3-17-2012 (Saturday) – Rory
Today has been filled with lots of ups and downs.
Last night after Preston was able to head home, my night was filled with visits from doctors and nurses, and not much sleep. Because it was my first night there was lots of info to be gathered, labs to be taken, etc. Vitals/meds were also planned to be taken every few hours.
The other challenge to not getting much sleep was the fact that my roommate and her daughter's choice of language and viewing material left MUCH to be desired. They chatted, swore (a lot), had cell phones ringing and 2 different TV's on – ALL night. When they did finally go to sleep (snoring heavily) I finally actually had to ask Nurse A if he would turn off the TV's because the screaming in the movie had infiltrated my REM and had jolted me awake from a nightmare and brought on a heavy hot flash. Not cool.
Slowly through the night results came back from ER tests and as things were ruled out, new hypotheses were created. It was about 1am when I got another visit from the 2 attending doctors. Seems they were able to conclusively rule out the cardiopulmonary concerns that seemed to jump out at first. They both asked me lots of questions about chemo and eating and tummy issues. The going hypothesis is that the chest pain was caused not by my heart, but by my esophagus and tummy. Theory is that the mouth sores that erupted last week most likely also ran/run down my throat and esophagus, causing it to spasm and constrict. That tummy acids and such could be also contributing.
They wanted to see if they could put their theory into practice and ordered some new meds to go ahead and try. One is similar to Zantac, and is used for calming/eliminating heartburn/acid reflux. Another is to coat the lining of the stomach. A 3rd one is a lidicane jelly that will coat my throat, esophagus, etc AND numb it at the same time. The 1st two meds are just easy to swallow kind of thing. The viscous lidicane is a whole other ballgame. It looks like a clear jelly, and feels like slime, and tastes like old fashioned cough syrup – big YUCK! It is also hard to get down at first. A cute little IV nurse just happened to be drawing labs when Nurse A had me take the VL. I knew it would numb things, but I didn't anticipate not being able to feel my mouth or be able to swallow really. It numbed everything alright, and in helping it also presented its own challenges. The IV nurse was great and she sat with me, making sure I could get some water down and talking calmly to me while it finally worked its way down and I was able to feel myself swallow/breathe again. Sheesh, that was way more adventure than I had planned on. Hoping it is worth it.
About 130am I got a surprise phone call from Jill. I teased and asked her what she was doing calling me in the middle of the night and didn't she know it was the middle of the night? She had done double shifts and was calling to check on me since she wasn't quite able to check in with preston about details. We didn't chat very long and I made her promise to get LOTS of sleep and I promised to call her should we need anything at all.
The rest of the night was spent mostly drugged, but not really sleeping at all. My neuropathy has increased in severity and my hands and feet, along with a few other things, have been very painful. Thankfully, it looks like we have found a new pain med that I tolerate well (fentynol) and Nurse A made sure that I stayed as comfy as possible. Towards morning we realized the smaller dose, though relieving things, did not eliminate the pain. Nurse A gave me a double dose and for the first time in weeks I was not in any pain and I was able to finally sleep for several hours.
The "changing of the guard" happens every day at 7am and 7pm. Nurse A went off, and Nurse D came on. She is cute, and quiet and soft spoken. I know I am going to like her a lot.
Since the night was really so crummy, I actually spent most of the day just so happy to finally be managing the pain and working with new meds, and catching up on some sleep.
Late morning finally brought the arrival of Dr L on her rounds. She grilled me and asked tons more questions on top of the ones the doctors had asked during the night. She particularly asked a lot about my stomach and eating and such. I guess a pow wow of doctors has come up with a more solid conclusion about my chest pain. Good guess that even though there aren't mouth sores anymore, there probably are down my esophagus and such PLUS probably getting acid reflux coming up the other way. Between the two, it is no wonder I was in so much pain. Dr L advised to continue current meds. She was getting ready to leave when I told her I needed to call Preston and asked her what the plan would be. She said they would continue to monitor me, continue meds and would re-evaluate in the morning. RATS! That totally was unexpected, and I did my best not to get emotional about having to spend another day/night at the hospital.
When I called Preston he was all excited that I was calling to let him know I could come home. I don't know which of us was more disappointed when I told him I was going to have to stay. I especially was struggling knowing that he was at home with super sick kiddos and I was not there to help at all. We talked about sending someone down to bring me personal things I would need, esp not knowing how long I might be staying. It was hard to hang up the phone knowing that we each needed the other so much and yet there was nothing we could do about being separated.
The rest of the day was hard. I was extra tired. I was feeling extra lonely. I had been having little bouts of setting off the heart monitor for no apparent reason. I was still experiencing a lot of pain in my hands and feet from the neuropathy. Nurse D was able to help me stay comfy with meds and she also brought me something called ALPS. Not sure what that stands for, but essentially it is a set of braces that wrap around my calves and shins and then massages my legs as air pockets alternate inflating and deflating. I was pleasantly surprised that it actually helped my legs feel tons better and really helped relieve the neuropathy pain.
When evening came it seemed the day was just never going to end. Every hour seemed to just drag by. I got a wonderful surprise when one of the nurses knocked on the door to ask me if I wanted to have visitors. Standing there in the doorway was Jill and Christy and it couldn't have been a more wonderful gift. Jill plopped onto the end of my bed and Christy pulled up a chair and we started in on a wonderful visit. Jill was so bubbly as she shared her experience of taking the 3 healthy kiddos to their belt testing. I think she enjoyed it as much as they did. I noticed that Preston had sent a personal bag for me, and I asked her about it. She started giggling before she could even tell me anything. Apparently she was at the house when Preston and Kaeli were packing my bag. Preston turned and asked Jill what else she thought I might need. Jill browsed through her purse and said "How about a hairbrush?" – well, she didn't get any further in her story for awhile because I started laughing – hard – and couldn't stop. Jill continued her story while I continued laughing. Apparently Kaeli's straight faced response to Jill was "Um, she doesn't need a hairbrush." and it took Jill just a second to realize what she had suggested – Well, that did it. I was in a solid, raucous, hysterical laughter by this point with tears just running down my face. Just when I thought things couldn't get any funnier, Nurse D came running in to check on me because my heart rate had skyrocketed and had set off the monitor. She came in and found the 3 of us all in a total giggling fit like we were little girls. When I realized what she said why she was there, it just set us all off again. A fun surprise was that she and Jill knew each other well and Nurse D joined in our laughter and gave Jill a "scolding" for getting me all worked up. Oh, I am so glad that she did. Having Christy and Jill there to chat and catch up and just visit was wonderful medicine for my whole being.
After they left, Nurse D got me re-settled, and I was finally able to order dinner. The rest of the night I spent just suddenly laughing out loud because of the wonderful memories of the evening with 2 of my most favorite people in the world. I also had fun exploring the bag that Preston had packed and read his text reminding me he had packed something special – earplugs! SCORE!
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