Thursday, December 30, 2004

 
quick blog as I am the keyholder for mothers' group this week, which means I shouldn't be later than necessary - hey, it's a lovely day, they can hang out in the park if need be.

hair report - starting to fall, at about the rate it did post-pregnancy. won't it make an awful mess when it does all fall out? it's not like it comes off neatly, like a wig. no, I'll leave a trail of brown hairs all over the house. annoyingly, examination shows that the post-baby regrowth was very healthy indeed.

got to the market minus baby this morning - starting to get back on my bike and into the pool, which is very enjoyable. there were so many babies there. now I don't look at single babies with envy - I look at sets of two or three. and I calculate how far apart they are. I am particularly jealous of the toddler-baby pairings. I have to start thinking of the advantages of waiting three-four years between kids: A. will be toilet trained, able to walk beside me, able to help a bit with the baby, in kindergarten some of the time so I can have afternoon naps, and so on. but he's also getting to the stage where he gets bored with the house easily and has to be entertained or taken out at least once a day - so a sibling soon is seeming more like a good idea. not that it's an option.

his latest clever thing: a gift came with a square of red cellophane. all by himself, he discovered that if he holds it up in front of his eyes, the world looks different. dh quipped: "you've got your rose-coloured glasses on". and he does. the world is very good to him.

(and I always think now: as long as his Mummy doesn't die...)

Tuesday, December 28, 2004

 
it had to come: links to a couple of breast cancer blogs.
brave women: though I confess to not reading too closely as I'm a bit freaked out by anything involving metastasis, holding on as I am to the conviction that it won't happen to me, that it's all gone (affirmation # whatever).

 
Lou Reed got me in the guts today.

I was playing on the floor with the baby while dh farted around on the laptop and our music came up randomly off iTunes.

and at one point I started feeling really sad. I started thinking about next year, about going past March, when our next baby was supposed to start, about how I'd deal with all the other happy mummies in my mothers' group (though there's at least one won't be going back for #2 due to genetic factors).

then I realised what was doing it: Lou, making a guitar and feedback sound like the loneliest violin in the improbably named "like a possum".

and don't tell me I should be happy with the one perfect baby I have. Even Julie, only a few days past a difficult birth, is grieving that second child. we are allowed to want what we want.

Sunday, December 26, 2004

 
what a good baby. coming up on two hours' sleep in the afternoon. not for me, of course, #%@#@ dog next door saw to that.

did I say he got trucks for Christmas? and a kind of funny nipple-covered rubber football? and that he's the happiest kid in the world?

yesterday morning (xmas day) the hospital where I'm being treated had a fire. all the babies in humidicribs had to be evacuated with all the other mums and babies, via the floor where I normally go (it has a bridge across to another building that I will forever associate with the trip to surgery). I now have no idea if I go in as normal in January for my next chemo. but that's a way off, hey?

lots of notes being taken in hard copy, can never be bothered writing them out. but I am doing a bit of "proper" writing. don't know if I'm feeling better, or if it's the end of bf-ing allowing my brain to kick back in. either way, it's quite satisfying to be creating anything at all.

Saturday, December 25, 2004

 
a quiet moment on Christmas afternoon (inlaws overseas, my parents not really that fussed, so we're just cooking an organic chook ourselves and sil will drop by too - isn't peace what Christmas is meant to be about?)

A. is having a great time - so pleased to see kids he knew at drinks this morning, and he's already scooted his new trucks around the lounge room, down the tunnel etc. also is playing music on his new whistle, which I happen to think is very advanced of him.

not much to say - my mind is still back and forth between not believing I can possibly die, to worrying about whether I'll get A. to school age or not.

meanwhile, I'm trying to enjoy having a house full of toys, wrapping paper and general familyness on our second Christmas together.

Wednesday, December 22, 2004

 
ew, ew, ew! (supposedly excited noises):

The sixth Harry Potter book will hit the shops on July 16 next year, it was announced today.
Harry Potter and the Half-Blood Prince will be published simultaneously in the UK, the US, Canada, Australia, New Zealand and South Africa.


about time, JK! about damn time.

 
actual tears of joy this morning. not for myself, though I suspect the prospect of a happy ending might be involved. but for the Grrl, whose GS has TWIN heartbeats. it's a long way to go, but I do have a good feeling for her this time.

