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.
Friday, November 28, 2014
Round 1 of Chemo Done!
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.
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 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.
Thursday, October 30, 2014
Home Sweet Home
Hello everyone!
I am happy to report that I am home and resting comfortably after another two day hospital stay.
Tuesday night, I had just completed a 1.5 mile jog and was resting on the couch while dinner was being prepared. As I was laying down, I felt a very funny sensation on the left side of my body and realized I couldn't move my left arm or left leg. I cried out for my mom to help me and fell back onto the couch and went into a seizure. This seizure was completely different then the first one. I remember pretty much the entire seizure from start to finish and never lost consciousness. The seizure only lasted about a minute or so but being trapped in my head it felt like it lasted forever. I can remember seeing my left arm extended out next to me and I could feel my left foot cramping, which was severely painful, and my thought process was that I was going to most likely dislocate my shoulder. I experienced a deafening noise in both ears that sounded like electricity running through wires (like if you have ever walked next to a transformer and heard the electrical buzz). Towards the end of the seizure I lost my hearing and really had a sort of "out of body experience" as I heard someone hyperventilating and it took a few seconds for me to realize that it was ME breathing that way. The entire time I was seizing I did not have the ability to speak and so I had no way to communicate with anyone around me, even though all I wanted to do was yell and scream because it was so painful. I wish I had passed out during this seizure because it was the most terrifying experience of my life. Once I regained the ability to speak, the first words out of my mouth were "Call 9-1-1". My speech was slurred for a few minutes, but quickly returned, but I never experienced a posttictal state of confusion or disorientation. I knew what day it was and where I was and what happened immediately after the conclusion of the seizure.
I arrived at the Emergency room shortly after 7pm and was promptly admitted and moved up to the hematology/oncology floor. I thought I would only have to stay for 1 day, but it turned into a two day event as I underwent blood work and MRIs and CT Scans and an EEG. Everything came back good, but there was some abnormality noted in my EEG so the decision was made to increase my Keppra dosage to 750 mg, twice daily. They wanted me to stay an extra night and meet with the neurologist, but my neurosurgeon Dr. Baronia told them I could go home if I wanted. I elected to forgo the neurology consult since my scans looked good and go home so I can sleep in my own bed (I can always meet with the neurologist later).
The good news with all of this is I was still able to receive my chemotherapy and radiation without interruption, so I don't have to tack additional days on to my treatment. Tomorrow will be the end of week two of chemotherapy and radiation and I will have exactly one month left of treatment. The bad news is that with this new onset seizure, my ability to drive has been delayed and my 6 months starts over (I will be driving my car to smash the radiation mask, so my compliance will have to take a back seat for a brief moment). Onward and upward my friends! Have a wonderful Halloween!
I am happy to report that I am home and resting comfortably after another two day hospital stay.
Tuesday night, I had just completed a 1.5 mile jog and was resting on the couch while dinner was being prepared. As I was laying down, I felt a very funny sensation on the left side of my body and realized I couldn't move my left arm or left leg. I cried out for my mom to help me and fell back onto the couch and went into a seizure. This seizure was completely different then the first one. I remember pretty much the entire seizure from start to finish and never lost consciousness. The seizure only lasted about a minute or so but being trapped in my head it felt like it lasted forever. I can remember seeing my left arm extended out next to me and I could feel my left foot cramping, which was severely painful, and my thought process was that I was going to most likely dislocate my shoulder. I experienced a deafening noise in both ears that sounded like electricity running through wires (like if you have ever walked next to a transformer and heard the electrical buzz). Towards the end of the seizure I lost my hearing and really had a sort of "out of body experience" as I heard someone hyperventilating and it took a few seconds for me to realize that it was ME breathing that way. The entire time I was seizing I did not have the ability to speak and so I had no way to communicate with anyone around me, even though all I wanted to do was yell and scream because it was so painful. I wish I had passed out during this seizure because it was the most terrifying experience of my life. Once I regained the ability to speak, the first words out of my mouth were "Call 9-1-1". My speech was slurred for a few minutes, but quickly returned, but I never experienced a posttictal state of confusion or disorientation. I knew what day it was and where I was and what happened immediately after the conclusion of the seizure.
