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Monday, May 14, 2007

Looking Backwards

Musings on last week.

What do you do with betas of 5? At my clinic, they call you and simply say, "I'm sorry, it was negative. So I'll transfer you to the front desk and you can schedule an appointment for day 3 bloodwork." My nurse generally went through changes in the upcoming cycle that my doctor had listed in my chart as a "next step." Anything less than 10 gets a "negative." Anything over 10 gets a number and a follow up appointment for a second beta.

I never questioned it.

Recently, I was talking to research chickie extraordinary, Jackie, who has the unique position of holding a PhD in endocrinology and physiology while going through treatments and she told me that it's possible for an embryo to secrete a small amount of hCG after fertilization but prior to implantation. In other words, my betas of 5 could mean that fertilization took place, but not implantation.

Why are these cycles written off instead of being considered as a small piece of a larger puzzle? I know the answer is that my doctor probably doesn't have as much energy to scrutinize my individual case as I do. He probably looks for the big clues, treats the obvious problems.

But what do I do with betas of 5?

I don't mean in the emotional sense--a negative is a negative. But in the puzzley sense? Do I throw out these betas too? Do I become assertive and discuss my own thoughts? Do my thoughts count for anything because I am an emotional infertile woman who is way too close to her cycle to see it clearly?

And what does it mean when I look back now, finding out three years down the line that a beta was a 5 instead of the assumed zero and see that I wrote in my journal that intuitively, I thought I was pregnant. I was sure I was pregnant.

***

On the same day that I found out about these old betas, my neighbour called me early in the morning. The kids were calling out their usual threats to me for answering the phone rather than focusing solely on them: they would eat the cabinets, they would pour jelly in their hair. I could barely hear what he was telling me so he needed to tell me a second time.

They're getting a divorce. I never knew anything was wrong. The few times when things felt amiss, it could easily be explained with an excuse. He was gone for a bit, but it turned out he was visiting family. She answered the door once and it was apparent that she had been crying. She told me that it was witching hour at their house and I assumed that she had been crying in frustration during her childrens' tantrums.

They had been in counseling and they had considered separation, but life jumped straight into divorce when he discovered that she was cheating on him. The night before, my husband had been cutting up an apple in the kitchen at 9:30 p.m. when my neighbour drove to confront his wife at the hotel where she was with another man. Josh saw him drive away and noted in the back of his head how strange it was that he was going out at 9:30 p.m. on a Sunday night. A father with two young children in a suburban neighbourhood. Josh didn't say anything to me until I told him this story.

When you look backwards, all of a sudden you see the witch whereas beforehand you only saw the beautiful lady.



***

I don't even know what made me focus on the betas or why I called my old nurse at the clinic to have her go backwards through my chart. She read off the betas, though kept reminding me that the clinic considered them negatives. I thanked her and hung up the phone and wrote the results on the back of a post-it note and brought it to my new OB's office the next day.

He looked at my history and he looked at my diagnoses and he looked at the negative beta numbers and the IUGR and he slipped the pieces of the puzzle together. "Has anyone put you on baby aspirin?" he asked.

I shook my head.

No one had yet tried Folgard and aspirin. I wasn't even on good prenatals. He gave me the name of a different hematologist, wrote out a referral for a new progesterone test, prescribed the prenatals and Folgard. He asked how I felt about trying on my own for a bit longer--maybe six months or so--with lovenox injections.

Do I want to do injections? Not really. But IVF involves injections too so it isn't as if one path has fewer needles. Do I want to conceive in my bedroom? Very much so. Is it a silly thing to be attached to when I know that the goal is a child? Yes. But how many of you would turn down the ability to conceive in private if it meant waiting a few additional months? Am I the only one who doesn't want an audience?

***

Before I called the nurse to find out the levels of those old betas, I saw both their cars outside. It was hard to think about what was happening under twenty feet away behind a few walls. I stayed out of the kitchen where they could see me through the picture window if they were standing outside. By the time I looked outside again, the cars were gone.

They came and went all afternoon. Sometimes they were home at the same time and sometimes only one car was there. They brought things outside, loaded it in their trunk and drove away for a few minutes only to return. For two hours in the early evening, I listened to a rhythmic thumping coming from inside their house. It sounded like they were constructing a makeshift wall. This will be yours and this will be mine.

I rearranged my plans to enjoy the early evening outside blowing bubbles with the twins. Who the hell wants to sit outside and unhelpfully watch someone take a life apart?

I went out to a meeting and when I came home, Josh was reading on the sofa in the back of the house. All the lights that were usually burning when I entered the house were off. He was sitting in the dark because the police had come by while I was at my meeting. He didn't know the details. They had stayed for an hour and at one point, the woman walked up and down the street, talking on her cell phone while the police were illuminated through her living room window. In the end, the man drove away.

