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.