I arrived at the Emergency room shortly after 7pm and was promptly admitted and moved up to the hematology/oncology floor. I thought I would only have to stay for 1 day, but it turned into a two day event as I underwent blood work and MRIs and CT Scans and an EEG. Everything came back good, but there was some abnormality noted in my EEG so the decision was made to increase my Keppra dosage to 750 mg, twice daily. They wanted me to stay an extra night and meet with the neurologist, but my neurosurgeon Dr. Baronia told them I could go home if I wanted. I elected to forgo the neurology consult since my scans looked good and go home so I can sleep in my own bed (I can always meet with the neurologist later).
The good news with all of this is I was still able to receive my chemotherapy and radiation without interruption, so I don't have to tack additional days on to my treatment. Tomorrow will be the end of week two of chemotherapy and radiation and I will have exactly one month left of treatment. The bad news is that with this new onset seizure, my ability to drive has been delayed and my 6 months starts over (I will be driving my car to smash the radiation mask, so my compliance will have to take a back seat for a brief moment). Onward and upward my friends! Have a wonderful Halloween!
Wednesday, October 22, 2014
Titanium
So, initially I was going to wait until I completed my first week of chemotherapy and radiation to post again, but I hit a milestone this evening that I felt I couldn't wait to share with everyone. Currently I am on day 3 of 5 of my first week of chemotherapy and radiation. I have experienced very little side effects and I have been able to work part time as well. The only side effect I experienced was Monday night, which I attribute to my antiemetic Zofran. I have not had an episode of nausea yet and I certainly hope that streak continues. The team at Southwest Cancer Center (SWCC) was correct when they told me that this type of chemotherapy is very well tolerated. I have been juicing in our vitamix blender every day and I probably drink about 3-4 8 oz. glasses of green juice a day as well as drinking more water than I ever have in my life. I am in the bathroom every 5 minutes to pee at this point, but if it helps my body wash these toxic chemicals through easier, then I'll deal with it.
The big news that I felt like sharing is that I ran a mile on the treadmill this evening after I got home from work. It certainly wasn't my best time and I took it pretty easy, but I was amazed at how well my body remembered how to run and how good I felt after I was finished. I have been battling a cold for the past week and so it actually helped to clear out my airways and make it easier to breathe. Who needs mucinex when you have exercise?!? Everyone at the doctor's office has told me that exercise will help combat the fatigue I will begin to experience the further along we get into radiation treatments.
I fully anticipate running again tomorrow morning and hope to be able to do so most days of the week. I certainly hope that I feel as good as I do now during the next 5 weeks of treatment.
The big news that I felt like sharing is that I ran a mile on the treadmill this evening after I got home from work. It certainly wasn't my best time and I took it pretty easy, but I was amazed at how well my body remembered how to run and how good I felt after I was finished. I have been battling a cold for the past week and so it actually helped to clear out my airways and make it easier to breathe. Who needs mucinex when you have exercise?!? Everyone at the doctor's office has told me that exercise will help combat the fatigue I will begin to experience the further along we get into radiation treatments.
I fully anticipate running again tomorrow morning and hope to be able to do so most days of the week. I certainly hope that I feel as good as I do now during the next 5 weeks of treatment.
Friday, October 17, 2014
Marathon training commences!
I have been back to work this week, which has been a very refreshing change for me. I have missed being in the clinic and having a distraction to help me through this process. I was very happy to see all my co-workers, who I have missed very much and even ran into a few former patient's who I had been thinking about during my time off.
Today was also my first day of radiation and my second experience in the mask was much more pleasant (for lack of a better word) than the first. I also received a lot more reassurance from the radiology technicians this treatment which helped ease some of my fears about the potential side effects of treatment. They work with each patient every day so they encounter first hand what each individual goes through and provided a very honest perspective of what most patient's encounter during radiation treatment. I am choosing to look at this like I'm training for a marathon, there will be many miles, many hills, many days where I won't feel like continuing, but in the long run it will all pay off and I will be rewarded for my hard work and effort. I will be crossing another type of finish line at the end.
Monday I will begin my chemotherapy treatments, and I am feeling confident that I will not have as many side effects from this chemo compared to others based on my research. I spoke with the radiation technologist and she mentioned that a patient earlier this morning had reported some very slight nausea from the same chemo medication, but that she had also failed to take her nausea medications as prescribed. I have every intention on taking my medication as prescribed so that I can still function at a higher level without feeling like I'm going to have projectile vomit. My biggest risk will be from working around other people. The chemotherapy and radiation will all but deplete my immune system and so I will need to be extra diligent about making sure I utilize good hand washing technique. I have also left clorox wipes on my work desk so that if people use my phone or the computer, they can wipe down the surfaces they've touched in my work station after. They have prescribed me an antibiotic that I will take 3 times a week to help counter infections, but I will also have to supplement with a probiotic because there are some negative side effects from having to be on an antibiotic so long. Basically I'll be a pill pusher for the next 6 weeks. This will be the most medication I have ever taken in my entire life. One way we will counter this is by having me wear a mask at work so that I am not exposed to potentially harmful bacteria and don't contract the flu from anyone. I'm not allowed to get a flu shot until after the conclusion of my radiation and chemotherapy.
