Post Sleep-Study and New Dog!

I've been so lazy about posting here, my two or three regular readers must be so disappointed in me :)

The sleep study wasn't bad, they let me take my usual sleep cocktail of drugs, but I looked like something out of a horror show all hooked up.

But,the good news is no apnea. Apparently I do have restless legs, but nobody wants to do anything about it for now.

We got a dog - Michael and I are not allowed to go to Petsmart together anymore. He's awesome. Meet Jack the American Staffordshire mix, who's about 8 months old now, and 65 pounds. He's my exercise buddy, my favorite route is about 3.5 miles long, and we do it after work. Other exciting things coming, but that's another post!

Sleep Studies

As part of getting myself back together after coming off all of the IVF hormones, my doc wants me to go have a sleep study. Ugh. I know my sleep is screwed up, if I am not medicated I'll get to sleep OK, but wake up anywhere from 6 to 12 or more times a night, often feeling the need to get up and go pee. Sometimes I'll stay awake for 20-30 minutes after doing so. When Michael's alarm goes off at 4 or 5 am, I can't get back to sleep until he's actually left the house. This, of course, is generally not normal. With some whopping medication, I can sleep through the night with maybe just one wake-up, usually when his alarm goes off. For good or bad, I'm often sleepy enough still that I often forget about conversations we have as he's kissing me goodbye for the day. I love my sleep drugs, pry them from my hands while I kick and scream.

But, they want to figure out why I'm having trouble sleeping, in case the root cause is something other than the depression and anxiety that I've struggled with since the nightmare. I got scheduled for Friday night, August 15. Allegedly, unless the doctor sends orders not to, I'll be able to take my sleep meds while I'm there. Thankfully, since getting up to pee a dozen times while wired up for a sleep study would basically be impossible, or require a bedpan.

I've been asked about sleep apnea several times. I used to snore like a freight train, and when I was heavy I probably had some form of it, but M says that I rarely snore any more, only when I'm both congested and lying on my back, which I think just about anyone would snore under those conditions.

I honestly don't know what I hope the outcome is. I'd like to be able to sleep like a normal person without drugs? But honestly I've forgotten what that's like. We'll see if this illuminates anything.

To Retail and Other Service Industry Employers on Mother’s Day

First let me make a few things very clear. I don’t hate Mother’s Day, nor do I hate mothers. I’m not unemotional, unpatriotic, or lacking in empathy or compassion. I’m not looking to rain on anyone’s parade, or trying harsh your mellow. I’m not working up to a feminist (or anti-feminist) screed. I bear no ill will toward anyone with progeny, and I don’t hate babies or children. None of that. Adoption is a viable option for many people but that’s not what this discussion is about. Are we good? OK.

Employers, please, for the love of all that is civilized, do not require or even strongly suggest to your employees that they should express a greeting of “Happy Mother’s Day!” to every female patron past puberty.

I get that pleasantries are an accepted part of transactional relationships. Have a nice day, thanks for shopping with us, please come again, these are warm, time-honored snippets of conversation. Where we start running into trouble is when we impose assumptions on the private lives of customers and patrons. I’m certainly not going to touch the “Happy Holidays vs. Merry Christmas” fracas with a 10-foot pole. While it arguably may be a similar debate, faith and religious beliefs is not where I’m going with this.

Where I’m going instead, is the assumption that is made when a “Happy Mother’s Day!” greeting is made indiscriminately to any post-pubescent female. Logically we all know that not every woman is a mother. Some may not be by choice. Some may not be by happenstance – that is they’d like to be a mother someday, but just haven’t had the opportunity yet. There may be a few militants in the child-free-by-choice camp that get offended at the suggestion that they’d have any urge to breed, but even that’s not my point.

Beyond those who aren’t mothers by choice or happenstance, are those that used to be mothers, have tried to be mothers, or simply can’t be mothers. Women in these categories all deal with that status in different ways, dependent in part on how recently they found themselves in that status, and how they’ve dealt with processing it and the grief that comes along with it.

A woman of almost any age could have recently lost their child due to illness or accident. A woman may be in the middle of a long, on-going, and costly attempt at getting pregnant. A woman may have come to the end of that journey of trying to conceive without success.

