Happy 70th Birthday!!!

There have been times that I wondered if Mark would be here for his 70th birthday. Today, December 28th, we CELEBRATE!!! 

This past year has certainly taken a toll on his body—he is quite frail, often nauseous, and gets easily fatigued, but he is not in pain, his mind is clear, and he has not been in the hospital for three weeks. That’s quite an accomplishment! He does have fevers that come and go, but it could be a side effect of the meds, Braftovi and Mektovi. Even though life isn’t what we would prefer, we love the time we get to spend together! 

In a couple of weeks, Mark will have a CT scan to see what is happening with those tumors. Since he is still on the targeted therapy, we won’t know which is doing the most good—that or the T-cell therapy. Either way, we pray that something is causing those tumors to shrink and go away. 

May the coming year 2022, bring many good things your way!  

With love and appreciation, 

Ane & Mark

Happy Holidays

So far, the pill antibiotics are working. I'm generally getting a good night's sleep and doing pretty well during the day. Although, some days I am so tired I have slept all day and night, too. There are still bouts of nausea, dizziness, and weakness. The course of antibiotics will end tomorrow. We are checking my temperature regularly to catch any signs of new fevers or infections. Hopefully, they are gone and we can stay home through the rest of the year and beyond.

Ane has all the Christmas decorations up and it is delightful. She collects nativities, so we have lots, and it is sweet. What a joyful time of year!

Thank you for your warm thoughts and faith-filled prayers. We need them now. There are early signs from CT scans that are hopeful, showing some tumor shrinkage and others, at least, not growing. We will know more definite results in mid to late January when a PET scan will be done.

If all goes well, you may not hear from us for a bit, so, just in case, we hope you have a wonderful Christmas or Holiday and a Happy New Year!

80 Days

 Today was Mark’s 80th day in the hospital in 2021 (I miscalculated in the last post).  He was taken off IV antibiotics on Saturday, put on oral doses, and monitored for 48 hours. A CT scan showed some possible infection in the small airways in his lungs, but there’s no pneumonia, and he has had no more fever or chills. He will stay on oral antibiotics for 10 days. The good news is that he got to come HOME!! We’re praying that he can stay here for a long time! He was home for 8 days in October and 10 days in November. We’re hoping for 25 in December (the rest of the month.)

He’s weak, doesn’t feel good much of the time, and his tastebuds are tweaked, so it’s hard to find anything to eat. He gets a bit discouraged at times but does his best to smile and show his appreciation. We’re finding joy in this beautiful Christmas season. May your hearts be filled with love and peace throughout the holidays.

Back Again!

Mark was discharged last Wednesday a week ago from St. Vincent Medical Center after we were taught how to manage IV antibiotic infusions independently. The first time or two we changed bags was stressful, but we finally got the hang of it. 

How delightful it was to be with family over the Thanksgiving holiday. We hadn't seen some of them for well over a month, so it was a treat! 

Mark had his last dose of IV antibiotic around noon yesterday, and last night he started a milder oral antibiotic. He wasn't feeling good this morning but thought he was just tired and needed more sleep. Unfortunately, that wasn't possible since he had a 9 am appointment with Dr. Taylor. By the time we arrived, Mark needed a wheelchair to go in because he felt so weak. When his vitals were taken, we were surprised that his fever was almost 102! Although he hadn't had chills, the fever could indicate infection. Dr. Taylor didn't want to take any chances, so he requested that Mark be admitted to Providence Portland Medical Center. A hospital bed would be available later in the day, so Mark was taken to a private room in the infusion area of the cancer clinic, where he was given IV antibiotics. Once the antibiotics took his fever down, he felt much better. Although/ most of Mark's labs looked good, there is obviously something amiss. More tests will be done. 

We're so thankful that Mark's fever spiked while we were at the appointment. If it hadn't, we'd likely have had to go through ER again, and that's certainly not our preference! 

Since visitors are not allowed in the infusion area, I went home to pack. Mark was taken to a room on our beloved 7th floor, the cancer wing, by late afternoon. Have I mentioned that Mark has been in the hospital for over 80 days this year, (Oops, I miscalculated--it's only been 75 days so far.) But, of course, that doesn't include the many days spent in radiation and other appointments! Yep, the hospital feels more and more like home, away from home. 

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. 

Last Day of IL-2

Because Mark did so well, he got THREE doses of Interleukin-2!!! Dr. Taylor expected only one, so he was thrilled. But no more--this aspect of the treatment is over. Yea!!! The rigors were the most challenging part for Mark. The first time was the worst, and yesterday's was pretty bad. Dr. Taylor and Roxanne were here yesterday during this episode, so they saw how awful it was for him. He told us that we'd see how his labs were, and if it looked good, he could have one more, but he would leave the decision up to us (Mark--I'm not making that call!) This morning they came in, and Mark was willing to go through it one more time. Dr. Taylor had already told us that three doses would be the limit. 

The nurses were ready with warm blankets and Demerol but were out of the room when the rigors started. As soon as Mark exhibited the first signs of chilling, I found them, and they came running. Perhaps because they were on it so fast, it was not nearly as bad as the prior two! That was such a tender mercy, as he was really dreading it. Now, he is sleeping peacefully with between 15-20 blankets piled on top of him. 

He is now receiving daily shots of Filgrastim to treat neutropenia (low white blood cells) caused by the chemo. "It is a synthetic form of a substance that is naturally produced in your body called a colony-stimulating factor. Filgrastim helps the bone marrow to make new white blood cells." It has a long list of side effects, as well, but it's essential to get his immune system up and running smoothly again. Claratin, the allergy medicine, is actually used with it, as it combats some of the side effects. 

