Suicide Bombs and Sleeper Cells

One of the many great delights of being pregnant was that it put my endometriosis in remission.  Now that I am breastfeeding, my hope is to enjoy at least another full year of feeling fabulous.  I also hope to keep my knees together and stay out of the stirrups, 'cuz I'm a lady.  

These days, my mind is usually occupied with happy things, but sometimes I worry about what awaits me when the endo becomes active again.  I picture the endometrioma(s) on my lone ovary as suicide bombers just waiting for the chance to blow it all to hell.  

And of course there are all the other endo implants lurking who-knows-where.  Right now they're sleeper cells,  but they may become quite menacing once activated. 

I've already had some familiar, though short-lived pain since Mei-mei was born.  Alarmed that the sleeper cells may be reactivating so soon, I reported this to the proper authority.  According to my doctor, the pain is likely caused by my innards yanking on some adhesions as they shift back into place.  

My doctor also mentioned birth control.  Ha!  He said he's seen miraculous post-IVF pregnancies, but I don't think that will happen to me.  Improbable things don't happen to me!  I don't know whether a do-it-ourselves pregnancy is impossible or just extremely improbable.  Maybe adhesions have distorted my anatomy.  Or maybe my only tube is blocked.  I have no intention of doing any sort of tests to find out:

As far as reproduction is concerned, Q and I are taking a laissez faire approach. I'm 99.9% certain that we can't make another baby just with tools we have around the house.  While we would welcome another living child, we have no intention of messing things up by risking another traumatic loss.  Not that it's up to us anyway - thanks infertility!  The objective now is to relax and enjoy our lives sans fertility treatment.  For me, no more charting, no more injections, and no more planning my life around doctor appointments.  For Q, no more Wacking Day, no more Uplifting Reading in The Back Room, and no more dealing with an erratic hormonal wife.  Ok, so maybe he's not totally off the hook on that last one.  

Since our story has reached a very happy ending and there will be no trying again, the time is nigh for signing off on this blog.  But first we will be having a little contest and giveaway, so stay tuned!

If you want a happy ending, that depends, of course,  on where you stop your story.  -Orson Welles

In the Closet

First, a cycle update:  Today is Day Six of stims and the first ultrasound.  There are seven follicles between 10 and 16 mm.  This appears to be a great improvement over last cycle, which had just two measurable follicles at this point.  I wonder, though, if one or two of these are actually shrunken endometriomas?  One definite endometrioma is at 2.7 cm.  Sure wish I didn't have this confounding factor to deal with this time around.  Trigger is projected to be on Tuesday, after just seven days of stims.  That's three days shorter than last cycle.  As always, I'm wondering if that's a good thing or a bad thing.  More appointments tomorrow and Tuesday.  Until then, I'm trying not to obsess about everything too much (ha - too late!).  And I'm definitely not talking about it anywhere but here.

I've never been very public (in real life, at least) about my infertility.  It's easier to keep it quiet with secondary infertility.  Plus, since I've had two late losses, I imagine many people think I've just given up.  So for this IVF cycle, I've decided to go with a strict Don't Tell policy, except with a few family members and geographically distant friends.  I'm just trying to prevent the news from getting out in my immediate circle so I don't have to deal with unexpected questions and comments when I'm out pretending to be a normal person.

I wish I didn't have to lock myself away in the infertility closet, but it's just not worth the effort and aggravation of being "out".  I'm not willing to risk platitudes, stupid comments, judgment, and gossip.  I know that being "out" can help others better understand the difficulties of infertility and how to be more sensitive towards those who struggle with it, but I'm too beaten down to care. 

How about you?  To what extent are you in the infertility closet?  Do you try to help others understand what infertility and/or loss is like?  Do you want family and "real life" friends reading your blog or do you try to limit readership to others in the loss/infertility community? 

None of my local friends and acquaintances know of this blog (except other local bloggers I've met - Hi girls!).  I aim to keep it that way.  If everyone around me knew, I imagine that blogging about such intensely personal matters would begin to feel something like this:

What Not to Watch

One evening when I was bored, I considered watching this on Netflix:

Has anyone seen this? I ended up watching something else and I'm glad I did. A friend has since told me it's quite scary and offers little in the way of hope for the chronically stressed. The title alone is enough to stress me out - Stress: Portrait of a Killer.

