Monday, April 30, 2012

What's next


After the results get out, everyone wants to talk, everyone.  The problem with this is, THERE IS LITERALLY NOTHING TO TALK ABOUT.  You aren’t pregnant, so technically, this is just like last month, except that this month, we paid a lot of money for me to get my period.  The funny thing is when we were about to go through IVF, everyone had a success story to tell me.  Now that IVF failed, these same people had IVF fail stories to share.  In my opinion, your word is officially crap, and I no longer want a pep talk from these people. I think the nicest words that anyone actually said to us during all of this was… “Man/Damn/Oh my God, THAT SUCKS!”  because for once it was honest.  This situation does suck.  I know people mean well, but while we are going through the worst time in our life, hearing pep talks about other people’s good fortune doesn’t make me feel better, it makes me pissed off that it isn’t happening to me. 

So after you complete your IVF cycle, there is a post IVF appointment for you to discuss what occurred, or in our case, what didn’t occur with the doctor.  She basically said we could do IVF again, next time, they would double my medicine (all I hear is double the cost), and it appears that besides me not responding to the medication, that things were going great up until the incubator.  She told us that they could use a different incubator that has a different % of oxygen and we could hope for better results.  What exactly does “better results” mean?  I don’t think I got into it, but the point of IVF is to create a blastocyst at the end of the cycle.  We didn’t get any of them, NONE.  So, does that mean we now get 12 embryos that die in a dish, because technically that would be better?  I could think of a million other scenarios where the outcome is still technically better than the last cycle, but we still end up in the exact same spot. We told her we were interested in embryo adoption, and she gave us a packet of an agency they work with.  She also asked us if we wanted to talk to the woman in the office that helps with the financial planning of all of this.  Again, we are already at the office, we might as well hear what she has to say. 

She was great; she tried to find a way to help us out.  She told us that she would talk to the IVF director and see what they could do.  She would get back to us.  I think we were excited about doing another round of IVF.  She did eventually call us back.  The director offered us a deal, we would pay half for another round of IVF, plus the full cost of drugs, and in the event that a child is born, they would ask for the remaining half of the IVF cycle.  Well, we were almost sold on this.  I think we went back and forth on this for a while.  We tried to figure out ways to get the meds covered, more phone calls, more waiting, and more thinking of every possible thing we could do to get these meds covered.  Tom and I talked; if we could get the meds covered we would take it as a sign that we would do another round of IVF.  If they weren’t covered, we would move forward on embryo adoption.  I know, such an important decision left up to fate, but honestly at this point, what else can you do?

With embryo adoption, you are adopting an embryo that is already at a blastocyst stage.  This is something that we failed to achieve.  We are bypassing all of the messy costly uncertainty of IVF, and getting the ultimate end product that you would hope to achieve, a blastocyst.    For those of you who ask, and I know you are wondering, "Why don’t you just adopt?"  To that I reply… WHY DON’T YOU JUST ADOPT?!?  Unfortunately, adoption is very expensive.  It is very time consuming.  Also, if you haven’t noticed, we have very bad luck.  I wouldn’t be able to survive someone coming into my house and taking a child I raised simply because they changed their mind.  I don’t want our story played out on Lifetime television.  Later down the road, that may be something we attempt, but for right now please excuse us for not wanting to go through adoption as our first choice.  Infertility is a journey.  Each person is different.  What works for one, might not work for another. 