 
I've been wondering about this woman: her high-powered lifestyle and marriage, the affairs, the TWO lovers and TWO babies (possibly love children) over 40, the interesting fact that the main scandal is about her nanny's visa (well, she'd need one, hey?), the fact that her Vogue-publishing dh is standing by her.

then at the end of this article I read that the dh, 60, had a vasectomy reversal so they could "try for children".

two things: A) if a MAN can have kids at 60, why not me at 42? (apart from my probably shortened lifespan, that is...)

B) whaddaya reckon? were the two lovers an attempt to get pg where dh wasn't able?

at least a little bit? subconsciously?

 
a symposium thingy that's interesting

 
what I'm picking up is that the hormones in pg are differently mixed to "pure" estrogen. they call it "opposing", where the progesterone and testosterone provide a kind of counterbalance.

feeling more positive about carrying a pregnancy myself, albeit in at least a couple of years. as long as I don't die in the meantime.

Tuesday, December 21, 2004

 
the one below is by Jeanne A. Petrek, MD, who appears interested in this topic.

 
Memorial Sloan-Kettering Cancer Center reported an 80% five-year survival rate for stage I and II (AJCC classification) patients after subsequent pregnancy. The study included 41 patients collected over 30 years. No detrimental effect of subsequent pregnancy was noted, even among patients with positive axillary lymph nodes or among those whose pregnancy occurred less than two years following mastectomy.


...this link is actually a very comprehensive review. it also includes this:

This was also the first study to report on estrogen receptor status, which was recorded in 70% of patients. The women with subsequent pregnancies had better survival rates if their cancer had positive estrogen receptors, which at first seems counterintuitive. However, this finding may be related to the fact that women with positive receptors have better survival rates and no micrometastatic disease.

 
possibly some studies: " the Memorial Sloan-Kettering project will not be able to ascertain the effect of pregnancy on outcome in the absence of a randomized clinical trial framework. Nevertheless, these registry studies, including a prospective study being conducted jointly by the Dana-Farber Cancer Institute and the International Breast Cancer Study Group,"

I am on a wild cruise through the Web for info right now; no time to followup and comment on each possibility. will return to it later.

 
the pregnancy-induced decrease in prolactin levels may account for the protective effect of early pregnancy against breast cancer.

 
a study on all this, including the startling news that young women were eager to, basically, GET THEIR LIVES BACK after cancer.

well der.

no, it's good that at least someone is looking at this. as it's crucial to my life right now, I can't understand why there aren't hundreds of studies into post-receptor-positive-pregnancy.

at least ONE would be nice.

(edit: this study actually refers to a couple of earlier ones. the interesting thing is that no study I've found shows a deleterious effect.)

 
draft law reform submission:

My situation:

I am making a submission to this inquiry because it personally affects me.

I am 38 years old. I was married in May 2000. We discovered we were infertile, most likely because of blocked fallopian tubes. At the end of 2002 my husband and I underwent IVF procedures that resulted in the birth of a son in November 2003.

We have eight embryos in storage at the IVF clinic, and intended to begin trying for a second child using those in early 2004.

In November 2004, on my son’s first birthday, I was diagnosed with a hormone-receptor-positive breast tumor and associated invasion of my lymphatic system.

I am currently undergoing chemotherapy, and my oncologist strongly recommends that as part of my treatment I become menopausal and not attempt further pregnancies. Research on whether pregnancy can trigger recurrences is inconclusive, particularly in the case of hormone-positive cancers.

We would not consider having another child for at least two years, when the likelihood of a recurrence will be significantly lower.

Even then, pregnancy would require me to stop taking hormone-blocking medication and to expose my body to hormones which could trigger or accelerate a recurrence of the cancer, threatening my life and depriving my husband and son of their wife and mother.

Technically, I am capable of becoming pregnant and carrying a pregnancy, but it would be dangerous.

In our situation, being fortunate enough to have stored embryos, working with an altruistic surrogate would be the perfect solution to the problem. One friend, who has completed her family, has already offered to carry out that role, although we have not discussed it seriously.

The current regulations in Victoria would make it practically impossible for us to have a child in this way, leaving me effectively either barred from having further children or forced to risk my life to do so.

I believe that changing the law to bring it into line with the best international practice described by the Commission’s review, and to show compassion for people in our situation, should happen as a matter of urgency.


My points on the consultation paper are below.

