December Recap & Reflections
December was pretty uneventful in terms of health scares, and that is the best news ever! Boring is amazing in my book, at least for this year! It appears that my B and T cells are starting to come in and my B cells might even be making immunoglobulins (when they never did pre-transplant). I’m cautiously optimistic! On the other hand, my platelets and neutrophils have slowly been downtrending since mid-November. We’re not sure why and Dr. Carpenter, my BMT doc, says it is unusual, but since it’s still in a decent range, we’re just planning on watching closely. I still have about 3 appointments a week and a lot of medical administrative follow up after each appointment, so taking care of myself is still my full-time job – focusing on nutrition, going to doctor’s appointments, organizing all my medications/future appointments/insurance claims, and staying active.
Some fun things I’ve been doing now that I have more energy:
- Making food from scratch. I started on bread – cinnamon raisin bagels, Hawaiian bread, honey rolls – and I think I may go down the sourdough rabbit hole once I get a starter from Beth!
- Being more active with jazzercise-like videos with my mom and one walk a day with Maple! Maple is thriving with my routine and homebody lifestyle.
- Going on one outing a day – while a normal person might not think of it as an outing, I have enough energy to do one outing a day – something like driving to Costco and walking around the parking lot while mom goes in and shops has been great for my mental health. It’s just a change in scenery from my living room couch.
- Reading – I feel like my ability to concentrate this year has dramatically declined, partly because of chemotherapy, partly because of how I’m feeling, partly because doomscrolling and those dopamine hits. But I’ve finished 6 books this year and I’m really finding joy in slowing down and having a real hard cover book in hand.
I’m not quite at normal yet and I know it’s still a bit away, but the progress I’ve made this month has made me feel like there is actually a light at the end of the tunnel. It’s the first time I’ve felt this all year, and it’s made my mood that much better!
What a year it has been. I debated sending out a card this year, but I figured everyone is bald here, including Maple, in solidarity with me, and I am so thankful for all the support from everyone.
Week 1 (12/1-12/7)
- 12/2: My week started with in-home physical therapy with Ryan from Providence. We’ve made a lot of progress the last few months with my being able to do more activities of daily living – laundry, walking Maple, washing dishes, preparing food, vacuuming. Mom is still helping with going into grocery stores and cleaning my bathroom but I feel uplifted being able to do some “normal” household chores. We’ll have one more session before the end of the year, and I’ll graduate to outpatient physical therapy! I think that will be good for me because I’ll get out of the house AND the outpatient PT places have more equipment than what home physical therapy provides. Progress!
- 12/4: I had my weekly appointment of labs and then Dr. Chau. Things appear to be stable for the time being, and I’ll get more labs in a few days to see what my IGG trough is before I get IVIG. I’m still doing weekly visits with Dr. Chau, but I think given how up and down things are, we’re not quite ready to space them out more.
- 12/5: I saw Dr. Anita Lam, the optometrist, to follow up on my dry eyes, blurry vision, corneal nerve degeneration, and any post transplant complications like GVHD. So far, there are no signs of GVHD in my eyes, my dry eyes are better (she said she saw some tear production!), my corneal nerve has some reflex now with my right better than my left, and my blurry vision has improved! We’ll continue steroid eye drops and Refresh tears and check back in a month. The most frustrating part of this visit though, was that they were running late by 2 hours. My 10:30am appointment ended up being a 12:30pm appointment. This is often the reality of doctor’s appointments – what is supposed to be a 30 minute appointment can take up half of the day. I left my house at 9:30am and didn’t get home until 2pm.
- 12/6: Today was mainly medical administrative day – receiving my IVIG delivery, gathering all of my supplies for next week, picking up prescriptions at the pharmacy. I was able to make some home made cinnamon raisin bagels from scratch in my downtime.
Week 2 (12/8-/12/14)
- 12/9: I had to go to the lab on Monday because today is IVIG day and I need an IGG trough before I do my infusion. After going to the lab at Seattle Children’s, I went home to do IVIG which translates to couch cuddles with Maple while the IV runs for 3-4 hours.