Do you ever feel like you are just constantly swimming upstream?  Constantly fighting the currents?  Struggling, not just with one issue, but in every single arena in your life,  EVERY.GOD.DAMNED.THING is difficult.  Almost like life is telling you, “Bitch, you are headed the wrong friggin way!”  Then you change course, and everything just works out.  I think we just got to the point where we wanted to shout to the universe… “WE HEAR YOU!”  It’s hard to let go.  In this case, we are saying… we are giving up on having a biological child, which was a very difficult decision.  Does that mean in the future we won’t change our mind?  No.  For right now, we believe embryo adoption is the right thing for us… and so, for right now, we have to go see a lady about some embryos!   (Words I never thought I would say)



Saturday, April 28, 2012

IVF

I went to the doctor’s for an IVF information session, it was December.  I knew we were going to do IVF in February.  What I don’t know is why it came as such a surprise when I was told that I had to go on the pill immediately.  In order to suppress your hormones for IVF, you have to go on the pill.  I was going to an IVF information session, so it really shouldn’t have shocked me.  To me, hearing I had to go on the pill meant, GAME OVER you aren’t going to have a child naturally.  You aren’t going to pee on the stick.  You aren’t going to get to tell your family you are pregnant the way everyone else does.  I remember holding my breath until I left the office and crying.  I just couldn’t believe that it had come to this. 

I think after a freak out session, we were ready to move forward on everything.  We had been planning for all of this for months and months.  It was finally here.  So then we got our IVF drugs delivered to the house.  Did you know that they just deliver $7000 worth of drugs to your door, no signature required?    Right after we signed the contract for the IVF, we met with the doctor.  It was there that she informed me that I am low on a particular hormone (anti Mullerian hormone, I think) and that this indicates that I have a low egg supply.  To counter this, I would receive much more of the stimulation drugs than a normal person my age.  Already, things weren’t sounding so good.  After that, we attended a session where they teach you how to administer the drugs.  It’s all very stressful.  Neither Tom nor I are trained in this arena.  Here you are at the doctors and she is just running through this like it’s just another day.  One shot of this, another of this.  Then you mix this with this.  This shot you have to give at exactly the precise time.  If not, you mess up your entire IVF cycle. It’s very stressful.  So we were handed an instruction packet and sent on our way.  We began shots on February 17th, a Friday.  On the following Monday you report to the office in the morning.  You get an ultrasound and do blood work.  The ultrasound is done to look at your ovaries.  Each egg is found in a follicle.  Although an egg is not visible by ultrasound, the follicle (the sac that holds the egg) is.  In theory each follicle that they see in the ultrasound should hold an egg.  During this first ultrasound, I knew we were having a problem.  She first went to look at my right ovary, there were two follicles.  Based off of someone my age, there should have been about 10 per ovary.  I tried not to freak out.  She looked at the other ovary, there were 7.  So all in all we had 9 follicles.  I knew we were already at a major disadvantage.  During one of my phone calls from the nurse, the lady told me to continue taking 350 units of Follistim.  I told the woman that I was instructed on my sheet to take 300 units of the drug.  Well it turns out it was a typo and I went through my entire cycle taking the wrong dose.  No additional follicles developed during the stimulation phase.  We had 9. I remember overhearing a girl in the office tell the nurse that she had gone through 3 cycles and been canceled each time.  I remember thinking to myself, be thankful for your measly 9.  During several appointments, the ultrasound tech/doctor would inform me that “you aren’t responding to these drugs the way we would like for someone your age.”  That left me feeling great, but there is nothing that I could do so I shrugged it off.  Each follicle grows to about the size of a quarter during this stage.  So it is quite uncomfortable by the time you get to retrieval stage. 

The point of all of this monitoring is waiting for these follicles to get to a mature size so that the eggs will survive.  When you have almost reached go time, you get a magical call from the doctor calling to tell you to take a trigger shot at a very specific time.  Ours was at 10 pm.  You have to be exact on the timing because if you aren’t you will ovulate before they are able to perform the procedure, and everything is a waste.  So naturally I come home super excited because I’m so uncomfortable at this point and can’t wait to get these things out.  Well I was met at home with a very sick pup.  Lucy, was throwing up, wouldn’t eat, and had blood in her stool.  We had to take her to the emergency vet immediately.  We also had to take our meds with us because I needed to get my shot at 10pm.    We got to the vet at 9, waited for the vet, nothing, it was almost 10, we start to prep the trigger shot, and it had a mixing step.  Naturally the vet walks in as I’m about to get a shot in the butt.  We look like drug addicts, it was a complete mess.  Come to find out, Lucy was severely dehydrated and needed to stay overnight   I just looked at Tom and started to cry.  I didn’t want to leave her there.  It was awful.  Lucy stayed, got her fluids, we got another giant bill, but she came home the next day.  So that was great news. 

