November Recap: I made it to half a year! November was a month of a lot of rest. Now that it gets dark around 4:30 PM PST, it really gives me a good excuse to just not do anything!
| 10/29 | 11/6 | 11/13 | 11/19 | 11/27 | |
| WBC (4.5-11.0) | 5.5 | 6.3 | 7.9 | 8.7 | 6.9 |
| Hgb (12-16) | 9.3 | 9.3 | 9.6 | 11.1 | 11.0 |
| Hematocrit (36-46) | 31 | 30.9 | 31.8 | 36.3 | 36.4 |
| Platelet (140-400) | 180 | 199 | 218 | 192 | 173 |
Week 1 (10/27-11/2)
- 10/29: I had an opportunity to do a joint appointment with Dr. Chau (immunology) & Dr. Carpenter (bone marrow transplanter) at Seattle Children’s which was great to see the two doctors bounce ideas off of one another and discuss various topics. It’s nice because Dr. Carpenter works both at Fred Hutch with adults and Seattle Children’s with the pediatric patients. I started to have a sore throat this morning as well as nausea where I vomited last night. I also started to develop some itching on both my thighs and back. Dr. Chau thinks it’s hives so I’m starting on Zyrtec to see if that helps. Also, we did a respiratory panel for the sore throat and unfortunately, I have rhinovirus/enterovirus. Hopefully the cold will go away on its own because I do not want to be hospitalized again. I did also get my second COVID shot – even though it’s before 6 months, we all thought the benefit was worth the risk given that we’re going into cold/flu season. The good news is that for the first time ever in my life, my platelets and WBC were in the normal range!
- 10/31: I’m continuing to see optometry at Eye Associates Northwest with Dr. Anita Lam. She’s the expert in GVHD of the eyes and Fred Hutch sends all their transplant patients over to her. Since seeing her in September, I’ve continued all the eye drops – this is probably the hardest to keep on top of since I have to do eye drops every 2 hours 6 times a day for Oxervate, 3 times a day for Lotemax, and every 2 hours for Refresh tears. I’m not very good at doing the latter. I’m almost done with the Oxervate as it’s an 8 week treatment, so I’ll follow up with her in early December to see if my retinal nerve regrew.
- 10/31: I also had physical therapy today with Christina at Providence. Every time I am admitted to the hospital, I need a new order for PT so they need to send someone out to do a new assessment. It’s been tough getting PT started since every time I’ve started I’ve been rehospitalized, but I’ll be patient. At this point, I’ve seen the entire PT staff at Providence Home Health – not something I want to be known for!
- 11/1: Because of the two hospitalizations that I had in October, the team put in a referral for occupational therapy with Providence. Occupational therapy and physical therapy are intertwined, and both OT and PT are a form of therapy for those recuperating from physical or mental illness. OT, however, focuses on rehabilitation through the performance of activities required in daily life. Mackenzie came to assess my needs, and while I do still need help with cooking, cleaning, and grocery shopping, we decided that I could just do PT at this time and work on my endurance slowly. It was a relief that I didn’t need to add on another weekly appointment.
Week 2 (11/3-11/9)
- 11/5: I’m back with my normal PT, Ryan. We worked on balance and endurance today. He says I’m doing everything that I need to do, but that I just need to give myself time so I can build up my endurance.
- 11/6: I had my weekly visit with Dr. Chau. Since last week, my rhinovirus/enterovirus morphed from a mild cold to much more significant nausea with vomiting this morning and loose stool over the last few days. I’m taking Zofran and Reglan, but I’m not sure it’s helping and my stomach sounds are very vocal today. Because of my poor appetite, I’ve also lost about 5 pounds which is not great in such a short period of time. I’m also still pretty itchy all over my body.
