Thursday, February 28, 2013

Waiting is Hard

My friend sent me a video on self-compassion and it was really helpful to me right now. Especially right now, I can use a reminder that I often say things to myself that I wouldn't say to others... I should be kinder to myself, and work on being a good friend, or the friend I'd like to be to others.

 I'm okay sometimes, but I'm really depressed a lot of the time lately. A good deal of it may be the progesterone and estrogen that I am on (a patch and a suppository each morning- oh my god am I hungry all the time too!). But a lot of it is feeling like a huge failure. It's bad enough that I couldn't get pregnant after trying for over two years now, but now I keep telling myself that I am an IVF failure as well. Many of the women in the support group that I was close to all got pregnant from their first IVF- and meanwhile, my third one was pretty much a bust. Not having three IVFs work does seem to be unusual, and not what I had expected to happen. Of course I had the two embryos transferred on Sunday, but neither was good quality.

I don't test until the Saturday after this one, but I know I'm not pregnant. We've spent so much money and time and heartbreak on this. Sometimes when my grief consumes me, it's all I want anymore. I feel so burdened by the grief that I can't do much else to improve other areas of my life. I just feel trapped and sad and there is nothing I can do to change my basic biological inability to have what comes so easily to most people.  Of course we will adopt, but I feel so exhausted already, and adoption involves FBI background checks, a home study by a social worker, psychological evaluations, and upwards of $30,000 that we don't have just laying around. It could be years. It all feels so very unfair. I guess I need to take this to a professional, though even that seems a lot of work. But I will do it. For now, I just need to wait out the next 9 days and see.

Tuesday, February 26, 2013

Two Week Wait: Week One

Last time I wrote was Trigger Day. All went fine with triggering, and I had no nausea the way I did the first time. I did have some mild cramping all day Wednesday, but no big deal.

Thursday was retrieval. We got there bright and early, 7:30 am. I was excited and anxious, ready to be done with the monitoring phase of the cycle and eager to hear how many of the possible 7 eggs I would have retrieved.

For some reason, though, I was much more nervous than in the past. The retrieval room was much scarier than my old clinic's. As much as I didn't like my old clinic, they had a great set-up in their IVF suite. They had dim lights, the room was warm, and they played soft music to help calm the patient. At my new clinic, not so much. They started the anti-nausea drip in my IV, which made me extremely dizzy. Not in a bad way, it was almost fun  :)  but it was a little disconcerting. Anyway, the actual room was NOT warm and fuzzy the way my old clinic's room had been. It was bright white, sterile, and COLD. As I got on the table, my knees were knocking like crazy. They also could have waited a minute longer for the amnesia drugs to kick in. They inserted the speculum, which doesn't hurt but is never fun, and that is the last thing I remember.

Apparently I slept for a while afterwards. When I woke up, the nurse told me and B that they had retrieved 6 eggs. I was groggy and tired, but happy enough with that number. We went home and I slept much of that day.

The next day, I got bad news. Out of my 6 eggs, only 5 were mature. Okay, that was fine. But here is the bad part, that even the Fellow warned me I would not like: although we used ICSI, I only had TWO fertilize. TWO. That is really no better than any of my other cycles.
Cycle One: Six eggs retrieved, 1 fertilized normally, 1 fertilized late
Cycle Two: Four eggs retrieved, 2 fertilized with ICSI
Cycle Three: Six eggs retrieved with 5 mature, 2 fertilized with ICSI

ICSI typically should fertilize anywhere between 60-80%. With me, I've now had 50% and this time I had 40%. Pathetic! Why was I pumping myself full of drugs, going through a scary medical procedure, and then having ICSI totally fail me, with no more embryos than I've ever achieved before. So, so disappointing. I don't know how many times I cried on Friday.

But we went in on Sunday as planned. Upon arriving, I did acupuncture. I was told that my two embryos were ready to go. They were both, sadly, only 4 cells. By day three, they should be 6-8 cells. The fragmentation was 75% and 25%. That first number is bad. Low implantation potential. The second number is okay, pretty good, pretty average from what I have read.

