A card campaign

My family and I really appreciate all the thoughts and prayers for my special sister Sara over the last few months as we've grappled with first her cancer dx and now her new treatment plan. Now that her five month chemo run is beginning on Monday, my younger sister Jen came up with the idea to start a card campaign for her to help lift her spirits while she is dealing with the effects of the chemo. So my sisters and I are getting our cards together so that she gets something from us everyday and rallying as many troops as we can find to help us out.

She LOVES getting mail (she LOVES people and is an absolute doll) and we know that she would love to hear from anyone who is thinking of her and wishing her well. If you want to make her day, please send a card, note, or anything with a teddy bear on it (her favorite) to: Sara G., 2719 Keith St., Eau Claire, WI, 54701. Many many thanks! :)

Stylish Blogger Award

Thank you Magnolia/C from Come What May for this lovely Stylish Blogger award. I really hope that this cycle is your lucky one hon and am thankful to have met you (even though it was bc of shitty IF) and am so thankful that you are such a great friend.

Believe it or not, I'm actually quite shy IRL, though people who know me well would say not once you get to know me. But on here I'm waving around pictures of the inside of uterus, so it's kind of an icebreaker. ;)

Now for 7 random things you may or may not already know about me:

1) I'm a nerd (but w/social skills). I read the Economist and watch foreign affairs programs for fun. I'm unusually good at taking tests, always have been. I didn't have to work very hard to do well in school. I liked doing Calculus. Please don't hate me because I'm smart. ;)

2) I <3 being near the water, especially the ocean. Maybe it's because I grew up nowhere near it (in the landlocked middle of WI), but it makes me really happy and calm and serene. Someday, I will live on the water again.

3) I have three sisters (and a step-sister), and was raised by my mom mostly, and I went to a women's college (which I didn't particularly like), but ironically I much prefer to hang out with men than women generally. I'm pretty low key, low maintenance, and low drama and they are usually like that too.

4) My life changed forever when I came down with mono in college, at the end of the summer before my senior year. I was working three jobs, commuting between the Cape and Boston, and taking summer classes to graduate on time (since I had transferred from said women's college), enjoying my new boyfriend, and generally ready to take over the world. Then I got sick, and I've never really felt the same since. That was 12 years ago. I still tire easily, and have unfortunately had to adjust my life and career goals accordingly (no grad school, Wall Street or White House job for me :( ).

5) I'm really tall, about 5'11", and I like it, even though it's not always easy being tall in a short person's world. I've always been tall, like I'm in the back row of every school picture ever taken. I still have stretch marks on my legs and hips from my big growth spurt in grade school. I'm also kind of a klutz, and DH is about the same height, so it's mostly flats for me...

6) I don't run, though I was good at it when they made us do it in school. I think I'm missing the gene that makes people want to run marathons. I just don't get it. Everyone assumes I do because I'm lanky and athletic (or bc of how low my heart rate is), but I don't. When asked if I do, I say "only if someone is chasing me." :)

7) I really like to vacuum, and I hate to dust. I could take or leave other cleaning, though I like things to be clean, but I've always loved to vacuum. It's really inexplicable...

A dozen of my favorite uber-stylish blogs to check out (from the sidebar)...
Mrs. Hoppy @ Then there were two
Sulfa @ Close my eyes and Leap
R @ Gum, 2, 3, 4
Amanda @ From here to maternity
Lindsey @ We're Finally Three
Rachael @ There's no crying in baseball
L @ An Element of Blank
Niki @ It's Always Something
Anasara/S @ PCOS: Pretty Crappy Ovary Syndrome
Casey @ Align my heart, my body, my mind
L @ Life through my eyes
C @ The conception craze

We finally have a plan

So after much discussion, I think we finally have a plan to move forward. It couldn't come at a better time. Instead of focusing on the week that would have been and our much awaited first big pregnancy announcement that will never be, I'm trying to focus on what's coming next.

When my body gets back in the game (hopefully my hCG next week will be <2 and AF will not be far behind), and we can schedule my first in-office hysteroscopy (my 3 have all been @ a hospital) and then we will do a FET ASAP with our two frozen embryos w/our current clinic.

We finally decided against moving on to a fresh cycle with them (via shared risk) for a whole host of reasons that outweighed the benefits for us, including: the upfront OOP cost ($16K + monitoring + meds), the likelihood that we will not stay with (and didn't want to be tied to) this RE beyond this cycle based on our WTF, and that I don't know if I even want to do up to three more fresh cycles and any applicable FETs before moving on (DH certainly doesn't think we should).

Hopefully our m/c was just bad luck (or caused by something that can be corrected w/another hysteroscopy) and since we can get pg, dare I say, "easily" (like two years and an IVF later easily) that we can again. My RE said that he has no reason to think that we will not have children, but as my acupuncturist said we've just been chosen for a long and difficult road.

