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.
Friday, December 20, 2013
Sunday, December 15, 2013
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.
- 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.
Wednesday, December 4, 2013
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.
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.
Wednesday, November 27, 2013
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, November 25, 2013
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.
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.
Friday, November 22, 2013
How do you like me now?
I have a complex cyst on my right ovary. Given my age it's very unlikely that it's malignant (really, look it up, I'm not just saying that) but that still means the following:
- I got a blood test for my CA-125 level today!
- I get to have an MRI!
- I get to go meet with a gynecologic oncologist!
No word yet on whether my FET cycle will simply be delayed (if all indications come back that the cyst is benign) or if it will be cancelled altogether (which could happen if the cyst is cancerous, or could happen if the testing to rule out cancer pushes my transfer date back past the embryology lab's annual closure over the Christmas holidays.)
I knew it couldn't possibly be that easy.
- I got a blood test for my CA-125 level today!
- I get to have an MRI!
- I get to go meet with a gynecologic oncologist!
No word yet on whether my FET cycle will simply be delayed (if all indications come back that the cyst is benign) or if it will be cancelled altogether (which could happen if the cyst is cancerous, or could happen if the testing to rule out cancer pushes my transfer date back past the embryology lab's annual closure over the Christmas holidays.)
I knew it couldn't possibly be that easy.
Tuesday, November 19, 2013
Not that I'm complaining
I've tried to write this post several times, but because I keep checking updates from fellow IF blogs before I start typing, I haven't felt able to go through with it. What do I have to complain about, honestly? It takes about five minutes of clicking around to find heartbreaking, awful stories from women who have lost their babies, whose cycles did not work, who are preparing for life without the children they so desperately want. And then there's me, trucking along just fine on my FET cycle, heading home each night to my healthy son and my loving husband, and I have the gall to start moaning about how terrible things are?
Yup. Brace yourself (or stop reading), because I am totally about to complain. But here's the thing! I don't complain to anyone in real life anymore. I don't talk about this cycle with my husband, my parents, my siblings, my friends, my coworkers. As far as they are concerned, there is no cycle happening, no attempt at another pregnancy, everything is just status quo. (I should clarify: my husband knows that this cycle is happening, but that's all. I do not discuss it with him.) It's my first time really experimenting with denial, and I have to say, it's going much better than I expected. A lack of sympathetic faces in my life means that I don't turn to them when things get tough. And if I don't have the option of getting any sympathy - if it simply doesn't exist - well, I find I don't need it as much as I thought I did. And then at least I can cling to that thought - as bad as it gets, as bad as it has been, at least I haven't burdened my loved ones with my inability to cope.
And what is there to cope with, really? Here's a brief summation of what's happened in the last few weeks:
- Right after my SHG, while I was on the antibiotics they prescribed, I got a yeast infection. I tried OTC remedies unsuccessfully for two days before finally procuring some prescription-only Diflucan (don't ask - let's just say that I managed not to hassle my OB or RE.)
- As the yeast infection was coming to an end, I started bleeding heavily. It lasted for three weeks and was similar to my post-partum bleeding, with clots the size of walnuts. I went through a staggering amount of feminine supplies. Another period? Just more irregular bleeding? Who knows!
- I started Lupron injections and got a headache that never really goes away.
- I had a monitoring ultrasound and bloodwork that looked good enough to move on to the next phase of my FET. The 4-cm cyst had gotten a bit smaller, from what I could tell anyway (the OB's office was under strict instructions not to interpret my results and wait for the RE to weigh in, but then all the RE said was to proceed, so I don't really know what's happening with that.)
- I started taking oral Estradiol and injecting myself with Lovenox, since I'm a clot risk after the DVT in 2012. The Lovenox has given me giant, painful bruises on my belly that I believe I have successfully concealed from everyone besides my husband - and even he didn't see them for the first few days, so artful was my dressing/undressing.
None of this is particularly terrible, but yeah, since we're complaining and everything, I will tell you that I've been doing my usual amount of sobbing behind dark glasses. I feel pretty decent about 90% of the time, it's just occasionally that the self-loathing takes over. I start feeling sorry for myself, and then I hate myself even more for wallowing in self-pity, and usually the cycle continues until something external breaks it. Which is often - I'm crazy busy with work, travel, and life in general. That pace is unlikely to slow down for at least another month, which ordinarily would feel daunting but these days is a very welcome distraction.
Next up: at least one more monitoring ultrasound coordinated through my OB's office, another two weeks on medication, and the transfer itself at my RE's office. I am trying to figure out how to casually bring up the topic of the transfer when my nurse calls me in a few days with next steps... for instance, I don't want to put my legs in the stirrups. Could they do the transfer with my feet flat on the table? And what about my RE himself, is it worth even bringing up whether it's possible to have someone else do it? I get the feeling that his embryo transfer technique is probably the best in the practice, and of course I don't want to have to go through this ever again so I want to do everything I can to achieve a pregnancy on the first try, but I am horrified at having to physically put myself in the same position that I was in for my egg retrieval. I don't know. Sometimes I feel angry and empowered, but sometimes I just feel so defeated - sure, go ahead, do whatever you want to my body, it's not like it's worth anything anyway.
And then... then, in December, I'll find out whether this worked. Either way I will have a whole new set of decisions and obsessions. I'll come back here and complain some more, so get psyched!
Yup. Brace yourself (or stop reading), because I am totally about to complain. But here's the thing! I don't complain to anyone in real life anymore. I don't talk about this cycle with my husband, my parents, my siblings, my friends, my coworkers. As far as they are concerned, there is no cycle happening, no attempt at another pregnancy, everything is just status quo. (I should clarify: my husband knows that this cycle is happening, but that's all. I do not discuss it with him.) It's my first time really experimenting with denial, and I have to say, it's going much better than I expected. A lack of sympathetic faces in my life means that I don't turn to them when things get tough. And if I don't have the option of getting any sympathy - if it simply doesn't exist - well, I find I don't need it as much as I thought I did. And then at least I can cling to that thought - as bad as it gets, as bad as it has been, at least I haven't burdened my loved ones with my inability to cope.
And what is there to cope with, really? Here's a brief summation of what's happened in the last few weeks:
- Right after my SHG, while I was on the antibiotics they prescribed, I got a yeast infection. I tried OTC remedies unsuccessfully for two days before finally procuring some prescription-only Diflucan (don't ask - let's just say that I managed not to hassle my OB or RE.)
- As the yeast infection was coming to an end, I started bleeding heavily. It lasted for three weeks and was similar to my post-partum bleeding, with clots the size of walnuts. I went through a staggering amount of feminine supplies. Another period? Just more irregular bleeding? Who knows!
- I started Lupron injections and got a headache that never really goes away.
- I had a monitoring ultrasound and bloodwork that looked good enough to move on to the next phase of my FET. The 4-cm cyst had gotten a bit smaller, from what I could tell anyway (the OB's office was under strict instructions not to interpret my results and wait for the RE to weigh in, but then all the RE said was to proceed, so I don't really know what's happening with that.)
- I started taking oral Estradiol and injecting myself with Lovenox, since I'm a clot risk after the DVT in 2012. The Lovenox has given me giant, painful bruises on my belly that I believe I have successfully concealed from everyone besides my husband - and even he didn't see them for the first few days, so artful was my dressing/undressing.
None of this is particularly terrible, but yeah, since we're complaining and everything, I will tell you that I've been doing my usual amount of sobbing behind dark glasses. I feel pretty decent about 90% of the time, it's just occasionally that the self-loathing takes over. I start feeling sorry for myself, and then I hate myself even more for wallowing in self-pity, and usually the cycle continues until something external breaks it. Which is often - I'm crazy busy with work, travel, and life in general. That pace is unlikely to slow down for at least another month, which ordinarily would feel daunting but these days is a very welcome distraction.
Next up: at least one more monitoring ultrasound coordinated through my OB's office, another two weeks on medication, and the transfer itself at my RE's office. I am trying to figure out how to casually bring up the topic of the transfer when my nurse calls me in a few days with next steps... for instance, I don't want to put my legs in the stirrups. Could they do the transfer with my feet flat on the table? And what about my RE himself, is it worth even bringing up whether it's possible to have someone else do it? I get the feeling that his embryo transfer technique is probably the best in the practice, and of course I don't want to have to go through this ever again so I want to do everything I can to achieve a pregnancy on the first try, but I am horrified at having to physically put myself in the same position that I was in for my egg retrieval. I don't know. Sometimes I feel angry and empowered, but sometimes I just feel so defeated - sure, go ahead, do whatever you want to my body, it's not like it's worth anything anyway.
And then... then, in December, I'll find out whether this worked. Either way I will have a whole new set of decisions and obsessions. I'll come back here and complain some more, so get psyched!
Thursday, October 24, 2013
Someone... was nice to me?
Wait, what? A nurse at my fertility clinic just did something nice for me. Really, truly, she didn't have to do me this favor but she did and I'm all - huh? Stop that! What are you thinking? You're not nice people! You don't care about me! Your colleagues have f*cking told me on multiple occasions that this whole mess was my fault! You're not on my side, you're not my partner or my protector or my advocate, you think I'm an ungrateful patient who complains for no reason!
