Thursday, September 10, 2009
Life After Infertility Treatments Fail
September 10, 2009
Life After Infertility Treatments Fail
By Lisa Belkin
There is a quiet moment in the film Julie & Julia when Julia Child gets the news that her sister is pregnant. With a quiet sob, Meryl Streep makes us understand how deeply Julia wanted a child, and how painful it was to accept that she would never have one.
Today she could have seen specialists, gone through invasive treatments and tests, spent tens of thousands of dollars, and become consumed by what moment it was on the calendar. She might well have had her child. Or she might have been one of those for whom nothing works, and for whom all the new possibilities serve merely to add weight to the feeling of failure.
Once upon a time being childless was simply the mysterious hand dealt by nature. Now it is a decision to stop, because there is always one more something to try. Shelagh Little knows that decision well. In a guest post today she writes a primer — not about how to get pregnant, but about how to move on when you don’t.
A ROADMAP FOR A LIFE WITHOUT CHILDREN
By SHELAGH LITTLE
Almost two years ago, I resolved to accept that I would never have children. I was 37 and had just learned my IVF procedure had failed. Our eight-year struggle with infertility included six rounds of artificial insemination, clomid pills, hormone injections, a surgery, and countless (and sometimes painful) diagnostic procedures. Every new test and treatment carried with it the hope that this time, it would work. What I had to show for it all: a picture of three sad little clumps of cells - the embryos that didn’t implant – and no real explanation of why I couldn’t get pregnant.
Every woman facing infertility has to decide when she’s had enough, when she has reached her ethical, emotional, and/or financial edge. My sense of self-efficacy dictated that if I researched all the options, sought support from the right professionals and followed their instructions, I’d get what I wanted. I did all of these things to the point of obsession, but our options were running out. Another round of IVF? Egg donor? A surrogate? We really couldn’t afford any more treatments and we were starting to feel queasy about the risks associated with all the drugs and technology. But my main reason for calling it quits was that I was tired of feeling frustrated and desperate. I needed to stop trying so I could get back to living.
Since then, I’ve been reflective about my infertility journey and its aftermath. Infertility is defined as the inability to conceive after a year or more of unprotected intercourse. It isn’t a disability, because you don’t technically need to have children to live a healthy life. For me, infertility is more like a low-level, lifelong bio-psychosocial syndrome. My physical inability to produce children has emotional and social consequences that I struggle with, at least to some extent, every day. Here are some of its manifestations.
Family-lessness. I had thought a child would transform us from a happy couple into a proud family with a house full of love. This was important to me, because I unfortunately do not come from a loving, intact family. And the fact is that family remains the single biggest organizing principle of mainstream life. Just a walk through my neighborhood tells the story. After work, young couples chat on lawns while their children ride bikes and draw on the sidewalk with colored chalk. My husband and I are sidelined, left to feel aberrant. Infertility is a unique kind of loneliness.
Gender dysphoria. Motherhood is still central to womanhood, the magical thing that women’s bodies do. Motherhood is also socially rewarded and is a sort of proxy for femininity. In candid moments, mothers tell you that they liked being pregnant because of all the attention they got. As an infertile, I feel oddly unsexed, especially when I look at pregnant women. I cannot do that (be pregnant), so am I still really a woman? (That’s a hypothetical.)
Friend funk. It is challenging being friends with people who have children. Understandably, people who are devoting their lives to raising children want to talk about their children – the search for a good preschool, where to take a family vacation, how to install a car seat. I don’t relate, and I have nothing to add. At times, being subjected to exhaustive conversations about other people’s kids leaves me so alienated I feel the urge to get up and walk out of the room.
Meaning quest. I thought a child would imbue my life with a new sense of focus and purpose. Infertility has created a meaning vacuum. It has ignited in me a renewed sense of obligation to unearth my passions and work towards goals. Mothers often describe the experience of giving birth as the most incredible thing they ever experienced, holding their infant for the first time as transcendent, and raising children as “the toughest job you’ll ever love.” I feel the need to create comparable peak experiences and ongoing projects. There is a pressure to craft a life well lived, even though I will never raise children.
“Why don’t you just adopt?” is something I have often heard when I confide my infertility in others. What’s most interesting about that to me is that those same people usually have biological children and have never thought for one minute about adopting. After not being able to have children for so long, I am ambivalent about adoption and parenthood in general. I admire people who have adopted children, but it is not for me.
