I cancelled my transfer, but then I did it anyway, and things do NOT look good

Okay. Lots has happened since my last post - too much to go through in detail, plus it basically all sucks so there's no point in moseying down memory lane. Here are the bullet points:

- My transfer was set to take place on Monday, December 9. I needed to work out a conflict with my work that day and tried to reach the nice nurse I've been working with, but instead talked with her colleague who I barely knew. The conversation went about as badly as it could have gone. I was hysterical and my husband had to pick me up from work, then I went home and sobbed for the next ~16 hours. I couldn't calm myself down. In desperation, around noon the next day, my husband actually called my parents and they dropped what they were doing to drive to our house and try to help me somehow. I ended up taking the 2nd Ativan of my entire life (the first was right before my egg retrieval, funnily enough) and ate some macaroni and cheese with my mom on our couch while she tried to console me, and finally I fell asleep for about 4 hours. It was one of the worst experiences of my entire life, but I mean, this whole process has been characterized by bad experiences so I feel like saying to that weekend oh, get in line.

- What happened during that conversation with the nurse to upset me so much? I apologize that I am unable to provide any details. That's because things finally got so bad with my clinic that I'm working with patient relations for their larger practice. The next (and final) time I speak with anyone from that office will be with a mediator present. However, I don't know when that will be, because the patient relations rep I spoke with said that she had to check with her supervisor and risk management before she gets back to me. Risk management… I wonder what I'm getting myself into.

- By Sunday afternoon, after I had told my parents the whole story of this cycle (they had no idea it was  even happening) and after lots of discussion with my husband, I made the extraordinarily difficult decision to cancel the transfer that was now tentatively scheduled for Tuesday AM. We were prepared to just walk away from the cycle altogether. I wrote to my clinic asking them to remove me from the schedule and everything. But…

- On Monday, I spoke with two additional physicians who urged me to go through with the transfer. One made kind of a deus ex machina maneuver and got us back on the schedule for Tuesday. Harry came with me to the appointment and mercifully I didn't have to interact with anyone who had been involved in my care to date. I shudder to think what the rest of the staff were told about me but we just stared straight ahead as we walked through the waiting room, talked with everyone as little as possible, and got out of there as soon as it was over. From a medical standpoint, the transfer itself was pretty straightforward. I did feel anxious to be back in that room again but I also felt so much anger by that point that the fear was pretty drowned out by the adrenaline coursing through my bloodstream.

- I felt some light cramping on Tuesday afternoon and some heavy cramps on Wednesday. I even had some very minimal spotting on Wednesday evening and Thursday that I thought might be implantation bleeding. However, this morning at 5dp5dt, I had a completely negative pregnancy test. Before you start thinking "wait, this sounds promising, don't give up hope yet!" I will also tell you that this afternoon I started bleeding heavily. The only conclusion I can draw is that the timing of my transfer got so screwed up that somehow I was insufficiently suppressed (maybe? I really have no idea) and we transferred the embryo into a uterus that was several days past when it could receive it. But yeah, I have my period, despite the progesterone-in-oil shots (which really do suck by the way, they are indeed very painful and upsetting) which I thought would keep the heavy bleeding at bay until my beta hCG blood test on Friday.

- This is the sort of thing that I would love to ask my clinic about, but I'm pretty definitively clinic-less since I have officially terminated my professional relationship with them. (Taylor Swift said it best.) I am thinking I'm going to ask my regular OB-Gyn if he would be willing to put in an order for a beta test to confirm the failure of this cycle, after which I will stop all medications. Other than that I don't have a plan. I'm mourning the loss of this potential little life, obviously. Our son was actually not the embryo that the clinic intended to transfer back in January 2012 - they were going to transfer embryo #1 but then #8 started hatching and they changed their plans at the last minute - and I was haunted by the thought of that switch. In a single moment, their fates changed and one went into the freezer and one went into my uterus and grew into a baby. Now, two years later, the unlucky embryo is disintegrating within me and the lucky embryo is upstairs sleeping peacefully in his crib. Oh, G-d, what have I done.

Oncologist appointment

I met with the gyn oncologist yesterday. She agrees with the preliminary conclusion that I do not have cancer, which is fantastic. She is happy to do another scan in 3 months or so to check on the cyst, but unless I develop additional symptoms, she is not inclined to treat it with additional surgery. It's about the best outcome you can hope for when you head into an oncology waiting room.