What happened was this: a few months ago, I was trying desperately to find a way to go back to Clinic 1 for a frozen embryo transfer without, basically, going back to Clinic 1. Even a FET cycle takes a lot of cashish, and I wasn't convinced that I was going to feel any less anxious at Clinic 2, so I tried to see if Clinic 1 would be okay with determining my treatment based on tests (such as the sonohysterogram, ultrasounds, and bloodwork) performed at my OB's office. OB-Gyns also perform SHGs, you know, they aren't the exclusive property of the REs of the world! Clinic 1 was surprisingly okay with it - there were some paperwork hassles that I would have to coordinate, but the only time I would have to see them was for the actual transfer and a consult appointment or two.
This was all back when I thought the only thing determining my family planning efforts was that I would "lose" the 3 remaining IVF cycles covered by my insurance in June 2014. But then! My ovaries woke back up and all of a sudden the schedule was real, with dates circled on the calendar and receptionists who were trying their hardest to fit me in. My SHG back in 2011 at my fertility clinic was a five-minute event so I was expecting to hear something similar from the OB. However, not only did they not have an opening for 3 weeks, they said that the test would take an hour. I said of course, that makes sense, I have to check in, get undressed, sign some paperwork, etc. And their coordinator said no, all that was taken care of in the 30 minutes before the test itself, the actual appointment would be for 90 minutes so that we budget 60 minutes for the test. Um, no. What are they doing in there for an hour? You push some saline, take a few pictures on the ultrasound, remove the catheter, and you're done! I don't dare look it up because even reading descriptions of the procedure will upset me for the rest of the day, but has anyone ever heard of this procedure lasting more than a few moments? Long story short, I said thanks but no thanks and called the fertility clinic instead. Four days later, I had a 20-minute appointment there during my lunch break and was back at my desk before anyone could even notice I was gone (so yes, Clinic 1 does score points for efficiency.)
However, now that my cycle is underway, I received a very nice phone call from a very nice nurse who has been assigned to my case. She was new to the clinic (at least, I hadn't interacted with her at all during my previous cycle) and I took a deep breath and gave her a little background information. I explained that the last cycle I had was incredibly traumatic, that I now felt very anxious and uncomfortable to even be in their building, and that at one point I had tried to coordinate at least part of my care through my OB to avoid having to go to the fertility clinic any more than absolutely necessary. She seemed sympathetic but not terribly interested in the details of my story - except that a few days after our discussion, she called me again to say that she had arranged for my next ultrasound and bloodwork to take place at my OB's office so I didn't have to come back to their facility. And of course it was terrible timing, I was about to run to a meeting and I was holding a bunch of papers and grabbing my purse and my laptop etc., and I sort of just said "Okay, thanks, bye" and hung up.
Should I have thanked her profusely? Fallen all over myself to tell her how very grateful I was for her help? Probably. It's the polite thing to do, after all. She didn't have to make those extra phone calls and fax over those extra orders. And I really appreciate her help with this - I'm dreading the experience anyway and knowing that I don't have to sit in a waiting room that makes me have panic attacks is great.
Honestly, though, I'm not sure how to have that conversation without sacrificing any more of my dignity. I struggle through these waves of self-loathing about having returned to Clinic 1 - it's sort of a credibility thing. How bad could it really have been if I'm going back? If I hated it so much, I wouldn't still be their patient, right? Something traumatic might have happened to me there, but what kind of person lives through that experience and simply goes back for more? Am I just colluding with their "let's torture Charlotte" plan? Have I finally accepted that they were right, that I was personally reduced by my diagnosis, that I am to blame for my infertility, that my reaction to their perfectly standard and humane treatment was just plain extreme, that they did nothing wrong and the fault does indeed lie with me?
My strategy towards those feelings thus far has been to be as detached and professional as possible. I've been giving them my office phone number, for example, since I know that at work I won't let myself fall apart when they call with appointment reminders or whatever. I would rather die than show any vulnerability to any member of my care team. (It's true that my SHG was pretty straightforward, but there was a moment when I asked the doctor how much more saline she had to push into my uterus, and I hated myself for doing it. I've been beating myself up about it ever since. I should have been more stoic.) So calling this nurse back and telling her how much I appreciate her efforts on my behalf is really throwing me for a loop. I am genuinely grateful for her help, but I also don't ever want to owe her anything. I don't want to owe any of them anything. I don't want to be the patient who requires special treatment because she's such a special snowflake. I just want to get out of there in one piece.
So: to those readers who work in a medical profession, and I know there are a few of you, listen up. The power dynamic between patients and caregivers is no joke. I know, you're really friendly with your patients. You put them at ease, you're kind to them and knowledgeable about their care and you would never want to make them feel uncomfortable in your presence. You are also the one on the other end of the needle. At the end of the day, they are physically at your mercy. You might forget this from time to time - it's easier to ignore these things when you're the member of the privileged class - but trust me, your patients do not. They imbue your words and actions with deeper meaning than you do to theirs, so choose them carefully. (Example: just look at this blog post! No, actually, look at this whole damn blog!) It's that old familiar great power-great responsibility thing, of course. And bear in mind that if your patients ever seem insufficiently grateful for all of your efforts, the reasons behind their reaction may be more complicated than you know.
***
To my nurse, who with any luck will never read this: thank you.
What happened was this: a few months ago, I was trying desperately to find a way to go back to Clinic 1 for a frozen embryo transfer without, basically, going back to Clinic 1. Even a FET cycle takes a lot of cashish, and I wasn't convinced that I was going to feel any less anxious at Clinic 2, so I tried to see if Clinic 1 would be okay with determining my treatment based on tests (such as the sonohysterogram, ultrasounds, and bloodwork) performed at my OB's office. OB-Gyns also perform SHGs, you know, they aren't the exclusive property of the REs of the world! Clinic 1 was surprisingly okay with it - there were some paperwork hassles that I would have to coordinate, but the only time I would have to see them was for the actual transfer and a consult appointment or two.
This was all back when I thought the only thing determining my family planning efforts was that I would "lose" the 3 remaining IVF cycles covered by my insurance in June 2014. But then! My ovaries woke back up and all of a sudden the schedule was real, with dates circled on the calendar and receptionists who were trying their hardest to fit me in. My SHG back in 2011 at my fertility clinic was a five-minute event so I was expecting to hear something similar from the OB. However, not only did they not have an opening for 3 weeks, they said that the test would take an hour. I said of course, that makes sense, I have to check in, get undressed, sign some paperwork, etc. And their coordinator said no, all that was taken care of in the 30 minutes before the test itself, the actual appointment would be for 90 minutes so that we budget 60 minutes for the test. Um, no. What are they doing in there for an hour? You push some saline, take a few pictures on the ultrasound, remove the catheter, and you're done! I don't dare look it up because even reading descriptions of the procedure will upset me for the rest of the day, but has anyone ever heard of this procedure lasting more than a few moments? Long story short, I said thanks but no thanks and called the fertility clinic instead. Four days later, I had a 20-minute appointment there during my lunch break and was back at my desk before anyone could even notice I was gone (so yes, Clinic 1 does score points for efficiency.)
However, now that my cycle is underway, I received a very nice phone call from a very nice nurse who has been assigned to my case. She was new to the clinic (at least, I hadn't interacted with her at all during my previous cycle) and I took a deep breath and gave her a little background information. I explained that the last cycle I had was incredibly traumatic, that I now felt very anxious and uncomfortable to even be in their building, and that at one point I had tried to coordinate at least part of my care through my OB to avoid having to go to the fertility clinic any more than absolutely necessary. She seemed sympathetic but not terribly interested in the details of my story - except that a few days after our discussion, she called me again to say that she had arranged for my next ultrasound and bloodwork to take place at my OB's office so I didn't have to come back to their facility. And of course it was terrible timing, I was about to run to a meeting and I was holding a bunch of papers and grabbing my purse and my laptop etc., and I sort of just said "Okay, thanks, bye" and hung up.
Should I have thanked her profusely? Fallen all over myself to tell her how very grateful I was for her help? Probably. It's the polite thing to do, after all. She didn't have to make those extra phone calls and fax over those extra orders. And I really appreciate her help with this - I'm dreading the experience anyway and knowing that I don't have to sit in a waiting room that makes me have panic attacks is great.
Honestly, though, I'm not sure how to have that conversation without sacrificing any more of my dignity. I struggle through these waves of self-loathing about having returned to Clinic 1 - it's sort of a credibility thing. How bad could it really have been if I'm going back? If I hated it so much, I wouldn't still be their patient, right? Something traumatic might have happened to me there, but what kind of person lives through that experience and simply goes back for more? Am I just colluding with their "let's torture Charlotte" plan? Have I finally accepted that they were right, that I was personally reduced by my diagnosis, that I am to blame for my infertility, that my reaction to their perfectly standard and humane treatment was just plain extreme, that they did nothing wrong and the fault does indeed lie with me?
