I figured today as I was at work talking with one our technicians that I was probably due for a blog update because it had been awhile since my last post. So here it is!
The holidays were very eventful for me. We had my parents, sister and her husband, my in-laws and my husbands younger brother and his two kids over for Christmas. I was worried at first because I wasn't sure how I was going to handle all the people. When I'm in an overstimulating environment for too long, I start to have burning on the left side of my body and usually can only last for 10-20 minutes before I have to leave to find a quieter environment so things can settle down. Amazingly I was able to spend a good majority of my time with the family and did not have to go lay down in the bedroom to get away from all the commotion. My sweet, sweet husband went to the store and purchased non-alcoholic champagne for me to toast with on New Years. I am still not allowed to have any alcohol because it lowers the seizure threshold and with how frequently I have been having seizure activity, it is very ill advised for me to chance it. So I am abstaining from the drinking for a while (although I look forward to my first glass of wine once I get clearance from the physician's). They wouldn't even let me have a glass of wine on my 30th birthday (bummer, I know).
I am now 3 weeks and 3 days out of radiation and I can tell I'm starting to improve (more so now than the past few weeks). It is still a very slow process, but I can now get through the day with very little issue in terms of seizure activity and I have been able to slowly increase my hours at work. Today I worked 2 hours in the morning and another 2 in the afternoon for a total of a little over 4 hours. This is good timing because as of today my FMLA is completely depleted and I had to return to part time status or risk losing my benefits. Our goal is to work up to where I can work 4 hours straight, but I am not quite there.
The best news of all is that I resumed patient treatment today and treated my first patient in over 3 months. It was such a good feeling even though I was pretty tired after. I will have a couple more patients on my schedule this week, but they are very easy and so it will allow me to better pace myself so I don't wear out too quick. The other good news is that my dilantin dosage has been reduced from 300 mg a day to 200 mg a day. I notice a difference because I was starting to have some issues and felt like it might be time for a medication adjustment. I talked to Dr. Baronia on Saturday (because that is the awesome neurosurgeon that he is) and he instructed me to drop down 100mg on the dilantin and see how I did. I notice a difference. I don't have as hard of time with it as I was starting to while I was taking it three times a day. I suspect we will remain on this dose for a period and then continue to work to wean me off the dilantin completely. I have been successful at weaning off several medications so I am very thankful for that because I am not a fan of taking meds. Currently we are in the process of weaning me off the lorazepam (which I was only taking at night to help me sleep) so there is more positive news there as well.
I go back on January 6th for a repeat MRI scan to see how things have been doing over the past month and then I will follow up with the oncology team a week later to determine what the next course of treatment will be for me. I am feeling better every day and today was an emotional turning point for me because I was worried about whether or not I would be able to return to work. Today was the first day I felt like I will be able to return to work full time at some point. Yay!
Monday, December 29, 2014
Tuesday, December 9, 2014
On to the next Step
Well,
It is very difficult to know where the best place to start this post is so I apologize if it jumps around a lot. I was not sure how to put the words together correctly to allow for even flow as so many thoughts and emotions have been running through my mind over the past 24 hours. Today has been very physically and emotionally draining for me. The past few weeks I have flown low on the radar because I have had an increasingly difficult time with the radiation. The Thursday of Thanksgiving, I began to experience headaches and transient ischemic attack-like symptoms that ended up having me placed on a steroid medication. I was able to complete another week of treatment and then Wednesday I had a TIA event during radiation and had to have my steroid dose upped to 3 times a day. Things were going well until about Sunday, when I began having more frequent TIA episodes (and a slight histamine reaction to the decadron). Monday the decision was made to hold off on radiation and up my dose to four times a day with the steroid and I had to be monitored for increased intra-cranial pressure.
Monday I sat down with my mom and my husband and spoke about "how we were going to finish the last couple of radiation visits". As the conversation continued, I came to the conclusion that I was most likely going to have to forego the last couple of treatments because it was getting to the point where I couldn't get out of bed and function like a person anymore and I felt like if I were to receive anymore radiation, it might just kill me. This decision was not made lightly, but I felt very at peace with it. I know my body better than the doctor's and I feel like sometimes radiation oncologists get caught up in the numbers and forget about the patient.
I literally spent all day today at the doctor's office and had to have a repeat MRI to see about increased ICP. I spoke with my nurse about my "reaction" to decadron and she mentioned I was likely having a histamine response and that taking claritin or benadryll may help to reduce the reaction. So far, so good. I have not experienced the reaction after taking the dexamethasone near to the extent I was before. I hope this trend continues.