Dr. Taylor said that his white blood count is still going down and should hit the lowest level in a day or two, and then it will start shooting back up. When it's back to a safe level, he can be discharged, which could be as early as the middle of next week, but more likely the end of the week. 

Now some explanation as I understand it about T-cell therapy. There are different kinds.

• TIL (tumor-infiltrating lymphocyte)  therapy is a treatment in which "tumor-infiltrating lymphocytes (a type of immune cell that can recognize and kill cancer cells) are removed from a patient's tumor and grown in large numbers in a laboratory. These lymphocytes are then given back to the patient by infusion to help the immune system kill the cancer cells."  This treatment has been around a long time and has had many positive results. The problem is that many T-cells in the tumor are grown along with the specific ones that actually recognize and kill cancer, so the percentage of actual cancer-seeking warriors is low.
• CAR-T is "A type of treatment in which a patient's T cells are changed in the laboratory so they will attack cancer cells. First, T-cells are taken from a patient's blood. Then the gene for a special receptor that binds to a certain protein on the patient's cancer cells is added to the T-cells in the laboratory. The special receptor is called a chimeric antigen receptor (CAR). Large numbers of the CAR-T cells are grown in the laboratory and given to the patient by infusion." This has had great success with blood-type cancers but does not do so well with solid tumors. The T-cells seem to be killed by the cancer cells when they enter the tumor.
• ACT (adoptive cell transfer) is a therapy in which T-cells are taken from the patient's own blood, grown in large numbers in the lab, and infused into the patient’s body.
• Dr. Tran is doing ACT therapy, except he finds the exact cells that recognize cancer by putting small amounts of cells into Petri dishes and using proteins that mimic cancer as bait to see if the cells attack. This is very time-consuming, and often the cancer fighters are never found. Only two of these cells were found in the blood taken from Mark's body, and those two were not exactly the same. Those specific cells were cloned, resulting in 12.78 billion cells, but only about 7.5 billion will actually attack cancer. The others just tag along. They didn't develop into warriors. 
• This is a trial therapy--it has not been approved for general use. However, Dr. Tran has been working on this treatment for years and is eager to see positive results and have it approved to benefit more patients. 

If you were confused about how this therapy is different from other T-cell treatments, hopefully, this explanation helped a bit. It's all very scientific and definitely cutting-edge research. 

Since Mark got fewer drugs today, he is awake and feeling quite good, other than weak. If there are no more snags, he should be on the road to recovery! It could be months before we know if this treatment is working. If it's not, we'll probably know sooner, although he is still taking the Braftovi and Mektovi along with this since his tumors were growing too fast for this to work without them. He will have to go off of the targeted drugs at some future date to see if this treatment has been successful. Dr. Taylot said that we should definitely write a book about all of his cancer treatments and successes! 

Thank you so much for your unending love and support!

Before IL-2 (look at all those bags!)

About an hour after IL-2 

The Big Day is Here

This is the day we’ve been waiting for—12.78 billion cloned T-cells were infused into Mark’s body, about half of which recognize cancer (that’s different than what we previously thought)! It felt like a party when the team arrived with the small blue cooler containing those precious cells (Mark calls them the cancer-seeking Mandalorian warriors)!! Dr. Urba waved from the hall. Dr. Taylor, our oncologist and research doctor, Dr. Eric Tran, who has been cloning the T-cells,  Kim, the clinical research nurse, and Roxanne, the nurse practitioner over advanced treatments, came in together at 2 pm. This procedure is a big deal! 

While Dr. Tran explained the process, the bag was hung, and the flow began. I caught some of Eric Tran’s remarks on video. (Links below) While Mark is the 7th to receive this particular type of T-cell therapy from Dr. Tran at this hospital, three of them were a different process. The two others using this process were not melanoma patients, so Mark is actually the first in his class! While various forms of T-cell therapy have been around for a long time and have become mainstream, only a few hospitals in the country use this particular cutting-edge therapy, so again, how fortunate we are to be here! 

The T-cell infusion was event-free; only some mild chills and fatigue followed. At 4:40 pm, the IL-2 was given, and for the first hour, it seemed that nothing was going to happen. Then, at 5:45, the rigors started, and they were the most intense he had ever had. He shook to the core for at least 20 minutes. It took 3 doses of Demerol to calm him down, which knocked him out for an hour or so. He’s been in and out since then. His blood pressure has dropped and although it is not to a dangerous level, it will need to be checked every two hours throughout the night. Depending on how his body responds, he could have another dose tomorrow, but this could be the only one. Mark is being well cared for—fantastic doctors and nurses. I’m so thankful that I can be here to care for him, as well. The love and support we have felt today, from you and heaven, has been tremendous! 

        (L-R: Dr. Matthew Taylor, Dr. Eric Tran, Roxanne Payne, Dr. Walter Urba, Kim Sutcliffe)

https://photos.app.goo.gl/1bXtU2roFCwGtPY17 

https://photos.app.goo.gl/xqrTPH8o9m6UQXXn8

https://photos.app.goo.gl/J9HnV46cUZdZEnv99

 

Update Thursday, October 28, 9 am:

Mark’s blood pressure was good through the night, and other indicators were positive, so another dose of IL-2 was given this morning at 7 am. An hour later, the dreaded rigors kicked in. He had 3 doses of Demerol, 1 Dilaudid, and some Zofran for nausea, so he was out for a while. His fever went up to almost 102 but has dropped. Currently, his blood pressure is 90/54, which is expected. He is groggy and fades in and out. Even when he is only partially coherent, he thanks every nurse and doctor who comes in. 

