Thursday, February 28, 2008

Note to Self

Dear Body,

Big Giant Head here - I think we have a few things to talk about. First off, let me say, I think you have done a fairly decent job the last soon to be forty years. Oh sure, a few blips here and there and some quirks that I have come to look at as eccentricities - but in general, your approval rating has improved and remained somewhat steady for some time now. However, there is one area I feel that we have had more than a little trouble with. Now, I am keeping heart out of this - I know she can be rather sentimental and emotional and harbors some resentments and disappointments still. I will just say - she's been through a lot - great joys as well as great pain and deserves a bit of understanding and consideration on the rest of our parts. No, the main thing I wanted to discuss with you at this time was our dropping the ball in the reproductive area. Yes - that would be you ovaries and uterus, and to a slightly lesser extent, cervix. Now - don't go pointing fingers and start name calling. Uterus, you do have a valid point - that you could have done your job much better if not for a bit of laziness on part of the ovaries. Yes - there are two of them and you would think that since there are twice as many of them, they could get their acts together without a bunch of argument. Ovaries - I will allow that you finally did get around to working the way you should - however, your timing sucks. I mean - you two didn't start figuring things out until uterus started heading into retirement. Yes, you did manage to produce six lovely and wonderful children - for which I feel eternally blessed. I just wish it didn't have to take so much effort beyond what was reasonable and also the fact that when looking at our final stats - it took us on average two conceptions each time to produce one living child, not to mention an awful lot of medical intervention and ovary flogging. Yes - I know I said I was keeping heart out of this. Fact is people, seven miscarriages is physically difficult also, certainly a bit excessive. Notwithstanding that all those hormones, fertility drugs and medical procedures came with a lot of extra issues we would not have had to deal with also had you just all done your jobs properly. I treated you guys well too - no cigarettes, alcohol or extreme sports - a varied and healthy diet. I'm just saying. Okay, okay - we're not here to argue that I didn't know when to quit. Just keep in mind that if I did quit sooner - we probably would be hearing a lot more from heart on this matter and the Big Giant Head would be in a lot more therapy. Do you really want to head back down the extreme self-loathing road? Because I would really rather not. At any rate - what's done is done now. Yes, stomach - we all know how you dislike being ignored. Everyone - stomach wants us all to know how all the turmoil upsets her delicate constitution and sense of equilibrium. Stomach - you need to remember to continue working on the whole "food is fuel - not therapy" issue. Then maybe we could say goodbye to our unwelcome guests jello belly, cottage cheese butt and thunder thighs. You can quit rolling your eyes too bladder - this extremely co-dependent relationship you have going on with uterus is not healthy. Remember - uterus is going to be leaving us for sunnier climes soon and adhesions or no, you're just going to have to let go and move on. We still need you - liver and kidneys would be lost without you. Uterus - you did okay. You have been much abused and much maligned over the course of our time together. You definitely are in need of a long, long, long, long rest and it is coming soon - I promise. Remember guys, we are all in this together - sum of our parts, and all that blah blah yada yada stuff. Whining about how some of us are literally stuck together is not helpful, nor is blaming each other. We could still put another forty years in on this planet and it is easier if we all pull together and try to make things as good as possible for everyone involved. Remember what happened to gall bladder? I'm just saying.


Link to Letter to My Body project: Blogher Letter to My Body

Sunday, February 24, 2008

You Talk Too Much, My Ears Need a Rest

In a former life I was a deejay. My mother use to say this was the perfect career choice for me - getting paid to talk. After all, she always said "Julia could carry on a conversation with a rock!" One of my nicknames growing up was "Motor Mouth". I could talk about anything, anytime, anywhere with anyone for any length of time. Fast forward several years or so - Chatty Cathy runs into infertility and then recurrent pregnancy loss. Was she still talking?

Well - initially, I really didn't have any trouble talking about the fact that it was taking a little longer to get pg than we anticipated. Though - this was to a select few, namely my sister and sister in law. Ironically enough - both of them were pregnant at the time. I discussed temperature charting, seeing a doctor and taking Clomid. Talking about it wasn't something I could see not doing - this was my life, these were the things I was experiencing. In phone calls home - those were the answers to "how are you doing?". Then I began having miscarriages. At first I talked about those too - I needed love and support and so I talked about my losses. Though, I found to my dismay that I wasn't getting the response back that I expected or needed. Oftentimes I felt like I had to try and make everyone else feel better. They were uncomfortable and didn't know what to say or do. I can understand that - but if they were uncomfortable and unsure, then I was completely lost. Then came the day when the every 48 hours beta hcgs over 3 weeks begin to clearly show I was losing my third pregnancy and I "told", the response was "are you sure you were even pregnant?" At that point I was tired. Tired of looking for comfort and not getting it - of disappointing everyone else when I was so disappointed myself as well, and definitely tired of trying to make this whole miserable personal experience better for everybody when nothing was better for me. So, I stopped talking - as much. I didn't volunteer. If they asked - then I felt they should be prepared for what they got. I wasn't going to broach the subject anymore. I found my miscarriages a very lonely and isolating experience. Telling or not telling anyone didn't really change that result much.