My submission is limited to the area I feel I have considered adequately, being altruistic full or gestational surrogacy, where the embryo is composed of gametes from the intended parents and/or sperm/ovum donors.

Surrogacy per se:

Altruistic surrogacy should be legal, and primarily a matter between the surrogate and the intended parents. It is a massive commitment of physical and emotional resources, and one that the individual should be able to choose freely. There is a precedent for this in egg donation, which is a smaller commitment, but of the same nature. Victorian women are more than capable of, with appropriate guidance, making the correct decisions in these matters in the best interests of any potential children.

Who should be eligible to access surrogacy:

I believe this point should be broadened to include prospective mothers for whom it is unsafe to carry a pregnancy to term. In its current form, the discussion paper only addresses those who are unable to become pregnant. There are many other women for whom it’s possible, but unsafe, to become pregnant; as in my case because of a risk of cancer recurrence, or as the result of abdominal surgery and other conditions.

Compensation for altruistic surrogates:

As a prospective parent, I would be ethically unable to use a surrogate if I was not allowed to compensate her for her financial losses, which could be considerable.

I believe that if any compensation at all is allowable for any kind of assistance with having children, then the actual amount is irrelevant.

If, for instance, it’s not illegal to pay an egg donor’s taxi fares to a clinic, it shouldn’t be illegal to make the same payment for a surrogate. And if that’s considered reasonable, it doesn’t make sense to bar the same kind of compensation for potentially thousands of dollars in medical bills, childcare costs for a surrogate, lost income and so on.

Compensation in non-monetary forms can and probably does already occur, for instance providing services such as housecleaning, shopping and food, particularly in the later stages of a pregnancy.

There may be a need for a formal process regulating compensation (eg channeling it through an officer of some kind) to prevent it becoming outright payment.


Who can be a surrogate:

The paper has already pointed out the anomaly where an infertile woman may act as a surrogate. This makes it more likely that the surrogate may have health problems of her own or her pregnancy may be higher-risk due to increased age and other conditions. The current regulations seem to increase the pressure for less suitable surrogates by “locking out” younger, fertile women.

Formalising arrangements:

Some kind of written agreement is probably desirable.

Counselling prior to a surrogacy arrangement does seem important, both to make sure all parties make the right choices, and to prevent surrogates being pressured into surrogacy.

Many infertility clinics already have excellent, well qualified counselling staff who might be able to fill this role. Good counselling and strict screening should minimise any problems over “custody” after the birth of a child, at least to levels lower than already exist in the state’s family court system.

Personally, I believe that children born of surrogacies should be able to access information about their origins, in the same way as children of donor gametes are, but I don’t feel strongly that this should be regulated, and the use of counselling and similar measures will probably make such rules generally unnecessary for altruistic surrogacy.

Birth certificates should be allowed to be issued in the intended parents’ names.

 
so I am finally getting the cancer treatment lifestyle under control. and it's shaping up OK.

this is the schedule for next year, phasing in from mid-January and in full swing for summer over Feb-March.

Monday: mini-maestros in the morning with people from mothers' group. fax vegie order in to greengrocer

Tuesday: sitter takes A. while I ride my bike to Carlton for physio on my arm and pick up non-greengrocer vegie items. possibly a swim Tuesday or Wednesday night after dh comes home.

Wednesday: unstructured, social stuff probably.

Thursday: Cleaners come weekly, dog is taken by walking service to his brush monthly. Mothers' group in the afternoon and every third Thursday, chemo.

Friday: A. has a place at daycare. a mix of crashing out and throwing up (chemo weeks), a free day (the week after chemo) and going to acupuncture (the week before chemo).

weekends: chemo weekends VERY quiet, the other two weekends I should get a bike ride and a swim in - maybe even take A. for a ride on the bike carrier I want to get him and me for Christmas.

there. who said cancer can't be fun?

I seem to be starting to fish around for things A. can do with other babies. it's only-child guilt, of course. it's not as if he'd even have a sibling until a year from now even without the cancer. but it will be a consideration to find him friends and peers. best-case scenario doesn't deliver him a sibling until he's over four, by which time he'll be much too big to enjoy bashing toys together.

Monday, December 20, 2004

 
feeling surprisingly chipper after a really, really bad night's "sleep".

maybe it's because I picked up my two new wigs this morning (though hair is still intact). it's amazing what spending really large amounts of money on yourself can do.

or maybe it's just a nice day and my baby and I will be going out for a walk and a chat with another baby/mum combo later on. whatever, I'll take what I can get.

have emailed work with the news. no response yet.not in a rush for that.

have also set up next year's schedule, making me feel more in control.

