Freezing My Eggos (April 2024)

Wednesday, April 10, 2024

I’m having all the feels today saying bye to Seattle for four months.

“Stopping life” so I can move on with my life.

Feeling grateful for my parents and family but also feeling sad that they even have to take this time away to help me.

Feeling relatively okay health wise right now, but knowing I’ll be in the shits in a month.

Saying bye to Maple but knowing that she will be in great hands with Forrest, Neesha, Brady, Neville, and Coco. I am missing the morning greetings, the snuggles at night, the automatic doorbell notifying us of visitors. I’m missing her constant presence, her excitement at the little things. I hope she doesn’t think I’m never coming back … and I hope she forgives me for the god awful haircut (oops) I gave her right before I dropped her off at Forrest and Neesha’s. Big shout out to Forrest and Neesha for lowering my anxiety about leaving Seattle.

Some cute pictures of Maple when I’m missing her. Sometimes when I’m not doom scrolling, I’ll look at old videos of this goober.

Missing another Seattle summer but also getting to experience Spring and Summer on the East Coast.

All the feels today…

Thursday, April 11, 2024

We woke up at the crack of dawn to head to the airport. My parents are nervous travelers and since my dad doesn’t have TSA precheck, my mom wanted to give us ample time to get to the airport and through security, which really just means we showed up at the airport 2 hours early. I got to take my parents to the Priority Pass lounge, and their minds were blown. Free food – omelette, smoothies, and bagels? We got some happy campers. Look at my cutie parents at 7am!

Friday, April 12, 2024

Day 1 of Fertility – Ultrasound #1

Today really feels like the start of preparing for the transplant. Up until now, my job has been to gain weight and stay healthy so that I can have the best outcome for my transplant. But today I start fertility preservation, because the conditioning chemotherapy regimen that I’ll get next month will make me lose ovarian function. I’ll go into early menopause, so if there really is any chance that I want to have biological kids, now is the time to freeze my eggs.

My day started at 8am where I went to go get labs, and then headed down to the OBYGN clinic to see Dr. Selena Park. I had been on birth control for the last few weeks prior to my arrival to suppress my cycle – this was done because I have a short time frame to be able to do one cycle of egg freezing. She counted 8 eggs on one ovary, and one egg on the other ovary – the follicles are very small at this point (because the birth control kept them that way), but she prescribed me two medications that will help my follicles grow over the next few weeks. I’ll be on Menopur and Follistim and will plan to come back in 5 days to see how my follicles are growing.

After my appointment, I headed to sign consent forms for one of the many clinical trials I will be on as a patient at the NIH. I met with the research nurse, Christine, and the patient care coordinator, Kacie, on the National Cancer Institute (NCI) side. They shared logistics of how to get a voucher for meals at the voucher’s office, where I needed to go to get badges for my parents, and just general tips on how to get settled here.

So far I’m on these three studies:

1. Detection and Characterization of Host Defense Defects – this study is on the National Institute of Allergy and Infectious Diseases (NIAID) side. Basically, it’s a study that allows them to follow the history of my disease.
2. Data Collection, Clinical Care and Interventions in CCR, NCI – this study is on the NCI side and again allows them to collect data and follow the history of my disease.
3. A Phase II Study of Allogeneic Hematopoietic Stem Cell Transplant for Patients with Inborn Errors of Immunity – this study is the conditioning regimen that I’ll be getting before transplant. They’ve decided to use alemtuzumab, fludarabine, and busulfan for conditioning starting Day -14 prior to transplant.

We headed back to the Safra Lodge near the NIH hospital in the afternoon, made some lunch, and then headed out to the downtown area to go grocery shopping at Trader Joe’s. My parents aren’t used to not having a car, but I pitched it as an afternoon walk/exercise. It’s been a long few days! I ended the day doing my Menopur and Follistim injections which I’ll do everyday and have a checkup on day 5 (Tuesday).

1. Menopur (menotropins): it contains two different hormones that are naturally found in the body: follicle stimulating hormone (FSH) and luteneizing hormone (LH). FSH and LH are the two hormones that prepare your eggs for ovulation.
2. Follistim: it acts like naturally produced FSH by stimulating an egg to develop and mature in the ovary.

