What a (little) difference a year makes

A year ago yesterday we went in for what would ultimately be our last consult with RE#1, though we didn’t know it at the time.  I was just barely pregnant (beta of 9.6 at 14dpo) and knew yet another cycle had failed. This would be my forgotten miscarriage, the one I tend to leave out of my medical history and the one whose due date I usually have to look up to remember.  When you’re only chemically pregnant for 48 hours, it’s hard to get those facts indelibly saved to memory.

It was also the day we decided to do IVF for the first time.  A year, a miscarriage, and 9 months of birth control later, we’ve still never come close to doing IVF.  I’m having a little trouble accepting that today.  The solid hour I spent in the MRI tunnel this morning isn’t helping any either.

The thing no one really recognizes about infertility treatments until they are knee deep in them is that treatment protocols are rarely dictated by what’s medically appropriate, what is most likely to achieve pregnancy, or what is least likely to have negative side effects.  First and foremost, infertility treatments are guided by one’s health insurance policy and bank account balance.  In the case of our old insurance this meant a number of things.  First, I could use the oral ovulation medication Clomid every day for ten years and they wouldn’t bat an eye.  Never mind the fact that all it would do was aggravate my endometriosis, that it never caused me to ovulate within a “normal” timeframe, that I always had abysmal progesterone while on it, and that the hot flashes, headaches, and mood swings it caused me made me long for the simplicity of menopause.  As RE#1 said, “It’s definitely not the best treatment for you, but I guess we’ll try it since it’s inexpensive.”  So, try we did.  And, fail we did.  Two of my three miscarriages have been the result of Clomid cycles.

Aside from the fact that our insurance covered Clomid, it was also our longtime go-to option because of this lovely little thing I like to call the “asinine catch-22.”  When doing everything up to and including Clomid with timed intercourse, my insurance covered all consults, ultrasounds, blood work, and surgeries that happened in the course of my infertility workup.  As long as you were only using Clomid and trying to get sperm to meet egg the old fashioned way, you were still considered in the “diagnostic” phase of infertility.  Two years of diagnostics?  No problem!

The moment we skipped to harder drugs (injectable stimulation meds) or moved to assisted reproductive technologies (IUI or IVF) my insurance would automatically assign me the classification of “infertile.”  From that point on, all future consults, medications, ultrasounds, bloodwork, and surgeries would be subject to an infertility rider and not my normal coverage policies.  Essentially, from the moment I took that first injection, I’d pass a point of no return.  For the rest of my lifetime under that policy all non-pregnancy ultrasounds, all RE visits, all blood work, and all surgeries (whether coinciding with fertility treatment or not), would come out of a $10,000 lifetime limit for which I was subject to 25% coinsurance (insurance pays 75% of charge, I pay 25%).  That’s scary enough to think about in the first place, but when you factor endometriosis into the equation and the very real need for future laparoscopies to control the spread of endometriosis, it becomes downright terrifying.  And, once we passed the point of no return there was no coming back.  No returning to simple sex and Clomid, no “hey, just kidding, please let me have another insurance-paid-for lap,” and no routine bloodwork.  So, my insurer, not my doctor, got to tell me what treatments I was allowed to try.

But, when it became obvious Clomid was most certainly not going to be our miracle drug, we had a difficult choice to make.  Injectables stood a good chance of working, but at about $1,500 for just the medication, $100 per ultrasound (and I averaged 5 ultrasounds per cycle on Clomid due to my late ovulation), and several hundred dollars a pop for blood draws, it was a pretty expensive game of “hope this works.”  Given my PCOS, RE#1 was also fairly concerned I would overrespond on the injectable stimulation drugs and produce too many eggy targets for Mr. But IF’s boys.  This would mean canceling the cycle.  Canceling after paying for the meds, after paying for the ultrasounds, after all the blood work.  The only other alternative would be moving forward despite the over-response and seriously risking a high-order multiple pregnancy.  The thing with injectable stimulation medications is you really don’t know how you will respond until after you’ve tried them.  Injectables with timed intercourse was a pretty expensive gamble with the real possibility of a canceled cycle.  So, what was left?

