Sunday, January 26th, 2014 - Nighttime is for
demons.
While the day time at the hospital is filled with light, activity, visitors, the night can be a very lonely and distressing time. The visits from the nursing staff continue every few hours which makes uninterrupted sleep impossible. I've never been a person who falls asleep easily and each time I wake up, I have to repeat the process. And now, there's much more on my mind than usual. To start with, the PICC line that was inserted the night before is bleeding under the bandage and soaking blood on my sheets. Along with my super high White Blood Cell Count, I have a super low platelet count which makes clotting a challenge. My gums are still struggling to form scabs from the dental work on Thursday and I continue to taste blood in my mouth. The nurse has to redress the entire PICC site which is a long process as they must take extra precautions to minimize infection at the site. It takes almost an hour but the nurse gets the area cleaned and a new bandage on.
Left alone in the dark, it was the first time that emotion really started to hit me. I cried. This was all becoming very real. I tried to search my emotions to determine what was making me cry. It wasn't really fear, as I feel there is only one acceptable outcome here. But when my thoughts turned to my family, it was hard to hold back the tears. Perhaps it was the thought of letting them down at some level. My wife and kids had all been in on Saturday afternoon to see me and you could see fear and uncertainty in their eyes, that's still hard to absorb - demons. As I let some emotion go I felt that it was probably therapeutic on some level, but then I found myself wanting to stamp it out just as quickly as weakness. I need to be strong for myself and for all around me. I'm not sure what the right answer is here yet, but both crying and being strong feel good.
Sunday morning was the start of the 'heavy' chemo which I was actually looking forward to. Bring out the big guns and let's get this on. Of course, other parts of my brain were concerned with the potential side effects; nausea, loss of appetite, mouth sores, fatigue, gout, hair loss - demons. Chemo affects everyone differently, but there were a lot of medications added to my regimen to head off these side effects. Before we got started, I was cut lose from the IV stand long enough to take a shower. I had only been here two days, but it felt hugely liberating to walk independently from the stand. I had to wrap my right arm in a full-arm plastic glove to protect the PICC site, but I was able to take a shower, very nice.
By 9:00 am the first bags were hung. You could tell the seriousness had gone up as multiple people had to come into verify the bags being hung off the IV stand. Serial numbers were read aloud and cross-checked with my wrist bands to make sure I had the right juice. Nasty chemical warnings were written all over the bags, and notes when up on my room door warning people on the outside that some serious shit was going down inside.
The rest of the day passed on an upbeat swing. I was finally in the middle of treatment, the pre-chemo drugs had already lowered by WBC to 185,000, there were no initial side effects, and I had plenty of visitors throughout the day. My wife, Joanne, brought my kids back in and we were able to play a round of Sorry. (A nod to irony.) Good for them to have something to do while in the hospital room rather than just stare at their sick dad. My daughters drew and colored a bunch of pictures and taped them up in the room. The one that said "Never lose hope!" brought tears to my eyes even during the day. Since my hair is going to be a goner at some point, I had them bring in a set of clippers and give me a haircut which I needed prior to this ordeal anyway. They settled on a Mohawk for starters which I thought was a fitting battle hairdo. Next week we’ll paint on the Braveheart face paint.
While the day time at the hospital is filled with light, activity, visitors, the night can be a very lonely and distressing time. The visits from the nursing staff continue every few hours which makes uninterrupted sleep impossible. I've never been a person who falls asleep easily and each time I wake up, I have to repeat the process. And now, there's much more on my mind than usual. To start with, the PICC line that was inserted the night before is bleeding under the bandage and soaking blood on my sheets. Along with my super high White Blood Cell Count, I have a super low platelet count which makes clotting a challenge. My gums are still struggling to form scabs from the dental work on Thursday and I continue to taste blood in my mouth. The nurse has to redress the entire PICC site which is a long process as they must take extra precautions to minimize infection at the site. It takes almost an hour but the nurse gets the area cleaned and a new bandage on.
