Tuesday, January 30, 2018

Knowedge v. Experience v. Humility

While I was in the hospital with Quinn, we saw multiple different MFMs, as they changed rotation once a week. There was Dr. Hart, Dr. Jacbos (same MFM I saw when we lost the twins), Dr. Contag, and Dr. Yamamura. Yamamura was amazing, and kind, and the only one who didn’t try to de-personalize Quinn. Contag was the second to last we saw. He was the one who wanted to send me home, despite the heavy ongoing bleeding, and the fact that I was dilated with prolapsed membranes. DH and I had to advocate, HARD, to stay in-patient, rather than go home and travel in twice a week for monitoring. Given my situation, we should not have needed to do that.

Contag also told us that “next time” we should get a prophylactic transvaginal cerclage (TVC). I asked him why I wouldn’t get a TAC, and he was completely dismissive of me. He wouldn’t acknowledge the difference in success rates. He wouldn’t acknowledge that a TVC is so much riskier to the baby. He wouldn’t even discuss TAC as an option, he just shut me down. Because I hadn’t yet given up on Quinn enough to think about ‘next time,’ I mentally placed him in the category of: doctors who are so enamored with their opinions that they won’t even discuss other reasonable options.

I am a member of a group called Abbyloopers. It’s for women who are considering/have TACs. Most women have suffered multiple losses, many have losses after failed TVC. Abbyloopers collects data from members on post-TAC pregnancies. They post it, for other members to see. It’s been a great source of comfort to me, seeing how high the live birth rates are for my TAC surgeon. The other day I was looking at the records from true failed TACs. There aren’t too many of those records, and most are from laproscopic TAC. There was one record where the TAC failed at 17 weeks and the baby was lost. I happened to glance at the doctor’s name. Contag. The spreadsheet also listed state, though, and the state was MD (year was 2009). I’m not in MD, so I assumed it wasn’t him. But that’s an unusual name, so I checked his bio. He was practicing in MD in 2009.

I guess I know why he was so dismissive of TAC: at least one that he performed failed. Rather than acknowledge the stacks of research on the topic, showing TAC is more successful, he decided to cut off that option.

I rely on my doctors to use their expertise, expertise built of knowledge and experience, to guide me. I also rely on them to have the humility to acknowledge their limitations. I don’t think Dr. Contag did that, and it’s highly disappointing. This is just one more reminder that I need to be my own advocate, and not simply rely upon the professionals that are supposed to be the experts, as their judgment may be just as biased as mine!

Monday, January 29, 2018

Chugging Up the Incline

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There is no description of infertility more apt, to me, than that of the roller coaster. From one moment to the next, emotions, hopes, fears, possible outcomes can change. All it takes is one ultrasound, one phone call, one blood test, one hpt to instantly change your state of mind and your hopes for the outcome. Heck, sometimes it doesn't even take any one of those things; simply living from one moment to the next can cause the change! To be fair, I could describe each of my pregnancies the same way.

If my normal luteal phase applies, I'm less than a week out from CD1. The coaster is here, and I'm on it. We're chugging up the first hill before zipping away to the unknown. I know there will be highs and lows, but hopefully this time I can hang on long enough to get off the ride, grateful for the experience. .  .although I don't see myself as that rollercoaster rider who immediately begs to go again!

Monday, January 22, 2018

Microblog Mondays: Me and My Shadow

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Here I sit at CD19, and it appears I've finally got a positive OPK. I'll assume ovulation in 24-48 hours. It amazes me how differently my body can behave at different times. If I look at the cycles I've tracked when I didn't get pregnant, the longest my cycle has ever been was 28 days. That's the entire cycle. The shortest was 20. Now it seems probable I won't even ovulate until 20 or 21.

What would I give to understand what's happening in there? A lot, that's what I'd give! Why are things so different from one cycle to another? Does this bode well (or not) for a treatment cycle next month? It seems rather unfair that this body, that I have to take care of, won't give me any insights into what its doing! Alas, we seem to be stuck with each other, so I'll keep taking care of it, and asking it to play nice in return. . . I suspect it will keep ignoring me!

On reflection, I guess this is what my life has brought me to: the point where my body is a thing that is separate from me, that frustrates me, and that I try to cajole/bribe/force to work the way I want it to. I might need to rethink my approach on this!

Sunday, January 21, 2018

More Losses

2018's not off to the greatest start.

Thanks to the surgery, or to the complications following it, I've lost some weight. I am still below the weight I was back when I first started caring about weight in high school. I'm not into an unhealthy BMI yet, so I'm not worried, but it means that things don't fit. More than half of my suits are way too big. That's fine, I can manage a smaller wardrobe for a while. Let's get real - I like food WAY too much for this weight loss to be permanent.

My wedding rings have also gotten too big. I'm sure it's one part weight and one part the cold, dry winter. I don't want to have them re-sized, since I'm certain I'll be back to my normal before too long, and I don't want them to be too small. And that seemed fine, until last Friday night when I got home from work just after 7:00 and realized they weren't on my hand any longer.