We haven't seen his car since.

***

I asked the OB if he thought this was it--the missing piece that would get me pregnant on my own. "It won't fix the high FSH," he warned. "It won't fix low progesterone." But thrombophilia wasn't even something considered testing the first time around. Not until the twins were IUGR did anyone think to put all the pieces of the puzzle together and order those tests. Knowing that information years ago would have at least possibly staved off the IUGR even if it wouldn't have circumvented the need for treatments.

"Don't be angry with anyone," the OB warned. "This wasn't even on the radar years ago. It wasn't until the last year or so that people started thinking this through and finding the correlation between thrombophilias and miscarriage."

Like so many things, the entire landscape looks different when you look back in retrospect.

26 comments:

Bea said...

Wow. What a week.

To me, a beta of five is information, even if it's not a positive. I guess in the bigger scheme of things most RE's don't consider it to alter treatment, hence not attention-worthy, but it's hard for me to think like that.

Your neighbours. Huh. It's amazing what people hide.

Also, and this is trivial now, but I can't see the witch. Can you...?

Bea

serenity said...

Mel, ah... this post squeezed my heart. Because it's so very much like my own experience as of late.

What DO you do with betas of 5? Or 1.5? That was the level on my beta day of FET #1. (Or #2. I forget which.)

For me, hindsight is the most bitter part of this whole journey. The knowledge we have now... if someone had just put the puzzle together a LITTLE bit sooner...

... maybe some of those embryos that worked so hard would be our babies. They might be HERE. In my arms.

*hug*

Divorce always shakes me, no matter whether or not there's been warning or no. I am thinking of your neighbour...

Matthew M. F. Miller said...

Mel - you must feel exhausted just trying to keep all of this straight.

Our infertility puzzles aren't like normal ones - they are those cheap puzzles that are always missing edge pieces that make it feel impossible to solve.

You will find your piece, and your peace, friend.

LIW (Lady In Waiting) said...

It amazes me how I will be mulling over something and then find that a blogger has posted about it.

I have been thinking about (what I believe was) my premature miscarriage in November. I had a beta a week or so after the preg. symptoms went away and the beta came back "neg" but, in my teary, fuzzy memory, I could have sworn that he told me the number was 5. Until recently, from all I have learned from these blogs, I never thought about the fact that that number confirmed my sense, given my symptoms, that fertilization happened but implantation did not (the home tests never gave me 2 lines). So, thanks for sharing your story and for validating mine.

Your juxtaposition of your experience with your neighbor's marital dissolution was brilliant. Whether or not I know people, I always find it sad when I witness them in difficult times.

Good luck with your next steps.

Looking for Feedback said...
This comment has been removed by a blog administrator.
ms. c said...

Great post, Mel.
I'm glad that the new OB was willing to look at the puzzle as a whole and offered some "action".
You know that I'm rooting for you to have it "happen in the bedroom"!

I have always been confounded, too, by the super-low beta numbers discarded as "negative". It's not zero... something must have gone on somewhere.

That's terrible about the neighbours. But it really goes to show that you never know what's going on behind closed doors...

Bean said...

Hi Mel,

This was a really interesting post for me to read. I've been struggling lately in figuring out how much information I want to get from my clinic. My doctor definitely leans towards providing less detail. This has been just fine with me; I know that the more I know, the more I will obsess over every number, test result, etc. Plus, because our case seems pretty simple -- my tubes were compromised by lots of adhesions due to my emergency c-section -- I've assumed our puzzle was pretty simple (ugly, but simple). HOWEVER, as we passed the 2 year mark of TTC #2, I started to worry a little about leaving the puzzle pieces all in the hands of one person. And then I read your post today mentioning thrombophilia. I didn’t know what it is, so I Googled. Found out some interesting stuff. While I haven’t had consecutive miscarriages I have had 2 and my daughter was born at 32 weeks thanks to a placental abruption. Anyway, I have a feeling my RE will probably blow this off, but I’d like to ask them if they can test just to be on the safe side. Before I do that I’d like to get a bit more information. I’ve found a few things online, but am wondering if you know of any particularly good sources of information?

As always thanks for a great post.
Oh, and thanks for responding to my post last week and adding me to the blogroll. I'll admit that I actually teared up when I read your post. Finding the online IF community was the only positive thing about all this. Still, I never would have guessed how comforting it was to be welcomed and included by someone else who knows what it's all about.

Mindy

andrea_jennine said...

Mel, so glad that you have more information NOW. Here's to the bedroom!

