As you could probably tell from my last post I was extremely disappointed with how things were going up here. As I said I knew the tumor had progressed just from the symptoms I was going through that did not make it any easier to hear that was the case. It seems we're back on track to hook this device up. I was feeling extremely down for a while because this device is not a miracle worker. It is designed to sue reds the growth of tumor cells, but not necessarily destroy them. This means I'll probably be wearing this device as long as there is no progression of the tumor. I posted pictures on face book of what it will look like once it is attached. It is nothing that will go unnoticed.
In the grand scheme of things it is a small price to pay. Thinking about having to deal with this was bothering me.
That combined with the idea of having to go through a spinal tap was not giving me a whole lot to look forward to.
Then my friends came through in a big way. As most people know I am a huge patriots fan. I got news that they got me tickets to the patriots game this Sunday. This is no small gesture considering the location of the tickets gotten on short notice. I am really excited for this and it came at just the right time since I was pretty bummed out. Even the game will only be about 3 hours the impact will last much longer.
I am feeling reinvigorated about taking this on. There will certainly be hard times to come, but knowing how many people have decided they have a stake in me getting better means more than words can describe.
Thanks for all the support. Although it has been appreciated, support does not have to come in grand gestures or surprises every time. Just letting me know you're there or hanging out from time to time is enough. But it seems as though you guys know me well enough to sense when in need a pick me up. Thanks again.
Saturday, December 31, 2011
Tuesday, December 27, 2011
Things are not great but that's nothing new and never boring
This morning I went into the hospital for what I knew was going to be a very long and hard day. As I mentioned in my last post, I was due to meet the director of the clinic, have an MRI, and then a spinal tap. It was going to be a long day of poking and prodding no matter what. After my MRI, I talked with the neurologist and we looked at my MRI and noticed that the tumor had grown a lot more than they anticipated since my last scan.
I'm not a neurologist but I had an idea that this was going on. Someone who has a brain tumor cannot be naive enough to think that having seizures, getting terrible headaches, and having trouble processing information is nothing. This does not mean it was not difficult to hear. The tumor was big enough that they rescheduled my spinal tap for friday. The results of the spinal tap will be the ultimate determination about whether I'll be eligible for the treatment.
The bottom line is that the growth is faster than what is the norm so the clock is accelerated. Meaning, untreated, this tumor will take my life inside of 6 months.
The good news is that the director informed me that this was no longer considered a trial but an FDA approved treatment method. that does not mean that it will work for me at all. It does mean that there had to be a good bit data that showed it was effective as a method of treatment in a large number of cases. Dr. Wong, the director of the clinic still thinks this treatment is a good option.
I am going talk to Dr. Q tomorrow about the scans and see what he thinks the best option is at this point. I'll be posting more often to update people because it is exhausting to have to relay this information to a lot of people.
I'm not a neurologist but I had an idea that this was going on. Someone who has a brain tumor cannot be naive enough to think that having seizures, getting terrible headaches, and having trouble processing information is nothing. This does not mean it was not difficult to hear. The tumor was big enough that they rescheduled my spinal tap for friday. The results of the spinal tap will be the ultimate determination about whether I'll be eligible for the treatment.
The bottom line is that the growth is faster than what is the norm so the clock is accelerated. Meaning, untreated, this tumor will take my life inside of 6 months.
The good news is that the director informed me that this was no longer considered a trial but an FDA approved treatment method. that does not mean that it will work for me at all. It does mean that there had to be a good bit data that showed it was effective as a method of treatment in a large number of cases. Dr. Wong, the director of the clinic still thinks this treatment is a good option.
I am going talk to Dr. Q tomorrow about the scans and see what he thinks the best option is at this point. I'll be posting more often to update people because it is exhausting to have to relay this information to a lot of people.
Sunday, December 25, 2011
Shipping off to Boston
I'm on my way to this trial in Beantown. It is christmas night and I am at my Dad's house in Wilmington. Tomorrow My sister and I will drive to her house, where we will meet my mom. My mom and I will go into to meet the director of the clinical trial on Tuesday. I'll fill out some paperwork and then get an MRI and a Spinal tap as late Christmas presents. Then I have appointments january 3rd and 4th which will be used to hook up the device and check back in to make sure it is hooked up correctly. From there I'll be allowed to continue any activity I can handle and then check back in monthly for a new scan. Treatment will continue as long as the tumor does not progress.