This morning I read this verse in Doctrine and Covenants 124:15, and felt that Mark’s name could be substituted for the one in the text, “And again, verily I say unto you, blessed is my servant [Mark Hornibrook]; for I, the Lord, love him because of the integrity of his heart, and because he loveth that which is right before me, saith the Lord.”  When I read it to Mark, he said, with tears in his eyes, “I do love him!”

Chemo is Starting!

Late last night, Mark started feeling much, much better!!! Dr. Leidner is quite sure that he was low on cortisol. It's amazing how the body knows just how much to produce when it's under stress. Since he doesn't produce any, it's always a guess as to how much he needs--and it was much more than expected. High doses were given yesterday, along with lots of fluid. Today is night and day different from yesterday!! Infections, also, seem to be under control. so, CHEMO IS STARTING NOW!!!😃

As long as he doesn't have an allergic reaction, the next few days should be fairly boring. He will be tired, but the tough side effects won't start right away. We've been through training about what to expect, and how to take steps to stay as healthy as possible. I won't go into all of that, at least not now. 

After yesterday's blog, we wanted to get the good news out as soon as possible! With so many prayers in his behalf, it is having impact!! Maybe this isn't an appropriate analogy, but...it's kinda like, "The squeaky wheel gets the grease!" 😅

A Narrow Window

Yesterday afternoon, Mark was able to stand long enough for a shower. He and the male nurse noticed red, raised bumps on his abdomen. The rash quickly spread to his face, arms, chest, and legs. It was itchy and uncomfortable. He likely had an allergic reaction to the antibiotic for sepsis, so it was discontinued and another started. Poor guy can't get a break---everyday it's something else! Benadryl helped with the itching, and he slept quite well. Around midnight he was moved to a larger room with a beautiful view--that was a plus! (Of course, he didn't see the view until this morning.) I might even stay the night here, especially since the C-diff seems to be under control. 

When I arrived at the hospital this morning, the cancer doctors were examining Mark. One is filling in for Dr. Taylor, and he works closely with Dr. Eric Tran on T-cell therapy. He was forthright in telling us that Mark is NOT in great shape to undergo the T-cell treatment. His infections could become acute once chemo takes his immune system down, and his body may be too weak to fight. If it is started, he will remain in a tenuous position for several weeks. Unfortunately, today is not going very well--he is extremely weak, mostly sleeping, often dizzy, and occasionally nauseous. His blood pressure is lower than normal, but thankfully, he isn't running a fever or having chills. 

The doctors will be here again in the morning to make the decision whether to start chemo. The current plan is for only two days of chemo, two days of rest, and the infusion of T-cells on Wednesday, followed by IL-2. The infusion cannot be delayed any longer as the cloned cells start dying. This is our only window of opportunity to use the needle-in-a-haystack cells that have been multiplied many times over. But, is his body strong enough?  Again, supplicating heaven in his behalf would be greatly appreciated! With sincere gratitude!! 

Sepsis Again!

Yesterday morning, because Mark was so chipper, Dr. Taylor was confident that chemo could start on Wednesday, so the pic-line was placed. Unfortunately, Mark felt weak and sick as the day progressed, but we weren't too concerned since he is still healing from the C-diff.

This morning, he started running a high fever and had chills. More labs were done, and the conclusion was sepsis again! This requires a different antibiotic which he is now on. Of course, chemo will have to wait. Wiping out his immune system with sepsis in his body could kill him--the doctor was quite blunt about that. The cancer cells will continue to be cloned, and it seems another few days before the infusion won't be a problem. These infections are definitely the concern now. He cannot have the T-call therapy unless they are under control. 

Of course, having the sepsis manifest itself before the chemo was started is another tender mercy! All of your prayers are having a positive impact, for which we are most grateful. Continued prayers are appreciated. We're at a critical junction, but God-willing Mark can pull through again! 

Two Days Late, but Just in Time

Although Mark is feeling much better than yesterday, he still is dealing with the effects of C-diff. Saturday night was the worst--he hardly slept because of constant diarrhea. By Sunday morning, he was exhausted. He has not slept for more than 2-3 hours at a time for weeks/months. Before coming to the hospital, it was maybe one hour between nature calls. Last night, he finally slept for almost five hours straight! What a difference it made! That is a difficult feat in a hospital. It took several nurses actively running interference to keep intruders out. They managed to get his blood drawn after 6 am, instead of 3-5 am, which is the best sleeping time. (The blood-suckers come in, switch the bright lights on, and stick him with a needle--definitely disruptive to sleep!) The nurses on this floor are very sensitive to their patients getting sleep so they can heal. Some cancer patients are here for months, so they need rest. The nurse yesterday was sure that Mark had been suffering from sleep deprivation, along with the infection. 

This morning, Dr.Taylor met with Dr. Tran, who is growing the cancer-fighting cells, and the infectious disease specialist, focusing on fighting the infection. Together they came up with a plan. Chemo will be delayed for two days to give Mark's body time to heal. The pic-line will go in tomorrow, and chemo will be administered Wednesday through Saturday. That still gives enough time for his body to be ready for the infusion on the scheduled date, Monday, the 25th. This is the best possible scenario. Starting chemo now could aggravate the infection, but delaying the infusion would risk losing some of those valuable warriors. We appreciate our doctors working together to come up with the best option.