Monday=free/movies?
Tuesday=sitter/physiotherapy/market/swim?
Wednesday=free/swim?
Thursday=chemo or mother's group
Friday=acupuncture or chemo recovery or a full baby-free day, one week out of three

what a fun schedule. it will be good to have some time to myself, no matter how bonded to A. I feel now.

there are five balls. three are green, two are red. I want to fish a green ball out of the dark bucket.

Saturday, December 18, 2004

 
dh has done something to my PC which means it will restart in 3.15 minutes. meanwhile, chemotherapy...

yes, I threw up. but only once. it was very hard, sitting there with the nasty chemicals flowing into me. and I felt foul all night and most of yesterday. today, I'm just tired. hair is still intact, but for how long.

in fact, it feels like early pregnancy. this will get harder; next March will be hard (scheduled transfer of #2). mothers' group will get harder (second pregnancies so far = 2)

and I'm still so very afraid of dying, both of the pain and of leaving A and dh.

Thursday, December 16, 2004

 
why yes, I do start chemo today. and yes, I'm scared. the stuff I'm reading about ameliorating the fx only highlights everything from chills to hair loss to heart failure to bad skin to generally feeling crap.

all this for an extra 30% chance of surviving? you betcha. of course, there's an equal chance that I'd survive anyway and this will just damage my body. and a 40 % chance that I'll die, having put myself through six months of horribleness.

A. is being a delight - walking, crowing, bopping to the music on TV. damn, I'd like another just like him.

 
something bad may be happening at chez miscarriage

clearly, as my experience shows, what you "deserve" has nothing to do with it. but she does not deserve this - and while the embryos - yes, two - are still there, there's a chance her surrogate may still carry this pregnancy through. I don't pray, but if you're the praying kind, pray for her.

Tuesday, December 14, 2004

 
something to buy: a full review of the literature on bc and pregnancy.

 
a particularly paternalistic abstract that, despite discouraging people like me from having pregnancies for "socioethical reasons", does at least address the issue of subsequent pregnancies in women whose first cancer presentation was during pregnancy. the which studies are very hard to find.

 
bc management during pregnancy.

Friday, December 10, 2004

 
I have not linked directly to the prat's site, because I don't want him bothering me. but it's at family.org.au/update/2004/u20040503.htm

type in the www yerself. he bangs on about the gays. he has a problem. I would like to email him explaining that he is trying to stop me - a married heterosexual woman - having another baby. but I suspect there's no point. better to spend the time countering his idiocy in the political process.


 
have spent the evening reading law reform documents. turns out it's not illegal, just that you have to have an infertile surrogate. and they are thinking of changing the law. the problem is, politically, that all the focus is on gay couples using surrogates. let me say I think this is a fine idea if the couples are committed etc. but politicians won't. am working on making a submission, and possibly mustering others to do the same. it may be my only chance.

meanwhile, Bill Muehlenberg wins Prat of the Year for suggesting that a child having two daddies is like mutilation of a horrific degree. so if I die and dh gets a boyfriend (unlikely), should the riot police come in and snatch A. from his arms?

prat.

 
after seeing my IVF dr today, I started a new search, and found this - there is actually a review into gestational surrogacy going on in Victoria.

very interesting. but the legal process is slow and the political climate unfriendly to female choice.

I am picking up a very strong "don't get pregnant vibe". there is of course, no proof that it would trigger or accelerate a recurrence. it may even help. but with a hormone-sensitive cancer that the surgeon fondly calls "a nasty tumor" that first presented straight after pregnancy, would I be tempting fate too much?

I have not posted a link direct to the law reform site. you can find it via the lesbian information site linked above.

 
I missed Charlie arriving! sounds like it was what we in Oz call "a rough trot". but there he is!

 
Hi there,

This problem was the result of a post 'collision' between two Blogger
posts being published. Our developers are aware of the problem and are
working to build in additional security measures to stop this problem from
occurring again.