My sister called me one day frustrated with her 2 toddlers and sick with her 3rd pregnancy. A pregnancy that was due within days of my due date for a baby I had been pregnant with 2 pregnancies prior. We had compared notes almost daily. When she began spotting - I was the one reassuring her. My pregnancy ended at 12 weeks. Her pregnancy went on and she delivered a HUGE 10 lb 4 oz baby the day after my now defunct due date. She called looking for sympathy and I snapped. She didn't get what she expected from me apparantly and next thing I know, our MOM is calling me and taking me to task for not being more sympathetic to my sister. Mom said "she is sick and tired and pregnant. It's hard running after little kids all day. Sometimes you just need a little chance to boo hoo a bit and have someone feel sorry for you and help you feel better. " I acknowledged that she was deserving of compassion and sympathy - but to go looking for it from the person who was still bleeding from her third miscarriage and who would love to need sympathy of that kind was not the best of ideas. I told her it hurt and while I was no longer pg and only running after one kid, I still needed a chance to boo hoo a bit too and have someone feel sorry for me and help ME feel better! Granted it wasn't one of my more mature exchanges - though it got the point across. However, I did decide something after this experience, when I spoke about the difficulties my husband and I were having in the procreation department, it was not going to be for purposes of having someone feel sorry for me and give me sympathy and comfort, it was going to be to educate them! Whatever gets you through the day - but yes, that's the mission I put myself on - miscarrying martyr. I have to admit it wasn't completely out of a desire to educate - some of it was to just be onery because I was flat out tired of trying to make everyone else feel better about my pain and make things easier for them. Now, I was not in the habit of talking about our personal issues with everyone - very close friend(s) and only family I felt particularly close to. Later on though - this changed, I started finding it was easier to talk about things with complete and absolute strangers.

After "accosting" a seatmate on an airplane flight to Phoenix and giving her my complete history and finding not only sympathy - but empathy, because she herself had struggled, I felt like I was onto something. Following my 5th miscarriage in 1998 I began looking for a support group. I knew I needed to be able to talk about my experiences and frustrations. I tried talking with my husband about things - but that only got me so far. My family and friends were out too as they had no frame of reference - they offered the best support they could, but it often fell short of what I really needed. I needed people who understood what I was going through because they had been through it themselves. When someone who has been there done that tells you it will get better - you have a tendency to give more credence to their words. Living in a very small rural town my options were rather limited- there were no real-life support groups in town. I had internet access at the public library, but only email at home. Researching the internet at the library I came across an email support group - Subsequent Pregnancy After a Loss (Spals). I had an outlet to talk and talk and talk and talk and talk - about everything, all of it! No one said "why do you keep doing this to yourself" or "to us"? No one offered useless advice. They didn't start squirming and try to rapidly change the subject when I said I was feeling upset that day because it was the due date for the baby I had just lost. Talking to strangers was "safe" and I could still retain a sense of anonymity. I didn't have to maintain a familial relationship with them and I could be completely open and honest about my feelings and not have to worry about saying something that would come back to bite me in the proverbial tushy later on over Thanksgiving dinner. (No more shame on you phone calls from mom!) I also didn't have to worry about anyone belittling my pain or saying "but it wasn't even a real baby!" when I began to give names to my angels as part of my healing process. Never once did I have to endure the words again "aren't you over that yet?"

Something else happened while I was talking to strangers - I was giving back what I was being given. A whole new avenue of healing opened up to me and I found that offering my understanding and support to other women who were also struggling in the way I had/was had some amazing effects. I was no longer feeling as alone or isolated as I once had - some of the bumps and craters felt a little less bumpy and deep. Eventually though - many of those strangers became some of my closest friends. That's kind of a funny thing to say because some of these close friends I have never even met in real life. For a long time I called it "cheap therapy", but now I call it comradeship - unmeasurable in worth. They were the ones who helped pick me up, dusted me off and gave me the courage to get back on the horse again if I wanted and let me spill a thousands tears when I fell off again - hard. I can only hope I was as helpful to those I encountered during my years on Spals as they were to me.

If I could go back and change whether I talked about it or not - I can't say I would keep things exactly the same - though I definitely would stick with the support group. That's the funny thing about hindsight - always 20/20 and I had to go with what I had at the time. I was feeling so vulnerable anyway - that opening myself up and verbalizing that vulnerability didn't seem like such a big step, for me anyway - since traditionally I've always been a talker. For someone else - it may only be just even more salt in a very raw, very deep wound. However, I saw it as a chance that someone might just say the right thing or offer the shoulder I desperately needed at that particular moment and I opened my mouth. Sometimes you have to ask the question before you get the answer.