He has been here for 4 nights, so he only has about 16 to go! It already seems like a long time--just getting used to our new normal. We're certainly grateful for the fantastic nurses and doctors. We're in good hands, along with the very Best hands!

Another Ambulance Ride

On Monday, Mark felt good, still weak, but more energy, so we were looking forward to a fun week together before the Clone Wars began. Unfortunately, that didn't last long before he started running a low-grade fever, had severe chills, and was lethargic. While we hoped these were side effects of the cancer meds, they matched his symptoms before the last infection which went into sepsis shock. But, that didn't make sense because his labs continued to improve. Wednesday, when he went to his doctor appointment, we learned that his bilirubin count continued to move toward normal, indicating no blockage. So, what was going on?!!. 

Thursday morning, Mark awoke feeling even more exhausted than the day before. He managed a brief shower but started feeling faint. I helped him to the chair in the dressing room before he passed out for a few seconds. It wasn't long, but enough to remind me of the last episode. When he came to, he wanted to lie on the floor. He was so weak and pale!  Once he was situated, I grabbed my phone and called 911. They arrived at 8:15 am, and it didn't take long for them to determine that he needed to be transported to the Emergency Department, and Providence Portland was open.

I had a feeling that he would be staying, so I took time to pack. When I arrived, the decision had been made that he would be admitted. So he was in a holding area until a room became available. Finally, around 6 pm, he was taken to our favorite 7th floor, the cancer wing. That's where he would need to be on Monday, anyway. He continued being extremely weak, nauseous, chilled, and feverish. 

Friday morning, after more tests, the culprit was found. He has C-diff (Clostridium Difficile), a highly contagious bacteria in his stool caused by the antibiotic used to correct the last infection. It wiped out the good flora in his gut allowing this bacteria to grow. So he is on a different antibiotic, and today he is awake, eating, moving around, and feeling so much better. We're grateful for antibiotics, but they certainly can cause other problems! 

Dr. Taylor visited today and feels confident that the T-cell therapy can begin this coming Monday, the 18th. Another doctor would rather wait a few more days, but it all depends on the severity of his case and how Mark responds to the antibiotics. He will definitely be staying here until the Clone Wars begin. 

I got a room at the Providence Guesthouse, about two minutes away. It's nice to have a place for my belongings and especially to get a good night's sleep! Besides, I don't want to be anywhere near his bathroom! 

 So, once again, "Life is what happens when we're planning to do something else!" We've learned to roll with it, and it's incredible how so many things actually do work out--many tender mercies along the way. We feel so very blessed!!

What to Expect

This past Thursday, October 7, Dr. Taylor called with the news that FDA approval had been given! That was fast!! He met with other doctors in the department who work with T-cell therapy, and without expressing his bias, he explained Mark's situation to see what they would do. Each recommended starting as soon as possible. So, with their expert advice and our personal feelings, Mark will enter the hospital on Monday, October 18.

He will be at Providence Portland hospital, back to our beloved 7th floor. He has one week to gain weight and regain some strength. He is currently up about eight pounds! 

Kim, the nurse overseeing the procedure, called on Friday to review what we need to know with this treatment. (Most of this we already knew and shared in the last post. It's what happens after discharge that was surprising.)

• The first week Mark will receive chemotherapy to basically destroy his immune system! 
• The following Monday, October 25, the cloned warriors will be introduced into his body.
• IL-2 will be administered to help boost his immune system to produce more cancer-fighting cells. 
• Currently, his discharge is scheduled for November 3. but that will depend on how he is doing.
• For the following three weeks, he will need to go to the cancer clinic every day (including weekends) for about three weeks to get a shot and see if he needs blood transfusions and/or platelets. She assured us that some would be required. If so, he'll be at the clinic for 4-6 hours that day. 

The biggest concern will be infection! His immune system will be its weakest when he is discharged, so we must be extra vigilant that he is not in contact with anything that might compromise his weakened state. Already, we are taking extra precautions to isolate ourselves so as not to catch a cold, flu, Covid, or anything else. If he got sick this week, he might not be able to proceed with the treatment, and the cells would be refrozen, which would cause some loss. Of course, he could also get sick from the normal bacteria in and on his own body. Actually, today he has been chilled and is running a low-grade fever. It could be an infection, but we're hoping it's from the cancer meds. (Prayers, please!)

Currently, Providence Main is allowing one visitor, but that depends on the Covid caseload. I was only allowed into the ER at St. Vincent because of their Covid numbers.  Kim is hopeful that I can stay with Mark as it is helpful for both him and the nurses. I certainly want to be with him! 

We may be more sensitive to potential infection than others might be. Our son, Tyler's best friend in high school, an All-American football player who would soon be graduating, got a sore on his leg that wouldn't go away. He was diagnosed with an aggressive form of cancer, but he was young and strong, so his treatment was aggressive. The tumor was irradicated, but an infection took his life.

While we would love to be close to our family and friends, please understand why we are hesitant and cautious. We certainly don't want to offend anyone and we will definitely miss the hugs! However, this is just for a time, and we hope that Mark will be feeling fantastic by the festive Christmas season! 

Today we have had tender feelings as Mark was released from the Lake Oswego Stake Presidency in the Church of Jesus Christ of Latter-day Saints. He has served for 12 1/2 years, and it has been a sweet experience. He has loved the people he served with and those he served. What a joy it is to serve others.

