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February 2004

January 2004

Top 10 Cities to Avoid with a Translocation

I like my OB. He is kind and a little doughy and he sighs a lot as we talk about my Troubles. At Monday's appointment he asked how I was doing and I told him I was still spotting, a little, but nothing alarming. He then stared at my chart until I got uncomfortable with the lengthening silence and told him I didn't want to do this anymore. Miscarry, I meant. He agreed and then fooled around with his pen. Silence apparently drives me mad, so I plunged into all of my theories: test the sperm, centrifuge the sperm, drive my eggs out by twos and threes, the works. He agreed that someone is most likely doing something somewhere that could help us, and apologized that it was not he. He said that REs are all about IVF right now and that what I needed was a university setting, someplace research focussed. Minneapolis, he confessed, was not the place to be. I told him that we have some resources at our disposal and that I have no problem going to the Seychelles Islands (actually, seriously, I would love to go to the Seychelles- their major export is cinnamon and their major import is beer) if it can preempt another miscarriage or three. We put together the following plan: he is going to call the local RE and the ditto urologist for whom he has the most respect and ask them who and what they would recommend. If he hasn't called me in a week I am supposed to call him, which will no doubt be the case.

Let's talk about what an ass Steve is being about this. On Saturday I discovered that an infertility clinic in DC is offering a Shared Risk program for IVF with PGD. For $24,000 you get four cycles and if you do not have a baby at the end of it they will return your money. I thought this sounded pretty good, so I fluttered down into the basement where Steve is putting in ductwork and asked, "Would you pay $24,000 for another baby?"

"No," Steve responded.

NO?

"No, we can have another child for free."

OK, so I didn't respond properly. Perhaps I should have said something like, "I see I have caught you off-guard, moon of my delight, why don't we discuss this further over dinner tonight? Love you, baby." What I actually said was, "How dare you, you selfish motherfucker!" I went on, over the course of many hours during which I couldn't quite decide if I wasn't speaking to him or I should continue to violently berate him and therefore did both at intervals, to point out that I wasn't entirely sure it was any of his business. I mean, I think seven tries at doing things his way with only marginal success are plenty, don't you? I don't know that I am ready to go the IVF route personally but I hardly think that he is the person to issue the veto. And it's not the fact that he carries the translocation, if that is what you are thinking. That is a non-issue and it could just as easily be me. What burns me is that he is the one insisting on his own biological child. He's adopted and I think that plays heavily into things, but Christ! Cut me some slack here. Not only does he want a child AND its genes have to be part of a matched set AND I am the one doing all the heavy work BUT he thinks in-vitro is too much effort, expense, etc? Bite me.

You'll be happy to know that we eventually made up and everything is kisses and chocolate again. We agreed that the next thing to do is to figure out just how much of his sperm is lethal and work from there. We also agreed that he behaved poorly in the first place.

Although in theory Dr. Doughboy is researching this for me, I spent Tuesday calling every place in the Twin Cities that I could think of who might do genetic analyses of sperm. Silly me, I was originally trying to find a lab that would work with our insurance. Then I was just trying to find a lab that did this at all. Struck out with all four possibilities here. Struck out at in Rochester. Struck out in Chicago. Finally swapped emails with a guy in Maryland and he cheerfully agreed to test that sample, via FedEx for $1500. At this point I had actually chewed a small hole in the corner of the phone (I think during my conversation with Minnesota in which the woman kept saying "You are talking about PGD" and I kept saying "No, I am not. I am talking about a genetic analysis to determine the proportion of abnormal gametes per ejaculate") and decided to call it a day.

Today's project is to find a primary care provider for Steve whose expression on the clinic Bio page is either so sharp or so vacuous that they will understand the need for ordering this test (thus enabling my insurance company to pick up their share) or, failing understanding, will agreeably put their 'X' or smiley face where appropriate.

And I am sorry for blowing the whole Steve Is Good myth wide-open, but the truth must out. Steve Is Annoying.


Standard post-miscarriage freak-out

I am contemplating what we should do. Procreatively, I mean. Round about now, when the miscarriage spotting has slowed to a mere panty-ruining surprise and the memory of morning sickness (if any) has faded to a blur of unpleasantness, I start to reconsider our options.

