The Lunar Near Year on the 29th happened to fall on my 8 month-iversary and just in time for my January recap!
Highlights
I feel like I’ve made a lot of progress health wise but I also recognize that I’m still far away from my baseline. Nevertheless, I want to celebrate the progress, even if it is small.
- I “graduated” from in-home physical therapy to outpatient physical therapy! My focus with in-home physical therapy was activities of daily living, and the focus now will be on rebuilding strength and endurance.
- Several of my appointments are now decreasing in frequency (weekly immunology to every other week, monthly optometry visits to every 6 months, quarterly ENT visits to every 6 months, quarterly dermatology visits to every 6 months).
- I’m still doing IVIG every 3 weeks but we’ve been able to decrease the dose from 44g to 40g. We’re already seeing some signs of my body making its own IGG so we’re hoping with more time, I can make all of it without supplementation.
- I’m looking forward to my 9-month follow up at Fred Hutch at the end of February. We will be doing a big lab panel that will show how far along my immune system has rebuilt itself.
- The beginning of the year is always annoying because insurance’s calendar year resets itself. I have an excel spreadsheet with what appointments I’ve had, what visits insurance has processed, how much they’ve paid, how much I owe, how far that puts me away from my deductible and out of pocket max, what medications I need new prior authorizations for, who I’ve talked to on the phone, what the follow up is, when I should hear back, etc. Lucky for me, my type A personality shines in these types of things, and not to brag, but I’m kind of an expert at the insurance stuff (haha). I can only try to find humor in this unfortunate life circumstance! We’re one month into 2025 and I’ve almost hit my OOP max of $4K.
- I feel like I have less brain fog now and it’s prompted me to sign up for a weekly Spanish class at the local community college. It’s over zoom, and my class is filled with the retiree crowd. It’s so cute, really fun, and makes me feel “productive”. I did also sign up for a Mandarin class over zoom but I’m a little advanced for the class. Nevertheless, it’s still fun and gives me something to look forward to every week.
The Details
- 1/1: New Year’s Day is always a more relaxing day since nothing is open. I started the year with a Walk at Home (yes it’s like jazzercise) video with my mom and in the afternoon, we were able to do an outdoor walk with Maple in the afternoon. It’s an amazing feeling being able to exercise since a few months ago, I was not even able to get around the house. I’m grateful for being able to do the mundane parts of life.
- 1/2: I did a Walk at Home exercise video with my mom, did A LOT of administrative medical stuff (emailed my PCP to get an outpatient physical therapy referral, scheduled an oral medicine follow up, followed up on my glasses reimbursement from last year), helped my parents with their beginning of the year healthcare appointments, and coordinated Maple’s yearly physical and dental cleaning. Being on the phone all day to coordinate all these things took all week so I had to step away at various points to take a walk. I got to end the day FaceTiming with Jessica which is always so lovely because we are both just big goofballs that can talk about nothing for hours on end. The hardest part of all of this is not being able to travel to see friends from afar but I’ll settle for FaceTime for now.
- 1/6: I got to go on my first bigger “outing” to the Tulalip Lights & Ice at Quil Ceda Village which is about 30 minutes north of my house. They put up almost 8 million lights outside on the trees during the holidays from Thanksgiving to mid-January. It’s extremely crowded during the holidays, so my mom and I decided to earlier on a weekday when there aren’t as many people. The vendors were also not there when we went, but since I can’t eat out still, it wasn’t much of a big deal to me.
- 1/7: I saw Dr. Kalus, my dermatologist, and the good news is that I don’t have signs of skin GVHD. My hair is growing slower than is expected, but it could be due to a number of factors (i.e. the type of chemotherapy I got, the fact that I wasn’t able to eat for a while since I was vomiting a lot so my nutritional status was not optimized, the fact that I’m in a post-menopausal state, etc). I’m going to be patient and wait and see how things goes as time goes on. When I got home, I found out about the Palisades and Eaton fire. I had several friends who had to evacuate from the fires. Luckily their houses are fine, but what a heartbreaking situation for everyone.