Samantha said...

Things always look so much clearer in retrospect. At the same time, when you're going through treatment, it's tempting to start wanting to over-analyze, to consider each little blip, to try to find a reason for everything, when so many things are unexplained. However, it seems like reproductive technology is changing so fast, that those little details that at one point seemed unimportant, suddenly become indicative of more serious problem, but one that can be treated. I don't know how to draw the line between gathering important information and obsessing.

Divorce is always shocking. I had friends who got divorced recently. I didn't see them too frequently, but still had no idea. Then looking back, I started to wonder if that was why I didn't see them that frequently.

Michell said...

I hope it does work for you getting pregnant in your bedroom. I know that's how I would rather do it. And I'm glad that your doctor was willing to listen to what you had to say and not just ignore your thoughts on it.

millie said...

We just learned friends of ours are separating and are shocked. I guess I always thought it only happened to other people.

As for betas of 5, I tend to associate those with potential ectopics (or the fear of another ectopic) but definitely consider it all important information.

Hindsight is such a tough thing. I don't regreat much over the last four years but I really don't like to look back and think about things with what I know now.

MLO said...

I can't get over how much having a rare and misunderstood disease has helped me in dealing with infertility. I think I put both REs I saw in shock when I brought research with me once I got the overview of the land - DH is the same way (except no rare disease).

I'm so used to doctors missing things that I just assumed I would have to watch REs in the same way. When the first doctor did not react well to this, I moved on to someone who could deal with my way of being.

To me, infertility has been like having a common disease - because it is in comparison, a whole 10% of the population suffers. Anaphylactic Food / Drug allergy, on the other hand, only affects 1% of adults. Having dealt with both, I can honestly say managing infertility is easier from a practical standpoint. Managing allergy is harder. As to the emotional fallout, I have reserved judgment because, I might actually have a baby at the end of infertility treatment - but the allergies won't go away any time soon.

(Studies have shown that food allergy is the single most socially isolating disease of all chronic illnesses.)

Pax,

MLO

TeamWinks said...

It's amazing what hurdles life throws at you...be it betas or breaking bridges.

megan said...

you had a rollercoaster of a week, Mel! it sounds like your new OB was receptive and that you're in good hands. i'm really hoping for conception without an audience for you!

Aurelia said...

Mel, I'm so sorry.

Maybe because I've been through the wringer in the last 10 years I've just become naturally less trustful of Drs and more likely to question their numbers.

I ALWAYS get a second beta for anything higher than zero. Up I'm pregnant, down I'm not. I'm not saying a beta of 5 at 14dpo is a viable pregnancy, but my beta of 9 at 9dpo sure as hell is because he's eating popcorn right here on the couch beside me!

As for the Doctors assertion about only knowing this stuff in the last year...utter bullshit. I had all these tests done in 2003 in Toronto after my miscarriage, and they were considered standard practice in 2001 and 2002 according to my RE and the women at my miscarriage support group who all had them done then. Aspirin is sacred in my house for Chrissakes. He HAD to know about this in your city if it was considered credible enough to be a funded treatment under OHIP. That ISN'T an overnight process.

The endo/clotting gene connection test I had done in 2004 and the paper was circulating for peer review in spring 2005. Many of the thrombophilias were known waayyyyy before this as a problem with miscarriage.

I can't believe he had the nerve to say that to you...you have every right to feel angry. For yourself, and for your twins. I'm so so sorry.

Kris said...

Stupid hindsight.

I think any beta is worth knowing. If you are fertilizing but not getting/staying pregnant I think that's very different from never fertilizing at all. I don't know if the treatment is any different, but I think it helps to know where in the cycle things hit the wall.

Wen782 said...

What you do with it is just what you've done. Analyze it, roll it around in your head for a while, obsess over the what ifs, could've beens and am I crazy to think this or thats and then you file it away as a hmmmmm, whodathunkit.

I'm sorry you're finding reason to stress old test #s. My doc is VERY conservative about those 5s. It's usually a "looks like you did it, BUT..." moment. He throws the warning out that it could be something to look forward to, but in more cases than not, it isn't. Those suck, but at least he's honest, right?

I hope you're able to find some peace and comfort in getting another cornerpiece into place in the big overall puzzle. I hope you're able to get it all together.

My puzzle's still sitting here in the box. I'm blonde, dammit, what do they WANT from me? LMAO

Chin up, sweetie!!

PCOSMama said...

Crazy stuff about the neighbors. You'll have to update us if you find out why the cops were there. I'm one of those nosy neighbors who would be peeking out the window in a dark room to see what's going on. I can't help myself!