Thank you for your faith and prayers, it appears again, that this will be a crunch time. Mark will need all the help he can get, to make it through and destroy the cancer.

Let the Clone Wars Begin

Mark was discharged yesterday morning. It will take time for him to regain strength and gain some weight, but there's a much better chance of that happening here, at home. His potassium is still low, so we're focusing on foods high in potassium and lots of high-calorie foods. That's a shift in thinking! 

Dr. Taylor called this afternoon after meeting with Eric, who is in charge of the T-call therapy. He expects to get the okay from the FDA possibly as soon as this Friday. If so, they can take his cancer-fighting cells out of the freezer and start cloning them. It takes two weeks to clone the 3 billion warrior cells to inject into Mark's body. Before that procedure, he needs to be in the hospital for a week for chemotherapy to eliminate cells that fight against the warrior T-cells. That could mean going into the hospital as soon as October 18th (Happy 89th  Birthday, Mark's mom)! That's only two weeks away!!

Can he handle this arduous procedure with his body still so weak? That is definitely a concern, but if the current meds stop working, the tumors could grow quickly. The tumor near the bile duct doesn't have to grow much to cause blockage again. This may be the window of opportunity needed to use the T-cell therapy.  So, sooner may be better. We'll talk to the doctor Thursday to make the call whether to start October 18th or wait a week or two. Of course, the FDA approval has to come in this Friday for that to happen. The needle-in-the-haystack cells that have been frozen will need to be thawed before cloning them. If they have been thawed, and we decide it's too soon to begin the process, the cells can be refrozen, but some will be lost in the process. We don't want to lose any of those precious cancer-fighting cells. Please pray that we will be guided to know the right timing for this procedure. It's still amazing that those cells were found and that the FDA has responded so rapidly.  It won't be an easy procedure — two weeks in the hospital with chemo and more IL-2, but it is the only treatment available that has the potential to be durable.

It is delightful to have him home and to be together again. Our children joined us last night to celebrate another victory and express gratitude for the miracle of once again having his life spared! We laughed, cried, expressed our love for one another and our faith in the Lord Jesus Christ. It was a sweet, tender evening together.

Mark is glad to be back among the living and the sane! He doesn't remember much of what happened, even before the emergency, when he was high on painkillers that caused some hallucinations. We've kept a list of some of the funny things he said and did. Sharing those will be entertaining. 

What amazing and loving support we feel from you all!!! Thank you! Love, Mark, and Ane

Scan Results and More

Mark went off of the vasopressors last night. With some effort on my part, we got approval for him to start the cancer medications again. He needs them to keep tumors from growing! 

The MRI was not conclusive enough, so this morning a Hepatobiliary scan showed no obstruction in the biliary duct. That was also verified by labs that have shown a rapid fall in the bilirubin levels. So likely, the cholangitis inflammation caused the blockage, and the antibiotics cleared the pathway. However, a tumor had been pressing on the duct, which likely caused the cholangitis in the first place. The cancer meds may have shrunk the tumor enough to clear the duct, but the infection had already caused inflammation. 

The scan revealed that Mark also has a diseased gallbladder (Acalculous Cholecystitis) caused by medications, quick weight loss, and diminished liver function from extensive metastases. The team is currently deciding the next steps to take to resolve this issue. 

In the meantime, Mark is feeling much better. He was moved to a regular hospital room and continues to get excellent care.

Dr.Taylor got a response from the FDA today asking for clarification regarding the request for Mark to have the T-call transplant. He wrote the response this afternoon and should hear back from the FDA in a couple of weeks. If approval is granted, it only takes weeks, not months, to grow the warrior cells. Therefore, Mark could have this procedure much sooner than expected. Dr. Taylor is thrilled that the tumors are shrinking so quickly but is concerned about the longevity of the current medications The T-Cell transplant will be hard on his body, but it still has the possibility of eradicating cancer. So, we need to focus on getting Mark's strength back.

 Miracles keep happening, and we are so grateful!!! When I explained to Dr. Taylor all of the details about the emergency, he said Mark was minutes from death. He was emphatic that our son and Mark's sister saved his life!

A Very Close Call

 Monday afternoon, September 27, Mark was awake, ate well, watched a movie, and was better than he had been in weeks. Tuesday morning, he was dizzy, nauseous, and vomiting.  Around 10 am, he passed out on his way to the bathroom. Fortunately, his sister helped block his fall. He came to enough for our son to help him into a chair, but soon he was totally unresponsive, his pupils were large and staring straight ahead, and his jaw was slack. It was awful for our son, who thought he was watching his father die. By the time the EMT arrived, Mark's blood pressure was around 60/40. He was strapped onto a stretcher and taken to the ambulance. Neither Meridian Park, the closest hospital, nor Providence Portland, where we typically go, were accepting patients into ER, as they were totally full. St. Vincent was the next option, and fortunately, they were open. We all thought that this was the end. If EMT had not arrived promptly, it could have been. 

Labs were done that indicated infection in his body, which had gone into sepsis shock. Other signs indicated cholangitis, an infection in the biliary tree caused by a partial blockage. That would account for his jaundice, nausea, vomiting, and pain in his upper abdomen. An MRI was ordered, which needed to be done yesterday, but the overwhelmed staff could not get him in until this morning. The MRI is essential to determine if an ERCP can be done to clear the blockage, He is still on vasopressors to keep his blood pressure from dropping, but it's now a low dose. He must be weaned off of them before he can leave the ICU. 

