I am happy to report that today was my last day of round 1 of chemo. 6 weeks of popping pills 5 days a week has come to an end. I am very happy to have made it to this point and look forward to starting the recovery process. I still have 8 radiation treatments left to go, but I was informed last week that the last 5 treatments would be at a significantly reduced amount of radiation, so I feel like I really only have 3 treatments of radiation left before I am able to start the complete recovery process.
I have been very grateful to tolerate the chemotherapy the way that I have. I was lucky enough to have absolutely no nausea and vomiting (the most common side effect), but I did end up losing all my hair (even though the doctor said I wouldn't). Once radiation is complete I will look to meet back up with neurology to get my seizure medication under better control (I am taking too much medication in my opinion). I want to wait until the radiation is complete, however, because I feel that the seizure activity has been significantly increased due to the radiation directed at my brain. I will meet with the hema oncologist on the 9th of December to discuss what the next step will be. I suspect, I will have a rest period, followed by a repeat MRI sometime next month to ensure things are still looking good. They want me to wait approximately 4 weeks before the next MRI because the chemotherapy and radiation cause increased signal intensity on the MRI report and don't provide an accurate assessment. The past two MRI's that I have received, have looked "beautiful" according to the neurosurgeon, but I will require MRIs every 3 months for the next 2 years to ensure that I remain in remission, with no tumor progression. I am confident that I will have another beautiful MRI come December.
The radiation hadn't been too bad until the seizure activity started, the only major side effect that I have noticed is extreme fatigue. I was not prepared for how tired I would feel with radiation. It makes it challenging for me to be able to go to work for more than an hour to an hour and a half, without having the desperate need for a nap. The past two weeks, I have switched my routine so that I work for an hour or so in the morning and then go home and take a nap prior to radiation and then come home, eat lunch and take another nap after radiation. This next week will present a challenge for me because I am scheduled to see Dr. Baronia on Monday afternoon, and we have a work inservice on Tuesday afternoon. I am praying that I will have the strength to be able to attend both of these without severe exhaustion after.
My next progression is to attempt to go to the movie theater, but my first couple of attempts have fallen through because I've been so tired I couldn't manage it. We will see how I feel in the morning (and if the alamo theater isn't too crazy crowded) and I hope to be able to go see Mockingjay part 1. You would think going to a movie theater wouldn't be too exhausting, but even sitting in front of my computer or watching television mentally and physically wears me out to the extreme. I will likely have to take a nap after I finish writing this blog post, although it is close to lunch time and I am always willing to make an exception for food :).
Today temperatures are expected to be in the 70s and I hope that I might be able to make it out into the backyard and sit on the patio for a few minutes to get some sunlight and vitamin D. I have to be careful with the radiation treatments though because my skin is ultra sensitive and is not supposed to be exposed to direct sunlight.
Monday I will ask Dr. Torrez, how long I must follow my restrictions for radiation after I am complete with treatment and I will speak to Dr. Baronia about getting my dilantin prescription extended (the Texas Tech Neurology department is completely dropping the ball, which is no surprise considering I have just as much difficulty dealing with them from a professional stand point as well).
Thanksgiving was good. I ate my plate of food very quickly before I retreated to a very long awaited nap. We didn't even put a dent in the amount of food we have, so there are plenty of left overs for today. I am excited, even though I find that I cannot eat the amount of food that I did prior to starting treatment. I have lost 5 pounds since the treatments started and I suspect it is because my appetite has been significantly reduced. Either way, I was very happy to spend time with family and give thanks for all the blessings in my life. I can see why people would think it would be hard for me to be thankful this year, but I have been so blessed in so many ways since this process started that it is impossible to ignore the positives that have come out of this situation. Funny how something so awful, can bring about so much joy and love.
Friday, November 28, 2014
Friday, November 14, 2014
Rough Week
Hello everyone,
There has been a long gap since my last post because I have had some complications and delays with treatment. It will likely take me awhile to write this post because I cannot sit in front of a computer screen very long before I start to feel "funny".
I have had two hospitalizations in the past two weeks due to seizure activity and multiple medication adjustments with the keppra. Unfortunately, this last dose adjustment sent me reeling into an emotional state of complete distress and I spent two days in bed crying because I simply felt horrible. The decision was made to place me on an anti-depressant and anti-anxiety medication to help level me out and I am finally starting to feel better. The good news is that I feel better, the bad news is that the Keppra levels are still not adequate and I cannot go more than 6-8 hours in a day without "aura" onsets. I spoke with neurology in the hospital last week and asked if I had the flexibility to take an early dose if needed. The neurologist informed me that the metabolic rate of Keppra is anywhere between 8-12 hours, so if I needed to dose early I could. I started back to radiation after a 6 day hiatus this past Monday, only to have an increase in "aura" episodes which led me to having to stop radiation again on Wednesday. The plan is to resume Monday and I will see Neurology on Tuesday to figure out where we need to go with the seizure medication from here. I believe that once I complete radiation, the seizure activity will begin to improve as I notice a difference after a few days once the radiation is stopped. I suspect the radiation is irritating my brain to the point that it is causing these episodes to occur more frequently. My radiation oncologist does not believe this to be the case, but I can tell a difference and sometimes doctors don't know everything. I am currently taking 2,000mg of keppra daily (the max is 3,000) and I may have to have another adjustment when I start back on radiation Monday. The plan is to take one 1,000mg in the morning and then a 500 mg approximately 8 hours later. Then I will finish with the final 500 mg in the evening. I do better at night and in the morning because my seizure activity decreases significantly when I'm sleeping.
