Sunday, January 30, 2005

took A. to the pool with dh this afternoon. it was lots of fun, floating around with him in the warm, shallow water. not so much fun listening to other parents chat about the gaps between their babies' ages and what age gap is ideal.

I try not to be bitter and resentful. I know others have it worse than me. but wasn't one lot of IVF and the associated crap enough? why this? we should be transferring next it could be anything from 18 months to five years to never to the next pregnancy, mine or a gs's.

they were really quite nice people, the other parents, and they admired A. it's just this feeling I have of a sort of dirty secret when I keep my mouth shut during such discussions.

not unlike when friends' friends ask me, as they did this morning on a bushwalk get-together, "how've you been" and I say "good!" like I mean it.

I'm not good. I'm doing chemotherapy. but I am good. I have a lovely baby, a lovely dh, a good life, I'm writing, I would be happy if it weren't for this black cloud. oh well, at least I'm appreciating the bejesus out of every little second of it. possibly too much. it's kind of relaxing to be able to take things for granted. and I can't.

I know it's a bit obsessive of me, but I love a good 2ww. go girl!

Friday, January 28, 2005

as I can't say this to the person concerned, I have to say it somewhere.

it's really unfair to other infertile women to put up a link to "our babies' website" in your discussion group signature, if the link in question contains a photo of a clearly dead foetus. two of the babies on the site were on life support - rereading her signature, one survived. but the third, which I only glimpsed for a second before I closed the window as fast as I could, wasn't, and was never going to make it.

I ache for her. I can understand having the photos. but putting them where other people may stumble over them without realising what they're in for - not fair.

I feel awful.

not a good day. I've been pretty good so far at keeping the dark thoughts at bay; sure, it's been hard to sleep sometimes, but otherwise I've managed.

but today real fear got me. not just for leaving A., but for myself. I guess it's this probably meaningless ache in my armpits (could be menstruation, could be the cold I have, could be anything at all) that's freaking me out. I have a followup appointment with my surgeon next week. I suppose checkups will always be scary.

I have no good reason to think I'm going to die. then again, I have no good reason to think I won't.

scary move: emailed a dr at a Canberra clinic about whether I'd pass their guidelines for surrogacy or not.

and used my real name. I think you have to be serious to be taken seriously. but scary.

meanwhile, annoying aches in armpits continue. have made checkup appointment for next week. and my period is so still happening. all that oestrogen flooding my body...

Wednesday, January 26, 2005

hope may spring eternal, but it does make it hard to sleep at night.

there's a ghost in my house. it's a very tiny ghost. I don't think it's even walking yet. just crawling, maybe, or perhaps just lying there with those helpless thin new-baby limbs waving about. it's haunting me as well as any ghost could though. not bad for something that hasn't been born yet.

Sunday, January 23, 2005

thymewise: a part-infertility blog. I haven't tracked down what kind of cancer she had, but worth a read for me later.

another bc survivor (can I call myself that yet) considering surrogacy.

shortcomings of past studies

surroigacy story link

slight ache in my armpits = major anxiety.

dh is still not convinced about surrogacy as a real option. nor is he willing to commit to me having a baby when he's in his 40s. even more anxiety. I have those embies, there must be a way to make a baby from them. it's a particular baby. the blueprint exists, I just don't have a builder.

this morning we took A. to a children's farm. a few chooks, a very docile cow, a large curious pig. he loved it. pointed at everything, chased the chooks.

now Playschool is finished and I must stop writing and care for him.

Friday, January 21, 2005

the joy of childcare: I'm now coming up to TWO HOURS at my computer, spent cleaning up old stories and poems and giving them one more go at the literary journals.

as I walk around the house fetching materials, I notice; no one is clinging to my legs. I don't have to worry about stepping on anyone. I can leave cupboards open. I can start a thought with a fair chance of finishing it.

I do feel a tiny bit guilty. but this is FUN!

Thursday, January 20, 2005

surrogacy is legal in Canberra. Sydney IVF (google it, I don't want to link to it) has a clinic there, and surrogacy guidelines. which contain this:

"4.3 The genetic mother should be suffering from some medical condition making pregnancy unlikely, but which is unlikely to reduce the ability to care for her child, or reduce her life expectancy until the child has at least reached majority. Without restricting the foregoing, examples of such conditions are absent uterus, diseased or damaged uterus, abnormal uterus, repeated failed IVF attempts and repeated miscarriage."

so if similar guidelines come in in Victoria, or we tried to go to Canberra, I'd be stuffed. what's "unlikely"? 10 per cent chance of recurrence? five?

grrrr. paternalism again.

