My Delayed Tolerance Journey

I have embedded the last copy of the recipient consent form as a PDF above. WordPress has convienently included a viewer so readers can play along at home. I am going to start on page 5 of 32 and give my side on how each day was.

Visit 1 and 2

• This was pretty easy. I spoke with the radiation oncology doctor briefly and his technicians put me in a CT scanner to map out the areas they want to irridiate. I did get a plastic mask, and nine tiny tattoo dots, which I did not know about beforehand.

Day 0 (August 4th)

• Blood test at 6:00 am
• First rATG infusion and meeting with nephrologist at 8:00 am
• Bad reaction to 250 mg of prednisone so we had to pause the infusion several times
• Due to breaks, infusion not over until 5:00 pm
• Rush downstairs to radiation oncology to undergo first TLI treatment
• Finish up at around 6:00 pm

Here is the website to the Varian radiation machine.

At this point, I rented a room at The Tiverton close to campus. This is UCLA Health’s hotel for patients. We planned to stay for two weeks, but after getting a room with loud AC and bad mattress, we only stayed one week to August 8th and drove from Orange to UCLA daily for the second week. The rooms were about $200/night and include free breakfast.

Day 1 (August 5th)

• Blood test at 6:00 am
• rATG infusion at 8:00 am plus meeting with nephrologist while on the chair
• Lower prednisone dose at 200 mg
• Infusion goes faster and I was done at 3:00 pm
• Meet with radiation oncologist for review and everything is great
• Undergo TLI imaging; machine not scary anymore
• Got back to The Tiverton at 4:30 pm, slept, and had In-n-Out for dinner

Day 2 (August 6th)

• Basically same as Day 1 except no meeting with radiation oncologist
• I do not remember receiving any x-rays, but they could have taken it with the huge radiation machine without me noticing

Day 3 (August 7th)

• Same as Day 2
• Almost all my lab results come back within expectations

Day 4 (August 8th)

• Same as Day 3 with prednisone lowered to 80 mg
• Day 2 and 3 prednisone were 160 mg and 120 mg respectively
• ALL DONE with rATG infusions with five total
• Also going home for the weekend!

Day 5 (August 9th)

• First day off from treatment over the weekend
• Shit hits the fan at around 2:00 am when I feel massive nausea and start vomiting
• I had lunch and dinner plans with my family but sat at home throwing up
• And did I mention massive pain the the upper abdomen?

Day 6 (August 10th)

• I woke up early enough but did not feel like going to church to throw up
• We also discover that my left arm, the one with the PICC-line, looks a bit swollen
• We stick with our decision to drive to UCLA daily

Day 7 (August 11th)

• Half-way there!
• We wake up at 4:00 am to get to UCLA by 5:45 am for labs
• Meet with nephrologist at 8:00 am; inform him that I am dying (feels like)
• Nephrologist orders 1000 mL of 0.9% saline for me
• Following IV infusion, I continue my TLI treatments in basement level 2
• Drive home around noon from UCLA; roads in Los Angeles suck ass

Day 8 (August 12th)

• Got up at 4:00 am again
• Meet with Bone Marrow Transplant (BMT) doctor; he is concerned about left arm
• BMT doctor orders ultrasound for left arm to look for clots due to PICC-line; after hour of negotiating, it is scheduled for 9:15 pm on Thursday night
• Doctors decide the nausea is a side effect of the TLI radiation; I go to the next treatment regardless

Day 9 (August 13th)

• 🎉 Happy birthday to me!
• Of course the nausea gets worse; I did not have any drink or food or sleep since Monday
• Also got 1000 mL saline infusion after labs at 6:00 am
• On the way home after labs and TLI treatment, I call Tiverton to reserve two nights; first one for same-day, and another night so we do not need to drive home after night ultrasound
• Every nurse wishes me Happy Birthday while I feel like death

Day 10 (August 14th)

• Staying at The Tiverton is not much better than driving; why does every room have super loud AC?
• Late-night ultrasound in Santa Monica is spooky, and parking was still $37 for 30+ minutes
• Preliminary ultrasound results suggest a clot caused by the PICC-line, but I am only to use it once more for the actual transplant, so we leave it alone
• Ultrasound doctor and technician tried to convince me to visit ER; not at 10:00 pm on a Thursday… fuck that

Day 11 (August 15th)

• 💉 Today is the big day!
• Even with worsening nausea, I have been undergoing TLI treatment on Days 9, 10, and 11 (today)
• I get another 1000 mL of saline infusion, followed by the tenth and final TLI treatment
• Meet with BMT doctor and gets a hospital bed to receive my sister’s stem cell donation
• I fell asleep and it was all done!

Day 12-15 (August 16th to 19th)

• Over the weekend, I still have massive nausea attacks and pain
• None of the drugs given to me for nausea really work at all
• I am now weaned off prednisone, but doctors added Myfortic plus several anti-viral medications
• Still getting labs done early in the morning with saline infusion and doctor meetings Monday and Tuesday

Day 16-21 (August 20th to 25th)

• Drove back to UCLA on Day 17 (Thursday) for final meeting with radiation oncologist who is convinced my nausea is due to his machine
• I rejected a saline infusion since the PICC-line was removed on Day 15 and I did not want to drip 1000 mL through an IV port
• Nausea is holding, which means still no drink/food/sleep

Day 22 (August 26th)

• Today is Day 22!

I feel a bit better this morning. I have been able to hold down sweet drinks since yesterday, but not take full gulps. Also still no food. I think I found my new favorite drinks: Korean taro milk, chrysanthemum tea, some peach juice, and 冬瓜茶 (winter gourd tea).