(no subject)

[the_rck]

Why on earth do these genetic counseling forms need my step-mother’s date of birth, date of death, and cause of death? (She still alive, but still, WTF?) Or my brother-in-law’s dates?

And I really don’t want to call my 25 year old half-sister who I don’t know very well to ask if she’s ever had a miscarriage. I think it’s pretty damned unlikely since her mother did sexual advocacy for people with disabilities. I can’t imagine her letting her daughter be ignorant or without access to birth control. And, even if she had, my sister spent four years at Barnard, living in New York City. Accidental pregnancy seems unlikely and intentional even more so. I just don’t actually know, and I normally only talk to my sister twice a year, Christmas and her birthday.

Oh, great, I have to ask all of my female cousins about miscarriages, too. Do I really need to ask the sixteen year old? It’s not actually impossible that she has. It’s just very unlikely and also not something that I’d think she’d be comfortable with being asked even if her parents don’t know (she’s my cousin’s daughter who was adopted by her father’s parents, my aunt and uncle).

I can pin down the year and month my mother’s mother died because it was a day or two after Hurricane Georges ripped through the Florida Keys where they lived. She was too sick to be evacuated, and the roof came off of their house during the storm. My father’s father died the same year, but I can’t remember if it was earlier or later in the year. I might still have the handouts from their funerals, and I expect those would give exact dates (and dates of birth which I also need).

I wish I still had access to AppleWorks documents because I did a relatively detailed family tree for a class fifteen years ago, and that had things like my father’s mother’s maiden name (I remember what it was but not how it was spelled) and everyone’s dates of birth. It would save me a lot of phone calls and digging. I’ll still need to ask Mom about causes of death for Grandpa, Uncle Bill, and Aunt Donna, but I can at least do that by email. Mom does email. Papa doesn’t.

I also only know birth dates for one of my aunts and uncles (one aunt was born on Christmas Day).

And this is the first form. Other forms in the packet ask me to get them copies of the pathology reports for everyone in my family who’s had cancer of any type. I can get my sister’s, but it’s been eighteen or so years since my mother’s mother and father’s father died, and I’m not sure anyone actually did any pathology work on my grandfather’s brain tumors. They didn’t remove any of them because there were dozens (They stopped scanning after the first couple of layers because they’d already found more than twenty).

Comments

[heavenscalyx]

The whole "taking a pedigree" thing tends to try to be exhaustive, but honestly, I don't know why they'd need all that information for people not genetically related to you or Cordelia. Heck, when we were taking family histories in my genetic counseling rotation, we were happy to get information on the parents and sibilngs.

I would consider the forms wishful thinking on their part, and just provide what you have access to.

[the_rck]

There is some information I probably could get, but I am not willing to call up my 90 year old grandmother and say, "By the way, did you have any miscarriages?" She can probably get me Grandpa's pathology reports and other medical records (or, more likely, my uncle who she lives with can do it or my cousin who lives nearby can do it), and I'm willing to ask for that because he died of cancer, but beyond that...

I have no idea what my mother's father died of, apart from, you know, being 93 and just not waking up one morning. I'm not sure they bothered to check to see if it was a stroke or heart failure or what. The doctor had pretty much been saying that he could go any time for years.

[heavenscalyx]

Periodically, I'm reminded exactly how weird my family is about being open and chatty about things like miscarriages and causes of death. Or perhaps how weird I am that I poke people until the information falls out and always have. :)

[maramcreates]

I'm not sure that it's entirely weird unusual, my family's all up in everyone's business. I even know about when some folks consummated their marriages....

[the_rck]

For my family, well, on my mother's side, it's that my mother has a very weird attitude about ever talking to her brothers. There's a feud between her and one of her brothers now, over how things went with their father. But my mother has always taken the attitude that visiting and calling people is an imposition. She was dead set against me inviting my aunts and cousins to either my wedding shower or my baby shower, to the point of refusing to give me addresses/phone numbers. And she would rather have had me spend thousands of dollars on an attorney for my disability case than let me talk to my uncle who's an attorney who lives an hour away in the same state I do.

On my father's side, it's more that people don't talk about things. My aunt and uncle, the ones that my grandmother now lives with, felt that they were doing something special when, fifteen years ago, they promised me that, if anything at all happened to Grandma, they'd let me know. They knew that she wouldn't.

I don't know if Grandma had any miscarriages. My father and his siblings are 2-3 years apart which could be family planning, and there are three of them which is all their house would have held. My father's only sister vowed never to have children because she thought it would wreck her figure, and she doesn't seem to have ever reconsidered that. (I know that last because she told my mother as much.) At any rate, I don't think that aunt had any miscarriages. That leaves my sixteen year old cousin, and well, yeah, I'm not asking.

