Clueless

Today's ultrasound left me even more confused and clueless than the last one.  My estrogen has gone down from 191 to 79, but there's still not so much as a spot or a cramp happening.  Even so, my lining managed to shrink from 9mm to 6mm.  I don't get it.  Physically I feel fantastic but I can't even enjoy it because it means something is really wrong.  I need to be bleeding (which means hurting) so we can get this show on the road!

The endometriomas (if that is indeed what they are) have all gotten smaller - 2.7, 2.2, and 1.2 cm.  Good, right?   But the antral follicle count also got smaller - 5 today, compared to 8 last Tuesday.  This has me worried.  Tuesday my doctor told me that because I had 8 antral follicles, that would be the upper limit of eggs we could possibly get, assuming I even get to try.  Today I didn't get to talk to the doctor, but the nurse told me antral follicles "go in and out of you" and can change day by day.    Any chance the number can go UP from here?  If not, is there any point to this?  That's what I get to agonize about until my next appointment on Monday.

[Note: My belly looks exactly like this!  Except I have multiple surgical scars and bruises from injections.  Plus I have stretch marks I wouldn't trade for anything!]

A Shocking Development

I've been dying to write a post saying I've got good news for a change and I was hoping today would be such a day. For the last two weeks, I've been feeling pretty great. We had a nice little vacation to visit family. Also we've been on lots of fun family outings nearby lately thanks to unusually warm and wonderful weather here.

It's totally off-topic, but this is pretty funny (must have some humor because the rest of this post sucks):



The best thing about the last few weeks is that I've had hardly any pain at all. I certainly took this as a good sign. I was finally able to get excited about IVF #2, which would feature much higher stim doses and Lovenox from transfer. I felt these would be two big improvements over last cycle. I dared to be a little optimistic. Stupid me. I should know better by now.

I've been on Lupron for 10 days and took my last pill Wednesday of last week. But nothing happened. No bleeding. No spotting. It's quite bizarre that after years of desperately hoping my period wouldn't come, I am now desperately hoping that it will.

By yesterday I knew that something was very wrong, so I went into today's ultrasound with dread in my heart. The endometrioma is still there, same size, but has now been joined by what appear to be TWO MORE endometriomas. One ovary. Three endometriomas. *sob* The antral follicle count is eight, which seems pretty dismal. Last time there were eleven. But it is completelly irrelevant at this point because obviously I can't move forward. I have to bleed first, and there's no sign of it happening. Also my estrogen is too high (192 - should be under 50). My doctor called and said to stay on 20 units of Lupron and come back on Friday. IF I bleed and get the estrogen down, I might still be able to proceed, though not with much optimism. If not, this appears to be the end of the road for me.

Financially we cannot proceed with treatment after January 1, 2011. Months ago we paid for a three try cost-sharing plan under which we get our money back if we don't end up with a baby. Try #1 failed, try #2 could fit it this year but is now in jeopardy, and time constraints make it impossible for there to be a #3. The plan we're on covers the actual IVF but not the drugs or monitoring, which easily total $7000 per cycle without insurance. Right now we're fine because we have great coverage, but as of January 1 the COBRA plan we're using for infertility will no longer provide any coverage. No coverage is available through hubby's new employer. In just days we lost the hope of a third try and also quite possibly a second. Without the IVF, we have NO hope.

I am so grateful for my two living children. Without them I could not get up in the mornings. Ending my family with burying two babies, though, has left gaping wounds. It has caused such destruction in all aspects of life that some days I wonder if hubby and I will be able to keep our little truncated family intact. The person that my husband married died in 2007 and I am a very poor substitute.

I fought SO hard to have this chance. Dodged bullet after bullet . . . the stupid counselor, unemployment, and horrible insurance just to name a few. Next week I turn 35 - the dreaded fertility drop-off. What a heartbreaking plunge it might be. It can't end this way. It just can't.

