The Topotecan sickness hit Tuesday, and Karen had many of the same side effects as previous medications. There was the same queasiness, extreme fatigue, sleepiness, etc. Since she took some of the anti-nausea meds prophylactically there were fewer cookies being tossed.
Another big change over the last week has been with pain management. She has to use Oxycontin to control the pain, instead of Advil. For the most part Karen would prefer the Advil, but her kidneys are having a bit of trouble, so that’s not an option right now. Oxy comes with its own set of side effects, but at least helps with the pain. She’s taking a small dose right now. Karen was resistant to the idea at first, but nothing less powerful was helping. She’s built up some tolerance to the pain, and won’t medicate it away, but is being better about it. One doc asked her if she was in pain, and she said no. He then asked her to rate her pain on a scale 1 to 10, and she said 4. Imagine for a moment what it must be like to feel that a pain level of 4 is what it’s like when you’re not really in pain.
Another thing helping with the pain is our ability to relieve some of the fluid buildup at home now. We set up home health to help with that, but actually do it ourselves. Mostly we wanted to set up home health now, in case we needed them later. They’ll stop out each week to take vitals and make sure everything is going smoothly. They also interceded with the medical supply company to help us get supplies faster. If possible, avoid using Edgepark Medical. Wow, what a terrible company to work with. I’m going to have to find an alternate source for the supplies.
About the home health… The home health nurse is good, lives very close to us, and Karen is comfortable with her. Mount Carmel set us up in their system a couple years ago for something else, and we reached out to see if the same nurse was available before choosing a home health provider. I mention that because Karen and I have professional and personal relationships with people in the industry, and we don’t want anybody to think we chose to reach out to “somebody else” for other reasons.
We’ve also had an array of friends and family reach out to offer help with this. It means a lot to us. We’ve needed to reach out for help caring for the cats and the house, and maybe a few little things, but not much else so far. There may be things we need help with at some point, but there isn’t anything right now.
Thank you for thinking of us!
Keep me in mind for any and all needs or wants. I will even do windows! Stay strong my darling daughter. I love you tttttt hhhhhhh iiiiiii sssssss mmmm uuuuuu cccccc hhhhhh?
Stay strong!
Love and prayers are with you both constantly.
I am available to help in anyway! I can do dishes, yard work, or run errands. Hope you remember me but I am your forklift lady. I check for updates weekly and know that I’m only a call away.