On a positive note, I jogged last night for the first time since before the surgery. It was literally like I loped lightly for 150-300 feet, but it felt really good to pick up my pace and get moving. Small Victories are crucial to healing and I won't forget to pay close attention to those over the course of my 6 week marathon training.
1 day down, 29 to go. Let's do this.
Today was also my first day of radiation and my second experience in the mask was much more pleasant (for lack of a better word) than the first. I also received a lot more reassurance from the radiology technicians this treatment which helped ease some of my fears about the potential side effects of treatment. They work with each patient every day so they encounter first hand what each individual goes through and provided a very honest perspective of what most patient's encounter during radiation treatment. I am choosing to look at this like I'm training for a marathon, there will be many miles, many hills, many days where I won't feel like continuing, but in the long run it will all pay off and I will be rewarded for my hard work and effort. I will be crossing another type of finish line at the end.
Monday I will begin my chemotherapy treatments, and I am feeling confident that I will not have as many side effects from this chemo compared to others based on my research. I spoke with the radiation technologist and she mentioned that a patient earlier this morning had reported some very slight nausea from the same chemo medication, but that she had also failed to take her nausea medications as prescribed. I have every intention on taking my medication as prescribed so that I can still function at a higher level without feeling like I'm going to have projectile vomit. My biggest risk will be from working around other people. The chemotherapy and radiation will all but deplete my immune system and so I will need to be extra diligent about making sure I utilize good hand washing technique. I have also left clorox wipes on my work desk so that if people use my phone or the computer, they can wipe down the surfaces they've touched in my work station after. They have prescribed me an antibiotic that I will take 3 times a week to help counter infections, but I will also have to supplement with a probiotic because there are some negative side effects from having to be on an antibiotic so long. Basically I'll be a pill pusher for the next 6 weeks. This will be the most medication I have ever taken in my entire life. One way we will counter this is by having me wear a mask at work so that I am not exposed to potentially harmful bacteria and don't contract the flu from anyone. I'm not allowed to get a flu shot until after the conclusion of my radiation and chemotherapy.
On a positive note, I jogged last night for the first time since before the surgery. It was literally like I loped lightly for 150-300 feet, but it felt really good to pick up my pace and get moving. Small Victories are crucial to healing and I won't forget to pay close attention to those over the course of my 6 week marathon training.
1 day down, 29 to go. Let's do this.
Thursday, October 9, 2014
Tackling the Pyrenees
So I met with my second oncologist, Dr. Figeroa today. I learned that my tumor has caused a bit of controversy because there has been some disagreement on the diagnosis. Dr. Figeroa states that for the most part my tumor is a grade II Astrocytoma, but that there was an independent pathologist who presented my case as exhibiting characteristics of a grade III Astrocytoma. As a result, my pathology was sent off to the Mayo Clinic for further analysis and confirmation. The course of treatment will remain the same regardless of the diagnosis, so there hasn't been too much change there.
I went in this morning to get fitted for my radiation mask which will make even the most sane person crazy. The mask is a piece of plastic that is heated to 150 degrees and then removed to cool just long enough to be smashed over my face to allow for absolutely no movement of my head during radiation treatment. I'm not claustrophobic, but I had to talk myself down off a ledge this morning because I could feel my heart rate rising quickly and I wanted so badly to scream for someone to come take the mask off. It took about 5 minutes but I finally got my breathing under control and was able to "find my happy place". Thankfully I will only spend a max time of 15-30 minutes in that mask a day.
