Bouncing Back

Mark has bounced back much faster this time. His energy is returning, he doesn't have the incessant itching, and the pain in his muscles and joints has not been debilitating. Of course, he wants to work in the yard, but his limit is about an hour a day. Otherwise, he's pretty much back to normal. We don't understand why it's better this time, especially since this cycle was so difficult. Perhaps it's because he had a longer break before this round. No matter, we are thankful. Also, the pressure he noticed in his abdomen has subsided, so he assumes the tumor has shrunk. Now, we hope it goes away! 

The next treatment starts Monday, April 5th. After this round, he will have a 5-6 week break before the last two cycles. Dr. Taylor said that he could get a Covid vaccine during that break. That would be nice as we have been ultra careful with him having contact with anyone but close family. 

We continue to express heartfelt gratitude to our loving Father for intervening so often in sparing Mark's life over the last nine-plus years. Early on, we felt impressed to ask for an extension of Mark's life, and received an assurance that it would be granted, although we didn't and still don't know for how long. Of course, we hope for many more years together, but we are well aware that the extension could end at any time. All we know for sure is the promise we have received that the Lord is aware of Mark, that his life is in His hands, and that he will not be taken before his time. Ultimately, none of us are going to get out of here alive! 

Our hearts ache for dear friends and family who have recently lost loved ones. We cannot imagine how deep their grief and sorrow must be. We grieve because we love. This quote says it so well, " The only way to take sorrow out of death is to take love out of life.” Russell M. Nelson

Home Again!

Mark's fever broke during the night, and his blood pressure stayed within range, so no meds were needed. This morning he was feeling much better, so Dr. Taylor gave us the okay for discharge. Woohoo! Our nurse helped Mark walk up and down the hall, and she took out the internal jugular center venous catheter. By noon, we were on our way. It's delightful to be home!

Mark commented that this last round was definitely the hardest so far, so that wasn't just my observation. But he weathered it well. The next round will start on Monday, April 5th, so he's got two weeks to regain some strength. He is pretty weak, so he uses a cane to get around. Nausea and mild chills come and go, and he doesn't have much appetite. Last time he wanted Mexican food as soon as we got home. The most consistent pain is in his upper arm muscles. Muscle and joint pain is another common side effect. So far, the itching has been minimal, but that often comes later. He says he feels like his body is aging overnight. It could be much worse! 

Round 3 of IL-2, Day 4

With no infusions yesterday, Mark was feeling much better this morning. He was even teasing the nurses. Because he was still fairly sick last night, the doctors opted to wait on the 7 am dose until they saw him. When they came, they were pleased with his mental clarity, and his vitals were good, so the 3rd dose was given at 9:30 am. 

Several days ago, I made an appointment for a Covid vaccine at 11:00 am at Walgreens, just 5 minutes from the hospital, thinking that should be a safe time to leave. Now, with the later infusion, his chills and rigors started just as I was ready to walk out the door. What timing! Fortunately, the nurse was here and got hot blankets on him right away. When I returned, he was pretty drugged, but the nurse told me that it was even worse than the last one. He shook uncontrollably, and it took 3 doses of Demerol and a dose of Dilaudid to calm him down. He also needed oxygen. 

The rigors have come and gone throughout the day. That has never happened before, and his fever spiked to 102.5. Fortunately, he has slept through most of it. When he does wake up, he tries to talk, but even that is an effort. After a sip of water, he sleeps again. So far, his blood pressure is staying up, but often that comes later. Last time it was 12 hours before it dropped into the ’70s. 

The team indicated that this will be the last treatment for this round. It is common for the immune system to respond more quickly and with more intensity with each successive infusion. The first week in the hospital, he had five infusions, the second time, four, and this time only three, but overall he has been sicker. That is exactly what they expected. 

We could possibly go home tomorrow since there won't be another infusion, but he has to make a lot of progress for that to happen. I'm thankful that he can sleep and pray that he can get through the night without much difficulty. I wish I could do more to help him, but the nurses have been fantastic! 

Round 3 of IL-2, Day 3

 Around 4 am I awoke to the CNA urgently calling out to the nurse, "77/43 and 78/44, I checked twice!" A flurry of activity followed as the Phenylephrine was brought in, hung on the IV pole, and tubing attached to the "Internal Jugular Central Line." (I wanted to say it again! 😀) That meant that the blood pressure cuff was put on his arm. Mark is a light sleeper and does not sleep through the tightening of the cuff every 15 minutes. So, no more sleep for him! I should add that he continued to be dizzy and nauseous.

The medicine did its job in regulating his blood pressure, so it was stopped around 10:45 am. The cuff is supposed to stay on for 2 more hours. Mark was tired and eager to sleep, so at 12:45 pm, he took the cuff off! Of course, a nurse came running. She put the cuff back on and rechecked it. This time the systolic pressure was 86 -- much lower than it had been all morning. Oh no! Mark questioned the validity of that reading, as he thought the cuff was too low on his arm. She said she'd check again in a few minutes. That's when prayers get specific -- "please let the systolic at least be in the '90s!"  I watched as it registered on the screen ending in 96/45. YEA that would do it! The cuff was removed. I requested a "Do Not Disturb" sign which she graciously posted on the door. He slept the rest of the afternoon. 

When the team came in this morning, they were somewhat concerned about his liver and kidney functions as indicated by the creatinine levels. Another blood test was done at 2 pm. Heather, our nurse, heard back from the team that the 3 pm infusion would not be given as the creatinine levels were slightly elevated from earlier. I had noticed how yellow his skin was, and his face and hands were getting quite puffy from fluid retention. 

