Sunday, August 29, 2010

wisdom and prayers - please

I tend to have my rage episodes at Tep.eyac after business hours, when I realize that I can't contact them (some celestial powers must have noticed one of their major oversights recently, though, because now, you can leave a message when they are not there - a revolutionary use of answering-machine technology), and I start to think about just why I'm so angry. It's like this: my cysts are getting worse. I'm having so much difficulty following up on a question (a simple question, actually - I just wanted a prescription, but I was willing to discuss the medical theory to persuade Dr. L/C to write it) I asked IN JUNE that I have not mentioned this to my doctor. They hurt more and more of the time now. And I need to do something about them, but trying to contact my doctor in order to do this is a waste of time.

So at my upcoming appointment, I have to make a decision between discussing the underlying problem (which will undermine any course of treatment I decide on anyway) of Tep.eyac's complete and inexcusable failure to communicate, or requesting the medicine that I need to give another shot at TTC (since, cysts aside, my cycles are suddenly looking so much better - I think I just need more progesterone in my luteal phase, and I would get more b/w to confirm this, but we know that Tep.eyac no longer provides me with b/w results) when my DH is next home, and then move to depo, which I think I should try for a few months to see if the cysts will recede, and then maybe HCG, which I will have to persuade Dr. L/C that she really could prescribe to me.

But keep in mind all these ideas require persuading her over some time (and she ignores my calls and emails); getting diagnostic tests to confirm that I have cysts and that the progesterone is helping and (later) whether the depo is working (and she withholds testing results from me); and if, God forbid, I should get pregnant, prescribing hormone support to maintain the pregnancy (see above about ignoring calls and emails). I think if I got a BFP at this point, I would go straight to the emergency room and threaten to shoot up the place unless they gave me a lifetime supply of every form of progesterone supplementation. I consider my RE to be an active threat to my health, to say nothing of that of a future child.

I note that my silver-bullet treatment option, a hysterectomy, carries with it some serious consequences beyond the obvious. Among these are that hysterectomy means hormone replacement. Which means, I believe, an increased risk of breast cancer. Which already runs in my family. How young do I want to die to avoid the endo pain and the continued destruction of my digestive system by the adhesions? Why am I faced with this decision instead of what I could do to treat the endo and maybe get pregnant?

So why don't I quit complaining and just get another doctor already? Well, you tell me how long you think it would take me to persuade a good doctor that my cysts have returned; now is not a good time for a third surgery, no matter how much better the new doctor thinks he is with endo than my last surgeon; the best treatment option barring surgery is depo provera, because I have taken lupron and am unwilling to do so again; I will not take clomid thereafter; and what I need after the depo works (if the depo works) is HCG injections. What do you suppose? Six months? Twelve? Possibly, I would never persuade anyone of this? Yeah, that's about what I thought. If I thought I could avoid getting caught, I would buy my own drugs bootleg. I think I'm better off just guessing what I should take, when, and how much (with the help of the trusty Dr. Google!) and dealing with the consequences than trusting any member of the medical profession.

So yeah, now I have to decide whether my next (and perhaps last) appointment is the time I should try to get the medicine I need, or find out why my doctor is not speaking to me.

So on Friday night, when I thought about how wrong all this was, that I should be in this position in addition to all the other crap infertility implies, I thought carefully about it and lost it in a focused way.

Just before 4PM (when Tep.eyac closes on Fridays!) I had left a message on the nurses' line pointing out that, since Tuesday when they were faxed a second copy of the results, they still had not called with the results of the thyroid testing I did five weeks previously - or with a message noting their failure to call, apologizing, and explaining. I'll tell the truth: the lack of these messages is what has been really poisoning the well for me. Once in a while, I cannot meet a deadline or schedule I promised a client. There's only one thing to do in that situation: you call or email and apologize. You tell them you haven't forgotten them. You say that you know their project is important and that you are working as fast as you can, but that for good reasons, you can't finish as soon as you had hoped and you will be in touch as soon as you are done. And you know what? That basically never fails. They're not mean people or deadline-obsessed; they just want to know that you give a da*&. And I would wait twice as long with Tep.eyac if there were any evidence that they thought that my treatment was their problem.

So the one I left just before 4 was not a nice message. At all. And I realized - oh, most of my messages are not nice messages! I'll be almost (not quite) polite on the phone live, but my messages are really, really angry. I start off by pointing out what I'm calling about and why it's important to me. Then I tell them how long they have not responded and when would have been an appropriate time to respond. Then I note that I know I'm angry. Then I tell them why - this is my health, and why don't they care? I manage to do all of this fairly succinctly. But I have been doing it for months.

I guess, in a way, it's no surprise that they don't talk to me. Except that actually there are two surprises. One, it's my doctor, not the nurses on whose voicemail I rant, who won't speak to me. And two, wouldn't you think they would drop me as a patient - and clean up their collective act? So far as I can see, they have done neither (possibly the former, definitely not the latter).

Maybe I'm the stapler guy in Office Space - they figure that if they treat me poorly enough, I'll just leave. Except for one thing. I didn't start out mean - I started complaining when they were already being irresponsible. And continued complaining when they continued to be irresponsible.

I have raved at the quality of care I have received from, among other places, Virginia Hospital Center and Washington Radiology Associates. I would have more blood drawn and more diagnostics done just so I could work with these people more. They are wonderful. So I am not incapable of recognizing good treatment. I'm just not seeing much of it at Tep.eyac.