Many of these women work hard at graciously smiling and saying, “Thank you,” to the throw-away “Happy Mother’s Day!” Many times they will succeed outwardly, but inwardly those words have just driven a spike through their heart. Yet another reminder of their loss imposed on them during a transaction that should have nothing to do with motherhood.

But for some women, the pain may be so fresh or still so close to the surface, that the chirpy greeting will cause them to dissolve in a puddle right before your employee’s eyes, bringing tears instead of a smile, then mortification as she realizes she hasn’t been able to contain her reaction.

The thing is, we don’t know. For all anyone knows, your female customer could have buried her son last week, or had a miscarriage yesterday. She just wants to pay for her groceries, buy that pair of jeans, or pay her restaurant tab without being reminded yet again that she doesn’t have that status that she used to have, was about to have, or desperately wants.

Too often we think of motherhood as something that all adult women will want to experience in their lifetimes, and that blanket greetings like this do no harm. The good wishes, if not directly applicable, should just be accepted with aplomb. The speaker didn’t know of your private pain, and the greeting makes other people happy, so why shouldn’t it be given?

We engage in these conversations as a matter of social form. The content of the exchange is intended as pleasantries and good will, not as an evaluation and adoration of someone’s reproductive history.

So unless your customer has a small child with her that’s tugging at their hand and repeating, “Mama!” endlessly, please don’t assume that she’s a mother. Don’t put her in the awkward position of either feeling the need to disclaim motherhood status or to hide a painful emotional reaction that may come. 

My birthday falls on Mother's Day this year. I used to resent it as a child, having to share "my day" with my mother. This year, having just closed the final chapter on our attempts to have a family, for me to be a mother, I resent that the calendar lined up that way this time. I'd like to be able to go out to dinner with my husband on my birthday and not have everyone assume we're celebrating Mother's Day. So instead, I'll probably be a hermit for the day, though with all the hoopla going on already, it may be more like a hermit week this week. 

I know this is my issue to deal with, but I do not believe I am alone in this sentiment that the indiscriminate greeting doing harm, even if it's a relatively rare event, is worse than sticking with your every day neutral greeting on Mother's Day and the time leading up to it. 

There’s nothing wrong with “Have a nice day!” Truly.

Answers That Come in the Form of Questions

When you think about getting answers to something, we almost always think in terms of facts. How tall am I? I’m 5’1.5” (that half inch is very important). When is my birthday? May 11. We ask a question, and there’s a definitive statement that answers the question. Certainly there are philosophical questions that can be debated, or for which we may never fully understand – what is the meaning of life? Why am I here? But for most questions, we believe there are answers to be found. Are we alone in the universe? We don’t know right now, but the odds of that are astronomically small given the size and complexity of our universe. Scientists struggle with questions every day. Indeed, many people form careers around asking questions and then searching for the answers, sometimes to succeed, sometimes to fail, sometimes to discover things they didn’t even know they were looking for. 

But when we ask questions of our medical professionals, we don’t generally expect to hear, “I don’t know,” in response to those questions. It’s not that the professional in question is incompetent, ignorant, or behind the times. It’s just that despite our amazing leaps in technology and medical science in the last century, there is simply so much that we don’t yet know about how bodies work. Medical researchers are some of those scientists that can spend entire careers seeking the answer to questions that have yet to be answered. 

Yesterday I had the difficult conversation with my reproductive endocrinologist about why all three of our IVF attempts failed. The short answer is, he doesn’t know. That’s horribly unsatisfying, and tends to leave me feeling very powerless, but it’s the only concrete answer that we have at this point. We just don’t know. 

Certainly there’s a hypothesis or two. The apparent problem is that my uterine lining was just never able to grow robust and rich enough to support implantation of the embryos. So that’s sort of an answer, but it’s also a question. Why? What’s wrong with my lining? We don’t know. Current practice has the doctor measuring lining thickness via ultrasound, examining blood flow on ultrasound, and measuring hormone levels in the bloodstream. They can, and we did, biopsy the lining to inspect it microscopically to look at the progesterone action and apparent health of that tissue. But what makes a lining sufficient or competent to support implantation? We don’t know. It’s being studied, there are some additional tests of questionable predictive value that can be performed, but still we don’t know.