You know, they're "just" material objects. They're insured. The man who gave them to me is still the most important part of my life. Losing them shouldn't be the end of the world. And yet, after losing so damn much in the last two years, after losing things that I couldn't protect, that I couldn't expect to always be there, losing this tangible symbol of my marriage and the last 14 years of my life was a huge blow. They were physical objects, I could count on them not to die. I could count on them to always be there. Until they weren't.

And it's my own damn fault because I kept wearing them, even knowing they were too loose.

That's not the only loss so far this year. I've mentioned the B&B we were at when first pregnant with the twins. We went there to scatter some of their ashes last summer, while I was still pregnant with Quinn. I went on-line to see about reservations to return for scattering Quinn's ashes this summer. They're closed. Permanently. Well, to be fair, there's a number you can call if you want to buy a B&B, but I doubt they're getting a lot of takers.

The current owners just bought the place two years ago. It had been run as a B&B for decades before that. When we left last year, I confirmed that they'd be open this year, as I wanted to bring Quinn back for her first BWCA trip. The owners were due to have a grandchild at the same time I was due with Quinn, so perhaps they decided to close shop and move closer. Whatever the reason, it's another loss. We have the GPS coordinates for the point where we scattered Alexis and Zoe's ashes, so we can get a canoe and get there without the B&B, but it's just one more bit of sadness.

All my coworkers are discussing how utterly tragic it will be if the Vikings lose their playoff tomorrow. It is taking ever more effort not to remind them how lucky they are if that's the worst, most tragic loss they have.

Saturday, January 20, 2018

Exercise . . . in Frustration

I don't think I ever updated on my CD2 RE visit. Let's just say it was an exercise in frustration. For context, during my first two cycles, my RE's office told me to test at home 14 days after trigger, then come in for bloodwork if I got a positive. This cycle, a different nurse called with trigger information. She didn't say when to test or what to do with the progesterone and estrace if I got a negative. I don't recall ever being told that.

So, tests turned negative and I stopped the progesterone 14 days post trigger. One day later, I emailed the clinic to see if I should also stop estrace. The nurse (a different one), told me yes, and that I needed to schedule a regroup with Dr. B before cycling again. Given how poorly the cycle went, that made sense, but it irritated the hell out of me that they didn't bother to tell me until the day I expected my period.

I scheduled the appointment, and was able to get in two days later, which turned out to be CD2. Dr. B asked me why I was there, and I told her the nursing staff wouldn't let me cycle without speaking to her. She seemed surprised and noted it would probably be a short consult. Given the cost, knowing that the doctor didn't think the appointment was necessary left me even more irritated.

We discussed my dismal lining. At one point, Dr. B asked me how I'd been taking the Estrace, and I told her that I followed the directions written on the bottle - "Twice a day, orally" - for the first several days, then switched to vaginal because I had a feeling the bottle was wrong. She stated that the fact that I'd been on it orally probably explained my lining issue.

If I'd been more on my game, I'd have asked some very pointed questions about why the prescription was wrong, and what was CCRM going to do, given that she just told me that error was likely the cause of a wasted cycle. Shame on me, I wasn't on my game, so we didn't discuss that. Honestly, I was just so relieved that she thought we were fine to try again, I let everything else slide. In retrospect, I'm pissed about that. Prescriptions from that office are wrong so often - the pharmacy wouldn't fill my estrogen last time because the prescription said to take it three times a day, "BID". Turns out that BID stands for twice a day. Three times a day, twice a day doesn't work. Another careless mistake leading to even more frustration on my part.

There was some benefit to the appointment. We discussed what else we would do to try to improve my lining. Two things came up: first, given Dr. Haney's feedback on the cerclage, we're going to up my Follistim slightly.That potentially risks twins, but should help my lining, and with the cerclage, twins should be ok. The second thing was that I mentioned my positive CE biopsy, and that I'd been treated and had a negative biopsy since that time. Dr. B. said she'd like to put me on 10 days of doxy, starting day 1 of stims, for my next cycle. I know there's research linking CE and thin lining, so I'm ok with this.

So, a lot of frustration, but hopefully a slightly higher chance of success next cycle.

Thursday, January 18, 2018

Cerclage - Two Month Update

It's now been over two months since the cerclage surgery, and I thought I would write an update for anyone interested.

Barring last week, when I had accidental gluten exposure and was back in stabbing abdominal pain with extreme bloating, by 7.5 weeks after surgery, I finally felt mostly normal. That was the point when the last of the abdominal swelling and tenderness finally went away. The only part of me that still "reminds" me of the surgery is my incision site. My favorite leggings, which I wear as a base layer, have a horizontal seam that hits exactly where my incision is. On days I wear those leggings, I have incision soreness. Otherwise, no issues.

Although I started with 10 minute, light cardio about three weeks after surgery (I called it 'turtle mode'), by 6.5 weeks out, I was back to having regular, hard-core cardio workouts. By 8 weeks out, sex was finally totally normal and enjoyable. By this week, about 10 weeks out, I am doing abdominal workouts without regretting it after. . . .or at least without regretting it any more than normal!