- 1/8: I had my weekly visit with Dr. Chau in immunology. We decided to keep all my medications the same since I’m still experiencing some easy bruising, but luckily, my platelets are stable. I also got my third COVID vaccine. The other piece of exciting news is that we decided to trial run me being completely independent for a week with my mom going down to Northern California to visit my brother so I dropped my mom off at the airport after my appointment. I also had my first zoom Spanish class that I signed up for at the local community college class through continuing education. It turns out my class is a group of mostly retired folks, and it was so cute!
- 1/9: I saw Dr. Lam, my optometrist, and there are no signs of ocular GVHD. She also noticed some tear production in my eyes (previously I had very low tear production), and my corneal reflex test indicated that my corneal nerve regenerated after treatment. We decided to go down to every 6 month follow ups instead of the monthly we had been doing before. In the afternoon, I accompanied a friend to a dental appointment, and when I got home, I made dinner for myself for the first time in a long time. It was nice feeling of progress, but if I’m really honestly with myself, doing everything by myself all day was exhausting. I think because I’m still not able to eat out at restaurants and because I’m heavily focused on nutrition right now, there is a lot of time spent cooking, eating, dishes, cleaning, rinse and repeat all day everyday. I can totally see why people outsource many of these tasks.
- 1/10: My second full day of being independent consisted of walking Maple, making minestrone soup, more administrative medical tasks (getting referrals, finding providers to the referral). The highlight though was seeing Neesha & Forrest and their little ones Coco & Neville. Maple went crazy when she saw them!
- 1/11: I dropped Maple off to be groomed at Petco today, caught up with my NYC parents Ray & Sarah, ran errands (bank, gas), did laundry, and then caught up with my friend Steph.
- 1/12: I went on a walk with Martina today, FaceTimed with my friend Fei Fei who just had a baby boy, and caught up with my second mom, Ms. Abler! Other than that, today was another laundry day. We do a lot of laundry these days because I need to wash all of my stuff separately since I’m on some medications that are hazardous.
- 1/13: exercise, make ramen, beclomethasone express scripts claim, NCCN CE, Spanish HW
- 1/14: I ordered IVIG, walked Maple, made food for both lunch and dinner, and had my zoom Chinese class.
- 1/15: Today was my weekly appointment with Dr. Chau. My labs are stable, and we decided we could decrease the cadence of our visits to every other week. After getting home and eating lunch, in the afternoon, I had to submit some paperwork for insurance & schedule appointments with Dr. Chau until May. Getting appointments with specialists can be challenging since they fill up so quickly so I tend to have to book appointments 6 months out. I rounded out the night with my Spanish class.
- 1/16: My mom came back today from NorCal! I do feel pretty exhausted from doing everything by myself this past week. What I learned is that my endurance is not quite there yet, and that I need to build up the stamina to do all the household duties. With nutrition being a big focus of my recovery, prepping, cooking, eating, and cleaning take up the bulk of my day. I’m glad my mom is home to help again!
- 1/17: For once I was able to help my mom and attend a doctor’s appointment with her as she’s been having some neck, shoulder, and back pain.
- 1/18: Today was a treat as I was able to do a walk around Greenlake with my friend Christie, and then I walked around Ballard with Ariel who came to visit from LA and Beth’s family (mom & aunt) who were visiting from Riverside. It was such a sunny day in Seattle, a rarity this time of year, so I felt like I had to take advantage of being able to be outside. I have to say though, two activities a day is a lot for me, because when I got home, I crashed hard.
- 1/19: My friend Ayae came over, and while we intended on going for a walk, I was too tired (probably from the day before), so we sat far apart in my living/dining room and caught up instead.
- 1/20: Today was IVIG day so I got labs at Seattle Children’s in the morning, and then my nurse Gurbinder came to start the line. Unfortunately, I’m a hard stick and we had to call my regular nurse Jenni to come after being poked a few times. My dose did decrease from 44g to 40g, so the infusion time was a little bit shorter. I can’t wait for the day that I don’t have to do IVIG – I don’t know what that life is like since I’ve been doing IVIG since 2001 but I am excited!
