After my radiation appt, I met with Dr. Ngo, my radiation oncologist. I wrote him a note telling him how my symptoms are getting worse so he put me back on those darn steroids (Decadron 4mg 2x a day) Not as much as the first time (actually half as much) and he wasn’t the doctor who originally put me on the steroids (it was my neurosurgeon) so this time I just have to watch the dosing carefully – my neurologist said it was a low enough dose to easily wean off of. After taking one dose of the decadron, I felt less overwhelmed with my symptoms but still have them! The first time I took them it was like night and day -one minute I’m lying in bed in a fetal position wishing the dizziness would stop where I couldn’t even stand up without falling down to feeling almost normal! This time the steroids didn’t have that dramatic of an impact but at least it’s helping (there is no way I would be writing this blog if I was as overwhelmed as I was a few hours ago! After taking the decadron, I was able to go downstairs (still with help) and eat some lunch. What a crazy day! Just resting now!
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The treatment itself went as normal but Satomi sat with the Radiation Oncologist today. She wrote him a note describing her worsening nausea, dizziness, etc. All classic symptoms of brain swelling so he put her back on Decadron. We all hate Decardon but if it reduces her pain, I say take it. At least this time we know what to expect.
Satomi was dizzy, nauseas, and tired again today. She says it was mostly a bad day. I think using a wheelchair helps a bit but it does make it harder on her Mom. Her normal headache seemed to subside up until about 30 minutes ago. She had to take an extra Darvocet to sleep.
She was feeling up to putting the girls to bed. She lied with them for over an hour until they fell asleep. It was nice.
We found out last week that Darvocet has been pulled from the pharmacies because it has been linked to long-term heart damage. It works very well for Satomi so we were disappointed that her supply can’t be replenished. It looks like she’s going to have to switch back to Vicodin to mask her pain. The Vicodin plugs up her digestive tract pretty bad. As usual, we’ll worry about that later.
I received a call from our Neurosurgeon’s office this afternoon. His nurse wanted to make sure our questions were answered and wanted to emphasize the importance of Radiation Therapy. The nurse was very happy to hear that we’d already started treatment. She also explained how the tumor was not a seperate mass but damaged brain tissue and therefore not operable. The damage that would be caused by the operation would cause more side effects and quite likely be life threatening on its own. Basically things we already knew.
Today, I got up really late (after 9) and didn’t see the girls off again! I didn’t sleep very well – even lying down, I have this dizziness that also gives me a headache especially when I roll from one side to the other. I got out of bed when my mom came, to eat something and to get ready to go to my radiation appt. I am so dizzy I have to hold onto her and the railing when going up/down the stairs (if I didn’t have someone there, I would probably hold on the railing with both hands!) Breakfast was just brown rice and nori (dried seaweed) cuz I wasn’t sure if I could keep anything down. Then we went to my radiation appt. I have succumbed to using a manual wheelchair to get me from one place to the next since I’ve become so dizzy! I feel like now the only exercise I get is going up/down the stairs to eat! But I’m not eating so much so I don’t think I need the exercise! The radiation was only a few minutes -it takes longer to get to the center than it is to get the treatment which was great 2 yrs ago for the breast CA when I was working – just in and out and it was so close to work! I hope this doesn’t get worse (I don’t know what that could be since I think this is pretty bad) At least I can correspond still with the use of my BlackBerry! But it takes some time but I’ll take it – it keeps my brain stimulated! I took about 3 times throughout the day to finish this blog entry but at least I’m doing it! I sent an e-mail earlier to Sean about how sick I was with all this nausea, dizziness, headache, loss of hearing and visual disturbances but I feel a little better now after taking my meds and a little rest -also, Jillian is right next to me watching the cartoon “Avatar: the last airbender” but I wish I could hear her and interact with her more so I could really spend some quality time with both my girls but I guess this is as much interaction I could have with them! I am so grateful that Sean’s parents, my mom and Sean are very involved with the girls! I would feel terrible if they weren’t there to help me with them! We have a holiday party on Saturday with our friends and the girls are going to their cousin, KK’s , 6th birthday party. I think Sean will go to our friends’ holiday party by himself and my family will take the girls to KK’s party. I’m thinking I should just stay home with the way I feel! I’m not going to be able to hear any of the conversations we’ll be having and so I probably won’t have as much fun! It would be great to see all my friends but it also may be too overwhelming! I wish, hope, pray I get better! For Christmas and my birthday this year, this is all that I would like!
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Satomi's Cancer Blog 