Home Sweet Home

Monday, Mark was still full of water weight, so we opted to stay one more day to get IV diuretics. As a result, he lost another 10 pounds. He has more to go, but that will happen with time and as he's up moving around.

Labs this morning were terrific! Bilirubin came down more, and everything else is trending in the right direction. Even platelets were up, so we were given the green light to go home. Yea!! Because his white blood cells have increased to normal levels, we don't have to go back every day for shots. Wow, that's so much better than we had anticipated. 

Mark was in the hospital from October 14th to November 9th -- 26 days! Tears welled up in his eyes when he walked into the family room and saw the beautiful fall colors in the backyard.  

He is still frail and often nauseous but so happy to be home! We're looking forward to a good night's sleep in a comfortable bed, without any interruptions! 

Bald Guy

Friday, Mark's hair started falling out in clumps, so the CNA offered to shave his head. Now, he can join the gang of bald guys! Why is it that the bald guys we know don't look like cancer patients? For almost the ten years that Mark has been a cancer patient, he hasn't looked like one. Just get a little chemo, and now he does! So, do you bald guys get cold heads? His was, but the only available beanie on the floor was bright yellow. When our daughter, Rachel, saw it on her dad, she immediately went shopping for an appropriate beanie! 

Friday and Saturday, Mark was feeling much better, except for the excess 30 lbs. of water weight. He's on Lasix to get some of it out of his system. Fluids have collected around his lungs, so he coughs a lot, but thankfully it's not in his lungs. He says that his legs and feet feel like stumps that are hard to lift. 

The hospital bed hasn't helped his situation, either. Yesterday and this morning, he had excruciating back spasms that were finally controlled with muscle relaxers, pain killers, and prayer. Unfortunately, it seems that as soon as one problem is under control, something else crops up.

Labs this morning showed an impressive rise in white blood cells! That means his immune system can function again. Platelets are still low, but they will follow. Numbers also show increased kidney function. Everything is moving in the right direction except for two labs numbers. Bilirubin went up, but not significantly. There are no current signs of infection, so blockage is likely on the left side of the liver, where a cluster of tumors is present. His alkaline phosphatase increased, as well, which could indicate decreased liver function. The T-cell warriors need to attack those tumors ASAP! That just takes time, so labs will need to be done regularly to monitor that situation.      

Today Mark isn't feeling so perky. He is weak and unsteady on his feet. His dose of hydrocortisone was reduced significantly, so maybe it was too much. It's always such a guessing game. He will continue to be monitored closely.

If he is feeling well enough, Mark could go home as early as tomorrow afternoon or Tuesday morning. He has already been in the hospital for 25 days, so he is definitely ready to go home. On the other hand, being here gives peace of mind since constant monitoring allows any problems to be detected and addressed immediately. We're so thankful for the incredible doctors and nurses that are kind, caring, and competent!! 

(I'm always amazed when I see his photos. He can feel quite miserable, 

but when he poses for a picture, he always manages a big smile!)

A Good Day!

The ERCP was done late in the day, but it was totally successful! I felt better immediately after the procedure. By 6 am today, the labs showed bilirubin counts were halfway back to normal. Amazing! Fever was gone. I’ve had a great day. Ane’s inspiration was fact. Dr. Taylor said that heaven must not want me, as they have had several very logical times to take me and didn’t. We are glad. 

(That’s an understatement!!! Ane)

A Critical Situation

 The very thing we were hoping to avoid has happened--Mark has an infection! A couple of days ago, his bilirubin began creeping up, but that sometimes happens with IL-2. It was up more than expected yesterday, but there weren't any other concerning symptoms other than he just didn't feel good. A CT scan was done, but it was not conclusive. The stents looked like they were in place, and no tumors were pressing on the ducts, except a cluster on the left side of the liver that could be causing some blockage. Otherwise, none of the tumors have grown since the last scan, and some may be a bit smaller. There were no new ones, so either the targeted therapy or the T-cell transplant is working. That's the good news! But, an infection is definitely bad news! The chemo wiped out all of his white blood cells and took his immune system to zero, so his body can't fight infections. 

The GI team came in yesterday afternoon to discuss having an ERCP to replace the stents and ensure the ducts are draining properly. That would be the natural next step, but not with such a low blood count. At that point, the decision was to wait to see how things played out. Hopefully, his bone marrow would start producing more white blood cells, which would boost his immune system. 

Last night, his situation got worse with nauseous, chills, and a low-grade fever. By morning, the nausea was intense, his fever went up to 102+, and his blood pressure plummeted to around 75/40.  And, this morning, his labs showed that his bilirubin count had doubled from yesterday. Now, we definitely had a problem! Not only that, his blood counts were still down. Some numbers indicated that they should rise soon. But, in the meantime, he is in sepsis with no immune system. 

Dr. Taylor and Roxanne met with the GI team. They believe he has cholangitis again -- inflammation in the biliary tree. It was determined that the nurses would give him fluids and albumin to get his blood pressure up, as well as extra platelets. His BP needs to be above 100, and they'd like his platelets above 50,000. When the numbers are in a safe range, an ERCP will be done. If no blockage is found, another procedure may need to be done by a different team of doctors to drain fluids from the left side of his liver. 

Earlier, the plan had been to take Mark to ICU first to get IV phenylephrine hydrochloride to increase his blood pressure. That can only be done in ICU except for the IL-2 protocol. Only one bed was available in ICU, and that needed to be left for an emergency. He didn't qualify at that point since his BP had risen above 100. I'm thankful we're staying here as I don't know if I could be with him in the ICU, and it certainly would not have been as comfortable. We have a fabulous room (with a view and a mini-fridge), and we know the nurses here. But, of course, my first priority is his health and safety. 

At 4:00 pm, Mark was taken to short-stay for the ERCP. His blood pressure was in a safer range, but not his platelets. When last checked, they were only at 17 (far from 50) but, there is the urgency to stop the infection. He is there now. We're praying his body can handle the procedure, and the source of the infection can be found. While he is in a critical situation, we feel at peace. Your continued prayers are appreciated! 

UPDATE @ 6:00 pm:

Mark just got back to the room. The doctor said that the stents were clogged. They were removed and another placed. That would definitely cause infection, as well as for the bilirubin to go up!!! All went very well. Mark said that the pain in his abdomen is already less than it has been in weeks/months! We can breathe a sigh of relief and thank Father in Heaven for another miracle!!! 

On a personal note-- 

This morning before I knew how dire the situation was, I was pondering and feeling concerned that Mark wasn't improving the way we expected. The impression came that tomorrow would be a good day--that there would be healing.  I was relieved, but then I asked about today. Immediately,  I knew that it would be a difficult day. While I was concerned, I was comforted knowing what tomorrow would bring. How thankful I am for the sweet whisperings of the spirit that give such peace, comfort, and guidance.