Steve, as I have said, is a mutant. When those first few cells in his body got together there was some confusion, a misstep, a pardon-me-no-no-pardon-ME, and somehow part of his fourth chromosome wound up stuck to the bottom of the first chromosome, and vice versa. This is generally a de novo, or spontaneous, event. It just happens. PERSONALLY, I think that Steve's little de novo event might have been helped along by the fact that his birthmother conceived him while hookahing her way through Marrakech during the Summer of Love, but no use pointing tobacco-stained fingers and godforbid that someone should ever examine my own summers (say, 1986 through 1996.) Where was I? Ah, seeking a balanced translocation metaphor. So we all have pairs of chromosomes and Steve has one normal chromosome in each of sets one and four. The other one is like a pretzel rod dipped in chocolate, and a chocolate rod dipped in pretzel batter. Confused? Allow me:

[image deleted]

Did that help? Ok, imagine four sticks: two blue and two red. You snap off part of one red stick and one blue stick and then glue the snapped off pieces on to the stick of the other color. You now have four sticks: one blue, one red, and two blue-red. This is Steve. When the body goes to produce sperm it rummages around and pulls out two of these four. One all red and one all blue? Cool. This is Patrick and me and probably you, genetically normal. Two blue-red? Also cool. This is balanced and all of the necessary genes are around, just some of them are in a weird place. One red and one blue-red, or one blue and one blue-red? Not cool at all because you have too much red and not enough blue (or, again, vice versa.) That's an unbalanced translocation and, in our case with the specific chromosomes and genes involved, they don't live.

In theory, and what our genetics counselor told us, is that we have a 50% chance of getting the first two scenarios and a 50% chance of getting the last two. Two things she did not mention though. One is that balanced translocatees tend to produce an abnormally high number of aneuploid embryos. Aneuploid is a way to describe the wrong number of chromosomes in a cell. A monosomy is just one of a given chromosome and these are generally so fucked up they don't get very far at all. I don't think a person has ever been born with a monosomy but I could be mistaken, you know, being an English major and all. Still, let's just put monosomies under the heading of Really Fatal. Trisomies are what people usually think of when genetic problems are bandied about and they look smugly at Dakotah and Mackenzie and say that they would never, under any circumstances... whatever. Down's Syndrome is a trisomy 21, where the person has three copies of the 21st chromosome instead of two. So they have all of the required genetic information, but there is extra. How a person develops with this extra information varies drastically, therefore the wide range of capabilities a person can possess with Down's. The next most common trisomy is Trisomy 18. This frequently ends in miscarriage and 90% of the time a child born with a Trisomy 18 will die before they turn one. Depending upon your point of view, these are the good trisomies. They occur so frequently because a fetus can often survive gestation with them. When people say that miscarriages in the first trimester are most often genetic, they mean that the embryo carried some aneuploidy that was incompatible with life.

I digressed so far that I needed to start a new paragraph even though I had failed to complete my thought. So, balanced translocatees produce unusually high numbers of aneuploidies with their affected chromosomes. Steve might be churning out sperm cells with only one chromosome four, or three. That means that there aren't four possible combinations but fourteen. These all don't occur with equal frequency though, so I have no idea what our actual odds are. We could have Steve's sperm tested to see what percentage are balanced/normal and what percentage are knife-wielding single-celled sickos, and I think I would like to. If Steve is consistently sending forth army after army of the undead then I would be much more inclined to start looking in the higher-rent reproductive neighborhoods.

Which brings me to our options. Our first option is to do what we have always done: have sex more or less every day until a pregnancy occurs. This is cheap. It is easy. It is quite convenient. And, once, it resulted in a take-home baby. Oh! Oh wait! Our REAL first option is to give up. Stop trying. Let it go, as I was recently told by somebody whose ability to relate to our situation is nil. That is actually an easy one to reject at once, since the thought of another miscarriage brings only a premonition of anesthetized gloom whereas the idea of never having another child gives me an overwhelming sense of all-consuming shrieking black despair. So, thank you for the suggestion, but I don't think I am ready to give up yet.

Our second option is IVF with PGD. Take the eggs, add the sperm, grow the embryos, test 'em, then put in the normal/balanced ones. I keep putting this option in the Maybe Next Time column.

Why? I don’t know. The same reason I went to a casino twice in my life and am now prohibited by my husband from ever entering one again. I have unreasonable optimism in the face of statistical probability. Although do Infertility Clinics have waiters named Jonathan that bring you free vodka tonics every time they walk by? I don’t care how much they water down that vodka- you drink enough of them and you’d be doubling down on 6 too. Just as I start to worry about whether IVF would even work for us (would we even have any genetically normal embryos to transfer?) I find I am being bent sideways by the unmistakable pain of ovulation and find myself thinking Oh what the hell, hit me (carrying forward the whole casino metaphor, you see.)

