All is Well - Hard Things to Think About

Ramble Warning. 

Depressing Statistics for Women with AMA Warning.
VERY Uncomfortable Discussion about Chromosomal Abnormality Warning

I wrote this over a week ago, but was afraid to post. It's been on my mind for awhile and still is. Since this is a blog about my experience and feelings during my journey, the honest thing to do was to post it. 

After a year of infertility treatments and tut-tuts about my age from a multitude of medical professionals, I've become a little more sensitive than usual regarding my age. To compound the problem, a years worth of infertility treatments (3 IVFs in 8 months!) and the stress that goes along with them has left it's physical and emotional mark in more ways than I care to mention. Now I am faced with the added realism of doctors constantly calling me 41 BEFORE my 41st birthday, because they have to consider the age of the embryos  when they are born. Why you ask? Because that is what counts for problems that may arise.

In the land of infertility, 41 is old and can cause a multitude of issues - age related things that most of us women with AMA didn't think of when we started down the dreaded infertility path. Besides decreasing our ability to get pregnant, our miscarriage rate increases, as does the chance that there will be a chromosomal abnormality. This last part is the current worry area we are visiting. Depending on where you look, our odds of having a baby with a chromosomal abnormality is somewhere between 1 in 13 and 1 in 15. (Note this is with fraternal twins, much different for singleton pregnancies.)

On the upside, the odds that both will have an chromosomal abnormality are about 1 and 900. 

If you've gotten this far and are totally against fetal reduction in all cases - then you should stop reading here. I will have total respect for your beliefs and how they pertain to you, but I ask the same consideration for me. All of us in the land of infertility go through our own personal hell, and we really don't need judgement heaped upon us for the litany of hard things we have to consider every step of the way.

Since I am of "advanced maternal age" AND we are having twins, we are considered a high risk pregnancy and our surrogate has to see a perinatologist. We visited the new OB/GYN a few weeks ago (who won't be our actual OB/GYN, but that is for another post) and had our first visit with our Perinatologist last week. Building up to that visit, both my husband and I researched the heck out of the tests we would need to consider.

The consultation did not go well.  

While I didn't think about it before, our Perinatologist must be a part of the same religious medical group as the OB/GYN practice (not uncommon here in the south). This essentially means he Was. Not. Happy. when we were trying to get information about options if the worst case scenario happened and one of the fetuses has a chromosomal abnormality (CA) that we feel we could not deal with. These can range from things that would result in a stillbirth to death after a few weeks of life to some that we feel the quality of life would be extremely poor. Termination is somber idea for us who have fought so hard for life. 

At the doctor's appointment when discussing the CA tests, I uttered a question about "termination" and the doctor stopped short and very ADAMANTLY told me they DO NOT do that there. (Even our OB/GYN didn't act like he did.) Based on his attitude after that, we all began to have a genuine concern that he was misleading us on several counts. Tests he up-sold recommended to us (instead of amniocentesis) that we later found out may not be recommended for twins or donor eggs (which in this case, my eggs would be considered the donor eggs.) This is especially odd since I'm sure twins takes up a large part of his practice. Additionally, based on information we knew, some of his numbers for risk were off. (Example of that is below.) Finally, he suggested dates for the amniocentesis that would not allow us to get the information back in time (for GA law) should it be one of the items that we would consider termination. 

When I asked him directly about risk percentage of CA for what he was recommending - cell-free fetal DNA that tests for 3 types of CA - versus and the difference of the additional CA items discovered with amniocentesis, he assured me that miscarriage through amniocentesis was greater. (We do not have confidence that he was honest here.) 

My hubby says this is confusing how I say it, so I'll try to clear it up.

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(Chance of any CA (for 1 baby) in my age bracket with twins = 6-8%) - (Chance of one of the 3 types of trisomy that his test is for - variable X) 

Is this > (Risk for miscarriage for doing an amniocentesis (.3-1%)?

or 
is 7%-X > 1%

So theoretically, if the cell-free fetal DNA tests only 4% of the CA's, that still leaves us with 2-4%  untested risk. In my mind, that is a higher risk than the .3-1%  from amnio. This isn't even including the other things amnio tests for that are non-CA. That 4% is probably pretty close estimate. 

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All of this is a major problem, but to get a new specialist would could cause us to run past the time period that were are so precariously balancing in at the moment.  