My strategy towards those feelings thus far has been to be as detached and professional as possible. I've been giving them my office phone number, for example, since I know that at work I won't let myself fall apart when they call with appointment reminders or whatever. I would rather die than show any vulnerability to any member of my care team. (It's true that my SHG was pretty straightforward, but there was a moment when I asked the doctor how much more saline she had to push into my uterus, and I hated myself for doing it. I've been beating myself up about it ever since. I should have been more stoic.) So calling this nurse back and telling her how much I appreciate her efforts on my behalf is really throwing me for a loop. I am genuinely grateful for her help, but I also don't ever want to owe her anything. I don't want to owe any of them anything. I don't want to be the patient who requires special treatment because she's such a special snowflake. I just want to get out of there in one piece.
So: to those readers who work in a medical profession, and I know there are a few of you, listen up. The power dynamic between patients and caregivers is no joke. I know, you're really friendly with your patients. You put them at ease, you're kind to them and knowledgeable about their care and you would never want to make them feel uncomfortable in your presence. You are also the one on the other end of the needle. At the end of the day, they are physically at your mercy. You might forget this from time to time - it's easier to ignore these things when you're the member of the privileged class - but trust me, your patients do not. They imbue your words and actions with deeper meaning than you do to theirs, so choose them carefully. (Example: just look at this blog post! No, actually, look at this whole damn blog!) It's that old familiar great power-great responsibility thing, of course. And bear in mind that if your patients ever seem insufficiently grateful for all of your efforts, the reasons behind their reaction may be more complicated than you know.
***
To my nurse, who with any luck will never read this: thank you.
Monday, October 14, 2013
Sequel in pre-production
Well, this is happening. IVF 2: Return of the Frozen Embryos is coming soon to a theater near you.
My sonohysterogram wasn't that bad, but then, I didn't remember it being anything to write home about after my first IVF either. If you look carefully you'll see that it doesn't even appear in my writing from that time except as a brief mention in my first post. I mean, there's a little bit of cramping and what I perceived as a deep burn from inside my uterus, but a partial list of things that hurt more than a sonohysterogram would include stubbing my toe, grazing my hand against a hot teakettle, and slicing open my thumb with the blade of an open pair of scissors (all of which I've done this week. Go me.) Yes, I was completely freaking out the whole time, but that's old news.
More interesting was what the test found - my uterus is fine and dandy, but my ovaries are back to making trouble. They were so quiet for so long but it's clear now that when I stopped nursing back in August, the mini-pill alone was not enough to stop me from ovulating, and there was evidence of that on the scan- including a brand new cyst. It's on my right ovary, 4 cm, and in an interesting departure from our usually scheduled programming, may not be an endometrioma. The current theory is that it's a simple ovarian cyst common in women of reproductive age, so it may go away on its own (shrink? rupture? nobody seems to want to discuss that with me...) and the only real risk is that if its a functional cyst then it could mess with my hormones at the end of my upcoming 20 days on lupron.
Wait, what? Lupron? Already? Yes, friends, I will start it later this week. Almost one year to the day after the birth of my beloved first child, I will begin injecting myself again with drugs in an effort to give him a sibling. I thought we had more time before this whole process started again, I really did. Can I really do this again? Can I disrupt my life, my husband's life, and now my child's life by going through the same terrible process as in 2011-12? Getting this diagnosis meant choosing the best of a series of bad options for my body going forward. I hate that, basically, my kids are wrapped up in those choices. There are two separate decisionmaking processes here and in an ideal world we could tackle them separately: first, what should I do to keep my body as healthy as possible for as long as possible? And second, do we want to add another member to our family?
Our decision is to move forward with the FET in early December. It's a compromise in a lot of ways but I hope and pray that it's the beginning of the end of this whole IVF nightmare. A huge amount of questions remain unanswered - will our incredible luck hold, and will I get pregnant again? If this cycle doesn't work, will attempt another one? If this cycle does work, and we still have an embryo or two left in the freezer, will we try for yet another pregnancy? How far am I willing to go to try to reproduce before I give up, hug my child and husband tight, and wait to see what my body does next?
My sonohysterogram wasn't that bad, but then, I didn't remember it being anything to write home about after my first IVF either. If you look carefully you'll see that it doesn't even appear in my writing from that time except as a brief mention in my first post. I mean, there's a little bit of cramping and what I perceived as a deep burn from inside my uterus, but a partial list of things that hurt more than a sonohysterogram would include stubbing my toe, grazing my hand against a hot teakettle, and slicing open my thumb with the blade of an open pair of scissors (all of which I've done this week. Go me.) Yes, I was completely freaking out the whole time, but that's old news.
More interesting was what the test found - my uterus is fine and dandy, but my ovaries are back to making trouble. They were so quiet for so long but it's clear now that when I stopped nursing back in August, the mini-pill alone was not enough to stop me from ovulating, and there was evidence of that on the scan- including a brand new cyst. It's on my right ovary, 4 cm, and in an interesting departure from our usually scheduled programming, may not be an endometrioma. The current theory is that it's a simple ovarian cyst common in women of reproductive age, so it may go away on its own (shrink? rupture? nobody seems to want to discuss that with me...) and the only real risk is that if its a functional cyst then it could mess with my hormones at the end of my upcoming 20 days on lupron.
Wait, what? Lupron? Already? Yes, friends, I will start it later this week. Almost one year to the day after the birth of my beloved first child, I will begin injecting myself again with drugs in an effort to give him a sibling. I thought we had more time before this whole process started again, I really did. Can I really do this again? Can I disrupt my life, my husband's life, and now my child's life by going through the same terrible process as in 2011-12? Getting this diagnosis meant choosing the best of a series of bad options for my body going forward. I hate that, basically, my kids are wrapped up in those choices. There are two separate decisionmaking processes here and in an ideal world we could tackle them separately: first, what should I do to keep my body as healthy as possible for as long as possible? And second, do we want to add another member to our family?
Our decision is to move forward with the FET in early December. It's a compromise in a lot of ways but I hope and pray that it's the beginning of the end of this whole IVF nightmare. A huge amount of questions remain unanswered - will our incredible luck hold, and will I get pregnant again? If this cycle doesn't work, will attempt another one? If this cycle does work, and we still have an embryo or two left in the freezer, will we try for yet another pregnancy? How far am I willing to go to try to reproduce before I give up, hug my child and husband tight, and wait to see what my body does next?
Thursday, October 3, 2013
I'm having a sonohysterogram tomorrow?
You know how sometimes nothing happens for a long time and then everything starts happening all at once?
When we last left off with our story, I was debating between two clinics with very different financial implications and thinking tentatively about an FET between now and next June. Well, two things happened: one is that after a lot of looking at our bank account and the calendar, I'm going with Clinic 1. (I know. The place where I had a bad experience. I will get to this in a moment.) And the second thing is that I got my period - twice.
Wait, what? I bled after childbirth last fall, obviously. But then I started taking the mini-pill (which gives you a continuous low dose of progestin) and I didn't bleed at ALL between December and August 28... when I saw some spotting and immediately got a serious pit in my stomach. The mini-pill only suppresses ovulation in about half of menstrual cycles, and by the end of the day I knew what was up. I was sure it was my fault - I had been late with one pill about two weeks earlier (the first and only time, I swear!) and it was probably a one-off. My doctor had told me that I might have some irregular bleeding while I was taking it, but this wasn't light and it wasn't much fun. I mean, I've dealt with endometriosis cramps for years and pre-diagnosis I was pretty stoic about it because I thought it was normal, but now that I know it isn't normal and that every time I bleed it's literally damaging my body on the inside, I have much less patience for the whole process.
Still, the bleeding only lasted a week, and then we were back to our regularly scheduled programming. I was so confident that this was an isolated event that I didn't even have any supplies on me when, 29 days later, I noticed that - oh sh*t - I had gotten my period again. Once could have just been a mistake. Twice was a pattern. Looks like the game has changed, and the mini-pill is no longer providing me the protection I thought it would. Touché, body, touché.
Given this new information and after discussion with my OB-Gyn, my RE, and my insurance, I have decided to proceed with a FET cycle for December. Which means that in the coming weeks, I need to survive at least one consult appointment, a sonohysterogram, several blood draws, probably three transvaginal ultrasounds to check my uterine lining, and the actual transfer itself at Clinic 1. And that sonohysterogram is taking place TOMORROW.
To say that my feelings about starting this process again are mixed is obviously an understatement. Part of me is terrified about what's coming. Part of me is simply bewildered that it's happening again so soon. And part of me is oddly satisfied that I get to return to the scene of the crime, as it were. Of course I don't want to do any of this, nobody does. But as bad as it has been to be Clinic 1's patient, at least I'm not facing the additional guilt of writing big checks and asking people to take time off work to drive me, tripping on valium, to and from procedures at Clinic 2. I don't have to explain myself as much at Clinic 1 - at Clinic 2 I went to such trouble to introduce myself to the doctor and nurses as a patient who might need a little more accommodation and hand-holding and their sympathy mostly just made me feel embarrassed. Now I'm just planning on keeping my head down, talking as little as possible with everyone I encounter, and hopefully getting out of Clinic 1 with a healthy pregnancy. My expectations are different; I know that terrible things are going to happen to my body and I know I'm not going to get any sympathy for that so I might as well stop stalling and get on with it. I'm trying to work more on self-reliance and not falling apart at the drop of a hat, and this decision is part of that effort.
