The Culprit was Found

 The bacteria in Mark's blood was cultured, and it matches the bacteria common in the liver. Because bilirubin remains low and he recently had a stent replacement, there is no reason to believe it is from the stent. Even though the tumors in the liver are shrinking, there could be pockets of bile present which could cause infection. There's no large pocket that shows on any scans, so nothing can be done to remove any fluid build-up. Mark was given specific antibiotics targeted at that particular bacteria. So far, it seems to be working since he is feeling much better. He has had no fever or chills for several days, and his vitals look good. Yesterday, his red blood count was down, which was likely the reason for his tiredness, so a liter of blood was given. His blood counts are better this morning. 

The infectious disease doctor is concerned, as are we, that if we go home now, without any intervention, he could be back soon with another infection. But, there's no reason to keep him here, otherwise. So, a plan has been implemented for Mark to have Home Health Care manage his IV antibiotic. An HHC nurse will be here this afternoon with the supplies needed and teach us what we need to do. Mark will wear a pump that will allow a continuous flow of the antibiotic until the round is complete,

The biggest concern is that he could have a reoccurrence of C-diff. His labs show negative for the C-diff toxins but positive for colonization. That's a chance we will have to take since he has to have the antibiotics to get rid of the infection. We've been alerted to signs of C-diff, although it is rather hard to tell, especially since the antibiotics can cause diarrhea. 

At first, we were concerned about going home and having to return again in an emergency situation. But, after prayerful consideration, we feel inclined to move forward with discharge today. Of course, we would like to be home for Thanksgiving if we can do so safely. It looks like we will be. YEA!!! 

Happy Thanksgiving!!! We count our many blessings, including amazing doctors, nurses, and other staff. We are grateful for medications and ongoing research that continues to improve healthcare. Neither of us would be here today without the blessings of modern medicine. We are most thankful for a loving and supportive family who are willing to help us in any way they can. Good friends have blessed our lives in numerous ways, and their support is invaluable. Our blessings are countless and, at times, miraculous. We give thanks especially for the guidance we receive from above that gives us direction to know what to do and peace when we listen and obey. We are most thankful for a loving Father in Heaven and for his son, Jesus Christ, who is our advocate and constant help in times of need. 

**a fascinating insight from an infectious disease doctor at St. Vincent Medical Center: He was adamant that Covid is here to stay and that everyone will eventually get it because it is so contagious. Those who have had vaccines and boosters will have milder cases. The severe cases he sees in the hospital now are in unvaccinated patients.  He is concerned that Covid will continue to morph and become more dangerous even for children. He highly recommends that all eligible adults and children get the vaccine to protect themselves and keep from spreading it, especially to those who are older or who are immunocompromised. Mark would definitely be in that category. That's certainly food for thought. 

To the Hospital Again!

Being at home the past two days has been wonderful! Mark felt better than he had in months! He was still weak, but he worked on his computer: going through emails, making reservations for our Europe trip in June, and catching up on other projects. Last night, as I was preparing dinner, Mark came into the kitchen, cut up a pineapple, and sliced cheese for sandwiches. He hadn’t been able to do anything like that for a long time. It felt almost normal. He couldn’t stay up for long, but it was progression.

Around 9 pm, he hit the wall, so I got him into bed and then chills started. Four or five fuzzy blankets, hot from the dryer did little to help. Around 1:30 am, he seemed confused and was moaning. When I took his temperature, it registered 103. I didn’t know if that was correct, but had been told that it didn’t matter what it was; if he was running a fever, I needed to bring him in.

I put the foam pad in the back of the car, but when he complained that he couldn’t breathe, I called 911. When they arrived, they knew he needed to go, but Providence Portland was “red” so they couldn’t take him there. They were getting ready to help him to the car, when Mark managed to mumble that he wanted them to take him, so off to St. Vincent they went.  I was relieved, even though it was not our first hospital preference. 

Again, I knew he would be admitted, so I packed and napped, and came in this morning.

At the hospital, his fever initially registered 103, as well. When I arrived a hot air blanket covered him, which eventually helped stop the shaking chills. In all the times he had been sick, I’d never seen him quite so miserable. His vitals were not normal, but neither were they at dangerous levels. 

CT Scans and X-ray didn’t show any pneumonia. His bilirubin was fairly low, not normal, but not high. Labs showed some stress to his kidneys and liver enzymes were higher, but not alarming.  He got some oxygen and had Tylenol for fever and Fentanyl for pain and to help him sleep. He finally calmed down and slept in short intervals. 