Ultimately, we opted to go with IVF.  Sure, the cost was much higher, but the control was too.  Over-response wouldn’t spell doom for the cycle, and, in the unlikely event that I under-responded we could still cancel the egg retrieval and embryo transfer (the most expensive procedures) and resort to timed intercourse.  The reverse was not true, however.  If we opted for timed intercourse and I over-responded my insurance did not permit us to convert a timed intercourse cycle to an IVF cycle.  IVF required pre-authorization by the fertility department at my insurer and that paperwork took too long to be completed to allow for conversion to IVF.  On May 5, 2012, we decided we’d go for broke.  Shoot the majority of our infertility benefits on one attempt at IVF and hope for the best.  I did all the additional pre-screening required (carrier testing for cystic fibrosis, nutrition evaluation and food logs, etc.), started acupuncture, began birth control pills, paid a non-refundable “cycle fee” of $300, got my insurance pre-authorization, and waited for RE#1’s IVF coordinator to call.  I waited, and waited, and waited.  Finally, my IVF cycle was pre-approved by my insurance on May 29, coincidentally the same day I was two states away interviewing for what would ultimately become my new job.  With pre-approval secured and a month of birth control suppression under my belt I was certain I’d be starting my cycle any day.  Then the IVF coordinator, a woman I’m thoroughly convinced is both the nastiest and stupidest woman I’ve ever met, called to schedule my cycle.  On May 29 she scheduled my cycle to begin on July 28.  I was devastated.  I asked why I had to wait and she said “our June and early July cycles are full, this is the best I can do.”  I crawled into my hole and settled in for a long wait.

On June 12 I received an email from the IVF coordinator informing me that the RE’s negotiated rates with my insurance for IVF cycles was doubling beginning July 1.  At our consult on May 5 we had been told our $10,000 lifetime max typically stretched to include the bulk of two fresh IVF cycles.  (Medications came from a separate $10,000 pot which helped a ton, and we anticipated I’d need low doses of meds due to my PCOS.)  Now, with the new negotiated rates, my insurance would not even cover one fresh cycle in its entirety.  I was furious.  It became very clear to me why, exactly, I’d been bumped from the June cycles — had I cycled in June the RE’s office would have made half as much off of my case.  I retired to my special “phone calling room with a door” at work (also known as our broom closet) and proceeding to scream and cry at every individual that worked at my RE.  I ultimately told them to shove their practice, shove their IVF, and shove their horrid IVF coordinator out a window.  (And, that’s probably being a little gentler than I actually was.)

On Friday, June 15 we canceled our IVF and separated all ties with our first RE.

On Monday, June 18 I was offered a new job in an infertility mandate state at nearly twice my old salary, 10 times the respect and responsibility, and 100 times the potential for upward mobility.  With no potential for fertility treatments in our future, I jumped.  I’m typing this from my gorgeous new (old) house, in my sleepy friendly village, a few blocks from my amazing new workplace.  In many regards, life couldn’t be better.

Except for one thing – I still regularly wonder what would have happened had we gone through with that IVF.  I love my new home, my new job, my new friends, my new colleagues, but I’d love being the mother to the two week old that I’d have from that IVF right now even more.  But, we can’t spend our lives wondering, I suppose.  Or can we?

One of the primary questions you confront when battling infertility is whether you should live for the now or live for the what if.  When I opted to accept a new job and move, I did a little of both.  Most certainly my “now” is better.  Our social life, home life, work lives, and relationship our stronger here than they were in our old state.  Separating myself from the physical reminders of so many painful memories – my first miscarriage, my Hashi’s diagnosis, the room I’d always planned would be our nursery – has been welcome.