However, as usual when doctors think they're delivering good news to me, I was a complete mess and spent a good chunk of time sobbing afterwards. Harry and I spent a bunch of time before this appointment talking about how one major source of anxiety for both of us is the lack of a plan going forward - we got this diagnosis of endometriosis and infertility in rather dramatic fashion, embarked on a traumatic IVF cycle and pregnancy right away, and our first year of parenthood has been punctuated by additional health crises like the one that had brought us to the oncologist's office. A huge amount of my unhappiness rests on the fact that I woke up from my surgery with an array of bad options to manage my endometriosis between now and menopause:
1. take the birth control pill continuously
2. take other hormones that would accomplish the same thing as the pill (probably Lupron Depot)
3. get pregnant as soon as possible through IVF, then breastfeed for an extended period of time
4. monitor me with routine transvaginal ultrasounds to see how quickly the endometriomas would recur to the point where I needed surgery again

Here's how I viewed those options:
1. feel generally terrible and pessimistic about life
2. feel generally terrible and pessimistic about life, with the likely addition of some unpleasant physical side effects
3. endure awful things happening to my body during IVF, pregnancy, and birth, plus I have to take care of an infant during the lowest time of my entire life, followed by the inevitable selection of options 1, 2, or another attempt at 3
4. live with anxiety between each uncomfortable scan, followed by the inevitable selection of options 1, 2, or 3 (plus or minus another surgery)

I was completely unprepared for the tidal wave of grief and anger that came over me after my diagnosis, as I have previously described. But what's amazing is that that grief and anger is as palpable today as it was two years ago, and I attribute that to the fact that I'm still at square one when managing the future of my body using the menu above... plus I'm grappling with the utterly terrible realization that the doctors and nurses who I thought would support me during this process are actually (to varying degrees, but still) indifferent to my suffering. Naively, I thought that one positive outcome of meeting with a gyn oncologist - whose practice does include patients with benign but complicated conditions including endometriosis - was that I might finally have found the person who was going to say to me "This is a very tough diagnosis, and we're sorry we don't have better news for you. But we are here to help you - please tell us what we can do." The doctor I saw was very friendly, but I suspect that when you spend your days telling women that they have cancer, it is completely baffling when the promising young patient in your office is visibly unhappy when you say she does not have cancer after all and she can proceed in her efforts to get pregnant.

I have to wrap this up because - no kidding - I have to go to the pharmacy to get the progesterone in oil shots that I swore I would never take. (Turns out that my doctor and I may have both had incomplete information when he told me in August that they would prescribe Crinone for a frozen embryo transfer cycle.) This is all I'm going to say: in case it wasn't obvious already, I am f*cking miserable. The last two years have been the most difficult of my life and I estimate I have another 20 years of the same before my body enters menopause. I am not going to survive that. I don't know how I can live one more second in this body, I don't know what I did to deserve this diagnosis, and I really don't know why no one wants to help me. If you resent me for saying this, well, the good news is that you couldn't possibly hate me more than I hate myself.

Trauma, Recovery, and IVF

When I was sixteen, I went through a tough event at high school. I won't get into the details here except to say that it taught me one important life lesson. That lesson was that there is no cavalry coming. No one is going to save you. You are responsible for saving yourself. Bad things happen and even if you played no role in causing them, that doesn't matter. There won't always be justice and the people you trust to protect you won't or can't help you when you need them. As Blazing Saddles illustrates, son, you're on your own.

That traumatic event is connected to my recent departure from the blogosphere. (And let's just pause for a second here to acknowledge how very small my corner of the blogging world is: I do have a handful of regular readers, but most people who visit my blog are searching for pictures of my pregnancy tests so they can compare them to their own; sorry, guys, for letting you all down. Hope you found someone else's urine to look at.) It's connected because in both cases I felt completely blindsided by a tremendous life change, I looked to people in positions of authority for help and comfort and didn't find it, and it took a very long time for me to recover psychologically. That's how I feel about my infertility diagnosis and treatment experience, from the distance of almost two years: it was a trauma. A huge, life-altering trauma that still has me floundering.