One more thing before I sign off: it occurs to me that when I mention trauma and traumatic events in my past, I should be clear that I am not referring to sexual abuse or assault. There are survivors of both who are close to my heart and I would never want to minimize any of their experience. Trauma occurs in many ways and for many reasons; my sympathies and support go out to out to anyone who struggles with any of it.
When we last left off with our story, I was debating between two clinics with very different financial implications and thinking tentatively about an FET between now and next June. Well, two things happened: one is that after a lot of looking at our bank account and the calendar, I'm going with Clinic 1. (I know. The place where I had a bad experience. I will get to this in a moment.) And the second thing is that I got my period - twice.
Wait, what? I bled after childbirth last fall, obviously. But then I started taking the mini-pill (which gives you a continuous low dose of progestin) and I didn't bleed at ALL between December and August 28... when I saw some spotting and immediately got a serious pit in my stomach. The mini-pill only suppresses ovulation in about half of menstrual cycles, and by the end of the day I knew what was up. I was sure it was my fault - I had been late with one pill about two weeks earlier (the first and only time, I swear!) and it was probably a one-off. My doctor had told me that I might have some irregular bleeding while I was taking it, but this wasn't light and it wasn't much fun. I mean, I've dealt with endometriosis cramps for years and pre-diagnosis I was pretty stoic about it because I thought it was normal, but now that I know it isn't normal and that every time I bleed it's literally damaging my body on the inside, I have much less patience for the whole process.
Still, the bleeding only lasted a week, and then we were back to our regularly scheduled programming. I was so confident that this was an isolated event that I didn't even have any supplies on me when, 29 days later, I noticed that - oh sh*t - I had gotten my period again. Once could have just been a mistake. Twice was a pattern. Looks like the game has changed, and the mini-pill is no longer providing me the protection I thought it would. Touché, body, touché.
Given this new information and after discussion with my OB-Gyn, my RE, and my insurance, I have decided to proceed with a FET cycle for December. Which means that in the coming weeks, I need to survive at least one consult appointment, a sonohysterogram, several blood draws, probably three transvaginal ultrasounds to check my uterine lining, and the actual transfer itself at Clinic 1. And that sonohysterogram is taking place TOMORROW.
To say that my feelings about starting this process again are mixed is obviously an understatement. Part of me is terrified about what's coming. Part of me is simply bewildered that it's happening again so soon. And part of me is oddly satisfied that I get to return to the scene of the crime, as it were. Of course I don't want to do any of this, nobody does. But as bad as it has been to be Clinic 1's patient, at least I'm not facing the additional guilt of writing big checks and asking people to take time off work to drive me, tripping on valium, to and from procedures at Clinic 2. I don't have to explain myself as much at Clinic 1 - at Clinic 2 I went to such trouble to introduce myself to the doctor and nurses as a patient who might need a little more accommodation and hand-holding and their sympathy mostly just made me feel embarrassed. Now I'm just planning on keeping my head down, talking as little as possible with everyone I encounter, and hopefully getting out of Clinic 1 with a healthy pregnancy. My expectations are different; I know that terrible things are going to happen to my body and I know I'm not going to get any sympathy for that so I might as well stop stalling and get on with it. I'm trying to work more on self-reliance and not falling apart at the drop of a hat, and this decision is part of that effort.
One more thing before I sign off: it occurs to me that when I mention trauma and traumatic events in my past, I should be clear that I am not referring to sexual abuse or assault. There are survivors of both who are close to my heart and I would never want to minimize any of their experience. Trauma occurs in many ways and for many reasons; my sympathies and support go out to out to anyone who struggles with any of it.
Tuesday, September 24, 2013
We're sorry that this happened to you, and we're here to help
That's what I wanted to hear when I found out that my endometriosis was extensive and my Fallopian tubes were blocked. I really thought that someone, somewhere along the way, would say it to me. Or I thought they would say it in their actions, kind of the way all of the oncology doctors and nurses kept telling my mom about how much they wanted to help her manage her side effects during chemo, there were support groups she could go to, and had she received the shawl that a local survivor knitted? From the moment of her cancer diagnosis, everyone she interacted with was unequivocally supportive, and when I got my infertility diagnosis, I naively expected the same.
I never heard the phrase above, or anything like it. I heard other things that my doctors seemed to think were helpful: don't worry about whether you get right back into ovulating after surgery, "we can make you ovulate, that's not a problem." I really wouldn't worry about egg retrieval, "we'll probably relieve around 80% of your pain." Oh, you're feeling anxious while you're lying on the table about to start your retrieval? Well, let me point out this machine, "it might make some beeping noises but don't worry, everything is okay." I understand that your belly is in agony and you haven't been able to eat anything for days, but "it's normal to have pain after retrieval."
I've spent tons and tons of time thinking about this, and I think there was at least one really big disconnect between me and my doctors: what I saw as a tragedy, they saw as an opportunity, and later as a triumph. They skipped right over the part where I was trying to process the idea of myself as a sick person - of course I was sick, otherwise I wouldn't be seeking out their help, duh - and jumped right to the treatment they thought would solve all of my problems in one fell swoop, regardless of how invasive and life-changing it might be. Endometriosis recurs and worsens when left to its own devices, and my best options to keep things dormant after surgery were birth control pills, Lupron injections, or pregnancy that was only achievable through IVF. I had been trying to have a baby without success for almost a year, right? Well, now there was a really obvious reason explaining our lack of results, and the pregnancy would be beneficial to my body overall. And then! Then I got pregnant, first try, single embryo transfer! My IVF cycle was a success! They were happy for me, and I wished I could be happy too. But the whole time this was happening, I was driving home after work every day trying to see the road through tears, waiting until I got home so I could go upstairs, lie on the bed in the dark, and really sob. Something was terribly, deeply wrong with me, no one seemed to care about me or my needs when there was this potential-but-then-actual pregnancy to consider, and every time I was confronted with someone telling me that the destruction of my body was good news or that the pain and discomfort I was experiencing during treatment was normal, I wanted to shout at them. Didn't they see? This isn't good! It's awful! And if it's normal, well, it shouldn't be!
The worst part by far - I can hardly type this - was that I kept thinking I would wake up one day and I would feel the overwhelming joy that I had always thought I would experience when I got pregnant. I did want children, really and truly. I grew up wanting them, my husband and I had always discussed having a family, and if you had asked me about my #1 goal in life, I would (and still will) answer "to be a mother." Some of the pain that got wrapped up in this whole mess was truly about infertility, though I know that my brief dalliance with the fear of never becoming a parent doesn't come anywhere close to the heartache that many other infertility bloggers have experienced. Much more of my experience, however, was about the lack of bodily integrity and helplessness I felt during a time of extraordinary physical and emotional vulnerability, and what I perceived as a lack of support for these feelings from almost everyone around me. I thank G-d for my son every day and he is worth every second of this pain, but oh, how it breaks my heart when I remember how I felt during his conception, gestation, and birth and I compare that to the joy and celebration he deserved.
Since this is my blog and I want to keep writing about the disconnects between what people said and what I heard, I'm about to take this normal-sized post and turn it into a MegaPost. TL;DR: I'm really upset blah blah blah. Now, to expand a bit on the examples above:
"The tubes were completely blocked. You'll need to have IVF in order to conceive."
This was my OB to me as I was lying in the recovery room after my initial surgery. He is an extraordinarily kind person, and I think he'd be horrified to know that when he said this, something within me broke irretrievably. I had thought, naively, that after surgery I might be "cured" of the endometriomas that had brought me there (as much as I could be cured of a chronic condition, anyway.) At the very least I expected to have bought myself some time to process the trauma of the surgery itself - the surprisingly upsetting knowledge that I had let strangers mess around in my vagina and in my body while I was unconscious - before I had to make a massive life decision about having a child. I knew there was a small chance they might have found cancer in me, and it was a big relief when he said earlier in this same conversation that all the tissue they removed appeared to be benign. But then he mentioned IVF, and he suggested embarking on it as soon as possible - given the timing of my cycle, it could even be next month! - and the general anxiety I had felt building in the weeks before my surgery crystallized into a very real, almost palpable, pointy-sided knot of fear. Holy shit, IVF, holy shit, holy shit. I have to do IVF and I have to do more tests and more procedures and let more people violate my body and what if it works and I actually get pregnant and then I need even more exams and procedures and I have to give birth and somehow take care of an infant while I feel so unbelievably terrible about myself?
"I wouldn't worry too much about egg retrieval. We give you a local around the cervix and then we only have to puncture the wall of the vagina twice, once on each side. There aren't many nerves once we're in the ovary and most people aren't too bothered by it. We'll also give you versed and fentanyl, and that will probably relieve around 80% of the pain."