This was the hardest Christmas that I can remember. I had minor episodes on Wednesday and then again on Saturday. I spent the majority of christmas eve feeling out of it which carried over to christmas day. I felt awful, I had literally a splitting headache all day which served as constant notice that this is not getting better. Things are changing and getting harder and I know why. I could not get myself packed for this trip up to boston on my own. I could not figure out what I needed to bring or where it was.
This has been my greatest fear all along. When I encountered this second tumor I knew I was the under dog in this fight. I accepted that while I would not give in, tumors would likely be what killed me. What scares me is that I'll spend whatever time I have left confused, or as a different version of myself.
I should be back down in the Baltimore area by mid January. Wish I could say more but I don't know what to think right now.
This was the hardest Christmas that I can remember. I had minor episodes on Wednesday and then again on Saturday. I spent the majority of christmas eve feeling out of it which carried over to christmas day. I felt awful, I had literally a splitting headache all day which served as constant notice that this is not getting better. Things are changing and getting harder and I know why. I could not get myself packed for this trip up to boston on my own. I could not figure out what I needed to bring or where it was.
This has been my greatest fear all along. When I encountered this second tumor I knew I was the under dog in this fight. I accepted that while I would not give in, tumors would likely be what killed me. What scares me is that I'll spend whatever time I have left confused, or as a different version of myself.
I should be back down in the Baltimore area by mid January. Wish I could say more but I don't know what to think right now.
Monday, December 12, 2011
Why I'm headed up to Boston in a wicked hurry
So I was accepted to a to a clinic at Beth Israel Medical Center in Boston. This trial uses a device, The NovoTTF-100A, to hit the tumor with Electric fields in a similar to the way a magnet exerts forces on metallic particles within a magnetic field. TTFields are alternating electric fields of low intensity. This means that they change their direction repetitively many times a second. Since they change direction very rapidly (200 thousand times a second), they do not cause muscles to twitch, nor do they have any effects on other electrically activated tissues in the body (brain, nerves and heart). Since the intensities of TTFields in the body are very low, they do not cause heating. The breakthrough finding made by NovoCure was that finely tuned alternating fields of very low intensity, now termed TTFields (Tumor Treating Fields), cause a significant slowing in the growth of cancer cells.
Other cells in the body (normal healthy tissues) are affected much less than cancer cells since they multiply at a much slower rate if at all. In addition TTFields can be directed to a certain part of the body, leaving sensitive areas out of their reach.
The treatment will consist of wearing four electrically insulated electrodes on my head. After an initial short visit to the clinic for training and monitoring, I will be released to continue treatment at home where I can maintain a regular daily routine.
I am supposed to return monthly for re-evaluation for as long as the treatment is effective. Effective means that the tumor either reduces in size or shows no signs of growth. There is a lot of skepticism amongst those in the medical field about this type of treatment. The chances of it shrinking the tumor are pretty slim. This is one of the only phase III trials for people with a recurrent tumor like mine.
The reason we need to give this a try is because we tried the gold standard for treating this type of tumor and it did not work. There are other options but pursuing these before trying a clinical trial is likely to eliminate me from being eligible for a trial.
The point is that I need to focus on the good news and that is that I have been given a chance to try another form of treatment which may work. If it does not then we will likely try another type of chemotherapy and repeat radiation along with another surgery.
I am sorry that I have not gotten back to each one of you that has texted, called, or e-mailed but the truth is it is exhausting to have to deal with this and I think I am starting to feel the effects of this tumor. My left hand is less and less responsive each day; I have trouble on focusing on things; I have taken to carrying a notepad around with a pen because I am starting to forget things more often.
I have to be in Boston before December 27, which gives me less than 2 weeks before I have to be on the road. I appreciate all of the support, I have had a lot of people ask me to do things. I’m not bragging, but I won’t be able to accommodate everyone before I go particularly with the holidays being here. Please try to understand that I want to see as many people as possible. I should be around Baltimore this Saturday but anything beyond that will be difficult because I have my mom’s birthday and then Christmas.