This morning they also asked Mark about his vision and his ability to focus. Mark had noticed that his vision was a bit fuzzy, and it definitely took too much mental energy to read a text or an email. 

We just heard that there will be no infusion today, but likely one at 7 am tomorrow. That should give his body enough time to regulate. It's crazy what this stuff does to the body, but if it works, it's worth it! 

Round 3 of IL-2, Days 1&2

Yesterday morning we met with the team of doctors at 7:30 am - standard procedure.  Mark had the central line catheter placed, and we learned the proper name, “Internal Jugular Central Line”--that sounds more ominous, don't you think? 😉 I like it! 

Each time IVs were given through this line, the machine would beep, indicating that the flow had been disrupted. Finally, the nurse concluded that there was a kink at the site, which had to be repaired.  It took several hours to sort out, so his first infusion wasn’t until after 4 pm. He never got chills and felt quite normal for most of the evening. That comes with another set of worries. If nothing happens, his immune system is not reacting, which means it is less likely to recognize the cancerous cells. Finally, around 8 pm, nausea kicked in. During the night, several different meds were used (Zofran, Ativan, & Compazine) to control nausea. Nothing seemed to help. When the doctors came in, he was miserable with nausea, dizziness, body aches, fever, and he was quite agitated. Even though his vitals were fine for another infusion, the doctors would not give one with him feeling so awful. After more Zofran and a Bolus were given, he calmed down and finally slept peacefully. (A Bolus is a bag of IV water to help control blood pressure.) 

He perked up enough in the early afternoon that the doctors were willing to administer another infusion if Mark thought he could handle it. Of course, this is why we are here, so he was in agreement. At 3 pm, it was given. Typically, if he has chills, it doesn't happen until an hour or more after the infusion. I decided to take a walk while he was napping. Unfortunately, I went into what I thought was an inner courtyard. It was not, therefore, the door locked behind me, and it took me at least 15 minutes of walking around the building to find an open entrance. When I got back to the room, he was covered with blankets. The nurse had been there when the chills started, so she got warm blankets right away, but they weren't enough this time. The rigors were worse than any he has ever had, and it took several doses of Demerol to get it under control. 

His blood pressure started dropping and got to 85. If he goes below that, he will need Phenylephrine, which requires that he wear the blood pressure cuff that checks his BP every 15 minutes. He really does not like it because he wakes up every time it tightens on his arm, so he gets no sleep. Another Bolus was given that raised his blood pressure enough that he hasn't needed the "Neo." ("Neo" is short for "Phenylephrine.) We hope he can get through the night without it. 

He continues to have nausea most of the time. He tries to be a good sport and stay positive, but he is quite miserable and feels trapped when nothing seems to help. We believe in the power of prayer. When the medications are not helping, I whisper a prayer in his ear, which seems to calm him down. How thankful we are for ministering angels that come to his aid. These nurses are angels, as well. They are so kind and caring. We appreciate the prayers and positive thoughts that are sent his way. We know it helps. Thank-you!

On to Round Three!!!

Since the last post on March 1st, Mark started noticing pain in his abdomen. Ugggg!  A couple of days before he told me, I had expected it, as he had flinched when I snuggled up to him. He didn't tell me right away, as he wanted to be sure it was the same kind of pain as before. It was, so it seemed that the tumor was growing again.

This past week has been rather intense, waiting for the CT scan today. If the tumor in his liver was larger than when the last scan was done, it would indicate that this treatment was not working, so he would not continue with the next round. That would NOT have been good news, as there are NO other options that could be durable--just some stall drugs that might help for a while. He's been through all available treatments for metastatic melanoma. Of course, research is always being done, so perhaps in the future, there will be other options.

Mark had the scan this morning and met with Dr. Taylor this afternoon. He indicated that the tumor was about the same size as it was in January. Mark mentioned that the pain had gone away and then returned just recently.  As Dr. Taylor looked closely at the picture, he indicated that it seemed to be a different shape. To us, this seems consistent with the tumor shrinking and growing back again. 

When Mark had the PET scan in December, he did not have any pain. By the time he started treatment in January, the pain had been constant. The CT scan showed that the tumor had grown 4 times its size in one month. It was growing FAST!!! Obviously, the treatment helped! If it had stayed on that trajectory, life for us would be very different right now.

Dr. Taylor wants Mark to start the treatment as soon as possible -- like this coming Monday, the 15th. We are all for it, as we don't want that tumor to grow anymore! 

How we appreciate the prayers, love, and support that we have received. THANK-YOU!!!

Feeling Better

Well, the yard is not all cleaned up but much better. We can at least walk through the backyard without tripping over logs and tree limbs. In total, we lost five trees, and many are sadly reformed from their normal shape. The tree service we were working with before the ice storm is scheduled to be here in a month, but our landscapers worked an extra day and got most of it cleaned up. Power is such a wonderful thing; we are totally spoiled with all of our conveniences. I am grateful for a new gas fireplace that really put out the heat and a generator that powered all the frig/freezers, water pump, and electronics.

I'm feeling much better, but still not 100%. I tire easily, itch all over, and am weaker than usual. But all in all, not bad. The doctors say this is all normal and good. It means the immune system is working overtime. I'm starting up some small projects around our yard this week with some help, and we keep working on our personal histories. 

The pain in my liver seems to have subsided, which is where the cancer was growing. We assume that means the tumor is shrinking. We will find out on the 11th, with a morning CT scan and an afternoon doctor appointment. If it is good news, we get to start up the treatments again, probably on the 22nd. 

Thank you for your wonderful support. It makes such a difference to have others cheering and praying for you. Thank you!