Yesterday afternoon, Tara called with some snags to starting the clinical trial. Mark's bilirubin count was slightly elevated, just barely above the allowed amount for the trial. Since there is Tylenol in the Hydrocodone, she and Dr. Taylor concluded that going off of it for a day might drop the level enough to allow us to move forward. Without it, Mark would need to increase the Hydromorphone (Dilaudid) dosage to control the pain. ALSO, the required tissue from a tumor in his body was at an off-site facility that would take a week to locate and retrieve. Tara was able to schedule a liver biopsy today after the morning MRI. If this worked out, the infusion could begin, as scheduled, on Tuesday, the 7th.
Mark's last dose of Hydrocodone was at 3:00 pm yesterday, so he took a double dose of Dilaudid at 5:00 and 8:00 pm. His Fentanyl patch needed to be changed at 10:00 pm. By midnight, Mark was extremely confused and agitated. He could not think or communicate clearly and was frustrated that he couldn't figure out what was happening. After checking the severe side effects of Dilaudid and Fentanyl, I felt confidant that he had too much of one or both of these narcotics in his system.
Of course, I couldn't sleep in case his breathing became shallow, so at 1:00 am. I decided it was time to call 911. (This wasn't their first time here--they remembered the fall of 2019 when Yervoy attacked his pituitary gland, causing adrenal insufficiency.) This team of four agreed that he likely had too much medication in his system. Fortunately, his vitals were good, so he wasn't in imminent danger. After they left, hiccups started and lasted for 2-3 hours straight, paused for a bit, and started again. He actually slept through some of it--I can't imagine how. I certainly didn't, but I also couldn't leave the room because I didn't know what he might do. I hid all of his medications in case he thought he needed to take more. My other concern was that he would have to be still for the MRI in a few hours, which would be impossible with these constant hiccups. Maybe it wouldn't be a problem, but I was concerned and feeling sick with the lack of sleep. Finally, after some sincere seeking for heaven's help, we both dozed for a while.
By morning, Mark had improved somewhat, although he was extremely nauseous. We headed to the Providence Imaging Center in Tannesborne for the MRI. He had hiccups on the way but never had them while he was there! On our way to Providence Main, they started up again. That was a sweet, tender mercy, as the MRI is essential to the trial. Later in the day, we learned that his brain was clear. What a relief!! A tumor in the brain could also cause confusion.
After getting him through admitting at noon, I had to leave the building due to Covid mandates. The estimated total time for the liver biopsy was 6 hours. I could have gone home but didn't want to be far away if anything happened. Knowing I'd have a long wait, I had put the foam pad, sheets, and pillow in the back of the Y, so I parked, crawled in the back, and slept! Around 2 pm, Mark called. Tara explained that he would not have the liver biopsy. Another blood draw today revealed that his bilirubin count had increased significantly, so now we had another problem. The CT scan showed some possible blockage in the bile duct. His scheduled stent replacement was for September 20, but it has been moved to Friday, the 10th. We are concerned that a week is a long time to wait. The last time he had a blockage, the pain was intense, and we ended up with two emergency room visits. If it's a partial blockage, it may not be a problem.
The good news is that the liver biopsy won't be necessary, as there will be ample time to retrieve the tissue from the offsite facility. It was taken from a tumor in Mark's adrenal gland that was removed in September of 2016.
Of course, this will push back the first clinical trial infusion by at least a week, so the tumors will keep growing.
Mark has been sleeping since we got home around 3:00 pm this afternoon, with no hiccups--YEA!!
I'm reminded of a few of our favorite sayings, "Life is what happens when you're planning to do something else!" and "Blessed are the flexible, for they shall not be bent out of shape." 😄 Somehow, this will all work out.
My heart goes out to both of you, I can’t imagine the amount of pressure and stress you both feel. I appreciate these post so much as they help me know what to pray for, so thankful I can hold you both up to our Father. Stand firm snd know that He is God!
ReplyDeleteThanks Rick, your thoughts and prayers mean the world to us. They continue to make a difference. The pain has subsided in many of the previous hotspots. I think the prayers and good thoughts have helped. I appreciate you and others help in our challenges. Love, Mark
ReplyDelete