- 1/23: I had my first outpatient physical therapy visit today. It was uplifting to hear my PT Kirsten tell me that I seemed “energetic.” I told her about my in-home PT and what we had been working on and how I’d like to focus on strength, endurance, and mobility now. She did notice that I was out of breath after being on the bike for 5 minutes, so we started with some stretching exercises for this week.
- 1/25: Maple had a dental cleaning today. Poor girl was so out of it when we picked her up, so we ended up taking a long nap on the couch in the afternoon after I picked her up.
- 1/26: I made some blueberry bagels from scratch today and they turned out so good! It was another sunny day here so I took my mom to Issaquah Highlands to see my friends Derrik & Chandler. I haven’t had the energy to go out there since coming back to Seattle, but since I’ve been feeling better these days, it was the perfect day to go out there for a walk! It’s been over a year since I’ve seen them, and I missed their beautiful wedding in Mexico last May. I think the hardest part about all of this is how long it’s been that I’ve seen many of my close friends in person.
- 1/28: There are a lot of superstitious about Lunar New Year. You’re not supposed to take out the trash, wash your clothes, or clean so we made sure to do it on New Year’s Eve. My mom also cooked a big feast for us.
- 1/29: I had my appointment with Dr. Chau today, and in the afternoon, my tennis partner Stephen came over and we were able to walk to the beach. It’s been over a year since I’ve seen him too but I’m glad we were able to catch up in person this time.
Looking into 2025
I always try to do some resolutions for the year. While 2025 will still look a little different than a “normal” year, I’d like to take the themes of slowing down from 2024 and extend it into 2025. I’ve always been a go go go kind of person, but I don’t think that’s sustainable in the long run. While 2024 was forced slowing down, and to some extent, so will 2025, I’d like to think it’s a much more toned down version.
Health – this will be the biggest focus of 2025.
- Start outpatient physical therapy (January)
- Start vaccinations (May)
- Get to my 1-year NIH visit (May)
- Start playing tennis again (TBD)
Travel – I’ll still be pretty limited in terms of traveling since I won’t be vaccinated against anything until I start in May, but after cold/flu season and when summer starts, I’ll be able to do a lot more outside.
- Local trips around WA
Career – I haven’t worked since January 2024, and I’m not sure what I’ll go back to when I’m ready since I can’t travel 70% of the time as my old job required, but I’m hopeful that I can find something else. After all of my hospitalizations this year, my doctors did have a stern conversation with me about realistic expectations and how I should wait until at least my 1-year mark to consider going back to work. I’m trying not to plan too far ahead because I’ve learned that this BMT process is so unpredictable, and I don’t want to disappoint myself if things don’t go to plan (again).
- Find a new job outside of the MSL role
- Don’t make work my whole personality – I’m the type of person that always puts 120% into work, that overachieves constantly which ultimately makes me overextend myself at my health’s expense so my goal for 2025 is to have clear boundaries with work.
Finances
- No buy 2025 – After watching the Netflix Buy Now documentary, I realized we’re in this constant consumerism state. I don’t need more stuff, so I’m really going to think twice about those Amazon purchases and only buy things that I need.
Personal
- Learn a language – I signed up for Mandarin and Spanish classes at the local community college from January to March over zoom. I figure this is a good way to feel like I’m accomplishing something but also being safe since it’s still cold/flu season. The classes are only a few hours a week and I think it’ll be something to look forward to that’s not just doctor’s appointments.
- Learn to sew – I originally wanted to take the sewing class at the community college in January, but since it’s in person and it’s cold/flu season, I’ll opt for a Spring or Summer class, maybe around April to June. In the meantime, I’ll be getting a sewing machine and start teaching myself.
- House projects – these are never ending but I figure I can chip away at these small things around the house and maybe learn to use some new power tools. This will definitely be later in the year when I have more energy.
- Continue journaling/blogging
- Read 1 book/month
- Volunteer with immune deficiency foundation
2025 still feels like it will be a lot of alone time, but I’m hoping that in the summer time, I’ll be able to do more things with friends as we can be outdoors and enjoy the nice weather!