But, a small part of me still admits that the “what if” factored into the decision as well.  Sure, the path to pregnancy here wouldn’t be as immediate as it might have been had we stayed behind and bounced to the competing RE practice across the medical complex parking lot from RE#1, but here I would have a slightly more infertility friendly state on my side.  Unlike our previous insurance, this state mandates that infertility treatments up to, but excluding, IVF must be treated by the insurer as if they were any other medically necessary treatment.   Our next cycle (should we get the green light to try again from the rheumatologist tomorrow) will involve injectable stimulation meds, an injectable trigger, injectable blood thinners, and injectable progesterone support all for the cost that I routinely paid for Clomid last year.  There is no switch we can trigger to cut off my lifetime supply of benefits and, though it still isn’t entirely in my or my doctor’s hands, some amount of choice has been returned to us from the hands of my insurer.  As an unfortunate trade off, IVF is permanently off the table for us here unless we save up and take the plunge 100% out of pocket.  All visits, tests, procedures, and medications used in conjunction with IVF are specifically excluded in full from my new insurance.  My state mandate still lists IVF as “experimental.”

There’s one final element of our decision to move that I classify as addressing the “what if.”  Should we ever succeed, motherhood here will be incredibly more fulfilling than it would have been there.  Living in modern-day Mayberry – this land with beautiful parks, friendly villagers, devoted schools, and neighbors who don’t own keys to their homes because their front doors have never been locked (NOT an exaggeration, btw) – literally makes my uterus ache with want.  Now that spring is springing I hear the babies on our block giggling and crying through open windows, I see the little ones in the park run in their awkward little goose-steps, and I’m eyeing my next-door neighbor’s suspicious little belly that I fear portends a sibling for 2-year-old T.  And it all smacks of two very different what if’s.  First, the what if that brought us here.  That silent hope that someday I’d be carting our little ones to the weekly farmers’ market in their little red wagon.  Second, and much more common these days, is the what if that may chase us from here in coming years.  What if I’m never able to join in fully in this community?  What if the giggles and strollers and parks and la leche league posters in the coffee shop become too much?  What if this is just another stop in my career, rather than my permanent professional home, because I can’t bear living child-free not-by-choice in Mayberry?  What if, it seems, we made entirely the wrong choice last summer?

A year ago yesterday I was at peace.  For the first time in over a year I had hope.  Tonight, I have a different type of peace.  The peace of a sleeping husband by my side, a lovely kitty at my feet, and a new patio furniture set on our deck.  But, I don’t have hope the same way I did back then.  Another year spent in this infertility demolition derby has left its dents.  I’ll let myself wish.  I’m wishing right now for good news from the rheumatologist tomorrow.  But, wishing is different from hoping.  Wishing is somehow more whimsical, more ethereal.  When one wishes they don’t always expect it to deliver, so the soul is crushed less when it doesn’t.  Hope is for those that desperately want and expect a desired outcome.  I just don’t have the energy to hope anymore.  I left my hope up on the shelf next to my ill-fated IVF.

5 thoughts on “What a (little) difference a year makes

  1. There’s something in the euphemism “child-free” that’s rankling me lately. For people who choose not to have children, it makes sense. But for people like us? People who *want* babies so very badly? We’re childless. Without child. We can try to make it sound less painful with different terminology, but it’s still a lack. A want. An emptiness.

    You also bring up another point about planning for the future. When you don’t know what’s coming around the corner, how can you schedule anything? I’ve had to cancel two trips due to the unpredictability of IF treatments. I’m scared to schedule a vacation this summer for the same reason. I hate putting my life on hold, but when the clock is ticking, how can you sacrifice a single potential cycle?

    Love reading your blog. I’m really glad you started it.

    • I always always feel the need to say “child-free not by choice,” but even that has a sting to it to be sure. I will say, though, that “childfree” is likely more empowering than “childless” as it puts a little more focus on one’s role in making a choice about how they will resolve their infertility. My body makes me childless, my inner strength, deep reflection, and open relationship with my husband may make me childfree (as opposed to looking into fostering, adopting, continuing treatment, stealing a baby from the grocery store, etc.). That all feels awfully new-agey to practical-minded me, but I do think there is something there.

      On your other point, funnily enough my boss asked me yesterday about my summer vacation plans and I quickly replied, “Um, none?” There’s way too much going on in my life right now to even think about adding another thing on top of it. And, it’s been the same for years. I’m too exhausted to have a vacation! 🙂

  2. I really love what bumpy road to baby said. I echo that because it’s better than anything I could have come up with on my own. Thank you for this post. I hope that it gives some people a window into what it’s like to struggle with IF.

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