I was very happy to receive a release for returning to work because I am not the type of person to sit and wait and I'd like to maintain as much of a sense of normalcy during this process as I most possibly can. A lot of it will be dependent on my response to chemotherapy and radiation, but Dr. Figeroa was very optimistic about minimal side effects with the chemo. He informed me that this version of chemo is the only version available that can cross the blood brain barrier and so it is effective in treating brain tumors and certain brain cancers. He also informed me that it is very well tolerated (10 years ago I would have a much worse prognosis because chemotherapy was ineffective at treating my condition due to its inability to cross the blood brain barrier). I received a slew of prescriptions today and will require weekly blood draws to monitor my response to the chemotherapy and radiation. I will receive a very low dose of chemotherapy for 6 weeks while on radiation and then once radiation is completed, I will require an additional 6 months of chemotherapy alone to hopefully further stabilize my condition and improve my longevity. Along with the chemotherapy scans, I will require MRIs every 3 months for 2 years and then the frequency will be reduced after that time until the 5 year point. Once I make it to the 5 year mark I will most likely receive a clean bill of health. I have done a lot of processing over the past few days and I am beginning to come to terms with my condition and recognize that this is just another hurdle to be cleared. I'm ready to fight the good fight and look forward to putting this behind me so I can move on with my life and get back to running marathons and triathlons.
I went in this morning to get fitted for my radiation mask which will make even the most sane person crazy. The mask is a piece of plastic that is heated to 150 degrees and then removed to cool just long enough to be smashed over my face to allow for absolutely no movement of my head during radiation treatment. I'm not claustrophobic, but I had to talk myself down off a ledge this morning because I could feel my heart rate rising quickly and I wanted so badly to scream for someone to come take the mask off. It took about 5 minutes but I finally got my breathing under control and was able to "find my happy place". Thankfully I will only spend a max time of 15-30 minutes in that mask a day.
I was very happy to receive a release for returning to work because I am not the type of person to sit and wait and I'd like to maintain as much of a sense of normalcy during this process as I most possibly can. A lot of it will be dependent on my response to chemotherapy and radiation, but Dr. Figeroa was very optimistic about minimal side effects with the chemo. He informed me that this version of chemo is the only version available that can cross the blood brain barrier and so it is effective in treating brain tumors and certain brain cancers. He also informed me that it is very well tolerated (10 years ago I would have a much worse prognosis because chemotherapy was ineffective at treating my condition due to its inability to cross the blood brain barrier). I received a slew of prescriptions today and will require weekly blood draws to monitor my response to the chemotherapy and radiation. I will receive a very low dose of chemotherapy for 6 weeks while on radiation and then once radiation is completed, I will require an additional 6 months of chemotherapy alone to hopefully further stabilize my condition and improve my longevity. Along with the chemotherapy scans, I will require MRIs every 3 months for 2 years and then the frequency will be reduced after that time until the 5 year point. Once I make it to the 5 year mark I will most likely receive a clean bill of health. I have done a lot of processing over the past few days and I am beginning to come to terms with my condition and recognize that this is just another hurdle to be cleared. I'm ready to fight the good fight and look forward to putting this behind me so I can move on with my life and get back to running marathons and triathlons.
Tuesday, October 7, 2014
A long road ahead
Apparently when you have a brain tumor, this gets you curb side service at the Southwest Cancer Center. I walked in, checked in and they were already ready for me before I finished my paperwork. They took me back and I met with some of my "team" and I feel good knowing I am in fantastic hands with this particular group of folks.
I met with my radiation oncologist Dr. Torres and found out that I will be receiving a combination of chemotherapy and radiation treatment over the next six weeks. This was a bit of a surprise to learn about because originally the plan was to most likely just have radiation every day for 6 weeks. I half expected this though from the studies that I read that were provided to me from my neurosurgeon Dr. Baronia.
Despite having this on the back of my mind, it does not make the news any easier to process. There are a million emotions running through my head and frankly it is going to take some time to adjust. I'm less than thrilled at the aspect of chemotherapy, but my chances of overall improved outcomes are significantly higher with it versus radiation alone. My doctor appointment schedule has gone from two appointments this week to 4 and I suspect that I will have an entire line of appointments laid out each day here pretty soon.
I am scheduled to meet with a counselor tomorrow morning and then I will go in for my radiation simulation test on Thursday morning and meet with the chemotherapy specialist (Dr. Figeroa) Thursday afternoon. Continued prayers and good vibes are much appreciated as I am in for a rough road over the next 6 weeks but I am bound and determined to beat the socks off this thing. I'll update again once I meet with the chemotherapy oncologist (if there is any new information). Thank you all who have provided kind words and meals to Jeramy and myself over the past few weeks. I have not been able to say personal thank you's as much as I wish I could, but know that we are so incredibly grateful to have you all in our lives.