And that is what I get for opening my big mouth . . .

Thursday, February 21, 2008

Love the One You're With

I have physical therapy twice a week for the foot I mangled in a car accident shortly before Christmas. I tell you - it is about the only "uninterupted" time I get and I actually get to read through a magazine or two, since most of the work on the foot and ankle I do sitting down. They have Entertainment, People, Cottage Living - all sorts of selections. I picked one up yesterday that had a big picture of Dolly Parton on the front and one of the story captions read "Can This Marriage Be Saved? She wants a baby . . ." The article essentially went on about a husband and wife who were trying to have a baby and facing difficulties, culminating in having to go to donor eggs for best chance at becoming pg. Wife became obsessed with it (like many of us do), husband feeling stressed by many other factors, including wife's obsessive behavior, job, a miscarriage, finances, etc. Wife upset with hubby because he won't talk about it and she does nothing but want to talk about it. Nothing out of the ordinary there - really, sounded pretty familiar to me. The part that got me the most though, is at the end when they check back in on the couple after the counselor gives her advice and they've had a while to work on things. This glib happy tone when the couple reported they had their dream child and everything was peachy now, everyone rides off into the proverbial sunny sunset. Okay - yes, having a child you desperately want can definitely make you happy - but be the only reason your marriage is saved? Because literally - that was how the closing lines read to me. I hope that there was more to it than that - but I truly felt a bit uncomfortable with this idea - a child being the only glue that could keep two people together.

Yes, our personal infertility struggles and certainly the recurrent losses put a definite strain on things. My husband and I grieved things so differently. In large part, I think that was due to the fact that the negatives month after month, and then the recurring miscarriages affected me on more levels in that they were not only an emotional disappointment, but a very intense physical experience as well. Not to say he wasn't upset and frustrated too - but by different point of view. He didn't feel the cramping or have the bleeding. He wasn't the one putting the thermometer in his mouth every morning and plotting a graph. I am in no way saying it was harder for me than it was for him - just that we had different angles that we were each coming from. He had his disappointment in not having the child we both wanted and in having that desire postponed time after time. He also had to see ME going through the physical aspects and my disappointment as well. I was so caught up in my experience - that sometimes I didn't see his experience and often resented him for it. He seemed to move on much quicker than I could. Other people's baby news didn't seem to upset him as much as it did me. He never seemed to want to listen when I needed to talk. It wasn't until years later that I found that he seemed to think that if I was talking, it was because I expected him to **fix** it. Get out his tools and bang things around and fix it. Because this was something he couldn't fix, he was frustrated. Each time I brought it up and he still couldn't fix it, the frustration just mounted and probably felt like I was blaming him in a sense for not taking care of it because I had to talk so much about it. Once we both got on the same page - I told him that I didn't need "to fix", I just needed "to listen", he seemed more open to letting me talk. Within reason. I learned from him that sometimes when it isn't productive to do so, talking constantly about something might only just make you crazier and if you couldn't do anything about it, why beat yourself up for something you can't do anything about? Hard. Hard, hard, hard. Gosh - is so much of our identity tied up in our reproductive organs or what? Because of some strange hormonal off-balance that I had nothing to do with and had probably been born with a predisposition towards, and certainly had no control over - I was starting to view myself as a failure. What I didn't see until my significant other pointed out to me during a particularly frustrating time, was that I was trying. Trying and succeeding are separate things, but also dependent upon each other. I could neither fail nor succeed if I didn't try first. Neither one would come to me without taking some kind of action. Of course, it took years of trying, failing and sometimes succeeding before this finally took hold and I begin to realize what he was talking about. I am a great theory person - but practical application trips me up every time! I waffled about how far we should go, when it was time to quit and give it up. He said whatever you decide. Ugh - that drove me crazy! Though - what he really was doing, was supporting me in whatever decision I made. He knew that I was the one giving myself injections every day and being examined constantly, etc. and wasn't going to force me to endure any hardship that I wasn't willing to endure myself - not even if it left him disappointed. Sometimes I could just kick myself when I realize that all those times I questioned how deep his love for me was and all along he was telling me and I didn't hear it. When the time did come that I knew I had given everything I could possibly give to this rather strange, physically and emotionally trying career of mine - I was able to quit on my own. He didn't make the decision to quit or forge on for me. Maybe that might seem a bit wishy-washy to some and him being incapable of making a decision, but he knew me well enough to know that if I didn't make that decision on my own, without his influence, I would never be content and constantly be second guessing the choice, probably for the rest of my life.

