Hi guys.
Just wanted to give you a heads up about my doctor appointments yesterday. It went well and best of all, I got to spend the day with my dad. 🙂 Ok, so not the greatest father/daughter date but the conversations were well worth the drive.
First, my MRI showed stable results. And while that is a praise, it is also a bit of frustration just because of the increasing side effects…mostly numbness/weakness/finger curling in hands, lack of bowel movement on its own and pressure in the neck. This means that the tumors are probably changing density or hardening–there is no way to ever know that but we just have to assume that something is still causing the pressure on the nerves even if they are “not growing.”
So, with my main doctor–we discussed all my questions and current observations about things I notice changing. We discussed again my two possible treatment options. I have a much to think and pray about in the next few weeks. I need to reread the papers my doctor gave me at the beginning of January and review the treatment side effects, talk with my parents and ask a few other questions to another doctor since I will now be on Warfarin blood thinner pills. Not saying that I will do treatments but not saying I am not either at this point. I just need time to really think and pray about things, as yesterday my mind was a bit overwhelmed. Sure, I got all my questions answered, but left with a full mind…because it is my choice; my doctor is not telling me what to do–so I want to be wise in the decision-making process.
As for everything else we discussed, here is a short synopsis:
I am on the last 2 weeks of the steroids. I started today as the first week where I decrease the amount taken everyday. The following week, I go every other day–then I am done and off the pills. One less pill to take in the morning: YAY 😀
Today, I started taking Warfarin (pills) with my Lovenox. I am officially starting the transition off the Lovenox shots! YAY. 😀
I saw the pain team again. Because I am on such a low dose of Lyrica, they added one more tablet a day to see if that helps with the tension and numbness I am having…especially the pain in the neck area. We also discussed different stretches for me to do to help loosen my shoulders. I also need to work on my posture and keep my chin in when sitting or standing as that is all related to the shoulders and posture. Time for me to get back into stretching exercises in the morning and also, I am going to restart on my own the physical therapy exercises I remember to help get my left leg muscles back to working.
A day like yesterday can be long, strenuous, and mass information–but I like my doctor team so much that it is like talking to friends. They let me ask my stupid questions, laugh with me as I share stories and offer encouragement when I am frustrated (or crying). I am so thankful for all of them.
And that ends my January chapter…one month of the new year down–11 more to go. 🙂 Thank you for all the support and prayers for me and my family…I am so thankful for you too.
More to come…
My Life with NF2 
Praying for you as you sort things out and process all of that information!
Thanks Aunt Tanis. 🙂
Glad you will be off those stomach bruising shots soon! Also glad you’ll be off the steriod pills. Hang in there. We will be praying for you about all your decisions. I am sure it has got to be pretty overwhelming! Love you.
Thanks Sheri! The bruises are finally starting to diminish… 😀 I am hoping by the end of next week, my stomach will look mostly normal again.
Praying for you in your decision making. It’s tough, but God will direct you. Love ya!
Thanks Kim. It is tough. It is like taking a true/false test…only being able to pick one and I always hated that. That is why I want to be extra alert about my options and such. Haven’t had much time to sit and process yet…I was getting paintings in order and all the details. Now that it is done, I can devote more time to other things like the process decision making. 😀 Thanks for praying!
Hi, fellow NF2er here. My MRI’s are this week and such I’m spending my weekend worrying. I try not to dwell, but alas I do allow myself some time to delve in my emotions. What really came to mind when I read this post was the neck/back/shoulder pain that you mentioned. I also struggled with this and as strange as it may sound wearing a mouth guard at night has greatly alleviated this pain. Likely I am a clincher and my body doesn’t relax at night. I don’t know if it would help you but wanted to pass the tip on, just in case it does help.
Hello! It is always great to hear from someone who understands fully what I write about. 🙂 I hope your MRI’s go smoothly this week and that your thoughts find peace. I know what you mean though…there are some nights I get in bed and thoughts just consume me. It is then I have to get up and refocus my thoughts and read a few Psalms. 🙂
That is so interesting about the mouth guard. I will be asking my doctor about this. I have the tumor that is growing in the spinal cord right at the base of the neck, so that is affecting the neck and upper shoulders…and hands but I wonder if I could be a clincher too?? Either that or just bad posture since the surgery to remove a tumor on my spine. hmmm, very interesting! Thanks for sharing! Gives me more questions to ask. 🙂