The Devil Inside

The year that Jeremiah and Miles died, 2007, I felt like I'd been run over by a truck.  For the last few years I feel like I'm getting whacked in the head repeatedly with a 2 x 4.  I get hit by bad news followed by more bad news followed by even more bad news.  It's better than being hit by a truck, but can't I get a break? 

Last Friday was my ultrasound to check the status of my evil twin cysts.  I went into it knowing I probably would not get great news (I've had a lot of pain the last few days - that's a bad sign) but I didn't expect to get hit with horrible news either.  That's what I got though, and I'm still reeling from the blow.

One cyst is resolving and is now 1.5 cm compared to 3.5 cm three weeks ago.  OK that part's good, but wait for it . . . The other diabolical cyst remains 3.5 cm and my doctor thinks it is an endometrioma.  If so, then the only way to get rid of it is surgery, which she strongly discourages.  She recommends proceeding with IVF anyway and she will try to work around it.  The cyst is likely to have a negative effect on follicle production.  I only got 6 mature eggs with my recent cyst-free IVF and just two embryos made it to transfer.  I don't feel very hopeful about my prospects with yet another handicap on top of all my other crippling handicaps.

Regardless of whether I proceed with IVF or not, one thing is certain - I will continue to face a lot of pain in my future.  What can I do but plow ahead as long as there's any hope of obtaining great joy to go along with that pain?  So I'm off The Pill for a few days and then will start back up and head into another long Lupron IVF cycle.  IF this all goes off according to plan [laughs bitterly] then stimulation meds would begin in early November, with retrieval right around my 35th birthday.

If It's Not One Thing, It's Your Mother

Things are starting to move along again. I now have dates for the next IVF cycle, which is exciting and completely terrifying. All the appointments and down time will be more difficult to juggle this time around. My hubby is back to work and can't help out much. Also, I have to drive my kids to their school in another district (3x a day since my son is full-day and daughter is half-day) which adds up to 1 1/2 hours of driving time each day. We have no family in the area to help out. Add in all the trips to the clinic (in the opposite direction of the school, of course) and it gets a bit messy.

I was very pleased to learn that my 24-year-old single brother can come stay with us and would arrive just when this cycle gets seriously underway. He would be a great help. There's just one problem. My mother is threatening to come out here with him for a visit. It looks like she would be here during the stimulation phase of the cycle. I am less than pleased about this and here is why. I want to "just relax" as much as possible this cycle, but how can I with my mother in my house? I've suggested she come in the spring instead, but with my brother driving out it's a free ticket for her come now. And I really want my brother here. Grrrrrr.

I have endeavored to keep my parents in the dark regarded our attempts at family building. For me, not telling is great, but I'd rather avoid outright lying. Is it because I have impressively high morals? Well, I can't lie to you - NO. It's because a brain that functions this poorly can't possibly remember all the fabrications and sanitized versions of the truth required to be a convincing liar. While it's possible to keep the IVF secret even with her here, I'd still have to deal with a barrage of criticism about my parenting, poor participation at church, and LOTS more I'm sure. It's not a situation conducive to relaxation and I hate the idea of having to put up with it! Being on powerful hormone drugs during my mother's visit may be a recipe for disaster. It would be better to be on antidepressants or perhaps in a drug-induced coma.

Blog Noir

Thanks to everyone who stuck around to read and comment during my ongoing blog noir period. A blog noir is defined as a "black blog" with bleak subject matter and a somber, downbeat tone. It's a genre employing heavy shadows and patterns of darkness, marked by a mood of pessimism and fatalism. Like film noir, it emphasizes cynical attitudes and sexual motivations. Ha ha! Just kidding about that last bit. I have no sexual motivations at all, as my poor hubby can attest!

What a week it's been since I found out IVF #1 is a failure. The bloody hell of Endometriosis + Hyperhydrosis = Disgusting. And it necessitates frequent wardrobe changes. That, combined with being forced to act in the real world as if nothing is wrong, makes me feel like an actress in a dark drama. I am not a thespian, so surely my performance is unconvincing!