- 11/7: I had my appointment with the long term follow up team (Kate, the NP, and Dr. Carpenter) at Fred Hutch today. After hearing about my intermittent nausea/vomiting/loose stools/rash, they think that I’ve likely developed some late acute GVHD of the GI tract and skin that was likely triggered by the C. diff infection and rhinovirus/enterovirus. We didn’t want to repeat a GI biopsy at this time since I had just gotten an endoscopy a week ago. As such, we decided to escalate my tacrolimus dose to 1 mg BID while still on posaconazole and target 5-8 ng/mL, add budesonide 3 mg twice daily, and beclomethasone 1 mg 4 times daily. We’ll plan to re-evaluate in a month and see if there is improvement. If there is no improvement in the next week, they will recommend that I got an endoscopy then. I did also get my second high dose flu shot today and repeated a pulmonary function test that I will discuss with the Fred Hutch pulmonologist tomorrow.
- 11/8: I saw a new pulmonologist today, Dr. Cheng, at Fred Hutch. She specializes in patients who have gotten a bone marrow transplant and she’ll plan to work with my normal pulmonologist who I love. My pulmonary function test from yesterday was about 10% worse than the test I had done at the end of August. It’s likely that it’s due to rhinovirus but since the chemotherapy that I received could also cause lung issues, they are planning to do another chest CT/pulmonary function test in 6 weeks.
Week 3 (11/10-11/16)
- 11/13: I saw Dr. Chau for my weekly follow up. I told her I was feeling better now that we’ve started steroids to address my gut GVHD. I’m having less nausea, I have had no vomiting for a week so I’d consider that a big win!
- 11/14: Dr. Chau wanted me to get Pemgarda, an IV infusion for immunocompromised patients that protects against COVID. This infusion is done at the Fred Hutch infusion center and the actual infusion is only about 30 minutes to an hour but I was there for almost 5 hours because I had a slight reaction with a massive headache and back pain. I was able to get Benadryl when it happened and I was pretty wiped out for the rest of the day so I ended up lying on the couch for the rest of the day when I got home.
- 11/15: I saw a social worker at Fred Hutch to see if there were support groups for transplant patients. I was connected with Cancer Lifeline and Cancer Pathways so I’ll try to check those out and see if I can do some sort of Zoom situation since I’m still not seeing lots of people.
- I spent the rest of this week doing a lot of housekeeping – scheduling my CT/PFT/pulmonology follow up at Fred Hutch, seeing social work.
Week 4 (11/17-11/23) – Bomb Cyclone
Gordon was supposed to visit this week by driving up with a Mazda that my cousin is getting rid of (I had to return my company car back in September when I got back), but unfortunately the bomb cyclone happened this week, we lost power, and I-5 was closed from California to Oregon. I’ll have to wait until December to get it but since I’m not doing much, it’s no big deal.
- 11/18: I had my 6-month follow up visit with the NIH doctors today. I was supposed to go out to Maryland to do this, but because I had such a chaotic October, we decided that they could just use all the records from my time here in Seattle. The NIH doctors are happy with my progress and they are excited to see my progress at the 1-year mark.
- 11/19: Dr. Chau did increase my IVIG dose since my trough IGG is still a little lower than what she wants for my goal but I do think that as my body starts to make its own IGG, I will be able to wean off. We’re being a lot more conservative given my history, that it’s cold and flu season, and getting IVIG won’t hurt me if I continue it for a few more months. Fingers crossed my numbers will continue to go up. The downside is that IVIG takes almost the whole day for me but I am choosing to see it as a day of rest!
- 11/20: Dr. Chau’s weekly visit went well. My numbers are holding steady which is good!
- 11/22: I saw Dr. Hujoel, my GI doctor, today. We decided that I would slowly taper off of my proton pump inhibitor since I’ve almost been on it for 8 weeks. Hopefully the gastritis that I had in early October has gone away. Since I am feeling better, that is a good sign. We came up with a plan to wean off the beclomethasone and budesonide for the GVHD but it’ll be a SLOW taper.
Week 5 (11/24-11/30)
- 11/24 – We celebrated Ms. Maple’s 4th birthday today! I can confirm that she is still crazy but honestly, it’s kept me sane in the last few years of my life.
