Eggcellent Insurance: A Follow-Up

Many of you knew I froze two rounds of eggs ~4.5 years ago.  A lot has happened since then.  First, a few parts not directly related to those eggs:

• I met Danny in late July 2018
• We got married in May (and September!) 2020
• I refused to consider trying to get pregnant until about two weeks before our September wedding...that damn dress had to fit
• I turned 40...during covid...on Valentines...during an epic winter storm in which everyone was stuck at home for over a week
• We had two failed IUIs and one failed medicated cycle - the first IUI being on the first snow day in January.  I was certain that was good luck as we slid out of our driveway to get to the dr office. 

Now, about those eggs:

While we were off snow skiing in March, my first batch of eggs was fertilized.  If you recall, I froze two rounds - the first was 16 eggs and the second was 19 eggs.  Initially, it sounded a bit overkill to even fertilize the whole first batch, but I felt like it was the way to go.  Danny kept saying "we're going to have 16 kids!"  In my dream world, we would have never needed to use those eggs.  In my next dream world, that first batch would have given us at least ~4-6 embryos and all the kids we would want.  I would donate my second batch of eggs to a dear friend who is a cancer survivor. In all honestly, it felt a bit premature even to be fertilizing the eggs. Like we had not tried long enough otherwise.  However, we would quickly learn dreams die hard in the fertility world of Kathleen and Danny and we could not have started soon enough.

When eggs are fertilized, you get a call on days 5, 6, and 7 from the embryologist to let you know if any have turned into a "blast" (blastocyst) or an embryo.  We got our first call on the way to the airport to fly home from our ski trip.  Day 5.  Nothing had gotten to blast yet, but we had 13 still growing.  I thought that a bit weird, but was still hopeful.  I received the day 6 call right at noon as I pulled into the gym parking lot.  Day 6 had nothing to blast yet, and maybe two at best still growing.  I turned around and drove home.  On day 7 I got the call in the middle of my workout, and somehow, while the news that day was awful, it was almost expected.  Zero blasts/embryos.  We did not even have any embryos to biopsy for PGS testing (we are testing all embryos for genetic viability).  Danny was out of town so I had to begin to process that news alone.  It was my sister's birthday.  I could not talk to her, or anyone else in my family.  They were going to have questions to which I had no answers.  That evening, I found myself screaming the most visceral scream that has ever come out of my body as I piled on the heap of sheets I was trying to put on our bed.  I wondered how in the world my 40 year-old body would ever make a baby when my 35 year-old eggs could not figure it out in the most sophisticated of settings.  This, fortunately, so far, has been my rock bottom.  The next day I spoke with an embryologist who told me she did not think our other 19 eggs would give us the two kids we are hoping for, and that I would likely have to start over with IVF to get embryos.  She also told me that at my age, any embryo has a 10% chance of being genetically viable.  Yea.

Here is a little summary of what has to happen to actually get a baby:

    

It took a few days to get over the shock of our plan going in such a different direction than we expected, but we did not want to waste time getting on with it.  A "fresh" IVF cycle was planned for April - i.e. starting over with getting new eggs.  Due to costs, it was decided we would not fertilize my second batch of frozen eggs until we had a fresh batch to fertilize at the same time.  I did not like going into a full new cycle without knowing the results from my 2nd round, but I do not like a lot of this.  Danny was able to get his first covid vaccine in early March and I was able to snag a J&J vaccine on March 20.  That was such a relief - I did not want to risk getting a cycle canceled after spending thousands on meds and then testing positive or getting exposed.  Seven days after my vaccine, I realized what I was having were likely NOT side effects.  I got tested (Danny made fun of me), and sure enough, I was positive.  Danny got tested and was positive as well.  Leave it to us to get covid in about the last two weeks we could possibly get it.  I had one day, then, to decide if we were going to go forward with IVF in April, or take a month to recover from covid.  As hard as it was, I knew waiting was the right answer.

During that lovely month of April, I found out my division at work was being acquired.  I was the only person from the finance department going to the new company.  It makes sense as I was the only finance person solely dedicated to that business unit, but it was still really, really devastating.  The benefits at my current company were great - one of the big reasons I stayed so long.  Most important at this point was the fertility benefit.  That was in total jeopardy and it took a long time to find out anything about the new company.  Once I did start hearing things, nothing was good.  I kept saying "I'm just waiting for the good news."  

