Hello Everyone!
I am writing this blog with a bit of mixed emotions today. Many of you know I have been battling intractable epilepsy since my cancer treatment and Wednesday the conversation came about that my seizures are the direct result of a build up of scar tissue that sits in the area of my frontal lobe. My neurologist explained a few things to me the first of which is probably the best news anyone could ask for (I am officially TUMOR free). The second was a little discouraging and I have spent the last day or so contemplating what my next step should be (I will likely never be seizure free due to the build up of scar tissue from radiation on my brain). I finally received confirmation on something that I have suspected since this all started. Radiation produced an additional build up of scar tissue on my brain that led to an increase in seizure activity and as a result, my seizures will likely never stop. Our attempts to adjust medications have not gone well because I am incredibly sensitive to most seizure medications (also allergic to some) and so side effects cannot be avoided to the degree that is deemed acceptable.
Currently I am on a medication called Fycompa (which I now take at night due to the severity of speech and drowsiness that occurs when I take it). This medication has provided me the most relief at this time and I have not had a seizure in a little over a month. The only issues I have experienced are aura's which do not last. This combined with my Keppra are the only things working to control the majority of my seizure activity, but the neurologist wanted me to be aware that our focus on care will be changing. Our goal now is to improve my impairment level to an area that is acceptable and allows me to function at the highest level I possibly can.
With this news comes the possibility that the things I loved so dearly prior to my illness, may never be in my future again. I say may, because I don't wish to speak in absolutes and with the continual advances in medicine there is always the potential that things can change. After all, I was told this type of tumor is incurable early on and that it was likely I would never be tumor free (yet here I am beating those odds once again). I was also told that I would have significant speech and cognitive deficits as a result of the location of the tumor and required amount of tissue to be removed (yet I have recovered 98 percent of my previous function). To tell me no, is to motivate me to push the boundaries of my recovery.
As it stands, I now have to come to the reality that running marathon's may be a thing of the past. I might never be able to coach or play the sport of volleyball again (a reality I thought I would face at a much older age); and that my new normal may involve a very limited ability to participate in exercise. To say I am devastated is an understatement, but I continue to direct my attention forward at the things I have gained since my diagnosis.
The only thing I regret is not listening to my instincts fully. I was told radiation would be a piece of cake, but deep down I had a "not so good" feeling about it. Turns out, radiation nearly killed me and chemotherapy wasn't much better. As I continue my research on important aspects of post-cancer care and diet recommendations; I have come to realize that cancer is a for-profit industry that does not have the best interest of the patient in mind. Chemotherapy and Radiation risks (IMHO) outweigh the benefit and often result in killing the patient faster than the cancer does. It has been my post-cancer changes that have kept me moving in the right direction and I will continue to focus on making the necessary change.
DIET is EVERYTHING. Especially in a day and age that our food is so devoid of nutrients and substance needed to keep our bodies healthy. I've seen people post articles from those who ate well but still end up sick and the reality is, this is an exception and not necessarily the rule. Disease is tricky and can infiltrate even healthy populations, but those who take care of themselves are less likely to experience these issues than those who don't.
Thursday, January 14, 2016
Friday, January 1, 2016
Reflections of 2015
Today is technically January 1st, but after my fill of black eyed peas today I felt a blog post might be appropriate to ring in the new year.
2015 definitely was an improvement to the end of 2014, I will say that for certain. Cancer recovery in terms of everything else I dealt with was the biggest struggle of the year and my 2015 was not all smiles and roses. There are things about brain surgery that physically change you and that struggle is always very real.
I started the year with a great MRI report and I am hoping to do the same again this year as I go in for my first 3 month MRI of 2016. Scanxiety is now a normal part of my vocabulary and no matter how many positive words of encouragement I hear, it will always be the black sheep of my diagnosis.
In March I made the decision to embark on a journey to regain strength and balance as best I could. Due to cancer treatments and seizure activity, I continuously struggle with tight muscles on my left side, which I attribute to slight tone from the area of removal of the tumor. I also struggle with balance on this side, and even after 9 months of yoga, it remains to be my biggest challenge yet.