Other cells in the body (normal healthy tissues) are affected much less than cancer cells since they multiply at a much slower rate if at all. In addition TTFields can be directed to a certain part of the body, leaving sensitive areas out of their reach.
The treatment will consist of wearing four electrically insulated electrodes on my head. After an initial short visit to the clinic for training and monitoring, I will be released to continue treatment at home where I can maintain a regular daily routine.
I am supposed to return monthly for re-evaluation for as long as the treatment is effective. Effective means that the tumor either reduces in size or shows no signs of growth. There is a lot of skepticism amongst those in the medical field about this type of treatment. The chances of it shrinking the tumor are pretty slim. This is one of the only phase III trials for people with a recurrent tumor like mine.
The reason we need to give this a try is because we tried the gold standard for treating this type of tumor and it did not work. There are other options but pursuing these before trying a clinical trial is likely to eliminate me from being eligible for a trial.
The point is that I need to focus on the good news and that is that I have been given a chance to try another form of treatment which may work. If it does not then we will likely try another type of chemotherapy and repeat radiation along with another surgery.
I am sorry that I have not gotten back to each one of you that has texted, called, or e-mailed but the truth is it is exhausting to have to deal with this and I think I am starting to feel the effects of this tumor. My left hand is less and less responsive each day; I have trouble on focusing on things; I have taken to carrying a notepad around with a pen because I am starting to forget things more often.
I have to be in Boston before December 27, which gives me less than 2 weeks before I have to be on the road. I appreciate all of the support, I have had a lot of people ask me to do things. I’m not bragging, but I won’t be able to accommodate everyone before I go particularly with the holidays being here. Please try to understand that I want to see as many people as possible. I should be around Baltimore this Saturday but anything beyond that will be difficult because I have my mom’s birthday and then Christmas.
Tuesday, December 6, 2011
Where we are
Hey everyone!
First let me say thanks for all the prayers and well wishing. I'm going to tell all of you everything I know to this point, I wish I could tell you more. At this point my doctors have decided to discontinue with the chemo therapy that I was doing. It obviously is not effective since another tumor has started to grow despite doing it. We may change chemo therapy drugs.
Starting radiation again is something we're going to explore. I have an appointment next thurs. with a radio-oncologist. He will evaluate the likelihood that radiation therapy will have any effect on the tumor.We did not do that in the first place because it is not proven to be effectiveon a tumor within the same radiation field as a previous tumor.
My oncologist has informed me that the options we're discussing are not likely to be solutions. Any effect that they may have is likely to just be temporary. So, I am not inclined to do things which will make whatever time I have left miserable.
I am exploring clinical trials throughout the country to see if I am eligible, but these are experiments and may not work even if I am admitted. This is the last front I have to put up a fight.
I don't know why but another surgery seems like it is not an option. I have reached out for second opinions and alternatives.
I am just being completely honest at this point. I am not quitting but options are limited. My time seems to be limited, I don't know how limited. I have given extra ordinary effort toward this fight but I am without the tools to continue to do anything but make each day count. I am so sorry I could not will this into the happy ending that all of us wanted this to be.
I am willing to talk with anyone but it is exhausting and extremely difficult to try to explain this. It is easier to text or e-mail
First let me say thanks for all the prayers and well wishing. I'm going to tell all of you everything I know to this point, I wish I could tell you more. At this point my doctors have decided to discontinue with the chemo therapy that I was doing. It obviously is not effective since another tumor has started to grow despite doing it. We may change chemo therapy drugs.
Starting radiation again is something we're going to explore. I have an appointment next thurs. with a radio-oncologist. He will evaluate the likelihood that radiation therapy will have any effect on the tumor.We did not do that in the first place because it is not proven to be effectiveon a tumor within the same radiation field as a previous tumor.
My oncologist has informed me that the options we're discussing are not likely to be solutions. Any effect that they may have is likely to just be temporary. So, I am not inclined to do things which will make whatever time I have left miserable.
I am exploring clinical trials throughout the country to see if I am eligible, but these are experiments and may not work even if I am admitted. This is the last front I have to put up a fight.
I don't know why but another surgery seems like it is not an option. I have reached out for second opinions and alternatives.
I am just being completely honest at this point. I am not quitting but options are limited. My time seems to be limited, I don't know how limited. I have given extra ordinary effort toward this fight but I am without the tools to continue to do anything but make each day count. I am so sorry I could not will this into the happy ending that all of us wanted this to be.