Don't get me wrong, this is not something either of us takes lightly. I shouldn't even have to justify it as everyone has their own limits - and yet I still feel an overwhelming need to do so. We have gone through so much and if we had to make a decision like this, it would be horrific. But that said, both my husband and I are on the same page on what we would and wouldn't do when faced with certain results for certain tests. And our SIL/surrogate agrees as well.

Not only do we have to consider what we could handle at the birth of a child (death being a major one), but also as we age. Both of us have had a lot of experience with people important in our lives that have some very severe issues - both young and old. Enough that we wonder what will happen when everyone is much older and unable to physically care for them. With our siblings (and us) all in an older age group, the option of family being able to step in probably would not be available to our babies. Unless I left the burden to my son, which I don't think is fair at all. 

A child born with a severe chromosomal abnormality can have devastating effects. More than likely one parent will have to not work, which can be a big blow in income. Add the costs of medical and 1000 other things normal people don't think about, and any savings could be wiped out in a very short time. It only money right? Yes and while that may be true, older parents entering their 70's and 80's may have zero money left over to care for their child when they no longer can (much less themselves). They are then faced with the VERY REAL probability of a mentally and physically disabled child that will be sent to a state run facility. Knowing the child will spend the rest of his/her life potentially living in hell is just not something we are prepared to risk. 

So while I absolutely despise that we have to think about things like this, I guess I feel it's important to share. Because I think it's important we all know these things before we jump in.* That may not change our minds, in fact I can almost guarantee in most cases it won't, but maybe if someone is on the fence about other decisions (such as donor eggs)** then the information will be important to them. We all get so caught up in the idea and worry of having a baby, that we forget some of the other, very real, life changing concerns.

In my mind, there is no right or wrong answer with these tough decisions. I place no judgement on those of us that don't even want to know about things like this. Nor do I judge those who decide things differently than we would. In the end, we are all left with our own decisions and we must choose what we can live with 1, 5, 40 years from now - not what matters to outsiders looking in.

Sigh. I told you this would be a rambling post. We had such a small chance of getting pregnant. Heck, our chance of miscarriage was higher than our chance of getting pregnant. If we can just make it past the amniocentesis, then I will be able to breathe. For a little while at least. 

*In our experience, which is A LOT of different medical professionals, we really did not get enough information about all of the risks for my age. Really the only one that was relayed to us was our lower chance of getting pregnant. I'm not sure if we would have made a different decisions, but I think medical professionals need to do a much better job of informing their patients about these risks. 

**Even this does not guarantee that all will be fine and dandy as many here in IF blog land can attest. 

Third Party Coordination Goes Awry - Meds Edition

A few weeks ago I had to figure out where to order my and my surrogate's meds from. ACRM recommended 3 pharmacies and called the Rx in to all 3, allowing me to compare prices and such. One of these pharmacies, Village Fertility Pharmacy, actually had the forethought to test my insurance coverage even though I told them it wouldn't be covered. Thankfully I was wrong, so we went with them (a huge bulk of mine were covered!) I ordered both mine and my surrogates meds, shipping to our respective homes. Mine took 1-2 days. 

Since we paying ACRM extra money (~$3100) to do "third party coordination", I naturally thought that if I ordered the meds, that they would do more of the "coordination" and stuff. Honestly, they have not done a good job with this. Repeatedly I feel like I'm running around like a crazy person doing the bulk of the coordinating. With my ADD and new job, this is terrifically difficult for me. 

When my GC came in for her appointment on Monday, they gave her a written Rx for her meds and told her to fill it. No one thought "hey, we've already placed an order with the IP a few weeks ago, maybe we should check on that." The reason I found out? The nurse copied me on an email to the GC that said "You don't need to pick up the Lupron in your original order." All of a sudden I was like "Is this a double order???" The nurse emailed me at first and said that maybe the fertility pharmacy sent the Rx to Kroger. I asked my GC, and she said no - no one told her  about the previous med order and ACRM just gave her the Rx when she went for her baseline ultrasound. She was suppose to start meds that day and not one red flag was thrown up. A few back and forth emails, and it was apparent that no one on their end was really keeping tabs on this. 

