Wednesday, December 8, 2010

in which the misfit issues a slight retraction; and, in defense of infertile career women

So I only ended up having to call Tepeyac three times before the nurse called me back. I feel bad because I must sound like a banshee on their answering machine. Three messages in an hour, telling them it's urgent and that they HAVE TO CALL ME BACK. But there have been days I have left just one or two messages (telling them, for example, that it has been a month and they still have not provided my bloodwork results), and never gotten any answer AT ALL. I don't want to be a monster (most of the time), but I feel like I don't have a choice.

Anyway, the nurse said that Dr. L could fit me in at the end of her day (i.e., stay later). I appreciate that. I really do. I know it's my fault that I couldn't get myself there at the time I had the appointment scheduled, and she shouldn't have to work later for that. However...I work around their schedules to a degree that makes my life extremely difficult and often makes it impossible to schedule treatment. And I know - I know - that if I had simply called the receptionist to ask whether it would work if I were 25-30 minutes late (my first call of the day), rather than calling the receptionist three times; or only called the receptionist three times; or only called the receptionist three times and the nurse once - I would never have gotten a monitoring appointment for yesterday. Or even for my next cycle. They're up-front about how they can't possibly see me during a three-week period (you know, when I need an appointment within a range of three days). But they don't volunteer anything in terms of what they can make work unless I verbally abuse them. What kind of arrangement is that?

So I appreciate the office being accomodating, even if I feel like I have to become the worst person in the world to get them to treat me like a human being.

Sadly, the happy(ish) thoughts end there, because the results of the appointment itself were a total disappointment. I wanted to know: (1) do I have endometrial cysts again (I am convinced the answer is yes); (2) if not, what is making my ovaries hurt; (3) have I actually ovulated, or do I have an unruptured follicle; (4) what is the thickness of my lining. It was logically impossible to get answers to fewer than three of those questions. How many answers do I get? One: my lining was 1cm, which is good. Isn't that nice - a great implantation site for my eggs that are never fertilized.

So, how is this possible, you ask? Well, keeping in mind that I am neither a gynecologist nor a sonographer, here's my understanding. On my right ovary there is a 3.5cm cyst. (Dr. L/C didn't think that size was anything remarkable, but I've had a lot of cysts, and that's not small! Certainly enough reason to cause pain - I had right-side ovarian twinges just yesterday before the ultrasound, and I have to assume they're related.) It has blood in it, so it could perhaps be an endometrioma (it's my cyst, and that's what I think it is), but Dr. L/C was more inclined to think it's a hemorrhagic corpus luteum. The fun part is, she tells me, with a hemorrhagic corpus luteum, it's not clear whether it ruptured and released an egg, or not. So I didn't even get that answer! Good news or bad news - I don't even know.

She didn't find anything else of note on my ovaries that would explain the pain. But, she couldn't find my left ovary at all. I remember AYWH said she often had this problem, so I didn't freak out. I can't imagine she would have given me a post-surgical debriefing last October and omitted to mention that she removed my left ovary, and I had one before that, so I have to assume it's still there, and hiding somewhere.

Here are a few other complications I thought of: my CM pattern indicates that Thursday was definitely peak day - nothing at all after that, and a good five-day pattern before. And on Friday my temperature spiked (it never happens that fast for me, so I was delighted). But when I took temperatures again on Monday and Wednesday, it was just 97.7, which is the same as several pre-peak temperatures. That makes the cycle look anovulatory, but...why the textbook CM pattern, then? Presumably if the pre-peak pattern is that clear (i.e., high estrogen), a corpus luteum at least formed...and maybe didn't rupture? But in that case, where was is? The cyst she found would be one candidate. But if that cyst is an endometrioma, where did the corpus luteum go? I assume here that the left ovary would not have been invisible if it had had the corpus luteum, since those are big, right?

Finally, we discussed medication options. I said that until we can rule out further endo activity as the cause of the pain (and the cyst), I don't want to take tamoxifen, clomid, femara, or anything that stimulates ovulation. Especially since the beginning of my cycle looks normal, and I've always figured I was ovulating. But the end of my cycle is clearly weird. So she gave me a prescription for HCG shots, which I will fill soon, and be able to take next cycle.

With respect to the cyst, I am going to set another ultrasound appointment for pre-peak, two cycles from now (next cycle that phase will be over the holidays), and if the cyst remains, we know it's an endometrioma.

