As I sit down to write this, I'm shocked to see February 27, 2022 was the last post I've written about our IVF journey. In some ways, it seems like so much has happened over the last year, and on the other hand it seems like nothing has happened at all because we are back to square one.
I'll provide a quick summary of the last year, but please understand this won't even begin to describe the true roller coaster ride we have been on. I actually don't think it is even appropriate to call it a roller coaster because that indicates there are some ups. Our ride has been more like a train ride through hell.
After our failed transfer in February, we decided to take a break in March to let my body rest a bit before transferring our next embryo. During that time, a friend reached out and told me about her friend that hadn't had success here but did at CCRM in Colorado. At the time it almost felt like a divine intervention, but I now know better. We spent seven months and $15-20k on the CCRM leg of our train ride through hell and had nothing to show for it. Many have had success there, but our experience was not great. Their covid policy was so strict that I was more stressed out about their PCR test than the entire IVF cycle. We had to drive to/from Colorado instead of fly because we could not risk getting covid. I had to quarantine for a month before the cycle not once, but twice. My first retrieval was on July 4 and the week leading up to it was a total shit show because my nurse was out with covid (how ironic) and my doctor was out of town. I was a hot potato tossed around from nurse to nurse and I had to straight up dictate my care. Not what you would expect from the top IVF clinic in the nation. That round got us three embryos, but they turned out to all be abnormal. Our second round was in September. We found out they lifted their covid restrictions just before I left which was a huge relief - but too late to change our plans and just fly out there. My parents drove with me out there and Danny flew up later because he had school (he started the Executive MBA program at UT in August). That round we didn't even make any embryos to genetically test. Cool.
We went back to our Austin clinic after that to work on transferring our last two embryos. The November transfer failed. We found out the day before Thanksgiving. That was a lovely holiday. The December transfer resulted in a chemical pregnancy. We were supposed to get the call on Friday, December 30. We ended up going out on Lake Austin with one of Danny's friends. I was hesitant to go, knowing we were waiting on that call, but pepped myself up and told myself that it was a good thing. We would be right at the same area on the lake where Danny proposed over four years earlier when we got the call. I half figured I'd be going for a swim in that December water if the call happened to yield good news. Well, the call didn't come when we were on the lake. It came as we were putting the boat up and I just let it go to voicemail. We listened to it in the car on the way home and were surprised to hear that they did not have results yet (at 4:30pm) because of the holidays. Joy. I finally sucked up the nerves to just test at home and it was negative. I didn't even cry this time. I just said "let's go eat." As soon as we sat down at Lupe's (and just before I was going to order my first alcoholic beverage in weeks), they called back. The nurse said my HCG was a 7. Under 5 is negative, over 5 is technically positive, although my level should have been over 50 at that point. I had just listened to a podcast where a RE said she has had ONE patient go on to have a live birth after having a HCG level of 7. I was hoping for a nice clear break heading into the new year - either I'd not be pregnant and I could work on healing my body, or I'd be pregnant and we would have something to celebrate. Instead, I entered "beta hell" - where you watch your HCG levels across several days to see if it is increasing or decreasing. I had to stay on my meds (two intramuscular injections on odd days and one on even days) until I tested again the next Monday. That day my HCG was an 8. Whohoo. That number needed to be in the 30-40s by that point to have any hope. Thankfully they let me end my meds then and it was over. That was my last embryo. We had been unable to make any more. That was my last chance at genetic children.
I knew donor eggs was our next step, but had been beyond overwhelmed at the thought. Not because it meant the child would not be genetically related to me, but because of the huge mountain it felt like we had to climb to get there. The donor market is an unregulated for-profit industry that makes me sick. Literally I was physically stressed each time I thought about having to navigate it. Thankfully I took it on the way you'd eat an elephant...or do an ironman...one bite or step at a time...and it does not feel quite so bad anymore.