We all know that many health problems are caused or exacerbated by stress. According to this documentary, prolonged stress can "shrink our brains, add fat to our bellies, and even unravel our chromosomes". After nearly four years of extreme unrelenting stress, I don't even want to think about how badly my body has been damaged. Or how much my life has been shortened.

My vacation was quite relaxing and actually almost pain-free, which was fabulous. The insurance issue, though, has continued to be a major source of stress. I was unable to get any clear answers regarding what my new insurance covers. The benefits manager at my husband's work was likewise unable to get any straight answers. Finally today the clinic's financial coordinator called to say that she finally got a response from the insurance company. They will cover exactly nothing. Not ultrasounds. Not blood tests. Many insurances that don't cover infertility will at least cover that. But not mine. Figures.

I think keeping COBRA coverage under these conditions is legitimate, although I'm sure some would disagree. It's a grey area I plan to take advantage of because it's high time something works out in my favor. We have $1200 in infertility coverage left on that policy and I intend to milk it. I'm glad to finally have some answers, painful as they are, just in time to get the COBRA premium paid. Why do we always have to cut these things so damn close? [Speaking of cutting it close, don't forget to enter my contest (see last post). There are just three days left!]

This employer-based insurance system really doesn't make sense. Why should an employer dictate my insurer and coverage? Having the government do it would be worse still. I want to be able to compare insurers and plans. I'm smart enough to decide what makes sense for me and my family. So are you! Power to the people!!

The Lovenox Dilemma

I posted before about my Lovenox dilemma: whether to start it now or wait until there are (hopefully) rising betas. Quite a few people shared their experiences and comments, so I thought I'd write about how it all shook out. I called the perinatologist and she said she wouldn't prescribe Lovenox until rising betas, which is what my RE had said. With my terrible pregnancy history, this makes me nervous, especially since I know a lot of doctors have patients start from transfer or earlier if they're doing IVF.

Of course if I'm not able to get pregnant even with IVF then it is not an issue, but in optimistic moments when I think I really could get pregnant, I've wondered about getting some Lovenox on the black market and using it before the pregnancy test. It is easy to do, but that option would also would make me very nervous, especially in light of the fact that prescription drugs may have played a role in two of my siblings' deaths.

It sounds morbid, but my sons' deaths pull me in one direction on the Lovenox dilemma

and my siblings' deaths pull me in the other direction.

If I could get the drug from a doctor or even just someone I know and trust, I would do it. Getting it from a total stranger is just too risky not only because it may have been improperly stored, but also because Lovenox is an expensive drug and there is more incentive for unscrupulous people to try selling expired, damaged, or even counterfeit Lovenox. I just can't go there. For now, all I can do is make sure to take baby aspirin religiously. So that's where I am on the Lovenox question and I hope I won't regret it.

Right now I'm just hoping for happiness ahead and also missing these four people that I love. They all died young, tragically, and very suddenly - there was no time for goodbye. In the cases of my sons, there was no time for hello either. Is it any wonder I want so desperately for my weeping to be turned into dancing by bringing home a rainbow baby?

The Weight of It All

Currently the rest of the family is at church and I am home alone, having fallen ill last night. This is, I think, a great blessing for certain members of our congregation because if ONE MORE PERSON comes up to me and tells me that our latest misfortune is all part of God's Beautiful Plan and that He Really Loves Us, that person had better run away FAST.



We are now struggling under the strain of five major problems, any one of which is enough to put immense strain on a marriage and family. We of course have them all at once, and each problem added to the load not only adds its own weight, but impacts all the other problems so as to make them even more burdensome and difficult to resolve. All of these problems are interrelated - to solve just one of them would set off a positive chain reaction and bring our family some desperately needed relief. But instead, more keeps getting added on, making it even more difficult to resolve anything.

Hubby is now unemployed. We have no income or insurance. To add insult to serious injury, it remains unclear exactly why he was fired, as he's never committed what any sane professional would consider a firable offense. I won't go into the list of petty offenses he's been accused of, but they're laughable! All we know for sure is that his boss is a jerk of the highest order and although it's good for hubby to be out of that toxic environment, he needs another job to go to! We had high hopes right up until Friday that it wouldn't come to this. It seemed plausible even in the midst of this major recession that hubby could transition into another job within the company - it's gigantic and he has lots of connections. But now that he's been fired and is no longer an insider in the company it's all a lot more complicated.