There was a point shortly after our second loss and in the midst of our third, that I found myself in a very deep depressive state. I went through the whole thing - why me, I must be a horrible person that this keeps happening to me; the drug addicts and prostitutes and teenagers in the back of their parent's cars and EVERYONE ELSE are doing this - why can't I? I also at one point tried to convince my husband that he would be better off without me - he deserved "better" than me, someone who could give him children. (Never mind the fact that I had already given him one child and was practically killing myself to give him more.) Even after I got pregnant again for the 5th time and actually made it far enough to deliver a live baby (albeit a very sick premature one) I still felt "unworthy" somehow. On the day that he drove me home from the hospital newly discharged with our daughter wired up still in the NICU, I asked him if he would be disappointed if we didn't have any more children. I was exhausted at this point - three miscarriages back to back, the depression, getting extremely ill, recovering from that to get pregnant, chasing a toddler, an abrupting Placenta Previa, a premature infant and hemorrhaging post csection was quite a bit to deal with. In retrospect, I know now that waiting a little longer to give me a chance to heal more would have probably been wiser. However, at the time - I was quite frankly obsessed. I thought the only way I was worth something and could be happy was if I was pregnant and had a baby. My life depended on it - my marriage did too. Rational? Reality? Not really. My husband's response was "Of course I would be disappointed (we had both wanted a large family), but I would understand." I had to ask "You wouldn't wish you had married someone else?" His response (after not swerving enough to avoid a nasty pothole that had me clutching my recently stapled together gut and yelping) was "why would I?" He honestly could not think of any reason why he would wish he had married someone else. The thing I find most ironic is that all those years that I wished he could just listen to me, I was guilty of the very same thing I was upset with him for - not listening!

Over the course of the various treatments, the pregnancies, the losses, the surgeries (csection and otherwise) - we grew. We began to see that our way wasn't the same way for the other person at times, and that was okay. We learned how to complement each other in our differences rather than clash over them. We learned not to expect things from the other that they couldn't give - because of personality or just plain different vantage point. Can that solely be attributed to having our dream child(ren)? I can't say for certain because our lives turned out that we do have children. I do believe though, that if we didn't believe the other was worth sticking around with, and working with - children or no, we might not have made it. He can still make me completely berserk sometimes and I am sure he doesn't always find me a picnic either - but at the end of the day he still comes home to me and I can't think of anyone else I'd rather wake up to.

So yes, I do think this marriage can be saved.

Tuesday, February 19, 2008

Browse at your own risk - Ignorance can definitely be bliss!

I gotta quit internet research. I am not finding anything even remotely comforting out there. I appreciate the comments and personal experiences people have sent me - I should have just stuck with you guys!

The drug websites say only about 26% of Lupron users reported severe side effects (read: had a very bad experience on it, lived to regret it, wanted to SUE the miserable wretches who invented the stupid drug, their dog and mother in law too). I think I have read every single one of them. I do have a theory about that though - if you had a really miserable experience, you would share right? You would want to complain long and loud. Probably more so than if you had a moderately so-so experience and things went the way they were supposed to, right? Entire blogs devoted to the nightmare of Lupron. So it probably just seems like there are a lot of nightmare stories about it out there - because those are the only people talking about it. Oh gee, if it helps me sleep at night - that's the theory I am going with!

Oh, and don't research hysterectomy and look at pictures relative to the topic. I don't get all queasy and pass out about stuff like that - but an endometriosis riddled uterus is not a pretty sight. Particularly when your overactive and internet research fueled imagination starts sticking those sights inside your own body.

But, I did find some good news on the 'net, some doctors are open to hysterectomy/tummy tuck combo surgeries. Dahling - it's the latest thing! So, I suppose when I enter that operating room, before I am gassed I can always just lay back with a smile and say "I'm ready for my extreme makeover now!"

Monday, February 18, 2008

Could You Spell That One More Time Please?

My doctor in St. Louis phoned this morning. She went over the ultrasound findings and report and she and other doctor agree that it looks like a large part of my monthly woes is due to a condition called Adenomyosis. Basically endometrial tissue that has grown into the uterine muscle along my scarline. Treatment for this can be hormonal manipulation. Oh fudge, I just can't seem to get away from hormonal manipulation. (slight pause for self pity - can't I ever do this thing right? Okay - I'm good now) I go on Lupron for several months. Fun fun fun. Or - of course, medically induced menopause. Again, she brought up another child issue - speak now or forever hold your peace. Yes, big swirl of emotions there. I am 40 years old and while another child wasn't completely on the horizon of possibilities - I wasn't ready to start facing menopause and absolute total end just yet. That is a wormy can of emotions that I need some time to work on. Particularly because hysterectomy thanks to my Bluterus/Bladderus is basically going to amount to me giving "birth" to my uterus via what would essentially be akin to another csection and a long complicated procedure in which we want to try and lose the "us" and retain the bladder.