Round 2 Fertilization and 3 Retrieval

We started round 3 (counting my two egg-freezing rounds as 1 and 2) in early May.  The stim days were relatively uneventful and honestly a bit hard to remember by this point.  My work situation was more and more stressful as I realized what all I was going to be losing in the deal.  I had nothing to gain which was really sad.  Minimizing stress is one of the key goals during IVF and I was far from that.  We had our egg retrieval on Tuesday, May 25.  I do not love that day because a dear friend's mother passed away on that day in 2003.  The protocol we used this time included a dual trigger - lupron and a "little bit" of HCG.  The HCG hit me like a truck.  I woke up from surgery sick and could not stop throwing up.  Poor Danny was digging in my purse for a hair band but could not figure out how to get my hair up (I braided it for future retrievals so he did not have to figure it out again).  I had about everyone in the surgery center just looking at me and shaking their head because they could not give me any more meds to stop my throwing up.  That was fun.  Our anniversary was two days later and I did not get out of bed until five that day.  Danny had decorated the whole living room in pink paper with places we had been - it was really sweet, and all we did to "celebrate."  We went to the lakehouse the next day and four hours in the car was a mistake.  I spent Memorial Day weekend at the lake, but did not get off the couch.  I had overstimulation issues similar to my first round of egg freezing.  It was a week before I ate a full meal and close to two weeks before I ate three meals in a day.  I felt amazing for one day and that night I had to go back on birth control to get ready for the next cycle, and sure enough I woke up feeling awful again.  My gag reflex had even been affected - swallowing my 20+ pills a day was really, really difficult.

We went through the day 5, 6, and 7 calls and did not have overwhelming good news.  We did, at least, get two embryos to test from the frozen round.  Ultimately, we found out one of those embryos was genetically viable.  Our first embryo!  However, note these numbers are far from normal.  We have a decent fertilization rate.  Most people would have made far more embryos than we are/were able to.  We have been on the wrong side of the statistics at most points.

Round 4

We moved into round four as quick as we could, trying to beat a possible "deadline" of losing my fertility benefit from work.  Let me tell you how fun that is.  Mid June, I made the decision to not go forward with my offer from the new company.  I did not have a home at the old company either, so that meant I would be unemployed for the first time in 17 years.  But it also meant I could go on COBRA and keep my fertility benefits.  I am a little bitter that I had to even end up in this place and make this decision, but I am thankful it was an option.

The day I declined my offer letter was the first time I feel asleep in acupuncture, and the first time the acupuncturist said my pulse felt good (i.e. low stress).  That was all signs of good things to come.  Our next retrieval was July 6, four days after my last day of work.  Our number retrieved felt low at first, but overall we had our best result yet.  We did a lupron-only trigger this time and I was vacuuming by the morning after surgery...and there was no puke!

The genetic testing results came very quick after round 3, but seemed to take forever for round 4.  I kept imagining getting the call, and kept imagining my reaction to being told both were good (I was going to be in the gym and was going to completely lose my mind and be a crying, snotty, happy mess with everyone wondering what in the world was going on).  I finally called the clinic the Friday before we left for Costa Rica to see if they had the results.  Turns out they may have forgotten to call me.  I did imagine a good bit of the reaction correctly, except Danny was with me and we were in his office when we found out the news.  The embryologist said "I have good news" and I melted.  When she said they were both good, months of tears and snot came out.  I am not sure I had cried about any of this since March 17.

Round 5

While we were now up to three embryos, I knew we were heading into at least one more retrieval.  There is no set number of embryos needed for 2+ kids, but it feels like we need more than three.  We are "embryo banking" due to my age.  If we transfer an embryo now and do have the Hail Mary occurrence of getting pregnant, then it will be 1.5-2 years from now before we would begin to think about trying again.  By then, I'd be over 42 and my chances of making any embryos would be significantly lower than they are now...and remember they already blow.  I have had four in my head from the very beginning as the lowest number of embryos I would feel comfortable with.  Lately, I have seen a few doctors recommend three per live birth - so we would need at least six.  That may be truly impossible for us.