So we have established that the proximate cause seems to be an insufficient quality of the uterine lining. But why is my body that way? I had some chronic inflammation of the lining that we addressed with multiple rounds of antibiotics late last summer and fall. Could that have existed for years and damaged it? We don’t know. Last summer during my hysteroscopy he found a minor sub-septate formation in the uterus which he repaired. Was that an indication of other poor uterine characteristics? We don’t know. My uterus has been described as somewhat small, is that a contributing factor? We don’t know. Did all of these factors combine and lead to failure? We don’t know. Have I, seemingly ironically, concerned myself with birth control over several decades and never really needed it? We don’t know.

We don’t know. Probably one of the most unsatisfying sentences in the English language.

My doctor seemed genuinely distraught that we were unsuccessful. I feel very fortunate to have been his patient. He took a very personalized and dedicated approach to my case. He did extra research, consulted with peers, and made every effort to bring about the best circumstances that he could – but we only had 5 embryos that were used in 3 transfers – and we simply “ran out.” His compassion and efforts went so far beyond what most reproductive clinics would have done. That we were unsuccessful would not prevent me in any way from recommending him to anyone that needs reproductive assistance. I truly believe he’s one of the best in the country (Dr. Tamer Yalcinkaya – Wake Forest Baptist Health Center for Reproductive Medicine).

So - what I do know, is that any further attempts to have children would be unaffordably expensive. We could continue to spend money on donor eggs, try to hyper-dose me with hormones to build my lining further with each subsequent cycle. I’m not sure my mental health would survive that – hormone levels that are 10 and 20 times higher than normal are not a pleasant experience. The Man has said it would probably drive him to drink, and that’s a big statement from him (he doesn’t, in deference to his epilepsy). We could spend even more money, obtain donor eggs and then use a gestational surrogate. We were actually introduced to one several years ago locally but a mutual professional acquaintance. Even going into a direct agreement with her (rather than going through a surrogate agency) would run the entire process upwards of $75,000. While taking a viable embryo and implanting it into a “proven uterus” such as hers would have a high probability of success, that’s money to which we just don’t have access. Going through an agency would probably add another $25,000 on top of that. Even if we could finance such an endeavor, I already owe a mortgage-worthy amount of money on my student loans from my MBA. The budget really couldn’t take it short of a Lotto win.

For many reasons adoption is off the table for us. We were foster parents on the road to adoption several years ago, I’ve mentioned that in the past, and it’s not a road we will travel again. Private adoption suffers the same barriers that surrogacy does in costs – though probably “only” half of what we’d spend on a surrogate. No – that door is firmly closed as well.

At the end of our conference yesterday we told him that we were done. It was a truth that I knew as soon as we got the final negative test result almost a month ago, but saying it out loud to him gave such a finality to the situation.

I did take in the remains of my unopened medicines and supplies. Needles, estrogen patches, progesterone oil. These items are expensive without good pharmacy and infertility insurance coverage. I asked him to please give them to a patient with crappy or no coverage, and he assured me they would be put to good use.

Ending our relationship with him, for the second time given we tried for over a year with other techniques back in 2007, is difficult. It is a chapter in our lives that has come to an end.

Now we must move forward, figuring out how our lives will play out without children. I told the Man that I’d probably drag him around the world more than we would have been able to, and he didn’t object too much, insisting only on having a decent net connection for at least some of the destinations. (Addict!)

My grief has been a rocky road. I’m back with the therapist I worked with after the nightmare, she’s pretty amazing, but it will take time. Time and some pharmaceuticals I wasn’t allowed while we were trying, so there’s at least that. I have no shame in utilizing such tools, particularly as some of my issues involve anxiety and tendencies that are likely to have been genetically passed on to me.

This time I’m not feeding my grief, I can’t in many ways, but the lack of desire to eat myself into a coma is a good thing. I seem to be channeling much of it into exercise, which is good. The hormones gave me some bloat, and the inactivity associated with some of the procedures I’ve been through led to about a 10 pound gain that I need to work off.