I'm so glad that you went back and got that information about the betas. It's always helpful to see a trend of any kind when you are dealing with infertility - it helps to determine possible problems and therefore solutions. You absolutely did the right thing by following your instincts, getting the info, and presenting it to your doctor. I'm glad they have an idea that may help you!

BTW, I think if you can conceive in your own bedroom then go for it! Who wants to conceive in a lab or doctor's office? So unromantic! Of course, sex on demand isn't very romantic either, but at least you can work with it....

Adrienne said...

Sometimes we look back at things, armed with new information, and we see what was there all along. In your case, that was a good thing - it brought a change in your protocol and a suggestion to keep trying on your own, rather than straight to another round of IVF. In your neighbors' case, it was a bad thing. I'd rather focus on the good, though. Good luck, Mel. You deserve it.

Cibele said...

It all feels like a huge puzzle to me. Like you and wrestling to fit all the piece together and get some answers... with a diagnostic of unexplained infertility, things look even more complicated as time goes on.
I hope we can find the answers you are looking for !

Mandy said...

I too had a time when I was convinced I was pregnant, only to have bloodwork come back as negative. I asked if there was any hcg present and told "the report says less than 5, the lab considers that negative." I later found that most of the time the local lab ONLY runs a true quantitative hcg level if it appears to be above 5, otherwise they consider it negative. I asked my RE if there was a way we could get the level regardless of what it is, and he seemed to think we could request that.

I'm proud of you for asking the questions, and I hope you are able to conceive in the bedroom given the new protocol. I don't think there's anything wrong with wanting to conceive as simply as possible, and there's something to be said for having *only* your husband in the room when possible.

Hell, even when we do IUI cycles we always try to time sex in such a way that there's a question about whether it was the sex or the IUI. Don't ask me why.

Oh, and my RE does have me on aspirin, but I was told it was for lining reasons.

Celeste said...

Mel, I definitely missed something last week. I'm so sorry about your "negative." I'm so thankful (while at the same time being pissed that we have to) that we infertiles take things into our own hands (and brains) sometimes.

That was a beautifully-written post. I pray you do get pregnant in your bedroom, somehow leaving the heaviness of infertility behind and finding that blessed connection with your sweetheart.

much love.
Celeste

http://light_of_unity.livejournal.com

Beagle said...

When I had my super low beta, my RE said she had seen 4's go on to become babies but never a three, so that was her cutoff for telling you and repeating a beta. I later learned that I had had at least one more beta less than 5 but not zero. I didn't know what to do with this information either. Though (and maybe this is because it's all I ever had) I think anything over zero is positive, even if it's "chemical" . . . HCG only starts showing up if the embryo at least started to implant. So to me that is not nothing. Of course I also considered each lost embryo to be a loss. Not in some extreme right wing religious sort of way, but in terms of emotional attachent to an actual living entity that I wanted so badly to have stay and grow.

I'm curious what the new doc makes of it.

As for the neighbors . . . wow, that would rattle me too!

Changing Expectations said...

Hi Mel,

Hearing about separation and/or divorce is always sobering. It is hard to see someone going through it while hoping that it never happens to you.

Re betas of five. I am not sure of my clinics policy on relating info below five, but they will retest at 5. I did have a five during my 3rd stim cycle and knew that that cycle was different somehow before I was even tested.

Each of my cycles has included a baby aspirin regimen in addition to prenatals. I was told the aspirin was to increase oxygenated blood flow and to help with the lining.

Thinking about you and hoping that the lack of audience will be just the ticket.

Sami said...

I had a bunch of low betas 3, 5, 4, etc etc... I did have a <1 which I assume is a 0, but that was as low as the test went apparently. I did the baby aspirin as well. I always had the numbers faxed to me rather than waiting for a phone call, but we all know I'm a freak like that.

sorry about the neighbors...

Piccinigirl said...

oh wow, I know I'm late getting here (as usual) but wow this post really hit somewhere inside for me.
Looking back has always been a bittersweet thing for me to do, you walk away with more information but not necessarily answers or the answers you want. Lately I have been saying "If we'd done IVF earlier, when I was younger" or "if we'd known the IUIs wouldn't work, we'd have been here ages ago!!"
Of course that is all wishful thinking.
I am sorry that you had to go back to go forward, but maybe that is the beauty of it. To have a reference point. To know that you can move ahead.

I too am shaken by the divorce. I always lived in fear of my parents divorcing, and when I hear of it today I am forced to to remember that good things don't always last and it's heartbreaking to me.

and as for the "audience", I am on the other side of the field these days. I feel like if I can get PG in my dr's office, maybe my sex life at home will be much better, much sweeter...that it will come home too.

*hugs*