I met with my radiation oncologist Dr. Torres and found out that I will be receiving a combination of chemotherapy and radiation treatment over the next six weeks. This was a bit of a surprise to learn about because originally the plan was to most likely just have radiation every day for 6 weeks. I half expected this though from the studies that I read that were provided to me from my neurosurgeon Dr. Baronia.
Despite having this on the back of my mind, it does not make the news any easier to process. There are a million emotions running through my head and frankly it is going to take some time to adjust. I'm less than thrilled at the aspect of chemotherapy, but my chances of overall improved outcomes are significantly higher with it versus radiation alone. My doctor appointment schedule has gone from two appointments this week to 4 and I suspect that I will have an entire line of appointments laid out each day here pretty soon.
I am scheduled to meet with a counselor tomorrow morning and then I will go in for my radiation simulation test on Thursday morning and meet with the chemotherapy specialist (Dr. Figeroa) Thursday afternoon. Continued prayers and good vibes are much appreciated as I am in for a rough road over the next 6 weeks but I am bound and determined to beat the socks off this thing. I'll update again once I meet with the chemotherapy oncologist (if there is any new information). Thank you all who have provided kind words and meals to Jeramy and myself over the past few weeks. I have not been able to say personal thank you's as much as I wish I could, but know that we are so incredibly grateful to have you all in our lives.
Monday, October 6, 2014
Finding Strength in Weakness
There isn't much to update everyone on at this point, but the concept of writing holds a therapeutic aspect for me that I am compelled to capitalize on. I met with my neurosurgeon today and he was pleasantly surprised to see how successful my recovery has been within a two week period (I think he expected me to present with some residual neurological deficits, but alas, I have very few limitations at this point other than extreme fatigue with light activity (mostly as a result of being de-conditioned from surgery and some slight left sided weakness, which is resolving a little more each day. The staples finally came out and I am so happy for this, although I'm still not allowed to shower and soak my head for another 2 days. This has been the biggest source of agony for me to date and I am so looking forward to Thursday morning when I can finally scrub my fingers through my hair and enjoy the simple task of utilizing shampoo and conditioner to their full extent (It's the little things).
This weekend was for lack of a better word, rough. Friday started off poorly when my post-operative appointment was cancelled an hour before its scheduled time and I spent most of the day on an emotional roller coaster that consisted of more tears and tantrums than you ever thought possible in a 29 year old (I blame some of it on the fact that the surgery has left me in a heightened agitated state at times that has virtually obliterated my patience, ((not that I had much before)). I saw vast improvements in my mood upon the arrival of an autographed photograph from the one and only Kliff Kingsbury courtesy of my aunt Diane Mason as well as a massage from my Aunt Holly (who is the best massage therapist in town hands down) and a pedicure with Jeramy's Aunt Rachel and Uncle Jared.
Today I shocked my speech therapist with my overall recovery and progress with cognitive function as she informed me that I am the first patient she has ever seen recover as quickly as I have from brain surgery. I told her to get used to this type of progress, because I'm all about breaking records. Unfortunately, I did not receive running clearance this visit( I have to wait to see what my course of radiation treatment will be, but my neurosurgeon did tell me I could walk as much as I could tolerate without over doing it. I'm currently waiting for my husband to arrive home from work so that I can go on a walk this evening. I'm also optimistic that I will be able to return to work sooner than later at this point (even if it is just part time).
Physical Therapy has been far more challenging than I ever anticipated and I couldn't believe how worn out I was after attempting 6 squats. I go back for another day of PT and OT twice more this week and I am very excited at the thought of being able to progress my activity levels each time I attend.
Tomorrow I meet with Dr. Torres at the Southwest Cancer Center to see what the plan will be for radiation treatment. I have been reading several articles on the efficacy of treatment of low grade gliomas and was surprised to find that the research lies in favor of a mixture of radiation and chemotherapy, so we'll just have to see what they feel the best plan of action will be for me long term. I know I will be requiring 6 weeks of at least one form of treatment to stabilize the tumor and prevent it from progressing into a more aggressive form.
This weekend was for lack of a better word, rough. Friday started off poorly when my post-operative appointment was cancelled an hour before its scheduled time and I spent most of the day on an emotional roller coaster that consisted of more tears and tantrums than you ever thought possible in a 29 year old (I blame some of it on the fact that the surgery has left me in a heightened agitated state at times that has virtually obliterated my patience, ((not that I had much before)). I saw vast improvements in my mood upon the arrival of an autographed photograph from the one and only Kliff Kingsbury courtesy of my aunt Diane Mason as well as a massage from my Aunt Holly (who is the best massage therapist in town hands down) and a pedicure with Jeramy's Aunt Rachel and Uncle Jared.