I came home Sunday, so sad and disappointed. I had really hoped that a new clinic and a new protocol was going to bring better results. I had to ask for a Valium on Sunday for the transfer, because my nerves were so shot and I was so anxious and sad.

However, upon closer examination of the photos on Sunday, I did start to feel a bit better. My embryos are only 4 cells, but one of them looks much cleaner and crisper, with less fragmentation that any of the other embryos from previous cycles.

So, I'm still sad, and we've decided that we won't try a 4th cycle if this one doesn't work. We just feel that we have a quality/quantity problem and a fertilization problem to boot. Who knows if it's my egg quality that prevents the sperm from coming in, or if there is a serious sperm issue. It doesn't matter, but what it means is that we don't make good embryos. And we've tried two clinics and two protocols, one which all three doctors I interviewed back in October had recommended. I think we are at the end of the rope here.

So, I am hoping that one of these embryos is nestling in, but ultimately I realize that the chances are not very good. I have cried and grieved so many times, and I have to get off this crazy bus.

For that reason, we've talked about adoption, and how we think that is the next step. We don't want to wait too long before pursuing it either. I want a baby, I've already waited over two years, and I want my heart to heal. I do not think remaining childless is going to get any easier.

Life feels so unfair right now. Why am I surrounded by babies, and even my IVF friends have mostly all become pregnant this year too? I am sure my friend B's cycle right now is going to result in pregnancy and I will be happy for her, but I can't deny it will hurt. It's hard not to feel like a double failure: a pregnancy failure, and now a three-times IVF failure.

I have done everything I can do. All I can do is wait and hope now, and temper that hope with realism. March 9th, you will be here soon enough.

Tuesday, February 19, 2013

I Almost Became a Medical Error Statistic

When I spoke with the Fellow yesterday, he told me the time to trigger and the time to come to the clinic on Thursday morning. 

Something just didn't seem right.

I worried about it all evening, and today I called the IVF Nurse and apologized for second guessing them, and asked her if this can be right.




Can you imagine, what if I had ovulated early and missed all those good eggs? I am so freaked out just thinking about what almost happened. If I hadn't already done two IVFs and known that it should be 36 hours and not 37, this whole thing could have ended in disaster. And I bet they would have not admitted their mistake either, but just said "Oh well you ovulated early."

I am still shaking just thinking about how badly this could have gone. This does not give me confidence in doctors.

Important Advice From My Mom

In response to my complaining to my mom that I am weepy from the estrogen, and craving the contents of the bowl of chocolate which someone keeps bringing in to work:

Hi Sweets,

EAT THE CHOCOLATE. It is good for your spirit.

xxxxooo mom

Trigger Day!

I haven't updated in awhile, not sure why. I've been emailing with friends to share my progress, and keeping track of it all in my little blue book (which Dr. M asked me about yesterday, as I was frantically writing down follicle sizes during my ultrasound- he probably thinks I am a totally neurotic weirdo). Here is my little blue book that goes everywhere with me nowadays:

And here is one page from inside, with my estradiol readings from all three of my IVF cycles:

Now, to sum up the past 4 days: on Friday we went in for an 8:45 appointment, where we saw that my follicles were continuing to grow but I was not showing a whole lot of improvement. I had 4-5 follicles measuring around 10mm. My lining was 6, which is thin but not terrible. I was disappointed, but later we learned my estrogen had doubled- which is a good sign. But it was still low, just 191, and you can see from the chart above that it was much higher my first cycle. 

We went back Sunday, and saw some improvement. My lining had gone up to 7, which is much better. Ideal for implantation is anything over 7, though somewhat higher is even better. As for follicles, they had really improved: I had six ones over 10mm, and two at 8.5mm, and about 4 under. They said I was getting very close. My lead follicle was 15.5*13, with some 13s and 11s. My estrogen came in at 489, which was a big step up from Friday. We were asked to come back again the next day to see about triggering.

