Field note #5. Alternative title: “life out of a hotel room.” Not quite as glamorous as it sounds, but we’re right down the road from the hospital and will be here until a spot opens up at the Hope Lodge.
Jokes aside, it was a good week, full of early recovery milestones and encouraging news from my first clinic visit since discharge.
Let’s jump in.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Monday, September 1st | Day +18
Medical
First line flush at home went smoothly enough. I’m sure the process will only get easier with practice, after all, I watched the nurses do it countless times in the hospital. Even wrapping the line for a shower went off without a hitch.
Physical
My throat is still giving me a fair amount of grief, but I do think we’re headed in the right direction. It’ll probably be a while before my stomach is ready for two or three meals a day anyway.
Mental + Emotional
Since my discharge yesterday was a little rushed, not all of my immediate family could be there. Everyone stopped by the hotel this afternoon instead, which was really nice. They all agreed it was good to see me anywhere other than a hospital bed. They said I look better, and I’m choosing to take them at their word.
Exercise
Made it a little farther on tonight’s walk than last night’s. Still nothing to write home about, but progress is progress.
Step Count: 1.5k
Nutrition
Breakfast: Banana x2 & Scrambled Eggs w/ Mushroom, Spinach, and Cherry Tomatoes
Lunch: N/A
Dinner: Spanish Rice & Chicken
Snacks: Ice Cream Cup, Banana, & Pineapple
Weight: N/A
Note: Going to be patient when it comes to upping my food intake. Appetite still isn’t great.
Media
Tuesday, September 2nd | Day +19
Medical
Staying on top of my medication is a huge part of being discharged, and I think we figured out a good system today that will help me stay on track.
Physical
Feeling well today. I noticed a shift in my energy after dinner last night, and it carried through into today. My energy level stayed strong all day.
Mental + Emotional
Today did wonders for my mental health. With the energy boost I had, I feel like I’ll be able to look back on this as the day that really kickstarted my recovery outside the hospital.
Exercise
On Sunday, I mapped out a smaller walking loop that I thought would take some time to work up to. This evening, we completed it.
Step Count: 3.3k
Nutrition
Breakfast: Banana x2 & Scrambled Eggs w/ Mushroom, Spinach, and Cherry Tomatoes
Lunch: Spanish Rice & Chicken
Dinner: Tortellini w/ Parmesan Cheese
Snacks: Pineapple
Weight: N/A
Note: Full day of eating. Felt like my body handled it well.
Media
Wednesday, September 3rd | Day +20
Medical
N/A
Physical
Definitely paying the price for yesterday’s bigger effort. Feeling the fatigue today. Still, I managed to keep things on track.
Symptom-wise, my throat continues to heal, and the same goes for my rash. A new development has been drier eyes and a drier nose, but nothing I’m overly concerned about right now.
Mental + Emotional
Bit of an off day. I caught myself being hard on myself, comparing how I felt physically yesterday to how I feel today. The truth is, this recovery isn’t going to be a straight line, and I’ll need to get better at giving myself grace on the days that feel like a step back instead of forward.
Exercise
Similar walk to last night’s and ended up with about the same number of steps. Given how I felt physically and mentally today, I’m content with that.
Step Count: 3.3k
Nutrition
Breakfast: Banana x2 & Scrambled Eggs w/ Mushroom, Spinach, and Cherry Tomatoes
Lunch: N/A
Dinner: Chicken Pesto Meatballs, Cous Cous, & Green Beans
Snacks: Pineapple, Ice Cream Cup
Weight: N/A
Note: Decided to take it easier on the food front today. Definitely was the right call.
Media
Thursday, September 4th | Day +21
Medical
Today was my first trip back to the clinic since being discharged. My counts look solid for how early I am in recovery, and my doctor reassured me that I’m right where he’d expect me to be at this stage.
I didn’t need any blood products this time, just some magnesium since my level was a bit low. Overall, a very good first visit back. And the best part? I’ll be getting my central line removed next week. Can’t wait.
Physical
Didn’t love waking up early to make it to my appointments, but we made it work. I’m feeling decent today. There’s still a bit of blood in my urine, which is concerning, and the dry eyes and dry nose seem to be stubbornly sticking around. That said, my doctor isn’t too worried, so I’m doing my best not to be either.
Mental + Emotional
It was great to get some good news today. The not-so-fun parts of this, medications, ailments, fatigue, etc., seem to come with a timetable. My job is to stay patient and work through the plan my team has laid out. It was good to be reminded of that.
Exercise
Tacked on a bit more distance during tonight’s walk.
Step Count: 4.4k
Nutrition
Breakfast: Banana
Lunch: Core Power Protein Drink
Dinner: Pasta w/ Tomato Herb Sauce
Snacks: Pineapple
Weight: 135
Note: Bit of an odd day on the nutrition front with appointments taking up most of the morning and early afternoon. Managed to make it work, though.
Media
Friday, September 5th | Day +22
Medical
N/A
Physical
Feeling a bit more tired today. On the plus side, my eyes and nose seem to be improving. Of course, no progress has come without something else cropping up. My stomach has been acting up for most of the day. Likely just food related.
Mental + Emotional
Still riding the good news from yesterday. Feeling well mentally.
Exercise
Another evening walk.
Step Count: 4.3k
Nutrition
Breakfast: Banana & Clementines
Lunch: Scrambled Eggs w/ Mushroom, Spinach, and Cherry Tomatoes
Dinner: Saltines w/ Peanut Butter
Snacks: Ice Cream Cup
Weight: N/A
Note: Wasn’t feeling hungry today, but still managed to eat a decent amount.
Media
Saturday, September 6th | Day +23
Medical
N/A
Physical
Didn’t do much today with the rainy weather. Honestly, it was nice to have a built-in rest day. Feeling okay overall.
Mental + Emotional
Tried and failed to maintain the “one day at a time” mindset today. Such a long road ahead, and it had me a bit down today.
Exercise
Due to the rain, we couldn’t do our usual evening walk. Therefore, I wandered the halls of the hotel for 10-15 minutes before returning to the room out of boredom.
Step Count: 1.5k
Nutrition
Breakfast: Scrambled Eggs w/ Mushroom, Spinach, and Cherry Tomatoes
Lunch: Mac-N-Cheese
Dinner: Chicken, Cous Cous, & Corn
Snacks: Clementines & Ice Cream Cup
Weight: N/A
Note: Three meals today, but I was not very excited about actually eating any of them.
Media
Sunday, September 7th | Day +24
Medical
N/A
Physical
Slept quite a bit today. Fatigue or just hotel boredom, hard to say. The rain carried over into today too, which made taking it easy feel a little more acceptable. Otherwise, feeling okay.
Mental + Emotional
Still feel like I’m stuck in a bit of a mental lull. Doing my best to work my way out of it.
Exercise
The weather cleared enough for us to resume our regularly scheduled evening walk.
Step Count: 2.8k
Nutrition
Breakfast: Banana & Clementines
Lunch: Peanut Butter Crackers
Dinner: N/A
Snacks: Ice Cream Cup
Weight: N/A
Note: Not hungry or enthusiastic about food today.
Media
Closing Thoughts
Like I mentioned before, recovery won’t be a straight line. Setbacks are bound to happen, but for now I’m grateful for the progress I am making.
One day at a time.
Talk Soon,
– Ethan
Long Way From Home 
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