Truthfully I should have checked that her med order went through smoothly weeks ago when I got mine. I had informed my nurse that I had received mine, but then got violently ill and forgot to double check if our GC got hers. I had no reason to believe she didn't and I guess with all the balls I am juggling, that was another one I dropped. I'm terrible at organizing these types of things, which is why I didn't mind paying the extra money to the clinic to do so. And I really don't consider $3100 a small fee to do this. As I am sure you have already guessed, our GC did not receive her meds from Village Fertility and it upsets me that I feel like I'm having to do the bulk of "third party coordinating" while paying them a chunk of extra cash. (Yes, I know some of this goes towards the medical aspect, but we were also told it goes towards things like this.)

All of this resulted in frantic phone calls, in the middle of a workday, with my very public cube, to multiple people. This is sucktastic for me to have to do at a new job. Village Fertility Pharmacy said they did not ship the GC order because they had left 2 messages to set-up a profile for the GC and she did not call back. My GC said she never received the messages and I 100% believe her. I asked Village why they didn't call me when they couldn't reach her, and they admitted they should have. (As a side note: I am very forgiving when people admit mistakes and then do whatever they need to do to correct it - Village did this.) Village apologize and after I altered the order (minus the no longer needed Lupron and minus the already procured Estrace), they were able to ship out overnight. 

In the long run, I think the mess-ups of everyone (me, the clinic, and the pharmacy) saved me money, but that still doesn't give me a warm and fuzzy. Especially mid-cycle. I'll write more later on my HUGE upset about a screw-up in charges. It's a freaking shame because we adore our doctor over there. 

Cycle Limbo Part 2: Return of the Cycle

UPDATE

Nurse called. As long as my SIL can come in tomorrow and get an ultrasound - then we are proceeding as planned. Whoooooooooooooooooshhhhhhhhhh.

When the nurse initially called, she kind of presented it as my option with the knowledge that if my SIL's lining isn't thick enough upon transfer day, than the transfer won't take. Normally they want 11-14 days of the estrace to insure a thick lining, but they don't want to start the estrace until a untrasound and blood work on her confirms everything is a go (eg, no cysts, hormone levels good, etc..) My last cycle gave me only 12 days before transfer. She asked me if I wanted to go forth.

At first I asked questions about how would we avoid this next time if we waited. She said that normal protocol was to control the GC's cycle with BCP/Lupron overlap. Then I asked the follow up question that surprisingly, I think was a bit unexpected: why did we not do it this time? This was a little harder to answer, but the short of it was - they/she didn't want to start medications (including BCP) until all the initial testing had been completed. Of course my logical reply was: Does BCP effect the testing. Answer: No.

So getting past all that, I realized she expected an answer from me about whether I wanted to start or not. Here is where I lost it. Crying the cry only someone that is mildly dehydrated and still slightly sick can manage. My guess is that over the phone it sounded somewhat like a choking horse.

Normally when I get really upset, my sensibilities leave me, but they did not this time. I put the question back to her: "What you are telling me is that I have to choose between my chances lowering further from waiting a month, or take a chance that the lining won't be thick enough." She said she would speak to the doctor and call me back.

I laid the options out like that for a couple of reasons, but the main one was that I really didn't know which is riskier. One would think that a month wouldn't make a world of difference, but women in my age bracket know differently. My AMH dropped drastically in a very short period this year. Conversely, I don't recall our surrogates getting estrate (or similar) that long in India prior to the transfer, so I'm not sure if it is a booster/fail-safe thing or what.* From a medical perspective, since my GC and I started menses within 24 hours of each other, one would think at 29 years of age, her lining would be reasonably thick for ovulation at the proper time anyway.

After speaking with the doctor and both reviewing my records, the nurse called back. She stated that as long as my GC could come in for ultrasound tomorrow (she can), then we would continue the cycle as planned. We nailed down a few of the other details (like when I would start my big gun meds) and now I feel a crapload better than I was feeling. Earlier I was trying not to let panic surge, but I was having a hard time. I would have waited another month if I had to, but honestly, I am ready for this to be over and done with. The emotional and physical, even things you don't let anyone else see, is astronomically draining.

*Originally I thought the Indian surrogates did take meds from the beginning (from my own research of surrogacy), but I had my husband ask the Indian lady directly and she said that she only been told to start medication a few days prior to the transfer. My husband and I now debate if this was a protocol thing, problem with the surrogate, or other. 

Mad Dash to the Finish Line

I don't know who Mr. Pipo is, but this image rocks.
You can get it here: http://commons.wikimedia.org/wiki/File:Mr_pipo_clock.svg

Yea, yea, yea. The ole "I've been a blogger slacker" post. The "I've been too busy" post. The "Too emotional with all that's going on in the world" post. Whatevs. Get to it.

