What a medication adventure. I have never felt this way before in my cancer career.
It has been a very difficult time for me. With all my left over energy I just try to keep a semi normal day going, its tiresome. I can't keep my eyes open.
I really am so happy that the steroids have controlled the horrid brain swelling, vision problems, vertigo and most of alll the killer knife machete head pains.
My poor body is braking down so fast and I feel that everything that I add to it is not strong enough to balance me out internally. I'm juicing, eating veggies, salads and eating good healthy meals for a healthy immune system.
The past month has been pretty much the same. Wakie Wakie between 4-7 am Hyper all day, followed by a couch lunch time nap. Again... 6mg steroid in Pm. Antibiotic because my immune system is broken down and I can get pneumonia very easily. I started a Caeser -Migraine pill every day to help with the headaches and nerve/eye issues. Add sleeping pills to the sheep and lambs that do cart wheels in the other half of my brain. Of course a normal 33 year girl would go nuts with out her nightly prune juice, miralax drink :)
I basically feel like I am constantly dipped in and out of a pot of Starbucks coffee! My heart is constantly racing and my intention span is.....ugh I don't have one. My jaw hurts from talking too much! I am sick of apologizing for my rude outbursts...or what the doctor told me last year, the radiation desttoryed my "Filter"
My Neurologist did drop me down to a lesser dose of steroid over a week ago. I made a phone call today and explained that I don't think I can keep doing this for a month till my next appointment. The happiest nurse called me back is letting me taper down the steroid and see how my head feels. I am very nervous. I was in so much pain and can't even imagine getting to that point again. Any twitch and I popping them like pezz candy! I also learned from the lovey nurse that the hospital gave me the worst instructions! Don't take the steroids at night! Really! Breakfast and Lunch.
Urgent Care is my #1 Speed Dial
Radialoist News from Todays Appt
The scan looked great. The nerve looks nice and the Radiation seemed to have worked :) It's still a work in progress. I have some tightness in the area, normal. I will see her in two months. Have a few more scans and hopefully we will see full positive improvement as time goes by. It needs to shrink back to normal and let's pray it didn't spread anywhere else. POSITIVE!
I am concerned about my Brain and the Necrosis. I am scared that the swelling is going to be something that I have to deal with forever. Which means head & nerve pains and daily medicince. I just don't want to be a paitent. I don't want to be on medicine. I don't want to have cancer anymore.
The Pill Box!
Knowing I have been able to handle my body with natural beautiful earthy ways, it's killing me to live with a SMTWTFS Blue plastic box filled with pills!
That's my Medical Journal! Other good news...Paul and I are looking forward to getting back into our new renovated home! It's been a very long, stressful summer. Tile, Furniture, lighting...all the fun stuff is keeping me busy. A little dizzy too! I am very excited! I want Paul to have some happiness and not worry about me so much. Easy to say...but he always worries...because he loves me so much. Awe.
SPOHNC FOR A CURE !!!!!!!!!!!!!
Please join us!!!! TEAM SPOHNC I will be signing up and would love for my friends, family and love Angels to donate to an amzing cause!!!!
Please go to the website cycleforsurvival.org and look for Team Spohnc for more information on how to participate and how to give donations.
I will be sending out emails and updates in the next week or two. I would really apprecaite the support and my fellow fighters would too! Every DIme helps. I don't think people really understand the impact that Cancer of the head, oral, mouth and neck have on patients and our loved ones! It's not only visual and emotional...but we get silly issues that are damaging. Support for a cure..HELPS! Thank you for listening to me.
I love all of you to pieces. I have such tough days, but know my life is a blessing and I am grateful. I cry because I am sad, and for the good things too. I picked some beautiful September flowers that were wilting and thought....hey...they still need to be in my home being adored. I am wilting, but I will stay precious to myself. Stick me in water and I will keep blooming, and make a room pretty.
My Blood is still pumping gently along my pink heart and
Every day I awake is a box wrapped with blue ribbon filled with love....and
hopefully a pair of new shoes :
Goodbye today, See you Tomorrow
I love my husband