Highlights
- I struggled with writing this month’s recap, not because I haven’t made progress, but because I thought I would have continued improvement this month like I did the last few months, but for some reason, I’m feeling much more fatigued. I think it’s a combination of doing more and also weaning my steroids which have also caused me to lose my appetite.
- I did my big 9-month lab draw to capture how my immune system is developing since transplant. My B and T cells are still developing. My CD4 count (T helper cells) are at 172 (normal is 500-1200) but since October 2024, they’ve gone up from 58 to 172. When CD4 counts are below 200, I have to be on prophylactic medications since I can’t protect myself from opportunistic infections. My BMT team, Dr. Carpenter, is very hopeful that by the 1 year mark in May, my CD4 count will be over 200.
- I’ve hit my out of pocket max of $4000 at the beginning of February. This is not so much a highlight but within the first month of the year, I usually hit my health insurance’s out of pocket max. I guess the good news is that all of my future bills for the rest of 2025 should all be $0!
- I’m still doing outpatient physical therapy. We are working on building strength and endurance now with squats, lunges, side steps with resistance bands, and as of last week, we added in some arms/core. It’s easy to take for granted all the things I used to be able to do because some of these simple exercises now make me so tired.
- I attempted to get on the sourdough train, but decided that since I don’t love sourdough bread, and a loaf is too much for me and my mom to eat, I’ll set my horizons on other breads I like eating more.
The Details
1/30 – I tapered my budesonide from 3mg daily to every other day. I’m excited to continue tapering the steroids so while I am still on hydrocortisone, beclomethasone, and budesonide steroids, the B&B doses have gone down significantly. i’m hopeful that I’ll be able to be off of them by the end of February but we’ll see. I spent the latter part of the day filling out 12+ pages of SSDI paperwork. I’m required to apply for SSDI since I’ve been out of work for over a year, but the process to get a decision takes over a year. In the meantime, they continue to send a lot of paperwork asking for proof, but have sent in over a year’s worth of medical documentation relating to my transplant.
1/31 – I had my second outpatient physical therapy session with Kirstin. Last week she gave me stretches for mobility, but this week we’re working on squats, side steps with resistance bands, and some single leg toe taps in a circle. I also was able to do 5 minutes on a bike with no resistance, but it was quite obvious I was breathing heavy by the end of it. On my way home, I picked up refills at Rite Aid, followed up on a claim I submitted to Aetna, and paid the bills for the claims that had been adjudicated for January 2025. Turns out, I hit my $4000 out of pocket maximum already and I’m waiting for some of the bills to pop up on the Seattle Children’s and UW side.
2/1 – I took Maple on a short walk today but was feeling pretty tired after so I ended up taking a long nap in the afternoon. By the time I had woken up, it was already dark out. It’s also pretty cold out today and it is supposed to snow so in addition to feeling fatigued, I had little motivation to do much else than rest. I was able to watch a NCCN (National Cancer Care Network) lecture – I figured while I’m home resting, I can get up to date on what’s been going on in the oncology world the last year since I’ve been pretty absent from it from not working. I have to say my attention span is horrible and my ability to digest information is much slower – maybe from chemo brain but maybe also I’m just slower now.
2/2 – As January 29th was Chinese New Year, my mom wanted to attend her the New Year’s celebration at the community service organization she volunteers at, Tzu Chi. While not an active volunteer in the Seattle chapter, the folks in Seattle have really helped me and my family the last few years that I’ve been sick. I didn’t attend the ceremony since it was indoors, but I was able to take Maple to a nearby park and enjoy the snow. After getting home, we found out that my mom’s travel buddy to Hawaii had fallen and fractured L2. Unfortunately she won’t be going to Hawaii with my mom.
2/3 – Since I planned all of the Hawaii trip, I spent most of today cancelling reservations and figuring out how to get the money back from flights and activities I had planned. Since I had used credit card points on a lot of these things, it was a lot harder to navigate in cancelling. On the bright side, Gordon coincidentally had the week off that we had planned this trip for my mom, so we were able to get a last minute ticket for him to go with her. I also had to order my IVIG supplies for my next infusion coming up. We also paid a visit to my mom’s travel buddy and dropped off some food.
2/5 – We dropped off food for my mom’s travel buddy again, and then I dropped my mom off at SeaTac for her trip to Hawaii with my brother. After getting home from the airport, I prepared for my Spanish class and called it an early night.
2/6 – I was feeling very fatigued today so I preemptivley cancelled my physical therapy session for tomorrow. I rested most of the day and paid off the medical bills that have started to populate in my MyChart portals. I had an appointment with my GI doctor, Dr. Hujoel. I told her that I’ve lost my appetite and have had looser stools since decreasing the beclomethasone and budesonide. We decided to continue the same dose and see if my stools got better over the week. If they did, we can continue to decrease the dose, but if not, then we will hold or go up depending on my symptoms. It really is an art balancing the tapering of steroids and symptoms. I ended the night with dinner with Beth and Steph, both of whom are always so gracious to come up to me since they know it takes a lot out of me to travel to meet them. I’m hoping when the weather gets better, I’ll be more motivated and have more energy to go out.