"Now, I'm going to hold your hand, okay? And I know you're feeling anxious, so I want to make sure I point out that machine over there. It's got lots of buttons and it's going to make some beeping sounds, but I don't want you to be nervous, it doesn't mean anything bad. It was probably designed by a man, they don't always understand that these things can be annoying."
This was the nurse coordinator at my IVF clinic, with whom I met prior to my retrieval as part of the fallout from when I "expressed my concern" to my RE (see above.) After the not-very-productive conversation we had where she tried to reassure me about the procedure in advance but ended up getting pretty defensive, I suspect that she made sure that she personally would be the nurse holding my hand throughout in an effort to help mitigate my concerns. This was a really, really nice gesture... except that the things she wanted to reassure me about were entirely not the ones that bothered me. I remember that as I lay down on the bed and put my legs in those awful, awful industrial-strength stirrups, she made a point of showing me the equipment in the room. She mentioned that some of it would beep occasionally and said that it was likely designed by a man, which, what? What does that have to do with anything? And also - I am freaking out because I am about to have a gigantic hollow needle shoved up into my vagina so my flesh can be sucked out of my body, not because there's an infusion pump in the room! I know she meant well, and I know that there wasn't much positive news she could tell me about the giant needle, so she was trying her best to demystify everything else. Except I didn't need it demystified - I mean, even if I didn't have any professional connection to medicine, I still live in North America in 2013 and use a computer and carry a cellphone and I've installed smoke detectors in my home, so things that beep aren't exactly a tremendous mystery. What she thought was helpful, I thought was condescending.
"Hmm... yes, I remember Dr. X saying that he punctured an endometrioma during retrieval, but that shouldn't have much effect on your recovery. It sounds like the pain you're describing is normal."
Same nurse. Still condescending. Let me back up a bit here - when my RE punctured my endometrioma, it was by far the most painful part of my retrieval. I continued to have significant belly pain while in recovery, which seemed to surprise the nursing staff. I spent the next three days trying to remain as still as possible and eating next to nothing, because every time I had any kind of movement within or outside my belly it was like having bad endometriosis cramps. I'm talking about rationing the water I drank so I didn't have to walk to the bathroom any more than the bare minimum. At this point I was about 3 months out from my laparoscopic surgery so the memories were very fresh, and I remember thinking that the recovery experiences were about equivalent - except that with my IVF cycle, I couldn't take the strong painkillers I had taken for my surgery, and I didn't have the days off from work. So when this nurse called me the Saturday after my retrieval to ask how things were going - a very nice thing to do, especially on a weekend! - I was past the worst of it, but I did mention that I had been in a lot of pain, perhaps because of the punctured endometrioma and the fluid that was released into my abdominal cavity? She was pretty dismissive of my theory and said that the pain I had felt was normal. Again, she might have meant well (and I could easily have been wrong about the endometrioma puncture and the two things were unrelated) but instead of feeling reassured I felt like I was being chastened for complaining.
None of this was a major problem, really. People have miscommunications all the time. Even with everything that happened where I felt like I was completely alone in my suffering, completely at fault for my diagnosis and my reaction to treatment, I think I would have moved on long ago if it hadn't been for my memories of the egg retrieval itself. That's the experience that keeps replaying itself when I close my eyes to go to sleep at night. It's what I think about when I get up in the morning - you know how sometimes you wake up and you can't quite remember something really big? And then the memory comes flooding back and you think, that's right, I did get a raise yesterday! That's what happens to me every day. I wake up and everything seems okay until I remember: stirrups, low lighting, surgical scrubs, you let someone do this to you. I'm varying degrees of functional throughout the day depending on how distracted I am - sometimes I'm fine, sometimes I'm sobbing. But when it's time to go to sleep at night, I fight it for as long as I can because I know that in the space right before unconsciousness I have to see everything again. There's no distraction at that point - just me, looking at my doctor's eyes above his surgical mask and below his cap, trying to be friendly as he waves at me from between my splayed legs. Over and over. Every day is the day of my egg retrieval, so every day is the worst day of my infertility journey. It just. Doesn't. End.
I never heard the phrase above, or anything like it. I heard other things that my doctors seemed to think were helpful: don't worry about whether you get right back into ovulating after surgery, "we can make you ovulate, that's not a problem." I really wouldn't worry about egg retrieval, "we'll probably relieve around 80% of your pain." Oh, you're feeling anxious while you're lying on the table about to start your retrieval? Well, let me point out this machine, "it might make some beeping noises but don't worry, everything is okay." I understand that your belly is in agony and you haven't been able to eat anything for days, but "it's normal to have pain after retrieval."
I've spent tons and tons of time thinking about this, and I think there was at least one really big disconnect between me and my doctors: what I saw as a tragedy, they saw as an opportunity, and later as a triumph. They skipped right over the part where I was trying to process the idea of myself as a sick person - of course I was sick, otherwise I wouldn't be seeking out their help, duh - and jumped right to the treatment they thought would solve all of my problems in one fell swoop, regardless of how invasive and life-changing it might be. Endometriosis recurs and worsens when left to its own devices, and my best options to keep things dormant after surgery were birth control pills, Lupron injections, or pregnancy that was only achievable through IVF. I had been trying to have a baby without success for almost a year, right? Well, now there was a really obvious reason explaining our lack of results, and the pregnancy would be beneficial to my body overall. And then! Then I got pregnant, first try, single embryo transfer! My IVF cycle was a success! They were happy for me, and I wished I could be happy too. But the whole time this was happening, I was driving home after work every day trying to see the road through tears, waiting until I got home so I could go upstairs, lie on the bed in the dark, and really sob. Something was terribly, deeply wrong with me, no one seemed to care about me or my needs when there was this potential-but-then-actual pregnancy to consider, and every time I was confronted with someone telling me that the destruction of my body was good news or that the pain and discomfort I was experiencing during treatment was normal, I wanted to shout at them. Didn't they see? This isn't good! It's awful! And if it's normal, well, it shouldn't be!
The worst part by far - I can hardly type this - was that I kept thinking I would wake up one day and I would feel the overwhelming joy that I had always thought I would experience when I got pregnant. I did want children, really and truly. I grew up wanting them, my husband and I had always discussed having a family, and if you had asked me about my #1 goal in life, I would (and still will) answer "to be a mother." Some of the pain that got wrapped up in this whole mess was truly about infertility, though I know that my brief dalliance with the fear of never becoming a parent doesn't come anywhere close to the heartache that many other infertility bloggers have experienced. Much more of my experience, however, was about the lack of bodily integrity and helplessness I felt during a time of extraordinary physical and emotional vulnerability, and what I perceived as a lack of support for these feelings from almost everyone around me. I thank G-d for my son every day and he is worth every second of this pain, but oh, how it breaks my heart when I remember how I felt during his conception, gestation, and birth and I compare that to the joy and celebration he deserved.
Since this is my blog and I want to keep writing about the disconnects between what people said and what I heard, I'm about to take this normal-sized post and turn it into a MegaPost. TL;DR: I'm really upset blah blah blah. Now, to expand a bit on the examples above:
"Oh, don't worry about whether you're ovulating on your own, we can make you ovulate. That's not a problem."
My RE said this to me at our very first consult, when we knew I needed surgery to remove my endometriomas but we didn't yet know that IVF would be my only option to conceive afterwards. For the six months before this meeting, I had been diligently taking my temperature and tracking my cycles, and I was pleased to see that they looked pretty typical even though there had obviously been no results. I thought that was a good thing and an indicator that I was probably healthy. But during our meeting, my doctor only looked at my Fertility Friend printouts for a second before saying the above. I remember not knowing how to react - I think I went with a nervous smile. I was scared about the fact that I needed surgery in the first place, and I was clinging to any sign that my body wasn't as damaged as I feared. I suspect that my doctor was trying to be reassuring - "Don't worry Charlotte, even if your ovarian reserve is damaged then we have ways of getting around it!" - but the reassurance I was looking for was more along the lines of "That's great news, because it might make your treatment easier." Also: nobody is going to make me ovulate. I am going to take drugs to ovulate when and if I want to, thank you very much.
"The tubes were completely blocked. You'll need to have IVF in order to conceive."
This was my OB to me as I was lying in the recovery room after my initial surgery. He is an extraordinarily kind person, and I think he'd be horrified to know that when he said this, something within me broke irretrievably. I had thought, naively, that after surgery I might be "cured" of the endometriomas that had brought me there (as much as I could be cured of a chronic condition, anyway.) At the very least I expected to have bought myself some time to process the trauma of the surgery itself - the surprisingly upsetting knowledge that I had let strangers mess around in my vagina and in my body while I was unconscious - before I had to make a massive life decision about having a child. I knew there was a small chance they might have found cancer in me, and it was a big relief when he said earlier in this same conversation that all the tissue they removed appeared to be benign. But then he mentioned IVF, and he suggested embarking on it as soon as possible - given the timing of my cycle, it could even be next month! - and the general anxiety I had felt building in the weeks before my surgery crystallized into a very real, almost palpable, pointy-sided knot of fear. Holy shit, IVF, holy shit, holy shit. I have to do IVF and I have to do more tests and more procedures and let more people violate my body and what if it works and I actually get pregnant and then I need even more exams and procedures and I have to give birth and somehow take care of an infant while I feel so unbelievably terrible about myself?