In April I completed my final round of chemotherapy treatments and was officially done with all aspects of those medications. The excitement of this was enough to motivate me to begin pushing a little more and on April 20th, I returned to work full time. What I was not prepared for was the struggle I would face over the next 8 months to get my seizure activity under control and the difficulties I would face in finding the appropriate medications.
One aspect of cancer treatments that they don't completely prepare you for is the post radiation/treatment exhaustion. It has been over a year since I received my last radiation treatment and the level of exhaustion I experience during a typical working day is enough to take me to my knees. It is so intense, in fact, that I some times nod off during the day while I'm just sitting. I try to find stimulating activities to do when I'm sitting to help keep me awake, but often times it only provides temporary relief of the exhaustion. Most days I come home and I'm ready to go to bed by 8pm. Since my latest medication adjustment, things have improved slightly, but often the medication will make me incredibly sleepy in the mornings so I have simply traded one level of exhaustion for another. The good news on this front is that as of tomorrow I will be one month seizure free and I am down to two seizure medications instead of 3 to 4.
The medication fix came after I had to make the difficult and incredibly uneasy choice of seeking out a new neurologist because of issues with my previous care giver. Getting a second opinion was quite possibly the best decision I ever made because if I hadn't, I don't know that I would be celebrating this milestone right now.
Yoga has been an opportunity for me to self-reflect on personal struggles and gains and all I've been through during this past year. Many cancer survivors will tell you, going through this experience really makes you look at life in a whole new manner. Sometimes that outlook is not always pleasant, and in particular I think people struggle with how to address people who have been dealing with illness. I've learned that illness makes people uncomfortable in a way that they tend to withdraw. I believe people think they are doing a good thing because many are just not sure how to approach any subject and so its easier to back away and not be involved. In fact, this is probably the worst thing I have experienced during my recovery. People that I may have had a strong relationship with before now find that I am different and it makes them uncomfortable.
Brain Cancer and Brain Surgery changes you. I've been utilizing social media support groups to talk with other survivors and in every single conversation, the biggest complaint is that people don't know how to deal with survivors of this type of cancer. Many of these fellow survivors deal with cognitive and physical struggles that are far beyond my degree of impairment and somehow the one question is always, why do people feel the need to treat me differently.
Personality changes and emotional changes are also a common issue that I encounter in this group. For instance, I now cry at the drop of a dime. Before, I could have a conversation and deal with tough or positive issues without losing emotional control. Now, regardless of whether the issue is positive or negative, I cannot control my emotions. It makes even the most benign situations incredibly awkward because I end up looking like a blubbering idiot crying my eyes out for no good reason. These support groups have shown me that there is not enough information out there to help others learn how to approach the highs and lows of being a brain cancer survivor. I can literally be one person one day, and then someone completely different the next. These are things completely out of my control and despite my attempts to find a happy medium, I have not been able to find common ground.
I really have to give a huge shout out to my husband. Illness can really strain a relationship and push the boundaries of marriage, but this guy has been by my side for every single moment (good and bad). This guy has seen the true result of brain cancer recovery and still loves me with every bit of his soul. He's handled the emotional outbursts with complete grace. Its been a learning experience for us both.
While I wanted 2015 to be a year of moving forward, I discovered that recovery isn't that easy and moving forward is a very slow process. I spent more time in 2015 working towards emotional recovery than physical recovery. It was an eye opener. I look at this as my "new normal" and figure that each step I take is necessary no matter how good or bad it feels.
To all my friends and family, I hope that 2016 brings you the ability to appreciate what you have and focus on those important to you. Never be apologetic about who you are and embrace your quirks and flaws. I hope you all remembered to eat your black eyed peas for luck in the New Year!
2015 definitely was an improvement to the end of 2014, I will say that for certain. Cancer recovery in terms of everything else I dealt with was the biggest struggle of the year and my 2015 was not all smiles and roses. There are things about brain surgery that physically change you and that struggle is always very real.
I started the year with a great MRI report and I am hoping to do the same again this year as I go in for my first 3 month MRI of 2016. Scanxiety is now a normal part of my vocabulary and no matter how many positive words of encouragement I hear, it will always be the black sheep of my diagnosis.
