March Recap (10 months)

Highlights

• I’ve stopped IVIG! I have been getting IVIG every 3 to 4 weeks since 2001. I was supposed to get a dose on March 3rd and March 24th, so this is the first time in 24 years that I’ve “skipped” a dose. So far I have not gotten sick, but I have to admit there is a certain level of anxiety of all the “what ifs” that I’m experiencing, probably because IVIG has been such a big part of my life.
• I have been doing a lot independently this month as my mom went to visit my brother in Davis for a few weeks. Doing everything by myself has been uplifting my spirits because it makes me feel “normal” but I do have to be honest with myself that it is exhausting so there is still a reminder that things are not quite “normal” yet either. As slow as it may be, I am happy to continue trending in the right direction.
• I’ve continued to taper my medications. I discontinued one of three steroids, budesonide, which is used for lower GI GVHD (yay!!!) and I’m coming down on the dose of the prophylactic anti-fungal posaconazole. I’m also tapering another steroid, beclomethasone, for upper GI GVHD. Hopefully I can fully taper off of this next month.
• I’m trying to find the right balance between being safe without being a complete hermit. I know when COVID “ended,” there were all of these memes of people being socially awkward reintegrating back into society. I’m experiencing this now, but five years later, yet I still have restrictions because I haven’t been vaccinated and my immune system is still building, and once eradicated diseases (cough measles cough) are back on the rise. There is definitely anxiety on my part with finding the right balance, but I am so excited for the spring and summer because I know I’ll feel safer being able to do activities outdoors.
• I’m still having to take naps, but the frequency and duration of them are shorter so this must also mean progress!

What I’m looking forward to in April

• Tennis – There’s an athletic club near my house called Harbor Square, and they offer tennis lessons throughout the week, but Sunday Funday is the least serious class of them all. I figured this would be a good way to get back into tennis without feeling bad about my lack of endurance. I’m pretty wiped out for a few days after attending this, but I’m excited to continue going so that I can build up my stamina. My goal is to go every week on Sunday but will give myself grace if I don’t feel up for it.
• Spanish – I signed up for intermediate 2 Spanish at the local community college via zoom. We had a 3 week break from the last session so I haven’t practiced in a bit, but it will be nice to continue refreshing my memory of all the different tenses in Spanish that I forgot how to conjugate.
• Sewing class – I also signed up for a sewing class at the local community college. This will be the first in-person activity in an enclosed space that I’ve done since this whole transplant period of my life began. I figured this would still be relatively safe because I’m using my own machine, I’ll still wear a mask, and cold/flu season is ending as the class starts the last week of April. I think this will be a good indoor hobby to have during the winter months when hibernation season starts because as much as I don’t want to be reminded, I still won’t be vaccinated next winter for measles, mumps, rubella.
• Training with Maple – Maple has a lot of lovely qualities – she’s a big cuddle bug, she’s enthusiastic about everything, and she LOVES you, sometimes a little too much. And there are some aspects that we could use a little bit of work – loose leash walking, lunging at other dogs while on leash, learning to settle in public, polite greetings – just to name a few. We have been working a lot on loose leash walking. Right now, it’s bribery with treats, but I’m hoping with consistency over time, it will turn into a habit. Now that the weather is getting nicer, I’d like to also go sit at parks and have Maple learn how to settle down/not be so stimulated by the outside world. Maple wasn’t exactly set up for success with one since she’s a pandemic pup and we didn’t really go out much as a puppy, so this will be a new skillset she’ll have to learn.
• Friends – I’m starting to be open to having friends visit. With the spring/summer ahead, I’m feeling more comfortable with activities since we can be outdoors!

The Details

• 3/6 – Maple and I took a private lesson on manners. As a pandemic puppy, one thing that I did not do a good job at was having Maple learn polite greetings when guests come. Part of the problem is that we didn’t have people over during the pandemic, so the opportunity for practicing polite greetings was minimal. Add that to Maple’s natural demeanor to be overly excited, we get a jumping, barking, lunging doggo that wants to body slam you because she’s so happy you’re here. So we’re working on it. Thanks for your patience.