Visitors are not permitted in the hospital, but thankfully his mind is clear so he can communicate with us via phone, and he actually sounds quite good. The MRI is being done now, so we just wait to hear what will happen next. Please, please keep those amazing, beautiful prayers going. We believe he will pull through again, which is incredible. Yesterday, my prayer was to keep him alive until I could be with him in the ER. I was amazed that he was responsive when I arrived and so very thankful. Your love and support have sustained us! Thank-you!!!

Braftivo & Mektivo

 Mark started the new targeted therapy medications last Wednesday evening. Thursday morning, he had his last dose of Hydrocodone and Haldol. He has been pain-free since then! The Fentanyl patch is on, but it was due for a change on Friday. Dr. A had us leave it on since it will gradually wear off. Mark has been able to lie on his right side and on his back, something he hasn't done for months! Obviously, tumors are already shrinking!! 

Mark has always responded quickly to these targeted medications! While they are not a cure, they have shrunk and caused tumors to disappear. Our hope is that they will shrink the tumors which have caused a total blockage on the left side of the liver. We assume that is what is currently causing jaundice. Another blood draw will be done later this week. 

Since he started these meds, Mark has been even more exhausted and weak than before. Fatigue is the first listed side effect. In the past, fatigue was most significant while the tumors were shrinking. A lot is going on inside his body, so rest is probably the best thing. 

There are serious side effects that can happen with these medications, but he has handled the past targeted therapies with minimum adverse reactions, so we're counting on the same results. 

As described below, these drugs could keep the tumors from growing for a median of 14 months. That is definitely long enough for the T-Cell therapy to be administered after the cancer cells have been cloned. 

A week ago, I wondered if it was time for Hospice, but now, we have hope that it is not the end! Once again, we are amazed and grateful!! (We are preparing for the worst and hoping for the best!)

This is what I found online to describe these medications:

BRAFTOVI (braf-TOE-vee) + MEKTOVI (mek-TOE-vee) is a targeted oral combination therapy used to treat people with melanoma that has spread to other parts of the body (metastatic) or cannot be removed by surgery (unresectable) and has a certain type* of abnormal BRAF gene. (Mark has this mutation.)

BRAFTOVI + MEKTOVI is not chemotherapy or immunotherapy. BRAFTOVI and MEKTOVI are two targeted therapies that, when taken together, can be used to treat this specific type of melanoma.

BRAFTOVI + MEKTOVI is a kinase (KIGH-nase) inhibitor combination. By targeting the signaling pathway at different points, BRAFTOVI + MEKTOVI helps to inhibit increased activity that causes melanoma cells to grow out of control.

BRAFTOVI + MEKTOVI helped people live 2x longer without their cancer worsening

In the trial, patients (192 total) receiving BRAFTOVI + MEKTOVI lived without their cancer worsening for a median of 14.9 months vs 7.3 months for patients who were taking vemurafenib, another targeted treatment, alone.

BRAFTOVI + MEKTOVI has been shown to be more effective at helping tumors shrink or even disappear

In the same clinical trial, the overall response rate showed that 63% of patients taking BRAFTOVI + MEKTOVI saw their tumors shrink or disappear, compared with only 40% taking vemurafenib alone. (vemurafenib = Zelboraf, which was the 1st generation targeted therapy that Mark was given when first diagnosed in 2012.)

The Family Photo

 This past week has been full of ups and downs. Some days Mark seems to be making good progress, and other days, he does nothing but sleep. Managing pain has also been challenging. Last week, a blood test showed that the bilirubin count had gone down, but unfortunately, the one yesterday revealed that it was back up. 

After an hour on the phone with the specialty pharmacy, the 3rd generation targeted drugs, Braftovi and Mektovi, shipped, so we should have them tomorrow. In the past, these types of medicines have worked quickly to shrink tumors, so we have hope that will happen again. 

We had planned to get a family photo in early September since our last one was at our 40th wedding anniversary celebration in 2018. Since then, three additional grandsons have joined our family. But, as often happens, conflicts got in the way, so the photo session was canceled. This past Friday, the 17th, I had a distinct impression that we needed to have our family photo taken soon. I immediately contacted one of our children.  After looking at the weather forecast, we realized that the best option would be to get together that very day. Really? That certainly didn't seem very likely! Gathering our 5 children, spouses, and 19 grandchildren at the last minute with no conflicts seemed impossible. Nevertheless, phone calls were made, and to our amazement, everyone could come around 5:30 pm. The photographer we had planned to use was also available. It was a treat to have Mark's mother, stepdad, and two sisters with us, as well.

That was all fantastic, but we had another problem--Mark was so weak and exhausted that he had hardly been out of bed all day. But, after a special prayer, he joined us while the group photos were taken. He had a big smile and no pain the entire time, and although his color was a bit yellow, he looked fabulous! We got the digital images a few days later and were absolutely amazed at how well they turned out! It certainly felt like another sweet miracle. 

How we love this beautiful family!