I am willing to talk with anyone but it is exhausting and extremely difficult to try to explain this. It is easier to text or e-mail
Monday, December 5, 2011
From Bad to Worse
Well at least I know now why I had another seizure. As many of you probably have heard I have another tumor growth which has shown up. I just talked to my Oncologist at about 10 this morning so every thing is still really new.
What I am going to say is not easy to say and it does not mean that I giving in or giving up. The truth is the clock is now ticking. I’m trying to be realistic.
The chemotherapy that I was doing is not effective. If it was, another tumor would not have started to grow. Another surgery may be an option, I’m not sure at this point. My Oncologist would like to try radiation to see what it can do, but we did not do radiation in the first place because the site of the tumor was in the radiation field from last time and it is not proven effective to use multiple times in the same field.
I am seeing if I am eligible for a clinical trial at Duke. If so I would have another surgery so they could study the tumor and work up a vaccine to treat whatever cells were left after surgery. This seems like the option with the highest probability of having an impact, but it is by no means a sure thing and I may not even be a candidate.
I will continue to do whatever is reasonable to try to beat this but everyone should realize that the odds are not in my favor this time. My Neurologist and Oncologist, whom I have a lot of faith in, are out of reassuring answers regarding treatments that have worked for a large number of others. They are making suggestions about what they want to try.
None of this has been fair or pleasant. I came into this fight with my head held high and I plan on continuing that way and leaving that way. Part of that is continuing to fight and to try any treatment that seems reasonable. I don’t want to spend my time being sad or angry, even though I am. I’m so sorry if me saying this really hurts or upsets people but I just want everyone to know the truth about what’s going on.
What I am going to say is not easy to say and it does not mean that I giving in or giving up. The truth is the clock is now ticking. I’m trying to be realistic.
The chemotherapy that I was doing is not effective. If it was, another tumor would not have started to grow. Another surgery may be an option, I’m not sure at this point. My Oncologist would like to try radiation to see what it can do, but we did not do radiation in the first place because the site of the tumor was in the radiation field from last time and it is not proven effective to use multiple times in the same field.
I am seeing if I am eligible for a clinical trial at Duke. If so I would have another surgery so they could study the tumor and work up a vaccine to treat whatever cells were left after surgery. This seems like the option with the highest probability of having an impact, but it is by no means a sure thing and I may not even be a candidate.
I will continue to do whatever is reasonable to try to beat this but everyone should realize that the odds are not in my favor this time. My Neurologist and Oncologist, whom I have a lot of faith in, are out of reassuring answers regarding treatments that have worked for a large number of others. They are making suggestions about what they want to try.
None of this has been fair or pleasant. I came into this fight with my head held high and I plan on continuing that way and leaving that way. Part of that is continuing to fight and to try any treatment that seems reasonable. I don’t want to spend my time being sad or angry, even though I am. I’m so sorry if me saying this really hurts or upsets people but I just want everyone to know the truth about what’s going on.
Friday, December 2, 2011
This will not be an inspirational blog entry. For those of you who think anything nice about me I would not recommend reading any further the summary of it is I’m struggling. This is more of a confession about how I really feel. It will be whiny, and contain mostly self pity. I’m not fishing for compliments or money. This is the Blog entry I would not allow myself to write before this. It is all the thoughts that I’m ashamed of that I have never allowed myself to voice out loud. If I am going to keep this blog up it cannot be all inspiration and good stuff. It has to be honest so here goes
I never wanted to be any one’s hero. I didn’t want to be an inspiration. I just want to the average to below average person I was before all of this. Unfortunately, I don’t get that choice. In Fact, I don’t have the luxury of choices at all any more. It is “take this, go here, have blood taken on this day…”
I had a seizure yesterday at work. I did not lose consciousness, but I felt confused and my left arm was shaking involuntarily. I was able to ask someone in the cubicle next to me to help me out and communicate that I was having a seizure. She helped me get into a chair and it was a few minutes before I regained control of my arm and my full awareness.
I have anti-seizure meds, which should keep me from having further seizures, but the whole situation has really irritated me. I was supposed to go visit my sister this weekend but my Neurologist said he did not want me getting on a plane given what had just happened. Pardon my language; THIS FUCKING SUCKS.