We are on full throttle for surrogacy to start next cycle - which means hopefully the end of this month. (Crap - no drinking on NYE!) I've been a mess trying to get everything done in time, but we really wanted to pay as much as we can this year for tax purposes. Since I didn't work for 8 months this year, much more is applied. 

Plus, let's be real, every month for me counts now. My AMH is like .7 and my FSH is 12.7. Not good. Not horrible, but not good. This will be the last shot with my eggs - period. If this doesn't work I'll crawl into a hole until we are able to consider the donor egg option. 

I have to say that having my first 2 surro cycles in India did not prepare me for the complicated mess I would  have to endure here in the US. In India we just had to show up and they directed us for everything else. Here we are on are own and have to stay on top of things like a frenzied squirrel. Crimmy, I'm even going to have to give myself shots. With my ADD, this is not encouraging. 

Some of the things I've been juggling: 

• Coordinating 4 individual schedules with tight deadlines on when specific things have to be done. Guess who's schedule always gets the shaft (to be expected.)
• Countless phone conversations occurring middle of the day, for a length of time, that has me leaving my trusty cubicle to go hide talk in a conference room. Lest my cube mates get to hear me go on-and-on about the FDA required STD tests I have to take. "Yes, I need you to add Chlamydia  Gonorreia  HIV, Hepatitis  PPD, ... to my blood order. Oh I'm sorry, you want me to repeat that LOUDER for the 3rd time? Ok."
• Working with 3 different pharmacies to find out which can give me the best price, without sacrificing reliability/comfort level of getting all the right things at the right times. All of this again on the phone during business hours. All pharmacies have been given the Rx by doctor and are ready to ship ship ship. "Yes, I'm confirming the order. OH WAIT, you are with whom?"
• Phone interviewing lawyers with experience in surrogacy to see who can meet our tight deadline (are you sensing several themes yet?) 
• Going BACK AND FORTH with my new primary care physician office to try and convince them to add STD blood tests to my blood order for my physical. This way there is a chance insurance will cover it, but I had to go back and forth with them for about 2 weeks. Otherwise it's a couple grand out of pocket.
• Getting a physical so that additional items will be covered under insurance that wouldn't under my RE.
• Multiple doctor visits. Blood drawn yesterday AND today because I had to use 2 different labs. Trying to juggle all these without raising a flag (hopefully) at my new job has been an incredible feat. I'm a contract employee and want to go perm when my contract is up in April. 
• Psych evals - and while I appreciate the "concern" over my emotions, it really was a total waste of time/money for my husband and I. Everything that was discussed in the group session we had already discussed with them privately. I totally "get" why you would want to have one with the surro and the surro spouse, and even a group one, but I don't think every IP couple needs to have this done. Especially if you've been through the process before (even in another country). Thankfully the doctor put the ones for hubby and I as a "family counseling" code - hoping insurance will at least cover that. 
• Trying to get surros insurance documentation to make sure there is no surrogacy exclusion. Not their fault, but company's fault it is taking so long. 

There is more I am sure, but between balancing that and everything else in my life, my brain is kinda fried at the moment. I still have Christmas shopping to complete. Hell, I haven't even gotten all my cards out yet. 

On a Happy Happy note. Insurance covered a HUGE portion of my fertility medications. The pharmacy (Village Fertility) checked on a whim for insurance coverage (even though I told them it wouldn't be covered) and apparently a big chunk was. Had to pay just a little over 1K out of pocket - which is awesome since it was looking to be about 6.5K. She explained that even though we have BCBS for medical (THE SUCK for infertility treatments), the pharmacy is different and is quite good. Covered under Medco, formerly Express Scripts. I guess the lesson is: always check to see if insurance will pay. Even when you are sure they won't. 

On an unhappy note - I had no idea that the attorney was going to be so much. 2500 for the surro agreement (REQUIRED) and then another 4K if we make it to the second/third trimester. They have to go to court and petition that our names are put on the birth certificate. Otherwise we would have to adopt our own child. GAH! Oh well, I guess we should totally HOPE/PRAY/RAIN DANCE that we are so fortunate as to get to shell out the money in the future. That would be a good thing - right?