have spent half my morning free time posting on various bulletin boards to encourage people to make submissions to LRC, so this is quick:

I spent 45 minutes in there - they haven't had many potential IPs, so were very interested in me: exhibit A. A. himself was very good and charming, and I did point out there were 8 more like him in the freezer.

issues covered included: GS vs TS on the question of relinquishment. compensation (of course). illogicality of laws that allow donor eggs but not GS. pre-surrogacy social worker checks. brief allusion to the forces of evil, aka Australian Family Association. my willingness if needed to talk to politicians (who generally don't have much imagination and need a real person to see). how often custody cases develop after surrogacy. whether or not surrogacy is exploitation of women's bodies and whether women can make up their own minds. and so on. hopefully productive.

if I don't die, I am having that second baby, as long as the 8 embies have one good one. I've decided. whether it's another baby at 44 or GS sooner, it's happening. I don't really care about work. we can afford for me to stay home. I'm getting into my writing - sending poems and stories to comps and journals - and will be quite happy even if I have ten years of home-with-babies-and-toddlers life.

shopping for a bike trailer for A. this weekend. as long as I don't die, life is good.

ps: if you happen to be a potential Victorian IP or GS or TS, email me or just talk to the LRC. if you don't ask, you don't get.

Wednesday, January 19, 2005

meeting with law reform bod this afternoon, to push my case for legalisation of surrogacy. have been very cool about it, writing lists of points etc. have just posted on my bulletin board to a cyberfriend also struggling with lack of baby #2, and realised I have a further challenge: not to cry in the meeting. or will that help?

the grrl is making me cry again. not with her own news, this time, but with something I could as well post here: a dying poem from Raymond Carver: And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

Monday, January 17, 2005

surrogacy service in the US. just for interesting many factors to consider. dh is by no means convinced. I've ordered a couple of books from Amazon on this too.

baby is super-sleeping. good, good boy. grandparents due in 1/2 an hour.

I'm in charge of insurance for our mothers' group, and while I was typing up the names I noticed: the couple that is most "traditional", in that he seems to be in charge of money etc (he's quite nice), is also the couple in which she's changed her name. then again, maybe she just had a dodgy "maiden" name.

Sunday, January 16, 2005

the grrl - or her surrogate - have lost a twin. they still have a baby in there, at nine weeks. I am giving up trying to attribute meaning to these events. I just pray for the rest of the pg to be normal.

having bad days myself, as a few home truths sink in. not sure how to handle the real risk of dying - ignore? process? panic? it's not a risk until something bad happens, right? but I can't know until after that thing hasn't happened.

Friday, January 14, 2005

first day at childcare today!

only a few hours - I stayed for 1/2 an hour, then put him to bed and he actually went to sleep in a new place, with other kids sleeping around him!

when I came back at lunchtime he was being spoon-fed veg and pasta. he just looked at me and pointed and kept eating! no tears, no fuss. what an excellent boy he's becoming.

and he slept 13 1/2 hours last night (with one cry). pity I woke at 6 am and couldn't sleep...

speaking of which, it's 10.20. I should be in bed. yawn

what did I do wrong? (apart from waiting four months to check a lump!)

was I not grateful enough? I thought I was. I knew my little boy was a miracle. I cherished every second. what, exactly, is it that means I - and he - deserve the threat of him growing up motherless?

I know there is no answer. that we are tied to these bodies and things just happen to us, and our minds/souls/hearts have to make sense of it - or not. but still I am angry. I was grateful enough. I know I've been lucky. why punish me?

/bit of a sook/

darn ivf dr. she's so nice. so understanding.

and so upfront.

she is quite sure my onc. really doesn't think I should have another baby. she thinks five years is the minimum I should wait. she says all those studies are skewed, either through mistakes in allocating hormone status, or exclusion of women like me.

I did sob a little bit. I do try not to - it doesn't seem to help me much to cry, it doesn't get me anywhere.

but it's looking more and more like if those embies get cooked, it won't be in my womb. not when I'm 44 with a six-year-old. dh wouldn't wait that long. and I don't know if I can. and even then, it might be risky.

meeting with surrogacy law review person on Wednesday...

(wig update - wore it in PUBLIC! felt like a drag queen, but actually looked OK. I think).

Thursday, January 13, 2005

we have handclapping! to the music of "old McDonald"!


chemo report - feeling crap but not actually vomiting. which is good.

hair=even less.

Tuesday, January 11, 2005

they gave me the wrong drug. seriously. I looked up halfway through chemo and called the nurse over and gently said "should I be worried that it's not my name on that bag?".

at first she took a no-problem approach, not saying much except that it was more or less the same. I asked if the dose was the same and she said something like it was. then later, once the other patients were gone, I got the full grovelling apology. I think it really shook her up. she'd rung my dr (of course) and he'll be ringing me tomorrow.