Oh, yes, and lastly: I am going to continue getting treatment at Tepeyac as long as they have something to offer me. If I find out another doctor can do better, then I'll switch. And TCIE, yes, the distance is precisely the problem. Scheduling appointments around work is already such a headache I am often tempted not to make them at all, and Tepeyac is under an hour from my house (around two hours from work). If I switched to Dr. S, as a practical matter, I would cease to get treatment at all. I cannot have my job and undertake that kind of travel for regular treatment. I think most of the people who are able to have variable/non-traditional work schedules, substantial amounts of regular time off (i.e., academic calendars), or don't work. I know there are exceptions (people who take two or three straight weeks off to go to Omaha, for example), but I don't think the typical American job makes that remotely feasible.

I think this may be one of the many fronts in which I'm a freak from the point of view of other infertiles, and I'd like to get this explanation out there. I wanted motherhood to be my primary career, and was willing to give up being a lawyer for that. I think being a lawyer is good (there are benefits and drawbacks). I think being a mother would be better. I think being in treatment for infertility ranks somewhere above having my fingernails pulled out with pliers - just above. Another woman who had been willing to put motherhood first, the way I wanted to, would just have sent her eldest child off to start school this past fall. I have spent that same period dealing with, or being emotionally incapable of dealing with, fertility treatment. Conceivably (no pun intended) I could spend the entire period it would take a child to get from conception to moving out to go to college, getting treatment. Many people seem to see being in treatment as part of being a mother. I see the two things as so different I can hardly even fathom a connection. It's like the difference between being an artist and being waterboarded with paint. Would I accept being an artist for five years? Sure. Waterboarded with paint? Obviously, no.

I fully understand that a lot of the other IFers (the majority, it sometimes seems), work on a schedule that offers three months off (plus multi-week holidays); or work on a flex-time schedule; or work with the medical facility that offers their treatment; or don't work at all. For people with these arrangements, I imagine that the hassle of getting treatment seems like a small thing, such that flying to Omaha or making a two-day trip out of seeking treatment in Pennsylvania would appear reasonable. To do these things, I would have to accept that I cannot actually be useful to my employer. And I would have to put my job in jeopardy in that fashion for the sake of treatment, which I hate. Hate. Which, for me, has almost no hope of success - I'm just checking a box. I cannot even imagine a rational basis for doing that. So I am always surprised when somebody suggests that I travel farther than I already do, or undertake treatment more inconvenient than the serious inconveniences I already have. I know other people make decisions to do this, and I respect their decisions, but I cannot understand them.

It's obvious to me that others are no better able to understand me (this is even harder to comprehend, but I have to assume that it's true). That's why I get so many comments - in person and on my blog - about "why don't you just go to __________." Even "why don't you just find a different doctor," while apparently an obvious comment, doesn't make a lot of sense. Finding another doctor who will offer the treatment I need (and am willing to accept), and accepted my insurance (not willing to pay out of pocket when insurance is part of my compensation for my job) would probably be worthwhile, if it did not entail a 40 hr/wk job in itself, and if it were even possible, which it may or may not be. But it's certainly not simple. Again, if I did not work, it might be; I'm not sure.

So, in sum: I'm divisive, argumentative, often belligerent. Even if I get angry about it, telling me I should just do x or y for treatment is probably fair game. But I am not sure that every infertile wants to have every one of her difficult decisions picked apart by the peanut gallery on a regular basis. I don't even criticize people's decisions to use IVF, and I disagree with them morally. (I might take up the issue in a one-on-one in-person conversation, in which the other woman had an opportunity for give-and-take, and I could see whether I was upsetting her.)

However good your doctor is, or your treatment regimen is, or your herbal remedy is (and this isn't directed at you, TCIE - I have no problem with you cheerleading for Dr. S, this is a broader issue I want to take up), telling someone else that that's what she should be doing has the underlying message that she is not doing a good enough job finding treatment; that however much treatment takes out of her emotionally, it's inadequate; that she doesn't want to be a mother as much as you do; and, perhaps, that if her treatment is ultimately unsuccessful, it will be her fault, because she didn't do everything she could have done.

After all the hurtful things the world says to infertiles, I think it's our obligation not to heap more criticism on each other. (I generally distinguish "have you heard of" or "you might be interested in" or "I've heard"-type comments as being harmless and merely sharing information, but other people might not take these in the way that I do. For anyone I've hurt with my comments, which I hope were merely unintentionally judgmental, I'm sorry.)

