We’re back with a recap of my first full week here. There were plenty of things I’m proud of, and a few moments I’m less proud of, but overall I’m happy with the progress that was made this week.
Let’s jump in.
Disclaimer: Every stem cell transplant experience is different. This is mine.
Monday, August 11th | Day -3
Medical
This morning started like most have, and like most will, while I’m here: vitals, pill medley, and a blood draw. On top of the usual routine, I was given some Miralax to keep my system moving, since a few of the meds I’m on can be tough on digestion.
My 12pm dose of Busulfan got going a little late, so by the time I finished the Fludarabine afterward, I only had about an hour before the next Busulfan round. Not ideal.
Physical
Symptom-wise, I’m still feeling okay overall, but a few things cropped up today: more heartburn-type burps, a weaker grip strength, and some mild fatigue. All normal enough, just not exactly enjoyable.
Mental + Emotional
It really hit me today just how long this hospital stay will be. I think that’s partly because I started feeling it more physically, but my mindset hasn’t changed. The only way through this is one day at a time. Easier said than done, sure, but still the goal.
Exercise
Today I learned that my tower can actually be unplugged for easier mobility. The machines are chargeable and can run for quite a while without being directly plugged in. A small but welcome discovery.
On top of that, my exercise bike was delivered. It’s currently sitting in the corner, taunting me. I’ll start tomorrow. Probably.
Nutrition
Breakfast: Oatmeal, Yogurt, Banana, & Coffee
Lunch: Chicken Noodle Soup
Dinner: Chicken Noodle Soup
Snacks: Kind Bar, Saltines, Nature’s Bakery Fig Bar
Weight: N/A
Note: I was less enthusiastic about food today. I still made myself eat, but there wasn’t much hunger or enjoyment in the process.
Media
Tuesday, August 12th | Day -2
Medical
The team switched me over to a longer-acting nausea medication today, since the previous one wasn’t doing enough. Thankfully, there are plenty of options here, and making adjustments like this is pretty common.
Today also marked my last full day of chemo before the transplant.
Physical
More nausea today, along with more fatigue. I spent most of the day drifting in and out of catnaps.
Mental + Emotional
I struggled a bit more today than on the previous ones. I’m hoping it’s simply a reflection of how I’m physically feeling, rather than any real crack in my determination to get through this.
Exercise
I managed a light 10 minutes on the exercise bike today. Humbling, to say the least.
Nutrition
Breakfast: Banana, Saltines, & Diced Peaches
Lunch: Protein Frappe
Dinner: Nature’s Bakery Fig Bar x2
Snacks: N/A
Weight: N/A
Note: My appetite, in case it wasn’t clear, was non-existent today.
Media
Wednesday August 13th | Day -1
Medical
I wrapped up the initial, and most demanding, batches of chemotherapy this morning around 10am. The only other notable change today was the addition of more stomach medication. I’ve been dealing with some issues on that front since admission, but the team isn’t too concerned. They also added magnesium to my schedule, delivered through my central line, which should help.
Physical
As you can imagine, I was proud to finish the initial chemo, but it was hard to feel like I’d “won” the day. The fatigue and nausea were heavy. This morning, I was all boot and no rally.
The fatigue has been showing up as heavy eyelids, jumbled thoughts, and a bit of shaking. The shaking is technically a side effect of one of the drugs, but I’m lumping it in with fatigue all the same.
Mental + Emotional
Another tough day. Right now, discharge feels impossibly far away.
Exercise
Managed a short 5–10 minutes on the exercise bike and a bit of hallway wandering.
Nutrition
Breakfast: Saltines & Kind Bar
Lunch: Protein Frappe
Dinner: Saltines
Snacks: N/A
Weight: N/A
Note: No appetite whatsoever today
Media
N/A
Thursday, August 14th | Day 0
Medical
This morning, I was given more magnesium to help with my stomach, though no real progress yet. That concern quickly faded into the background, though, as today was the day of my transplant.
It all began shortly after 4 p.m. Before starting, the team had me complete a quick X-ray to make sure there wasn’t any blockage behind my stomach issues. Once I got the all clear, we moved straight into the transplant process.
One of the hospital chaplains came in and offered a short prayer. As he read it aloud, my doctor, my family, and I all placed a hand on the bag of marrow. It was a really beautiful moment. Having the chaplain there was optional, but regardless of your religious background, I would recommend it. It truly helped.
The process itself wasn’t all that different from what I’ve already experienced since being admitted. They hooked the bag up, and it slowly dripped into my system through the central line. My donor provided a strong sample, so the infusion took about six hours in total.
For the entire process, I was connected to an EKG machine and a blood pressure sensor. Not the most comfortable setup, but in the grand scheme of things, a little discomfort is a small price to pay.
Physical
My nausea still comes and goes, but the fatigue has been steady. Interestingly, during the transplant I felt more energized than I had at any point this week, but that boost didn’t last. By the time the infusion finished a little after 10 p.m., I completely crashed.