We took a full "natural" month between rounds 4 and 5 to give my body a break. By that, I mean I had a full cycle without birth control.  Of course, this natural cycle decided to be late.  I'm never late.  This was late enough for me to come up with a reason to go to the grocery store while I was visiting Kelly in Washington to secretly buy a pregnancy test.  Spoiler Alert: I was not pregnant.  Just waiting daily for my period to come so I could finally get the next round started.  The passing of time can be one of the cruelest parts of this journey.  It either does not move fast enough, or moves way too fast while you are on the sideline waiting for something you have zero control over to happen.

This round started in late August and went off with a bang.  For round 4, we added the drug Omnitrope - or human growth hormone.  It is known to help with egg quality and seemed to help us.  For round 5, we also added dexamethasone, a steroid.  This is also supposed to help with quality.  By the end of the cycle, I was on four injectable drugs a day (two hormones to stimulate ovarian growth to make lots of eggs, one drug added mid-cycle to prevent ovulation, and the Omnitrope), and then took the steroids orally at night.  This is in addition to the countless vitamins and supplements I take daily.  Back to the bang - to monitor the progress of cycle, your estradiol (blood estrogen level, essentially) is checked via blood draw, and the size of your follicles are measured via ultrasound.  Generally, each follicle will have one egg.  So the bang this time was my estradiol level.  At my first monitoring appointment, it was three times what it had ever been before at that point in the cycle.  It continued on this trend and I grew very wary of potential overstimulation on the back end.  High estrogen can contribute to a miserable recovery.  My previous cycles had all topped out between 2,000 and 4,000 - 4,000 being the very first one, and the rest being under 3,000.  This time I was over 5,000.  My ultrasound was also showing a higher number of follicles than in the past.  I was cautiously, or not-so-cautiously optimistic.

This retrieval was on Monday, September 13.  This is the anniversary of the death of my cousin's infant baby boy.  It is also Danny's parents' anniversary.  I tried to not let the date get to me and told myself it could be a great story to share with my cousin that something great happened on that day - and tried to focus more on the "good" of a wedding anniversary than anything else.  I woke up the morning of retrieval in more pain than any of the previous cycles.  I was barely able to walk.  It is not really a surprise, because they ended up getting 27 eggs.  I was in total shock and relieved.  I felt for sure this was going to be it and that we could be talking about having a transfer in October.  I could actually, possibly, maybe be pregnant by Halloween.  It took two rounds of fentanyl to get my post-op pain under control, but after that I was good to go.  Rounds 4 and 5 both afforded me an easy recovery which I'm so thankful for.

We took off on a two week road trip the day after that surgery.  We got our Day 5 call on Saturday while walking in downtown Nashville.  They told us they we had one embryo, but seven were potentially still growing.  My expectations immediately shifted and I did not feel good about any of it.  Danny was still optimistic, but I just was not feeling it. Day 6 call gave us one more embryo, but four were still growing.  The day 7 call was just more bad news, that we are getting used to.  None of the remaining four made it.  So, out of 27 eggs, we at most had two embryos.  Statistically speaking, at least 50% of embryos are not genetically viable (hence high miscarriage rates).  After three days of not great embryo news, the next day I found out I did not get a job that I had been really excited about.  Four days of bad news in a row.  Yea.  We went on the trip to try to live a bit, but could not outrun the bad news.

The genetic results came quickly as well - we were still on the trip when I got a call from the lab.  I was not expecting it to be results yet, so I was caught a bit off guard.  We found out neither embryo was viable.  We were on our way to Chattanooga that day.  We got to the hotel and I said I just wanted to sleep - my way of grieving.  Friends was on the TV and it was making Danny laugh his head off.  Hearing him made me happy.  We went to dinner and I stuffed my face with a fried brownie...basically a brownie stuffed inside a funnel cake or donut, and covered in ice cream.  That did a good bit for the soul.  