I have searched in vain for that room full of fierce, feminist ex-infertiles talking about the wonderful things they had accomplished with all the money, creativity and energy they would have expended on a child. Sadly I discovered there is no roadmap for creating a full life without children. It’s a make-it-up-as-you-go situation.
It is tempting at times to define myself in opposition to parenthood. I think about leaving our family-oriented neighborhood to live with hip urbanites downtown. I also sometimes must resist the urge to flaunt my free time and fanciful self-indulgences to my sleep-deprived, harried parent friends. I still have not quite figured out how to incorporate other people’s children in my life (something I’m told is good to do).
Writing this, I am for the first time acknowledging my own strength and courage in living with infertility and finally making the decision to be childfree. Emboldened, I ask of those blessed with their own children to consider the following: Your family is your good fortune. Not everyone else is as lucky. Please be self-aware about when, to whom, how and especially how much you talk about your children. Just as it is not flattering to be openly bitter about infertility, nor is it becoming to be boastful about one’s parental pride.
If you ask me if I have children and I tell you I can’t, a simple “I’m sorry” will do – there is no need for follow up questions or pat advice or jokes. Please also don’t blanch or act like I said something inappropriately confessional. With the amount of explicit and extremely intimate information shared freely these days, there is no need for infertility stigma.
To others who are actively experiencing the anguish of infertility, the good news is it does get better. Since the day I made my decision to stop trying, I have never looked back. My husband and I have survived what is probably one of the biggest challenges we will ever face as a couple and have created a bond and an intimacy that frankly would probably not be possible if we had a child to raise. And if I bring the right attitude, every day presents new opportunities to have a happy, fulfilling life as a woman who is not a mother.
Wednesday, December 24, 2008
Merry Christmas Eve
She started the meds yesterday - this morning the lump was about the same as yesterday - maybe a teeny bit smaller.
Monday, December 22, 2008
What is it with December and lumps?
Monday, November 10, 2008
Monday, October 13, 2008
Oxford Journal Study
http://humrep.oxfordjournals.org/cgi/content/full/20/7/1944
Difficulty with acceptance of infertility
For many women, the point of acceptance of childlessness had not been reached, which hindered the decision-making process. ‘I am always going to have regrets that we can't have a child, but you have to accept what you have got rather than what you haven't. You have to make alternative plans and they don't include children’. However, for some, ‘many questions remain unanswered’, and ‘many issues unresolved’. Similar sentiments were voiced by others: ‘Facing up to the fact that you will never have your own child is very traumatic and in a sense we feel forced into the situation of being childless’, or: ‘I think it's still happening [acceptance], it's such a long process, I mean we stopped treatment in May of last year, and I still can't accept it’. Although the decision to end treatment had been made, these women were generally less positive, not only with their inability to accept biological childlessness, but of their decision. Those who went on to adopt or have less invasive treatment such as donor insemination were more likely to feel more positive about their future, and no longer viewed themselves as ‘childless’: ‘I must admit the adoption changed things for us dramatically. We had another focus and we were probably ready to move on earlier than those couples for whom adoption is not an option’. One woman was more cautious about adoption and viewed the process as socially less acceptable; ‘We were too old for adoption, and anyway, we were not prepared to take on a child who may well be psychologically damaged’.
Stress associated with IVF
A common response from women was related to the stress caused by IVF treatment, and the process of decision-making often exacerbated this. However, relief of the cyclical process of ‘treatment and stress’ was evident once the final decision to end treatment was made. One interviewee indicated that: ‘the IVF for me was an extremely traumatic experience and I just wanted it all to end’, and went on to clarify that it was her life that she wanted to end. Others reported similar feelings of depression: ‘The GP started me on antidepressants. I just wasn't coping with it all’, or: ‘In a way, I felt quite depressed, not in the clinical sense, but I felt so low, so down, in a way I had never felt before. That lasted for about two months and I decided then that I never wanted to feel like that again’.