[maramcreates]

My maternal grandmother had quite a few miscarriges, stillbirths, and SIDS deaths (6 successful pregnencies out of 12 - well, technically, 7 successful pregencies, but that was from another marriage), and the 6 surviving kids were in born between 1945 and 1958 (putting her at the average 2-3 years between kids range you've mentioned above). She was a special case though (her parents had only 1 successful pregency out of 13). Of her daughters, only one had similar issues (my maternal aunt), which involved 4 successful pregencies out of 6. None of my cousins have reported anything regarding this, but I bet my mom knows (my mom's the matriach in her extended family, so she gets the news). It's harder to know this sort of thing on my dad's side (they're much more closed-lipped about many things), but I don't really talk to him, and I really only have one paternal aunt (and she's not the sort of person to share these details with practically anyone).

[the_rck]

My mother, because of her genealogy work, has cause of death information going to some of my great-great-grandparents on her side. Admittedly, one of those people is simply labeled as dying of 'cancer' without any type specified (his wife died of measles). I didn't know, but one of my great-grandfathers apparently died of black lung.

I think I'll just print off the email and attach it to the packet when I send it back. I can't imagine that the additional information would be a bad thing, just something people are unlikely to have.

[alexseanchai]

Why would most of that be relevant?

[the_rck]

The stuff about my step-mother is absolutely not relevant.

Stuff about my blood relatives is because we're trying to see if there's a case to be made for a genetic tendency toward cancer in the family. It's entirely possible that what's going on with me and my sister is something new, a mutation in one of our parents, but if, say, my grandmother had a sister who died of breast cancer, it would be extremely relevant. Cervical, uterine, ovarian, and prostate cancers would also be very relevant to a genetic tie for breast cancer.

I do need to talk to some of my female cousins because, if this is genetic, they may be at risk. Two of them are near my age, and two of them are in their late twenties. Me and my sister both getting breast cancer in our forties means that the younger two might need to start screening mammograms fairly early, and that the older two should get one immediately if they haven't had one in the last year.

[alexseanchai]

Understood.

[falena]

I don't understand why they need information for non-blood relatives, huh.

[the_rck]

Who knows? Maybe they don't actually want it but have just set up the form in such a way as to imply that they want it. The instructions are extremely vague, to the point of non-existence.

[kyrielle]

Honestly? I'd just write a manual "unknown" next to anything I didn't know about any non-blood relative. For blood relatives, I'd consider how hard the info might be to get and how relevant it seems likely to be, and then either get it or write "unknown". (They can always ask if you can dig deeper if they think it's really germane, after all!)

[adrian_turtle]

Write "don't know." The testing agency is doing medical research, as well as trying to diagnose you. They want you to help then with the research, but don't drive yourself crazy. (Triggering anxiety makes that uncomfortably literal.) For all they know, you have one of those families where women keep miscarriages entirely secret. Or where distant relatives don't know each other at all. (Maybe something like "didn't dad's brother move to Portugal and marry his collaborator? Did they ever have kids?")

[the_rck]

There are definitely some don't knows on there already. I don't think there's anybody left, for example, who would know if my mother's mother ever had a miscarriage. And my mother's only sister had Down's and lived out her life in institutions and group homes. She's been dead for about ten years now; I don't think she made it much past fifty, but from what I gather, that was pretty much expected due to other health problems that went with the Down's.

I have concluded, though, that I need to take an Ativan before I work on these forms. Last night, spending two hours on them left me with a headache (Tylenol helped) and complete exhaustion. And that's without calling people up and asking impertinent questions.

[velvetwhip.livejournal.com]

Oh my god! That is... quite an array of information to expect someone to just be able to jot down on a form post haste. It would take me DECADES and a team of private investigators to answer questions about every single branch of my family tree.


Gabrielle

[the_rck]

At this point, I think I'm going to talk to my mother, my father, my surviving grandmother, my aunts by marriage, and my female cousins. Well, and the sister my age since I need her pathology report.

I think the farthest they want me to go is my cousins. They're not even asking about my great-grandparents (though information on my great-grandparents would likely be easier to come by than on my cousins).

[trepkos.livejournal.com]

This all seems like a ridiculous amount of info. How are step-parents relevant at all? Are they going to do an actual genetic test? Or is this instead?

[the_rck]

I think that this information is intended to help them make the case to my insurance company that doing a test at all is justified. If I can't get insurance to cover it, the test is like $3000, and I'm pretty sure we can't afford it. My mother might pay for it simply because it's important for my daughter to know; Scott's parents might pay for it for similar reasons.