I got most of a 170mg(?dose? that number, anyway) of Epirubicin, which is very similar to the 90 or so mg of adriamycin I was meant to have. I have been assured it won't make any difference to the treatment. it might even make me throw up less.

the nurse concerned - a lovely, jolly thing normally - said this has never happened to her in 24 years. at the time she hung up the bag, she was engaged in conversation with another nurse about the failings of college-trained (as opposed to old-fashioned hospital-trained) nurses. my dr is supposed to call me tomorrow and I assume the poor nurse will have to fill out a lot of forms and there will be a How Did This Happen? inquiry.

I wonder if the other woman, who strangely enough has the same initials as me, got the right stuff?

in other news, A. had his new babysitter today. he was fine, of course. that was the morning, when I went to physio - did I mention my arm is HEAPS better? - in the afternoon a little friend and his mum came to visit until dh came home. and yesterday we sat at the child care centre for 1/2 an hour. as expected, he ignored me and ran around with the new toys and other kids. he'll do three hours in there on Friday while I go visit my IVF dr and, I dunno, have a coffee and start my novel or something...

also, today he pulled the fishtank (smallish,plastic) and a side table down on himself. this was because the sitter and he "admired the fish" this morning. I should have listened to the little voice in my head that said "that means he'll be fish-mad for a few days". instead, I had 10 towels to wipe it all up, a screaming (unhurt) baby and a flopping fish, who is now living in a bucket in the laundry.

also also, we have rabbits. two. in a hutch. he loves 'em. they're being rabbit-sat for a while, as if I don't have enough to do. the friend who left them here has done so much for me, though, and was going to drive for an hour to leave them with family, so I insisted. they're kind of cute and floppy, but I'm not picking them up. they scratch.

had better have my shower and get my semi-bald head onto the pillow. I have what dh calls a reverse mohawk. I'm sure you can picture it.

Friday, January 07, 2005

A kind reader (thanks, G!) has sent me a copy of the Cancer article by Aman Buzdarm that I was wanting to see. again, it shows no negative fx of pregnancy. the women who got pg tended to be slightly younger, less likely to be e-positive and with slightly better prognoses than me. I can't really work out from reading it how they allowed for the "healthy mother effect" of only those less likely to relapse choosing to get pg. there is no point going over this again with my onc - he doesn't want me to get pg and there's nothing that will change his mind. it's quite clear that it won't really be safe until well after my treatment, and then I'll have to interrupt my Tamoxifen regime, which is probably my biggest worry - actual pregnancy is seeming almost like a desirable option at this point, survival-wise.

it also pointed out another study... I guess I'll just keep collecting these and talking to people. years to go.

dreamt the other night that a few women in my mothers' group had had their second babies. so had I - a boy - but he was nearly a day old and I hadn't named him yet.

today I also sorted out all the baby stuff in the roof, put the girl things aside in another suitcase and generally filed it all under "pending" so I won't have to deal with it for a while.

Thursday, January 06, 2005

it's my neutrophils. I had never heard of them before, but at 0.6 they are too low to do chemo today. so my social calendar is in disarray as we re-schedule not only next week but the following four cycles or so. and I have to have a shot of something or other that will cause bone pain and eject neutrophils into my body after each chemo now.

neutrophils are useful things. this person is kind of hung up on them.

in other news, my onc. is unmoved by the research on post-bc pregnancy and still says don't do it. I did have to assert myself somewhat to make it clear what I was asking about natural vs supported pregnancy. he mentioned that some women "break through" zoladex and still ovulate. which would be a real pain, as it would mean taking my ovaries out. so in a sense I might be better off with menopause and supported pg than no pg at all.

or of course with surrogacy. the head of the body which is to report to the state government on surrogacy has agreed to meet me, having seen my submission. beauty. anything I can do to help things along, even if meetings with professors are kind of demanding on my current self, busy and woolly-minded as it is. I'm sure I'll snap into professional mode when it's needed, though.

Tuesday, January 04, 2005

email: Aman U. Buzdar (

yet another link on superior survival rates with this EXTREMELY interesting quote: "Ezzat et al8 reported results from another study that included comparison with a control group and also found a nonsignificant trend in favor of the pregnant patients. Their study was limited to patients whose breast cancer was diagnosed during pregnancy. It might be expected that reduction in risk of death associated with any protective effect of pregnancy would be less marked in these patients, because the tumor had by definition been diagnosed despite pregnancy, and in most cases would have progressed during pregnancy. Despite this, a slight favorable trend for patients diagnosed during pregnancy was found."

the abstract for that last reference doesn't mention subsequent pregnancy, and it was a very small group, but I might need to come back to it later.