The simple answer, “is just take the meds and you’ll be fine.” The whole reason I stopped is because I’m tired of all of this.
It is yet another reminder that I’m not capable of living a normal 27 year old’s life.
I have tried to take everything in stride, while taking everything one step at a time, and keep my chin up, and keep moving forward, and keep on swimming, and not feel sorry for myself and know that good things come to good people and blah blah blah.
As far as faith, I have none. I feel either abandoned by God or cursed by him.
The truth is that all of you guys inspire me. I don’t have a thing in my life that I like except for the people in it. My friends and Family are really the only things that make me peel myself out of bed every morning. I have limited self pride. I have 0 resources. I have almost no belongings. Lately, I’m struggling to see what purpose I have.
I wake up these days believing that I won’t have as long a life as 95% of the people I know and I grind out what I consider a fairly unimpactful existence. In most aspects of life I am average, and my health issues seem to be preventing me from being able to use the gifts I do have to their fullest extent.
I find myself being jealous of the accomplishments and successes of others and I hate it. I am full of rage and erupt about tiny things like dropped phone calls or losses by my favorite teams. I have lost my way. I don’t know where I’m going or what I’m doing any more.
The reason I enjoy running so much is because I just get to turn my mind off for however long I’m out there. Now I won’t be able to run with out the fear that I may collapse in a quivering heap.
I’ll spend a quarter of the next 6 months feeling absolutely terrible doing treatment which may or may not work. I'
This entry has all the makings of someone about to do something crazy, but I’m here to assure I won’t. I’ll keep living this meager existence for however long I have because I love all of you that much. I’m sure most of you disagree with what I’ve said and that's fine, this is just how I feel right this moment.
I never wanted to be any one’s hero. I didn’t want to be an inspiration. I just want to the average to below average person I was before all of this. Unfortunately, I don’t get that choice. In Fact, I don’t have the luxury of choices at all any more. It is “take this, go here, have blood taken on this day…”
I had a seizure yesterday at work. I did not lose consciousness, but I felt confused and my left arm was shaking involuntarily. I was able to ask someone in the cubicle next to me to help me out and communicate that I was having a seizure. She helped me get into a chair and it was a few minutes before I regained control of my arm and my full awareness.
I have anti-seizure meds, which should keep me from having further seizures, but the whole situation has really irritated me. I was supposed to go visit my sister this weekend but my Neurologist said he did not want me getting on a plane given what had just happened. Pardon my language; THIS FUCKING SUCKS.
The simple answer, “is just take the meds and you’ll be fine.” The whole reason I stopped is because I’m tired of all of this.
It is yet another reminder that I’m not capable of living a normal 27 year old’s life.
I have tried to take everything in stride, while taking everything one step at a time, and keep my chin up, and keep moving forward, and keep on swimming, and not feel sorry for myself and know that good things come to good people and blah blah blah.
As far as faith, I have none. I feel either abandoned by God or cursed by him.
The truth is that all of you guys inspire me. I don’t have a thing in my life that I like except for the people in it. My friends and Family are really the only things that make me peel myself out of bed every morning. I have limited self pride. I have 0 resources. I have almost no belongings. Lately, I’m struggling to see what purpose I have.
I wake up these days believing that I won’t have as long a life as 95% of the people I know and I grind out what I consider a fairly unimpactful existence. In most aspects of life I am average, and my health issues seem to be preventing me from being able to use the gifts I do have to their fullest extent.
I find myself being jealous of the accomplishments and successes of others and I hate it. I am full of rage and erupt about tiny things like dropped phone calls or losses by my favorite teams. I have lost my way. I don’t know where I’m going or what I’m doing any more.
The reason I enjoy running so much is because I just get to turn my mind off for however long I’m out there. Now I won’t be able to run with out the fear that I may collapse in a quivering heap.
I’ll spend a quarter of the next 6 months feeling absolutely terrible doing treatment which may or may not work. I'
This entry has all the makings of someone about to do something crazy, but I’m here to assure I won’t. I’ll keep living this meager existence for however long I have because I love all of you that much. I’m sure most of you disagree with what I’ve said and that's fine, this is just how I feel right this moment.
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