I am not even sure if the third option is an option at all, but I just got a really interesting post from my cyberpal and fellow genetics martyr, Julie. She mulled over the possibility that we could use sperm washing techniques to increase our chances of isolating the healthy ones. They can use a centrifuge on sperm and roughly separate them into male and female carriers (the X chromosome being heavier than the Y chromosome.) In theory we should be able to spin Steve’s sperm and the monosomies and unbalanced arrangements would float up, the trisomies would sink down, and the middle band should be a grouping of balanced and normal sperm. The fact that neither of us can find anyone who has actually done this aside, I feel like it might be worth pursuing. We could couple that with injectibles, maybe, and increase our chances all around. This is EasyBake Oven science, just so you know. I have no clue if any of this is practical in our case or any case, it just seems sort of logical.

I am seeing my OB on Monday. My inclination is to move on to a Reproductive Endocrinologist at this point to see if we have missed anything. A fellow blogger kindly gave me a warning on the risks of post D&C uterine scarring, for which I am grateful, and I want to ask if there is sufficient cause to investigate that possibility as well.

In short, I might sit here like a miscarrying fool for five years, but just watch me spring into action now. Hot-cha!


My toes are cold

I got Steve a weather station for Christmas, or maybe it was his birthday. It has a little device that lurks outside somewhere and then a paperback-sized monitor that sits on his desk and tells him what the atomic clock says, what the temperature is and what the barometric pressure is doing. It is also full of trivia about sunrise and moon stages. None of these snippets are of the slightest practical use to Steve in his daily tasks, but he likes to know. So much so that he returned the one I bought because it could only record outdoor temperatures to -4 (that's -20 Celsius.) He woke me up this morning by dropping the baby on me and saying that if he hadn't returned my present we might think it was actually -4 out this morning when in REALITY it was -13.5. Being mostly asleep and three-quarters suffocated by Patrick I didn't ask, but outside of mathematics what is the difference between -4 and -13.5? Were Patrick and I going to cancel our picnic for one but not the other? Oh, and he also said that someone (let's assume it was a cat) had thrown up on the stairs. Yesterday he woke me up by announcing that one of the cats had miraculously managed to find a mouse in this hermetically-sealed tomb of a new house and the dearly departed was just to the left on my side of the bed. I asked if it was my job to deal with everything gross around here and he retorted no, and I was lucky because if it was my job I would have been fired. Therefore, I handed in my resignation for the 537th time and yet again I have been asked to stay on until I can train a replacement. Fuck.

Housewifery blows, in case you were wondering. I'm thinking of becoming a Totally! Nude! XXX! Dancer! As an insomniac I think the hours would work for me, and I would get to meet a lot of interesting people. Just a thought.

Patrick is cutting his last canine, saints be praised. Although he can smack his head with aplomb, gum pain drives him to distraction. He moans. He weeps. He gnaws on his fingers. He guzzles Baby Tylenol and still wakes me up once or twice to complain about things.On the other hand, having someone sort of grizzle at you ceaselessly for days on end is annoying. We'll all be glad when this is over.

I think my post-D&C spotting IS over, huzzah. Two weeks today, tick tick tick. To celebrate I slipped into my sexiest turtleneck and whispered to Steve in a deep dark voice, "I can give you five minutes, but then I have to get the laundry started."


And how was your day?

My morning looked like this cranky.jpg Do you know how insulting it is to have someone point at your mouth and shout "Off!" fifty times a day? Very.

Toddler thuggery aside, I am, for no apparent reason, feeling much better. Now, if only I could stop leaking from the nether regions like I have a transmission problem I might graduate from "feeling better" to positively chirpy. I don't mean to set myself up as the Internet's foremost authority on miscarriages or anything, but if you are planning on one yourself go ahead and pencil in a full two weeks of bleeding and spotting. I don't care what your doctor said.

On a related note, Steve keeps moaning that he has NEEDS in a rising crescendo like I never thought it would happen to me but- but bleh, says I. What I actually said, as opposed to what I thought which is Sex sounds repellent, is what the nurse said to me: "Nothing vaginal until you see your OB." I conscientiously repeated this to Steve who got the most disturbing gleam in his eye and said, "Not a problem." I have been keeping my distance ever since.

I also have NEEDS and spent last week ordering shoes, bedside tables, a new quilt and a case of wine off the internet in rapid succession. I'm not usually one for the soothing but temporary effects of durable goods consumption but when Fazer mints fail me I start to panic. The shoes had to be sent back, the bedside tables are backordered until March, the quilt has velvet patches that have already sucked up every cat hair in a 600 foot radius... but the wine is good. Wine is always good.