Today I shocked my speech therapist with my overall recovery and progress with cognitive function as she informed me that I am the first patient she has ever seen recover as quickly as I have from brain surgery. I told her to get used to this type of progress, because I'm all about breaking records. Unfortunately, I did not receive running clearance this visit( I have to wait to see what my course of radiation treatment will be, but my neurosurgeon did tell me I could walk as much as I could tolerate without over doing it. I'm currently waiting for my husband to arrive home from work so that I can go on a walk this evening. I'm also optimistic that I will be able to return to work sooner than later at this point (even if it is just part time).
Physical Therapy has been far more challenging than I ever anticipated and I couldn't believe how worn out I was after attempting 6 squats. I go back for another day of PT and OT twice more this week and I am very excited at the thought of being able to progress my activity levels each time I attend.
Tomorrow I meet with Dr. Torres at the Southwest Cancer Center to see what the plan will be for radiation treatment. I have been reading several articles on the efficacy of treatment of low grade gliomas and was surprised to find that the research lies in favor of a mixture of radiation and chemotherapy, so we'll just have to see what they feel the best plan of action will be for me long term. I know I will be requiring 6 weeks of at least one form of treatment to stabilize the tumor and prevent it from progressing into a more aggressive form.
Tuesday, September 30, 2014
Today, marks one week since I had surgery to remove the astrocytoma from the right frontal lobe of my brain. I walked to the end of our culdesac and back twice today. I will make it to the park and back to the house before too long (that is approximately a half mile each way). I start OT/PT tomorrow morning and then Friday I will have my staples (all 50 some odd of them removed). I have never wanted to wash my hair so bad in my entire life, but it definitely shows how much we take for granted on a regular basis. I had my first official outing today and traveled to target. Don't let anyone lead you to believe that driving those motorized carts is an easy task. I ran into anything and everything but somehow managed to make it out alive. I didn't even walk for 5 minutes and I was so tired when I got home I haven't been able to get up off the couch since. I am scheduled to meet with my radiation oncologist next week and I assume that is when I will start the radiation therapy to stabilize the tumor. I'd like to add some clarification for everyone since I know many are asking. This tumor is NOT cancer. It is a benign tumor that has likely been growing unnoticed in my head for a VERY Long time. I am going to require follow up for a long time because this type of tumor can spread if it is not managed, but lets just say, the odds are in my favor for recovery. Jeramy starts his new position Monday here in Lubbock, and I hope to be back working as soon as I can so we can get back to our regular routine. I've been eyeballing a few triathlons for the future and I'm ready to rejoin my run group on their regular outings.
Sunday, September 28, 2014
Another milestone post today! Gaining a lot of use of my left hand back as we speak. I'm actually typing with 2 hands today. Today I can supinate and pronate my left forearm and pick up a plastic cup without having to use my right hand to assist. I'm looking forward to finally being able to shower without wound restrictions. I hope to be back at the MDs office next week to get my staples removed. My typing is currently slower than my thought process and that is frustrating to m because I'd like my hands to work faster. Today I walked out to my neighbors mailbox and came back, but it was very warm outside and I found myself wearing out very quickly and needed to sit down fast. I have my appetite back finally. I ate a full meal for both lunch and dinner today. I am very grateful for all of you who have provided me and my family with food the past week. It is crazy to think that Tuesday will be a week since Surgery. I have been very lethargic on my recovery and today is the first day that I feel like I've been really aware. I am ready to go running. For those of you who know me well, you know I am not the type to sit idle and wait on recovery to come along. I would rather reach out and grab it myself. This has been a huge mental battle because sometimes I cannot overcome the exhaustion. I'm mentally preparing for the battle that lays ahead for me. I will require radiation therapy to stabilize the tumor and prevent progression in the future. I have received my pathology report back and I have a low grade Astrocytoma of the right frontal lobe. My neurosurgery team is very optimistic on my recovery because I have so many positive factors going for me, like being young and not having any neurological deficits prior to the onset of the seizure that happened over a week ago Thursday. I am very optimistic as well, because I refuse to let this tumor define who I am personally. Statistics are just numbers and numbers are personal records waiting to be broken.