Again, I appear to think differently from at least half the infertile population on most matters, so if you take a different perspective on the suggestions to others, please chime in - I am interested to hear what others think.

10 comments:

  1. No personal offense taken, in fact, I for the most part agree with you. My question (and I think you figured this out) was not rhetorical in the least, I honestly just think I missed your post as to why you decided against C.f.W.H. Now I know :)
    I also felt like I did NOT want infertility treatment to become my career (if it had been, then damn, I would have been on Forbes list for sure), which is why I was so hell-bent on furthering my real career/s once I realized there was little chance of my uterus getting a job.
    Finally, I don't think you're alone in your thoughts about how unintentionally hurtful some comments can be about "just try Dr so-and-so" or "if you gave x treament a shot, you may get pg" because, after all, it worked for Aunt Sally and cousin Betty and the neighbor kid's mother's best friend from college. I wrote a post about this a while back, and likened it to the climbing wall... each new step we take may get us one step closer but we COULD also lose our balance altogether and fall to the ground. (Something like that.)

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  2. Um, whoo, where do I start? As an infertile career woman, I totally get what you're saying. [My NaPro surgeon's nurse just called to answer my "What about an HCG trigger?, with "you'd have to get daily ultrasounds to know when to do the trigger."] Makes sense to me but wholly unfeasible since the doctor is three hours from me through some of the worst traffic in the entire world.

    So, I feel your pain when it comes to making work an honest priority and still juggling infertility treatment. That's my lot in life. I just happen to have an employer that pays me quite a bit of money and doesn't mind if I slip out for an hour or so. I don't push it because it doesn't feel right.

    I think I'm one of those women who said to you, "I used to live in DC, why don't you use my old elder statesman doctor." You inspire my natural empathy because I really like "divisive, argumentative, often belligerent" women because I'm like that. It's hard to read about your genuine frustration with Tepeyac and not offer some kind of helpful advice.

    I'll refrain from comments like that in the future. But, as a speech giver, writer, all-the-time talker, I assume that if someone didn't get what I was saying, I didn't say it right. Or they are just lazy and didn't pay attention to me. So, that could be my problem in understanding your personal experience.

    I'd like to close with sage advice but I'm not so good at that. I know personally that infertility hurts and getting treatment for it in America is a cruel maze of options (sometimes I wish I didn't know about the Creighton Method for all the obsession with cervical mucus it rakes on my brain.)

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  3. While you and I fall on opposite ends of some things, this is one where we are in total agreement. Yes, I no longer work and have traveled 600 miles to see a doctor, but I have been on the other side, too. I can honestly say there is no way I could have undergone any of the treatment I have with the job I had. Even with just my local doctor whose office is open 6 days a week and open from 6:30 am for u/s and blood work. (doctor had traditional hours, but the lab was open early and on Sundays). It wouldn't have been doable (again, with my specific job) simply because my cycle doesn't cooperate with a schedule other than it's own and my days, when traveling, often began before 6:30. As is, I'm completely overwhelmed. It just would not have been possible. Period.

    However, I will add that it is irrelevant if you work or not, if you have insurance coverage or not, if you have the $ or time to seek out-of-state doctors or not. We all have our own path and choices to make and really should not have to defend those decisions. It's wonderful to share information (have you heard?, do you know about?) about doctors or treatments, but after that, let the person make their own choices. Be a friend, and respect it. Having people tell us what we should be doing does send the message that we aren't doing enough and that it is, ultimately, our fault. I was on the receiving end of this several times about a year ago and I truly felt like I deserved and/or caused every miscarriage. It was brutual and not helpful or supportive at all and I think my feelings about were very much reflected in the fact that I cut back blogging a great deal and certainly did not share much medical information. I have no doubt that it comes from a benevolent place and try to remember that, but it just isn't being supportive.

    Sorry to add to the rant. You better post Christmas decorating pictures ;)

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  4. It's possible that people who have the advantages of a clinic close by, or a flexible employer / enough holiday time, may not realize what challenges you have in navigating the road to the right treatment for you. That's why it's great that you wrote this post and put it out there for others, with a different experience, to realize what it's like.

    Please, accept my apologies if I have worded anything in a hurtful way. We are all doing our best to find the best pathways for ourselves ....