Anyway, so how did I lose my cool late Friday evening? Well, I left another message on the nurses' line. I left my identifying information and asked Dr. Bruchalski, who heads Tep.eyac (but is not my treating physician), to call me as soon as he was able on Monday morning, noting that it was not a medical emergency but nevertheless very important to me.

I have a very bad temper that I can fairly attribute in substantial majority to infertility. Obviously the people who (fail to) treat me for infertility spontaneously draw more of my ire than an average provocation would. But I'm not sure that's unfair - if they don't know how hard it is to go through infertility, then they certainly ought to educate themselves, stat. And they make it harder because they are irresponsible with our care. (I know it's not just mine. Thank you, IF blogging...)

Anyway, left to my own devices, I can be very hostile. Confronted with a live person (or a live voice), I am more moderate. There are (usually) two sides to every story. I can't even imagine a good explanation in this case, but that doesn't mean there isn't a bad one. And if someone offered it to me, I would listen. I don't want to go off in a towering rage and be made a fool of when there's a good or even acceptable explanation. So I realized that the right thing for me to do was make sure I could talk to a person. I realize this with my husband - if he suggests something insane over email, and I call, I can gauge just how attached he is to this particular breed of insanity, and respond accordingly. If I respond over email, I go nuts pointing out the insanity in the insanity. I might have to, to head him off from some form of insanity. It's happened before; how do I know? A lot of fights start this way.

So I think I did the right thing (and I really want to have this discussion before my appointment, because my insurance does not cover diagnostic visits so I can discuss communication issues; I am supposed to use these opportunities to obtain medical treatment, and that is what I would like to do), but that means that the confrontation is coming up. I know I'm not the only person who's been at this crossroads (if not this one exactly). In some ways, I feel I'm striking a blow for every ignored, disrespected, and inadequately cared-for infertility patient. But at the same time, I just want some medicine so I don't get any sicker, and I don't know why it has to be this hard.

I would appreciate any suggestions anyone has, and, also, your prayers, that I don't misbehave too awfully, and that I keep an ear out for what I should really be saying.

Also, because I feel this needs to be said: I've noticed increasingly over time that there's not a lot of room for "overeducated" women in Catholic circles, whether that's blogging or elsewhere. I've seen one too many semi-secretive eyebrows raised IRL because of where one of my college friends is getting his graduate degree, or some "big word" that I used. I don't try to be a snot about any of those things, but I also don't lie or keep secrets about things that everyone else readily discusses with respect to themselves. I will not apologize for my education, such as it is, and shame on anyone (any woman, I should say - because that's what this is really about) whose mind that thought has crossed.

So I'll be clear: pride may be one of my failings, and I may be angry because I fail to take suffering with the proper humility, but I don't get angry with people on a socioeconomic basis (i.e., because they're "just nurses"), and when I've talked to the Tep.eyac nurses I've made 100% clear that I'm not angry with them and all I want is for them to pass the message along to their bosses, with whom I really am angry, and with good reason.

Wednesday, August 25, 2010

what he said

As a general rule, the God of the Old Testament is of limited help to infertiles. Or anyone really suffering, for that matter. [Nota bene: this line of thought assumes some sort of familiarity on the part of the reader with the idea that there's a "God of the Old Testament" but also always the same God. Some may not follow this line of thought; if not and you're curious, drop me an email, and I'll find an explanation from someone with better theological training than I have.]

Right? I mean, the God of the New Testament is all "take up your cross and follow Me" and "what profiteth it a man to gain the whole world and lose his soul" and "greater love hath no man than this, that he lay down his life for his friends" and "Father, forgive them, for they know not what they do" and "let the dead bury their dead" and "foxes have dens and birds of the sky have nests, but the Son of Man has nowhere to lay his head" and "enter through the narrow gate" and that sort of thing. Not necessarily expecting a lot of blessings out of the earthly life, and seeing a good degree of theological value in waiting for your blessings until the next world, thankyouverymuch.

The Old Testament? Not so much. The Old Testament is all "your descendants will be as numerous as the stars" and "your wife will be like a fruitful vine inside your home; your children will be like young olive trees around your table" and "my lover is like a gazelle or a young stag" and "Thou preparest a table for me in the sight of my enemies; Thou anointest my head with oil; my cup runneth over" and "so King Solomon became greater than all the kings of the earth in riches and in wisdom." Blessings mean material blessings. If God loves you, you get stuff - and lots of it. Including babies, by the way.

(Yes, yes, I know, this is a simplification. There's lots of Exile-related wailing in the OT, and some getting things back sixty- and a hundred-fold in the NT. If you can nitpick that well, I know you get my point.)

And yet the other day I was doing my little bit of Scripture reading, and I saw this:
On that day, says the Lord, I will gather the lame,
And I will assemble the outcasts [misfits!],
And those whom I have afflicted.
I will make of the lame a remnant,
and of those driven far off a strong nation;
And the Lord shall be king over them on Mount Zion,
from now on forever.
Micah 4:6-7 (emphasis mine). And then there was this:
Therefore the Lord will give them up, until the time when she who is to give birth has borne;
And the rest of his brethren shall return to the children of Israel.
Micah 5:2. In other words, God is going to inflict misery on people He likes - the exact people, and the only people, whom He plans to save. OT lamentations offered in Israel's own voice during the Exile era make clear that Israel was exiled, and her people suffered, because they were unfaithful and had to be punished for their sins so that they would repent and return to God. And perhaps that's what's meant here, but it's not what's said. God is just saying that for a time He's going to make certain people miserable, but then, in the end, they're going to be the chosen ones.