So, we came back Monday, and things were looking even better. Lining was at 8.3, and I had a couple of follicles at 18 and 18.5 (lead one at 18.5*13.5), and a total of seven over 10mm, with six of those over 12mm. My estradiol came back at 765- a big jump, considering it was only 24 hours, not 48 hours like the others. 

To sum it all up, we decided to keep me on one more night of meds, but we dropped my Follistim to half what it has been. This morning was my last Ganerelix shot, and tonight I trigger at 7 pm. I go in for retrieval at 7:30 am on Thursday. Transfer will be Sunday.

I'm feeling really positive, much better than at the start of this cycle. This different protocol has led to similar results as my first cycle, but way, way better than my second cycle. Of course we won't know anything definite till retrieval, but I feel hope again. I also feel weepy- but that, of course, is mostly my high estrogen levels. I also want chocolate! And cookies! All the time! But I am trying to control myself  :)

In other news, my 97 year old granny is nearing the end. My mom just sent me this email, which is so sad. I had to put my head down and cry at work for a couple of minutes, but it's also such a sweet email too. My mom is wonderful and I hope I end up making this come true: 
"End of life is a very difficult thing.  I am hoping that the end of my mother's life will coincide with the start of my granchild's life.  Wouldn't that be a fitting gift of the cosmos? Did you know that you were conceived on my 32 birthday?  That is a cosmic gift too.

I am off to sit with granny for a bit now. 

I love you sooo much. you are wonderful.

xxxx ooo mom

Thursday, February 14, 2013

Feeling blue

I know my nurse said not to worry, but I can't help it.

We had friends over for dinner last night and that was a great distraction, but I'm at home today and B is in class till 9:45 pm, so it's a long day on my own. Luckily I have acupuncture soon, and that should help.

Today is also Valentine's and that's depressing, somehow. Everyone is posting adorable photos of their babies on Facebook and I don't think I'll get to have one to hold anytime soon.

Tonight I plan to spend the evening with some leftover squash, my kitty cat, and last week's Downton Abbey episode, which I am looking forward to.

Blah. Hope to get better news tomorrow about my estradiol and follicles. Right now I feel hopeless.

Wednesday, February 13, 2013

Day 5

This morning we went in for my first check-up since starting stims. It's day 5, which means I've had 4 nights of shots already. I'm on 300 Follistim and 150 Menopur. I feel fine so far. A little tired, but not bad. And that could just be that it's winter, and cold, and I've been very busy lately. 

Anyway, the nurse practitioner just called. She started the call with, "Good news!" And she seemed totally fine with it, but my estradiol (also called E2) is only 88. 

It was 13 last week. She said all that matters is that it's risen.

But I feel funny- I mean, it was 99 on day 4 at my old clinic for my first cycle, and then 44 that second time I did IVF. And this is one day later than they tested at that clinic. So this number is higher than my second cycle, but lower than my first. 

Oh well. Nothing I can do but go back on Friday.

I'm pretty calm this time. I just feel resigned. What will happen will happen. I mean, I want to freak out, but I know it won't help.

The next two days are going to feel very, very slow.

Monday, February 11, 2013

I hate you, or the ordeal of ordering medicines

Dealing with expensive IVF medications is awful. My first two cycles, I had to deal with a clinic that stressed me out almost as much as the actual IVF outcomes. Now I like my clinic, but the medication-ordering process has been a comedy of errors. Except  not really a comedy. More like an expensive and stressful disaster.

Basically, my insurance covers very little. They do cover monitoring appointments, at the specialist co-pay of $70 a pop, but they do not cover the IVF procedures or the medications taken in conjunction with IVF. So when it came time to order meds for this cycle, the nurse called them into a mail-order pharmacy for me. But then a woman in my support group with my same insurance told me that our insurance was covering her meds! Since I had already tried my insurance's pharmacy (Medco) a year ago for my IVF meds and been denied for everything except the antibiotic Doxycycline, I hadn't been planning to bother trying again. But when my friend's order will filled for just a few hundred dollars instead of a few thousand, I asked my clinic to call it again- just in case.