This whole process has set me back about a week on the radiation, so my new end date for radiation will be December 9th. It would be the week before, but unfortunately the Southwest Cancer Center will be closed Thursday/Friday for the Thanksgiving holiday (which will give me another 4 day rest break). I am still on track to finish Chemo November 28th. Chemotherapy has been much easier for me to tolerate than the radiation. As of today I now only have 2 weeks of chemo and 3 weeks of radiation. The only downside is that I am losing all of my hair (even though Dr. Fig said I wouldn't). He blamed it on stress and anxiety, but I'm pretty sure the chemo is playing a huge factor. I will likely shave my head this weekend when my friend Kyle gets in town. Jeramy is going to shave his head as well. I have been wearing Abbey Caps in the interim, which are very comfortable and cover all my bald spots very nicely.
When I first started this process, I thought 6 weeks would be a cake walk and I'd be done before I knew it, but as it turns out, 6 weeks is a VERY long time for chemo and radiation (especially because I have not been able to work this past week and a half). I am very grateful to be up and moving around again since this last medication adjustment and I hope that I can find a common ground on my seizure medication dosage to get me through this last 3 weeks. I have very much appreciated all your encouraging thoughts and prayers and comments and please continue to keep me in your prayers during this time. I have not been able to extend enough thank you cards and messages to everyone who has reached out to help and I apologize for that but I want you to know I am a little more encouraged with every message I receive. Your words mean more to me than you will ever know and I am so very thankful for you all.
I also want everyone to know that though I may get knocked down a lot, I will continue to get back up and fight. This tumor may take my physical abilities and may even break my spirit at times, but it will never break my will to keep fighting. I will fight this lying down if I must, but the message is clear that I will fight and I will win.
There has been a long gap since my last post because I have had some complications and delays with treatment. It will likely take me awhile to write this post because I cannot sit in front of a computer screen very long before I start to feel "funny".
I have had two hospitalizations in the past two weeks due to seizure activity and multiple medication adjustments with the keppra. Unfortunately, this last dose adjustment sent me reeling into an emotional state of complete distress and I spent two days in bed crying because I simply felt horrible. The decision was made to place me on an anti-depressant and anti-anxiety medication to help level me out and I am finally starting to feel better. The good news is that I feel better, the bad news is that the Keppra levels are still not adequate and I cannot go more than 6-8 hours in a day without "aura" onsets. I spoke with neurology in the hospital last week and asked if I had the flexibility to take an early dose if needed. The neurologist informed me that the metabolic rate of Keppra is anywhere between 8-12 hours, so if I needed to dose early I could. I started back to radiation after a 6 day hiatus this past Monday, only to have an increase in "aura" episodes which led me to having to stop radiation again on Wednesday. The plan is to resume Monday and I will see Neurology on Tuesday to figure out where we need to go with the seizure medication from here. I believe that once I complete radiation, the seizure activity will begin to improve as I notice a difference after a few days once the radiation is stopped. I suspect the radiation is irritating my brain to the point that it is causing these episodes to occur more frequently. My radiation oncologist does not believe this to be the case, but I can tell a difference and sometimes doctors don't know everything. I am currently taking 2,000mg of keppra daily (the max is 3,000) and I may have to have another adjustment when I start back on radiation Monday. The plan is to take one 1,000mg in the morning and then a 500 mg approximately 8 hours later. Then I will finish with the final 500 mg in the evening. I do better at night and in the morning because my seizure activity decreases significantly when I'm sleeping.
This whole process has set me back about a week on the radiation, so my new end date for radiation will be December 9th. It would be the week before, but unfortunately the Southwest Cancer Center will be closed Thursday/Friday for the Thanksgiving holiday (which will give me another 4 day rest break). I am still on track to finish Chemo November 28th. Chemotherapy has been much easier for me to tolerate than the radiation. As of today I now only have 2 weeks of chemo and 3 weeks of radiation. The only downside is that I am losing all of my hair (even though Dr. Fig said I wouldn't). He blamed it on stress and anxiety, but I'm pretty sure the chemo is playing a huge factor. I will likely shave my head this weekend when my friend Kyle gets in town. Jeramy is going to shave his head as well. I have been wearing Abbey Caps in the interim, which are very comfortable and cover all my bald spots very nicely.
When I first started this process, I thought 6 weeks would be a cake walk and I'd be done before I knew it, but as it turns out, 6 weeks is a VERY long time for chemo and radiation (especially because I have not been able to work this past week and a half). I am very grateful to be up and moving around again since this last medication adjustment and I hope that I can find a common ground on my seizure medication dosage to get me through this last 3 weeks. I have very much appreciated all your encouraging thoughts and prayers and comments and please continue to keep me in your prayers during this time. I have not been able to extend enough thank you cards and messages to everyone who has reached out to help and I apologize for that but I want you to know I am a little more encouraged with every message I receive. Your words mean more to me than you will ever know and I am so very thankful for you all.
I also want everyone to know that though I may get knocked down a lot, I will continue to get back up and fight. This tumor may take my physical abilities and may even break my spirit at times, but it will never break my will to keep fighting. I will fight this lying down if I must, but the message is clear that I will fight and I will win.
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