(I know you know where I'm going with this. Almost, but not quite. Give me a second.)

The funny thing is, those words - stuck in the middle of a lot of other symbolism about the nasty things that were happening to people in the Holy Land at the time - leapt out at me because they are totally consistent with my idea of what God does - from childhood on, no less. We belong to Him, and He gets to decide who suffers. Just because He wants to. And it doesn't mean any special sort of divine hostility - as demonstrated by the fact that the specially suffering are also going to be the specially saved. A bit like St. Therese suggesting that she was God's toy, his little ball, and He could cast the toy away if He liked. (I'm not claiming I have her good attitude about it.)

Maybe my notions in this regard stemmed from the story of Lazarus, which I distinctly remember studying in second grade. It made a big impression on me. You know - Lazarus, the poor man, starves and ails outside the rich man's door while the rich man feasts. Eventually Lazarus starves to death, and then the rich man dies too; Lazarus goes to heaven, but the rich man doesn't. It's obvious why the rich man is punished - letting someone starve to death is bad behavior. But what exactly did Lazarus do that established that he was worthy of eternal life - starve?

I remember believing, and I think being told at the time, that it made good solid sense. Maybe just because God loves the suffering - more than He loves those who aren't.

I can't claim that this perhaps deep-seated view on my part has brought me to some sort of philosophical approach to infertility. Quite the contrary - I was and am very angry with God. (I've told Him so now, too. No miracles have resulted yet that I have noticed.) But I will say this. Without being able to articulate it very well, I have thought for a long time that God chose the people He chose to allow to be infertile for a reason.

Perhaps this totally undermines the humility I'm supposed to derive from this experience, but I honestly think that most of the people I know who haven't been called to carry this cross, couldn't have carried it. I'm not saying I've carried it well. I haven't given up my faith - but I've had a bad enough attitude that I'm not sure that's saying much. But I'm not dead yet. And I think there are probably a lot of women blissfully and rather shallowly dandling babies who would have been absolutely, 100% used up and destroyed if they had had to come face to face with a life in which they didn't have them.

I can't prove this, of course. By definition I can't. And it may be only a product of my own delusion or arrogance that I think so. For one thing, suggesting that I was chosen to suffer this way because I can take it implies that my survival is attributable to my good qualities and not God's grace, which puts me on pretty shaky footing to start with. And of course Protestants say that "God doesn't call the equipped, He equips the called," and while I'm not Protestant and don't have to sign onto this point of view, I sort of see their point. Moses had a stutter, or whatever.

But still. I think God also does some calling of the equipped. There are definitely people - in history, among our own acquaintance - whose substantial natural gifts were clearly handed out in anticipation of them having an opportunity to serve in an important way. And I can't help feeling a certain degree of conviction that God is going to get a little more mileage out of a gal who is giving Him a piece of her mind while going through misery than someone with a fine attitude who has only ever been asked to contend with sunny days. I know I would if I were Him.

Maybe that's part of the reason I'm not entirely sure I want a baby. I don't so much want the problem fixed - I want the problem fixed. I'm not sure either of those things is going to happen...

Tuesday, August 24, 2010

misfit rampages

I'm not at a time in my cycle during which I should have any major hormonal issues (CD7, according to fertilityfriend - though it refuses to count three days of spotting before). I'm not on any rotten IF drugs. And nothing terribly rotten has happened to me lately (unless I am way more broken up about my coworker's delivery unconsciously than I am consciously - which I doubt). The fact that I have gotten way too little sleep the last few nights (because I've been staying up super-late reading) is probably contributing, but I'm not sure it explains all of it.

This morning, I went on a rampage. I was way too busy yesterday to get all my phone calls in, so this morning before I even got on the bus, I put in a call to Tep.eyac. Apparently if you call before 8:30AM, someone (a sweet and now much-abused girl named, I think, Jen) might actually answer. I asked her (for either the third or the fourth time I called about this, about once a week) whether they had my thyroid results yet. She couldn't find them. I pointed out that they shouldn't be in process on anybody's desk, as they've had them for weeks.

She said she was sorry (and she really sounded sorry), but couldn't think of anyplace else to look. I told her that all I wanted her to do was pass along the message that their failure to respond (with repeated reminders) to these tests, and Dr. L/C's continuing failure to respond to my June 15 email (despite a follow-up email and four follow-up phone calls at various intervals) indicates to me that Tep.eyac does not care about my health, which I find concerning. She said that she would, and I hope she does. I'm not usually that confrontational (despite the strong tone I take when venting on my blog), but I don't think that was me being overly b!tchy. It's the truth. They obviously do not care, and somebody somewhere ought to be concerned about it. I cannot imagine getting away with treating my clients that way, and the projects I do for them involve their work, not their health.

So then I called the blood lab. They're rotten to talk to, but competent - the reverse of Tep.eyac, if you will. They had forwarded the results on July 21. That's right, JULY. Said they would fax them out again today. So I called Tep.eyac again and told them. And said that I expected a phone call with the results today. And that if I didn't get one, I was taking the extra bottle of pills I have and upping my OWN dose by 50% tomorrow regardless (I feel as though my thyroid is still low, and that seems like a conservative adjustment). I hope that makes some impression, and at a real medical facility, it would; but I am becoming convinced that these people are truly incompetent, and not merely occasionally forgetful.