Overall, it's been a much longer, harder recovery than I expected. As I mentioned previously, I suspect that may be due to accidental gluten consumption the night before surgery. That would explain why my digestive system, which had been fine the previous day, already looked awful when Dr. Haney cut me open. It's a reminder that I need to be more careful with my eating. I had a single bite of something that contained trace amounts of wheat, and spent a full week in pain. Although it wasn't intentional ingestion, it was definitely not worth it!

I've asked myself, quite a few times since November, if the surgery was "worth it." I think the answer remains 'yes'. Even if fertility treatments fail, there will always be the possibility of spontaneous pregnancy. The long recovery now is worth the possibility that I may some day be pregnant, and won't have to worry about my cervix. Would an easier recovery have made the "worth it" call easier? Sure! But even though it's sucked, it still gives me peace of mind that I wouldn't trade. How often do you get that when dealing with loss and IF?

Tuesday, January 16, 2018

Microblog Mondays: A Normal Cycle?

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I'm still here, on the bench, waiting for this cycle to complete so I can (hopefully) try again.

In retrospect, I think I"m glad I was forced to take this cycle off. Ovulation appears to be happening later this time - closer in time to when I was ovulating in the cycles before we conceived the twins. I'll be irrationally hopeful that the later ovulation means my body will once again respond better to the stims. Time will tell.

I'm also glad I was forced to cancel because I got "glutened" the day before my BFNQNE. Instead of my usual gluten-exposure symptoms, this time I had intense pain in my colon. It makes me wonder if some of the problems I had from surgery were actually due to getting gluten in our dinner out the night before. We were in Chicago, had to eat out, and the restaurant swore my meal was gluten-free, but the waiter didn't seem to have the greatest grasp of English. Eating gluten, and then having it get stopped in my colon due to anesthesia/surgery could explain the agony I felt, as the last week after known gluten exposure felt very similar. I finally feel better today, and it's nice!

Here's to a gluten free, pain free 2018!

Wednesday, January 10, 2018

Be Careful What You Wish For

Last Tuesday, after the BFN, I started desperately wishing that CD1 would arrive ASAP, so we could cycle again.

Last Wednesday, when the nurse told me I had to do a regroup before I could cycle, I desperately wished CD1 would hold off until the regroup that Friday.

In November, I wished that my cycle would be a normal length - that I wouldn't ovulate super early and that my luteal phase would be normal. That would have let me cycle in November.

When they told me on CD2 that my hcg of 1.1 meant I'd have to wait for my next cycle to do treatments, I wished for a short cycle this month, so I don't have to wait as long.

In November, I wished (and prayed and hoped) that I'd have a decent period - 3 or 4 days, indicating that my lining was growing on its own.

Now, I'm on CD7 and still bleeding after this chemical and I'm wishing that it stops because it might mean something else is wrong.

Basically, I find my self desperately wishing for diametrically opposite things on a routine basis. This can't be normal, can it? Maybe it's an indicator that I just need to chill out and understand that I don't control much (any?) of this, so wishing does nothing but add stress. (Hmmm. . . that sounds like the intro to "just relax and it will happen." Ick!) The best I can do is focus on my version of the serenity prayer: God grant me the serenity to accept the things I can not change, the strength to change the things I can, and grace, good friends, a loving spouse and plenty of decent wine as I figure out which is which!

Friday, January 5, 2018


It's been a long week.

Tests turned to negative at home, and I chalked it up to either a chemical or just the trigger. Reached out to the nurse on Wed to see if I should stay on Estrace and was told to stop and come in for a regroup appointment before cycling again. That would have been nice to know earlier than the day my period was expected. So, regroup scheduled for today. Hit CD1 yesterday.

Talked to the doctor today and agreed on a plan. Did a baseline ultrasound, which showed an 18mm cyst on my left ovary. Ran bloodwork to see if the cyst was estrogen producing, meaning we couldn't cycle, or not, meaning we could.

The cyst isn't estrogen producing.

But my hcg is 1.1. The clinic won't let me cycle unless it's under 0.5. In other words, I did have my third chemical pregnancy, and now I've got a Big Fat Not Quite Negative Enough (BFNQNE).

On one hand, it's nice to know I wasn't going crazy with symptoms and lines. On the other hand, having to push out a month because of a miscarriage is brutal.

Sorry, little embryo, that I didn't make a better home for you.

Monday, January 1, 2018

Not How I Wanted to Start the Y ear

According to my charts, yesterday was 12 dpt/11 dpo, although I guess it could have been as early as 10 dpo. When I've tested the trigger out in the past, it's always been gone by 10 dpt. So I tested yesterday. I'd been having burping, nausea, racing heart rate, etc. All my usual very early pregnancy symptoms.

There were two lines in the morning. Faint, but two lines. I tested again in the afternoon. It was a nice, strong positive! I know how unbelievable that is, given my crappy lining, and how early it was, but I had hope. How much hope? I even looked up what my due date would be - THAT's how much hope!

Tested again this morning: the lines are so much more faint than yesterday that I can confidently say if anything was growing, it isn't any longer. We considered not trying this cycle to prevent another chemical, but that seemed like such a waste given the expense. I'll just hope that maybe my lining built up a bit and it will help for my next cycle.

On to 2018.