Unrealistic expectations of treatment
Making the final decision to end treatment was influenced by unrealistic expectations of success and the inability to cope with treatment failure: ‘I suppose we were naïve in thinking that IVF would work first time’. Many women were initially hopeful, but eventually succumbed to despair after repeated unsuccessful cycles of IVF: ‘In the beginning there was so much hope, I mean it was something positive we could do, and now ... there's no purpose in life anymore, no relationship left. What's the point?’. Many felt that continuing treatment was their only means of suppressing feelings of negativity and pessimism. Respondents appeared to go through a period of critical self-reflection in arriving at the decision to end treatment: ‘We never thought we would still be here [having IVF] three years on, but in time your attitudes change and you are faced with dilemmas you never thought possible’.
Pressure from media and society
Prior to making the final decision to end treatment, many women had searched the Internet for information about the possibility of new treatment options: ‘I searched every web-site you could imagine. If anything, it made me feel better about my decision in that thousands of people were going through the same experience’. However, some felt that medical staff appeared uncomfortable when faced with the results of their own literature search: ‘You never seemed to approve of the information we downloaded from the Internet, but we had to explore all options before making the final decision, leaving nothing undone I suppose’. In essence, the media proved to be another source of pressure on couples who experienced a social obligation to try new technology in order to reproduce: ‘It's the whole extended family thing. It's almost like a fashion accessory—sorry to be so flippant, but you're not accepted in the same circles or the same way if you don't have kids’. One couple commented on the apparent effect of ‘monthly media headlines’ that created indecision with regards ending treatment by suggesting that significant breakthroughs were imminent: ‘You read about it [in the media] all the time, third time lucky for IVF couple or someone who gets pregnant after adopting a baby’.
Social and professional opportunity costs
Most women had spent the majority of their thirties going through investigations and treatment resulting in a sense of ‘missed opportunities’, which eventually influenced their decision to end treatment: ‘I was so drained throughout treatment and never felt sociable. We had a great social life before IVF and a part of me wanted that back so badly’. Many were unable or unwilling to share their concerns and anxieties with close family and friends, distancing themselves from potential support networks. One woman captured her own experience: ‘One of my closest friends said that I had changed since starting IVF when I called off lunch yet again. ... I didn't feel sociable, but deep down I missed the social interaction. I suppose I was afraid that someone would appear with a baby or to say that they were pregnant, and I just couldn't cope with that. I had to stop [treatment]’ Some women actually described feelings of relief at the end of treatment, with one woman explaining in detail how she could now move on with her life: ‘I wanted my life back, and I remember feeling great sadness at the thought of never being pregnant, more than that, never having a child, but also a huge relief that I wouldn't have to go through another IVF cycle and the disappointment and grief that it brings’ Being released from the incredible stressful cycle of events that surround IVF treatment was expressed by another respondent: ‘I'm still grieving for the child I never had, for my fertility, but I feel a sense of relief that I don't have to go through the emotional upheaval of another cycle and that we can now move on’. For many, infertility and assisted conception-related issues created a sense of ‘life on hold’.
Physical and emotional pressure exerted on the couples' relationship
Financial pressure and the need to balance the conflicting demands of IVF, with those of an everyday social and professional life, caused frequent conflict within the marital relationship. ‘We had spent over $22,080 on IVF; not that we grudged the money; I mean you can't put a price on a child, but it added to the stress of it all’. In addition, whether to have another cycle of treatment or not created further conflict: ‘We just couldn't agree on whether we should have another cycle of IVF. Neither of us would admit we had really had enough, as you don't want to be the one who admits defeat’ Many commented on physical and emotional pressure that IVF exerted on their marriage/relationship, often resulting in periods of depression: ‘He [her husband] would have carried on, but I couldn't have coped with another disappointment, the anger and especially the depression—I just couldn't do it anymore’. As time went by, repeated failure lead to despair and isolation: ‘The constant stress and disappointment was incredible. Looking back, I would have risked my marriage for it all [a child/children]’
Sunday, October 12, 2008
Can I take a message?
Walked in the house to messages blinking on voicemail:
1. My aunt. Calling to see how we were doing. Sending us good thoughts.
2. My grandmother. Just thinking about us, wants to know if we got home ok. She loves us.
3. My mother-in-law. Hopes we’re doing alright, give her a call when we feel like talking.
4. My mother. Since you guys are home early, we should go to this arts and crafts show.
Really. Either you get it or you don’t.