Sincerely, Steve
Blogger Support Team

/blogger email/

a collision! cool! I feel really special now.


 
reading about chemo is only scaring me. my heart in particular worries me - it's always been strong, and the damage that's likely to happen to it. if it wasn't for A, I'd seriously consider doing menopause only. this stuff is all so 18th-century. but half a mummy is better than twice the chance of none, for him.

yesterday he lost a balloon on the street. as it drifted off amongst the traffic, I thought "if it gets burst, I'll die; if not, not."

and it floated away and we crossed the road and I never did see what happened to it.

Thursday, December 09, 2004

 
a day of disturbed naps - in the car, being woken in the afternoon by next door's %%##* dog, now a late nap in the pram after mothers' group. a few seconds to blog.

I'm 38 1/2 years old. The radio told me today that 5 million children die in third world countries every year. Can this be true?

I have had 38 years of existence in one of the most priveleged socio-economic groups in the world. all I needed to be top of the heap was to be male. in many respects, I may well have fucked it up. this is standard midlife crisis stuff. I have been given a life, and not used it. I've simply stumbled through it. not enough carpe diem, too much hedonism. and so on. so I really, really cannot complain if I die. I am afraid of pain, and of course I don't want to die, but there are millions of people a million times worse off than me.

I do, however, want to be there and see my baby grow up. the world I've seen enough of, though you can never really get enough New York, or art, or books, or candlelit dinners with the man you love.. I have things I ought to have done, too, and I'm thinking about those. but what really bothers me is the idea of not being there for his first day of school, not seeing what he does to his hair when he's seventeen, not holding his hand when he's sick, not putting up with his high school rock band or art projects or whatever. not seeing his children. that stuff, I want, and badly.


 
the last time I saw my right breast, it was stitched and taped up, the nipple flattened beneath a plastic surgical dressing.

the next time I saw it, it was a handful of stuffing wadded into a stitched cotton pocket.

the time after that, it wobbled independently like an old-fashioned jelly dessert sitting in the nurses' hand as she explained prosthetic pocketed underwear.

I still have my hair. the wigmaker is tricking up a new lot for when that goes too: a plain brown hairpiece, just like I have, and a racier short red number with ragged edges which will please my husband.

Wednesday, December 08, 2004

 
The big winner was ibuprofen. Regular use of ibuprofen, as little as 200 milligrams a week, cut the risk of breast cancer 50%. In contrast aspirin, on average 325 milligrams per week, only lowered the risk 21%.

 
I could be on here forever talking about things. the baby is crawling/walking around neglected and wrecking the place, the dishwasher needs emptying and I have a visitor turning up soon. so life goes on.

every day for the next couple of weeks has an appointment: wigs tomorrow, IVF dr/dressing removal Friday, nothing Monday (we're off to join some friends at the beach for a break), oncologist again Tuesday, GP Wednesday, then the start of chemo Thursday next week. and I want to fit in a Chinese dr I've been recommended to as well.

the oncologist wasn't very interested in the question of whether the recent pregnancy hurt my odds, though he claimed it was factored into the prognosis he gave me.

he also said "don't go vegetarian on me", claiming he'd never had a vego patient not end up in hospital with low blood counts.

we got a copy of the pathology report - scary, and angering. the angering bit is the mastectomy report, completely clear. if she'd cut a bit wider, just 5 mm all around, it would have been OK. but I'm not supposed to complain about that. my deal is that I cop it, and the cancer doesn't come back, right?

dh asked the oncologist for side fx of the chemo (there are two types). he said: "tired and bald". hence my wig appt. not much I can do about "tired".


 
doing the sums - can't remember if Tamoxifen happens whether or not I'm menopausal (I think it does). anyway, it can't start until I've finished chemo, which will be May (39). then it's an absolute minimum of two years before I should come off it (41). then I may or may not get pg within three months (42). so the delay is more like 2 1/2 years, minimum, plus the risk of recurrence if I come off Tamoxifen and get pg (who knows what that risk is).

it would be much simpler if surrogacy was an option...

Tuesday, December 07, 2004

 
oncologist report: the final prognosis/plan

without any treatment, 10-year dfs (disease free survival) rate= 30 %

suggested treatment:
three months AC (which has risks of heart disease and leukemia, minimal). this has a 20 % chance of inducing menopaus.
three months dmc. this has a 60% chance of inducing menopause.

if menopause is induced, I have a 60% chance of making 10 years disease-free.

if the chemo doesn't induce menopause, they'll use Zoladex or possibly surgery to make sure I do go into permanent menopause.

there's also five years of Tamoxifen - ?followed by Fosomex? not sure of my notes on this - which will help protect my bones and block hormonal uptake.

radiotherapy will give me an extra few percent of chance on top of that 60%.

if I only did the three months - and didn't have menopause?? the odds are in the high 40s.

so I suppose that's that. a 10 per cent difference in survival is a lot. and that's the menopause thing that upsets me, and I need to look into it further. we see my IVF dr on Friday. the oncologist was not keen on another baby.

we have time. the three months of chemo is a given, the next three very likely too.

these odds are fucked, btw. and yes I'm angry and all the rest. no time to write about all that now. trying to get a lot of sleep...

