No Place Like Home

We have had many wonderful nurses at Providence Portland Medical Center. During our first round, one nurse, in particular, was especially dear to us. That's the only time we've had her. Friday morning, to our delight, Berkeley was our nurse, so that made staying the extra night worthwhile. Mark had no other neurotoxicity episodes--not even those crazy vivid dreams, so we were able to leave the hospital by 9 am Friday morning. Yahoo! 

Mark doesn't sleep very well when he first gets home. One issue is that he is coming off of high doses of hydrocortisone. He's learned that his brain stays too active when his cortisol levels are high, and he can't stop thinking about food. He knew it was high when he started meal planning during the middle of the night. Another problem is that he starts coughing every time he is almost asleep, which wakes him up. Last night he slept from midnight to 3:30, so hopefully, he can nap today. His body is weak, tires quickly, and requires pain meds for sore muscles. Compared to the way he felt during the treatments, that's nothing, so he is happy! He added, "Happy to be here on earth, with my dear Ane, and happy to have such wonderful family and friends like you!!"

Round 4 - Days 3&4 and DONE!

 With two infusions on the first two days, we thought there would be a third, but Mark did not recover so well from the second one. His vitals were actually quite good, and he never needed Neo to control his blood pressure. But...he felt miserable with nausea, muscle pains, itching, and overall weakness. This morning the team came in and decided that he had had enough for this round. One infusion has been dropped with each successive round. 

During the day, Thursday, he perked up considerably. He ate a bit of breakfast and most of his lunch. The nurse had him sit in a chair for about an hour and walk two laps around the floor. He did well, so we are being discharged now. The nurse is currently taking out his internal jugular central line (IJ), and he has to lie still for half an hour. We'll be ready just in time for rush-hour traffic, but that's nothing like going home in an ice storm! 

In six weeks, Mark will have a PET scan to see if the tumor has shrunk or, at least, not grown. Round 5 will be a week or so later, and the final round will be another two or three weeks later. His Interleukin-2 treatments will be completed by mid to late June.  So...almost six months to get through all of it. 

Also, he can't have a Covid-19 vaccine until after the PET scan as the vaccine has been known to enlarge lymph nodes, so that could create a false outcome on the scan. We don't want that. Then, it just depends on when the next two rounds of IL-2 will be scheduled. He may have to wait until he has finished all treatments. That just means we will continue to be extra careful for a little longer. 

We're excited to be going home! 

UPDATE: While Mark was resting after the IJ was removed,  he closed his eyes and saw cool videos playing on a TV on the ceiling. He was amazed at how clear it was, so he opened his eyes to see if it was real. Of course, it wasn't. The nurse was here at the time he was telling me how authentic it looked. She left and came back a few minutes later after talking to Dr. Taylor. That is a sign of late-onset neurotoxicity, so they want to monitor him for another night. Therefore, we aren't going home just yet. He may have some fascinating dreams tonight! 😄

Round 4 - Days 1&2

 After the last post, Mark's itching worsened, his joints and muscles ached more, and his energy level dropped. Resting several times a day kept him going, and he always did his best to be in good spirits. 

Yesterday we arrived at 7 am and went through the same procedures with the 3 pm infusion. Around 4 pm, he got the chills, but warm blankets were enough. By 6 pm, he felt achy with flu-like symptoms but managed to get through the night without a significant drop in blood pressure. 

This morning he was well enough for the 2nd infusion. An hour later, he needed Demerol to control the rigors. Zofran and Compazine took the edge off, but the nausea never went away. In the afternoon, he got extremely restless. He was miserable but couldn't sleep. Ativan helped him relax enough to get an hour nap. His blood pressure dropped to 84, so three boluses were given, which raised it into normal range; thus, no Neo was needed. It's hard to describe how awful he feels. Poor guy. He eats absolutely nothing and only takes small sips of water, which often make him retch. He can't do anything but toss and turn and try to sleep. This is definitely no picnic! He's getting Reglan now to see if it will help with the nausea and allow him to rest.

I wish I could do more to help him feel better. We appreciate medications, as well as competent and kind nurses and doctors. Tender mercies have come as we've witnessed how a simple prayer can calm him when nothing else can. Sometimes, we have to endure hard things, but we do not doubt the reality of a loving Savior who is always near if we seek him.