Long Way From Home

Welcome back! After some thought, I’ve decided this will be the last of the “weekly update” style field notes. The updates aren’t ending, but now that I’m through the initial 30 days, I want to shift to a more sustainable model.

Going forward, I’ll be posting updates around key milestones like Day +50, Day +75, and so on. The structure of the posts will be similar, but with more time between updates, I’ll be able to dive deeper into the more important details of my recovery.

My hope is that these posts continue to offer value to anyone going through something similar. At this stage, spacing the updates out feels like the best way to do that.

With that out of the way, let’s dive in!

Disclaimer: Every stem cell transplant experience is different. This is mine.

Monday, September 8th | Day +25

Medical

N/A

Physical

Feeling well today. Still dealing with the dry eyes and dry nose, but I managed to get in more walking today and overall just felt good. The fatigue is ever-present, but I’m working through it.

Mental + Emotional

To break up the monotony of hotel life, we decided to visit the MFA today. My mom and I both love a good museum trip, and we went during an off-peak hour to be as safe as possible.

We had a great time and managed to see a good portion of the museum before my legs started to protest. I can’t overstate how refreshing it was to do something that felt “normal.”

Exercise

Between the museum this morning and our usual evening walk, I covered a solid amount of ground today. Feeling good about that.

Step Count: 6.4k

Nutrition

Breakfast: Peanut Butter Crackers & Banana

Lunch: Clementines

Dinner: Spanish Chicken w/ Noodles

Snacks: Chips & Salsa

Weight: N/A

Note: Still have a very limited sense of taste. Spanish chicken is one of my favorite meals that my Mom makes and I was unfortunately not able to taste most of it which was a bit of a bummer.

Media

Tuesday, September 9th | Day +26

Medical

N/A

Physical

My legs were a bit fatigued after yesterday’s bigger day, but I was able to rebound and felt pretty decent overall. It’s encouraging to notice the progress I’ve already made and to know it should only keep improving.

Mental + Emotional

Just okay today. The days are moving along steadily enough. Before all this began, I hoped boredom would end up being my biggest post-transplant issue and it looks like I’m getting exactly what I asked for!

Exercise

We extended our evening walk route a bit, and I held up well. That ended up being the only real walking I did today, but I’ll take it.

Step Count: 3.2k

Nutrition

Breakfast: Banana & Clementines

Lunch: Rice Cake w/ Peanut Butter

Dinner: Mac-N-Cheese

Snacks: N/A

Weight: N/A

Note: Homemade mac and cheese for dinner tonight. Unfortunately, I learned that a few different cheeses can now be added to the list of things I can hardly taste at this stage of recovery.

Media

Wednesday, September 10th | Day +27

Medical

N/A

Physical

After yesterday’s rest day, I was able to be more active today, and it felt good. My dry eyes and dry nose also seem to be trending in the right direction.

Mental + Emotional

I was having an okay day mentally until we met a dog named Bernie in the park during our evening walk. He must have known I hadn’t seen my own dog in a month or so and needed some love. Easily the highlight of the day, maybe even of the entire post-hospital period so far. What a good boy.

Earlier in the day, we had gone to the Isabella Stewart Gardner Museum. It was a bit busier than the MFA, so we didn’t see everything, but it was definitely worth the short trip.

Exercise

Did another longer loop this evening to get more steps in. Ended the day with a total I’m really happy about.

Step Count: 7.3k

Nutrition

Breakfast: Banana & Clementines

Lunch: Rice Cake w/ Peanut Butter

Dinner: Rice Cake w/ Peanut Butter & Chips

Snacks: Clementines

Weight: N/A

Note: Appetite was lacking today, but was still able to get some food down.

Media

Thursday, September 11th | Day +28

Medical

Had my weekly clinic check-in today, and it didn’t go quite as I expected. My counts were mixed: platelets climbed to their highest level since last April, red blood cells held steady, and white blood cells dropped sharply.

