Day 5 of Interleukin 2

This morning Mark was still suffering from the side effects of the two infusions yesterday--it seems like he's a one-a-day guy. His reaction was severe enough that no infusions were given today. Ian told me that along with the side effects he's already had, Mark now has neurotoxicity. Some of the toxins break through the brain barrier, causing agitation and confusion. That's when hallucinations often happen, but he still didn't see any bunnies! 

The nausea was so bad earlier today that he couldn't even tolerate a sip of water. Getting pills down was impossible. The normal nausea meds weren't working, so he was given Ativan. It caused him to sleep most of the day, but considering how miserable he was, that was a good thing! This afternoon, he ate some ice cream, and this evening he even ate part of his dinner, so that's huge progress. We're moving in the right direction, still hoping to go home tomorrow.

Dr. Taylor is actually surprised that Mark got 5 doses due to his adrenal insufficiency. The nurse explained that this treatment is like putting logs on a fire. It takes several to get it going, but once it's going, it only takes a log or two to keep it going. Because he doesn't produce cortisol, it didn't take as much to activate his immune system. Next time, his body will know what to do, so he will likely have even fewer doses. 

I may have mentioned before--Dr. Urba and Dr. Curti were both involved in the research and development of IL-2, and Dr. Urba ministered the first dose here some 25 or so years ago. They are experts! Dr. Taylor is learning from Dr. Curti. Our nurse today (and Tuesday) has been working with IL-2 patients for about 10 years. She is amazing--competent and kind! 

This is the ONLY hospital where IL-2 patients stay in regular rooms even when they develop severe side-effects. such as Mark had when his blood pressure dropped so low. Typically, when that happens, the patient is sent to the ICU for intravenous phenylephrine (NeoSynephrine). Here, the cancer unit nurses are trained to administer it, so going to the ICU was not necessary. We are so fortunate to live close to this Cancer Center. People come from all over the world to be treated here. 

How we appreciate the love and support that we have received from so many. Your prayers are making a difference! Our wall is getting full of notes, photos, artworks, etc., from our family--just a little room left for tomorrow! 

Day Four of Interleukin 2

 Good news--we both slept better last night. Without the blood pressure cuff, he was only awakened every two hours instead of every 15 minutes! Our daughter dropped off a mattress pad for the fold-out chair and a noise machine. Between the two of those, for me, it felt like heaven! 

With his blood pressure back to normal, he was given the 7 am infusion. Side effects weren't quite as bad this time. He didn't even get the severe shakes. Medicine helped nausea, although it never goes away completely. So...around 4 pm, he got another dose of Interleukin 2. This time it really whomped on him. He shook violently, but it's still amazing to me how fast the Demerol calms him down. It leaves him worn out. Then the vomiting and diarrhea started. Medicines helped, but he feels awful. For the past hour or so, he has been able to sleep, which is a blessing. When he wakes up, he's groggy and always nauseous. His skin is getting redder, and he looks puffy everywhere because of water retention. It's a lot to go through. Of course, it's definitely worth it if it helps the tumor go away! This time we were anxious because we didn't know what to expect. Next time, we will know, and it could be harder for him to know what he has to endure. We hear that each time could get a little worse. He's a trooper, though, and will get through this! 

Only one more day of infusions, and hopefully, we can go home on Saturday. Some of the side effects go away quickly. Others linger, and he will be exhausted, but it will be nice to have a three-week break!  

On a rather humorous note, one of the side effects that must be rather common is hallucinations. Ian mentioned that I shouldn't be alarmed if Mark saw bunnies hopping over the bed. Mark was rather taken back by this and wondered, "Bunnies, why bunnies?" When the doctors, Ian, Roxanne, and the nurses were here yesterday morning, they asked if he had seen any bunnies. Mark asked, "Why bunnies?" Dr. Taylor explained that people saw different things. Some saw floating flowers and clouds, while others saw scary spiders or bugs. So why did Ian say bunnies? Evidently, two of his recent patients mentioned bunnies! That doesn't sound so bad, but for Mark, it's not so pleasant. For years he had nightmares about bunnies. When he was young, he raised rabbits--lots of rabbits. He and his dad had built a condo of cages for them. One day he cleaned them up to show some guests who were visiting that evening. When he took the folks out to see the rabbits, to his shock and disgust, there were lots of new-born bunnies on the wire, getting smashed by the rabbits. Somehow, he had missed keeping track of the day the mothers were to give birth. Typically, he put the mothers in hutches with straw, and they made a soft nest with hair plucked from their chests. Several mothers had given birth to bunches of bunnies that evening, on the wire. It was a grotesque scene, and Mark had the awful task of cleaning up the mess. For years he had nightmares of bunnies bouncing on the ceiling, asking him why he killed them! So, he doesn't really want bunnies jumping over his bed! So far, none have!!