If I could get my hands on a prescription pad, I would literally be a better doctor to myself than Dr. L/C is to me. (For anyone who is interested, that is my motivation for not switching yet - I want a couple more prescriptions. Then I'm out.) Blogging gives me more information on what my treatment options really are than a medical degree and access to research materials apparently give her. Despite my clearly halfhearted approach to infertility treatment and despite the fact that this is her area of expertise, I am much more thorough about following up on treatment options. All I need is scrips for bloodwork periodically, and medicines once in a while. I don't even need radiology, because I have a much more up-to-date idea of what's going on internally than she does (when she actually looks at my chart, which is never) - for example, I now have at least one cyst on each ovary, at least 2cm in diameter each. I know, because they're hurting today.

The rampage continued at work. I have a senior colleague who has been asked to "assist" me on a personnel matter. That means (per our practice) that he is supposed to review pleadings and submissions that I draft to see whether I missed anything or whether things could be said better, and answer my questions about how the process works, and make strategy suggestions. I'm a newbie, so I can use the expertise of someone seasoned in this area to catch the things I miss, though I can certainly get the main things myself.

Instead, he has been - aggressively - trying to do my job for me. I told him no fewer than ten times that I was writing my own brief, despite his repeated comments that I was "wasting my time" on it when I could be doing something else, and that I should just send him my half-done draft and he would finish it. The offer is generous, perhaps, but the first offer is inappropriate (it's my case, and I would never imply that I should do a colleague's work for him unless asked), the second is way across the line, and all subsequent offers are harassment. He seriously made ten; a new one every time we discussed it, which was, contrary to my preference, constantly. And then, when it came time for the second pleading - he started the same thing again. And now it's the third. Although by constant insistence I can get him to let me do my own work, I do mean constant - until the thing is actually filed, he will not stop suggesting that he do it, or finish it, or redo it, or pestering me about when it will be done so he can read it. I note that he has been excessively complimentary about the work I've done on it so far - way too nice, if anything.

My boss has told him that it is my work to do, but has not gone so far as telling him that he is harassing me and should stop. Today my colleague stopped into my office in my first free minute to start talking to me about how to do our next filing (I never want to work with him again, because he hounds me so that I never have a minute's peace in my own office and I feel constantly harassed), and to my own surprise, while I was thinking about something else and not meaning to be specially aggressive, I found myself laying down the law. I told him that trying to do my work for me was inappropriate and offensive, that I would never do that to a colleague, and that I did not ever want to hear him again suggest that he would write a pleading for me unless I specifically asked. When he said, "I didn't want to make you mad," I told him that me being angry was not the point, I wasn't the problem, and his behavior was not appropriate. He seemed a little sheepish, but I have now commenced acting as though everything is normal, and I think he will too.

The thing that really annoys me about the whole thing is that I had to be that aggressive, of course - I am always polite to my colleagues and I like all of them (with this exception) and hope they like me. It's not that he couldn't see that I wanted him to back off - he commented "oh, I can see you're in the middle of something" every time he waltzed into my office and started talking for ten (twenty, thirty) minutes about something he should just have put into a two-sentence email. All of the rest of us are sensitive about someone we've dropped in to chat with having an imminent deadline or even a busy day. And he can see the cues too (I know, because he says so), but he ignores them completely.

So I feel justified in all the things I've said - I've gotten into shouting tirades with people I've dealt with in the past (customer service on the phone, usually), and I haven't raised my voice yet today. In fact, I think these are things I should have said long ago. What I don't know is why I'm finally angry enough to take on everything - and why it is that I have to be so severe just to get people to behave decently.

Monday, August 23, 2010

bits of things

Today, my colleague went into labor (a week early, with her first - which is a good thing, as I understand it. I've been saying "as I understand it" a lot today). I was shocked to found that I was a bit excited to hear that the baby was coming. It's a huge change in her life, and she's been really exhausted and uncomfortable the last several weeks. (She even sent several of us an email from the hospital. Funny girl.)

Another colleague (not in my immediate office), who spearheaded the baby shower planning in which I participated, and who had her first about a year ago, sent an electronic invitation for us all to visit the hospital (very near the office) tomorrow at lunch. I thought carefully about whether I should go. I ultimately realized that dealing with several women going on about her labor was not going to work well, though I might be able to deal with her solo. But it's been a long time since I've visited a new mother in the hospital...before I was married, I think.

Anyway, I went into the other colleague's office to let her know why I hadn't responded. She'd been driving me a little nuts with the "if you have kids" stuff. So I said, "Here's the deal. I can't have kids. So I try to figure out what I can do graciously, as a mental health matter. I think dealing with several people at once might not work." And she said - "I'M SORRY." And asked me whether I had thought about adoption (not "you should just adopt"), and I said we were thinking about it, but weren't sure it was for us. And she didn't argue. And she asked whether there was any chance at all (I get told sometimes that I'm young so there is a chance, but I've never been asked that). I dropped a lot of information on her. I always say that only one thing is required: "I'm sorry." And that's what she said. God bless her.

The senile old bats who are selling (or not selling, as the case may be) the house I want to buy are still being ridiculous - or, perhaps, are becoming more ridiculous. Their ad has now been modified very slightly, to note that "sellers are firm on price." Yeah...they were firm about it for 18 months while it was on the market before, too, when it was likewise priced above market value. See how that worked out for them. I think I may be about to settle in for a long (or short) wait for them to die. Not how I intended to acquire real estate, but life is full of surprises.

