Since I am still not sleeping, I thought this would be a good time to go ahead and post a 2nd update from yesterday chemo appt.
I left off yesterday's post just shy of getting the last of my pre-chemo meds, including the IV Benedryl. My nurse held off giving that to me very last so that Colton and I could keep working on school stuff and get a good lunch in us. She did run it with a saline bag over a 15 minute window - I last 10 minutes before side effects kicked in. Way better than 10 seconds! And I was able to still sort of carry on slurred conversation even though I couldnt open my eyes...better than being completely out of it.
My first indication that it was starting to get to me was that Colton mentioned that I looked very sleepy. Just after that my eyes blurred and I got very groggy. I was still working on the other post and an email and a text. Was a bit tricky since I could barely see what I was doing. I fought it as long as I could and then we got colton settled with his blanket, pillow and the laptop for fun movie time. My nurse got me all tucked in with lots of warm blankets too, and that was that. At least for awhile....I ended up with an extra side effect that is called "restless leg syndrome" - except it was the whole left side of my body. Just involuntary muscle jerking, pretty uncomfy. I was able to open my eyes just enough to let my nurse know when she had come in to check my blood pressure again (which thankfully stayed low and solid). She said she it was the benedryl, but surprised it had shown up since I hadnt experienced that at all before. Probably that my body wasnt totally unconscious like I have been before. She didnt seem overly concerned but was bummed that I was so uncomfy. She was so sweet to help as best as she could. My left side finally settled down about 1/2 way through the meds, just to have my whole right leg pick up from there. It stopped after awhile and I think I did finally fall asleep for the last 1/2 hr or so. I was surprised when a new nurse popped in to help (my fave nurse is now the Ambulatory Administrator and they are training a new gal in her place to work the floor) when my monitor went off and she told me I was all done. Really? Not another hour+? Yep, I was really done. I think we were all surprised how, really, things went quite smoothly besides the restless leg reaction. Everything just seemed to fall into place and it was a calm, quiet go of things. Really nothing out of the ordinary that couldnt be handled or accounted for. It surprised all of us. Since I was done earlier than expected, and things were pretty quiet on the floor by then (still late afternoon), my cute nurse reassured us there was no hurry and we were welcome to stay and rest as long as needed until preston could get there to pick us up. That helped a ton, since I was really not in a condition to pack us up myself.
When I called preston, he was surprised too, esp that I was half drugged and still able to call him. He and John packed things up at the office and came and helped us get all packed up and ready to go home. They were both a huge help in getting us all ready to go, and having John there to help Colton and carry bags let Preston totally focus on me staying stable enough to walk out to the truck. Another tender mercy, wonderful kindness shown to us that day. John is such a good kiddo, just so thankful for all he contributes to our family and all of the support he has given over these last months too, in so many ways. He is such a blessing too.
Colton was as good as gold, which was a huge blessing considering that we had been away from home the entire day. He had been promised a special treat on the way home as a reward if he was extra good and worked on school stuff. He was quick to remind Preston that he had been VERY good while with me, and could we please still stop for his treat? That gave us all a good laugh. He was very excited to get on the road and pick up his "slug bug" game and get to eat a yummy blizzard. He is getting pretty good at that game. When we had picked up John yesterday AM, there was a parking lot a block away with 4 red cars all right next to each other. He was able to distinguish the curved top of the bug that sat between 2 other cars from that far away. He did an extra excited whoop when we drove by those cars and he discovered he was right. Kiddo never ceases to amaze me how his brain works sometimes in the most unique ways.
Another something I forgot to mention yesterday was a good laugh amid all the tears that were flowing. When we picked up John, I had checked email while we were waiting for him. A note from a dear friend who has become a sister just made the tears flow hard and heavy. Since we were in the truck, I started hunting for kleenex. In the beast, I keep them in the glovebox, so that is where I automatically started looking - except Preston didnt have any kleenex - what he did have, much to my surprise was his year supply of Altoids. I just looked at all those boxes and I started laughing and then couldnt stop. When I asked Preston about it, he told me it was the only place he could find to keep them. I laughed harder. I think he was relieved that I was laughing for the moment, instead of crying. It lightened the mood and helped me settle down a bit. I did eventually find napkins for what I needed. Just another tender mercy for the morning.
After we got home yesterday, I was still pretty out of it. Preston had to completely help me get inside and settled. Along with being 1/2 snockered, I also discovered that I was experiencing an extra heavy aching throughout my whole body. Everyone was pertty much settled at that point with Preston and the girls home for the moment. I went ahead and ran a hot bath, hoping to get to bed and to sleep as quickly as possible. I did get a bath, but the heavy hot flashes had also started by that time too, so all the extra heat just didnt work together. Sis BE had brought an extra yummy dinner. Preston was sweet to help fix me a small plate and I went and sat in the doorway of the mudroom where it was extra cold to try to eat. My tummy was NOT happy at that point - I am beginning to think that from a couple experiences with meals this week that dairy is totally out for me again - I did the best i could with dinner and then realized that I had been able to sit down, but I was not able to get back up at all. I had to have Caiden find Preston to come and help me. He was able to get me up and slowly guide me to bed. It was only 630pm, but I was totally and completely done. Thankfully, Preston and Kaeli were able to help little peeps and I was able to just try to get to sleep.
Unfortunately, because my tummy was really having issues by then, I only slept until 8. I have tried all the meds we have on hand, plus Preston prepped gingerale for me 2x. It is now 230am, and I have not been able to get back to sleep at all. My tummy is raging and I just cant seem to find any helps to get it settled. May have Preston go after heavier stuff at the store when he runs errands later this morning. Will see if we can find something. The big thing is going to be laying low on food choices again. It has surprised me how much eating has changed with each treatment this round of things. Food choices have become very slim and reactions have become very extreme. It has been frustrating that alot of the things I cant eat are the healthy choices. Things I think finally taste good have been the things I have reacted the worst to. Not sure what I am going to do from here. Eating can still be off quite awhile yet, because chemo meds will stay in my system even though I am done getting them. Hoping I can find some extra help and do some research in my special cookbooks. May just have to start completely over with little tastes of things, or even go back to just salads and basics. I have been so blessed to have so many varying food choices made available to me, to have food allergies put on hold for all these weeks. Just going to take a little extra doing on my part to try to find what will work now. Will take a bit of work, and help from others, but we will get it figured out. For now, I am just working on trying to stay patient with the tummy pain and the non-sleep for the 6th night in a row. Also, just trying to use this non-sleep to do something productive when I can. Just living in the moment and doing the best I can.
Things have already been extra rough. We are expecting things to continue to degrade each day, though extra thankful to have good plan in place for meeting all the surprises or the extra challenges. Will be sure that Preston keeps everyone posted as often as we can. So very grateful that we are done with chemo and that we can now look ahead to the next pieces that are falling into place. Still lots to do over the coming months, but good to know that even though these last 6 months have been the longest of our lives, they have also gone by so fast.
We are thankful to everyone who continues to give such wonderful support through everything. It has been a long, difficult road, and it means so much to know that there are so many who have been with us since the beginning and continue to stick through things no matter what is thrown at us. We are ever grateful to all of those who have given love, support, friendship and service to our family in so many ways. Even though we have not been able to thank everyone personally, yet, we are truly aware and very grateful to all.
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