Danny and I began the process by meeting with a counselor (required by most clinics for third-party reproduction). When I first started telling Danny what I knew about using donor eggs, I realized I had been preparing for this possibility for over a year while he was pretty much in the dark about all of it. I was pretty adamant from day one that I had two stipulations: 1) I wanted a fresh cycle - where we match with a donor and we have a fresh fertilization of all eggs from that cycle and 2) that we had a known ID situation. I suppose I had a few additional stipulations, but they were kind of built into the regular donor selection process (I wanted young...but most programs won't take donors over 28 or 30, and I wanted educated, or on the way to being so). The alternate to a fresh cycle is to buy frozen eggs from an egg bank. They are generally sold in lots of 6-8. A lot is generally in the ballpark of $18k. The fees from my clinic to use those eggs for a transfer to me are in the ballpark of $18k. If you know anything about IVF thus far, you would know that 6-8 eggs is not a lot. You'd be lucky to get 1-2 genetically normal embryos from that. Chances of having one kid, not to mention two, from that are pretty low. Keep in mind we are 100% cash pay at this point. A fresh cycle at my clinic in Texas costs $35-40k and would generally yield 20-25 eggs. Do the math there. I feel like the frozen banks are just preying on desperate intended parents and advertise as the lower-cost option when in fact they are not always that. The second piece, known ID, or some form of that, means that the donor-conceived child has the option to reach out to the donor at age 18. A majority of egg (and sperm) donation in the US is still 100% anonymous and this infuriates me to no end. This market is out to protect the donors, not the children. Who am I to make the decision for my future child that they will never get to know/meet their donor? Closed adoption is a thing of the past, so I don't understand why we are still here with donor eggs and sperm. This is the part Danny wasn't sure of and it was actually his idea to meet with a counselor before we went any further - to better understand the implications of anonymity, etc. I was happy to oblige and think it is great we have a relationship established with a fertility counselor now.
Many will say "well with 23andMe and other DNA testing sites these days, no one is truly anonymous anymore." I would agree, however I would hate for my child to find their donor online and then the donor say they want absolutely nothing to do with the child, and that they had no intention of ever being found. My clinic in Austin, Texas Fertility Clinic, has a good in-house donor program. I have heard the donor pool isn't that large, but it would be very convenient as it is my home clinic. Unfortunately, they were out from day one as they are 100% anonymous. I spoke to the donor coordinator to ask if they would at least ask a donor if they were open - if we agreed to pay for a separate legal agreement - and I was told again "we are 100% anonymous." So, the next several weeks were spent researching clinics that would meet my two criteria. Facebook groups actually provided the best information. We ended up finding a clinic in Utah that has great reviews.
I told myself from early January that this could take a while...to prepare for at least four to six months of sitting idle...while growing older by the day. We had initial contact with UFC (Utah Fertility Center) in mid January. We got access to the donor database immediately, but could not reserve a donor until we had a consult. That wasn't scheduled until February 27. Nothing happens quickly when time is literally slipping through your hands. Thankfully, they had a cancellation and we got to move up to February 6. By that time, we had narrowed the pool down to two donors. The database has ~220 donors in it. We first narrowed it down to ~10 donors and requested additional info on each. The info we see in the database does not include whether or not the donor is open to contact, so the clinic had to provide that separately. Out of the 10 we chose, only two were open to contact. That narrowed things down very quickly. Donor 1 is a redhead that looks like she could be our daughter...she looks very much like my oldest niece (more on that one later). Donor 2 showed up in the database a bit later and is blonde, brown eyed, and runs marathons. I was instantly all for her. She was also adopted which made me more drawn to her for whatever reason. To be fair, she looked nothing like me, but sounded great. Donor 1 had done one previous retrieval of 23 eggs that went to a bank. Donor 2 had done three previous cycles. Cycle 1 and 3 made 8-9 normal embryos each which is amazing. Cycle 2, though, was only 7 eggs and only 1 normal embryo. Note each of those cycles cost the intended parents the same. Such a f'n crapshoot. The doctor told me Donor 2 sounded like a slam dunk and that they would research her 2nd cycle for me. During that research time, we found out she had two more cycles signed up - in March and April. So, we could have May. The limit for # of cycles there is six domestic and four international, and only three at a time without a several month break. So, we would be number six if we went with her. The advantage was that we could see how the March and April cycles went and if they had poor outcomes, we could change donors (and be back at square one with regard to timing). The risk was that she could decide at any point between now and then that she doesn't want to do it anymore, or wants to take a