I went with the Lupron option for now. I just need some relief for my present condition and more time.

Sunday, February 17, 2008

What If

I have spent much of my adult life dealing with "what if's". What if I don't get pg, what if this treatment doesn't work, what if I miscarry now that I am pg, and on and on . . . Makes you a little crazy sometimes trying to cope with all the things that might happen, let alone the things that actually do.

I visited my doctor in St. Louis last Friday. You see, my monthly cycles are rapidly turning into a month long nightmare. Without sharing TMI, let's just say - I have maybe one decent week a month and the rest I am either morphing into some psychotic female version of Mr. Hyde (I could make the Barber of Fleet Street look like a downright pleasant fellow) or taking up residence for a few days on end in the bathroom and living on Ibuprofen and Diet Cola. She agreed with me - what I put up with each month lately is a bit on the excessive side. We discussed, she examined and then sent me for an ultrasound with another doctor to rule out any ugly potential causes for the problem. Pretty much what I figured - we are trying a hormonal route first, since all my problems started with a hormonal issue and seem to still be rooted there. I understand this - no need to step up to the drastic unless drastic means are warranted and the rest of the less drastic has been exhausted or eliminated first. Plus, I was told that drastic means mean I need to be completely serious about being through having children. Well, I kind of thought I was. I mean, having another child just wasn't an option right, wanting to or no? This was a very interesting part of the visit. At my last csection, my bladder tore. I was seeing a different doc, a local one, with the idea that having the baby in town would somehow be more convenient than having the baby out of town a good 100 miles down the interstate from home, despite having already done just that on 3 occasions prior. Ahhhh, one of those decisions I will probably finish my days still second guessing. At any rate - the circumstances were such that all that scarring from the previous 5 sections and the endometriosis presented my delivering doctor with an odd predicament. Where there were once two organs, there is now one of a sort. So, I either have a Bluterus or a Bladderus - however you want to look at it, but there it is. One bladder fused completely and utterly to one uterus. My St. Louis doc was not impressed that the doctor who delivered my last baby let my bladder tear. She said she would have cut through it if she had to, particularly if there was a question of tearing - but at least then she would be in control of the damage. I don't think it was so much negligence on his part as more over confidence. I think he overestimated his superhuman abilities a bit and while was able to deliver the head and one shoulder without trouble, that last shoulder came out too fast and well - there you go, I end up with a catheter for nine days and very grateful at the end of it all that the plumbing still works adequately. He repaired it well enough. Throughout the entire pregnancy and definitely after this delivery, I was given the strong impression that having any more children would be a definite bad thing. (Now I have to question the intelligence of telling a woman who is already pg and facing a necessary csection, that it is dangerous and she shouldn't do it. Isn't that a bit like buying flood insurance after the basement is filled with water? Besides, I was already dealing with the usual litany of my own what ifs, so their added pronouncement of doom and gloom - soooooo not helpful) So, I tell you all this because not only did my StL doc think another child was not completely out of the question, if I wanted, but also the doctor who did my ultrasound and examined my female parts - particularly the Bluterus/Bladderus. Huh? Miss Julie say what?? So, is it a small town, male doc thing and the female doctors in the big city are more enlightened or smoking something or what? I have to admit, I hadn't given it any thought until they suggested it. I asked about the thinning scarline - isn't that a deal breaker right there? Small, slight chance it could be an issue - but they thought it would probably hold since it has through 6 and a lot of other abuse already. How about the Bluterus/Bladderus thing - issue there? C'mon, surely that was the trump card as I still would like to retain the ability to pee for the rest of my life. We know it's an issue - we go in with that in mind and fix it/take care of it. You don't say...?

It is a heady thing - to go from having to take fertility drugs to ovulate, living and dying by the numbers on the BBT, scheduling physical intimacy and the whole kit and caboodle of conception being an almost team sport complete with cheerleaders and syringes suddenly, one day to wake up and discover that without the drugs and "people" and scans and without sticking a glass tube in your mouth every morning or a needle in your gut, that you have conceived a baby. I spent years, years, wanting that so desperately - to be "normal". All my angels, my first four kids - thinking I was done because I no longer had insurance to cover even just my meds and then two babies, no drugs, no miscarriages, no drama. Once I got over the shock - I have to admit that having done it the normal way was pretty darn cool, and part of me definitely definitely wonders if I could still do it. Seriously - imagine that you just performed a perfect back triple somersault with a twist after spending more than a decade trying to do one. Would you stop there or keep doing it now that you had the hang of it? Of course, I do know there is considerably more at stake to consider other than just if I could do it again - but I went to the doctor's office for a solution to one problem and came away with a what if. What if. Which leads me to another thought - when is enough enough? I've been happy and goodness sakes grateful with what I have gotten long before I got here and long before this recent what if. I also get the sense that no matter how many children more I had, I would always feel like someone is missing - because, frankly my dear Scarlet, someone is and someone will always be missing and no matter how many perfect back triple somersaults with a twist I perform, I won't get them back - at least not in this lifetime.