If the FET doesn't work or heaven forbid we m/c again, DH is already in talks with his employer to see if they will give us some additional coverage for IF (since we'll have exhausted the rest of our $15K lifetime max w/the FET) as they are self-insured. Fortunately, he has one of his bosses (an IF, IVF, m/c, and now adoption vet) to back him up, and you'd think it wouldn't be that big a deal since it's just a write-off for them, but we are not banking on this. I am also looking for a new job with nice fat IF bennies. Then we would likely get more testing and find yet another clinic (closer to wherever I'm working) to cycle again.

No one should have to mortgage their future for the shot at having a family, and while that is the reality of the current environment, I am certainly not above gaming the system for our benefit. We live in a mandate state for crying out loud (though neither of our employers are subject to it, they are both self-insured), and the last job I turned down (in Boston) before I accepted my current one had amazing IF benefits, before we knew we needed them. So even with this economy, hopefully it won't be impossible. But I've still got to stay on here as part of my indentured servitude until at least the end of March.

Tests and firsts

I just heard back on the tests we had run late last week, much earlier than expected. Don't worry, I requested a paper copy, just to be sure they actually did them. Everything came back normal. Info from here on what we did.

"Autoimmune testing for RPL:
•Anti-phospholipid Antibodies (yet to run)
•Anti-cardiolipin Antibodies
•Lupus Anticoagulant

Note that anti-cardiolipin antibodies (ACA) are part of the group of anti-phospholipid antibodies (the other six are Phosphoethanolamine, Phosphoinositol, Phosphatidic acid, Phosphoglycerol, Phosphoserine, and Phosphocholine). It is fairly common to test for ACA, but a full work-up includes all seven anti-phospholipid antibodies being checked for three markers: IgG, IgA and IgM markers (so 21 different markers in all).

These tests diagnose a condition that can cause mainly 2nd trimester losses due to blood clots forming in the vascular system of the placenta. The condition is also responsible for some late 1st trimester losses, after heartbeat is identified and some intra-uterine growth retardation has been observed.

This is the cause of about 10% or so of RPL. The treatment usually involves low-dose aspirin and heparin."

Other tests we are doing...

"•Chromosome Testing on Fetal (Miscarriage) Tissue - done (normal)
This can only be done right at the time of miscarriage. It is an analysis of the genetic makeup of the fetus. It can indicate genetic problems that lead to RPL. Many miscarriages are caused by chromosomal abnormalities that are unlikely to repeat. To know if the problem is likely to recur, it is necessary to study the genetics of both parents as well. (N.B. our testing was just of the chromosomes, not the genes)

•Karyotyping of Parents
Chromosome analysis of blood of both parents. It can show if there is a potential problem with one of the parents that leads to miscarriage, but often has to be done in conjunction with fetal testing to provide answers.
These tests help rule out the 3% or so of partners that carry a "hidden" chromosomal problem called a balanced translocation.

•Thyroid panel (TSH)
Thyroid problems can result in both fertility problems and miscarriage. If a problem is found, your physician will in many cases attempt to regulate the thyroid before another pregnancy is achieved.

•Hysteroscopy
This is usually done under local or general anesthesia. Your cervix is dilated in order to insert a tiny scope which the doctor uses for viewing the inside of your uterus. Often carbon dioxide gas is used to expand the uterus for better viewing. Minor abnormalities may be fixed during this procedure, and it is sometimes done in conjunction with a laparoscopy, hysterosalpingogram, and/or an endometrial biopsy. Timing within the cycle varies -- alone it might be done at the beginning of a cycle, with a laparoscopy it is usually done around ovulation, and with a biopsy it would be performed a few days before your period. Expect some discomfort and cramping afterward, spotting, and some shoulder pain if gas was used. It's probably a good idea to take the rest of the day off and relax. Have some over-the-counter pain relief available or ask your physician for a prescription."

Moving on in fits and starts...

At the prompting of my acupuncturist on Saturday, I had my first steak since the m/c this weekend, though I've eaten other meat in the last few weeks. She said that my blood deficiency (exacerbated by the massive and extended blood loss) was likely contributing to my chronic fatigue and headaches (which my nurse wouldn't let me take Excedrin for). She also started me back on the "Precious Sea" herbs that she had first given me last summer to help build up my blood (one of the only remaining IF meds I hadn't given away). It's silly I know, but I had a steak the night before the m/c and I was still having a negative association that I had to get over.

Also, now that I'm no longer bleeding (finally, yay!), I'm finally going back for a massage for the first time since the loss. I had had my first of the prenatal variety the weekend before it (after my not so relaxing family Christmas weekend), and while I know there is no connection and it was absolutely wonderful, it takes awhile to go back and retrace steps, if you KWIM. Totally irrational, I know, but there is little about any of this that is.

1st Blogoversary!

Can you believe it? I've been tapping away over here for a whole year. It all started when DH and I went to the drop-in hour of an IF therapist a year ago, the same one who leads the biweekly support group that I'm blowing off this very morning, and she encouraged me to start journaling. And since I live in the 21st century, I figured that meant I needed to start a blog. So here we are.

Now I'm going to bore you with a rewind on what has happened since we started...