I still catch myself thinking about things related to parenting. I might roll my eyes at a choice of names I hear someone has made, I passed a church-based school the other day and thought about how much tuition might be. Little thoughts that I have to remind myself don’t apply to us anymore.
 

Mother’s Day is approaching, this year it’s on my birthday. I always hated “sharing” that day as a child, but this year I do feel rather cheated that we won’t be able to go out and celebrate my day without it being assumed we’re celebrating Mother’s Day. Honestly, our favorite restaurants would be packed and it wouldn’t be a great experience, but I do resent it, rationally or not. Our 6^th wedding anniversary is the following week, May 17, so I’ve suggested that we combine the celebration this year. Something quiet, inevitably. Dinner, a movie in bed, a snuggle if we don’t end up with all the cats piled on top of us.

I still can’t fully imagine what life will be like going forward. I’m thankful I’m not near as much of a zombie as I was during the nightmare, but one of the “mantras” that got me through then does apply still now. One breath, one minute, one hour, one day, one week at a time. Dealing with grief can be as much about survival as anything else. One moment is all I have to think about and get through. There will be another right after it, but I don’t have to think that far out if I can’t. Just now. Just today.

Sometimes answers come in the form of questions. I hope that someday the questions that would help someone like me will be answered. I will be grateful to the scientists who will make that possible.

The Things We Do

I sit here tired...no, not tired. Tired doesn't even begin to describe it. Exhausted. Bone-tired exhausted. I sleep every night. Sort of. I can get to sleep - a little quicker with a modest snifter of cognac, but I can't stay asleep. I wake up. Not just a slightly dreamy roll-over, full-on awake. Not just once, but three, four, five, six, sometimes even ten times a night. Every 45-60 minutes, I'm wide awake. I have to pee, my butt muscles are screaming at me to change positions, my shoulder is crying from the pressure of sleeping on it when it's still not healed. 

This morning we went to the reproductive endocrinologist again for another endometrial biopsy. This is the fourth? fifth? Honestly at this point I've lost count. I had one after the first failure, then I had several more trying to confirm that we'd gotten rid of a chronic inflammatory condition discovered after the first one, and then looking at whether the new drug protocol was working right in several trial cycles.

We did another two-embryo frozen embryo transfer IVF in early December and got the negative test on the 12th. We thought we'd cleared all the issues that we'd had going on during the fresh round and the cycles leading up to this.

The only thing I didn't know about the time, was that the doc wasn't entirely happy with what they saw on the last endometrial biopsy. Progesterone that occurs naturally or in our case, added through drugs, has several effects on the endometrial lining that make it an attractive place for an embryo to embed and begin growing. Apparently mine didn't look as happy and inviting as it should have last time - though all other signs were good, so he chose to proceed with the transfer.

I trust my doctor, so I don't know that I'd have made a different decision than that if I'd known, and honestly it's pointless to debate the idea.

We have one frozen embryo left. One last chance to get this done - or we're out. I don't have another $28-$30,000 to do another donor round short of winning the lottery, we've tapped all the resources we have access to at this point.

So this time around, we have to get things as perfect as we possibly can. So I've spent a full cycle on all the drugs, plus added Crinone - progesterone suppository gel, so nearly double the progesterone most IVF patients get during a cycle. Usually it's just intramuscular shots of progesterone oil, which is just a joy ride in and of itself. 1.5 inch 22 gauge needles in alternating butt cheeks at 4 or 5 in the morning, depending on when the Man has to be at work each day. I'm bruised and feel like I've been beaten repeatedly with a 2x4 across the ass every day.

I'm already on double the amount of trans-dermal estrogen with the patches (I wear two rather than one) - and instead of twice daily oral estradiol, I take it vaginally to help with absorption because apparently with my rearranged gut I wasn't getting enough of it through my digestive tract. Where a normal estrogen blood level for a pre-menopausal woman is 20-375, my levels have been running at 1400-2100 depending on how far we are into the cycle. The blood progesterone level isn't so much in question now although it's likely to be huge, but we're looking at the evidence in the lining from the biopsy today.