Doctors say a new drug called Arimidex can keep cancer from recurring, and it works much better than the current leading medication.

Doctors say Arimidex is better than Tamoxifen at warding off breast cancer tumors.

Dr. Aman Buzdar,of the Anderson Cancer Center said, "Now we can clearly say that Arimidex is more effective, and also cuts down on the recurrence."

New studies show that Arimidex may block 70 to 80 percent of the most common tumors that grow in post-menopausal women, while Tamoxifen, the current leading treatment, only blocks 50 percent.Dr. Buzdar said, "These drugs work totally by different mechanisms. Tamoxifen does not change the estrogen level in the patient. What it does is not let estrogen into the cancer cells. Whereas this drug Arimidex, it lowers the estrogen production by 98 percent in the blood so there is very little estrogen for the cancer cells to grow."

this Aman Buzdar person is the one whose brain I need to pick. he's at MD Anderson and has spoken about the theory that "female hormones" in subsequent pregnancies may protect against recurrence. problem is, I don't know what that means. his study is here; the abstract doesn't mention protective effect, but this is the right article and full text is available for US $25. I suppose my dr can get it from somewhere.

the big question of the day is whether it really is a good idea to become properly menopausal. it's occurred to me that it's one thing for it to be safe to be pregnant - another to be having a supported pregnancy. my IVF dr did say they use very low levels of oestrogen. but I'm still not sure. I emailed her and she wants to see me, which is probably the correct way to go. I also plan to ask my oncologist about this on Thursday. he will get so bored with me and my questions. but seeing as there is an option to try to protect my ovaries during chemo, I'd rather find out now than later.

there is also the question of the side fx of the drugs I'd have to use for the temporary menopause if I did hold on to my ovaries. plus what to do after another baby - wait? take them out? don't like that last option.

I just wish there was someone who really knew the answers to all this. but there just isn't.

Sunday, January 02, 2005

that "good stuff" link below is 12 pages of links to studies about pregnancy and breast cancer. like this one, again saying that subsequent pg isn't bad. various studies say different things about bc diagnosed during or just after pg.

all of them, however, say 3+ nodes and a tumor over 3.5 cm is Bad. ho hum. not listening. fingers in ears. I CAN'T HEAR YOU!

a bibliography of research for 10 or so years on cancer in younger women.

another on reduced risk. is .54 particularly good?

good stuff:

a few leads: Mueller BA, Simon MS, Deapen D, Kamineni A, Malone KE, and Daling JR. From Fred Hutchinson Cancer Research Center and University of Washington (Mueller, Kamineni, Malone and Daling) , Karmonos Cancer Institute (Simon) and Keck School of Medicine at USC (Deapen). "Childbearing and Survival after Breast Carcinoma in Young Women"
Cancer. 2003 September 15;98(6):1131-1140.

and someone called richard theriualt, who has worked in this area.

obsessed? moi?

to read. baby approaching

links to find: and

referrals reality check: this Yahoo search: "can baby be born healthy if mom has chemotherapy?"

sister, my heart goes out to you.

little time to blog lately - dh has been around the house and I've been using the time that frees up to unpack boxes from Hong Kong and to get some serious writing done, plus of course spending time with him. plus this blog is supposedly secret so I have to stay off it when he's around, not that he seems interested in what I'm writing.

I suppose I should be more grateful for those eight embies. without them, if we'd conceived naturally earlier, I might have discovered the cancer halfway through a second pregnancy. and then what would we have done? or we could have had none frozen, and now no prospect at all of another baby. but they are so tantalizing, so clearly unusable unless I find a way to use a surrogate or convince myself that it's safe to be pregnant with a hormone-munching cancer lurking in the wings. sent off my law reform commission submission today...

silly things people say: a MIL of a mothers' group friend commented the other day "who does he (A) look like? he looks nothing like either of you". I could have said "he's adopted" or "no, we used donor gametes". that would have shut her up.

and not so silly, though potentially equally or more hurtful if said to the wrong woman: I was in my favourite discount shop last week and a woman asked me "do you have girls?". at first I thought she meant girls' clothes and I explained I didn't work there. then I realised she meant girl children (she had two). the thing is, I was baby-free at the time. it kind of pleased me that I must look like a mum (haggard, that is!!). but imagine if I hadn't won the baby lottery?

hair report: falling like autumn leaves. if I tried, I think I could pull it all out now. going to try for a hairdresser tomorrow to get it cut short as possible, if only to minimise the mess on my bedroom floor.

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