Saturday, October 11, 2008
Pardon me while I go see a movie.
Thursday was a weird fucked up day. In the hours after my doctor's appointment, I was trying to kill time between checking into our hotel and waiting on my lab work to come back. So I took myself to a movie. I was entirely too distracted for much of anything, but I can usually zone out in front of a movie. I was at the theatre an hour before they even opened, and once they did I simply asked for a ticket to their earliest showing, provided it wasn't scary. Eagle Eye. Pretty good by the way. Or at least in an action-junky-no-need-to-think-things-through kind of way.
I picked a seat right beside the door and sat there with my cell phone in both my hands - turned on vibrate, and with the little flashy light thingy on the outside turned on. A visual, a tactile. It rang just as the opening credits started.
I jumped up and was out of the theatre standing in the hallway when I heard my doctor’s voice: “16. Dammit.” It took me a split second to decipher.
16. My LH levels. They can’t go above 12 before you trigger. 4 points. Four fucking points stood between a possible successful cycle and a cancelled cycle. He asked me if I wanted to come back in for more bloodwork “We could test again – you never know…maybe the lab made a mistake…maybe the levels went back down.” Great. This is my doctor grasping at straws.
“I’m not coming back in. I’m going to see a movie.” This was my response to my doctor telling me our 5th awful attempt at having a baby was over. “I’m going to see a movie.” This was my response to hearing I will never carry a child, we will never have biological children. “I’m going to see a movie.” It’s hilariously fucked up. There has got to be some really telling statement in there about…well…I don’t even know – reality TV watchers? People voting McCain? Women defeated by infertility treatments? All of which – very fucked up.
After our diagnosis, I knew it was going to be a rough journey, but I also knew it would work. You think if you try hard enough, if you do it enough times – eventually it has to. But unfortunately, that’s not the case. We could do round after round and still end up here. We’re not willing to live our lives like this forever. But I’m having a hard time admitting The IB has won. If she were an actual person I’d kick the crap out of her.
There’s a part of me that isn’t sure I’m ending this without regret. In fact, I can’t say 100% that this is the end (and for that reason). If we had just made it through the retrieval this time and it didn’t work, I’d be able to live with that a little easier. But you know…canceling a cycle because I can’t count. Well, that’s fucking stupid.
I don’t know. We’ve decided to give it a few months, see how we feel. See how the idea of calling this the end still sits.
In the meantime…I’m out of here. Maybe I’ll go see a movie.
Thursday, October 9, 2008
And.....it's over. Again.
Well my bloodwork came back - LH at 16.
Cycle fucking cancelled....surged before the goddamn trigger. Again. And again. And again.
We had already arranged for a hotel so I could be close to the clinic. We decided to keep the room, do some sightseeing, catch up with old friends and do some major drinking.
Wednesday, October 8, 2008
Third Appointment (Cycle Day 11)
LH came back at 6.6, so the ligering question is - is that the level prior to the LH jump, or the drop before the big surge. Bloodwork in the morning will tell.
Doctor wants to retrieve on Saturday morning - they're getting me in for the earliest appointment.
Tomorrow morning I do bloodwork/ultrasound at 10am. Then I'm checking into a hotel and waiting for the clinic to call me in for a second round of bloodwork in the afternoon. Trigger will be tomorrow night.
I'm nervous that tomorrow morning's bloodwork will show I surged today. I've had a good deal of uncomfortableness in my abdomen today....usually I don't feel that until after the trigger.
So...Shit!...or Yay! I don't know which yet.
J gets in tomorrow - I'll be so relieved when he's here.
Tuesday, October 7, 2008
Second Appointment (Cycle Day 10)
Just talked to the clinic, I'll be going in everyday for bloodwork/ultrasounds from here on out. Since I've surged so quickly in the past, they want to keep an close eye on me.
J arrives on Thursday...thank god.
Sunday, October 5, 2008
First Appointment (Cycle Day 8)
My grandfather drove me up for the appointment. He was big-and-bad on the ride up saying he wanted to talk to the doctor and see if there was anything more we (we?) can do to make this work. Was kind of terrified on the trip there - the last thing I need is my grandfather screwing up my relationship with my doctor (he's a 6 foot 2, bear of a 70+ year old man who doesn't understand a thing about IVF, but wants to see it work for us). When we pulled into the parking lot, he decided to wait in the car instead - wouldn't even come sit in the waiting room.