Dr. Taylor called and was happy we brought him here. There were absolutely no beds at Providence Main. There evidently aren’t many here either, as we’re still in the ED. (Around 4 pm he was taken to a room.)

It’s hard to get hopes up and have them dashed, nevertheless, we believe he will pull through again. Your support means so very much to us! Our hearts go out to those going through tough trials, and some we know who have recently lost loved ones!

CT Scan Results

Mark is still in the hospital, but we are grateful. If we had gone home yesterday with the planned dose of hydrocortisone, it would not have been good! The emergency dosage was 150 mg of IV steroids which was reduced to a daily dose of 100 mg. Yesterday (instead of Sunday), Mark was taken off  IV and given hydrocortisone in pill form with the intention of moving to 50 mg a day. However, after 40 mg, he was nauseous and fatigued, so 30 mg more was given. Coming down too fast from the high-dose cortisol doesn’t work for him, so now they will taper more gradually. (Evidently, many patients handle the reduction without a problem.) The plan is for a discharge later today with a higher dose that will be decreased over time. 

Now, for the CT Scan results!! It was done last Friday, the day Mark went to the Emergency Department. Dr. Taylor had not seen the results when he came in to visit at the end of the workday, but he was pretty discouraged. With the infection and increase in bilirubin, he was convinced that neither the targeted nor the T-cell therapies were working. If neither of them was shrinking tumors and a blockage in the liver causing inflammation, the situation was grim. There are simply no other treatment options. Dr. Taylor didn't specifically say that Mark was terminal, but that was the implication! We hung onto the hope that maybe he was wrong!

When the CT report showed up on MyChart Friday night, it didn't seem nearly so bleak, but it's not easy to decipher. We didn't see Dr. Taylor over the weekend, but Monday morning, he was delighted that the report was SO much better than he anticipated! A tumor in the lungs has resolved, the largest tumor in the liver has shrunk, and others have not changed in size. That is fantastic news!! Something is definitely working, and we are hopeful it is the T-cell therapy, as the other can shrink tumors but doesn't eradicate cancer. Unfortunately, we won't know which it is for some time. 

The internists are pretty sure that Mark was suffering from the effects of adrenal insufficiency along with an infection brewing in the lungs. There was no indication of blockage in the liver, although the reason for the bilirubin increase is unclear. It has continued its downward trend. 

We are looking forward to getting the meds right and to going home!!! 

* Yep, we’re going home today!

A Mystery

Tests have not revealed the culprit, but antibiotics and high-dose hydrocortisone have made an enormous difference. Mark is feeling SO much better. His body is still immune-compromised, so infections can start quickly from any bacteria in his body. The doctor who came in this morning thinks the infection could be from pneumonia, but that is not conclusive. Fortunately, his bilirubin count is making its way back down. He is going on a pill form of antibiotic before he goes home to ensure it is enough. Also, a more gradual decrease in hydrocortisone is planned, which will also be started in pill form. If his body handles it well, Mark will likely be discharged tomorrow. 🤞

The CT scan results are in, but we won't have a chance to discuss them with Dr. Taylor until tomorrow, so we will defer commenting on them until we understand more. 

This recovery has been quick, but the source is still a mystery. That's okay, as long as it doesn't come back, and Mark is on the road to recovery. Much appreciation for your love and support! 

Another Infection

Mark’s first day home was the best, although he was weak. Wednesday and Thursday, he struggled to eat anything because of almost constant nausea. He slept most of the time, but his vitals continued to be good. 

This morning, he was moaning, and his temperature registered 103 on our home thermometer. Immediately, I contacted Dr. Taylor, who advised me to bring him to the Emergency Department ASAP or call 911. Unfortunately, he was too weak to get out of bed, so I opted for help. The medics registered a 101 temp, but they could tell he was not in good shape, so they were happy to transport him. It gave me time to get ready and pack, as I knew he would be admitted. 

Currently, he is in the Emergency Department at Providence Portland Medical Center on Glisan. Tests are being done to determine where the infection is. Nothing is conclusive at this point, but he will definitely be admitted. The hospital is full, so he could be in the ED for the night. **We just learned that he has been assigned a room on the 7th floor (YEA!). He was moved up around 10 pm.

As usual, a Covid test was required, but the doctor requested one that takes hours to get results. No visitors are allowed until the results are in, so I had to wait in the lobby for several hours. Finally, around 5:30 pm, I got to be with him. He’s still sleeping a lot, but he is mentally clear, and his fever is under control with antibiotics. 

 We continue to see for heavenly help, so we appreciate your prayers and positive energy on his behalf!!! 

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.