I have not been specially good about my daily Scripture reading, but I've done a bit...the other night I was reading one of the minor prophets and the passage was about the Israelites' 40 years in the desert, wandering. They were and are repeatedly rebuked for having forgotten God's miracles (almost two generations ago by the end of their wandering) parting the Red Sea and saving them from the Egyptians. As they wandered, they despaired, and mistrusted God, sometimes setting up graven images as idols in His stead. I never thought too intently about that part of the Bible. But I'm thinking about it now. I identify with the Israelites. Setting up idols is just bad behavior - not acceptable. But mistrusting God? How long is it supposed to sustain you, the fact that God saved you dramatically before - maybe not even in your own lifetime? When He has left you homeless, defenseless, and purposeless in the desert for decades, possibly forever? It's not a matter of believing that God isn't God or isn't powerful or that He can't help you - your experience tells you that He could help you, but now can't be bothered. Obviously, I can identify with that...

I got a pile of library books on Saturday (and consequently have not really been sleeping at night since...need to get that under control). One of these was What to Expect When You're Experiencing Infertility. It's brilliant - brilliant. What I've been looking for in all my library sojourns - a book just about the psychological experience of being infertile and in treatment, not about how to seek treatment or how you probably will get pregnant (maybe - maybe not. So quit predicting my medical outcomes, authors). It starts with a chapter about the emotional experience of IF, broken out from the male and female perspectives. I'm going to have my husband read it, and then we're going to discuss it. I feel like it's a huge thing that's been missing - neither of us really understands the other's reactions, and we need to.

Still working on the position teaching law in the evenings. I have gotten approval from our ethics people (whew!). Now I need to finish processing my second writing sample - this won't even take an hour; I've already got my resume, first writing sample, and cover letter done. Might even have it in tomorrow. I have butterflies thinking about it. A new step...?

Also on the subject of scriptural reflections...tripped over something about home/houses/Jerusalem/something when reading recently and had a thought that something to do with houses is maybe not just my private obsession borne of my experiences and psychoses, but part of something I'm supposed to do with my life. Not in a way I've worked out yet, but I'm mulling it over, slowly, waiting for the thoughts to crystallize. (I could always come up with a way to fit it all together that sounds theologically sound, but I feel as though if I force that sort of theory, I'll lose sight of whatever as-yet-fainter message I'm supposed to be listening to. Maybe something is out there...)

Saw Father again Friday. It was good to talk to him; but nothing earth-shattering. I might have a few thoughts to share after I mull it over...in the meantime, I am wondering how to thank a good priest who has volunteered out of the goodness of his heart to be a spiritual director for an insane stranger. Donation to his favorite charity? Research what sort of item his parish could use? What would be appropriate?

Thursday, August 19, 2010

five years ago today

Mr. and Mrs. Misfit were married!


It's funny looking back. We were so young. We were so full of hope for so many things about which, now, we are not; time has made us cynical, not without cause. On the other hand, so many of the world's challenges seemed near impossible then, which now seem easy; and we faced many difficulties in our relationship and new marriage at which, now, we laugh.

Old married people told us, when we were engaged, that the love we felt as a young couple newly smitten with one another would change - but it would improve. It seemed damning with faint praise, and I wonder whether that isn't how they meant it. If they did, they were wrong. There are qualitative differences between initial infatuation and an enduring love; but each day we love each other more, and for all I've heard his jokes, and he knows my crazy family stories, and he may move out if I lick my fingers after eating Cheetos again, and I plot frequently to destroy his laptop so that he can't use it in bed - the same magic that first drew us to one another persists, alongside something more powerful than we knew then, and could never have expected.

Life is rarely what we expect of it, nor what we hope; and at the wise old age of twenty-eight, I am coming to understand what is signified by the "vale of tears." But amid our many trials come profound blessings, and for us, fortunate souls that we are, this vocation is one of them.

Monday, August 16, 2010

limbo

I finally put all of my charts since December on FF. The last 3-4 months have variations of the same pattern: 1-5 days of spotting before CD1. (Well, or you could say the first day IS CD1.) I did not formerly have this pattern. I noted carefully, BTW, that it's always light-red spotting - looks like cranberry juice on a tissue I guess - no brown at all.

It's funny how all the "academic" information that doesn't apply to my case falls right out of my head (whereas I remember random geography trivia from second grade). And then a vague memory resurfaces: low luteal-phase temps and early spotting (not brown) mean low progesterone, right? Not that I haven't always had wonky levels, but I didn't have those objective signs of low progesterone before (just the endo that always seems to cause it to be low). So now I need something to fix that, but I've heard such horror stories of progesterone side effects, and if I take one of those things that raises it on that rising-tide-lifts-all-ships basis, like clomid or tamoxifen or (maybe) femara, then one of the ships it will raise is - the cysts.

Can't win, don't try.

I do need to look into the supplements for my DH (thanks much to all of you, and especially TCIE for providing the hyperlink!), and I did schedule an appointment with Tepeyac (at which I will ask about depo, femara, and HCG. And this time, I will bring documentation). This sounds insane after all my complaints, but they will not call me back about the thyroid blood draw I did weeks ago (I have now called twice to ask about it - why do I even bother?), and they are the only people from whom I could get a prescription for the Erfa supplement (and a PRN prescription at that!).

So until I find out whether my dosage needs to be raised, and get any necessary prescription, I won't fire them (and as soon as I do, I will, and find another RE). This is pragmatic bordering on the exploitative, but what am I to do? I didn't tell the regular endocrinologist to ignore and ridicule me, and I didn't tell Tepeyac to refuse to answer my calls or read my emails or give a damn whether my ovaries have been invaded by aliens. I have to look out for myself, because it's abundantly clear that nobody else is. What a complete failure the medical community is. And I don't even want anything that isn't already prescribed regularly and sold commercially.