The next day was the retrieval.  I was told this was a simple procedure.  As you go to the office you start to see patients over and over also going through IVF.  So when Tom and I walked into the building, I immediately recognized a girl being wheeled out.  This girl looked rough. Tom can confirm that she actually looked like a burn victim.  She looked barely conscious.  She had a blanket on her head.  She looked worse than I felt coming out of my real surgery.  Tom and I looked at each other and I just started freaking out.    I’m pretty certain I had a panic attack of some sort.  I was expecting this little procedure.  They whisk you in the office, then the anesthesiologist talks to you, you get changed, and they take you in.  I think from seeing that girl to laying on the table was about 10 minutes.  I honestly thought I was going to die.  They give you drugs so you really don’t feel anything, and the procedure wasn’t a big deal at all.  She was able to retrieve 7 eggs.  She informed me, again, she expected someone my age to have more, but that hopefully these 7 were of good quality.  They were going to fertilize the embryos that day.  Of the 7 eggs, 6 fertilized.  We would get another update on Day 3.  Day 3 we had fantastic news, all 6 embryos were growing as expected.  I think for both of us, this was when we finally started to believe that this might actually work.  We might be the lucky ones.  Day 5 was the day of the transfer.  Fun fact, did you know that embryo’s hatch? They do.  They do all these amazing things before you even know you are pregnant. 

 Transfer day was the worst day of the whole entire process.  You have to go to the office with a full bladder.  You have to hold your bladder until the transfer.  I can honestly say, I have never ever ever had to pee so badly in my entire life.  If you have ever had to pee really bad, hold it for another hour, and then you would know how awful it is.  We are supposed to talk to the embryologist prior to the transfer of the embryos.  I consider myself a pretty strong person.  I nearly broke down in the doctor’s office when they told us the latest news.  Of the 6 embryos, 4 stopped growing, 2 were still growing, but much slower than the stage they should have been at that point.  The embryologist was very honest with us, the outlook wasn’t good.  He suggested transferring 2.  I don’t know how normal non emotionally shunted people do it.    He said they would continue monitoring the remaining 4 to see if they decided to grow.  We agreed and they transferred 2 embryos.  The transfer was weird.  Here this room full of people are looking at you like they just witnessed the miracle of life, yet we had just been handed such horrible news.  Tom and I just looked at each other, we tried to laugh it off, but we both knew this wasn’t going to work.  We decided that we were going to keep it a secret that two were transferred.  Neither of us felt like hearing comments about twins when we were just told that we likely would have none.  The next day we got word that the remaining 4 didn’t make it.  Then we waited for two weeks for official news. 

I just knew it didn’t work.  I didn’t really need a test to prove it.  Of course I had hoped I was wrong, but I knew I wasn’t wrong.  I knew this didn’t work.  When we got the official news that the pregnancy test was negative, it hit Tom harder than it hit me.  During the two week wait, I immediately started looking into what our next options were.  I knew if this didnt work, that this IVF round would have ended up a complete failure. No frozen embryos, no do overs.   Sometimes when you hear something that you don’t want to hear, you feel like a loser.  Your emotions take over and you make these decisions based off of fear rather than what makes sense.  I think it was important for us to discuss the next step before we knew the official outcome.  Before our emotions were all tied up.    It was during this period that we discussed embryo adoption.  I remember one night, I just looked at Tom and said, I have to tell you, I feel like we are struggling to have a biological child, and I don’t really care about having a biological child.  It’s really not that important to me.  Without hesitation, he said me either.  We are struggling to make an embryo and we could just adopt an embryo.  I have a better feeling about this process than I ever did about IVF.  In hindsight, I never actually had a warm/ hopeful feeling about it.  There was a period of about 3 days during that process where I was like “Crap, this stuff might actually work.”  That was those few days where everything was growing in a dish nicely.  I don’t want any comments like… well if you were more positive, the IVF would have worked.  During IVF, I don’t think I have ever been calmer.  I did every single thing I could possibly do to increase my odds.  I did acupuncture.  I was relaxed, and besides the crappy outcome, I felt really good while going through the process. 