break, and we are SOL. That put us back on Donor 1, but then we found out the only info they could get from the bank on her 23 eggs is that they had so far resulted in three failed transfers. We have no idea how many embryos total they made; we have no idea if it is one family or three; we have no idea if the embryos were tested before transfer; we have no idea what the sperm quality was that fertilized those eggs; we have no idea if the intended mother(s) had uterine issues; and the list goes on and on. Danny told me he did not feel good about her anymore and I said "welcome to this process...did you think it was going to be easy?" We did find out Donor 1 did not have any cycles planned so we would be first in line with her. We were leaning towards her, but had not decided for sure. On my birthday, my niece Molly (whom Donor 1 looks like) brought me lunch and I went to show her the two options. Only, I couldn't find Donor 2. Her last cycle had been reserved and we lost out on reserving her. So, while at dinner for my birthday/Valentines, Danny and I decided to go with Donor 1 and sent in our request. We found out the next day that she is available to cycle in April. Once again, we just wait...and hope she does, in fact, cycle in April and hope that she makes tons of great eggs that make tons of great embryos for us.
I had hoped this period of waiting would be good for me emotionally and physically. I have gained over 30 lbs in the last two years - 10 of those pounds coming in just the last two months of treatment. I was hoping coming off the steroids and hormones would help me shed some weight and start to feel a bit more normal. Well, here I am over six weeks post any drugs, and I have not lost a pound...if anything I have continued to gain. My face is at least not twice its normal size anymore (steroids do that), but overall, I am still so uncomfortable. I have no clothes that fit. The clothes I have bought over the past year to be "fat clothes" no longer fit. I'm trying to run, but it is hard. I'm running 3-4 days a week and in the gym 3 days a week most weeks. The good news there is even though running is hard, I still do it. I am very thankful for my Gazelles running group - for a place to show up three days a week to not run alone. And the cool thing about the gym is even though I'm bigger than I have ever been, I can still lift quite a bit of weight - possibly more than ever before. I had to be careful to not get carried away on the steroids. Speaking of those stupid steroids, I broke out in full body hives after coming off them cold turkey after my failed November transfer, so I tapered after the December failure. I thought I was in the clear, but sure enough the hives crept up once I was completely off and I itched constantly for weeks. Thankfully, that seems to have finally resolved. I had a series of lymphatic drainage massages, I'm seeing a new acupuncturist, and followed up with my functional medicine doctor to see if they can provide any help. I know now that I have at least 2.5 months (possibly far more) before I start back on any sort of treatment. I pray my body can start to feel like itself at some point in that time.
A silver lining of our break in treatment is that we have more free time and flexibility on our hands. We have spent that free time splitting our time between Beaumont and Austin. My best friend's mother (who has basically been my second mom for 40 years) was diagnosed with stage four pancreatic cancer in early January. Kelly (bff) grew up across the street from me and our parents have now lived across the street from each other for 40 years. Kelly and her sweet little family have relocated from their home in Vancouver, WA to Beaumont for the foreseeable future. While I shed zero tears over our last failed transfer and have yet to fully grieve the loss of my own genetic children, the tears poured nonstop for the first several weeks after her diagnosis and still creep up here and there. Kelly's mom is truly an angel here on earth and her diagnosis is just another reminder (more like a slap in the face) that life isn't fair. Danny and I have become very good at living in complete limbo and being fully aware that life is not fair. This situation just continues to remind us of that. I will say though that our time in Beaumont has been really nice. My parents haven't complained about us being here making the dining room look like command central (our offices)...yet. Kelly and I have not spent more than a week or two together in any given year since college. Seeing her and her girls regularly is such a treat. Seeing my mom with them makes my heart swell. There is something about Beaumont, and people from Beaumont - seeing my friends swoop in and help her out however they can has been amazing. Running in Beaumont...not so amazing...but I am trying. I cannot even explain my awe over Danny in this situation. He swooped in immediately and said we can spend as much time in Beaumont as we need to. He then insisted on flying to Portland to drive from Washington state all the way to Texas with Kelly's husband and their two dogs. This is my best friend we are talking about here - not Danny's. He did not even meet them until four years ago and he is treating them like family. He has not complained once about spending our weekends driving back and forth, and is bending and flexing however he can to be here and help out. He lost his dad to cancer his first week of college so has an intimate understanding of what Kelly's family is going through. I have said recently that I hate the reason we are here, but am loving my time in Beaumont.
