Thursday, February 17, 2011

ROUnd one of Temodar Chemo Complete

I am way behind on updates but I'll blame it on chemotherapy. :D

I am officially on chemo. I went to the local oncologist last Tuesday and I am now on Temodar (oral chemo for brain cancer) I'm taking 145 mg a day for five days and then will be off for 23 days before starting my next cycle. Round one has been completed I did not have any major side effects from it other than posssibly fatigue The only other effect was some nausea but I never got sick so i'm considering it a victory.. I'm not sure if that is still left over from my hospital time or if it's related to the chemo. I"m hoping that going into this not expecting symptoms will push any that may try to sneak in out. Positive thinking has helped me get where I am so hopefully that will continue. In all seriousness, Temadar is a mild chemo in terms of chemo drugs but highly effective in the world of brain cancer. I will be taking two small pills (a 40 mg and 5 mg)each day of my treatment and avoid people that are sick and take extra precautions to prevent illnesses while taking it because, like other chemos, the number of white blood cells are effected. I start round two on March 8... (According to my hubby. I think it's the following week but I just need to mark the days out.))

On a positive note, I have had only mild side side effects from it at this point (It's still early but just the same) I actually feel really good today. It's my first day home that I feel like tackling major physical things good. I hope I continue to feel like this and am able to return to work before they close their doors in about a month. I guess it's one step at a time, I need to get back behind the wheel first. If all this works out like this, maybe my bad luck from the past few months will FINALLY turn around. Hopefully we can finally get stabilized and I can feel like I've been making the right choices again instead of questioning some of what I chose.

Besides, I'm running out of things to do here at home and would rather save some of the more taxing items for when I"m on unemployment but feeling healthy.

Thursday, February 10, 2011

A Very Long Overdue Update

I'm blaming the lack of updates on anesthesia.

  • It has been 4 years since I was hit with a baseball that led to the discovery of my brain tumor.
  • It has been 3 years and 4 months since I completed External beam radiation.
  • It has been 3 years and 7 month (today) since I had a partial resection (more partial than we realized at the time)of my grade three tumor.
  • It has been approximately 10 weeks since my second resection, shunt insertion, and the start of a month of chaos.
  • 3 weeks ago I had to have my shunt revised with 5 surgeries over 3 days.
On the good side, the shunt appears to be working now, there were no signs of the Staph infection this time around, and I seem to be healing fairly well. *KNock on wood*

Medically - I have had a second shunt inserted to help keep the cerebral spinal fluid from collecting on the brain or in my scalp. I have a VP shunt(basically a drain to drain the fluid from one place to another that goes from the right side of my brain to a reservoir in the right side of my abdomen. As well as a subgaleal(between the scalp and cranium) shunt that goes to the right side of my abdomen. Together these two shunts are successfully keeping the cerebral spinal fluid from building up in areas of my head. Now if we can just keep these two from clogging up like the original shunt did, we'll be in good shape.

Luckily, since we have two working shunts now, I have not had issues with getting sick anymore. They only had to open a small area of what they had to in the past to do the shunt but they shaved a lot more of my hair this time. (oh well) I have at least three areas of staples on my head (Might be more that I haven't actually found). I also have three areas of staples on my neck where they had to maneuver the shunt as they guided it to my stomach area. I have a large incision in my right side (Not all that different from what an appendix incision looks like.)

My NS wants me to start chemo as soon as possible so I will be returning to the oncologist Feb 15th to discuss beginning Temodar chemo. I will take that five days off 25 for six months and then we'll go from there. (Unless he changes the timeline again then it may be different. Hopefully by this time next week I'll be part of the way through my first round of chemo.

Emotionally - I'm ready for things to slow down for a while so I can get back to work before they shut us down. *sigh*

MEntally - THis is the first time I've felt like sitting down and writing an update so I would say that mentally I'm not anywhere close to where I want to be. I've become a tv-a-holic.

PHysically - I feel like I've been run over by a semi truck!!! I think the doctor lost control of the sstapler when he put me back together. My side and neck both hurt quite a bit from the incisions. I Have to keep my head above my stomach until the scalp finishes healing and that means I don't sleep well. We have a hospital bed so I can sleep elevated but it is just as uncomfortable as being in the hospital without the every 30 minute interruptions. I'm exhausted because of not sleeping well and tired of not being able to do what I want. I'm just not able to do so many things because of various reasons. (Most of my incisions have healed well, the ones on my neck are not as healed as the rest because of it being in an area that is constantly moving. I hope I don't have to go through any metal detectors any time soon because I'm sure the 100 or more staples will set it off. I have some really tight muscles in areas I can't do anything about because of incisions(neck, shoulders). I need my chiropractor as well but I don't think he could work on me if he wanted to because of the shunt lines, incisions, etc. Besides I can't lay on my stomach yet. Might have to try to get in to see him next time I'm supposed to be in town.

I think that's all for the update for now. My brain has done more work in the past hour than it has in two weeks. UGH!!!