In terms of where we are staying…

The NIH has two housing options for patients that are being treated – Children’s Inn and Safra Lodge. We’re staying at the Safra Lodge – it’s this beautiful building that is built in the style of an early 1900s English manor. The rooms are very modest – we have two full-sized beds in a room, there’s a communal kitchen, a small workout area with a treadmill, elliptical, and bike, and small library, and a common area with a foosball table and some puzzles! It’s not anything fancy, but it is nice that they provide this for the patients and their families. The lodge can accommodate 34 families, but there’s about 15 families here right now. It’s kind of an interesting interacting with people here – we all know we’re here because of some traumatic health issue (most of the time people assume one of my parents is the patient lol), but it’s kind of a dance to strike up conversation about what they’re here for. Some people are very open, others are more reserved. In my first day here, we’ve met a Hungarian guy, maybe in his early 40s, who is here supporting his wife who just had surgery for a 20cm gastrointestinal stromal tumor (GIST). She just got out of the ICU today (yay!), was able to ambulate a bit, and they’re hoping to go back home to Hungary by the end of the month.

While this place is so beautiful, a few funny things have happened since we’ve arrived.

• Their HVAC system was down the first night we were here so it was 75 and warm in the room.
• Part of the house flooded today due to the HVAC system so drywall repair will be happening throughout the week next week.
• The hot water was down for several hours last night so my dad and mom had to take quick cold showers.

What this tells me is that we’re all just putting up a front. We may all look put together on the outside, but we’re all just falling apart on the inside. We’re all just trying out best to make it in this crazy journey called life.

Saturday, April 13, 2024

Day 2 of Fertility

I don’t think I realized how I tired I was from all the traveling and getting settled the last few days. I slept in pretty late today and didn’t get the day started until the afternoon.

After eating lunch, my parents and I went on a walk to the neighborhood. Bethesda is an extremely affluent area – the houses are all at least $2 million and perfectly manicured. The Kwanzan cherry blossoms are in bloom and are scattered all over the neighborhood.

Sunday, April 14, 2024

Day 3 of Fertility

Today was another down time day. I wanted to take my parents to see the cherry blossoms. The internet said that the Kenwood neighborhood of Bethesda. In the early 1930s and 1940s, a local developer planted cherry trees as a way to promote the neighborhood to potential home buyers. There are now over 1,200 trees in the Kenwood neighborhood that bloom tiny white flowers in the Spring. We got a good 2.5 mile walk in, but unfortunately, I think these particular cherry trees already finished blooming last week.

Monday, April 15, 2024

Day 4 of Fertility

Today I had an anesthesia appointment at the Walter Reed military base. For reasons unknown to me, the egg retrieval process is done at the military hospital, not at the NIH. It was a pretty uneventful day as the anesthesiologist just asked about my history and physical. We got to spend the rest of the day taking a walk around the NIH campus and seeing lots of beautiful trees in bloom.

Tuesday, April 16, 2024

Day 5 of Fertility – Ultrasound #2

I’ve given myself shots of Menopur and Follistim the last four days, so today is Day 5 of my journey of egg freezing. I saw Dr. Selena Park again and she was able to look at my ovaries and the follicles growing in me today. She visualized 8 on the right side and 4 on the left side, which is in line with someone of my age. To be honest, I have a lot of mixed feelings about have biological children, but the Type A planner in me wants to have all the options so here we are.

Of course, this doesn’t stop me from overthinking everything because I’m me and that’s just what my brain does. Being a scientist, I’m always looking at the data and counting the odds, and it doesn’t seem great for me because at each step of the way, there is some level of attrition.

Even though they see around 12 follicles right now, the number of mature eggs that are retrieved and able to be frozen will likely be around 70-80% of those follicles so we’re down to 8-10 mature eggs. Since I am not fertilizing these eggs, the eggs will go straight into storage, but when/if I do decide to use them, there will be some loss there as well so we’re down to around 6-8 eggs. When the eggs are fertilized with sperm, not all of them will become Day 3 embryos – another time for attrition so maybe we’re down to like 4-6 eggs. And because I know I have a genetic mutation, I can expect that 50% of them will be affected. By then, I may only have a few viable embryos and even then, would they be able to take in my uterus or someone else’s? I guess there’s really no point in calculating all the percentages, because at the end of the day, if it’s not meant to be to have a biological kiddo, it’s not meant to be, but the over-thinker in me sure does like to keep my brain awake at night! Can anyone else relate?!

Wednesday, April 17, 2024

Day 6 of Fertility

Today I had an appointment with my transplant team, Dr. Arnold (transplanter), Erin (PA), and Christine (research nurse). I’m basically being taken care of by a bunch of badass women, all of whom I’d actually be friends with in real life, but not sure they’re allowed to do that with their patients. IDK. I’ll try anyways 🙂 I signed some more consent forms, I got the doctor to say it was okay to have Maple come back home when I get back to Seattle. She even said it was okay for Maple to sleep with me, to which my mom glared at her (LOL). I told Dr. Arnold “oh no, you got the Asian mom glare.” Luckily, we were in the room with other animal lovers so my mom didn’t get much support. I have three witnesses, and I’m saying it on the internet right now!