2/7 – I got my IVIG delivery.
2/8 – I went on a walk with Maple today in downtown Edmonds area while I waited for my friends Amy & Gabe to be done looking at open houses. We sat outside of Red Twig and caught up. I’m hoping that as the weather improves, I can do more outdoor hangouts. Steph came over later in the evening to help me put my bed back together since I washed my sheets. I’m not quite as strong anymore to be able to lift heavy things so it’s nice to have friends help with what used to be such simple tasks.
2/9 – I signed Maple up for a private agility session. Maple loves going to agility and while we haven’t done it iin overa year, she knew immediately when we got to the training place. After, I went over to watch the Super Bowl with Neesha & Forrest, and met their new dachshund puppy Luka who is just the cutest more adorable little nugget. I ended the night FaceTiming with my little “sister”/family friend Amy. It’s always so nice to catch up with childhood friends because it’s like you just pick up where you left off and they understand you and your family in a way that adult friends may not. They’ve really seen you through all stages of your life.
2/10 – I went to the lab this morning to get my IGG trough before IVIG. Today is also my big 9-month post transplant lab draw. I won’t get the results for a while since some of them are send outs but we’ll see how much progress I’ve made in the coming weeks. I ended up spending the rest of the day on the couch doing my IVIG. Hopefully only a few more of these infusions in my life! Later at night, I picked up my mom at PAE airport from her Hawaii trip. We wear n95 masks in the car since my mom was on a plane and we plan to have my mom in the basement for a few days to quarantine.
2/12 – I had a telemedicine appointment with Dr. Chau today. We decided to do telemedicine because everyone is sick. Dr. Chau told me that the hospital at Seattle Children’s is full and that every virus is rampant everywhere. We haven’t gotten back some of the more specialized immunology labs from Monday, but the regular labs all look stable. I spent the rest of the day coordinating care – scheduling my pap smear, updating my GI doctor about my stools, calling my long term disability provider Prudential, coordinating with my IVIG nurse for next time’s appointment. I also had therapy in the afternoon and Spanish in the evening. Unfortunately, my mom started to have a little tickle in her throat this afternoon, so we’re going to keep her quarantined downstairs for a little longer.
2/13 – I had my house’s yearly furnace maintenance done and then got to do a walk with Beth in the afternoon, except it started snowing like crazy on our walk down the Interurban. I’m proud of us for still going on one, but my drive home was a little dicey!
2/14 – I had another physical therapy session with Kirstin this afternoon and we are continuing to work on big muscle groups like my quads.
2/15 – Since my mom is downstairs, I’ve been preparing three meals a day for us. It’s pretty tiring to do fresh meals, and it seems like the day goes by quickly prepping breakfast, making breakfast, eating breakfast, cleaning up and then rinse and repeat for lunch and dinner. I’ve been having to take naps during the middle of the day for a few hours from the extra activity of prepping and cleaning up from meals.
2/18 – I followed up with Express Scripts today, my pharmacy insurance benefit manager (PBM) because I had submitted a claim back in December for a compounded medication. Usually, compounded medications are not covered, but I submitted a claim anyways because beclomethasone is listed in the NCCN guidelines for GVHD. In a compounded medication, each component has an NDC (national drug code). In my case, the drugs include beclomethasone and corn oil. What is most frustrating is that when you submit a claim, they run the NDC codes (in this case the two components) and if any of the NDCs are rejected, the whole claim is rejected. Because corn oil is over the counter, they rejected the claim so I have to submit an appeal. I also followed up with Prudential today since I hadn’t heard back from my claims manager when I left a voicemail last week. I also tried to make an appointment for a 3-month follow up with the GI doctor but their schedule for May/June isn’t out yet.
2/19 – My mom’s cold hasn’t gotten better so she went to see a internal medicine doctor at Kaiser who gave her steroids (prednisone) taper and I went and got cough medication. The doctor said that everyone she has seen has had a lingering cough for weeks to months with whatever virus they have. My claims manager from Prudential finally called me back but it’s challenging because I asked her what return to work would look like when I’m ready, but she didn’t have clear answers because when I am cleared to go back to work, I will be assigned a vocational rehabilitation specialist who is supposed to help me get back to work. However, I asked to speak to one beforehand to see what I could do to help prepare, but I can’t speak to one until I’ve been assigned to one. It’s somewhat of a catch 22 but I’ve started to reach out to old colleagues at J&J to see if there might be some upcoming roles in the May time frame that I could potentially do part time. I’m trying not to stress about it because there isn’t anything I can do until my body is ready and feeling less fatigued. It’s hard as a type A person who likes to plan everything out.
2/20 – I had an opportunity to catch up with my old manager, Sarah. It was lovely to feel so supported by someone that I worked with on a stretch assignment when I was at J&J.
2/21 – I had another physical therapy session with Kirstin today and we worked on the same exercises. I still get pretty winded when I do the exercises, but I’d like to think that over time, they will get easier. It hasn’t gotten easier yet but I know it takes time.