23andme will do the testing for a lot less money (I think it's $300), but their results are not considered reliable for use in research studies and medical assessments.

[trepkos.livejournal.com]

I see - so this is basically because the insurance company wants to put you off even applying for it ...

[evalerie.livejournal.com]

Thinking about this some more: Is the goal that the medical system would do different treatment of you if they knew that you had a particular gene? Or is your goal just to find out, for your own knowledge, if you have it. Because unless medical treatment would be different based on this information, maybe it would make more sense to go with the much cheaper (and more informative!) test from 23andme.

[the_rck]

I'm very specifically interested in contributing to medical research into the mutation of PALB-2 that my sister has and that I might have. If 23andme showed that I had it, that wouldn't be considered valid for medical researchers to use as data. It's not going to affect me except possibly to get my doctors to order more frequent mammograms (but it might affect Cordelia), but me and Laura both having that gene would be taken by researchers as fairly suggestive evidence that the 'likely benign' label on that variant isn't accurate.

What I am considering is, if insurance won't cover it, doing 23andme first and then trying to get together the funds for the official test if 23andme says I have it. At the very least, if 23andme says I have it, Cordelia will need the official test so that her doctors will actually accept the results as valid.

[evalerie.livejournal.com]

That makes sense.

[evalerie.livejournal.com]

Not that I get a vote, but I vote for you to leave out the answers to anything you don't want to answer. I don't think you need to go calling up anybody and asking them about their reproductive life. I think it's fine to go with just what you have documentation for and what you can remember, and to put "??" for anything else.

I'd be happy to try to get the information out of Appleworks documents, if you would like.

[lady-of-mists.livejournal.com]

I'm with evalerie on this one (again, not that my vote would count for more than reassurance purposes). Give them what you have and are able to provide right now. If they want more, they can ask and you can ask them for an explanation as to why they would need it.

I don't see why they would need to be exploring your non-complete blood relations anyway unless they were doing a FULL-ON research study on your family in particular -- or unless they think it is something related to your father's side of the family.

[evalerie.livejournal.com]

Are any of these useful for opening Appleworks documents?

http://www.techradar.com/us/how-to/computing/apple/how-to-open-appleworks-files-in-yosemite-1295242

https://discussions.apple.com/thread/5455245?tstart=0

http://www.cultofmac.com/248546/convert-system-os-9-appleworks-6-files-to-os-x-pages-files-os-x-tips/

http://www.macworld.com/article/1166370/open_old_docs.html

It sounds like LibreOffice might be a good starting point. It's a free office suite of programs. I have a copy of LibreOffice installed on my computer, so I'd be happy to try having a go at your files with it. Though there seems to be a Mac version of LibreOffice, in which case the easiest option may be for you to install that and then use it to try to open your files.

Sorry if I am just going over old things that you've already tried. :-S

[the_rck]

Does LibreOffice handle mixed graphics and text documents? All of the files that we need to convert to something usable are Draw documents rather than spreadsheets or text documents. The specific placement of the text and the drawn elements has to be preserved or the document is useless, and we really, really want to be able to edit both the drawn elements and the text.

Basically, the one I'm thinking about right now is a family tree going back to my great grandparents, but most of what we've got is printable possessions/powers cards for PlotLuck, and without the ability to read those, I will pretty much have to remake the dratted things from scratch. Being able to read only would still mean needing to recreate the documents, but I'd at least know what the originals contained and be able to toggle between windows as I worked.

My machine doesn't run Yosemite. We jumped several versions to El Capitan. I don't have any software running under that that actually recognizes AppleWorks 6.0 draw documents as openable. The system thinks they belong in Keynote, but Keynote says, "Um, no. This is not a readable file."

But there's no reason I couldn't email you a couple of files to see if you can do anything.

[the_rck]

Just did a little poking around. Everything I'm finding says that LibreOffice can't reliably open AppleWorks Draw documents and that, if it does open such a thing, the elements are not necessarily going to be where they were originally and are not necessarily all going to be there.

We've been able to convert our text documents. It's the dratted Draw documents that are a problem, and we've got twenty to sixty documents per LARP scenario.

[evalerie.livejournal.com]

Well, if you want to send me some sample files, I'd be happy to have a go at them and see what I can do.

Did Apple really name a version of their operating system El Capitan? Oh my!

[the_rck]

Apple did in fact do just that. At least if my 'about this Mac' is to be believed. ::laughs::

I've sent you a couple of files. There's no rush. I've got other things keeping me busy this week.

[snogged.livejournal.com]

Tell them what you know and write N/A for everything else.

[the_rck]

I guess I feel like, if I can find out, I should because it's not just my family history-- It's my daughter's. More information may help her make better decisions later on.