On the drive back, we got behind the only goddamn vehicle in the state of VA with the license plate: "MLFHNTR." After a few minutes of trying to figure out what it said, my grandfather turns to me: "What kind of hunter?" Christ alive...what is up with the fucking universerse? "No idea, Pop."
Coming through town, he turned off at the cemetery. A visit to my uncle's grave. I hadn't been since he died 6 years ago. We only stayed for a few minutes and as we left, he leaned down and patted the ground. My grandmother says he goes at least twice a week and she's never seen him leave without patting his grave. Absolutely breaks my heart.
Thursday, October 2, 2008
Home sweet home
And tonight's the VP debate...I can't wait to hear what nutty thing comes out of Palin's mouth next.
Wednesday, October 1, 2008
The perfect storm
1. My morning started with my internet going down. I called my provider, those bastards tell me they can have me back online...in 48 hours. Yeah, I work from home. I'm then informed that if I run a business from my house, that I'm supposed to have BUSINESS internet...not personal internet. I don't own a business, I don't run a business from my home....I telecommute. Hell, I didn't even know I could GET business internet until today. Apparently biz internet has a 4-hour service turnaround....it's also more than double what I currently pay. Annoying.
2. The internet going down wouldn't normally be a big deal. But oh wait...I dropped my laptop off at the repair shop 2 days ago. For the first time in 2.5 years I am not mobile, and my internet goes on the fritz...seriously.
3. This is the first time in 2 months that I've had a crisis client going on at work. I had a 150 page report due out at 8am. Yeah...didn't make my deadline.
And of course all this is the perfect time to go wrong considering the economy is in the shitter and I'm absolutely convinced that my company's going to start layoffs at any moment. Sweet...look at me being late with deadlines....
All that leads me up to Sunday. That's my first IVF appointment for this round (did I mention LAST round?). I need to be mobile for my trip...and I haven't even heard back from the computer repair jackasses.
I'm typing all this from borrowed internet (Panera) on a borrowed laptop. This is seriously sad stuff. Even sadder? I'll be here at Panera at 6:30am when they open to start tomorrow's report. woohoo.
Monday, September 15, 2008
Virginia Legislation: Fertility Coverage (SB 631)
http://www.petitiononline.com/060200/petition.html
S.B. 631: a bill to require health insurers, health maintenance organizations, and corporations providing accident and sickness subscription contracts to provide coverage for the treatment of infertility.
The bill now moves to the Special Advisory Commission on Mandated Health Insurance Benefits. This is a joint commission that also includes Governor-appointed private citizens. We anticipate testifying before the Commission in the fall of 2008.
Monday, August 18, 2008
Huh, so summer vacation's almost over....
Huh. Yeah...was trying not to think about that. August's almost over.
The question has kind of had me in a daze all day. IVF. Again. Soon.
J and I have had a great summer. The alcohol, the camping, the chillin' on the porch, the alcohol...oh it has been a good, good mental vacation. One that I'm not sure I'm ready to give up yet. I'm not at all ready to dive back into fertility clinics.
J and I have had a few short conversations about where we both are with treatments. I want to start grad school, he is talking about doing some traveling. We haven't made any huge decisions - but we both seem to be on the slower end of getting this machine cranked up again. We have at least another month before we can get started (2 trips coming up)....so we'll see......
Can't believe the summer is over.....
Friday, July 18, 2008
Who says golf can't be fun?
A friend of ours has been begging J to go golfing with him for a while now. He’s not a golfer, but is going on a golf trip at the end of the month, so want to go with J to get some pointers. So, last night, this other couple and the two of us went to a golf course - actually my first experience on a REAL course. Had fun, but we didn't get started until 6:30 and we were slow because J is the only golfer and he had to limp along with us 3 really bad golfers. By 9pm we were only on the 7th hole (really, really slow). And of course at 9pm it is dark. The guys were finishing up on the green and then we were calling it quits...you couldn't see a thing.
Us girls were sitting in the golf carts waiting on them. We were bored....just chillin' in the dark. Oh, and we may have had a few beers. So as soon as they finished, the boys yelled for us to drive around and pick them up so we could head to the club house. Well, as I said, we were bored. So to spice things up a bit we decided to race - you know - golf carts that go like 11mph. I also mentioned it was dark? And the beers? Oh, and I can't see in the dark and I didn't have my glasses on? Just trying to paint you the picture here.
