insomniac

Jul. 16th, 2007 05:18 pm
arguchik: (meat chica)
i'm in another insomniac phase, this time seemingly sparked by the BBQ i went to on saturday. it's rather a long story. this should suffice: everyone there was either a sufferer, or caregiver to a sufferer, of PMP (the condition i'm at risk of developing because of the tumor that was in my appendix).

people told their stories. most of them have had the "mother of all surgeries" that is used to treat PMP. it was reassuring--because everyone looked healthy, etc.--but upsetting too.

the upsetting part is keeping me awake.
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i think i have decided to seek at least one further opinion about my appendiceal tumor. i've been doing research on the pmp awareness site, and have also been in communication with 3 different people in the support group that originated the site. [it's a yahoo group called "pmpbellybuttons," because apparently many doctors who do the MOAS (mother of all surgeries) end up removing the belly button along with whatever else. btw, i find the word "belly" very upsetting lately...i don't like that one of the colloquial names for this illness is "jelly belly," and i don't like this whole belly button issue one bit. please leave my belly alone! and no, it would not be funny to give me a package of jelly bellies as a gift. maybe in a couple of years. but not right now.]

anyway, i'm beginning to have some concerns about the surgical oncologist i have been seeing at UWMC. he's not an expert in dealing with PMP, and it turns out that he's actually had some pretty bad outcomes among the patients he has treated. nobody likes him, either. my concern is that it's very easy for a non-expert to miss the subtle signs of developing PMP illness on a CT scan. thus, i am starting to doubt whether or not i can trust the "all clear" he gave me based on my most recent scan, in february. detecting this illness early, before it has filled the abdomen with mucin and started interfering with intestinal function, is crucial. i think i should see an expert, even if it's just for peace of mind or confirmation that i'm following the most prudent course of treatment/monitoring.

let the insurance dance begin... my insurance is a PPO, and of course there are no experts in my provider network (it is basically limited to practitioners who are part of the UW medical system--yeah, not a great PPO). this condition is extremely rare, and "orphan" illness, so there aren't very many practitioners who even know about it, much less specialize in it. the nearest doc who's even close to being an expert is dr. holbrook in spokane. after that, it's dr. loggie in omaha nebraska, or dr. sugarbaker (the world-class PMP hotshot) in the d.c. area. none of these guys are in my network, obviously, which means the cost of seeing one of them is covered at only 60%. i also just realized that the maximum benefit for my plan is $100,000 per year, which would not cover the cost of surgery, should i need it.

i really need to get the fuck out of school and get a real job that offers health insurance for grown-ups.
Interesting.

Turns out Audrey Hepburn died of an appendiceal tumor.

Much like mine.

Except hers had broken open and coated her intestines with tumor and mucus by the time they discovered it--i.e. she was already in an advanced stage of PMP by that time. They estimated that the tumor had silently been spreading throughout her abdomen for at least 5 years.

I had no idea. I thought she died of colon cancer. Apparently, until recently (and perhaps still?) appendiceal cancers were dealt with as colon cancers, and reported as such for public health statistical purposes, rather than as a separate phenomenon.

I am gradually learning that, despite the fact that my appendiceal tumor was technically "benign" (because it isn't aggressive in the same way that an adenocarcinoma would be--it will not invade lymph nodes or bone, etc.), it should still, medically, be treated as a malignancy. It could still kill me, and it could actually kill me quickly, if the tide turned that way. Then again, my appendectomy might have been curative, and I might never experience a single further complication from it.

I'm not sure if Hepburn's tumor was technically malignant or benign, i.e. I'm not sure if it started as a mucinous cystadenoma (like mine) or a mucinous cystadenocarcinoma, or perhaps a signet ring cell carcinoma (particularly aggressive). But it wasn't invasive cancer that killed her, it was complications from PMP, as the tumor cells choked off her small intestine and left her unable to absorb nutrition.

Cross your fingers for me, and hope that I have somehow managed to dodge this bullet.

But if not...OK, bring on life and bring on death. They are never separate anyway. All I can do is to grab aggressively onto whatever life I have before me, whether it's 5 years or 55. It's scary, though. I'm sure I'll never stop getting scared about it from time to time, even if my CT scans stay clear for years and years. It's hard not to, it's such a huge tangle of unknowns.

I have been investigating the PMP Awareness website, and have also joined the PMP support group and posted an intro on their discussion list. I have heard back from a handful of people from the PNW area who have dealt with this cluster of illnesses. It is surprisingly comforting. Some of them are advising me to continue following a cautious approach regarding potential treatments; and some of them are saying, "Run, don't walk, to the nearest PMP expert, and get a second opinion about your CT scan results!" Apparently there are a number of people who have died because their doctors were too inexperiened to detect small tumors on a CT scan, and therefore mismanaged the case.
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PMP article

May. 16th, 2007 08:01 am
arguchik: (meat chica)
huh. the seattle p-i has an article about a guy who had PMP (pseudomyxoma peritonei. he had the cancerous variety). added later: PMP is the more advanced stage of the condition i was diagnosed with last summer ( i had a mucinous cystadenoma of the appendix, with micro-perforation). i have written to the reporter who wrote the article, to let her know that there are, in fact, doctors in seattle who treat this cluster of conditions. the thrust of the article is how frustrating and confusing it is to be dealing with an extremely rare condition, especially one for which the treatment is so invasive and gruelling. well, i can attest to that. there are no statistics, no signposts, to help any of us make decisions about our own treatment. last summer i was presented with a spectrum of options...i chose the least invasive option, for the moment, but who knows if this is the most prudent option? nobody knows. nobody can tell me anything. most of the info on the web is about people with either signet ring cell cancers of the appendix, mucinous cystadenocarcinomas of the appendix (the cancerous variety of the tumor i had), or cancerous PMP. there is virtually no information on the web about mucinous cystadenomas of the appendix, and the likelihood of developing PMP from such a tumor. i don't even know if a mucinous cystadenoma is a precursor of a mucinous cystadenocarcinoma, and thus a precursor to a cancerous PMP.

here's a link to the article, if you're interested in reading about it. the article itself isn't that informative, but the links to the PMP awareness site at the end of the article are helpful.
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