Monday, December 06, 2004

 
this is the blog it seems to have come from. it's dormant, too. really, really odd.

 
wtf?

two posts down you'll see a post that, halfway through, turns into someone else's post altogether.

...off to Blogger to investigate...

 
soundtrack=Garbage, and everything else in our record collection. it was worth going Mac just for iTunes' "random" function, I think.

my little boy is WALKING!

has been for about three days now really. he suddenly abandoned his walky-horse and began tottering 3-4 feet at a time. now he can do several metres (pardon the mixed measures), turn corners and even carry things in transit. he's got that classic wide-legged gait, appropriately as he's just got "off his horse", and shrieks with laughter when he walks. this is a moment I've been waiting for - and I'm sorry to see it come. I guess in a day or three more he'll really be a toddler.

went to the movies with a mothers' group person today. hopefully another new friend. her little girl has sight problems (I hadn't asked before, though her baby clearly had some difficulties.) a third mothers' group person is coming over soon to trade IVF war stories and questions about second babies soon, too. a fourth is up to day 18 of her sleep school and her one-year-old has just slept through.

never assume that other people have it easier.

as you will notice, this post has nothing to do with cancer. oncologist tomorrow.

my Mac seems very keen on Marianne Faithfull right now...

Sunday, December 05, 2004

 
I've always felt that events were, to some extent, within my control. yes, I'm a stress bunny, anxious. but part of that has been the inner me shrieking: "don't just sit there, do something."

so now that they've finished hacking up my body, I have to move onto what I can do. postive affirmations aside, it's likely that cancer cells are floating around in me, looking for a place to set up shop.

to stop - or, I suppose, slow - them, we will be doing chemotherapy (to kill 'em off) and hormonal therapy (more to put them to sleep). oncologist on Tuesday will tell me more.

at the same time, I am feeling like sticking to amazing and inspirational experience. I really have no clue how he does it. He's awesome. The thing that Melody said about him having the most EQ is totally correct. "Boo, boooo" He's dedicated and serious, but makes our experience fonominal at the same time. One change I noticed is that he doesn't use his old jokes anymore. He doesn't ask if people brought their pencils to rehearsal or not. He trusts and loves us (the band) for who we are. He believes in us. The EQ sessions were informative, but the truth was that no one cared. Mr. Humphrey's speech was inspirational and things went particulary well I believe. During the meal times, we just began to sit with Athena, Erica and Vivian. We didn't sit with Iris, Fabian and them most of the time. It was coool getting to know them better. I realized that Vivian has a great sense of humour and that they all dislike ZZ!! hahaha thank god. Okies, the ZZ issue is simply way out of hand. What the fuccck is ZZZ trying to do?! Holy craaaaaps. Neways. The first night activity was the PanBethunian games and it was successful. We had fun and nothing in particular went wrong. I loved spending time in our room. Mich would always listen to Joey music and it sounded good =) and we would just chill and talk. Those were the times whereeeee I wish would never ever end. Things weren't looking that brin

 
I've always felt that events were, to some extent, within my control. yes, I'm a stress bunny, anxious. but part of that has been the inner me shrieking: "don't just sit there, do something."

so now that they've finished hacking up my body, I have to move onto what I can do. postive affirmations aside, it's likely that cancer cells are floating around in me, looking for a place to set up shop.

to stop - or, I suppose, slow - them, we will be doing chemotherapy (to kill 'em off) and hormonal therapy (more to put them to sleep). oncologist on Tuesday will tell me more.

at the same time, I am feeling like sticking to my no-dairy, mostly organic diet (I was already fairly organic when I got this, mind you. it seems to me that depriving this thing of resources is a good idea. and there is still the chance of a new cancer in the other breast that I have to deal with. more of the same may not help.

meanwhile I am drawing up a list of things that I need to take/eat/etc. soy products are still under a cloud. milk is off. melatonin is being studied for its preventative properties. I think I still have some, and I wonder if my poor sleep could be related to this? I might start taking it again. don't think you can buy it in Australia, but I suppose I'll get it from somewhere.

there are also the mysterious Conjugated linoleic acids, which may also slow down metastasis.

yes I'm thinking positively. it might all be gone already. but if it's not, if this is what I'll die of, let's make that a very long way off indeed, OK? and you never know. someone might come up with the cure yet...