So we start off racing.
I maxed out around 11mph, my competitor’s cart was a tad bit faster at 11.5mph. We were speed demons. All of a sudden my friend’s slightly faster cart shoots off to the right. I probably should've wondered why, but with the wind blowing through my hair at 11mph the only thing on my mind was the open road and this 4-wheeled hog beneath me. Suddenly I find myself about a foot away from a 5 foot drop into the sand trap. Dude. I didn't even have time to hit the brake. In I went - nose first of the golf cart - golf clubs flying everywhere - me hanging on to the steering wheel, legs flapping in the breeze, driving like a bat out of hell at 11mph. In the instant it happened all I could think was - holy mother, I'm going to flip ass over end. Luckily (amazingly), all 4 wheels ended up on the ground. My next concern (when I abruptly went from 11mph to 3mph and left a face print on that stupid plastic windshield) was - oh crap, I'm sinking in the sand. I floored it (we're back up to 7mph now) and shot out of the trap leaving a trail of clubs in my wake and a 2 foot deep rut in the trap.
The adrenaline kicked in as well as the "Oh my god I'm still alive" high hit and I couldn't stop laughing. Hysterically. Ok - I also kind of wanted to do it again. Meanwhile, my husband (who takes golf very seriously, just witnessed everything, and is NOT laughing), is now stomping towards me (with a putter) and is about .2 seconds from blowing up. I'm pretty sure I've never seen his face that red. Did I also mention that this Devil's Sand Trap is located directly in front of the clubhouse? And as we were the last ones out on the course, the only remaining employee is standing outside waiting on us to come in. So - according to my superbly ticked off husband - he has just witnessed the whole thing, and is no doubt banning J from the course for life. Which, I reminded him (and in hindsight probably wasn’t the best time for rationality), had to be a bit of an exaggeration because I couldn't see the sand trap in front of my face until I was riding the holy rails of terror. J did not find this amusing. But to further prove my point, when we checked in the carts, the guy didn't even notice the trail of sand our little cart was leaving behind.
All I can say is, J would not have liked the original plan. I was going to stick a brick on the gas pedal, throw myself into the other cart and just see where mine went.
Good thing we couldn't find a brick.
Monday, June 30, 2008
I know, it's been a while....
http://www.timesonline.co.uk/tol/life_and_style/health/article4232383.ece
Wednesday, June 11, 2008
Diving In
We can't seem to get anything remodeled around here because everytime you turn around - a pipe busts, the basement's got water issues, the gutter's rotting off the house. There's a very long list of crap that the previous owners did not attend to and if we don't get them taken care of soon, they're going to end up being very expensive projects.
So, we're diving in....
Tuesday, June 10, 2008
Wine anyone?
If ever meet the people that used to live here, I'm beating their asses. Seriously, we've had at lest 5 pipes bust, we stil have a non-working bathroom, we have a gutter that is rotting off the house, we have mold (or at least we did), we had to waterproof the basement...at least 10 other very expensive things that I'm too brain-damanged from the heat to remember...and now....THE FURNACE. The estimate for the cheap one: $3,000. I will not be buying the cheap one.
I'm told the current duct-tape temporary situation is only going to give us enough time to shop for a new one - a month at most. And I have my doubts about that. With both systems cranking like a mother, it has taken 3 hours for the temp to come down 2 degrees in this house. It's still hot as hell, only now I owe some AC dudes like $400 for their work this morning.
And J's "new" car? After TWO DAYS of driving it - it needs to go to the garage. It doesn't start very well and it has just cut off a few times.
The Jeep's check-engine light is on - THAT needs to go to the garage.
And IVF IS EXPENSIVE (I feel like screaming that out the window right now!)!!
!#$%?^!#%&#$*!#$&!#$!*!#$*&(*%
All this crap is cutting into my wine habit and it's really starting to piss me off.
Saturday, June 7, 2008
Again with the babies everywhere....
"Oh. Kid's 4 days old. Yeah. We're over it."
WTF?
My brother. 23 years old. Two kids.
I'll never understand how this shit works.