Left alone in the dark, it was the first time that emotion really started to hit me. I cried. This was all becoming very real. I tried to search my emotions to determine what was making me cry. It wasn't really fear, as I feel there is only one acceptable outcome here. But when my thoughts turned to my family, it was hard to hold back the tears. Perhaps it was the thought of letting them down at some level. My wife and kids had all been in on Saturday afternoon to see me and you could see fear and uncertainty in their eyes, that's still hard to absorb - demons. As I let some emotion go I felt that it was probably therapeutic on some level, but then I found myself wanting to stamp it out just as quickly as weakness. I need to be strong for myself and for all around me. I'm not sure what the right answer is here yet, but both crying and being strong feel good.
Sunday morning was the start of the 'heavy' chemo which I was actually looking forward to. Bring out the big guns and let's get this on. Of course, other parts of my brain were concerned with the potential side effects; nausea, loss of appetite, mouth sores, fatigue, gout, hair loss - demons. Chemo affects everyone differently, but there were a lot of medications added to my regimen to head off these side effects. Before we got started, I was cut lose from the IV stand long enough to take a shower. I had only been here two days, but it felt hugely liberating to walk independently from the stand. I had to wrap my right arm in a full-arm plastic glove to protect the PICC site, but I was able to take a shower, very nice.
By 9:00 am the first bags were hung. You could tell the seriousness had gone up as multiple people had to come into verify the bags being hung off the IV stand. Serial numbers were read aloud and cross-checked with my wrist bands to make sure I had the right juice. Nasty chemical warnings were written all over the bags, and notes when up on my room door warning people on the outside that some serious shit was going down inside.
The rest of the day passed on an upbeat swing. I was finally in the middle of treatment, the pre-chemo drugs had already lowered by WBC to 185,000, there were no initial side effects, and I had plenty of visitors throughout the day. My wife, Joanne, brought my kids back in and we were able to play a round of Sorry. (A nod to irony.) Good for them to have something to do while in the hospital room rather than just stare at their sick dad. My daughters drew and colored a bunch of pictures and taped them up in the room. The one that said "Never lose hope!" brought tears to my eyes even during the day. Since my hair is going to be a goner at some point, I had them bring in a set of clippers and give me a haircut which I needed prior to this ordeal anyway. They settled on a Mohawk for starters which I thought was a fitting battle hairdo. Next week we’ll paint on the Braveheart face paint.
The other revelation we had was to bring in outside food to the hospital. Saturday night Joanne brought us some nice dinner and Sunday they brought in lunch. I could tell this was already a huge improvement over ordering off the cafeteria menu at the hospital. Don't underestimate the power of some good food for a loved one!
With the weekend running down and a new school / work week upon us, it was time to plan for the week. It seemed like the best thing to do for the family was for Joanne to take the kids back to Vero and resume 'normal' life. The routine would do them all good. Of course, that was a hard decision for Joanne, who just wanted stay with me and help me heal. We were still leaking out the news of the past few days to family members and close friends who were now experiencing the shock that we had been through.
By Sunday night I was still encouraged by the lack of ill side effects from the treatment and was still putting down normal meals. Maybe this would go smoother than expected. I feel like I was due some good fortune. Then I looked down at my PICC site, bleeding again! Another specialist was called in and had to redress the site again. This time he added a powder to help the blood clot. It seemed to look good, but I was growing concerned about how many times we'd have to go through this procedure, as the night returned, so had the demons.
I'm so glad you're doing this brian not only to keep all of us informed but for yourself. You may remember I kept a blog for Finn and I found it very therapeutic during the roller coaster of emotions that we experienced. I hope this helps you in the same way. I can also relate to your nighttime demons. When I was in the hospital for Finn I felt I could handle anything during the day but reality always set in more at night and I felt emotional and had a tougher time. Just remember its ok to have moments of weakness and fear. You are doing an amazing job so far. I'm so proud of your strength and positivity. Keep it up and know that we are all routing for you and know you can beat this. And keep writing. Your story is amazing so far.
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