"I wouldn't worry too much about egg retrieval. We give you a local around the cervix and then we only have to puncture the wall of the vagina twice, once on each side. There aren't many nerves once we're in the ovary and most people aren't too bothered by it. We'll also give you versed and fentanyl, and that will probably relieve around 80% of the pain."
"Now, I'm going to hold your hand, okay? And I know you're feeling anxious, so I want to make sure I point out that machine over there. It's got lots of buttons and it's going to make some beeping sounds, but I don't want you to be nervous, it doesn't mean anything bad. It was probably designed by a man, they don't always understand that these things can be annoying."
This was the nurse coordinator at my IVF clinic, with whom I met prior to my retrieval as part of the fallout from when I "expressed my concern" to my RE (see above.) After the not-very-productive conversation we had where she tried to reassure me about the procedure in advance but ended up getting pretty defensive, I suspect that she made sure that she personally would be the nurse holding my hand throughout in an effort to help mitigate my concerns. This was a really, really nice gesture... except that the things she wanted to reassure me about were entirely not the ones that bothered me. I remember that as I lay down on the bed and put my legs in those awful, awful industrial-strength stirrups, she made a point of showing me the equipment in the room. She mentioned that some of it would beep occasionally and said that it was likely designed by a man, which, what? What does that have to do with anything? And also - I am freaking out because I am about to have a gigantic hollow needle shoved up into my vagina so my flesh can be sucked out of my body, not because there's an infusion pump in the room! I know she meant well, and I know that there wasn't much positive news she could tell me about the giant needle, so she was trying her best to demystify everything else. Except I didn't need it demystified - I mean, even if I didn't have any professional connection to medicine, I still live in North America in 2013 and use a computer and carry a cellphone and I've installed smoke detectors in my home, so things that beep aren't exactly a tremendous mystery. What she thought was helpful, I thought was condescending.
"Hmm... yes, I remember Dr. X saying that he punctured an endometrioma during retrieval, but that shouldn't have much effect on your recovery. It sounds like the pain you're describing is normal."
Same nurse. Still condescending. Let me back up a bit here - when my RE punctured my endometrioma, it was by far the most painful part of my retrieval. I continued to have significant belly pain while in recovery, which seemed to surprise the nursing staff. I spent the next three days trying to remain as still as possible and eating next to nothing, because every time I had any kind of movement within or outside my belly it was like having bad endometriosis cramps. I'm talking about rationing the water I drank so I didn't have to walk to the bathroom any more than the bare minimum. At this point I was about 3 months out from my laparoscopic surgery so the memories were very fresh, and I remember thinking that the recovery experiences were about equivalent - except that with my IVF cycle, I couldn't take the strong painkillers I had taken for my surgery, and I didn't have the days off from work. So when this nurse called me the Saturday after my retrieval to ask how things were going - a very nice thing to do, especially on a weekend! - I was past the worst of it, but I did mention that I had been in a lot of pain, perhaps because of the punctured endometrioma and the fluid that was released into my abdominal cavity? She was pretty dismissive of my theory and said that the pain I had felt was normal. Again, she might have meant well (and I could easily have been wrong about the endometrioma puncture and the two things were unrelated) but instead of feeling reassured I felt like I was being chastened for complaining.
None of this was a major problem, really. People have miscommunications all the time. Even with everything that happened where I felt like I was completely alone in my suffering, completely at fault for my diagnosis and my reaction to treatment, I think I would have moved on long ago if it hadn't been for my memories of the egg retrieval itself. That's the experience that keeps replaying itself when I close my eyes to go to sleep at night. It's what I think about when I get up in the morning - you know how sometimes you wake up and you can't quite remember something really big? And then the memory comes flooding back and you think, that's right, I did get a raise yesterday! That's what happens to me every day. I wake up and everything seems okay until I remember: stirrups, low lighting, surgical scrubs, you let someone do this to you. I'm varying degrees of functional throughout the day depending on how distracted I am - sometimes I'm fine, sometimes I'm sobbing. But when it's time to go to sleep at night, I fight it for as long as I can because I know that in the space right before unconsciousness I have to see everything again. There's no distraction at that point - just me, looking at my doctor's eyes above his surgical mask and below his cap, trying to be friendly as he waves at me from between my splayed legs. Over and over. Every day is the day of my egg retrieval, so every day is the worst day of my infertility journey. It just. Doesn't. End.
Tuesday, September 17, 2013
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.
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.
Tuesday, May 14, 2013
Stuff I'm Finally Saying Out Loud
I'm not infertile anymore. Seriously, I don't fit the definition: "not capable of initiating, sustaining, or supporting reproduction." I didn't initiate reproduction (at least, I didn't do it alone) but I did sustain and support it. I need a new label.
The reason I flipped out when I was diagnosed was not because I was infertile. It was because something was wrong with my body. That's not the same.
Giving birth to a healthy baby didn't change how I feel about my body. I still live in fear of it malfunctioning.
During my pregnancy, I didn't identify with other post-IVF patients. I identified with women who got pregnant unexpectedly, and who were struggling with the idea of becoming a mother. I felt awful when I remembered how grateful I was supposed to be.
I feel tremendous, crushing guilt about requiring IVF to conceive. First my body screwed up, and then my over-the-top reaction to it hurt my husband, family, friends, and might even have hurt my son. I should have handled it better.
My fertility issues may still be hurting the people I love.
As I was getting into the wheelchair to leave the hospital after my initial surgery to remove the endometriomas, right after I learned I would need IVF at the earliest possible opportunity, I had a single clear and frantic thought: I am not ready to go home. I can't take care of myself right now. I am destroyed. I got in the wheelchair anyway.
I wish somebody had stopped me from going through with my IVF cycle. Both my Ob-Gyn and my RE should have had the sense to say "wait up, you are clearly not okay, you need to fix yourself before you get pregnant."
Despite the above, I am EXCEEDINGLY, world-endingly grateful for my son. I want to be clear about that. I love him beyond words. His smile is the most beautiful thing I have ever seen in my entire life.
The saddest part of this for me is that my "regular" self always looked forward to pregnancy and envisioned having my first child as a happy time. When I stop to think about what I imagined vs. what we experienced, it breaks my heart. Especially since I ruined that joy for my husband, too.
As a result of this experience, I no longer believe that doctors and nurses have my best interests at heart. I don't trust them anymore.
Let's just finally throw this out there: I work in medicine. I deal with this stuff every day in my professional life. Separating the two has become a challenge.
When I say that therapy was "suggested" to me during my time of great unhappiness, I really mean that my loved ones tried repeatedly for months to get me to go. So did my doctors. I refused every single time, because:
I do not trust therapists. I think therapy is awful. I have tried it, and I do not like it. It makes me feel humiliated and dirty and much worse about myself. I rank my few, long-ago attempts at therapy as some of the most upsetting experiences of my life. Top ten, anyway.
This was far and away the worst experience of my entire life.
And I don't know how to move past it.
The reason I flipped out when I was diagnosed was not because I was infertile. It was because something was wrong with my body. That's not the same.
Giving birth to a healthy baby didn't change how I feel about my body. I still live in fear of it malfunctioning.
During my pregnancy, I didn't identify with other post-IVF patients. I identified with women who got pregnant unexpectedly, and who were struggling with the idea of becoming a mother. I felt awful when I remembered how grateful I was supposed to be.
I feel tremendous, crushing guilt about requiring IVF to conceive. First my body screwed up, and then my over-the-top reaction to it hurt my husband, family, friends, and might even have hurt my son. I should have handled it better.
My fertility issues may still be hurting the people I love.
As I was getting into the wheelchair to leave the hospital after my initial surgery to remove the endometriomas, right after I learned I would need IVF at the earliest possible opportunity, I had a single clear and frantic thought: I am not ready to go home. I can't take care of myself right now. I am destroyed. I got in the wheelchair anyway.
I wish somebody had stopped me from going through with my IVF cycle. Both my Ob-Gyn and my RE should have had the sense to say "wait up, you are clearly not okay, you need to fix yourself before you get pregnant."
Despite the above, I am EXCEEDINGLY, world-endingly grateful for my son. I want to be clear about that. I love him beyond words. His smile is the most beautiful thing I have ever seen in my entire life.
The saddest part of this for me is that my "regular" self always looked forward to pregnancy and envisioned having my first child as a happy time. When I stop to think about what I imagined vs. what we experienced, it breaks my heart. Especially since I ruined that joy for my husband, too.
As a result of this experience, I no longer believe that doctors and nurses have my best interests at heart. I don't trust them anymore.
Let's just finally throw this out there: I work in medicine. I deal with this stuff every day in my professional life. Separating the two has become a challenge.