That's it for now. And to prove how busy I am at the moment, I'm going to publish this after only "checking" it once for mistakes. That's HUGE for me. Normally I read it and change it 10x. THAT'S HOW BUSY I AM. Or crazy. You choose. 

Where Can I Get My Drugs?

No seriously. Who has the hook up? I need advice on who the cool [read: GOOD], reliable, fast online/mail order companies for fertility meds? Fairly certain that the email I just read from our clinic was saying that I will need to order mine (and our surrogates) in the next few days.

Here was the reply when I asked about getting the meds:

Once you are ready to get started, I will send this prescription to a mail order pharmacy and they will call you to set up payment and shipment of the medications.  You will need some of them within 14 days of starting a cycle.  The others you will need a few weeks after that.  I would recommend getting the meds as soon as you are ready to proceed.

Honestly I don't know if that means 14 days before my next cycle or 14 days after my current cycle start - which now that I think about it, is the same thing really. Since my period started on Sunday, that means I need to get the full list and make the purchases.

I hate having to rush rush rush everything, but it looks like that's where we are now. Have no idea about what happens with being able to claim this on taxes for anything that spills over to next year. I know you have to reach a minimum percentage of your income to claim medical, but can you only claim what is OVER that percentage, or do you to claim the first part too? I'm trying to figure out how vital it is we make our Dec 31st deadline. It's vital from an old eggs perspective, but I don't know how much it will end up costing us if we can't claim it all on our taxes this year.

Any tidbits you guys can throw my way I would really appreciate. The last two days of trying to balance 4 individuals' schedules for treatment, make sure everything is asked/answered for our upcoming cycle, work, getting a plumber out (yay! We have water!), make a community meeting that we will be a named plaintiff in, more work, AND cart my 12 year old Min Pin back and forth to the vet for dental surgery (9 extractions!) has my head spinning.

(BTW - my Min Pin is a total hillbilly now. All of his front teeth, bottom and top, were rotting due to age and not enough space, and had to be removed. He won't show me now and is working the cheese angle.)

No wonder I need a good hook up for meds. Give me a heads-up and I'll keep it on the D-Lo. 

Creme de la Creme

I love reading all of the blogs on my current roster, but I'm always interested in reading more. Have a great blog? Or maybe just a post you dug down deep within and want to share? Add it to the list here.

Get your submission in for 2012 ASAP. The deadline is December 15th. Personally I just picked one on the fly, because I tend to forget easily and knew if I didn't submit right away then it wasn't going to happen. What are you waiting for? Do it! You started a blog - now share it with others. 

BTW, if you are not already familiar with Stirrup Queens, I highly recommend it. You can get a good highlight of other blogs that are available that may offer great advice on something that you are dealing with. Melissa has organized all the different blogs into "rooms" that you can find here. Here is an image connected to her site to give you an idea of the different rooms (though if you click on the link you can get a MUCH better idea of the level of granularity that goes into each room. 

You have questions...We have answers

Actually I need your answers, so if any of this sounds familiar please post your experience/knowledge in the comment section.

On Tuesday night, I attended a seminar at my old clinic ACRM, here in Atlanta. I described some of it here and also pinky-swear promised to post the questions I posed to the new doctor during the Q&A session. (Ok, I didn't really pinky-swear, but I wrote I would, which is almost like the same thing.)

So here are the questions I asked.

1.) Can endometriosis affect the outcome of an IVF cycle if the woman is using a surrogate?
A.) Yes it is possible. [Sadly I have forgotten the reason behind it. I believe she did mention that there could be an effect on the eggs in a follicle and thus less eggs retrieved, but for the life of me I can't remember if she said certain things or if I am confusing it with stuff I have read.]

2.) Besides cost, what are some of the downsides of using ICSI?
A.) There have been studies done of the offspring conceived by ICSI and it was noted that the male children had a higher rate of sperm problems. Whether this is a cause of the ICSI or due to genetics (ie, the father having sperm issues thus ICSI was used) is unknown. 

[This one I already knew the answer to, but I wanted to make sure there wasn't anything else I didn't know about. Primarily because our clinic in India uses ICSI as a default with no extra charge (unlike here in the States).]


3.) How long after a laparoscopy, do you need to wait to start an IVF cycle?
A.) Generally the recovery time is short and we like to do the next cycle as soon as possible. Especially if the woman is older.
[I know they can't do it the same month as IVF, so I'm guessing that means you just have to wait until the next month.]