- 11/27 – Dr. Chau is happy with my progress and we’re going to start tapering the beclomethasone next week! Let’s hope that my GVHD doesn’t come back when I start tapering. We also talked about when my mom could potentially go back home. My mom is still helping me A LOT – doing my grocery shopping, cooking, and cleaning – which is so appreciated. I do, however, yearn for the day where I can be independent. I know there is a lot of anxiety on everyone’s minds, but Dr. Chau encouraged my mom to take a vacation somewhere so I booked a trip for my mom and a friend to go to Hawaii in February for 5 days. I think this will be a good first step to show that I can survive for 5 days on my own and my mom can perhaps feel less anxiety in going back to California a few months later. If things are going the way they have been the last few weeks, I am hopeful that I’ll be a lot more independent by February!
- 11/28 – SO much to be thankful for this Thanksgiving! My mom and I started the day with a brisk walk. Our neighborhood had a Turkey Trot but we decided to do our own shorter version so I could be distanced from other people. We also played in our newly fenced yard with Maple – she refuses to play by herself and will whine at the door until we come out and join her. I spent the rest of the day cooking and preparing. Beth came over in the afternoon and we went on a walk to the beach nearby – such a sunny and beautiful day. Beth and I have had very “eventful” Thanksgivings the last three years so our hope this upcoming one is that nothing traumatic happens to any of us in 2025! I think that’s a good goal to look forward to :).
- 11/29 – Today is officially 6 months!! I am relishing the last two weeks of feeling good … maybe even like a normal person?!?! (Don’t want to jinx myself). I know I’m hyped up on steroids now but I’m REALLY hopeful that as we start tapering slowly, I’ll continue to feel good.
Reflections
November has been so wonderful! My GVHD is being managed and I am feeling so much better. I’m able to go on walks; I’m able to eat; and I’m starting to be able to do my basic activities of daily living (i.e. laundry and cooking).
- I’m thankful for my mom who has been in Seattle with me since Thanksgiving 2023 when I couldn’t make it down to California because I was feeling so sick and wasn’t eating. I mean she’s really been here my whole life but this year has been … a lot to say the least.
- I’m thankful for my brother Gordon who donated his bone marrow to me so I could even make it this far in life. I’m thankful for being on calls or in person on all my doctor’s appointments, for keeping me sane when my parents were treating me like a toddler, for catering to all my needs, for being my social media manager.
- I’m thankful for my dad who stayed with me for 10 long months to help.
- I’m thankful for all of my doctors who have kept me alive until now. I’m thankful for Dr. Chau for referring me to the NIH, for getting me healthy enough to make it to transplant, for being my biggest advocate, for watching over me weekly now, for always stepping up when I need help. The younger sister that she never asked for (lol).
- I’m thankful for Dr. Arnold, Erin, Christine, Tonya, and all the nurses on the BMT floor at the NIH for coordinating everything and for keeping me alive in the first 3 months of transplant.
- I’m thankful for Neesha, Forrest, Neville, Coco, & Brady for keeping Maple company for the 5 months I was gone, for grabbing Maple every time I went back to the hospital, for letting me recuperate without having to worry about how she was doing. She loves you all.
- I’m thankful for Beth for grabbing my mail, mailing stuff to us we forgot, for all the many other random errands, and for ALL the conversations over FaceTime.
- I’m thankful for all my neighbors who watched over my house, mowed my lawn, cleaned up my yard, let contractors in, etc. while I was gone.
- I’m thankful for friends for checking in on me all the time, for keeping my spirits up, for sending random memes to make me laugh, for all the prayers – Joscelyn, Stephanie S, Martina, Lisa, Lupe, Liz P, Steph H, Jessica, Alex, Jack, Francie, Cindy, Ami, Danielle, Katie, Liz B, Alisa, Siamac, Amy, Robin, Dan, Jen A, Jean, Madhu, and so many more.
- I’m thankful for Jessica & Miriam for convincing and then setting up GoFundMe and for all the people who donated to alleviate a lot of stress about work/finances.
There is so much to be thankful for this year, and I feel so lucky to have made it this far!