Liver Obstruction

 We left the hospital around 7 pm from the stent replacement last Friday, the 10th. Mark slept almost constantly for two days after the procedure. From the report, I learned that the reason for the blockage was a new tumor. Nothing is stopping their rapid growth. By Sunday night, he was feeling a bit better, and his mind was clearing. Around 1 am, he became restless, so I gave him the proscribed Ativan to help him calm down. Shortly after that, he became agitated and extremely confused. Neither of us slept the rest of the night. In the morning, the pain management doctor asked about his symptoms which included dizziness, double vision, headache, nausea, vomiting, and hallucinations. She was concerned about a stroke, but he didn't have any of the other typical signs. Nonetheless, she encouraged us to go to the nearest ER, so Monday, the 13th, we spent the day at Meridian Park Hospital. 

The CT of the brain was clear, but his liver enzymes were elevated, which was not a good sign, especially since the stents had been placed. After the CT of his abdomen, we went home. Since Mark is so weak and unsteady, he could easily fall. When he is confused, he gets out of bed to do projects that his mind has conjured up. Our children made arrangements to be with me 24/7 to monitor him at all times. 

Tuesday morning, we learned that the cluster of growing tumors has caused blockage on the left side of his liver. Unfortunately, there's nothing that can be done except shrink the tumors. We had Tafinlar on hand that we have started. Yesterday his urine was lighter, indicating that the bilirubin count is decreasing. Maybe the tumors will shrink enough to allow drainage. Today we got word that the new generation targeted therapy drugs have been approved and will be mailed to us. They may work even better than the last ones.

Mark continues to have extreme fatigue. He can get up for short stents, but he has no stamina. An intermittent low-grade fever could be a side effect of the Tafinlar. Hopefully, it isn't from infection. Pancreatitis is always a concern after an ERCP, but he hasn't had the pain typically associated with it. Tomorrow's lab work will give us more insight into what is happening. 

Our pain management doctor has worked with many cancer patients. She said, as did Dr. Taylor that this can go either direction. He could bounce back with the targeted therapy, allowing him to possibly have the T-cell transplant, although that would be months away, as FDA approval is required for each individual case. Once they get the okay to proceed, it takes several months to clone enough warrior cells, and the procedure to put them back into the body is tougher than any other treatment he has had thus far. The clinical trial is no longer an option since we're using the targeted therapy. His body has been fighting cancer for 10 years, and it is getting more aggressive. His body may simply shut down, even if the blockage drains. She explained that cancer doesn't often progress along a typical timeline, as do some diseases. He could feel fine one day and be gone the next. It's good for us to know that so we are prepared. Our children and grandchildren are coming to visit a few at a time. There have been many sweet moments. It's not all sadness here. We laugh and enjoy our time with him and each other. 

How we appreciate all the loving support, we have and are currently receiving. We have no idea what tomorrow will bring, but today is a beautiful day. 

Another Stent Replacement

 We arrived at Providence Portland Main Medical Center at 9:15 am. The receptionist expected that I should pick him up around 1:30 pm. They were about an hour late getting started. In the past, his bile duct procedures were longer than normal so I wasn’t surprised when I learned that he didn’t get to recovery until 2:30 pm. When the nurse called and told me that he had to meet certain requirements to be released, one of which was to have no nausea, I though, “You may have him there for a week!” It’s getting close to 5 pm, and I just got a call that he’s still nauseous so the nurse will give him more anti-nausea medicine. An email notified me that there was a new report in his My Chart. It indicates that 2 stents were placed. YEA! Both times before, Dr. Razzak has wanted to place two, but hasn’t been able to do so. This should help the bile to drain more quickly, and bring his bilirubin count down, so he can start the ALPN-202 infusions.

Wednesday afternoon, we met with the pain management doctor. She reviewed what he has been taking for pain, and it has definitely been too much. She adjusted the dosage of some, took some away, and introduced others. One of the new medications will hopefully help with nerve pain. She explained that all of his tumors are pressing on nerves —even those in the liver are pushing on the lining which is where the nerves are. The cluster at the bast of his spine are creating the most pain. The obstructed bile duct has been another source of pain, but we have learned what he can and can’t eat—absolute NO beef and very little fat of any kind, as well as no sugar or processed foods. I’d lose weight, too, if I stuck to such a healthy diet.

Wednesday night, he started exhibiting some signs of confusion, agitation, and imbalance. He was up most of the night. Since I got very little sleep, our kids were quick to set up a schedule to help out. They’ve been wonderful! Yesterday afternoon through this morning one of them has been with us, and will continue tonight. Not only can I get rest and a few things done, they have added some much needed humor! 

Well, it’s now 5:30 pm, and I’m still waiting. I could have gone home, but last time I dropped him off, his liver biopsy was cancelled, so I was glad I had been close by.  I’ll post this now, and update it later with more info.

The current plan is for him to leave around 7 pm.  Sounds like he’s still very sleepy, a bit wobbly, and has some confusion, but is improving. (If I don’t post now, it may not happen.) 

A Firm Foundation

Our theme song throughout much of our married life has been "How Firm a Foundation." A few of the words of this hymn were put into Mark's mind when he would have anxiety over our struggling business years ago, "Fear not, I am with thee." Since the beginning of this melanoma journey, those same words have often given us comfort. At church meetings, this hymn would be sung at times that we needed it most. 

The words of the verse that have been most meaningful to us are:

Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I'll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous, omnipotent hand.

We have felt his hand in our lives on so many occasions. While some situations have tested our strength and resilience, we have never felt alone. He has always been there to give us aid, and he has literally caused Mark to stand when we wondered if he would ever stand again. Also, we have felt tremendous loving support from our dear family and friends. 

Today, as we were listening to a gospel study class, this hymn was referred to in how the trials we endure actually help us build a firm foundation. That gave us a new perspective. When we reread the entire hymn, this verses stood out to us:

When through fiery trials thy pathway shall lie,

My grace, all sufficient, shall be they supply.