On top of that, we were just six weeks away from being able to try IVF and there's no way to do it without income and insurance. Has anyone out there been desperate and insane enough to do IVF while on unemployment and COBRA insurance?

Although IVF may not result in a baby, trying it would mean being able to say "We tried everything we could". It would mean being able to put the issue of infertility aside because there's just nowhere else to go with it. And even though I know the pain will never really go away, it would be easier to bear without "what ifs" and regrets that we didn't go all the way. We have only six months left to make it happen before I turn 35, after which it gets a lot more expensive and success rates decline sharply.

The lack of insurance means we likewise cannot deal with my recurrent cysts and pain problems - if we could figure that out I suspect we may get at that darn infertility problem, too! Being in pain so much of the time makes me depressed, irritable, impatient, and unable to think clearly. I simply can't function in a normal way, which makes me feel like a horrible failure as a wife and mother, which in turn makes me even more depressed.

And of course there are other big problems not mentioned here, besides the normal every day stuff. You can just imagine what a fun couple hubby and I are right now. The passion. The romance. Not. We've weathered storms together before, but how can we ever survive and rebuild ourselves when they're this bad, this long, and this frequent? I love hubby and I know he loves me, but we need something good to happen for us right now.

A New Clinic. Maybe.

Yesterday was the consult at the new clinic we'd go to if we get to try IVF, which can only happen if we know we'll have insurance going forward. Interview #1 did not result in a job offer for hubby and he hasn't heard back on Interview #2 yet. We're hopeful, but there is nothing else on the horizon if this one's also a "no". Meanwhile, hubby continues to go into a hostile environment at work every day since his boss is STILL not being clear about when he's out of the current job. It's a genuinely bizarre situation. Friends and family keep telling us they've never heard of anything like it. I tell them we specialize in things you've never heard of before.

So anyways, this clinic (which I will refer to as Clinic 2) was a radically different environment than the clinic we went to previously (Clinic 1). Clinic 1 recently relocated to fancy new digs and Clinic 2 appears very old and run-down. Clinic 1 plays comforting Muzak in the waiting room; at Clinic 2 our nervousness was allayed by the soothing strains of "Play that Funky Music White Boy".
However, Clinic 2 does feature some big financial advantages: the cost sharing program is $1000 cheaper than Clinic 1 AND they'll bill our insurance (we still have $4K in coverage), which is expressly forbidden by Clinic 1's program. Result: Total savings of up to $5K. Also Clinic 2 covers ICSI and cryopreservation in the package cost, while Clinic 1 does not. Success rates are similar at both clinics.

Great. Wonderful. And depressingly pointless unless the job drama is resolved expeditiously. For now, we're just trying not to buckle under the stress of it all. At least we know hubby has a job for today (we're well aware that many don't) and we still have our daily bread:

A dear friend recently sent me these matryoshka doll measuring cups. Aren't they cute? They're a fun reminder of the adventures we had together as teachers in Russia. Thanks, Lins!

Trying to Get Our Ducks in a Row

For the longest time I have been either immersed in infertility treatment or sidelined by months-long cyst-induced bouts of pain. I am quite enjoying not being in either stressful situation at the moment, but only because as I write this I am still hopeful it's not officially The End for us. We're trying to get our ducks in a row.

Next week hubby has two (yes TWO!) interviews for jobs within his company. We just have to hope his current boss doesn't undermine it. This guy, who I may have mentioned is a spectacular jerk, returns from China tomorrow and will presumably tell hubby exactly when he is out of his current job.

Also next week we have a consult at the clinic we'll transfer to if IVF becomes a reality for us. In the meantime, I've set a few goals to help get me through the Wait of Indeterminate Length:

1) Run the equivalent of a marathon in one week's time, with the last 10 miles in one day to beat last summer's record of 9 miles in a day. This will be tough considering I only logged 14 miles this week.

2) Get my house in order. This means cleaning everything and organizing everything. That way it's ready in case we have to move. Or better yet, if we stay I can then be a slacker for awhile with the housekeeping.