Say What?!?


So, a little over a year ago I started having issues that required me to go visit the good old ob/gyn.  They asked me if I was on birth control, I said no.  They then asked how long I have been off, I told them over a year and a half, but we hadn’t really been trying until about six months ago.  I was all smiles, but they gave me a look of shock and horror.  I should have known then that something was wrong.  They started doing tests which included an ultrasound with an eight inch probe. You lay there on the table as a relationship between you and the ultrasound tech develops into something magical.  As uncomfortable as this is for you to read, I can assure you that it was much more uncomfortable for me to experience.  Weeks later, as I was still having issues, I went back to the doctor.  It was at this appointment that I was told that I have a deformed uterus, a heart shaped uterus to be exact.  A deformed WHAT?!? In the game of life, I really don’t recall a deformed uterus being an option.  She then tells me that this can lead to miscarriages, infertility, late term miscarriages, and a long laundry list of other issues.  I instantly did what any other person would have done, I began googling.    It wasn’t sounding pretty.  She then referred to me to a fertility doctor for additional testing. 

I tried to make an appointment to the doctor that they recommended.  They didn’t accept our insurance.  So I call the doctor back, they couldn’t find another doctor who could perform these tests and advised me to call my insurance.  I call the insurance; they can’t search by tests, only by doctors in network or out of network.  The girl gives me a long list of doctor’s offices to call; none of them perform these tests.  A few days later, coincidentally, Tom gets a call from his HR representative. Turns out he has been in the wrong insurance since he started working there, for almost two years.  They switched him into the correct insurance and as luck would have it, this insurance was covered by the fertility specialist. 

So I make my appointments and I go along my way.  The first test was one that is guided by an x-ray.  So you have to go over to the hospital to have that one done.  As you lay on the x-ray table a woman attaches a catheter to your cervix.  Now keep in mind, you are spread eagle in an x-ray room at a hospital with a pillow under your crotch (there’s an important life lesson to be learned here).  The woman calls in the radiologist, a young guy about my age, now this isn’t awkward at all. She then shoots a dye into your uterus and they take an x-ray.  You hop off the table go get changed then she discusses the results with you after.  Oh yea, all that dye, its dripping everywhere, including the pillow.  So next time you go to the hospital remember, bring your own pillow.  You really don’t know where that thing has been before you. 

Finally, the woman went over the results with me, as I’m looking at the x-ray of my uterus.  At this point, I done enough googling to know it isn’t supposed to look like The Jokers smile.  I sat there while she told me that this is more severe than they typically see and I would need surgery. 

The next procedure I had was an ultrasound where they hook your cervix up to a catheter and fill your uterus with saline so they can see the inside of your uterus with the ultrasound.  This was a very exciting day for the staff of the doctor’s office.  They immediately saw polyps.  They appeared to be very happy about this.  One of the 4 people in the room exclaimed “We don’t normally see anything!”  Well imagine my delight, I went from having just a deformed uterus to now having polyps too.  More googling revealed polyps are tumors.  Great does this mean I have cancer?  I prefer to not have any tumors anywhere.  Awesome.