And now (after spending the last few death defyingly long paragraphs pandering to my possibly misbegotten impression that people would even be remotely interested in any part of all that) I'm going to do what I use to do when I found myself plagued with incessant anxiety and fears over the what ifs. I'm going to refocus my attention back to what is.

Thursday, February 14, 2008

Happy Birthday and Happy Valentine's Day

Today my Valentine's gift from last year turns a year old. After years and years of not ovulating, fertility drugs just to conceive, several miscarriages and all the monitoring and blood draws, etc that came along with it - I had a nice little surprise, all 7 lbs 13 oz of him. For more to his story, see my companion blog "Desperate Mothering" and the post "Baby Love Handles".

Happy Birthday Valentine Man ~ Nathaniel Bryant 2/14/07

Monday, February 11, 2008

A Hard Day's Night

Since I find myself thinking about certain angels at certain times of the year more than at others (as do we all), it made more sense to me to make blog entries going by anniversary date rather than in chronological order. February 8th is the anniversary date for the loss of my 9th pregnancy and 6th miscarriage. This pregnancy differed from my other pregnancies and losses in many ways. I started up on Follistim this time around, since I had clearly become resistant to the Clomid. After 13 cycles of clomid at increasing doses and then finally Follistim, I conceived my 8th pregnancy and happily delivered a healthy baby, albeit a healthy baby with immature lungs, at 36 weeks. Since my endometriosis was becoming worse, my doctor recommended taking the minipill following delivery - not so much as birth control (since my annovulatory status kind of made contraception a moot point) but to try and help keep the endo in check. She knew we wanted at least one more baby and felt this would "buy us" some more time. I stopped the minipill in December of 2001 and started the Follistim conceiving that first month. The cycle was extremely painful. My ovaries usually ached pretty good midcycle whenever taking the Clomid or Follistim, often feeling like they had swollen to the size of grapefruits - heavy and painful. However, usually after ovulation, the aching would begin to subside. This time however, the ache never subsided and seemed to worsen almost daily. I have a bit of a theory that the minipill had left me with cysts going into the Follistim cycle leading to the problem, as I have only ever developed cysts when taking the pill. I never developed cysts on all the Clomid I took and not the time before or since that particular cycle when on Follistim. One day I woke up and began my usual daily routine and discovered I could not move for pain. I was trembling and hot and standing up straight was near impossible. Laying on my couch I called my doctor. She scheduled me for an ultrasound the following day - being that she was an almost 2 hour drive away for me, the next day was a better option. My lab tests had been beautiful so far - my beta hcgs were more than doubling, almost tripling - giving my doctor the impression that an ectopic pg was unlikely to be the source of my pain. My progesterone had been solidly in the lower 50's, and I had been taking Prometrium since a few days following ovulation. The next day I and a friend (because I was hurting enough that driving for that long a distance was an iffy proposition) headed to St. Louis for my scan. I went to the office that had handled my dosing and follicle scans for the ultrasound. (As a side note - any readers who live in the St. Louis area, Becky Kubala and staff at Parints are wonderful - they took amazing care of me and also helped to match me with a wonderful doctor. Anyone needing infertility care would be be well taken care of by them.) The tech doing my scan found that I had multiple cysts on my ovaries and free fluid indicating some of them had ruptured - these were very likely the cause of much of my pain. In addition, she found evidence of bleeding in my uterus as well as two gestational sacs. I have to admit a slight thrill at the thought of twins! This would be the first time I had conceived multiples! This thrill was shortlived as she also noted that she saw a "something" between my right ovary and uterus that had her thinking I also had a tubal pregnancy - a very painful and very not good situation. At 5 and a half weeks, it was difficult to say exactly what the something was for sure. She phoned my doctor's office and explained her findings and told me I was to head over there right away. I arrived at Dr. Matuszek's office and was ushered in immediately. She also did an ultrasound and I could see by her downward turned mouth she was not happy with what she was seeing. She didn't want to start methothrexate (a chemotherapy drug often used in treatment of ectopic pregnancies as a non-surgical means of ending a dangerous and potentially life threatening pregnancy - you simply cannot grow a baby in a tiny straw) in hopes of possibly making something of the uterine pg(s), however, the other something bore careful scrutiny. I was sent home with instructions to avoid salt, drink lots of fluids, avoid lifting and lay down a lot and return in a week for another scan. I was also given strict instructions as to what to do should my pain return, worsen or I began bleeding. I lasted at home about 4 days. The pain from the ovarian cysts was subsiding, but the pain from the ectopic pregnancy was escalating. I had also begun spotting and bleeding - brown, old blood off and on. I called my doctor and I could hear in her voice, though she never said it, that this pregnancy was not going to be continuing much further - her focus was more on taking care of me and making sure I was okay. I took some Advil, a warm bath - all hoping to alleviate the pain I was feeling, hoping that it was just more ovarian cysts. The Advil and bath did nothing to help. The pain in my right side crackled across my entire abdomen - hot and branching out like lightning. I read the book that I had bought when I had become pregnant for the very first time "What to Expect When You're Expecting" on ectopic pregnancies. I had never looked in the book again after my first few miscarriages - most of the information just didn't seem to apply to me anymore. Plus the happy nothing's wrong tone didn't help calm my fears and anxieties when I was pregnant with subsequent pregnancies, all going well or not. However, their information for ectopic pregnancies - while brief, was spot on and described precisely what I was feeling. I could no longer hope that things were going to turn out any other way then the direction they were clearly headed in. I still held on to the hope that maybe we could take care of the tubal pregnancy surgically and the two little intrauterine sacs we saw on u/s the week before might grow and flourish. I bargained, I pleaded and prayed - I made arrangements for my children to be watched by a friend and my husband and I began the long silent drive to the hospital in St. Louis.