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  5. I understand your desire to avoid taking on treatment as second full time job. I'm glad you at least got your appt even if you didn't learn all the information you wanted. I hope that they'll improve their communication skills or that the time for your appt with the other doc will come quickly and the other doc will help. Sorry that you feel like some people's comments are implying that you aren't being a proactive enough IFer. Most people I think just want to help and make sure you're aware of all your options.

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  6. I am one of those "lucky" infertiles that can take time off fairly easily and I have been lucky enough to be able to afford some alternative medicine (although I try not to think about what I'm paying!). IF is a crazy game. I wish sometimes that I could be more agressive, but I am not willing to sacrifice more of my life. My doctor suggested going to Omaha and I flatly refused. I believe that I've received fantastic care and I'm not going to empty my bank account!

    I can hear the frustration in your words. I feel so often that I'm working against nature and that I should just throw in the towel. I'm praying for you!

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  7. You are totally right--it's each person's journey, and each person's choice (and each person's situation). No one person has the same journey as another, though many of ours are similar. Nobody has a right to tell you how, where, or when to get this treatment or that treatment. I do think Mrs. Blondies is right...most people probably just want to be helpful and aren't aware that they're not succeeding. Sorry if I have said anything that was hurtful, I would never want to do that.

    I can tell you that even with living in Omaha, even with having a fairly flexible job schedule, it is still difficult. There is so much juggling involved with all of this, and you're right--this part of it is not motherhood. Your artist comparison was spot-on.

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  8. While I was working, I used every single one of my sick days and most of my vacation days for either surgery & recovery or dr. appts. And I had 3 wks (total)! That is a lot of days out. Theeeennn, I was able to make early appointments and just work late that day or extra hours the next if I had run out of sick days. I said multiple times to my husband that I had NO IDEA how I would do all of that (and I wasn't even doing IF treatment - just trying to deal with the endo) with a different job!!!
    I can't blame you at all for not wanting to drive HOURS to a doctor. I flew to Atlanta for surgery after 2 botched ones locally and as a last resort. BUT, again, that was for treatment of endo, not IF treatments. So...yeah, I can definitely get where your coming from. Some of us just aren't able/willing/can't afford to spend so much time and money on treatments that way, and there's no right or wrong about it! It's a personal choice! Just like people who never even touch IF treatments and go straight to adoption. Most people find a balance, a certain number of appointments or treatments they're willing to do and I think that is perfectly healthy.
    I've read so many times of women exhausting every treatment option, every last dollar in savings, and then having a baby and saying it was so worth it! But then I've read of the other side - those that exhaust all options, drain all of their savings, and DON'T end up with a baby. And following that their marriages fail, they are passed over for promotions or no longer have job satisfaction, and they are miserable. So all of that misery and STILL no baby.
    Still, women can't help but offer advice. I know I still do it! Even in the IF world, even though we know how it feels to get assvice, it still happens. We're only human :).
    I generally try not to speak up unless someone is asking for specific advice, but sometimes I do anyway and just hope it's well-received. I know I have a hard time refraining anytime anyone is asking about endo or hypothyroid especially :).
    Anyway, I'm really looking forward to Saturday morning! Is our meeting still on?

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  9. This and the comments were super interesting to read for me, at this stage in my life. I'm finishing up my degree, which at this stage in the game feels like choosing my career over being with my husband 100% of the time and a potential shot at motherhood (although I do feel like I should finish what I started - so there's 'not wanting to be a quitter'). but what happens in may when we move to a new place together? he's got a job, but i don't as of yet. do i take time to do the infertility treatment circuit? do i try to look for a job and hope they'll be flexible with the treatment breaks? i have absolutely no clue. i knew in an instant i would quit my job to be a mother but to quit my job at just the chance of being a mother? that seems to require more faith than i can muster at this moment.

    i do know that my adviser had fertility issues (repeated miscarriages I know for sure) and she ended up taking a sabbatical (she doesn't even have tenure yet) for what seemed to be in order to give conceiving one solid try. luckily for her, it worked.

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  10. I completely agree and understand. I think trying to manage both is insanely difficult and makes things a million times more stressful, and I also agree that I don't want to give up any more money, time, etc. because I have serious doubts that any of it would work (aside from IVF, which I don't want to do). I totally see where you're coming from, even though I wish we were both somewhere (figuratively) else.

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