During this time I was required to do a lot of blood tests.  At one appointment the doctor informs me that I have high prolactin.  I needed to do another blood test to confirm the results because this is indicative of a tumor on your pituitary gland.  Are these people for real? Now I have a deformed uterus, polyps, and maybe a tumor in my head.  Awesome.  I was lucky enough to not have a pituitary tumor.  We then found out my husband had issues that’s his story and that’s all I’m going to say about that.  Things started to get worse for me also.  I started to get this pain that felt like organs were being wringed out.  It was so painful, it would make you stop in your tracks and you just didn’t want to move or breathe or anything.  The doctor suspected endometriosis. 

So I scheduled my surgery for ASAP, because I don’t want any tumor in me longer than it has to be.  I essentially had two surgeries at once, one vaginally and the other laparoscopic.  They removed the polyps and fixed my deformed uterus vaginally.  Then the laparoscopic surgery was to explore and check for endometriosis.    The doctor told me I would be walking around the next day.  I had visions of me on the treadmill.  I didn’t realize walking the next day was more like walking like a 97 year old lady holding the walls to stay upright while I walk to the bathroom.  I also had an allergy to Percocet.  My face swelled up and I hallucinated that a Mexican man was in my bedroom.  I could also see a forest in my bedroom.  Cool.

At my post-op appointment the doctor informed me that I didn’t just have a polyp, but I had a uterus filled with polyps.  So for all of you kind hearted people who want to tell me you had a polyp too, and still had children, so I shouldn’t worry at all…  Zip it.  This isn’t a contest of who has the worst uterus. She said it was one of the worst cases she had ever seen and that I would have never have been able carry a child without the surgery.   She told me she fixed my deformed uterus.  Good news, I don’t have cancer.  I also have endometriosis.  Then she dropped the hammer, due to my husband’s issues, if we wanted to have children, we would need to go ahead with IVF within 6 months because polyps grow back rather quickly.  This was September.  She also asked me if I wanted to talk to the girl about the financials of IVF.  I told her yes, because I didn’t want to have to come back to the office.  Honestly, as soon as she told me I needed IVF, everything else sounded like the Charlie Brown teacher.  I was kind of prepared for her to tell me that IVF would cost 10K total.  I was not prepared for her to tell me that IVF would cost 17k and that medications would cost an additional 7k.  How were we going to come up with this kind of money in less than 6 months’ time?  I had done my research on IVF.  I knew what this meant.  I knew it meant that Tom and I would have to pay a lot of money to have a 50/50 shot of having a child.  I know we all have seen John and Kate plus 8 and think ooooh IVF…. Everyone walks away with a child.  This is not the case.  Only 50% of people walk away pregnant during an IVF cycle, not great odds.  That means I walk away with a baby, you don’t.  You walk away with a baby, I don’t.  I just remember losing my shit as soon as I lft the office. 

 Every day from that point forward was spent talking to our mortgage company, talking to the insurance company, talking to the doctor’s office, trying to think of every possible thing that we could do to reduce our costs.  Open enrollment at work was during October.  All of these decisions needed to be made immediately.  I tried to see if I could get switched into different insurance to see if it would be covered.  It wouldn’t.  I could go on and on.  I thought of every single thing that I could do to get this covered.  I even tried to get a part time job at a bank because I knew that their insurance covered it.  The part time job was filled before I could get my application in.  The only option we had available to us was to drop the maximum amount into our FSA.  In doing this, we were locking this money up.  If by some stroke of luck we ended up pregnant naturally, we would lose 7k in a FSA.  That’s a lot of money to lock up, money that we use to pay our mortgage, bills, etc.    So this wasn’t an easy decision.  I think this was the most horrible point in my entire life.  There was this weighing on us, and then every single day there was one disaster after another.  I believe our dogs rewarded us to a pile of vomit or crap every day during that time.  It is a miracle that I didn’t end up with a mug shot during that period.  I was getting migraines every single day.  My husband was having surgery. People with their happy lives want to offer you advice, and everyone knows someone that had a miracle occur.  That’s awesome and I personally couldn’t be happier for these other people, however I don’t think it’s a good life plan to essentially walk around hoping to win the lottery.  Statistically, it isn’t likely to happen, that doesn’t mean that it couldn’t it just means that it is very unlikely. 