Last January, we had just started with a new RE (our 2nd, we've since been to three more), and were getting ready for my much anticipated septum surgery (I've since had another). We then went on to find out that instead of being completely unexplained, we are just sort of unexplained, since DH has marginal sperm morphology (which is not proven to prevent success, but certainly doesn't help). We had another failed IUI (this time w/injects) and after many delays finally got to do IVF, only to lose our baby in the 9th week. So now we are waiting to do yet another hysteroscopy to make sure all is good in the ute before proceeding with our FET. Lord help me if it's not.

So in short frankly we haven't really made a whole hell of a lot of progress. So here's to year two of blogging (and year three of TTC) being much more fruitful and productive than the last...

It takes a village...

So I finally have a real update on what's happening with my sister Sara. For a refresher, she was dx w/fallopian tube cancer after having a hysterectomy in September. Then she had open biopsy surgery where they tested some 70 tissues in her abdomen to check for metastasis. The outcome was that is was stage 1 (contained), and grade 2 (from 1-3, moderately aggressive cells). This was the cutoff for not needing chemo, so that that was not part of the plan.

Well since then, since this type of cancer is so rare (esp. in someone who's only 40) her surgeon presented her case at a pathology conference. One of his colleagues pointed out that from the slides he thought it was grade 3 tumor cells (most aggressive) rather than 2. So then back home all the local pathologists got together, and out of the 11 of them, they split 6 (3) to 5 (2) on the grade. So the surgeon (who we all now love even more than before) reached out to leading pathologists in Boston. The two of them agreed that it was stage 3. So 3 it is.

So she starts 18 weeks (6 rounds, once every three weeks) of chemo on Jan. 31st, so it will go into May. She already got the button installed on her chest, so she won't have IVs each time. She will be on two different drugs, which I guess "counteract" each other so that the effects are somewhat less awful. But she will lose her hair. :( She will be given meds for the nausea and will be on whatever modified activity she needs to deal with the fatigue.

The chance of recurrance and mets with chemo should be low, which is good since the prognosis for fallopian tube cancer is similar, but even worse than ovarian, and I think most know how bad that is. My mom was not willing to risk this, given the change in grade.

Though apparently there is a debate going on in the family, primarily between my RN Mom and speech pathologist sister, the latter who thinks that the chemo will be too much for Sara. I agree with my mother, based on what I know, that she is much tougher than we give her credit for and did much better with her two surgeries than any of us imagined she would. So we'll see.

One step forward, two steps back...

WTF

Well, we had our "WTF" mtg.(follow-up mtg. w/our RE to our IVF cycle) today. I, of course, had high hopes for sitting down with Dr. S and discussing what happened and what he thought, but was disappointed. He asked if I had any questions, which I of course had lots of pertaining to the cycle, the baby, testing, and next steps.

We started by talking about the cycle. He was happy with how things went, though he said he'd thought we'd have a few more eggs to work with (we had 10 retrieved, but only 7 were mature, and 5 fertilized w/ICSI), but that it was nothing to be concerned about. I asked about embryo quality, since we had never gotten any information on that. He said it was fine.

Then we talked about the baby. He didn't have much to say other than what we already knew. He said just because the chromosomal report was fine, doesn't mean there wasn't anything wrong with the baby but that there was not any way/use in finding out about genetic issues with her or us. I had never heard anything back on the testing on me the day of the m/c, so I guess they are checking into it.

I asked about other tests that we could do on us: MTHFR, celiac, other clotting issues (Lupus antiphospholipid antibodies), killer cells, infections, etc. He agreed to the clotting testing, though he said it's "unproven" whether having or treating this has any impact on m/c, though it would be std. to do after two or three. He said immunology is "voodoo" (no joke) and said that everyone who goes to one comes back with something and none of it is proven to have anything to do with what he does. So he's not a believer then, clearly. Good to know. He didn't think any of these other things were an issue.

He said we could do an office hysteroscopy before we cycle again (if we want), but that he didn't think my previously removed uterine septum was an issue with the m/c. After railing on about the scientific method for 45 mins., he said that it was just "bad luck". So there it is, I guess.

He said he thought there was no reason not to just do the FET (with our two frozen) vs. a new fresh cycle when we are ready, though we could decide what to do based on interest in shared risk. He made it clear there were no guarantees. Yeah, no shit Sherlock.

Overall, he was pretty defensive, though I very calmly asked my questions, which makes me nervous, but it just reinforced my understanding that his business is to get people pregnant (which he does very well BTW), but that his interests/knowledge/respect, etc. don't expand much beyond that.

My beta hCG is now 11, so "hopefully" I'll be bleeding again in no time (yippee!), though he said that sometimes people have already bled out completely (I can only hope, right?) and then it wouldn't come until a month later.

I haven't decided yet what we should do, I guess we need to think/talk about it more. I could go to see a local reproductive immunologist that was recommended to me by my acupuncturist (or another one by an IF friend) since we have time to burn, or just do the FET and see what happens. I am also looking for a new job (w/IF bennies), so we may do the FET and if that doesn't work, I will hopefully have benefits and likely be working downtown again and could find yet another RE and see what they say before we cycle again.

There's nothing like the intangibility of unexplained infertility and m/c to drive a person who likes to know WTF is going on a bit crazy. Keep Calm and Carry On...