- 12/10: I have been having some chest pressure so Dr. Chau had ordered an EKG just to be safe. I was able to get this done at the internal medicine clinic with the resident at UW. Later that afternoon, Gordon arrived driving from NorCal this week to bring up my cousin’s Mazda 6 car that she no longer needed and since I had to get rid of my company car, I was in need of a car but could not justify buying something brand new. I also decided I wanted to start volunteering with the Immune Deficiency Foundation so I did a little meet and greet virtually that evening.
- 12/11: I had my usual Dr. Chau visit at Seattle Children’s. We talked about the extra labs that she ordered this week. Dr. Chau ordered some additional tests this week, specifically something called lymphocyte subsets. This looks at how many B and T cells I have. Prior to transplant, my B and T cells were abysmal that they would be “too few to quantify.” The good news is that I do now produce lymphocytes, and while the numbers are still low, they are enough that I can get an actual number! I also did an IGG trough, and it was 951 (we like them to be above 1000), which may represent that my B cells are starting to work!
- 12/12: Gordon helped me do a lot of household tasks that I haven’t been able to do myself like clean the Dyson vacuum, change the air filters on the air purifiers, clean this light in my shower room, and get my new Mazda 6 ready for me to drive! It was a really short trip for Gordon and we took him to SeaTac later that afternoon. I wish he could have stayed longer, but it was so nice of him to drive up the car from SoCal for me (no bomb cyclone to interrupt his drive this time).
- 12/13: I saw Dr. Dean in oral medicine at Fred Hutch because this white streak on the top of my tongue appeared a week ago. It’s not painful and I’m not experiencing any issues with eating, but it’s a new development. Dr. Dean did officially diagnose me with chronic oral GVHD but on the grading scale of oral GVHD, he gave me the lowest score and no specific interventions are needed at this time. If it starts to impact my quality of life and ability to eat, we’ll do something but for now, we just watch and wait. I’ll come back to see him in about 3 months.
- 12/14: I had a surprise visit from my friend Jean and her baby Andi! We were able to sit far away from one another and masked.
Week 3 (12/15-12/21)
- 12/15: I had the energy to go on a longer walk with my friend Ayae today. It’s always nice to catch up with friends.
- 12/16: I had my last in-home physical therapy session with Ryan this week. I figured I could do exercises on my own for the rest of the year. I’m doing these 30 minute walk at home exercises with my mom (think jazzercise lol). It’s a good way to get steps in when it’s cold outside, and it also encourages my mom to do some exercise (these are the only videos where my mom won’t ask how many more minutes throughout).
- 12/17: Today was mostly a medical administrative day: submitting super bills from therapy to Aetna, submit my eye glasses reimbursement to EyeMed Vision, submit the out of pocket claim to Express Scripts for the compounded beclomethasone. It all seems easy, but filling out all the forms, submitting it on various portals, reminding myself to follow up on these claims 2-4 weeks or more after – it all takes time. Luckily I’m good at being organized, but it feels like it shouldn’t have to be this way in healthcare. On another note, I learned to install some new windshield wipers on my car and got to put on a new GoodtoGo sticker in my car.
- 12/18: I got labs this morning before seeing Dr. Chau, and we decided to start tapering one of my immunosuppressants. I am still on a lot of steroids (hydrocortisone, beclomethasone, budesonide) and another immunosuppressant (tacrolimus) but instead of taking beclomethasone 4 times a day, I’m going down to twice a day. It’ll be a slow taper, but isn’t that the theme of my life this year?
- 12/19: Today was another medical administrative day: picking up refills at Rite Aid and my mom had a PCP appointment. I feel like my mom has delayed her care this whole year because of me, and since I’m a little bit more stable now, it seemed like a good time for my mom to do some self care. Unfortunately, my mom has been having some shoulder and forearm pain so she was able to do an x-ray after her appointment, but her PCP did want her to follow up with an ultrasound, MRI, acupuncture, and physical therapy.