On other fronts...the insane old people selling the house I want continue to be insane and old, and come up with associated additional drama. Most recently: they have told their realtor that they're not sure whether they want to sell - to anybody. (Their latest listing, for reference, went up three weeks ago. And before that, the house spent 18 months on the market. Then off the market for 6 months before they just recently listed it again. So this is not a logical time for a sudden change of heart.)

It seems they can never make up their minds - though I imagine that an offer at their (outrageous*) asking price for all three parcels together, with no offer contingencies regarding the fact that a developer would need historic registry approval to knock down the existing house, would make up their minds straightaway. Frankly, I would be better off waiting for these loony (attemptedly) profiteering old people to die, and I am more than willing to do so.

In the interim, I will go through the house one more time (have been trying to schedule this for a week, but apparently they won't answer their realtor's calls, so no luck so far), photograph everything that's worth asking our friends questions about, and then make one offer: the exact number I think the house is worth. (I would have started with a lower offer, but they allegedly have several competing ones, so no back-and-forth bargaining opportunities will exist.) The listing broker has told me that it has to be a "good" offer - i.e., at least the asking price - but the same-age, also falling-down house across the street was sold with 35% more land last December, for $50k less than this house's list price. So he is LYING (or some sugar-coated version thereof), and he can take his fictional offer requirements and stuff them.

My opinion of the real estate profession is about the same as my opinion of the fertility medicine profession right now: i.e., even the good ones can't be trusted an inch farther than you can throw them.

In other news...my DH and I have had a delightful cycle of screaming at each other just recently, which I always enjoy. I don't suppose that two days of pre-cycle spotting and wild hormones and tormenting myself with the possibility that no normal cycle means I could be pregnant have anything to do with my contributions to that. I am so exhausted and even though I know his impending departure is making me more upset, and even though we have now made peace and stopped yelling, I will be so relieved when he's gone. I want my house to myself.

Of course, in addition, I can't wait for his travel schedule to be over in a few months. I know that I'm blessed to have a husband who loves me (difficulties we may have, but we know we have a good marriage), but this past year has been nothing but bad for our marriage. This is no way for people to live.

And in other news (actually sort of related)...a coworker told me that a local law school hires working attorneys to teach legal writing courses. This is an amazing opportunity in that I am, superficially at least, perfectly qualified to do it. My attitude toward applying for something super-competitive that I'm technically underqualified for, like a full-time position teaching law, is the same as my attitude toward planning for a pregnancy: it's not worth wasting five minutes or a single sheet of paper, because long shots pan out all the time - but not for me. IF has taught me to give up hoping not just for a family, but for finding a happy life at all.

So, anyway, it's a blessing to have something to think about that doesn't require hope for an unlikely outcome. Based on what little I know so far, I'd be a natural choice for this program - if not this year, then in a few years. And that would be a baby step toward making something I'd really love (teaching) eventually, through many more baby steps, become a likely outcome - something for which I don't have to raise my hopes at all.

Thus, my broader goals: figure out what in my life would really make me happy. (I have been pondering on this for months, with no real clarity. Father's suggestions - I'm seeing him again this coming Friday - of adopting or working with the poor** are duds. Both of those sound like things that would make me UNhappy right now.) And then, maneuver myself to a place from which achieving that would be almost effortless. I guess that means my bottom line goal is - figure out how never to be seriously disappointed again. I don't feel I have the stamina for any more, for life.


*In early 2008 - pre-crash - they had advertised the total property at price X. Rapidly, also pre-crash, they dropped the price by 20% (so far, so good). Then they left it at that number for 18 months (pre- and post-crash) while it failed to sell. Then they took it off the market, and then recently returned it to the market, post-crash, at... .33% less than the prior price. No, I don't mean 33% or 3.3%; I mean .33%. As in, a third of 1%.

**Teens and kids excepted. That might be good, actually.

Wednesday, August 11, 2010

S/A wisdom, please

OK, finally found the piece of paper - phew! It's always a good thing when I can get my medical notes onto my blog before I lose them. (I had no idea that blogging would be this useful.) Here is what the results say:

Semen liquification: 30 minutes [normal range 0-30]
Semen volume: 4.5mL [2-6]
Consistency: normal
Sperm count: 122.1 million/mL [20-250 million]
Motility: 40% [50-60]
Progression Grade: "Sperm moving, no forward motion"
Abnormal Forms: less than 30% [normal is less than 30%]
Impressions: "Low motility with 1+/4 progression grade, other measured parameters within normal limits"

First of all, let me say, praise God that my DH stopped smoking 14 months ago. I am sure none of those numbers (especially the count) would be anywhere near that good if he hadn't.

My DH was told that the motility was the only real issue, but I think he just looked at it quickly, because it looks to me as though there are two abnormal readings there - motility (just a little low) and progression grade.

So what does "progression grade" mean? How high should it be? How big of a problem is it that it's that low? What sorts of things can we do to improve that? And what things can we do about the low motility? Are there any other numbers that the results have as within the normal range, but should really be higher? Is there anything we can do about those?

(I've heard that HCG improves - one of the sperm numbers, I have to look up which - maybe we could both be on HCG at the same time! That would be cute. Especially since our marriage will never result in either of us producing it naturally. And, I'm sure there are other remedies people have tried, and I would love to hear about them.)