3) Prepare home-school materials for my kids for this summer. Yes, I'm a mean mom. But since my kids have the incredible opportunity to be in a Chinese Immersion program at our public school (another reason I don't want to move now!) that means I'm responsible for teaching them English reading, spelling, grammar, and vocabulary.

These projects and the bliss of being pain-free almost all the time (yay!) will hopefully keep me sane for the near future, even with this super-high level of stress.

Before signing off I'd like to thank everyone who has followed along on this bumpy ride (lurkers, too!). Thanks for your kind comments, encouragement, for sharing your stories, and for listening when no one else seemed willing to hear. Hope you all have a wonderful weekend! Here's what I've been working on for Easter:

Beware the Ides of March

There are still four days left of The Wait as I finish up my last cycle on Follistim. I fully expect the results to be negative thanks to the relentless attack endo has been waging for months near my one and only tube and ovary. That's the only place that ever hurts, and boy does it hurt. Also the sperm count was pretty rotten at IUI this time around. A few hours after the IUI, during church, I could swear I felt an egg popping out! So I seduced hubby there in the pew. We ditched the kids at church and I made him take me home immediately to make another (hopefully better) deposit before he had to rush back to church to teach a lesson. I'm a desperate woman.

I've been passing the time researching IVF and hoping to find out before Beta Day whether it's a viable option for us. I needed to know if bad news on Friday means The End For Good or just The End For Now. After much research and many phone calls, I was shocked - shocked, I tell you - to get accepted for the Cost Sharing Program at my clinic despite my losses and one ovary. Things were moving along at breathtaking speed so that we could get started next month! This might really work! Of course it might also be an even more painful and expensive way to fail, but I was cautiously optimistic. Recent years have turned me into a big pessimist and it felt good to have a little optimism, even just the small cautious type. Yes, I dared feel a little bit happy about the possibility of Something Good finally happening. That, of course, is the cue for Something Terrible to occur.

Hubby got fired! At this point, it is unclear exactly why he's fired or exactly when he's cut off as he's expected to work until the replacement is brought on. Since he works for a very large corporation, there's some hope (though not a whole lot in this economy) of finding work within the company by using the many contacts he's been cultivating in anticipation of this very event. But for now we are in survival mode (wait - isn't that where we've been for years already?!) unable to plan on ANYTHING - not income, not insurance, not spring break in exotic Illinois, and certainly not stressful and expensive IVF. No future plans of any kind. Now there's even more stress piled on when we already felt stressed nearly to the breaking point.

On second thought, I don't think I'm a pessimist at all. I'm just a realist - and life really, really sucks right now. Oh, things could be worse. We know that because they've been getting progressively worse for years now. But . . . at least we have some savings and aren't tethered to a house, which we're absolutely giddy about. And we're all reasonably healthy with no deadly diseases - just endo which sometimes makes me wish I were dead. See, I can look on the bright side. I'm a pessimistically optimistic realist.

A Tangled Web

Oh what a tangled web we weave
When we are desperate to conceive

Apologies to Sir Walter Scott. So, the consult with the RE was AWFUL. Q was confused about where to meet and missed the whole thing. He paid dearly for it (sorry Q!).

Usually doctors are the only ones who give us any hope, but this one didn't seem too hopeful and was clearly frustrated with my indecisiveness regarding our options. Apparently she thinks life-or-death guesses should be easy. She's ok with us trying Clomid one more time if we want to, but we don't really want to. Instead, she said to try very low-dose injectibles next time (Follistim). She's also fine with us skipping to IVF. Much as I wish IVF were a viable option for us, Q and I agree that a $12,000+ a pop gamble is just too much given my very poor track record even when I do get pregnant. Also, having only one ovary makes it a risky gamble even without the loss issues.

Guess I'll try Follistim. Why not? We have a little $ left in the insurance pot, might as well use it up and hope I have a shred of fecundity left before my lady parts self-destruct.

And speaking of self-destruction, it seems to be continuing even on the pill. The pain is making me lose my mind. Endo is devastating not just because of the physical pain, but also because of the hopes it destroys. For now I'm relying constantly on my Instruments of Torture Reduction - heating pad, hand warmers for portable heat, cold packs, tennis ball, pain killers, and best of all, the portable rechargeable massager that I lay on my belly at night.