Mental + Emotional
Hopeful and grateful, hat’s how I’d sum it up. Not long after the chaplain’s prayer and the start of my transplant, “Long Way From Home” (this blog’s namesake) came on shuffle. We all laughed at the timing. My playlist has hundreds of songs, and somehow that one played right when I needed it most. At that moment, I remember thinking: I’m going to be okay. Music has a way of doing that.
Exercise
Another thrilling 5-10 minutes on the bike.
Nutrition
Breakfast: Yogurt, Diced Peaches, & Saltines
Lunch: Penne & Green Beans
Dinner: Saltines
Snacks: N/A
Weight: 148.3
Note: Slightly more of an appetite today.
Media
Friday, August 15th | Day +1
Medical
Today started in the usual way. Along with the magnesium I’ve been taking, I was also given potassium. The idea is that the chemo coming later this week can be tough on the body in certain areas, so the team is working to get my numbers in the best shape possible beforehand. Preventative rather than reactive.
On morning rounds, the doctor and PA told me that “everything is going according to plan,” which is such a beautiful phrase to hear. I know there will be harder days ahead once my counts drop, but those days should be temporary. In the meantime, one day at a time.
Physical
I woke up feeling a bit out of sorts today, but things improved as the day went on. Thankfully, my stomach issues seem to have eased up, which I’m eternally grateful for. I also spent a good portion of the afternoon just resting which may end up becoming the theme for my afternoons from here on out.
Mental + Emotional
I’m really happy with how today went. Hearing from the team that I’m on the right trajectory was a huge boost, and I’m determined to do everything I can to keep things moving in that direction.
Exercise
Light 15 minutes on the exercise bike.
Nutrition
Breakfast: Saltines
Lunch: Penne & Green Beans
Dinner: Tomato Basil Soup & Saltines
Snacks: N/A
Weight: N/A
Note: Saltines, Pistachios, Almonds, & Animal Crackers
Media
Saturday, August 16th | Day +2
Medical
My cell counts have started to dip now. On top of that, I developed a small skin rash. The team thinks it could be either general irritation or a reaction to one of my meds, so they gave me a gel to use on the affected spots. Outside of that, most of the day was spent catnapping. I was free from the tower for much of the day, like yesterday, which made a big difference.
Physical
Woke up feeling well today, probably the best I’ve felt since finishing the initial rounds of chemo. The fatigue is still very much there, though, so naps remain essential.
Mental + Emotional
Feeling steady mentally. I’m grateful for the chance to rest these past couple of days before gearing up for a small round of chemo tomorrow and Monday.
Exercise
N/A
Nutrition
Breakfast: Saltines
Lunch: Penne w/ Marinara, Green Beans, & Chicken
Dinner: Tomato Soup & Saltines
Snacks: N/A
Weight: N/A
Note: Pistachios, Almonds, & Cheese-Itz
Media
I finished Conversations With Friends by Sally Rooney today. I’ve read Normal People more times than I care to admit, so I came in with high expectations, but this one left me a bit disappointed. To be fair, I read most of it during chemo, which probably colored the experience. Still, I’d call it just an okay read.
Sunday, August 17th | Day +3
Medical
During morning rounds, the team took a quick look at a drug rash that appeared. very recently. They’ve narrowed it down to one or two possible medications as the cause, but since they aren’t overly concerned, I’m not either.
I also developed a light cough today. Nothing major, just a few dry coughs here and there when I take a deep breath. The team thinks it’s likely some inflammation caused by the chemo, which makes sense. My vitals are still looking fine.
Chemo started up again today, though this time it’s only two doses. I received the first at noon and will get the second tomorrow. The drug is called Cytoxan, and it’s more of a “preventative” chemo, meant to help the new cells settle in and do their job.
Physical
When I got up, I felt some general nausea and lightheadedness, but it resolved shortly after sitting up and starting my day.
The chemo came out swinging today. The previous two days of rest may have given me a false sense of security, because I was pretty wiped once the dosage was finished.
Mental + Emotional
Still doing well. The constant reassurance from my care team and my family that I’m on the right path really helps.
Exercise
N/A
Nutrition
Breakfast: Saltines
Lunch: Penne w/ Veggie Bolognese, Green Beans, & a Dinner Roll
Dinner: Penne w/ Veggie Bolognese, Green Beans, & a Dinner Roll
Snacks; N/A
Weight: N/A
Note: Almonds, Pistachios, & Cheese-Itz
Media
Closing Thoughts
As you can see, a lot happened in my first full week. I’ll share the calendar again below to give you a clearer idea of where I am right now.
Between the chemo days, receiving my transplant, and just getting settled, I’m pretty exhausted. That said, every day that passes is one step closer to discharge, and I’m trying to keep that in mind.
Talk Soon,
– Ethan
Long Way From Home 
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