Lovingheart

He had a pretty rough night.  He felt that one of the pills didn't go down properly but I think there may be a sore in his throat.  Add to that the nausea that is now surrounding him, and he is miserable.   He was zoned out for the first part of the day.  So hard to see.  He won't talk.  Doesn't answer anyone's question verbally.  Couldn't eat much.   We had an appointment to learn about going home with the insulin.  He brought his lunch along which he was to eat after getting the dose of insulin.  He barely ate anything and didn't acknowledge the people in the room. On the bright side his insulin was relatively low, reaching a week long low of 8.8 in the afternoon.  But that was because he had hardly eaten anything. So not really so bright. When we got back from his appointment, he had a nap then a friend showed up.  They chatted while I walked some laps with the mom.  Nice to catch up. Again supper was not good...

Before we came to hospital, the evenings were the worst part of the day for Marlon.  He was exhausted and felt ill but didn't want to go to bed too early.  Now the mornings are hard.  He wakes up grumpy.  Add to that the issue he has been having for a few days and it feels worse.  The sound of his breathing and talking are excruciatingly loud and painful to him.  Something called Autophony.  One of the nurse practitioners asked around and figured it out.  A new condition to many here.  There are times when he can speak normally but mostly he is whispering or speaking very quietly. He also had a dentist appointment today.  We drove there.  It was set up because he had pain when he was newly admitted.  As expected his teeth are not in good shape at all.  I was just about to set up dental appointments for Marlon when he got sick.  Now his counts are too low to have work done.  We shall see.   We had a zoom...

I sit here as he sleeps on after the LP (lumbar puncture), and my eyes fill with tears, and I think how we are back here again.  In some ways we have slipped back into the hospital routine but it is not the same. The past couple of days Marlon's spirits have been a bit lower.  He figures he is missing out on at least a year of life.  He was at a certain place and now he isn't.  He is sad for the life he lost and worried how far behind he will be on the other side.  And he feels bad physically.  He can't really say how, just bad from head to toe.  When people ask how he is, he struggles to answer. He is five years older this time and has a much deeper understanding of life.  He worries about the future.  How will he find meaningful work that he can support himself with?  To be fair, that is a question haunting many people nowadays. His weight was down another kilo and his blood sugar is still all over but he did get down to 14 at one poi...

The big focus is on Marlon’s blood sugar.  Normal range is 4-7.  At first when they noticed his levels were high (when I was away on Saturday), they were at 17.  Since that time, the lowest they have been is 15 and the highest is 25.9.  He is peeing so much and they wonder why he is still losing weight.  He has now lost over 10 kilograms (22+ pounds) in 3 days.  Both the steroids and the chemo he had yesterday affect the ability to deal with glucose but still they keep injecting more insulin into him and his blood sugar levels are much higher than they should be.  I don’t get it.  But I do.  It seems that already the leukemia is weakening and going away so these drugs are working for their intended purpose but all the other side effects are popping up. Yesterday after the chemo when Marlon felt so bad, we sat together for a while and then he fell asleep so I went out for a walk.  A longer walk and I spent a good while watching a hawk aft...

Yesterday morning, I was woken up shortly after 6 am by the fire alarm.  Lying there listening and then the message: Code Red - Mechanical Meds Center - Zone 21 Okay, so it isn't a false alarm.  What happens?  I assume I don't need to worry.  Everyone outside the room seems pretty calm.  The fire trucks come along.  Luckily Marlon slept through a couple of hours of the alarms.  Eventually came the all clear message.  I think I heard it was just smoke from something.  A lot of precautions are in the structures and doors to make sure that fire does not spread easily. And today Marlon lost another 4 kg.  All the stored water and then some has been peed out of him.  His blood sugar continues on the high end even though they regularly inject him with insulin.  It is the steroids that are playing havoc with his sugars.  It just seems so crazy to give more and more drugs to combat side effects.  However we trust they know wh...

We were laughing last night. What a treat. The steroids are kicking in and Marlon is wired. Lights out and his brain kicks into overdrive. His self diagnosed ADHD brain is super charged on speed. Some of his questions: Anabolic steroids vs medical steroids - difference  What does LED stand for Mathematical formula to calculate buoyancy  Mathematical formula to calculate air pressure  What is lung capacity? There were more but then he kept his ramblings inside. I suggested he should use some of this ramped up brain power to do some school work, especially math but I wonder if it might be too erratic to concentrate. Since being admitted Marlon has gained 6 kilograms. All is water retention. His IV is constantly dripping in liquid plus he is still drinking but his body hasn't been able to process the liquid. Last night he woke up so many times in the night to go pee. He is looking more like himself. He had such extreme swelling in his face and neck which was partia...