There have been so many horrible decisions to make over the last few years, and each of them leads not to a resolution, but to yet another horrible decision to make. There is so much at stake. Each time we're forced to make a choice the situation is more complex and the process more tortuous. There are so many factors to consider : medical advice, physical and mental limitations, financial barriers, religious issues, ethical questions, and so much more.

Someday, somehow, there will be a resolution of some kind, though I know I'll never end up where I wanted to be or with the family I wanted to have. But I want to know that at least I tried everything I could, instead of living with regrets and "what if" for the rest of my life.

An Adventure on the Black Market

Oh, what a depressing week this has been. I'm very sorry for hubby and the kids - I can hardly function at all! I was already feeling awful over my brother's recent death, and then I got (surprise!) a negative pregnancy test on Monday. That was try #4 of Clomid and I know this time the IUIs were well-timed. We did two this time just to make sure, so that's several hundred dollars extra down the drain. Our lifetime limit of insurance coverage for infertility treatment is disappearing rapidly, with nothing to show for it.

My RE (that's reproductive endocrinologist, for the uninitiated) has OK'd continued Clomid cycles, but I am extremely pessimistic about my chances despite the positive pregnancy test I got on the first Clomid cycle. Clomid does seem to be making my endometriosis flare up, and what has me especially worried is the timing of it. I get a painful endo flare-up five to seven days BEFORE my period. For the 2-3 days before my period and during the period itself I have almost no pain at all. Besides being strange (endo pain is typically during and maybe just before the period, due to bleeding endo lesions) I am very concerned about how this impacts my chances.

Yesterday was cycle day one, and since I can't have a consult with my RE until the end of October (grrrr!) I am forced to choose from four unattractive options with, as usual, absolutely no sound medical advice or inspiration to help me:

1) Do nothing and risk getting a functional cyst. This has happened quite routinely over the last couple of years whenever I try to have a "natural" (meaning drug-free) cycle. These cysts are painful and can take a long time to go away. Also if they get really big I run the risk of more surgery and even loss of my sole ovary. Not attractive.

2) Go on the Pill. Again! Sit around in Waiting Mode. Again! Makes me want to scream. Not again.

3) Do another Clomid cycle. This would deplete our funds by $1000-$1500 and I have little expectation that it would work. But there's always that little glimmer of hope that's hard to turn my back on, especially since I'm turning 34 (!!) next month and the clock is ticking REALLY LOUD. If only I could talk to the RE about any possibility of dealing with the endo flare-up. Maybe there's some way short of surgery that my odds can be improved on Clomid, but until I find out if that's possible, it's hard to burn through that much money.

4) Do an almost natural cycle, meaning no Clomid, no ultrasounds, and no IUI. Just Ovidrel to hopefully prevent my one hopefully normal follicle from becoming a cyst. I think this will work because on "natural" cycles I get no LH surge but often get a cyst. I'm hoping Ovidrel = LH surge and normal ovulation = no cyst. We'll see if a Clomid-free cycle could also mean a less dramatic endo flare-up. Or maybe no flare-up at all. Maybe we could even get pregnant by taking a step back on infertility drugs! Maybe we could get pregnant by [gasp] having sex! Maybe I'm delusional and have lost my mind at last!

You'll probably think so after you hear the rest of the plan. So ...the infertility clinic is willing to have me do just the Ovidrel, but only if I go in for cycle monitoring as usual. We'd still be spending $800 or more but with virtually no chance of getting pregnant. Doesn't strike me as an attractive option. Things were looking pretty bleak, but then I peeked into the dark underworld of fertility meds, the Black Market, and found someone very nearby willing to sell me a leftover Ovidrel syringe for $30! I met up with her today and now I have Ovidrel in my fridge. Here's hoping that she and I both get lucky by stepping back on the infertility treatment.


That's the plan for passing the time between now and the end of October when we can talk with the RE about our options. In the meantime, we figure we may as well start the adoption paperwork. Hubby's in charge of it because he can.  My contribution has been stirrups and syringes, so I feel that he's getting off easy.

After looking at the adoption information again, I must admit that stabbing myself with dozens and dozens of needles does begin to look attractive in comparison. This strikes me as very odd. Guess I've grown accustomed to needles, surgery, spending a good deal of time in stirrups, and having foreign objects shoved up me. With IVF, though, it's the financial risk and the risk of another crushing loss that scares me.