Monday, August 9, 2010

wee update

  • I was supposed to get to see the first "my house" (see here, house #2, where I went through our 2009 visit in excruciating detail) Friday with our buddies the old-house lovers, who could give us a ballpark on renovations. (We need a ballpark to pick an offer price; even to discern whether we could make an offer.) But the dumb realtor screwed it up and failed to make an appointment, so we didn't get to see it!
  • Next step: find out whether the sellers accept a developer's offer to buy all three lots. (They really want to sell all three, so their not accepting after several days means he offered them pennies on the dollar, which they totally deserve.) If they don't, schedule another chance to see it if our friends will be patient enough to come out again! (Cross fingers!)
  • Found my DH a car this weekend! (It was supposed to be a surprise before he got back, but I'm a liiittle late there. He was a good sport though.) It's the second one I took to the mechanic to look at (first one had been in an accident). The misfit is not that good a negotiator, but for some reason won big here; I paid $1400 less than I had budgeted for! Still concerned that there's a body in it or something, but it seems to be on the up-and-up. And my DH loves it. One major purchase down, and he will no longer be driving my beloved Vibe!
  • I've decided I'm going to pester callmemama about seeing her RE. (First, I need to check whether this woman is covered by my insurace. So we're just on the germ of an idea.)
  • Had another interim thought about my IF treatment. I still need to get the results (and any further prescription) from my last thyroid test. I swear they're intentionally avoiding me now. So I may need a higher dose there. I've also thought of a few more things. I need to figure out exactly what HCG regimen other IFers were on. I may want to lobby for that instead of femara - will do a little more thinking.
  • And, I had a thought about the surgery/months of irregular cycles/recurring cysts issue. I don't want another surgery this soon, not when it knocks out my cycle for seven months. I have no reason to believe Dr. L/C did a bad job; the cysts can always come back, and mine have always seemed aggressive. But - here's the epiphany - I could ask to go on depo for 3-6 months. That's supposed to shrivel the cysts and adhesions up without surgery, right? And your fertility is supposed to be highest when you come off of it (like surgery, in theory). I have no reason to believe that depo would knock out my cycle like surgery did, so it seems like it would be worth trying before going under the knife again.
  • I finally started taking my temps again. On a day in the midst of the fertile CM, CD12, it was 97.2; then starting the day after the last day of fertile CM: 97.8, 97.9, 97.8, no temp, 97.8 (that last is CD18). If those are post-peak temps, they're low. (I used to be around 97.7 pre-peak and 98.2 post-peak.) Why would my default temps have dropped? I'm on thyroid now, and I wasn't before. Fertilityfriend says I haven't ovulated yet (but I didn't give it a lot of early temps to go on). Guess I need to collect more data for next cycle...
  • My DH finally got his S/A results back. There's one low-ish number, motility, but they are way better than I expected, actually (I think 112 million/mL or something as a count - that's pretty normal!). I don't understand some of the notations, so I'm going to post them in full to get the expertise of the IFosphere. Stay tuned.

Wednesday, August 4, 2010

lessons

Sometimes I see things from which I don't know precisely what conclusion to draw, but I'm sure they mean something to which I should be paying attention.

Last night I called Aunt #3 (I have four aunts on my mom's side - big Irish family, you know...) for an update on my grandmother, who appears to be dying (she has rallied but is not expected to go home from the hospital). After updates on my grandmother and my mother (in great physical health and under care to work on her mental health as well - apparently with some progress lately), Aunt #3 said something or other a second time about how I would be such a good mother after having dealt with all this insanity as a child. I felt two comments required a response, so I said, "Well, that probably won't happen," and she responded with the obligatory, "Well, you're so young," and I felt it necessary to point out that after five years and lots of doctors, "young" didn't mean a lot and the odds were just plain low.

I know that this aunt has one child (from her second marriage), and if I do the math...I guess she had my cousin when she was 39? Maybe 37? So I thought there might well be a story there, and after I explained (in a decently successful attempt at brevity) my diagnoses and treatment so far, I actually did hear the story.

My Aunt E was married fairly young; we'll call her first husband Sam. When she married Sam (as I learned for the first time last night), she already knew he had testicular cancer. I'm not sure whether it was in remission at the time they married, but she knew it was impossible for him ever to have children. She married him knowing that he was all the family she would get, and she was happy with that because she loved him. But the cancer killed him after they had been married only a few years. In her thirties, she married my uncle - we'll call him Jim. It turns out they had a lot of trouble having children too. They had tried all the treatments and whatnot - she decided that IVF and ART were not for her, but she had been seeing a doctor - and they eventually decided to go with adoption. At that point, the pursuit of children had effectively taken over their marriage.

She said that in their entire marriage, she has seen him cry only twice. And the second time was then - they were going through the adoption process, and he finally broke down and told her, "I can't do this. I'm not going to court some eighteen-year-old for her baby." She thought about it, and she realized that her whole life had become about having children. It was driving them apart; and she realized she was jeopardizing her marriage. She concluded that being married to him was all that mattered. They decided that they would spend the rest of their marriage with just the two of them, and they found that they were really happy. Not long after that, she found out that in an effective medical miracle, she was pregnant with my cousin, but was never able to have another child.