I wish I could bust out of this dark period, but it's proving very difficult. More than a week after my negative test, I still have not heard from my doctor or anyone at the clinic regarding a plan for another IVF cycle. I've called every day for the past three days and gotten no response. How annoying do I have to be, people? I started taking The Pill again since I'm sure that's what they'd tell me if they ever bothered to call me back. Why don't they? Now I'm all worried again about getting kicked out of the cost-sharing program. Being on this program reduces financial anxiety and instead increases anxiety about getting kicked out due to "poor response" or "low yield of embryos". Aaarrggh!! Also, the perinatology clinic was supposed to call me back about setting up a consult. I called them twice already and haven't heard back from them yet, either. I'm so frustrated!

It's not all shadows and darkness around here. We all went to a free concert this week (KT Tunstall) and will go the State Fair tomorrow. I have an adorable new neice who arrived safely almost two weeks past her due date (way to worry your aunt, Kaiya!). Hubby started his new job last week and will get a paycheck next week - yes, an actual paycheck! It'll be the first one we've seen since April, so a celebration is in order.

Strike One

Forgive me for going incommunicado this past week. I have been too depressed for words. On Thursday of last week, just five days after my embryo transfer, a Sense of Impending Doom descended and would not disperse no matter what I did. It was far too early to tell whether the IVF had worked or not, yet somehow I knew that my little embryos had died. It's finally official with today's beta.

When Jeremiah died, I felt death come for him but dismissed the feeling as silly paranoia. When Miles died I knew it but didn't want to believe it. When I called the clinic they were very dismissive of my worries, but a few days later my worst fear was confirmed. Even with my last loss - a very early loss cruelly termed a "chemical" pregnancy - I felt the same unshakeable and crushing darkness suddenly descend just before I got the beta results showing I was pregnant. It's a macabre sixth sense. Have I developed such an intimate relationship with death as to feel its cold hand accutely even when it comes to snatch something so tiny as my embryos?

I feel like Death has me in, well, a death grip. It stalks and kills any small hopes I try to cling to. It makes me despair of ever escaping this darkness. It follows me wherever I go. It leaves me dark shadows where laughing children should have been.

Since my doctor is gone this week, there was no discussion of how to proceed from here. I suppose the plan is to plow ahead and do IVF two more times. Sure, maybe I could actually get pregnant, but then what? It's hard to see much hope in this. I feel possessed by death such that every new life that tries to grow in me is already infected with death before it even has a chance to begin.

Stim Day 6

I had planned to go to a lake with some friends today, but instead I am so depressed I don't want to leave the house. Today was my first ultrasound since starting stims. I have only two - yes TWO - follicles (14 and 10 mm)and my lining is only at 3. The nurses were not impressed with this. Two days ago after bloodwork results came back low, the clinic called and said to up my Follistim dose from 100 to 225 and Lupron went down from five units to two. Now they're jacking the Follistim up to 300 but I wonder if it's too late to do me any good.

Just a couple of days ago I was talking to a friend and saying how I've been unusually happy the last few days because I felt like there was some HOPE. I said being happy and hopeful is nice but also very scary for me because it seems like every time I have any happiness, a severe beating is sure to follow. I try to be positive, but sometimes the cost for going there just feels too high. 

The nurse said we'll check again on Friday and then decide whether to cancel or plow ahead anyway. The most depressing thing is that this counts as one of our three tries for the cost-sharing program even if we don't have a retrieval. Other people in the program who are lucky enough to have two responsive ovaries get three fresh cycles and up to three frozen cycles. Looks like I may only get two cycles for the same amount of money, assuming I don't get kicked out of the program altogether for being a poor responder!

When I got my IVF protocol I was surprised at the stim dosages. It seemed low to me for IVF and I said so at the time. I get frustrated because this clinic seems to be too darned conservative for my tastes. I'm usually pretty conservative myself, but I want liberal amounts of drugs!! I'd rather deal with hyperstimulation than a try that doesn't seem like a try at all!