We arrived at the hospital a bit after 11 in the evening. I could barely walk, hunched over because the pain made it impossible to stand upright. I was shaky and tears often worked their way down my face. I blamed it on the pain - but much of it was tears of disappointment and feelings of failure. Because of the late hour I had to go in through the Emergency Room. We sat for a brief moment in the waiting area watching The Tonight Show. They were doing their JayWalking bit and the nurse hustled us out about the time I began yelling at the tv "Francis Scott Key you bleeping moron! What kind of American doesn't know Francis Scott Key wrote the national anthem??!!" It's funny the things you remember. Part of our waiting involved an ultrasound technician being called in to verify what was going on in the part of my body I had started referring to as the Bermuda Triangle - things go in but don't come out. That particular ultrasound will go down as the most painful ultrasound I have ever had and the less than friendly tech didn't help to make matters much better. She found that I was bleeding out both ends of my tube. My right fallopian tube was bulging and ready to burst. Of the two sacs in my uterus that I held such hopes for - one was almost completely gone, the other was smaller and losing definition. No sign of anything ever having developed in either of them - no fetal pole, no yolk sac - nothing. I turned my face to the wall while she finished her scan - not wanting to see the nothing that was left of this pregnancy on the monitor.

My doctor came in while they were prepping me for the laparoscopy. While signing the forms I tried to ignore the terminology - the fact that I was signing to terminate my pregnancy. She knew my heart was breaking - we had walked this path together before, good and bad outcomes. At a later follow up visit she confided to me that she had had a tubal pregnancy herself many years before. She knew how badly I had wanted that pregnancy. She promised me she would do her utmost to try and save the tube, especially since as I reminded her - the right side was my "good" side. The side that always produced the best follicles and the one ovary that actually was in the right position. (Endometriosis has left scarring and adhesions that have pulled my uterus to the left and also "bound up" my left ovary pulling it out of position, high and back, making it difficult for a released egg to make it into the fallopian tube, let alone be seen during a scan. Every scan with a new tech always brings the same question "Do you have a left ovary?" and then when I say I do, they go hunting for it - always a treat when they go poking and prodding for that thing. Sorry - I think you just found my liver there . . .)