Friday, September 26, 2014
Home and healing......The next step
I'm home and it is a great feeling. This will take some time to type because
I currently have very limited use of my left hand. I expect to gain a lot of that of that back with occupational therapy which will start on wednesday. I can grip objects well, but letting go is challenging due to brain swelling from surgery. I'm very sleepy most of the time but have more energy each day. Limited use of my arm is very frustrating but I know I have to be patient and it will come with time. I'm very grateful for everyone who has come to visit even though I have a very flat affect. I tend to agitate easily so I apologize if I had come across as rather uncouth, it is not my intention to offend, I am simply heading down the road to recovery. Jeramy is headed back with my mother on Sunday and he will be returning permanently back to me here in Lubbock during this period. The pathology report has come back and I have a grade 2 astrocytoma on my right frontal lobe which was removed successfully from the brain surgery but will require additional radiation treatment after I heal. The neurosurgery team is highly positive on my outlook and I am ready and willing to put a fight. I would love to see more visitors during this period and am confident I will be back to running very soon. I can't thank you enough for all your prayers and support and please continue to keep us in your prayers and thoughts as we continue down this path. Thank you all again, Laura, Jeramy, and family
I currently have very limited use of my left hand. I expect to gain a lot of that of that back with occupational therapy which will start on wednesday. I can grip objects well, but letting go is challenging due to brain swelling from surgery. I'm very sleepy most of the time but have more energy each day. Limited use of my arm is very frustrating but I know I have to be patient and it will come with time. I'm very grateful for everyone who has come to visit even though I have a very flat affect. I tend to agitate easily so I apologize if I had come across as rather uncouth, it is not my intention to offend, I am simply heading down the road to recovery. Jeramy is headed back with my mother on Sunday and he will be returning permanently back to me here in Lubbock during this period. The pathology report has come back and I have a grade 2 astrocytoma on my right frontal lobe which was removed successfully from the brain surgery but will require additional radiation treatment after I heal. The neurosurgery team is highly positive on my outlook and I am ready and willing to put a fight. I would love to see more visitors during this period and am confident I will be back to running very soon. I can't thank you enough for all your prayers and support and please continue to keep us in your prayers and thoughts as we continue down this path. Thank you all again, Laura, Jeramy, and family
Thursday, September 25, 2014
Cleared to go home!
Good news! Laura will be able to go home this Friday! The doctors are impressed with her progress, and the family is in high hopes. The MRI came back with positive results, and we can't wait to get her back to the house.
The dogs will be very happy, and so will her sister (who has had to sleep with the dogs in Laura's absence). There will be plenty of time to visit this weekend when we get her home!
To quote Laura, in post-op recovery (who was quoting Couples Retreat): Boom!
She did great in PT today, walked 300 ft, and did many arm and legs exercises like a champ. Still has a lengthy journey ahead of her. Left side is weak but improving incredibly every day. She really has a strong and positive attitude. If you are looking at sending flowers or gifts still, make sure not to send them to the hospital, send them to our home address instead. We really can't believe she has been cleared this quickly. What an amazing woman! If you need the address, text/message Laura or Jeramy (he is monitoring all phones and computers) and he will get you the address. Once again thank you for your prayers, love and support,
Laura and family
The dogs will be very happy, and so will her sister (who has had to sleep with the dogs in Laura's absence). There will be plenty of time to visit this weekend when we get her home!
To quote Laura, in post-op recovery (who was quoting Couples Retreat): Boom!
She did great in PT today, walked 300 ft, and did many arm and legs exercises like a champ. Still has a lengthy journey ahead of her. Left side is weak but improving incredibly every day. She really has a strong and positive attitude. If you are looking at sending flowers or gifts still, make sure not to send them to the hospital, send them to our home address instead. We really can't believe she has been cleared this quickly. What an amazing woman! If you need the address, text/message Laura or Jeramy (he is monitoring all phones and computers) and he will get you the address. Once again thank you for your prayers, love and support,
Laura and family
Wednesday, September 24, 2014
Road to Recovery
9/24 Laura has been moved into 3 east room 300 just next to the elevators. She has walked with the PT and OT's and recovering very well. Left side of her body is getting stronger and stronger and her appetite is slowly coming back. She is still very tired and in manageable pain with the occasional nausea but maintains a very positive and encouraging attitude. We expect her to be in the hospital 2-3 days and then released to home. She has had another CT Scan and MRI but we have yet to hear back from the doctor for the results. Thank you all for support and prayers and we will update daily. We love you all and will see you soon! Jeramy & Laura
Monday, September 22, 2014
Get your Guns Up!