Well, as I fully expected, I was denied. I talked to someone at Accredo, which is Medco's specialty pharmacy. Confusing? Yes. I did not fully understand this then, but this is how it works: Medco is my insurance's pharmacy. You can get things cheaper through them than through going to CVS. The catch is that they mail it to you, so it takes longer. However, if it's a specialty (read: super expensive) drug, then they send it to Accredo. But for the consumer, it's seamless. They transfer the call, and you don't really realize you've been sent to a whole new organization.

So when I was told by Accredo that all my drugs were denied coverage, I took that to mean all of them. I mean, I did say "all of them" and she said "yes." So I ordered everything through Alexander's and paid $2000 out of pocket. I got another $600 of drugs from a friend who had leftovers. And that, I thought, was that.

But IVF life is never that simple. This past Friday, Medco called to tell me they were about to ship my meds. Um, what? Yeah, it turns out that Accredo had rejected my order for specialty meds but Medco was willing to fill my order for the non-specialty meds: the Doxycycline, another antibiotic known as the Z-pack, and the estrogen patches I'll take after transfer. They were willing to give me this for $46, rather than the $230 I'd already spent.

I was pissed, needless to say.

The explanation: they told me I'm denied, but I wasn't really. I was only denied the specialty drugs, but she did not clarify that on the phone with me and I thought she meant all of them. And then they wait a week- more than a week- to call me and say they will cover the non-specialty. So now I'm in negotiations with the fertility drugs manager to try to get reimbursed. Of course he's a total jerk and while he's admitted they weren't clear in what they told me during that first phone call, he also spent a long time arguing about how I should appeal every decision. This is stressful enough- I don't need to waste my time and energy fighting over this. And what cause would I have for an appeal? None. They don't cover IVF drugs. It's very clear, in writing, and I accept that. Somehow my friend's were covered, but even my nurse thinks it was just a mistake somehow. Lucky her, but it has no bearing on me at this time, and i have no logical reason for an appeal.

Meanwhile, the same day, I also received the FIVE denial letters in the mail, for the specialty drugs that they won't cover. That is what is in the photo above. FIVE letters, all several pages long, with the appeal process and a bunch of other mumbo jumbo. Really, Medco/Accredo? One letter with a list would surely have been enough. Talk about healthcare inefficiency!

Anyway, I can't waste any more time on this crap. I got my drugs, I paid too much but that's the way it goes. In all likelihood this is my last IVF cycle, and I need to focus on relaxing and staying calm during this one. And so far, I'm doing that.

Wednesday, February 6, 2013

Baseline: Good News & Moving Ahead

Yesterday was baseline, and I have good news about it. I had 16 antral follicles! 14 on the right, and 2 on my lazy left ovary.

For comparison, my first IVF cycle I had 11 total, and my second cycle I had 8. So this is actually DOUBLE what I had my last cycle.

Now, I know that antral follicle counts do not necessarily have a direct correlation with success of a cycle, or quality of the embryos that will be formed. But, having more is certainly better than having less, especially in my low-producer situation. And this webpage is giving me hope:

I don't know why I have more this time. I know that there is some natural variation that can be expected, and I also wonder if resting for several months has given my ovaries time to recover and heal a bit more.

In any case, I am feeling hopeful again. My last birth control pill was yesterday, B and I both started doxy today, and I start shots on Saturday night. My first ultrasound scan will be next Wednesday. I had a stomach-ache going in yesterday; I can only imagine what a mess I will be next week for the first scan! I have desperate, high hopes that this period of resting, my higher antral follicle count, and the new drug protocol (Antagonist) at my new clinic will all work to make this a successful cycle.