She saved the tube. By the time I got in there it began rupturing which is why I started feeling better shortly after the scan - the tube had finally given. That and blood loss added to an almost euphoric sense of physical "relief". I ended up having a laparoscopy for the tubal and a d&c for the intrauterine mess. The embryo that had implanted itself in my tube had been healthy and viable - just had the misfortunate circumstance in being in an impossible spot. Just a cm or two further and we could have been okay. The two in my uterus, while capable of finding the right spot - just didn't have the wherewithal to make something of themselves. I woke up in recovery and immediately wished to not be conscious. I hurt everywhere and opening my eyes was something I was not ready to face just yet. When I was ready to open them, the recovery room nurse smiled and said cheerily "Oh! You're awake!" She was pleasant, I wanted to die. She also seemed to think that I was ready to go home a mere 2 hours after surgery. I let her get me ready to go - I wanted to go home, I wanted to sleep, I didn't care. Unfortunately, this set in motion even more fun events. I knew I couldn't sit upright for the hour and 45 minute ride home, so I crawled into the back of our minivan. We think that when I did this - one or two of the veins that had been cauterized in my naval incision for the laparoscopy slipped free and began free bleeding, which I did not notice at first. The nurse gave me one of the warm hospital blankets to help keep me warm in the car for the ride home. We left a little after 4 in the morning, surgery had been at 1:30am. Almost an hour into the trip I became a bit more lucid and began to sit up a bit and noticed to my shock that I was wet literally from the waist down. I was covered in blood and looking at my incision, I could see bleeding through the bandage and literally coursing down my abdomen. Lots of bleeding kind of snaps you into a bit of clarity. At this point I told my husband what was happening and he asked me what I wanted to do. Okay - sure, ask the lady who just had surgery and is bleeding to death in the back of our minivan what SHE wants to do. Find a hospital - any hospital. So we stopped at a hospital about 45 minutes from the hospital we had just come from and about an hour from home. Now they were confused - they were confused why I was bleeding, confused why I was on the road, confused why I had a hospital blanket wadded up and pressed to my stomach like a pressure bandage, confused why I had just had surgery and was not still in a hospital somewhere else. They called my doctor who was confused as to why I was not still in her hospital. (Somewhere sometime I think the cheery recovery room nurse got a bit of an earful and a "what were you thinking?" lecture). Then we sat there staring at my belly, literally contemplating my naval when I realized that gee, I really don't feel so great and I am kind of hot and dizzzzyyyyy . . . . I remember the ER doc's head looking up from my bellybutton to me , putting both of his hands on my shoulders and then I am staring at the ceiling.

I got a stitch in my bellybutton. I asked for my blanket before they sent us home. Matt said it was all bloody and they threw it away. I told him I wanted the blanket. "Honey, it's in the trash." I don't care - I want that blanket. We are arguing over the blanket. Finally, I appeal to his frugal side, "honey, you know they charged us $250 bucks for that blanket, because nothing is free at the hospital, so we are keeping it and getting our money's worth!" I made him get the nurse to fish the blanket out of the trash. They both told me it was hopeless and probably never would come clean. I didn't care - I had to have that blanket. That scratchy, worn blanket that had probably covered a hundred prior patients and now was soaked with my blood. I had to have that blanket because when I first opened my eyes after my babies were gone - it was the only warmth I felt. I washed it, I bleached it - it came clean. I still have it.

This year, as a fitting homage I suppose, my period started on the 6th anniversary of my surgery. I wrapped myself up in the blanket with a hot water bottle. (and a lot of ibuprofen)

At the end of my posts about my angels I put their names - I need to explain this name. Because this had been a multiples pregnancy I wanted something to recognize that, but I was stumped. A good friend from Spals helped me come up with a solution - Matthew Thomas. Thomas means "twins" and Matthew means "Friend of Thomas". I was able to recognize all three. I'll talk about naming my angels later. I will say for now though - that giving them names was a big part of healing for me.

Angel Matthew Thomas 2/2002

Tuesday, February 5, 2008

A Funny Thing Happened on the Way to the Doctor . . .

Seemed like such a simple task - provide child one with a sibling. Now that we had things figured out - or so we thought, getting pregnant again should not be so difficult, right? Well - getting pregnant again actually wasn't so hard this time - one cycle of clomid was all it took and I was staring at my second positive pregnancy test just when child one turned one. Mostly I was concerned I would be horribly sick again, the first week started off only mildly queasy. The second week after the positive test was the same. Halfway into the third week - disaster struck. No queasiness, but a low crampy ache that wouldn't let up. You know that miscarriages happen - you know that sometimes a pregnancy starts and doesn't end the right way. I had friends who had miscarriages. Somehow I guess I figured that having to take fertility drugs to conceive somehow gave me a pass on this - couldn't have more bad luck right? I knew that most women would experience at least one miscarriage over the course of their life - still this did not prepare me. Knowing it happens and then having to face it happening to you are two different things. There are no handbooks, no "how to" guides for having and coping with the loss of a pregnancy. Any of the help given by your health care provider will follow more along the lines of practical care meant to safeguard you from any complications. My personal opinion is - the miscarriage is already a complication. My doctor at the time was not completely convinced I was having a miscarriage initially. (Well if he was going to see me before 10 weeks he would have been able to verify it for himself) At the office he essentially told me to treat it like a "hard period" and not worry about it. Gave me the usual list of watch-for's and sent me on my way. At home I was stumped. I had no idea how to act, how to feel, how to grieve or even if I should/could grieve. So, being a bit of a pragmatist, I decided that these things happen and life goes on and I would simply get pregnant again (ha ha - right; though at the time, I thought I had all the answers or at least knew the "trick"). I had my one statistical miscarriage and so it wouldn't happen again. There was however, an ache in my heart - the tiniest handprint of something that I couldn't quite place a finger on and I could never fully wipe away.

Angel Zach 6/95