Thursday, April 18, 2024

Day 7 of Fertility

Today was a free day which really just means going on an outing to grocery shop. Since we don’t have a car here, we have to rely on the shuttles to take us from campus to the hotels.

Friday, April 19, 2024

Day 8 of Fertility – Ultrasound #3

Good news: my eggos are growing at a good rate and size.

Bad news: it seems like I may only have 7 eggs on one side and 3 on the other (all ranging in size from 7mm to 18mm). Even though I have around 10 eggs, not all of them will likely be mature and able to be frozen so it looks like I may not have double digits.

However, Dr. Park did say that even though we see 10, there is always a possibility that during the retrieval, we may be able to get more (which I didn’t think would happen but I guess it can sometimes).

Now What?

When the eggs get to be around 14 mm in size or larger, there is a chance that ovulation may happen, which we don’t want to happen. They’ve started me on another medication called Ganirelix to prevent premature ovulation. It’s another SQ injection and I’ll be giving it to myself every morning in addition to the other two medications that I give myself in the evening.

I’ll go back again on Monday to see how the eggs are growing, and then depending on what they look like, I may get something called a trigger shot. Once I get the trigger shot, the ideal timing for retrieval is 36 hours after. It looks like retrieval day will either be Wednesday or Thursday next week!

Cool People I’ve Met

Shalon is someone that I’ll be seeing on a regular basis. She’s the lady in the voucher’s office. I’ve made it part of my weekly routine to stop by her office on Fridays to fill out the voucher paperwork as I get $10 a day on clinic days for food while I’m here (and not in the actual hospital). In any case, we’ve hit it off the last two times and I’ve been able to get to know her story.

Most people that I’ve met here have 2 jobs. Shalon works in the voucher’s office processing paperwork for patients 7:30-4pm M-F, but then works as a pharmacy technician in the evening at another hospital from 7pm-7am. She works 80 hours a week!!! She told me how she used to work at an independent pharmacy in DC, but was held at gunpoint when the thieves came in and stole Promethazine with Codeine. When the police came to take the report, the independent pharmacy owners indicated that their cameras were not working and were just there to deter people. To add to the injury, the thieves showed up gain the following day. Not surprisingly, that was a traumatizing experience for her, so she left that role. She also mentioned during COVID, while the owners of the independent pharmacy did receive the PPE loan to pay their employees, the owners did not pay the employees their full salary. As a result, many of them fell behind on their daily bills, as was the case for her.

What’s so crazy is that she has to work these two jobs to make ends meet. Her hospital job provides her benefits, and the voucher office role is a contract role so unfortunately she cannot get federal benefits. I just wish life were a little bit easier but I’ll bring her some coffee next week when I see her as a little pick me up!

Saturday, April 21, 2024

Day 9 of Fertility

Nothing super notable today. I’m still on Ganirelix to prevent early ovulation in the morning, and Menopur and Follistim at night to continue growing my follicles.

Sunday, April 22, 2024

Day 10 of Fertility

Same dealio today. We saw some wildlife today while we were sitting at the dining room. Apparently we may even see deer frolicking along the campus.

I met another person here for a bone marrow transplant today. Darcy is here with her husband from Utah. They drove all the way out here over a month ago, but had two donors fall through unfortunately. We commiserated over how our lives have been on hold for the last 5 years waiting for our respective transplants and the emotional rollercoaster we’ve been on when our transplants were cancelled/pushed back. We’re all both ready to move on with our respective lives, but we also know it’ll be about another year or two before things can go back to “normal.” Her husband is about a month ahead of me, as his transplant day is on Thursday, April 25th. He is also here for a rare autoimmune disease called VEXAS, and it’s caused by a mutation in the UBA1 gene that’s located on the X chromosome. Luckily for him, the mutation occurs randomly later in life, so it’s not something that’s passed down to his offspring. She mentioned that her husband is the 7th patient here at the NIH to be transplanted. Apparently, the UBA1 gene, and subsequently VEXAS disease, was actually discovered at the NIH in 2020, which again confirms for me that a) science is SO cool and b) I am definitely at the right place to be doing my transplant.

Tomorrow is a big day! Ultrasound #4, possible trigger shot, and IVIG. Jam packed.