of 2001, my father was diagnosed with stomach cancer. Despite almost lifelong gastric problems, he had known for some time that something was very different about his most recent symptoms. In the 18 months prior to his diagnosis, he had at least two endoscopies plus CT and PET scans and was assured that everything was fine. It wasn't. By the time he had convinced a surgeon to open him up for a little look-see; it was too late. The cancer had spread. The biggest problem with any stomach cancer, let alone the hereditary type, is that people do not become symptomatic until well after it has metastasized. If you know anything about cancer, once "mets" have set in, prognosis is very poor.

After my father passed in August of 2001, one of my sisters began doing a little internet research about the possibility of stomach cancer being hereditary. After all, my paternal grandmother had died from stomach cancer and one of my paternal aunts had a diagnosis and removal of her stomach after a surgical procedure to treat her "ulcers" had discovered cancer instead. She (MY sister) found little, if anything, in the US going on at the time. Indeed, in the fall of 2001, prompted by my father's death (and possessing at the time, "gucci" health insurance), I myself visited a local GI doctor who assured me that "there's no evidence that stomach cancer is hereditary."

But my sister found out differently. There was a guy at the University of Otago in New Zealand, Dr. Parry Guilford, who had discovered just that. We eventually sent a blood/tissue? sample from my father off to New Zealand to test for the gene mutation. We received the news that my father had the CDH1 gene mutation at about the same time another sister had finally sought proper diagnosis and treatment for her stomach symptoms. Again, unfortunately for her, it was also too late. My sister was diagnosed in the Summer of 2002 and died in February 2003. Followed by a paternal aunt the following October and another paternal aunt the following spring.

In the few interim years between my father's passing and that of his little sister, there had finally been a few researchers in North America, who had taken up an interest in this condition. Thankfully, due to the diligence of afore-mentioned medical researchers and some new non-profit organizations, you can now find out a lot about this condition.
(nostomachforcancer.org and degregorio.org)

Since this is hereditary, it is recommended that close relatives of those testing positive for the CDH1 gene mutation also be tested. If a positive test comes up, the recommended medical course of action is a total prophylactic gastrectomy (removal of the stomach). Now, here's where everyone's eyeballs get big and they start to stammer when attempting to inquire as to how one can live with out a stomach. Because I'm weary of explaining how this is not only possible, but highly probable as well; just trust me, it can be done. It sux, but as I tell people, "It beats bein' dead!"

I have a sibling and a niece who, after testing positive for the gene mutation, have chosen to have their stomachs removed. In both cases, conventional "screening" (endoscopy and scans) showed NO abnormalities; however in both cases, biopsy of removed stomachs showed early stages of carcinoma. The CW is, if it causes stomach cancer, we'll just take the stomach out! Nya nya nya nya nya nya! I also have another sibling and another niece, who after testing positive for the gene, had abnormalities show up on endoscopies, because in both cases, they saw GI doctors who were aware of this particular condition and were able to screen properly for said abnormalities. Obviosly, in both cases, they had their stomachs removed.

Those of you who are die-hard fans of Grey's Anatomy might recall in Season 5, episode 17 a story about a woman with this condition. While it thankfully brought this condition to the attention of mainstream network TV, it did so in mainstream network TV style: omission of facts and severe bending of facts for the sake of increasing dramatic effect.

2. Last fall, I finally had the genetic test to see if I had inherited this awful mutation. Indeed I have. In March of this year I went to see a GI doctor who had experience with detecting this particular kind of cancer and BINGO! Or wait? What's the opposite of BINGO? In any case, he found some yucky cells. In case I need to spell this out, I have cancer in my stomach. So the stomach needs to go. Thus far, testing indicates no metastases; so if they are right, I get the stomach removed and there's no need for chemo or radiation. I'm pulling for that particular outcome.

3. I'm going to the best hospital in the world for my surgery and will be operated on by the best surgeons in the world. So I'm pretty sure everything will work out fine. It's July 12th. I will be in the hospital for about one week followed by a month or two of rehab at home. Don't even think about visiting me in the hospital. I will look like a monster. Have you heard of Cthulhu? And don't feel compelled to send flowers or anything. They cost money and they die. I'd rather you buy my family lunch or something. JK. Sort of.