When I say that therapy was "suggested" to me during my time of great unhappiness, I really mean that my loved ones tried repeatedly for months to get me to go. So did my doctors. I refused every single time, because:
I do not trust therapists. I think therapy is awful. I have tried it, and I do not like it. It makes me feel humiliated and dirty and much worse about myself. I rank my few, long-ago attempts at therapy as some of the most upsetting experiences of my life. Top ten, anyway.
This was far and away the worst experience of my entire life.
And I don't know how to move past it.
Tuesday, May 7, 2013
My Body's Doing Great; My Mind, Not So Much
First, the really good news: a followup scan of my ovaries revealed that they look healthy and normal! Well, mostly - there were two small endometriomas as of December, and although it does appear that they're still there, they're actually smaller than they were the last time we saw them. I guess that mini-pill really is doing something.
I don't mean to minimize the above. This is a really, really big deal. When my doctor confirmed that I was stable for the time being, I felt a tremendous weight lift off my shoulders. I've just bought myself six months of the status quo (knock on wood), and that's a pretty good quo if I do say so myself.
But. But but but but but. For a variety of reasons, the last three weeks have been pretty awful. I've been re-confronting a lot of my negative feelings about infertility, pregnancy, medical care, my body, and my own mental health. It's been over a year and a half since I found out that I was infertile. A very eventful year and a half, but still - this is not exactly breaking news. I am extraordinarily lucky and I feel so grateful that I have a healthy child after my first cycle of IVF. Yet I spent most of the past three weeks on the verge of tears while I waited to hear the all-clear from this scan. Why?
First of all, my infertility journey isn't over. Not by a long shot. I have three embryos on ice from the cycle that gave us our darling O, and I feel a responsibility to give each one of them a shot to grow into a baby. This means that there will come a day when I have to walk back into the fertility clinic that I associate with so many bad memories, sit down across a desk from my doctor, and go over my future plans with him. Then I'll have to go through at least one Frozen Embryo Transfer (FET) cycle with them - the same doctors, the same nurses, the same waiting room, the same exam rooms. I cannot tell you how much I am dreading this. And if my recent scan had come back with any indication that the cysts were growing, it was possible that I would have set up that next fertility appointment as soon as the clinic had an opening in their schedule. So while I'm thrilled and relieved that I bought myself at least another six months, I still know that this is going to happen at some point, and I do feel a bit like all I got was a stay of execution and not a full pardon.
Also, there was a bad moment during the scan when the ultrasound tech saw something odd in my uterus (no, not a baby, I promise) and asked if I had had an endometrial biopsy. Let me assure you now that I have no indications that would suggest I needed an endometrial biopsy, and when I spent a few minutes with good old Dr. Google looking at related ultrasound images after the appointment, I think that all the tech was asking was if I'd had one in the past since it might have explained a particular finding. I haven't, and the finding was benign, so there's nothing to worry about. Except that in between when she said it and when I got back to my computer and did my research, I took two minutes to look it up on my phone, and learned that it's usually an in-office procedure that is performed without sedation even though some women find it painful. This was enough to send me into a total tailspin. It's hard for me to articulate how upset I was even reading about women's experiences with endometrial biopsy; as I write this today, just getting the link for the sentence above I lost about twenty minutes reading comments and holding back tears. And this is for a procedure with which I have absolutely no connection! The problem is that I know someday, someone will recommend that I do have an endometrial biopsy - or a hysterosalpingogram, or a dilation and curettage, or any number of other gyn procedures that are invasive and painful up to and including another fresh IVF cycle - and I will just want to die.
Wanting to die when you hear that other people - who, let's recall, are not you - have had or are going to have painful gyn procedures is a bit extreme. I don't have any actual thought of suicide (shudder), I just have this idea in my head that experiencing more trauma between my legs would be so terrible that it seems incompatible with life as I know it. And that's not right, I know it isn't. Most of the time I feel fine - really, overall things are going well, and it's springtime and I'm wearing the sundresses I couldn't fit into last year and my baby has incredibly kissable cheeks - but I'm concerned that something so relatively minor could send me off the rails. Concerned, and angry, and ashamed, and all of the feelings that I struggled with last year. Clearly they're not just in the past.
I don't mean to minimize the above. This is a really, really big deal. When my doctor confirmed that I was stable for the time being, I felt a tremendous weight lift off my shoulders. I've just bought myself six months of the status quo (knock on wood), and that's a pretty good quo if I do say so myself.
But. But but but but but. For a variety of reasons, the last three weeks have been pretty awful. I've been re-confronting a lot of my negative feelings about infertility, pregnancy, medical care, my body, and my own mental health. It's been over a year and a half since I found out that I was infertile. A very eventful year and a half, but still - this is not exactly breaking news. I am extraordinarily lucky and I feel so grateful that I have a healthy child after my first cycle of IVF. Yet I spent most of the past three weeks on the verge of tears while I waited to hear the all-clear from this scan. Why?
First of all, my infertility journey isn't over. Not by a long shot. I have three embryos on ice from the cycle that gave us our darling O, and I feel a responsibility to give each one of them a shot to grow into a baby. This means that there will come a day when I have to walk back into the fertility clinic that I associate with so many bad memories, sit down across a desk from my doctor, and go over my future plans with him. Then I'll have to go through at least one Frozen Embryo Transfer (FET) cycle with them - the same doctors, the same nurses, the same waiting room, the same exam rooms. I cannot tell you how much I am dreading this. And if my recent scan had come back with any indication that the cysts were growing, it was possible that I would have set up that next fertility appointment as soon as the clinic had an opening in their schedule. So while I'm thrilled and relieved that I bought myself at least another six months, I still know that this is going to happen at some point, and I do feel a bit like all I got was a stay of execution and not a full pardon.
Also, there was a bad moment during the scan when the ultrasound tech saw something odd in my uterus (no, not a baby, I promise) and asked if I had had an endometrial biopsy. Let me assure you now that I have no indications that would suggest I needed an endometrial biopsy, and when I spent a few minutes with good old Dr. Google looking at related ultrasound images after the appointment, I think that all the tech was asking was if I'd had one in the past since it might have explained a particular finding. I haven't, and the finding was benign, so there's nothing to worry about. Except that in between when she said it and when I got back to my computer and did my research, I took two minutes to look it up on my phone, and learned that it's usually an in-office procedure that is performed without sedation even though some women find it painful. This was enough to send me into a total tailspin. It's hard for me to articulate how upset I was even reading about women's experiences with endometrial biopsy; as I write this today, just getting the link for the sentence above I lost about twenty minutes reading comments and holding back tears. And this is for a procedure with which I have absolutely no connection! The problem is that I know someday, someone will recommend that I do have an endometrial biopsy - or a hysterosalpingogram, or a dilation and curettage, or any number of other gyn procedures that are invasive and painful up to and including another fresh IVF cycle - and I will just want to die.
Wanting to die when you hear that other people - who, let's recall, are not you - have had or are going to have painful gyn procedures is a bit extreme. I don't have any actual thought of suicide (shudder), I just have this idea in my head that experiencing more trauma between my legs would be so terrible that it seems incompatible with life as I know it. And that's not right, I know it isn't. Most of the time I feel fine - really, overall things are going well, and it's springtime and I'm wearing the sundresses I couldn't fit into last year and my baby has incredibly kissable cheeks - but I'm concerned that something so relatively minor could send me off the rails. Concerned, and angry, and ashamed, and all of the feelings that I struggled with last year. Clearly they're not just in the past.
Thursday, April 18, 2013
Wishing and Hoping and Pumping and Nursing
So you know how a few months ago I was all "breastfeeding rocks! It's totally easy! My kid is growing like a champ!" Sounds pretty smug, huh? Yeah. About that.
Little O is doing great - really, he's a delightful child and it's a joy to be with him - but it turns out that he's not exactly growing like a weed. He's growing like a... houseplant. A plant that actually, when you touch the soil, does feel kind of dry to the touch. And now that you think about it, when was the last time it had a new flower? And, oh G-d, I'm comparing my baby to a houseplant! The exact thing you're supposed to be able to keep alive before you have kids!
Basically, our little man's weight slipped from the 50th percentile at birth to the 25th at 4 months and the 6th at nearly 6 months. That is not good. That isn't terrible - he's still generally very healthy and happy - but it is not, shall we say, ideal. In fact, it kiiiiiiind of fits the definition of the whole "failure to thrive" thing. Spoiler alert, this appears to have a happy ending, but I think my reliance on breastfeeding was to blame.
In the very early days after O's birth, we did do a little bit of supplementing with formula because my milk was so slow to come in. But by two weeks or so, it was all breastmilk all the time. He started growing out of his clothes at an alarming rate and I was even pumping a little extra milk each morning to put in the freezer. This lasted up until I went back to work, at which point I began pumping twice a day and giving him that milk at daycare in a bottle - still pretty easy. Until, at his 4-month checkup, the pediatrician mentioned that he had fallen from the 50th percentile on the growth chart to the 25th. She and I talked about how he was still exclusively breastfed, how the growth charts are not as accurate for many breastfed babies, how he was doing so well overall that she wasn't concerned. Still, I was worried enough that I looked up whether my milk supply (estimated at about 25 oz. per day) might be inadequate. No, said the experts. Breastfed babies need about the same amount of milk from 1-6 months, and after that their need should even start to gradually decrease because they get more solids in their diet.