Day Three of Interleukin 2

After posting last night, Mark's blood pressure dropped to 70/46. Three bags of intravenous water (bolus) did not bring it up enough, so he has been on Phenylephrine since last night. A blood pressure cuff was placed on his arm, which tightens every 15 minutes. That made for a less than restful night's sleep. Besides that, all vitals are taken every two hours. Sleep and hospitals do not go together! 

Because of the blood pressure issue, no infusions have been given today. He has had 3 so far, which Dr. Taylor is actually pleased with. 

Today he has been able to eat a little more and was perky for a little while, although it didn't last for very long--just long enough to open today's cards and notes from our family. Nausea still comes and goes, as well as other flu-like symptoms--achy, weak, feverish, and digestive tract issues. Besides the red glow on his skin, he is now looking a little yellow from jaundice. Tonight he is feeling quite sick but hoping to sleep as the cuff came off at 10:30 pm. 

I'm so thankful I can be with him! It breaks my heart for those who cannot be with loved ones. 

Day Two of Interleukin-2

I thought I might not write everyday, but it's a good history for us, so here's what happened today.

Written at 11:00 am:

Mark's response to the first dose of Interleukin-2 yesterday was enough that the 11 pm dose was not given. Dr. Taylor explained this morning that he expected this outcome because Mark does not produce cortisol (side effects of the treatment over a year ago that affected his pituatory gland), resulting in a stronger immune response. Besides the nausea and rigors (extreme chills and shakes), his heart rate increased and his blood pressure (top number) dropped to around 88. Below 85, intervention is needed to keep it from going any lower. He didn't need that, but they determined that another round of IL-2 would not be wise until his blood pressure was higher. If a dose it dropped, they prefer the one at 11 pm. Patients fare better during the day, and if there is a major problem, there are less doctors and nurses available at night. Another problem is that his creatinine levels ramped up in his kidneys, so that is being monitored, as well. 

He was finally able to rest through the night, except for routine check-ups every couple of hours. This morning he was stable enough for his 2nd dose which was given at 7 a.m. He hadn't eaten anything yesterday after the IL-2. This morning he was able to eat 4 small bites of breakfast before side effects kicked in. Almost exactly an hour and a half afterwards, he developed rigors again. This time warm blankets did little to help, so a dose of 25 mg of Demerol was given through the IV which went straight to his blood stream, calming him in seconds. That was amazing! 

We were concerned that with missed doses he may not get the immune response needed to fight the cancer, but that is not the case. Because Mark's immune system is responding so dramatically, he may not need as many doses to do the job. Some folks need more doses to create an immune response. So, while 14 doses is the maximum. no one gets that many, and it is possible to get as few as three in one round, and still have a positive outcome. It is likely that his body will react even more quickly the next time we come to the hospital for IL-2. The T-cells know what they are supposed to do so they jump into action as soon as they get the message to go. 

The doctors and nurses are spectacular! Each nurse has been competent and kind. Most have worked with IL patients for years so they know what to expect and how to alleviate side-effects quickly. 

Written at 7:00 pm:

There was a pow-wow this afternoon with a team of doctors to determine if Mark should have the next dose. The decision was YES, so the 3 pm infusion was given. Just like clock work, an hour and a half later, the shakes began. So...the magic number is an hour an a half--we can count on it. Nurses hurried in with warm blankets and Demerol. Within seconds the shakes stopped again. A mild headache has continued, and he is nauseaus. No dinner, for sure, but he is drinking a little. Oh, and his skin is getting red like he has been out in the sun, and he is running a low grade fever. His blood pressure is right at 85 so he got a bolus (literally a bag of water given intravaneously) to help raise his blood pressure. It brought it up to 88. He can get three bolus before medication is required. 

Mark doesn't feel great, and he sleeps most of the time, but it has been better so far, than we thought it might be. We don't find out until 9:30 what the doctors will determine for the 11 pm dose, but we feel quite confident that it won't be happening which will make for a better night's sleep! 

Oh, there's one more thing I forgot to write about yesterday. When we picked up the Daily Joy book that was in our special box, we opened to the page with the ribbon bookmark. Rachel assured us that she had not placed it there. This is what we read:

DOUBT NOT, FEAR NOT

"Look unto me in every thought; doubt not, fear not." (Doctrine and Covenants 6:36)

"Our focus must be riveted on the Savior and His gospel. It is mentally rigorous to strive to look unto Him in every thought. But when we do, our doubts and fears flee . . . Faith in Jesus Christ propels us to do things we otherwise would not do. Faith that motivates us to action gives us more access to His power." 

Our theme has always been "Fear Not, I am with Thee, " so we felt that it was there just for us. 

With love and appreciation,

Ane & Mark