Field Note 01: Days –6 to –4

Today marks the start of the “Field Notes” series. Essentially, my attempt to document what this process actually looks like from the inside.

I’ll admit, I may have overestimated my ability to keep a perfectly consistent posting schedule. I had meant to post this earlier this week around day -2 or -1, but as I write this, it’s day +1, and I’m more tired than I’ve ever been.

Still, I wanted to kick things off with a recap of my first couple of days here. This one will naturally be shorter than future entries since it only covers three days, not a full week.

Let’s dive in.

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

Friday, August 8th | Day -6

Medical

This morning started with a COVID test and yet another blood draw. The last one from my arm for the foreseeable future. After drawing labs, the team left the IV in place so the central line team could use it to administer medication during the procedure.

Waiting to start the process of getting my central line in was more stressful than the actual placing of the line. The placement took about an hour, though there was some prep beforehand. They cleaned the area thoroughly and went over the standard disclosure about risks and such. The same one, I’m sure, they give every patient.

When it was my turn, I was wheeled into the procedure room, and the team of nurses immediately set to work making me as comfortable as possible. Warm blankets, music of my choosing, and friendly conversation did the trick. They managed to calm nearly all my nerves, and I felt in good hands the entire time.

As far as medications go, they used lidocaine to numb the neck and chest area, and fentanyl for light sedation through a face mask. I’d also taken an Ativan in the prep room, which had kicked in by the time I was wheeled over. I was awake the whole time, though they mentioned this can vary from patient to patient when “conscious sedation” is used.

After the line was successfully placed, I was admitted to my room, where the rest of the evening was spent settling in. With dinner, I took my first doses of ursodiol and an antibiotic before calling it a day.

Physical

After my morning blood draw, I received my first saline flush through the IV. I felt a wave of nausea shortly afterward, but it passed relatively quickly.

A couple of hours after the central line procedure, once the lidocaine wore off, the area where it was placed became quite sore. I didn’t end up taking any additional pain medication, though it was available if I needed it.

Mental + Emotional

I’m really happy with how today went. Getting through the central line placement, and actually enjoying the company of the team during the procedure, was a huge confidence boost.

Unpacking and settling in helped, too. It gave me a clearer picture of what my day-to-day will look like for the next month or so. We’ll be taking things one day at a time, and today set a strong foundation for what lies ahead.

Exercise

N/A

Food + Nutrition

Breakfast: Chicken & rice before I left in the morning, but my cutoff time for food was 6AM for my ~12-2PM central line procedure. Not ideal.

Lunch: Turkey sandwich and diced peaches (post-procedure).

Dinner: Chicken & penne. Simple.

Note: No stomach issues yet.

Media

N/A

Saturday, August 9th | Day -5

Medical

Today was my first full day as a patient here. In the morning, I was introduced to the pill rotation I’ll be taking for the next few mornings: a multivitamin, folic acid, an antibiotic, ursodiol, and an anti-seizure pill.

That was followed by a shot in my stomach (they let you choose any area with a bit of fat) for blood clot prevention. Before my first bag of chemo started at noon, I was also given anti-nausea medication through my central line. So far, a lot of the medicine I’ve received has been preventative, which I definitely appreciate.

My central line has two ports for receiving medication. When the initial chemo started (busulfan), it went through one port while fluids ran through the other to keep me hydrated. That will be a constant for at least the first couple of days of treatment.

After the busulfan was done, I received a thirty minute drip of fludarabine, aka more chemo. The next busulfan drip started at 6PM. I am on a 6 hour schedule with that one, so I will be receiving busulfan every 6 hours for the next few days and fludarabine just once a day until it is time for me to receive my transplant.

Physical

Yesterday was taxing both emotionally and physically, and I think my fatigue has more to do with that than with any of the treatment so far. The second bag of busulfan today went better than the first, likely because my body is beginning to adjust.

Sleep-wise, I’ll probably need a few days to settle into the rhythm here, but I’m hopeful it won’t be too bad once I do.

The area where my central line was placed is healing well. There’s some slight bruising, but nothing out of the ordinary.

Mental + Emotional

I’m still feeling positive about the direction of things so far. I met with one of the transplant doctors and their PA during morning rounds, and we reviewed the plan for the next few days. It was a really reassuring conversation that helped put my mind at ease about what to expect in the days ahead. The team here is fantastic and genuinely caring.

Exercise

N/A

How my central line looks without the gauze pad — Day -4

Food + Nutrition

Breakfast: Oatmeal, banana, fruit cup, yogurt, soy milk, & coffee

Lunch: Chicken breast, green beans, brown rice, & chocolate milk

Dinner: Chicken noodle soup, dark chocolate KIND bar, & some fig newtons.

Note: Everything is settling well still. No stomach issues yet.

Media

I finished reading Dopamine Nation by Anna Lembke today. It’s a pretty good read if you’re interested in understanding what motivates us and how dopamine, and our constant pursuit of pleasure, can sometimes lead us down negative paths.

Sunday, August 10th | Day -4

Medical

The 12 a.m. and 6 a.m. doses of busulfan both went well this morning. Once I started my day, I got another shot for blood clot prevention and took my usual pill medley: multivitamin, folic acid, antibiotic, ursodiol, and an anti-seizure pill. I also met with the transplant team during rounds, and they gave me the all clear. Apparently, my lungs are “wildly clear.”

Before this afternoon’s chemo, I received potassium and magnesium through my central line to prepare for the transplant next week. Since the anti-rejection meds can be tough on the body, they want to make sure mine is as ready as possible before starting those.

When I started my busulfan dose around noon, I noticed a slight droopiness in my left eye. This has happened before when I’m overly anxious or nervous. While I feel like those emotions are under control right now, I still made sure to mention it to my care team. At this point, there is no concern that it’s anything more than a mild exaggeration of something pre-existing. I’m not too worried myself.

After the noon dose, I received more fludarabine around 3 p.m., followed by a bit of a break. So far, breaks have been few and far between, so when they come, they are much appreciated. Luckily, the 6 p.m. dose also went well, and I was able to get some sleep after finishing up around 9:30.

Physical

I’m still feeling well. I think it will take some time before the chemo really starts to affect me, but for now, I’m holding up fine. The droopy eye issue did not return in any meaningful way after my noon dose, and I’ll be sure to mention it if it happens again. Everything else is good.

Mental + Emotional

I’m proud of how I’ve been handling this so far. I love the team caring for me, my family has been here, and I know this situation could be worse. I understand it will get tougher the longer I’m here, but I’m grateful for the positive start we’ve had.

Chemo schedule for first couple of days — Day -4

Exercise

No exercise today, but I might be getting an exercise bike in my room tomorrow or Tuesday. For now, my bathroom breaks and short walks down the hallway will have to do.

Food + Nutrition

Breakfast: Plain bagel, strawberry yogurt, peach slices, & coffee

Lunch: Pasta w/ vegetarian bolognese sauce & coffee (odd combo I know)

Dinner: Chicken breast, sliced carrots, garlic herb-roasted potatoes

Snacks: Ritz crackers & two dark chocolate Kind bars.

Note: Still very few if any issues with eating and staying hydrated.

Media

N/A

Closing Thoughts

I hope you enjoyed this first entry. The next Field Note will cover days -3 through +4, but I’m not making any promises on when it will appear.

Once I feel it’s in a good place, and I’ve had the energy to give it a proper edit, you’ll see it.

As always, I’d love to hear from you if you have any questions, comments, or thoughts to share.

Talk soon,

– Ethan

Resources

Links directly referenced in this post:

Long Way From Home