The flame shall not hurt thee; I only design

Thy dross to consume and thy gold to refine. 

A dear friend shared a scripture at church today that reminds us that these experiences (she prefers "experiences" to 'trials')  are for our good. "...peace be unto thy soul; ... thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high."

When we're in the midst of these fiery trials, it can burn, but this perspective gives us courage and hope. As we look back on our lives, we are grateful for many of those difficult experiences that tutored us and allowed for amazing miracles in our lives. 

Oh What a Night

 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. 

Fantastic News

The past week has been tough!! Mark's pain has increased in intensity almost every day. The cluster of tumors at the base of the spine hurt his back, cancer in his hip has now grown enough that it causes pain, and the tumors in the liver are pushing on the lining where the nerves are, so the pain in his side gets quite intense. Last Sunday was the worst, so we texted Dr. Taylor. Quickly, he gave us advice on how to manage the pain with the meds we already had. Mark wears a Fentanyl patch, takes Hydrocodone every 4 hours and Dilaudid every 3 hours. His pain rarely goes away completely, but it definitely helps. When I asked him if he has times with absolutely no pain, he said it happens occasionally, and when it does, it's worth celebrating! Next Wednesday, he will meet with a Palliative Care specialist to help manage the pain until the tumors shrink.

Today we met with Tara, who will oversee the clinical trial ALPN-202. We signed the papers and will actually get paid a small amount to participate in the study. She also gave us our schedule. The CT scan was done this afternoon, and the MRI will be this Friday. The first infusion is next Tuesday, the 7th, which is sooner than we had anticipated! He'll be at the clinic for at least six hours, and I can't go in with him (darn Covid!). (I still have to drive--he can't, with all these drugs!)  It takes about an hour and a half to administer the medication, but he will have blood pressure checks after two hours and again after four hours. Then, it's lab work multiple times a week for the first week and exams and lab work weekly. After that, infusions will be every three weeks, for as long as it is working and he can handle it. We are thrilled to have this clinical trial available at Providence Portland at the exact time we need it! It is amazing!!

Dr. Taylor came in afterward and was eager to share with us more good news. The needle in the haystack was found!! This is INCREDIBLE!!! Dr. Taylor found out yesterday afternoon. The scientist found the T-Cells they were looking for a few days ago, but they retested to verify the results were correct before contacting Dr. Taylor. As soon as he heard, Dr. Taylor hurried over to share the news with Dr. Urba. They discussed the best strategy. While Mark is on the clinical trial, the T-Cells will be cloned, so there are billions of these fighters. The process will take several months, so it's a good thing there is something in the meantime. Also, the cells can be stored until needed. We didn't have much hope for this treatment because it is so rare to find the kind of T-cells that actually recognize and destroy the cancerous cells, but miracle of miracles, they were found!!! If the clinical trial doesn't work, it's on to the Clone Wars! 

Today we are much more hopeful! I'll admit that during this past week, I've wondered if we were getting close to the end, and we still could be, but more options are now available! Hallelujah!!!

Clinical Trial ALPN-202

Dr. Taylor is so much like Dr. Urba in his knowledge of cutting-edge research and his encouragement. Dr. Urba often told us that Mark could be the one to hit the home run. Even if the odds are low, Mark has often beat them with flying colors. 

We just finished our conversation with Dr. Taylor, so I will attempt to explain what we learned before we forget the details.

• The clinical trial that Dr. Taylor hoped for is available!. 
• Initially, he was told that Mark was not a candidate because he has had an adverse reaction to one of the immunotherapy drugs. The combination of  Ipilimumab/Nivolumab in the fall of 2019 wiped out his one remaining adrenal gland, causing adrenal insufficiency.  
• Dr. Taylor explained Mark's situation to the drug company that is responsible for the clinical trial. With Mark's excellent health, other than cancer, he received the green light. Besides, what do we have to lose?
• This clinical trial is "hot off the press," so there's no data on how effective it is, except for expert scientific data. However, Dr. Taylor is a research scientist and an oncologist in the field of melanoma, so he understands the science behind this trial. 
• It uses the CD-28 marker to turn on the switch to fire up the T-cells. This is a different approach than previous immunotherapy methods.
• Side-effects are the same as other immunotherapy drugs. The activated T-calls can attack organs like the kidney, liver, and lungs. The good news is that they can't affect the adrenals because they are already gone! 
• Current patients have had rashes and flu-like symptoms a week after the initial dose, but those symptoms have dissipated relatively quickly.
• The first dose will be administered in 2-3 weeks, so Dr. Taylor has prescribed other medications to manage the pain.
• The third-generation targeted therapy is also available, but it can't be used during the trial. If he started it right away, the trial would be postponed.  It will still be an option if the trial is ineffective or side effects prohibit its use.
• The TIL therapy that harvests T-Cells from the tumor is still in the research phase and has not been FDA approved. However, Dr. Taylor is hopeful that approval will come within the year, so it could be an option in the future. 

We asked the question, "How long would Mark have if none of these work? Weeks, months, or years?” Dr. Taylor quickly responded that it was more than weeks, but it would not be years. His best guess was 6-8 months, but of course, he is hopeful that something will at least slow down the growth and potentially do more than that. That is our hope, as well. 

Now, we'll move forward with Clinical Trial ALPN-202!!

We truly appreciate your love and concern!