By the next day, I had picked up my bootstraps and was plotting our next course of action.  We had talked to one of the nurses that basically said we had three options.  I already knew we had those three options, but was hoping they would give us a bit of guidance, but it was basically left up to us.  Our options were:

1. Proceed with our first transfer, knowing we had fewer embryos than we wanted, and see what happened

2. Do a mock transfer cycle, called an ERA, where you pretend you are going to transfer, but do a biopsy of the uterine lining instead to give a better view into "getting it right" when we do transfer

3. Do another retrieval

I had pretty much decided we would do the ERA/mock cycle.  Some people do not do that until they have had two unsuccessful transfers, but those are people who have more embryos to spare.  Then, on a Sunday morning, in the middle of nowhere Louisiana, Dr. Vaughn called us.  I was surprised the office was calling, and even more surprised it was him.  I am so, so thankful for that call.  We both got to talk to him about our options and left with a plan to do another retrieval, and then to do a mock cycle for sure the month before we transfer, whenever that may be.  Danny felt way better after being able to be a part of that conversation as well, and I had so much more hope (funny how all I need at times is a plan...).

Here is a summary of where we are heading out of round 5. Note these numbers are fairly terrible - and incredibly frustrating when neither of us have a diagnosis.  "Unexplained infertility" is likely the top diagnosis in fertility.  We have both had extensive testing and nothing has come up.  I make a great amount of eggs for my age - they just may be crappy eggs.  The only way to know is to mix my eggs with "proven" sperm and to mix Danny's sperm with "proven" eggs.  Way easier said than done, and not something we are very interested in doing at this point.  Let that 91 number sink in.  If we tried for 91 months, we would have had three possible opportunities to get pregnant.  That's for all those people who have suggested I "just relax."

Round 6

I told Danny at some point that I have never been physically fast at anything.  I would like to think I am there mentally, but speed has never been the name of my physical game.  Slow and steady, calculated, planned, and measured is what brought me success in my endurance sport days. I told him "well, I've done six ironmans, why not do six rounds of IVF?"  He did not have much of a response to this, other than that he is stuck with me.

To add some nice insult to injury though, for the first time ever, my ovaries would not shrink back to their normal size after round five.  I went in for my baseline appointment to start the next round and was told to come back in 10 days and try again.  Then again.  The waiting is truly one of, if not the worst part of this.  I finally got the green light on October 18 to get going.  I started the stim drugs on October 22 and am looking at a retrieval this weekend.  My estrogen started off more normal this time which felt like a bit of a relief (based on what? God only knows).  But, as of Tuesday, it is looking like my follicle/egg count and estrogen could be off my charts again.  We are not excited about high numbers this time.  It is a 100% crap shoot/total mind fuck.  There has been no rhyme or reason for our good results vs our bad results.  So we will just head into this retrieval and subsequent day 5-7 calls with low expectations.  We know not to get excited this time.  If we are able to even get 1-2 more normal embryos, I think we will feel confident moving to that fifth hurdle.  To be honest, I am scared to death of that though.  I have no idea how my body will handle a transfer.  Is it equipped to take it and go and we never look back?  Or will be facing loss after loss?  I have often told myself "I won't know if I don't try" - generally in relation to something athletic.  But here I am/we are - trying with all of my/our might.

Do I regret freezing my eggs? Absolutely not.  Do I recommend others consider it, even knowing it did not have a desired outcome for me?  Yes.  I will not be left with any question that we/I did everything we could do to have biological children.  I was able to enjoy my late 30s and the beginning of my relationship with Danny knowing I had done everything I could.  Do I wish maybe 30 year-old Kathleen had done this instead of 35 year-old Kathleen?  Maybe.  But I certainly do not dwell on that. Thirty year-old Kathleen also could not have begun to afford it, so it is really a moot point. Having the existing relationship with my fertility doctor was another huge plus to having frozen my eggs.  We had a fast track to where we are now - which feels quite ironic to say considering what a journey it has already been and will continue to be.

This post is just beginning to scrape the surface of what the last ten months have been like.  I could write a book on the roller coaster ride neither of us signed up for.  I hope to share more, but we will see where that goes.  Getting it out in the world is cathartic for me, and I hope sharing my story can possibly help others.  I have no shame in the fact that we are seeking treatment.  I wish there was not such a stigma around it and that insurance coverage was more widely available.  I talk openly about it when appropriate (or not) with hopes that one day it will be normalized.