What If This Is As Good As It Gets?

What if this is as good as it gets? This is a terrifying thought, especially after yesterday's follow-up visit with the counselor at the fertility clinic. I was expecting to clear this last hurdle and move on to IVF. Instead she says she needs to meet with a committee consisting of doctors and another counselor to decide if it's "ethical" for us to proceed because my levels of depression and worry are above the norm. Duh. Who among us could endure such an abnormal period of pain and loss and still maintain a normal level of cheerfulness and optimism?

My future is in the hands of people who I feel do not have a complete understanding of the situation. I'm so distraught over this! What to do? Perhaps send very clear and concise letter for their consideration?

The counselor waited until the very end of the hour to drop this bomb on us. I had only a few minutes to make my case for proceeding and although I believe it was well-reasoned and well-made, I do not believe she truly listened or understood.

I explained that waiting is the very reason for most of the worry and depression for the past couple of years! It's been 2 1/2 years since we started "trying" again. In that time we've tried for 13 cycles - 6 natural cycles followed by 7 treatment cycles (Clomid, then Follistim). For the other 1 1/2 years I've been on The Pill waiting - waiting for appointments, waiting for tests, and mostly waiting for cysts to resolve. I've spent ten of those waiting months in constant pain because of large cysts, which has led to anxiety about losing my only ovary and with it any chance we may have to complete our family. It could happen anytime - I want to use it before I lose it! I feel I am waiting away both the potential life of a child who could complete our family and my own life. Additionally, all this extremely stressful waiting adversely effects my ability to fully enjoy the life and family I do have.

The months spent trying have been much easier to cope with than the months spent waiting. It is frightening to think that this last chance could be snatched away after I've invested so much blood and treasure in seeing this through to the end. At least when I'm able to try, I am moving closer to the final resolution of this problem. All the stresses involved with infertility treatment are relatively easy to deal with compared to the paralysis of waiting. Win or lose, I need closure so I can put down the burden of infertility and move on!!! Waiting means more aging (I'm 35 in November) and thus more expense ($3K more), vastly more out-of-pocket expense if we don't end up with great insurance, more cysts, more pain, and more possibility of losing my ovary altogether and ending up with a lifetime of regrets. Waiting adds up to more stress, not less!

I need to know I've tried everything I can - whether I end up with a baby or not. Especially since painful endometriosis and cysts mean that I face a lot of pain in my future and very possibly also drastic and destructive treatments. I cannot imagine being able to cope with the pain, depression, sterility, and nasty side effects of more surgeries (hysterectomy? oophorectomy?) or harsh drugs (early menopause with Lupron?) unless I first exhaust all possibilities for completing my family. Pregnancy could give me a baby AND put endometriosis in remission! This is a no-brainer!

Also it would be very helpful if we could at least get the drugs for the first cycle and if necessary aspirate my current small cyst while we still have stellar insurance that covers all of this! Hubby has four job interviews this week (YAY!) but once he gets another job we may end up with no infertility coverage (BOO!).

Their decision about my life will be announced on June 18. I think this will be the most difficult 2 week wait I have ever faced.

The Weight of It All

Currently the rest of the family is at church and I am home alone, having fallen ill last night. This is, I think, a great blessing for certain members of our congregation because if ONE MORE PERSON comes up to me and tells me that our latest misfortune is all part of God's Beautiful Plan and that He Really Loves Us, that person had better run away FAST.



We are now struggling under the strain of five major problems, any one of which is enough to put immense strain on a marriage and family. We of course have them all at once, and each problem added to the load not only adds its own weight, but impacts all the other problems so as to make them even more burdensome and difficult to resolve. All of these problems are interrelated - to solve just one of them would set off a positive chain reaction and bring our family some desperately needed relief. But instead, more keeps getting added on, making it even more difficult to resolve anything.

