We have had many people wondering what has been happening recently. Last weekend Preston posted that things were going ok, then everything changed.
Last Monday began a very long, difficult week full of complications from side effects and multiple trips to the hospital for me. Everything just came to a screeching halt, including posts, as we went back into survival mode and just took each minute as it came. I even had nurses so worried about things that they had to call my Dr. to get her input and recommends. Even she was unsure how to best help me, except to keep pumping me full of fluids and heavy meds via IV. I have just had everyone floored with my extreme reactions to everything and having some side effects appear that they cant even figure out. They are also concerned that I am down 2 more meds. My body has rejected 2 of the heavy anti-nause meds already, and I am not even half way through treatments yet. My nurse recommended I try a big dose of benedryll at night. Hoping it might knock me out enough to sleep, and possibly calm the nausea between the zofran, and maybe even calm some of the side effects. I am slowly working on increasing the dose to see where my threshold will be. Sleep is slowly improving and it did relieve one of the unexplainable side effects. Will just keep working at it and see how things go.
One bright spot in the midst of all of our challenges has been that I have been able to eat. Mouth sores erupted again last weekend, but the severity was less. I have been able to handle very soft foods, and smoothies. I have been so grateful to Sis D for taking time to come and teach us about foods and how to best get them into me. Her expertise and talents have been a lifesaver for me. Thank You Sis D! You are AMAZING! I was also extra thankful to my brother for his outstanding gourmet skills and for the soft foods he cooked that I was able to eat, and even enjoy! THANK YOU for doing all of the cooking and for taking special time for us!
The last couple of days have been better. I have been able to get around, slowly, on my own sometimes. That has felt nice after having to have someone right beside me whenever I have needed to get out of bed. It has been extra, extra hard this last week to need to be treated like a little child. I have been able to do very little for myself, even basic things. It has brought many tears to want to do things for myself, and be completely unable to do so. I am still working through allowing myself to let go of all control, it is still a work in progress. Fatigue is still hanging on in different stages of severity, along with some side effects that continue to be bothersome. I try hard to listen to my body, though, and make sure that I just head back to bed whenever I start feeling extra yucky. I am hoping that the next few days will allow me to be up and about more, esp knowing that we are totally on our own this week.
I have a Dr. appt tomorrow. I will be seeing the on-call Dr since most of the Dr's, including mine, are all off this week. I guess we will see what he has to say about everything. If everything goes ok this week, I have chemo scheduled again for Friday. We will try to keep everyone more updated during this next set.
I am hoping, as I am feeling up to things, that I can post some fun stuff this week too. The kids have taken lots of picts of all of their different activities, so hopefully we can get those posted with some fun news soon.
Thanx to all who continue to help, serve, and love our family. It really means so much.
{Preston update}
My parents were here all week, knowing this was supposed to be one of Rory's "bad" weeks. It was a great help to have them here. We felt bad that mom, then dad, both got sick. At least we were able to have them both with us on Saturday when we did our Christmas celebrations! My sister and her family stopped by for dinner and games that evening.
1 comment:
Dear Rory - I am so sorry you are experiencing such terrible side effects. Our love and prayers continue to surround you and yours. I had no idea how bad things had gotten and can only pray you will know I am here for you as much as I physically can be. I pray you know that calling, texting, carrier pigeon or whatever if you need or just want to talk - and you feel would be helpful - I really am here to "drop" everything I could possibly drop and do what I can do. I saw you from far away on Sunday and tried so hard to get over to you to just say Hi - I could not believe you had come out despite all you are going through. You obviously love your Father in Heaven and please know your ward famly LOVES you - Jill
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