Well, here we are. Back in the hospital on the eve of surgery. I have spent the day talking with the doctors and surgical team, my "A" team if you will. I am in good hands with the neurosurgery team here at UMC and despite the news I am feeling very optimistic that all will go well with the surgery. They still have not diagnosed specifics on the mass, but Dr. Baronia suspects it is likely a tumor of some sort based on the presentation with my MRI. We won't know specifics on whether it is benign or malignant until they biopsy the tissue during surgery.
I had to be taken down for another round of CT scans and a Stealth MRI to map my brain for the surgery. This makes 3 CTs and 2 MRIs in a matter of a few days. I have been poked and prodded beyond belief to the extent that I look like a heroine addict (I assure you I am not). I've annoyed the nurses with my continual laps around the entire 3rd floor of the hospital and somehow escaped the yellow "fall precaution" wrist band this time around. They have padded my bed rails and labeled me as a seizure precaution even though I'm loaded up on keppra twice a day.
The craniotomy will take place in the morning. I will be the first case to go in and I will have to be awake for a portion of the surgery. My resident physician Dr. Murphree and Nurse Practitioner Joey helped me plan out my music playlist and pre-surgery preparations. I will not have to be intubated and they will keep me on light anesthetic for a good chunk of the procedure. Depending on what they find when they get in there, the surgery could potentially take up to 5 1/2 hours to complete.
I am ready to put up a fight and I refuse to let this tumor define me. I'm a fighter by nature and this is my opportunity to spread my wings and show what I'm really made of.
Sunday, September 21, 2014
Life Changes in an Instant....
I have been so overwhelmed with text messages and phone calls that I have not been able to update everyone in my life accordingly. I figured I could point a path for those to follow on this journey. I'll outline the information as best I can, but I will forewarn you I have never been very good with keeping up with these things. My efforts may be futile.
It all started Thursday evening when, in a matter of a few hours, I found myself in the emergency room and was soon admitted to the hospital for observation and an onslaught of tests and scans. Friday was a whirlwind. I'm not one to sit still for long and being restricted to my room under seizure and fall precautions was very challenging. I was thankful for all the visitors I received that day who made the time pass so much more quickly for me and especially so I could get up and walk around the floor instead of being stuck in bed all day. I just have to say I have the best co-workers and friends and family one could ask for. So many people came to my assistance and I feel so fortunate to have you all in my life. I did not have to spend Friday night alone. A big thanks goes to Dawn Raikey for keeping me company during the night and taking me home the next day! Also a huge thank you goes out to Jared & Rachel Carey who took me to the ED and then stayed with me so I wasn't alone. I am so incredibly blessed by you all and I can't say thank you enough to EVERYONE who came to see me that day.
This is just the beginning for me. I have to go back to the hospital on Monday to be admitted for surgery on Tuesday morning. I am grateful that they let me go home for the weekend to rest up and prepare. There is an area about 8 cm on the right frontal lobe of my brain that is in question and that is where they will focus the surgery. They do not know specifically what the mass is yet and won't until they go in and biopsy it. It could be tumor, infection, or simply inflammation at this point. There is a significant amount of swelling around the mass and the doctors think the inflammation is what caused me to have a seizure. The good news with all of this is that my neurological exam checks out clean so they are very optimistic on my recovery. The thought process is, if there is a good place to have a brain mass, this is the spot you want it to be. The biggest concern they have for deficits is memory loss and word finding (Jon Matthews, we'll have a whole new understanding of one another).
Please keep me, my family, and entire medical team in your prayers over the next few days. It will be a long road to recovery, but one I am confident I will make with the help of so many wonderful people.
9-24-15 6:51 AM
Update: Hey everyone, this is Jeramy. I'm not as quite as eloquent as Laura but I'd like to update everyone on her condition. Per the Surgeons words, everything went as planned as we discussed prior to the operation. He removed all of the tumor that he planned on from the mapping and said the surgery went great. She goes in for a MRI this morning to see what everything looks like now. She has been in SICU since the surgery and it appears we get to move to another floor later today. She is fairly weak on her left side but is regaining her strength pretty quickly. I will let everyone know what floor and room number she is transferred to when that happens. Thank you all for your support and prayers and please continue to keep her in your prayers.
Subscribe to:
Posts (Atom)