I'm getting conflicting statements about #1 and I'm a little concerned about it. Everything I read regarding endometriosis and IVF revolves around the woman carrying the baby, there is very little info for women using a surrogate.

My new OB/GYN did not seem to think that endometriosis would be a problem for me (with regards to lowering my IVF success rates) since we weren't using my uterus. In fact he thought there was a low likelihood that I had it since some of my symptoms were relieved with my cryoablation. He advised for me to find out if the cyst I had aspirated during my first IVF cycle was a chocolate cyst. He did mention at the end of our lengthy consultation that he did not specialize in reproductive endocrinology, so I'm guessing that was his out if he was wrong. The only surrogate cases he probably has is if someone walked into his office who IS a surrogate and already pregnant. Also this WAS before they locked me in the bathroom.

Conversely, Dr. GS on SIRM's forum indicated endometriosis could cause a problem in my case, but it was hard to tell if he understood that I would not be CARRYING the child. Even though I definitely mentioned it. (I am awaiting on a response for that clarification.) He mostly pointed me to articles that either talked about the problems in the woman's lining (and toxins activated in it) or in one case a long article he wrote with one tiny sentence that suggested a gestational surrogate would be a better option. That seemed to contradict his reply to me. Anyhow, I've awaiting clarification.  [UPDATE: Dr. GS did reply and state he missed the part about gestational surrogacy. He said that in the case of immunologic implantation dysfunction, it wouldn't apply to me, but an endometriotic cyst would affect egg quality.]

The REASON I'm even asking is because I don't know if I should be tested for it. We have decided to cycle again, but this may be my last one and I want to optimize my chances. If endometriosis can affect my eggs pre-aspiration, then it seems like a good idea to be tested and get any problems fixed. On the FLIP side, scheduling and doing a laparoscopy  plus recovery time could add a couple of months to the process - thus lowering our chances. PLUS some doctors advise against laparoscopic surgery for poor responders as it can further lower your ovarian reserve and raise FSH levels.

What to do, what to do. Time to go have a real one-on-one with our ACRM doctors again.

As I said at the beginning, feel free to chime in. 

Here we are again - 2ww

Formula for moment of inertia
from: http://www.wikipremed.com/image.php?img=010105_68zzzz111100_12002_68.jpg&image_id=111100

I have about 100 things to write about, but right now I'm stuck with inertia over our pending results for our 2ww. My husband is out of town until Saturday night, and as much as I would like to say if the email comes tomorrow than we will wait to read it together, it's not gonna happen. If the email comes, I'll read it. This last week I've felt like a pressure cooker with every emotion beginning to boil up.

For some reason I thought it was coming on the 6th, but my husband thought it was the 7th or 8th. He remembered that the clinic is normally closed on Sundays, so if we don't get an email tomorrow then it will probably be Monday. In fact, if it isn't in by the morning, then we probably won't get it till Monday morning because of the 9 hour difference: surrogate tests should be done by my late morning time.

Truthfully, if it's bad news, it's probably best that my husband and I don't read it together. Like many men, he doesn't do well with tears and I know that this entire process is probably harder on him then it is me. At least mentally. Never-the-less, if it is bad news then I will surely cry and the last thing I need to add to his woes is my tears. Last time we went through a cycle it was super hard for him with every up and down and when we got the bad news, we could barely speak. I had prepared myself better for the bad news, but not enough that I could console him.

Last time I didn't even tell my siblings and close friends when we got the bad news. I just didn't want to talk about it. My husband called his family and I emailed my mom. She was pretty sad, so I stayed strong. A month or two later everyone else eventually came around and said "I guess it wasn't good news." By then I was already in  mode for my new cycle and had completely forgotten I didn't update anyone. This time we've told more people and gave promises of an update when we find out.

The update is hard enough, but it's the feedback that will really get me. I just don't want to have to have one-on-one conversations with each person on how they are sorry it didn't work out. Look at me. I'm already thinking the worse. I can't help it. Need to think positive thoughts. I left India on a super-positive note and I need to keep it going.

Sigh. Easier said than done. I have so many things I need to work on, but can't seem to do any of them. 2 ww. Bring it. 

Spot Check Part 2: Calming down

Right now I've calmed down enough to realize my spotting yesterday may  have been caused by the sonogram on Thursday. It has happened before with a sonogram. I don't know why it didn't occur to me till this afternoon when I was at a baby shower and was relieved to see no blood on a ladies room break. (Sorry to be so graphic.)  Or it could have been a minor nick on the cyst. I think if it had burst at 5cm, then there would have been a lot more blood.