Switching gears from one tragic silver lining to another, my family has been affected by my infertility journey in a way we never expected. Late last July, my mom had been at my sister's house and they had been talking about me possibly needing donor eggs. My oldest nice, Molly, told her she was interested in donating. She told my mom she had done the research and wanted to help. My mom was excited to tell me, and I was cautiously thrilled to hear it. Having a child that was 25% my DNA vs 0% sounded amazing. I remember telling my mom at the end of that phone call "now Mom, I need you to not get too excited about this." She asked why and I reminded her that nothing works for us. Foreshadowing at its finest. A month later I got a frantic call from Molly (while I was at a funeral for a dear friend's dad of all places) and she was nearly inconsolable. We had gotten her AMH tested as a very first step in seeing if she could, in fact, be our donor, and her levels were almost off the charts low. My level was 2.84 and hers was 0.23. I told her that may have been a lab fluke and that we should get it tested again at a different lab. I also told her that if that is the case it does not automatically mean she cannot have kids of her own, but that she likely could not be a donor for us. AMH is an indicator of the # of eggs someone has. A low number indicates very few eggs would be available each month if trying to do IVF or egg freezing. Where I averaged about 20 eggs per IVF cycle, she could be as low as 2. Fast forward several months and Molly just had her second egg retrieval last Friday. She had her AMH re-tested twice and it finally landed at 0.17. She does have 15 eggs frozen now and we are all very thankful she had the success she has had. We know, due to my own dismal results, that 15 eggs is not any sort of guarantee, but that she at least has a much better shot than she possibly would have had she not known. Theoretically, her quality should be great because she is so young, but again, we know there are no guarantees. The tragedy is two-fold here: first and foremost, all three nieces have a diagnosis they never expected...one that could mean they could have a very hard time having their own genetic children. Second, it meant I no longer had a chance at having a related donor. My remaining female family members are all way over the age limit for egg donation. Note: my MIL offered Danny's sister's eggs when we initially told her about our IVF journey. I told her it was probably best if we did not have inbred children and she immediately agreed.
People have said "wow, if not for you, she would have never known." I say "no, if not for her incredibly generous offer to donate eggs, she would have never known." She was 24 at the time of her initial testing. Her two younger sisters have since been tested and also have very low AMH levels. They aren't to Molly's levels yet, but we have no idea what Molly's levels would have looked like four years ago. All three nieces will ultimately freeze their eggs in hopes of preserving their fertility. I had not posted or shared any of this too publicly as this was not my story to share. Molly told me she was happy for me to share as she is all about creating awareness. We have no idea why all three have a diminished ovarian reserve. We just know it is likely genetic and they were just born with fewer eggs. We lamented to the doctor that we would have loved to have known my sister's levels at any given time when she was younger because she had no trouble with fertility. He said "well, knowing that wouldn't change where you are now" which was very true. This diagnosis has been tough to swallow for their entire family, but Molly has had an incredible attitude throughout. They are thankful they stumbled upon the information and have been able to act on it. My experience has definitely helped them through this situation and I have been so glad to help. I keep saying every time I am able to help someone in some small way with their infertility journey, it makes our own struggles seem to have a little purpose. A little purpose, a little hope, a little joy - just enough to keep us going.
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