Thursday, December 02, 2004

 
http://www.lookgoodfeelbetter.org/

Wednesday, December 01, 2004

 
recent stuff on pregnancy being OK, possibly even useful

so all I have to do is get through two years and maybe dh will let me have that baby...

 
another study showing diagnosis soon after pg is a Bad Thing... but the same study shows that being pg after treatment may actually help confer protection, if the pg is between 6-24 months of treatment.

eg, if it doesn't kill me, I can have another baby and it will actually help me live. maybe. who knows. it's all too confusing. and there are the therapies - tamoxifen etc - to consider. boy, the oncologist is going to hate me and my research.

or I can pick up more on the "protective or not" debate from this paper.

or I could just get some sleep

 
Subsequent pregnancy may confer an improved prognosis.


 
more evidence that pg itself won't bring the cancer back

the real question is: what are my real survival chances and should I have another baby? and will a two-year wait make that any clearer? do these studies track recurrences as well as "five year survival rates".?

 
similar Australian research. I can't read stats properly, but I think a factor of 1.9 means I'm 1.9 times as likely to die of this as a woman of my age with identical symptoms who didn't just have a baby. what I can't find is anything much giving possible reasons for this. my oncologist has some work to do, no doubt about it.

 
I'm starting to delve more into the footnotes on articles, getting to original research. which is not always nice. for instance, the research on women whose last childbirth was less than two years prior to diagnosis - we're talking significantly worse prognosis.

 
my laptop is 22 minutes from shutting down on me, according to the friendly reminder in the taskbar. good. I need to sleep tonight, tomorrow I'm home.

Getupgrrl of Chez Miscarriage and her gestational surrogate are PREGNANT. of course, this is only a start. NBHHY.

(wish I was allowed to have a GS. stupid laws, mumble, grumble)

 
like I said, amazing what passes for good news.

Miss N breezed into my room today and said "some good news at last". this was the news that there was no cancer at all in the breast that was removed on Monday. somehow I took it a little differently. the cancer had been right up to the margin of what she removed last week. the rest was completely clear. she says it's good because my total "mass" (which is an indicator of likely survival and already huge at 5cm) has not gone up. having the mastectomy will have made no difference at all to my likely survival.

I won't start on about regrets. no, instead I've made a deal with the God I don't really believe in: I'll cop this, I'll walk around for from years to months with cotton padding and grotesque plastic breast thingies in my bras, if you'll give me my life and another baby. I won't complain. I won't say it's not fair, I won't think about how a couple of months ago I would almost certainly have got away with the wide excision. I will try not to resent every other woman's breasts. but don't let it come back, and let me get through chemo and the next two years so well that there is no good reason why we can't have another baby. I'll be nearly 41 when the two-years-from-treatment deadline expires. (It's set to more or less give you a good chance of not having a recurrence). that's old. but it's not too old, especially for someone who's already done IVF and knows that it will be worth it.

I'd like to return to my regularly scheduled programming, and gradually I think I will, but the b.c. will keep being an issue here. I considered starting another blog, but every time I do that the previous blog gets abandoned, and I kind of like this one.

A. and dh came in this afternoon and we went for a very slow walk around the park. this time has indeed been good for dh's bonding with A. He'll have to go back to work soon, and I have to start organising support for chemo etc. but all in all, dh has been pretty good. he hasn't looked at the scar yet (hell, I've only looked sideways at it in a darkened room, down my chest, not in the mirror), but I believe him when he says he'll still love me and want to have sex with me. he's been tired and under pressure and of course I've been no help at all. funny thing, this marriage business. we really are in it for the long haul. I'd say until death do us part, but the official position on death is that it's at least 35 years away.

got some visitors coming in tonight. gradually feeling a bit more rested, if not strong. one day after all this is over I will owe some friends some heartfelt thanks and whatever I can do for them - though one hopes they'll never really need my help.

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