Must have been pale as a ghost last night and my wonderful hubby helped calm me down. All I could think of was how I had some how messed up my last chance. I'm still a little worried, but not massively freaked out like I was last night. Tiny, tiny spot this morning, but then no more blood today. I was so freaked out last night I took an extra BCP. I may take extra ones till the 5th just to be sure.

Thinking that my side effects (like dizzy) may be merely from the cyst itself. (Or the freak out!) Not surprised that I had one as I had started cramping on occasion. I'm not bleeding today, so I'm hoping and hoping that the sonogram caused it. If I'm ok till Monday, then I will be able to breath a sigh of relief. If I'm not, I will contact Dr. Patel in India. As long as I am not bleeding, I will try not to worry.

In other news, if all goes well, I will have my cyst aspirated in India. Not ideal (will be alone initially and I will have to undergo general anesthesia), but I don't have much of a choice. Was able to confirm that my OB/GYN had been talking about laparoscopy and Dr. Patel said that she would have to cancel the cycle if I did that. Dr. I's staff (and he) were using laparoscopy and aspiration interchangeably (they most certainly are NOT) and after a series of confusing discussions with his staff, I was finally able to clarify with him on Friday morning. Apparently he DOES NOT aspirate, and told me that an infertility clinic would have to do that.

We have a really good infertility clinic here (ACRM) that we have used for all of our initial tests, but the chance I would be able to get an appointment in time are very slim. Not to mention that it most certainly WOULD NOT be covered under insurance. My old company insurance covered some things, but my husband's BCBS covers next to nothing for infertility. The mere fact something is done at an infertility clinic usually means they won't pay for it. The money we have spent at the infertility clinic does not even go against our yearly deductible.

Just as well. My husband did not have a warm and fuzzy about my having it so close to international travel. And my travel to India is not direct - it usually takes about 36 hours of travel time. I don't sleep well on planes, trains, or automobiles (all of which I have to take), so it's best to do it in India. Dr. Patel said she would do it and she did it last time. Pretty sure she didn't even charge us extra. Hopefully it doesn't affect the cycle.

Please keep your hopes/prayers/warm wishes for me that it was just a result from the sonogram and that I will have a successful cycle in Anand. 

An argument, a wedding, and a memorial

from: http://www.ghank.com/sad-pictures/

Last week had it's ups and downs that melted into this week.

1.) An argument
Hubby and I had a big fight about if we will try again with my eggs after my second treatment in September. He's of the opinion that if I don't have a significant change in number of eggs retrieved, than it is pointless to even try. I'm of the opinion that it takes at least 2 cycles to even know the best treatment path. Truthfully, I see his point, but we really didn't need to GO THERE until we see if I improve at all. I need the hope right now.

We are going back to our original clinic. We had to make a decision and truth be told, our other India option did not get back to us with information promised; even after reminded. In fact, after the reminder I was basically told that the original person that was getting the information just had a baby and no information on if someone else would be getting the info or how long I would have to wait. I'm 40 years old and I really can't wait - hoping that they will get back to me. Every month lowers my chances. It's a shame because I really thought we would be going there instead. Maybe we will if they ever get back to me and IF I show improvement; two big ifs.

2.) A Wedding
My little (half) brother was married last weekend. The only reason I put "half" is because of the #3 part of this post. He is not part of that side of the family, even though he 100% part of mine.

Any how, the wedding was great and I could not be happier. He asked me to be the photographer and I happily acquiesced once it was known that I only "play a photographer on TV". Expensive equipment != good wedding photographer. The wedding was small, but really wonderful and I was able to spend time with family as well as people I have not seen in a really long time.

I spent the two weeks prior practicing with my camera and now need to spend a fair amount of time editing the wedding pics I have. Very critical of myself, but I hope they like it.

3.) A Memorial
My father died when I was 3. I won't belabor all the wah-wah tragedy of how it affected my life, but I will say this: with the exception my Grandparents and 2 others, the rest of that side of the family (which is large)  has pretty much ignored me most of my life. What is that saying? "The opposite of love is not hate, but indifference."