Hubby is now unemployed. We have no income or insurance. To add insult to serious injury, it remains unclear exactly why he was fired, as he's never committed what any sane professional would consider a firable offense. I won't go into the list of petty offenses he's been accused of, but they're laughable! All we know for sure is that his boss is a jerk of the highest order and although it's good for hubby to be out of that toxic environment, he needs another job to go to! We had high hopes right up until Friday that it wouldn't come to this. It seemed plausible even in the midst of this major recession that hubby could transition into another job within the company - it's gigantic and he has lots of connections. But now that he's been fired and is no longer an insider in the company it's all a lot more complicated.

On top of that, we were just six weeks away from being able to try IVF and there's no way to do it without income and insurance. Has anyone out there been desperate and insane enough to do IVF while on unemployment and COBRA insurance?

Although IVF may not result in a baby, trying it would mean being able to say "We tried everything we could". It would mean being able to put the issue of infertility aside because there's just nowhere else to go with it. And even though I know the pain will never really go away, it would be easier to bear without "what ifs" and regrets that we didn't go all the way. We have only six months left to make it happen before I turn 35, after which it gets a lot more expensive and success rates decline sharply.

The lack of insurance means we likewise cannot deal with my recurrent cysts and pain problems - if we could figure that out I suspect we may get at that darn infertility problem, too! Being in pain so much of the time makes me depressed, irritable, impatient, and unable to think clearly. I simply can't function in a normal way, which makes me feel like a horrible failure as a wife and mother, which in turn makes me even more depressed.

And of course there are other big problems not mentioned here, besides the normal every day stuff. You can just imagine what a fun couple hubby and I are right now. The passion. The romance. Not. We've weathered storms together before, but how can we ever survive and rebuild ourselves when they're this bad, this long, and this frequent? I love hubby and I know he loves me, but we need something good to happen for us right now.

Beware the Ides of March

There are still four days left of The Wait as I finish up my last cycle on Follistim. I fully expect the results to be negative thanks to the relentless attack endo has been waging for months near my one and only tube and ovary. That's the only place that ever hurts, and boy does it hurt. Also the sperm count was pretty rotten at IUI this time around. A few hours after the IUI, during church, I could swear I felt an egg popping out! So I seduced hubby there in the pew. We ditched the kids at church and I made him take me home immediately to make another (hopefully better) deposit before he had to rush back to church to teach a lesson. I'm a desperate woman.

I've been passing the time researching IVF and hoping to find out before Beta Day whether it's a viable option for us. I needed to know if bad news on Friday means The End For Good or just The End For Now. After much research and many phone calls, I was shocked - shocked, I tell you - to get accepted for the Cost Sharing Program at my clinic despite my losses and one ovary. Things were moving along at breathtaking speed so that we could get started next month! This might really work! Of course it might also be an even more painful and expensive way to fail, but I was cautiously optimistic. Recent years have turned me into a big pessimist and it felt good to have a little optimism, even just the small cautious type. Yes, I dared feel a little bit happy about the possibility of Something Good finally happening. That, of course, is the cue for Something Terrible to occur.

Hubby got fired! At this point, it is unclear exactly why he's fired or exactly when he's cut off as he's expected to work until the replacement is brought on. Since he works for a very large corporation, there's some hope (though not a whole lot in this economy) of finding work within the company by using the many contacts he's been cultivating in anticipation of this very event. But for now we are in survival mode (wait - isn't that where we've been for years already?!) unable to plan on ANYTHING - not income, not insurance, not spring break in exotic Illinois, and certainly not stressful and expensive IVF. No future plans of any kind. Now there's even more stress piled on when we already felt stressed nearly to the breaking point.

On second thought, I don't think I'm a pessimist at all. I'm just a realist - and life really, really sucks right now. Oh, things could be worse. We know that because they've been getting progressively worse for years now. But . . . at least we have some savings and aren't tethered to a house, which we're absolutely giddy about. And we're all reasonably healthy with no deadly diseases - just endo which sometimes makes me wish I were dead. See, I can look on the bright side. I'm a pessimistically optimistic realist.