All the same, I figured that more must be better, so I bought some disgusting tea and some fenugreek pills and tried to change up my pumping routine a little. I saw an increase of about an extra ounce per day in what I was able to pump while at work, but nothing dramatic. Honestly, I didn't expect big changes - my breasts only have so much milk-producing tissue, and there's only so much time I can realistically put towards pumping. And after all, if O needed more milk from me, he would be requesting it by nursing more on the nights and weekends, right? And then my supply would increase as a result?
Yeah, not so much. We had to bring him in to the pediatrician unexpectedly right before he turned 6 months old, and I was horrified to see where he now showed up on the growth chart. We immediately started giving him more milk - a full 30 oz. of formula and breastmilk every day at daycare, plus as much nursing as possible in the mornings and evenings. A week later, I could tell that he was a much heavier baby. And a week after that, he clocked in at the 22nd percentile, so I'm very relieved and feel like we're back on track.
I feel terrible that my baby was deprived of what were clearly necessary calories for so long. As his mom, I feel like I should have noticed that something was amiss before it reached this point. But I also have to say, what the hell, breastfeeding researchers? Is my kid just the statistical outlier for whom the steady diet of 25 oz. of breastmilk actually wasn't enough? He doesn't seem to have any actual feeding problems, and the fact that he gained weight so quickly once he was getting more food suggests to me that it really was an issue of volume. And I hate pumping, mostly because of the aforementioned D-MER, plus I really hated drinking that lactation tea, and now I feel annoyed that I've been doing all of this for nothing. I mean, I know it's not nothing - I'm glad that O is getting some breastmilk every day, and so is our pediatrician - but I do feel a tiny bit misled about how easy and natural this process would be. And in terms of breastfeeding not going perfectly, I know I'm in good company.
Little O is doing great - really, he's a delightful child and it's a joy to be with him - but it turns out that he's not exactly growing like a weed. He's growing like a... houseplant. A plant that actually, when you touch the soil, does feel kind of dry to the touch. And now that you think about it, when was the last time it had a new flower? And, oh G-d, I'm comparing my baby to a houseplant! The exact thing you're supposed to be able to keep alive before you have kids!
Basically, our little man's weight slipped from the 50th percentile at birth to the 25th at 4 months and the 6th at nearly 6 months. That is not good. That isn't terrible - he's still generally very healthy and happy - but it is not, shall we say, ideal. In fact, it kiiiiiiind of fits the definition of the whole "failure to thrive" thing. Spoiler alert, this appears to have a happy ending, but I think my reliance on breastfeeding was to blame.
In the very early days after O's birth, we did do a little bit of supplementing with formula because my milk was so slow to come in. But by two weeks or so, it was all breastmilk all the time. He started growing out of his clothes at an alarming rate and I was even pumping a little extra milk each morning to put in the freezer. This lasted up until I went back to work, at which point I began pumping twice a day and giving him that milk at daycare in a bottle - still pretty easy. Until, at his 4-month checkup, the pediatrician mentioned that he had fallen from the 50th percentile on the growth chart to the 25th. She and I talked about how he was still exclusively breastfed, how the growth charts are not as accurate for many breastfed babies, how he was doing so well overall that she wasn't concerned. Still, I was worried enough that I looked up whether my milk supply (estimated at about 25 oz. per day) might be inadequate. No, said the experts. Breastfed babies need about the same amount of milk from 1-6 months, and after that their need should even start to gradually decrease because they get more solids in their diet.
All the same, I figured that more must be better, so I bought some disgusting tea and some fenugreek pills and tried to change up my pumping routine a little. I saw an increase of about an extra ounce per day in what I was able to pump while at work, but nothing dramatic. Honestly, I didn't expect big changes - my breasts only have so much milk-producing tissue, and there's only so much time I can realistically put towards pumping. And after all, if O needed more milk from me, he would be requesting it by nursing more on the nights and weekends, right? And then my supply would increase as a result?
Yeah, not so much. We had to bring him in to the pediatrician unexpectedly right before he turned 6 months old, and I was horrified to see where he now showed up on the growth chart. We immediately started giving him more milk - a full 30 oz. of formula and breastmilk every day at daycare, plus as much nursing as possible in the mornings and evenings. A week later, I could tell that he was a much heavier baby. And a week after that, he clocked in at the 22nd percentile, so I'm very relieved and feel like we're back on track.
I feel terrible that my baby was deprived of what were clearly necessary calories for so long. As his mom, I feel like I should have noticed that something was amiss before it reached this point. But I also have to say, what the hell, breastfeeding researchers? Is my kid just the statistical outlier for whom the steady diet of 25 oz. of breastmilk actually wasn't enough? He doesn't seem to have any actual feeding problems, and the fact that he gained weight so quickly once he was getting more food suggests to me that it really was an issue of volume. And I hate pumping, mostly because of the aforementioned D-MER, plus I really hated drinking that lactation tea, and now I feel annoyed that I've been doing all of this for nothing. I mean, I know it's not nothing - I'm glad that O is getting some breastmilk every day, and so is our pediatrician - but I do feel a tiny bit misled about how easy and natural this process would be. And in terms of breastfeeding not going perfectly, I know I'm in good company.
Monday, March 18, 2013
Some Highly Unoriginal Thoughts on Working and Motherhood
I’m back to work. I’ve been back to work for some time,
actually, and while it has not gone perfectly at least we've
maintained a functional home and family while we’ve managed the transition. I
do work full time, a little more than 9-5 Monday-Friday, and O is in full time
daycare as a result. I like his daycare quite a bit - at times I have more
confidence in their ability to care for him than in my own parenting skills (seriously, these
people are educated in early childhood development, know all the words to “The
Wheels on the Bus,” actually seem to enjoy the album of kids’ songs that appears
to be playing on a loop and makes me want to attack the stereo with something pointy, etc.), and at the moment the plan is to continue this
arrangement indefinitely.
It’s a good setup, all things considered. There’s just one
problem: it has no built-in redundancy or failsafes. This doesn’t sit well with
me – I’m the person who enjoys having NASA-level control over logistics. And
boy, have those logistics gotten more complicated since we had a baby: I will take this car here and you will take
that one there so you can pick up this other person but do not park in that
lot, park in this other one, because your car has the stroller in the back and
mine has the car seat base and the diaper bag and on and on and on….
For instance, our daycare routine has only one arrangement
where it really works: I wake up at 6 AM, I take care of the cat and the dog
and breakfast and packing a lunch and pumping some breastmilk and, oh right,
the baby also needs to be changed and fed. I try to arrive at daycare right
as they’re opening the infant room in the morning, then hightail it to the
office; at 5 PM, I finish up whatever I’m working on to rush back to the car
and do it all in reverse. If I forget one single chore, or I leave one tiny
item out of my pumping bag, it all falls apart. It feels like a minor miracle
that on most days, our household functions as well as it does. And it’s to the
eternal credit of our extended support staff – my wonderful husband in
particular, plus our friends and neighbors – that we’ve navigated hurdles like
O’s first cold (actually, make that his first five colds) and several late
night and early morning meetings for my job.
Here’s the thing: I’m actually really happy at the moment.
Yes, I’m exhausted, and yes, most days are some degree of stressful. But most
days are also pretty successful. (And let’s not forget that in stark contrast
to the last year, I’m not wildly hormonal while also trying to process some huge
life changes.) But the same personality traits that make me love the NASA-esque
organization stuff – and that make me love my job – are the ones that keep me
up at night wondering what we will do in the future.
This arrangement will work at most until O is ready to start
kindergarten, so what, another four years? My own mother didn’t work when I was
young and I treasure the memories of meeting up with her after school. There’s
also a practical component to having an adult in the household who doesn’t work,
or who works part time; my vision of O’s future doesn’t include the frantic
must-get-all-chores-done-on-the-weekend pattern we’ve fallen into so far. I
want him to have adventures and opportunities to volunteer and time to explore
music and sports and art that we can’t provide at our family’s current rate of
speed. It seems incomprehensible that I won’t be available to offer him the
same kind of care that my mother offered me, but it also seems incomprehensible
that there could be a day in the not-so-distant future that I would leave the
workforce with no plans to return. And what
if we have another child?!?
Bear in mind, I don’t think I could have written anything
less original if I had tried. I could probably hyperlink every single word in
this post to other sites where women (and not a few men) are also debating the
balance between work and parenting. These are not unique, or unanticipated,
concerns or fears. But they are real ones.
And they all center on the same thought that keeps popping up when I’m
puzzling over this in the middle of the night, or stuck in traffic, or packing
up my pump for the millionth time: what’s best for me personally might not be
what’s best for my family. For now. I think?