Last fall my Grandfather died and I was fortunate enough to be able to say my goodbyes by flying over to Sweden a few weeks prior. My Grandfather was the closest thing I had to a dad growing up. There was a funeral in Sweden, but half of the ashes were kept to be delivered to the US, as all of the children and grandchildren live here. In typical fashion, my family consulted neither me nor my older brother about availability for a memorial date. We were told last week that it would be in Sept.

While I tried to explain that I would be in India for medical reasons in September and asked if it could be rescheduled, I was informed that reservations had already been made by others (only a day later) and the date was chosen because it had the best weather for NC. Great - now I fall below weather. For the first time in my life, in a long, but respectful manner, I told them that their lifetime apathy towards my father's side of the family (my brother and I) was unacceptable. As the good little, quiet girl, I'm sure it has sent ripples throughout the family.

I don't pat myself on the back for adding grief during a hard time (as one Uncle put it), but for my own sanity it had to be done. Grandpa died last fall and they have had plenty of time to contact us instead of "oh freaking well - this is the date we choose - too bad for you." My grandfather told us we were to be considered as the stand-in for my father, and we have never been given that respect.

Maybe since I've finally said it, I can move on. Maybe this is the wake-up point where I tell myself that I need to make sure I'm not an absentee family member to my nieces and nephews. Maybe I won't keep myself up at night wondering why the hell so many didn't give a damn for so many years. Maybe I can accept that is our role, I've had my say about it, and concentrate on those around me that have CONTINUOUSLY SHOWN love as long as they have known me. Maybe. 

As promised, my little communication rant

Frustration: I haz it

Fair warning: I'm PMSing and frustrated. Anything remotely drama-queeny is not my fault. 


I am getting frustrated with the communication issue with our clinic. Have done enough research to know that our doctor is super-duper busy, but that begs the question: why doesn't she hire additional staff? A case manager would be fantastic. 

The doctor uses a yahoo email account, and from what my hubby says, yahoo doesn't give the thread of all back and forth emails. Essentially that means I am emailing the same information multiple times, even though I can see (with gmail) that the information is all there. 


Her: "Send me your results"
Me: "They are at the bottom of this thread."
Her: "Ok. Then please send me your results" 
Me: Sigh. "Ok. Here you go. Can you answer these 15 questions for me."
Her: "Yes, but only after a few days and only with one or two words answers."


2 weeks later...
Me: I have a couple of quick questions.
Her: "Ok. Send me your results."
Me:  "Ok. Let me go stab my eyes first." 


Is this going into a case file? Maybe she just doesn't have time to look at everyone's file when responding to the hundreds of email she gets (she personally responds to all emails herself). Again, this is where a case manager would be prime. Or Sharepoint. Or somethin. I hate to be the spoiled American, but jeez. 

Actually it wouldn't have even bothered me except some important information almost slipped through the cracks about when I am supposed to start BCP and our arrival date. At least it seems important. After a few unclear emails, where I literally wrote "just to clarify" on each one, it was discovered that we would need to take BCP for an extra day to be in sync for my arrival. I have no idea what the consequences would have been with me being off sync with the surrogate by 1 day or starting the IVF cycle a day later. Maybe nothing, but maybe something. 

When I don't get a exact details and clarity up front, I get super anxious. Like super-duper anxious. More than the average person. I have to keep important information in an easily accessible digital format (thank you Evernote) that I can access no matter where I am, as I sometimes have what I like to call "processing issues" (don't ask). This make me prone to be an "annoying patient" because I need uber clarity and a high level of granularity.  Had I started this "clarity" routine earlier in life, I would have saved myself tons of money and a big chunk of my sanity. Let's just call it "lessons learned". On the flip side, it make me wonder if hyperventilating is a good relief option when I don't get it. "Paper or plastic ma'am?"


I've had to reign these OCD eccentrics waaaaaaaay back based on my husband's advice, so as not to offend. Something about doctors getting offended when patients questions them or something; I don't remember because I didn't write it down. "Make sure you write things like this...." OMG A SHINY BUNNY! That's like a double rainbow!

My in-laws repeatedly tell me on the phone "take no tension!!!" I wish it were that easy. Things like this make me go bonkers. Bonkers is not good. I'm PMSing and the weight of everything that is going on is ringing the doorbell. I don't even have my pants on. Or coffee. I'm not even making sense now. 


At least her email didn't bounce back again today like it did yesterday. A month from now I will be in India again. Holy crap. 


UPDATE: Crisis averted. She has responded and now I feel much better.