In March I made the decision to embark on a journey to regain strength and balance as best I could. Due to cancer treatments and seizure activity, I continuously struggle with tight muscles on my left side, which I attribute to slight tone from the area of removal of the tumor. I also struggle with balance on this side, and even after 9 months of yoga, it remains to be my biggest challenge yet.
In April I completed my final round of chemotherapy treatments and was officially done with all aspects of those medications. The excitement of this was enough to motivate me to begin pushing a little more and on April 20th, I returned to work full time. What I was not prepared for was the struggle I would face over the next 8 months to get my seizure activity under control and the difficulties I would face in finding the appropriate medications.
One aspect of cancer treatments that they don't completely prepare you for is the post radiation/treatment exhaustion. It has been over a year since I received my last radiation treatment and the level of exhaustion I experience during a typical working day is enough to take me to my knees. It is so intense, in fact, that I some times nod off during the day while I'm just sitting. I try to find stimulating activities to do when I'm sitting to help keep me awake, but often times it only provides temporary relief of the exhaustion. Most days I come home and I'm ready to go to bed by 8pm. Since my latest medication adjustment, things have improved slightly, but often the medication will make me incredibly sleepy in the mornings so I have simply traded one level of exhaustion for another. The good news on this front is that as of tomorrow I will be one month seizure free and I am down to two seizure medications instead of 3 to 4.
The medication fix came after I had to make the difficult and incredibly uneasy choice of seeking out a new neurologist because of issues with my previous care giver. Getting a second opinion was quite possibly the best decision I ever made because if I hadn't, I don't know that I would be celebrating this milestone right now.
Yoga has been an opportunity for me to self-reflect on personal struggles and gains and all I've been through during this past year. Many cancer survivors will tell you, going through this experience really makes you look at life in a whole new manner. Sometimes that outlook is not always pleasant, and in particular I think people struggle with how to address people who have been dealing with illness. I've learned that illness makes people uncomfortable in a way that they tend to withdraw. I believe people think they are doing a good thing because many are just not sure how to approach any subject and so its easier to back away and not be involved. In fact, this is probably the worst thing I have experienced during my recovery. People that I may have had a strong relationship with before now find that I am different and it makes them uncomfortable.
Brain Cancer and Brain Surgery changes you. I've been utilizing social media support groups to talk with other survivors and in every single conversation, the biggest complaint is that people don't know how to deal with survivors of this type of cancer. Many of these fellow survivors deal with cognitive and physical struggles that are far beyond my degree of impairment and somehow the one question is always, why do people feel the need to treat me differently.
Personality changes and emotional changes are also a common issue that I encounter in this group. For instance, I now cry at the drop of a dime. Before, I could have a conversation and deal with tough or positive issues without losing emotional control. Now, regardless of whether the issue is positive or negative, I cannot control my emotions. It makes even the most benign situations incredibly awkward because I end up looking like a blubbering idiot crying my eyes out for no good reason. These support groups have shown me that there is not enough information out there to help others learn how to approach the highs and lows of being a brain cancer survivor. I can literally be one person one day, and then someone completely different the next. These are things completely out of my control and despite my attempts to find a happy medium, I have not been able to find common ground.
I really have to give a huge shout out to my husband. Illness can really strain a relationship and push the boundaries of marriage, but this guy has been by my side for every single moment (good and bad). This guy has seen the true result of brain cancer recovery and still loves me with every bit of his soul. He's handled the emotional outbursts with complete grace. Its been a learning experience for us both.
While I wanted 2015 to be a year of moving forward, I discovered that recovery isn't that easy and moving forward is a very slow process. I spent more time in 2015 working towards emotional recovery than physical recovery. It was an eye opener. I look at this as my "new normal" and figure that each step I take is necessary no matter how good or bad it feels.
To all my friends and family, I hope that 2016 brings you the ability to appreciate what you have and focus on those important to you. Never be apologetic about who you are and embrace your quirks and flaws. I hope you all remembered to eat your black eyed peas for luck in the New Year!
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