Negative is as negative does

In the year's least hotly anticipated news, my official beta hCG test was negative for pregnancy. I don't know the exact value. I was kind of hoping for a nice fat 0.0 so I could make an Animal House joke, but I don't have the energy anyway.

As I wrote in my last post, it was pretty obvious what was coming since I got my period on Sunday. There was no ambiguity about it. It wasn't like there was light spotting and oh maybe things are still okay and I should keep up this insane farce that we were going to be taking home a sibling for our son in late August. I. Got. My. Period. Five days (calendar days, not business days or days spent crossing time zones or whatever, actual 24-hour days as determined by the rotation of the Earth) after my transfer. While I was having intramuscular injections of progesterone in oil, using Crinone gel, and taking oral estrogen. This doesn't appear to be a commonplace occurrence. This morning I tried googling the phrase "5dp5dt bleeding heavily" from a computer I rarely use and do you know which blog came up as the second hit? MINE! Maybe other people have experienced it and didn't write about it, or maybe the stories with negative outcomes aren't the ones that people want to read so they don't get a lot of prominence in the search algorithm, but when you look to the Internet for advice and its best suggestion is to read the post you yourself wrote earlier this week? Not a good sign.

Something went badly wrong with this FET cycle. (Something way above and beyond the interactions I had with my clinic, which are a separate topic and are still being addressed professionally.) In an alternate universe my RE and I would have a conversation to figure out what happened scientifically and what our next steps are, but in this one, I have decided to cease all treatment and stop seeking care for infertility indefinitely. This process has brought me the greatest gift of my life - our son - and it also did a pretty damn good job of destroying everything else. I think back on the person I was in September 2011 and I barely recognize her.

Do I think "indefinitely" really means forever? No. I think it is likely that I will embark on another IVF cycle at some date in the future, but I have no idea when that will be. In case you stumble upon this blog between now and then, and you start wondering "hey, what ever happened to her?" I will tell you this: I'm fine. I'm not great, but I'm okay. My record across two IVF cycles performed with my own 28-year-old eggs, despite advanced endometriosis and blocked tubes, was good - I took home a beautiful baby boy. If that's your diagnosis and you want to have a child, then I hope you read my story and feel optimistic about your own chances. If you found this site by looking up some other combination of words - maybe "infertility anger" or "egg retrieval traumatic" - then the only thing I can offer you is the knowledge that you are not alone in your feelings and experiences.

To my readers in the past, present, and future: thank you for your time, and good luck. I wish you all the best.

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.

I'm fine

Just want to keep all 7 of my readers informed: the initial finding from the MRI is that I have a peritoneal inclusion cyst. My CA-125 number was also well within the normal range, so although I'm still planning to keep my appointment with the oncologist just in case, all indications are that I do not have cancer. Giving thanks, indeed.

Monday morning was DEFINITELY a relief

The only weekend that comes close to this one in terms of angst, lack of sleep, and general crappiness was January 7-8, 2012. Once again, 4 AM seems to be the magic hour; it's when I finally went to sleep on Saturday ("Friday night") and it's when I got up this morning. HAPPY MONDAY, EVERYBODY! UP AND AT 'EM!

The weekend was made even better by the fact that my husband had a minor car accident on Saturday. Thankfully he is fine, but it could have been so much worse. I can't even think about it without the nausea starting to build, so that's really all I can say.

My MRI is this afternoon and I'm already strategizing how to get my results right away, rather than wait for my appointment with the oncologist next week. I think I'm going to press for an OB-Gyn to go over them with me before I leave their office complex… there's no way I'm going to have the uncertainty of this hanging over my head over the entire Thanksgiving holiday. I'll be really nice about it but I'm not leaving there without an answer, even a partial one. I have this giant work event tonight (perfect timing, as ever) so I can't fall apart no matter what happens. Busy day… I'm off to get a bagel.