The opposite of Fertile


As we pass the one year mark on "the year of hell", it is becoming apparent that going forward our new normal is SO VERY FAR FROM NORMAL. The old me, prior to experiencing all of this, would have told the new me to shut the hell up, no one wants to hear about this crap. The new me now realizes that it is impossible to move forward with family and friends, without explaining how we got here. I'm sure all of you know bits and pieces. We've gone through one thing after another. Some are harder than others to talk about. Honestly, what we've gone through is hard to talk about to one person, so to have to talk about it over and over and over to every single person is difficult. Some people hear some news, some people hear other stories and after a year of things going from bad to worse, it's hard to tell who knows what.


We are starting to have to make more difficult decisions, and as an outsider not understanding what has been going on, I would look at this situation and say WTF?! They are doing what?! Why would they do this? I know, I’m not supposed to care what other people think, and to some extent, I don’t. During all of this, we've tried to make the best possible decisions based on what has been thrown at us. At this point, I think it's fair to say, we've been in a shit storm for a while. I feel like people from the outside, might see us having a rough time, not understanding what's going on behind closed doors.  You can’t help but feel like some people think you are being dramatic, or unnecessarily making this situation seem worse.  We aren’t. We've tried to put a smile on our face, put one foot in front of the other, but it hasn’t been easy.

 For the past year, infertility has totally consumed our life. Yet, it's not exactly something I like to talk about. For those of you that know me know, when I break, I break. It isn’t pretty. I can write how I feel, but for some reason, talking about it, makes me freak out. You know those nasty cries that resemble hyperventilation. So I try to avoid that at all costs. So the answer to the "how are you's?" is usually "great, things are just great, couldn’t be better" because I don’t believe that people want to hear about this, and honestly, I would like to continue going through life pretending that this isn’t happening to us. At this point, there is no denying it, this is really happening to us.  So, I’m going to try my best to chronicle how we got here.  I don’t want to be this coward, embarrassed to talk about this anymore.  There are a lot of people going through this.  We are reproductively challenged, there I said it.

Now, before I get into this, I need to put this out there… We stopped using birth control two years ago.  So if one more person tells me, just give it time, just have fun, etc, you may actually meet my fist as it hits your face.  Year one, I don’t think either of us really cared that things weren’t happening.  Year two involved actively trying, and here we are today so I think it’s safe to say we have a legitimate problem. 

Many people don’t know this, because we really didn’t share this with the world, but a while ago, I had a miscarriage.  Miscarriage is such a pretty word.  Miscarriage really doesn’t begin to describe the carnage that actually occurs.  Miscarriage as you enter the third month of pregnancy is truly horrific.  I can tell you that after this occurred; I had zero interest in ever trying that ever again, anytime, in my immediate future.  Now, the fact that we got pregnant, the first time we ever stopped using birth control, led me to believe that when we actually did decide to try again, that we wouldn’t have a problem.  I think this has been the hardest part of all of this to process.  How did we get from there to here?  We’ve asked the doctor, she just looks at us compassionately, as she tells us that she wishes that she knew why things like this happen.  There are no answers, but that obviously during these few short years, things have deteriorated quicker than they should have.  It happens, but I'm getting ahead of myself.

So the next few posts will involve catching up to where we are today.  Please bear with me as I attempt to put into words what we have been dealing with.  I'm hoping that after we are all caught up, that this page can serve as an update to family members so that we can just tell this story once through this blog, as opposed to 90,000 times verbally, which usually involves tears. We want so badly to get our life back, get back to where this topic wasnt consuming every single thought.  We appreciate the support of family and friends more than you could ever know.