• 3/7 – I had physical therapy with Kirstin today. We’re still working on strength in my lower body and we added on some upper body movements today too. We’re taking it slowly so I don’t injure myself.
• 3/8 – Maple got a grooming today which means that I did several loads of laundry to clean of her blankets that cover the couch and my bed. Turns out doing 3 loads of Maple laundry is exhausting – it’s the first time I’ve done it in over a year.
• 3/10 – I had an OBGYN visit today with my regular physician and we did a pap smear as well as a colposcopy. Since I am an atypical patient, I do usually follow up every year which is more frequent than the average patient. Right now, I am seeing my regular OBGYN every 6 months as well as seeing the Fred Hutch transplant OBGYN every 6 months so watch for GVHD. I did also spend the rest of the day scheduling my 1-year long term follow up appointments (DEXA scan, PFT, BMT physician Dr. Carpenter, Kate/NP, pulmonologist, GI, OBGYN, oral medicine) because even though it’s a few months away, the physician schedules book out.
• 3/12 – I got labs in the morning and then had my bimonthly visit with Dr. Chau. She did have an opportunity to chat with Dr. Carpenter, the BMT doctor, and we decided on an overall plan on how to taper my medications. They both agreed we’d do this in a step wise fashion so if any issues come up, we can attribute it to a specific change. We decided to decrease the posaconazole dose from 200 mg to 100 mg daily. I also then had therapy at home.
• 3/13 – I was really fatigued today, probably because of the long appointment I had yesterday, so a nap was much needed. I also discontinued one of the three steroids I was on today – budesonide, for lower GI GVHD.
• 3/14 – I took Maple to an agility class today – the first one we’ve gone to in 2 years. Maple was so excited and she remembered most everything. The funny thing though is that we were in a class with 2 collies and a german shepard who were all very advanced. I was slightly mortified – it’s like a tee ball tournament where your kid misses the ball and runs the wrong way – but all was fine because we are just here for fun. I stopped by 99 ranch on the way home, and on Friday evening, the store is pretty empty. Afterwards, I paid a >$1K bill to Providence, and that should be the last medical bill I will need to pay for the year as I’ve paid my out of pocket max for in-network expenses.
• 3/15 – I made dinner with Beth, Steph, and Long. It’s the most amount of people I’ve had over in my house, but just to be safe, everyone sat at the dining table, while I sat in the living room.
• 3/16 – I went to play tennis at Sunday Funday. I still had to take breaks every now and then compared to everyone else, but I’m glad I showed up. I ended up spending the rest of the day at home.
• 3/17 – I got a massage today which was very timely given how sore I was from tennis. While I do still feel very stiff, more activity with massage and physical therapy exercises are very helpful.
• 3/18 – I met with my BMT doctor at the NIH, Dr. Arnold, today over zoom. I had reached out because I wanted to know if my numbers at my 9-month follow up was better, worse, or about the same as other patients on the same clinical trial that I am on. I recognize that this clinical trial includes a bunch of rare disease patients and all of our mutations are different, so it is challenging to truly compare, but I needed some reassurance that I wasn’t an outlier that was so slow compared to everyone else. Dr. Arnold assured me that I fell in the middle of the pack. She also encouraged me to start doing more activities, and she reminded me that the whole point of this transplant was that so one day I could have a normal life. It’s interesting that my three main doctors are on a spectrum in terms of their comfort with what I can/cannot do at this point of transplant. Dr. Chau is the most conservative – this makes sense because Dr. Chau has seen me almost die on a few occasions. Dr. Carpenter is the middle ground – this makes sense because he saw me very sick/hospitalized from August to November but he also got to see me feel better by February. Dr. Arnold is the most liberal – this makes sense because she sends patients home at the 3-month mark and doesn’t really see them again until the 1-year mark where patients are usually doing much better. Every provider has his/her own biases and I am trying to figure out where on the spectrum I feel comfortable falling. It’s a work in progress but there is a level of anxiety that I don’t think I anticipated feeling.
• 3/19 – I had another physical therapy session with Kirstin. She’s happy with my progress. I also went to purchase a sewing machine at the specialty shop next door to PT.
• 3/20 – I didn’t have an appointment with Alice this week but since we changed some of my medications, she did want me to get labs done. I ended up bringing Maple so we could go to Magnuson dog park after. I also ended the day with therapy to work through some of the anxiety I realized I was experiencing from this transition of doing “normal” things again.
• 3/21 – Maple and I had agility class today, we also went on a walk at Shoreview Park in the morning.
• 3/22 – I went on a walk with Christie at Greenlake today, and I finally had my first “outside” food in a year. I got a chai latte while Christie and I walked the lake. In the afternoon, I had a friend from LA, Gena, visiting her family, so I got to see her as well.
• 3/23 – I played tennis at Sunday Funday again, and usually after the tennis class, I’m pretty tired so there’s not much that happens after other than potentially catching up with a friend over FaceTime.
• 3/24 – I had therapy today, a quick sewing class at the place I got my sewing machine, and I submitted claims to Aetna online.
• 3/25 – I was recently approved for social security disability insurance (SSDI) as I’ve been on disability since January 2024. Because I was approved, I had to retroactively pay back Prudential, my long term disability company. Prudential works with a third party company, Allsup, to help people apply for SSDI, and once Allsup knows that you’re approved, they work with Prudential to figure out what is owed back to them. It’s a lot of cooks in the kitchen, a lot of paperwork, and a lot of coordination. I would have never known about even applying for SSDI, how to do it, what it means, etc. I’m not sure how people navigate the system unless there is someone telling you to do it. I also followed up on a compounded prescription claim with Express Scripts from December 2024. Working with insurance is a big headache, and it takes so much time out of my day to follow up on these things.
• 3/26 – I got labs in the morning and then saw Dr. Chau afterwards. I had some follow up items with Allsup and Prudential to button up after I got home. I also got to taper another steroid, beclomethasone from 1mg twice a day to 1mg daily. If all goes well, I can discontinue this next week. Unfortunately, because my posaconazole level was not high enough, we did have to go up on the dose from 100mg daily to switching 100mg/200mg on alternating days.
• 3/27 – This month, I’ve been hearing rodents in the ceiling of my basement. Oddly enough, the attics on the third floor and main floor and the crawl space in the basement are all clean and the traps are untouched, but the attic on the basement, which has no access point (by a human at least), is where I’m hearing noises. The team that replaced my insulation last year before I got back from the NIH came to check all the traps and wired up some areas that may be entry points. I did end up hearing noises later in the evening, but it could be from rodents already trapped inside. I also have a swarm of ants coming into the house from the dining room. It’s a frustrating battle with all these pests.
• 3/28 – I had agility with Maple, and then had dinner with Beth in the evening.
• 3/29 – I went on a walk with Martina, and it was lovely to see her little kiddos.
• 3/30 – I went to Sunday Funday and vegged the rest of the day.
• 3/31 – Today was a big cleaning day – many loads of laundry, trash, compost, recycling, my bathroom cleanup. All of these tasks take the whole day for me now and have me pretty wiped out but I’m happy I can even do this!