- 12/20: Today I helped my mom schedule an x-ray, MRI, ultrasound, and physical therapy. Since my mom is a Kaiser SoCal members, I had to call member services to verify if acupuncture services were covered while she’s visiting in WA. The first person said we were covered, but after I called again, I got a more experienced member services person who said acupuncture is not covered as a visiting member. Healthcare really shouldn’t be this complicated, but somehow it is.
Week 4 (12/22-12/28)
- 12/22: I’ve been on a proton pump inhibitor for gastritis since early October and it’s usually not great to be on a PPI for a long period of time so we’ve been tapering my dose of the PPI. I finally got to discontinue my esomeprazole 20mg. It’s always a good feeling when I get to stop a medication rather than add another one on.
- 12/23: Today was my 6-week follow up with pulmonology since my last pulmonary function test was worse from my baseline. I had to get a high-dose CT of my chest, do another pulmonary function test, and then see Dr. Cheng. I did also have to stop by pharmacy to get more beclomethasone because pharmacies like RiteAid aren’t able to do compounded medications. After spending all morning there, I came home and ordered my IVIG (more medical administrative stuff).
- 12/24: I had my weekly labs/Dr. Chau visit today. While I feel fine, my platelets and neutrophils have been slowly downtrending since mid-November. While the drops haven’t been big, the trend overall has been a downward slope. I don’t necessarily feel different – maybe a tad more fatigued – it is not reassuring that it’s downtrending. I am also getting some petechiae (small red spots) on my arms from scratching which is a sign of nonfunctional platelets or low platelets. I did have to go to the lab to get a finger prick PTT/INR after but it didn’t show anything abnormal. Dr. Chau instructed that if I get bigger bruises or have blood in stool/urine or have blood when I’m flossing, then I need to go to the ED. So far no signs of that.
- 12/25: I spent all of Christmas making food from scratch and then Beth came over and we had our holiday meal with my mom.
- 12/26: Another medical administrative day – scheduling my pulmonary follow up with a PFT and Dr. Cheng and then ordering my IVIG. Every 3 weeks of IVIG feels like it goes by so quickly!
- 12/27: I was able to receive my IVIG delivery today and get it all ready for my infusion on Sunday. Later that afternoon, Beth and Joscelyn came over and we were able to do a nice walk to the beach and the dogs all ran around the bluff. I’m lucky that the beach is a 10 minute walk from my house.
Week 5 (12/29-12/31)
- 12/29: I had to get labs this morning before my IVIG and then spent the rest of the day on the couch getting my infusion. I’ve been doing these infusions every 3-4 weeks since 2001, but the hope is that I’ll be off of them once my immune system actually works at full capacity. I don’t even know what that life would look like, but the idea of it sounds amazing!
- 12/30: I saw Dr. Humphreys, my ENT, today and he said my sinuses look perfect! While there is always the possibility of GVHD in the sinuses, he said I showed no signs of that which is reassuring since I have oral and GI GVHD. I’ll see him again in 6 months on my birthday which is already an improvement as I usually see my specialists every 3 months! Mom had a follow up phone call with her PCP to go over some of her ultrasound and x-ray results and she is ultimately referred to neurosurgery but we’ll need to get the MRI done first which we were able to go down to Bellevue to get this evening.
- 12/31: I have my Dr. Chau visit today and my platelets and neutrophils are around the same as last week but I am showing signs of easy bruising. We’re calling it alloimmune GVHD, meaning my new immune system is attacking some remnants of my old immune system. Not great, but since my numbers are still in the okay range, we’ll keep watching and waiting. In the meantime, I am tapering budesonide to once a day instead of twice a day! I can’t believe it’s the end of the year already.
2024 – it’s been real. I’m glad it’s over. I don’t wish this year on anyone, not even my worst enemy. Despite the rough year, I’m proud of where things are and how much I accomplished!