The sleep issues are, at least in good part, attributed to those massive hormone doses, and unfortunately sleeping pills are not an option during all of this. I spent quite a bit of time after the Nightmare sleeping with the assistance of Ambien, and dear God do I miss it. I'd trade 9 hours of my alleged sleep for 5 uninterrupted hours of Ambien-fueled sleep any day. 

So today I took another 3 inch needle internally for the local anesthetic before the biopsy - I'm thankful I don't have to see this part of it - knowing how long the ass needles are is bad enough. If the anesthetic really is reducing the pain, I'm not sure I'd want to know how much it really hurts, because honestly even with it, it hurts like a motherfucker. Hurt like a motherfucker squared is not really something I care to do.

So we wait now for the pathologist to take a look. The senior pathologist - since he and the doc reviewed my sample together last time. Doc is anticipating this will come in by Wednesday. Thankfully, I've been relieved of having to do the IM shots for the next few days, and I can give up the vaginal estradiol as well until the results come on. Should the sample be sufficient, we'll stop all the other drugs, let me have a period, and start it all up all over again. If the results are as desired, we'll do about 2 weeks on the two estrogens, another round of ultrasounds and blood work to check things out, and then both forms of progesterone again leading up to the final transfer.  If the results aren't as desired, he'll have to figure out another way to improve the progesterone action - which will mean another full test cycle.

In deference to my bruised ass, he did offer me a rest cycle, but there is something to be said for back to back medicated cycles that can encourage my body to get with the program and make a nice comfy nest for embryos. So despite the bruising and pain, I chose to have him go forward with whatever will become of the next cycle - another test or the real transfer.

I question my sanity in continuing this regularly - but I'd never stop questioning whether we could have success if we didn't see it all the way to the end.

I know success will ultimately lead to far more sleeplessness - pregnancy impacts it, having a newborn of course does, I just - I don't know. It's hard to consider it "worth it" right now - instead it's a barely tolerable side effect.

The things we do...

What's For Dinner? Beef, Vegetable, and Barley Soup

It was really cold this week, at least for North Carolina, and my urge for soup was really strong. It's difficult at times to get a sufficient amount of protein into a meal if soup is the main course, and this recipe is no different. You have a few options - adjust your eating throughout the day so that this meal can handle having only about half the normal amount of protein in a meal, or add extra meat to the soup. If you do that, remember the nutritional information will change in all respects, not just in the protein count.

Don't skip the fresh herbs, it really makes the flavor.

This recipe makes a ton of soup when you're eating it in just 1 cup servings, but it freezes well. I use 2-cup storage bowls and pop them in the freezer, that way I'll either have a meal for both of us, or two lunch servings for myself. 

Beef, Vegetable, and Barley Soup
 

• 1 small turnip, peeled and diced (about 1 cup)
• 1 medium onion, diced (about 1.5 to 2 cups)
• 4 or 5 medium carrots, peeled and diced (2 cups)
• 2 stalks celery - outermost fibers peeled off, then diced (1 cup)
• 2-3 small red potatoes, diced (1 to 1.5 cups)
• 1 cup petite peas, frozen
• 3 tbsp butter
• 1 cup pearled barley
• 12 cups low sodium beef broth
• 4 cups low sodium vegetable broth (or homemade)
• 12 oz beef tenderloin cut into small cubes
• 1.5 tbsp minced fresh thyme
• 1.5 tbsp minced fresh oregano
• kosher salt
• pepper

Melt butter in large pot. Add all vegetables, along with a healthy teaspoon of kosher salt and a few twists of freshly cracked black pepper. Saute for about 10-15 minutes until they soften and onions begin to turn translucent. Add broth, bring to a boil. Reduce to a firm simmer and cook for 20 minutes. Add barley, and herbs, stirring well. Cook for 30-35 minutes until barley is softened. It will absorb quite a bit of liquid, so what may have looked like a very brothy soup will be thicker at this point. Add  the beef, simmer another 10 minutes for beef to cook through.

Nutritional information: Makes approximately 12 1-cup servings. 204 calories, 6.2g fat, 25.8g carbohydrates, 5.5g dietary fiber, 5.5g sugars, 12.6g protein