Now to avoid Finkfaces, senior and junior, until the one has cooled off and the other has learned to love again.




Alphabet Boy

I am by no means confident that this has worked, but in theory I have just attached a video of Patrick electrifying the nation with the letters M, N and Q.

Our guests left this morning after a four-day visit and I have the pleasant sense of release that accompanies the departure of any house guest. I like them and they put their bed linen in the laundry room before they left- but guests are work. You can't just rummage around the cupboards and then ask if Cheerios and shiraz sound good to everybody or would they prefer to make their own dinner? This isn't the Greenbrier but we have our standards.

Steve doesn't understand this concept. If he had his druthers we would have a shuttlebus running back and forth from the airport, loaded with our nearest and dearest and that couple we met in Santiago. He envisions me constantly clasping an earring on while the doorbell rings and a pork roast sizzles in the oven- how delightful- as he beams like Mr. Rourke. Welcome! Welcome! Tattoo, of course, would understand what a pain in the ass it is to carry all those drinks and luggage with small hands. We don't fight about it. Steve just wears me down with repetition: "When are we having the Truly Borings over?" or "Why don't we see if The Guy Who Told Us How Much Money He Makes and his wife want to come out for dinner on Friday-Saturday-next Friday?" So his guests finally came and he was happy and now they are finally gone and I am happy. A marital success story.

The talk-to-me function here has some limitations, but we should try it anyway. There's a comment link to click somewhere down yonder. Let me know if the video works and that you were here and whether you'll ever come back again so I can get a sense of just how much of a waste of money this is. Pushing it into a pile and burning it waste, or lipstick shade I like but makes me look yellow waste?

Julia


Trying a canter

This is my pinkie toe into the waters of unchaperoned online journals. I have been keeping a log, a journal, a diary for almost two years on one of those cozy parenting sites that celebrate virtual community, mothers with glee helping mother-to-be, that sort of thing. I confess that I was initially creeped out by the suffocating supportivness of it all- the B-I-G cyberhugs and the euphemistic use of initials for even more euphemistically referenced acts of untoward procreation ("BD" indicating "Baby Dancing" which, of course, refers to pervid screwing, or "trying" as eager couples like to confess over the Thanksgiving carcass.) Never having been one of the girls, it took me a while to warm up to the rest of the sorority. Still, I rapidly grew addicted (I use the term advisedly) to churning out reality Internet for the minnies and I have thus far produced tens of thousands of words, mostly about me. My growing narcissism is no longer content with the confines of a Good Housekeeping-esque surrounding, not to mention my inability to post video. And, just between you and me, Pliny the Elder (or was it the Younger? Those two!) and I were nattering on the other day and we are pretty sure Vesuvius just rumbled. I would hate to wake up one morning and discover that my journal had disappeared on the last day of iparenting.

I am Julia, by the way. I wrote a bio under About Me somewhere around here, and was surprised to discover that my tale of miscarrying woe can now almost fit on a matchbook. The first dozen times I told our story it ran to paragraphs and involved a lot of words like "grief" and "devastating." I find the fact that I have reduced the whole thing almost to the point of haiku rather amusing. I am either completely at peace with the fact that I have had six fucking miscarriages, or I am suffering from some sort of detachment psychosis. I have a husband, Steve, who is gorgeous and funny and makes my life sing and who carries a chromosomal rearrangement known as a balanced translocation of chromosomes one and four. Back when we first discovered this interesting peculiarity we were told that we had a 50% chance of a normal/carrier baby and a 50% chance of an unbalanced baby who would either miscarry or die instantly after birth. Seven pregnancies and one child later I have to say that someone was mistaken or we have the worst damned luck on the planet. However, we do have a son, Patrick, who is eighteen months old and is quite literally the center of our existence. We are both home with him all day and he will no doubt have to spend an extra three years in therapy as a result.

I had a D&C a week ago Thursday after it became apparent that I probably was not going to miscarry on my own any time soon, fetal demise having taken place about two weeks earlier. This most recent pregnancy was questionable from the start, as my hcg levels did not double properly and the embryo was measuring a week too small. Still, it hung in there and we managed to see appropriate growth and a really strong heartbeat before everything went to hell again and the heart stopped beating. So, after about a week I am finally (almost) finished with the physical unpleasantness. I discovered that I am sad, however, as I keep eating things in hopes of getting that jolt of pleasure that comes with Fazer cream mints or french onion dip. See: “detachment” above if you are wondering why I only realize that I am sad when chocolate fails to fix what ails me.

My next mission is to try to post a video of Patrick saying the letter Q.