2/23 – I went and played tennis for the first time in two years with Forrest and Neesha at a drop-in class at Harbor Square. It was SO fun, but I think I may have over done it. I didn’t feel it in the moment – I think I was so excited to just do something normal again – but once I got home, took a shower and ate, I ended up lying in bed for the rest of the day. I did some stretches, but I definitely think I’ll feel it this week.
2/25 – I am so sore today from tennis, kind of barely able to move, but I had to get labs at Seattle Children’s and then hop on a telemedicine visit with Dr. Chau. All of my labs from the 10th are back, and while a lot of values are not quite normal like my T cells, Dr. Chau is very encouraged because the trend from October to December to February have improved. My chimerism (what percent is me vs. Gordon) is also 100% Gordon which is exactly what we want. I have a very strong graft from my brother so now it’s a waiting game for my own body to build up an immune system.
2/26 – Today is my big 9-month follow up at Fred Hutch. I saw oral medicine and Dr. Abasaeed said that the white streaks in my mouth are likely from the residual ulcers I had prior to my transplant. She doesn’t seem to think it’s oral GVHD so that was reassuring. I went and did a pulmonary function test after. The respiratory therapist, Tyler, said my numbers looked pretty similar to the one that I did 3 months ago, but I’ll know more when I see the pulmonologist on Friday. I saw the NP Kate and Dr. Carpenter after, who had some differing opinions on my treatment in terms of when to stop IVIG treatment, when to stop posaconazole (an antifungal), how to taper the steroids (beclomethasone & budesonide). They did agree on other aspects like the need to do a stimulation test to see if I am truly adrenally insufficient (it’s assumed I am since I’ve been on steroids for over a year, but it’s necessary to test for it if we’re planning to eventually pull me off steroids in totality). They also agreed that the immunosuppressant tacrolimus would be the last to be tapered. What I realized though, is that Dr. Chau in immunology is using different data than the BMT transplant team is in directing treatment. Neither are “right” or “wrong” but rather looking at different information can lead you to draw different conclusions. We decided that the experts would discuss among themselves and come up with a comprehensive plan. I did let them know that I was feeling increasingly fatigued and I had lost my appetite since tapering the steroids. We decided to change the timing in which I was taking my hydrocortisone (10mg in the morning, 5mg at noon, and 5mg at 5pm) to see if that mid-day dose would boost my energy. They were not overly concerned about my loss of appetite since I had not lost any weight but they did increase the beclomethasone for the next week to see if my appetite improves.
2/27 – Since yesterday was a long day at Fred Hutch, I spent most of the day resting and napping.
2/28 – I received forms from Prudential, my long term disability provider, that requested medical records from all of my doctors appointments including Seattle Children’s, UW, Fred Hutch, physical therapy, optometry, etc. This paperwork always takes so much time to put together. I also had my appointment with the Fred Hutch pulmonologist, Dr. Cheng, who said that my pulmonary function test looked good. I do have bronchiectesis (scarring on lungs) from prior upper respiratory infections but no signs of lung GVHD. I think the biggest challenge I have is whether I need to just accept the fact that my shorntess of breath upon exertion is just my new normal now but Dr. Cheng reassured me that I could still be deconditioned from years of being ill. I’ll keep my hopes up but it does make me sad sometimes that what I used to be able to do just a few years ago is not what I am able to do now. I took Maple on a walk and then headed to physical therapy later in the afternoon where Kirstin added on some upper body exercises for me in addition to lower body.
3/3 – I got my IGG trough labs done this morning, and while I’m supposed to get IVIG today, my nurse had a scheduling conflict so we rescheduled to tomorrow.
3/4 – I’m supposed to get IVIG today, but it turns out Dr. Chau and Dr. Carpenter had a chance to talk and we have a plan!
- We’re holding IVIG! This will be the first time since 2001 that I’ve “skipped” a dose. Dr. Chau is still going to be drawing my IGG levels to see how far they drop or maybe my body will continue to make its own and keep it at a normal range (that’s likely wishful thinking but one can dream). Fingers crossed that during this time, I don’t catch any bugs!
- We’re going to change the timing of when I take hydrocortisone to see if that helps with fatigue. The total daily dose will be the same, but we’ll do 10mg in the morning, 5mg in the afternoon for a little boost, and then 5mg at 5pm.
- We increased the beclomethasone to 1mg three times a day (instead of 1mg every other day) since that one is more linked to appetite and then we’ll continue with budesonide 3mg every other day for a week. If my stools are stable, then I can come off of it!
- We’re going to go down on the posaconazole dose to 100mg daily (from 200mg daily) but since posaconazole increases the tacrolimus level, we’re going to have to preemptively increase the tacrolimus dose if we drop the posaconazole dose. I’m a little nervous about this because tacrolimus has given me a lot of side effects.
- I’ll start vaccines at my next Fred Hutch visit which will be at the end of May/beginning of June.
Overall, I’m still making progress. I still have to be patient with myself and that’s something I’m continuously working on.