To bring you up to speed, here's a brief synopsis of events that have taken place since O's birth last fall:

October: Have baby. Labor and delivery go pretty smoothly and we are blessed with a healthy, adorable, bouncing baby boy. I notice that I have a few weirdly obsessive nights where I keep thinking about the birth, and it takes much longer to feel physically "recovered" than my doctors predicted, but I move on to focusing much more on my delicious little newborn than my IVF cycle, my pregnancy, or my delivery.

December: 6-week followup appointment with OB. Have promising ultrasound showing no major endometriosis-related problems, decide to start the mini-pill, generally feel optimistic about life.

January: Go back to work. O starts daycare, immediately gets a series of minor colds and coughs, and everyone's sleep and commuting schedules suffer. Still, as the days get longer and the sleeping arrangements get back on track throughout the spring, I continue to feel pretty great.

April: Find out that the events of the past year and a half have had external consequences that I genuinely didn't see coming. Memories and anxiety that had previously been held at bay come flooding back. Another ultrasound shows that my endometriosis is about as quiet as I could hope, but it doesn't matter, because everything else is completely falling apart.

June: Find out that our current insurance plan - the one that covers four cycles of IVF at one clinic and one clinic only - will be ending in June 2014. Would we like to have another child between now and then?

July: After a tremendous amount of discussion, agree to see a therapist. Spend 45 minutes of a 60 minute appointment grilling her on her treatment style, philosophy, approach to patient care, and make her agree to send me a copy of her notes. Tell her the digest version of what's happened in my life since 2010 and she makes some sympathetic noises. Three weeks later she actually does send me the notes, which thankfully are unobjectionable but are also completely unhelpful. Decide not to return.

August: Go for appointments at two different fertility clinics. Clinic 1 is where we went for the fresh cycle that created O and where I left my egg retrieval feeling utterly destroyed (a feeling I re-experience daily and which generally leaves me sobbing and gasping for air, but which seems weirdly right when we actually have to walk into their building again.) Clinic 2 is brand new in every sense of the word - their offices are still partially under construction, even.

Here's what we learned at Clinic 1: they consider me a success story, what with my single cycle of IVF and my single embryo transfer and my term birth and my (if I do say so myself) utterly gorgeous son. The conversation takes a bit of a turn when I mention that I think about my egg retrieval all the time, I'm completely haunted by the memory of it, I'm generally miserable, etc. etc. Our RE is sympathetic about my bad experience and understands why I would choose to go elsewhere for further treatment, but it's clear that the financial implications of my insurance coverage are not his area of expertise. We talk about how to transfer embryos to another clinic if need be. We also talk about what would be involved if I chose to somehow get past my earlier experience and have a Frozen Embryo Transfer (FET) cycle with them. It's nowhere near as invasive as what I went through before, obviously, and they even say they prescribe Crinone for progesterone support so I wouldn't have to do those vile progesterone-in-oil shots. And to his eternal credit, right before the end of the appointment, our RE does admit that "we tried not to hurt you, but it sounds like we did hurt you a little bit, and we're sorry about that." I leave feeling like we repaired the relationship quite a bit, but part of me wished that I had abandoned RationalCharlotte at the door and taken advantage of the opportunity to scream and curse at someone who was "responsible" for all of my unhappiness. Except I didn't, because he isn't. And while I was sitting in his office and during the weeks following our visit, my anxiety level has continued to be through the roof - especially when I think about even stepping foot in that building again.

And here's what we learned at Clinic 2: they will knock me out during egg retrieval if it ever comes to that (which it probably wouldn't, because that would be very tough for us to afford just paying cash, but it's still the first question I asked.) They're willing to accept a transfer of our frozen embryos and work with us on a FET. They too are sympathetic about how upset I've been - maybe I'd like to try some valium before a procedure, or investigate acupuncture, or join them for Fertility Yoga on Tuesday nights? The price tag for a FET without insurance coverage will be steep but not prohibitive. However, they do use progesterone-in-oil shots, and the minute I hear this the whole world seems to dim for a moment. Those needles are long and thick, injecting them into my ass is humiliating, the process as well as the aftermath is painful, and my heart rate skyrockets when I so much as think about the shots. And even in a new space, with new faces, the mere discussion of what's involved in infertility treatment is enough to make me feel completely terrible.

So, what do I do? Start blogging again, it seems. Other than that I have no idea.