She told me that - of course - she loves my cousin. But she said, with a conviction I couldn't possibly dispute, that she would have been just as happy if she and my uncle had never been able to have children. "You can have a happy life even if you never have kids," she said. I think it's easy to say once you get your baby that childlessness wasn't, in retrospect, so bad. But I think it's different to say as someone who truly accepted - happily - the idea of living childless, who had really embraced that life. And it's also different to say it as a 59-year-old, looking back on decades of marriage, and appreciating your child, but really understanding what it would have meant to have your whole marriage without her, and knowing what it means to say that you could have been happy either way.

I'm not saying that I understand how she feels, because I honestly can't look at my life right now and say that I will be perfectly happy if I can never have children. Maybe it's true, and I hope it's true and I come to understand it soon; but right now I can't see it. But talking to her, I believed her. I don't believe she's deceiving herself, and I don't believe she was lying, or embellishing, or sugar-coating, or...well, she's just not that type. And I can't dispute the wisdom of someone who has been there, plus a generation, and gotten to look back on the whole thing.

So there you are...for what it's worth.

Monday, August 2, 2010

it's over, isn't it?

I started using fertilityfriend.com recently, as part of my agreement with my husband that we'll both take responsibility for the ttc - so he has a source of information he can access whenever, wherever, that tells him where I am in my cycle and what it means. As a result of that, I've been paying a little more attention to my symptoms (I was just writing them down and not thinking about it before), and as you know, with IF, thinking is bad.

I realized that for the last approximately two cycles, the ovarian pinching I've felt every now and again since surgery is much worse. It's genuinely painful, it's increasingly frequent, and it is in no way tied to ovulation. That means I have cysts. I'd be happy to open a pool, but I'd guess at least 2.5cm on the right side, and probably one on the left side as well, but much smaller.

Let's do a brief recap on the timeline: surgery October 12, 2009. Told that the year after surgery would be my "best chance" of getting pregnant. End of 2009: 17-day cycle, followed by a 12-day cycle. Went on tamoxifen in December and January - in December it seemed to help, but my cycle length and fertile phase timing were all screwed up in January, despite two months of the drug - plus horrible side effects. I quit the tamoxifen. I then had my annual exam, and Dr. L/C said that I should schedule a consultation to talk about fertility meds. I canvassed the blogosphere for suggestions, since I didn't want any more tamoxifen, or clomid either. Had my appointment, and she said femara was not an option since I don't have PCOS. Y'all didn't agree, so June 15, 2010, I sent her an article about femara use for non-PCOS patients and requested she consider it for me. She has not responded to date.

The executive summary of the recap: surgery October, to restore fertility. First normal cycle May, seven months later. Cysts back aggressively by June. What restored fertility?

There's a decent argument to be made that the disease is now so far advanced (again) that I can't safely take any medication, even if the side effects are really mild, because it will send the endometriosis into overdrive - and, in any case, the vengeful cysts and adhesions will prevent a pregnancy no matter what I take. Which means - I need surgery this October, too? What the hell is this?

I don't blame Tepeyac for making me worse, exactly. I can certainly point out that I lost most of my CM (it has still never been the same, although it's getting close-ish lately) after my HSG; got hydrosalpinx in my one open tube apparently as a result of the tamoxifen; and knocked out my cycle for seven months as a result of the surgery. Whatever other problems I may have, it's hard to debate that lack of CM, blocked tubes, and no regular cycles will seriously interfere with conception. What I'm angry about, though, is that their patient communication methods make clear that they just do not give a damn. You'll pardon my language, I hope, but I can't think of another accurate way to say it. If I could communicate with them reliably, these would be things I had been discussing with my doctor regularly, perhaps even addressing. As it is, even though most of them are written in my patient chart, she's clueless. She never reads it.

I guess I'm coming to the uncomfortable realization that I don't have a lot of other treatment options. It's not just a matter of choosing not to drive to Pennsylvania or Nebraska to see a doctor (though I'm not willing to). But what would those doctors do about a patient who doesn't start menstruating normally for seven months - and grows cysts back within eight? I mean, of course, I could always ask them, but I feel I've played phone tag with enough doctors for a lifetime already. Besides, if the answer involved tamoxifen or clomid (which I bet it would), that would be a dud, anyway. I don't need to turn into the roommate in Single White Female just to earn my I-did-my-IF-treatment-hardcore badge.

Which brings me, at exhausting long last, to the bottom line, which is: I don't know what to do. I don't know what options I haven't tried that could have worked. I don't know what realistic options I have for the future, and which would be responsible to try. I don't know whether I'm worse off for purposes of any future treatment attempts than I would have been had I had no treatment the last 18 months - but I suspect that that is the case. If it is, what can I do about that? Giving up is always an option, and it's always been one I've planned to take up at some point, but I've always assumed I'd have an opportunity to make that an informed and responsible choice. I didn't think I'd go through all this and know less than when I started.

I'm so monumentally exhausted by all of this, and all I can think of is that the next step is that they take out everything except my vagina, and that's just so damn grotesque, and I just don't know what else I can do.

And please, if you feel some temptation to type the words "Dr. Hilgers," offer it the hell up and go comment elsewhere. If you've never ever read this blog before, I'll acquaint you with something I've pointed out often: I'm not Muslim, it's not Mecca, and I'm not driving to Omaha for infertility treatment. While I understand and respect the fact that, unlike my current clinic, they make some effort to communicate with their patients, I do not see any way in which my treatment experience will be improved by working with someone who is hundreds of miles away - and would require me to spend more time down there than I have in sick leave for a year - and is not covered by my insurance. To say nothing of being in treatment for infertility becoming my full-time job, which is about the only thing I can think of that sounds more dehumanizing than what I'm already going through. Thank you.