I later learned from my doctor that the drop was simply because I’m no longer getting the booster shots I received in the hospital. It made perfect sense once he explained it, but before that conversation I was in my head and pretty worried about the results. The key takeaway was an important one: counts can and likely will fluctuate throughout recovery. It won’t always be steady forward progress, and that’s completely normal and not something to panic over.

Even after seeing my lackluster counts for the week, my doctor still felt confident enough to move ahead with removing my central line. The process was straightforward, much simpler than when it was put in. The only real discomfort came from the quick sting of the numbing shot and the pressure applied after removal. Overall, very manageable.

Physical

Still feeling well. Nothing really of note.

Mental + Emotional

I was a bit rattled after seeing my counts this morning, but it reinforced the lesson that there will be fluctuations and I don’t need to panic each time they happen.

On top of that, we moved into the Hope Lodge this afternoon. It added a little stress to the day, but I am sure we will get more settled here in the coming days.

Exercise

We didn’t get out for a formal walk today, but still managed a solid number of steps overall.

Step Count: 5.4k

Nutrition

Breakfast: Banana & Fruit Snacks

Lunch: Spanish Rice

Dinner: Everything Bagel

Snacks: Clementines

Weight: 133

Note: Learning very quickly that clinic days end up also not being the best nutrition days.

Media

Friday, September 12th | Day +29

Medical

N/A

Physical

Slight headache today that is really only noticeable when I blow my nose. Not sure what to make of that. I’ve also had a faint shake in both hands that showed up today. It’s a known side effect of one of my medications, so I’m not too worried, but still worth noting.

Mental + Emotional

Had a pretty good day today, which I think I needed after the stress of yesterday. I’m still a bit uneasy about the count fluctuations, but I feel more positive after how my doctor responded. If they aren’t worried, maybe I don’t need to be either.

Exercise

Lots of walking today.

Step Count: 8.9k

Nutrition

Breakfast: Everything Bagel, Clementine, & Banana

Lunch: Rice Cake w/ Peanut Butter & Chips

Dinner: Chicken Tortellini Soup

Snacks: Goldfish
Weight: N/A

Note: I feel good about the amount I was able to eat today. More protein than yesterday, that’s for sure.

Media

Saturday, September 13th | Day +30

Medical

N/A

Physical

Feeling yesterday’s walk quite a bit today, and my hands are still a little shaky, but I’m not too stressed about either.

Mental + Emotional

Today felt like a step in the right direction mentally. Still some stress, but I know that’s just part of the process, no real way to avoid it completely.

Exercise

Even on tired legs, we managed to get in a bigger walking loop this evening.

Step Count: 7.6k

Nutrition

Breakfast: Everything Bagel, Clementine, & Banana

Lunch: Mozzarella Sticks

Dinner: Chicken Tortellini Soup

Snacks: Clementines, Chips, Ice Cream

Weight: N/A

Note: Healthy? Maybe not. But with all the walking I’ve been doing, I’m trying to focus on getting enough calories each day to keep my weight from dropping further.

Media

Sunday, September 14th | Day +31 

Medical

N/A

Physical

Feeling well overall, with a few minor issues. My hands are still a bit shaky, and the blood in my urine is stubbornly sticking around.

Mental + Emotional

My mom had been with me for the past two weeks, and today my dad arrived to take over for the next two. Saying goodbye was tough, but I believe it was easier on everyone knowing that I am doing quite well at this stage of my recovery.

Exercise

Definitely a more active day.

Step Count: 8.3k 

Nutrition

Breakfast: English Muffin, Clementine, & Banana

Lunch: N/A

Dinner: Breaded Chicken, Corn, & Pasta

Snacks: Chips & Salsa

Weight: N/A

Note: Dinner tonight went down well. Happy with my appetite level today.

Media

Closing Thoughts

As I mentioned in the intro, I’ll be switching to a slightly more sustainable update model moving forward. Luckily, I’ve been playing catch-up with these field notes (currently day +40 as I write), so the day +50 update will be coming shortly.

Thank you for taking the time to read through, and as always…

Talk Soon,

– Ethan