I am still convinced that I am having ICP issues because the TIAs are happening on the right side of my body instead of the left (where we would expect to have issues). I spoke in depth with my radiation oncologist and hema-oncologist and staff of nurses and despite the fact that my radiation oncologist wants me to finish out the last two sessions, I have decided not to continue with it. The hems-oncologist argued a great point that there are no studies out there that show any significant difference in not doing the last few treatments. I have had the equivalent of 4800 cGys/48 Gys(radiation units) and all the research I am seeing online shows that for my type of tumor, it is typical to have treatment ranges between 4000-4500cGys or 40-45Gys, which makes me even more confident in my decision to discontinue.
The thing we have to remember about radiation is that is based on "guidelines" from case studies and not everyone fits into the same box when it comes to treatment. I'd like to make it very clear that I am not stopping treatment completely, I am simply ending my course of radiation a few treatments early. I still have a very long road to recovery ahead of me, but I am confident that I will not be able to recover without further issue. It will likely take me a few weeks to normalize as radiation side effects can last 3-4 weeks after treatment, but I fully anticipate that I will be feeling better in a few weeks and be able to get back to a more regular schedule.
There were a lot of tears shed today, but they were mostly tears of relief as I feel I am headed in the right direction and things will soon start looking up. Thank you for your continued prayers and support and I am so glad to put this chapter behind me.
It is very difficult to know where the best place to start this post is so I apologize if it jumps around a lot. I was not sure how to put the words together correctly to allow for even flow as so many thoughts and emotions have been running through my mind over the past 24 hours. Today has been very physically and emotionally draining for me. The past few weeks I have flown low on the radar because I have had an increasingly difficult time with the radiation. The Thursday of Thanksgiving, I began to experience headaches and transient ischemic attack-like symptoms that ended up having me placed on a steroid medication. I was able to complete another week of treatment and then Wednesday I had a TIA event during radiation and had to have my steroid dose upped to 3 times a day. Things were going well until about Sunday, when I began having more frequent TIA episodes (and a slight histamine reaction to the decadron). Monday the decision was made to hold off on radiation and up my dose to four times a day with the steroid and I had to be monitored for increased intra-cranial pressure.
Monday I sat down with my mom and my husband and spoke about "how we were going to finish the last couple of radiation visits". As the conversation continued, I came to the conclusion that I was most likely going to have to forego the last couple of treatments because it was getting to the point where I couldn't get out of bed and function like a person anymore and I felt like if I were to receive anymore radiation, it might just kill me. This decision was not made lightly, but I felt very at peace with it. I know my body better than the doctor's and I feel like sometimes radiation oncologists get caught up in the numbers and forget about the patient.
I literally spent all day today at the doctor's office and had to have a repeat MRI to see about increased ICP. I spoke with my nurse about my "reaction" to decadron and she mentioned I was likely having a histamine response and that taking claritin or benadryll may help to reduce the reaction. So far, so good. I have not experienced the reaction after taking the dexamethasone near to the extent I was before. I hope this trend continues.
I am still convinced that I am having ICP issues because the TIAs are happening on the right side of my body instead of the left (where we would expect to have issues). I spoke in depth with my radiation oncologist and hema-oncologist and staff of nurses and despite the fact that my radiation oncologist wants me to finish out the last two sessions, I have decided not to continue with it. The hems-oncologist argued a great point that there are no studies out there that show any significant difference in not doing the last few treatments. I have had the equivalent of 4800 cGys/48 Gys(radiation units) and all the research I am seeing online shows that for my type of tumor, it is typical to have treatment ranges between 4000-4500cGys or 40-45Gys, which makes me even more confident in my decision to discontinue.
The thing we have to remember about radiation is that is based on "guidelines" from case studies and not everyone fits into the same box when it comes to treatment. I'd like to make it very clear that I am not stopping treatment completely, I am simply ending my course of radiation a few treatments early. I still have a very long road to recovery ahead of me, but I am confident that I will not be able to recover without further issue. It will likely take me a few weeks to normalize as radiation side effects can last 3-4 weeks after treatment, but I fully anticipate that I will be feeling better in a few weeks and be able to get back to a more regular schedule.
There were a lot of tears shed today, but they were mostly tears of relief as I feel I am headed in the right direction and things will soon start looking up. Thank you for your continued prayers and support and I am so glad to put this chapter behind me.
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