Big problem in dealing with all of this is my level of anxiety and level of patience is thin. I am doing my best to try to deal with it. Obviously, I have a lot going on. My biggest concerns are in going through all of this is that in dealing with all of this I will lose track of if who I am. That is what weighs on my mind the most. I feel that I am changing from the person that all of you have decided to support and it scares me.
There are multiple levels to this fight. There are things about this fight when I am on my own. On another level I most definitely am not alone. I have unbelievable friends and family supporting me.
My anxiety and patience issues lead me to lash out at times. The biggest problem with that is the people who are most often on the receiving end are the ones I interact with the most. This means these are the people who likely trying to help me the most. Which makes me even more upset that I am having problems controlling myself. Please accept my apology in advance of any slights.
Just so you understand why I get so tense I want to try to give everyone an idea of what I am thinking about.
My left hand and left leg are getting less and less coordinated on almost a daily basis. I find I am able to do less and less each week. My real concern is about how long I’ll be able to do anything with my left side.
With the electrodes on my head I am not supposed to sweat because it causes them to lose their grip and become painful and ineffective. This means I can only exercise when I change them out, which is about 3 times a week. I can't change them myself so I have to be close to someone who has watched them changed. For someone who was running/working out 5-6 times a week it is a big adjustment.
The meds that I am on to control the side effects of the tumor increase my level of anxiety, and also cause me to be hungry beyond belief. Between not working out and always being hungry I have put on quite a bit of weight. The weight, combined with the device make me very uncomfortable with myself in public. I am also frustrated with my inability to do things with this new big belly I am carrying around.
I don’t sleep well at all. I have only slept deep enough to have a dream once since I got this device attached.
I went to the Patriots and Ravens game this weekend which was a really fun but taxing experience.
When I go into public or do activities it takes a lot of planning. It takes me about 30- 40 minutes of planning and prep to be able to leave the house comfortably. I still have not come up with a quick explanation for what it is I am carrying around for when strangers ask. May seem unnecessary, but people ask and it sucks to not have something to say because I have always had an answer for everything. I have actually never really given as much thought about what strangers think and that bothers me as well.
As I you can see I have a lot on my mind and I am trying to deal but it is no easy task. Please give me what I can't right now, patience.
Tuesday, January 24, 2012
Thursday, January 12, 2012
The Situation
I have probably not been as informative about what is going on up here with this therapy and in general as I should have been. This therapy involves me using a device made by a company called Novocure. Novocure is an oncology research company. They research and explore oncology options beyond chemo therapy, radiation, and surgery.
My tumor has grown faster than we first anticipated. This is why I had been having headaches and seizures before coming up here. The symptoms are being controlled right now by anti-seizure meds and steroids. Controlled, but not stopped. My left hand/arm is less coordinated and feels numb or asleep at certain parts of the day.
The therapy I am pursuing is what is called TTF. I don’t fully understand the science behind it myself, it requires me to wear sticky electrode patches on my scalp, which need to be undone and reattached every 2-3 days. These patches are attached to a machine which generates the TTF(tumor treatment field). The device weighs about 5 lbs. and runs on battery packs which weigh another 5 pounds. It is very conspicuous, and cumbersome, and bothersome. The battery packs last for about 3 hours at a time.
In essence I am carrying around a 10 pound device which has 3-4 hrs of battery life in a purse that holds nothing besides the device.
The electrodes cause skin irritation, and on occasion cause a burning sensation on my scalp.
I have a braid of cables, which hangs, off my head and attaches to the device, basically like the movie avatar. The goal for treatment is to have the device running for 80% of the time it is attached. I can plug the device into a wall charger but then I limited in how far from an outlet I can walk. More treatment is better but 80% is what the company would really like to see.
At this point I don’t know anything. I don’t know that this will work. The only certainty is that if I don’t do anything this tumor will kill me.; one time table said within 6 months. I have high hopes this will work. But if we knew this worked it would have been what we did first. I may have to tolerate this device or another form of treatment forever. It may take some time to make a determination of whether this therapy is effective. In the mean time the tumor will likely grow and if the symptoms get worse then another surgery may become necessary. Surgery was not the option initially because, it limits the other therapies I can pursue. In the time it takes to heal from surgery the tumor could grow back and I would be in the same spot as I am now but have risked another brain surgery. There may come a day when I’m “in the clear” but to think that way may just be wishful thinking
At this point I need to have everyone understand what I have come to understand these last few weeks: I will probably spend the rest of my life fighting against cancer. Not sure how long that will be but that’s the situation. This is literally a fight for my life and I won’t be able to look myself in the mirror if I can’t tell myself I tried everything that seemed reasonable. Not sure how long that will be but that is the situation. This will not be an easy or convenient life, but it is what I have to do. Concepts of easy or convenient left a long time ago. My activities and energy will be devoted to trying to beat this.
I’m telling all of you this because I need you to understand that I’m going to be going through a lot of changes as a person. I’m anxious, upset, and impatient. I’m not happy with the changes that I’ll have to make because I feel like, in some way, they’re going to change part of me. Although I may have been awkward or stood out a little before, the truth is I considered my ability to be comfortable in my own skin one of my best traits. That is no longer the case.
Doing activities of any kind will be a big deal for me, because I’m not sure what I can do and the planning and effort it takes just to leave the house are fairly significant at this point. Fighting like this will take it’s toll on my ability to be the friend that I would really like to be.
I know all of you have told me that I don’t owe you anything for your support. Unfortunately, that’s not the truth. I promised my friends and my family that I would never quit this fight and I won’t.
My tumor has grown faster than we first anticipated. This is why I had been having headaches and seizures before coming up here. The symptoms are being controlled right now by anti-seizure meds and steroids. Controlled, but not stopped. My left hand/arm is less coordinated and feels numb or asleep at certain parts of the day.
The therapy I am pursuing is what is called TTF. I don’t fully understand the science behind it myself, it requires me to wear sticky electrode patches on my scalp, which need to be undone and reattached every 2-3 days. These patches are attached to a machine which generates the TTF(tumor treatment field). The device weighs about 5 lbs. and runs on battery packs which weigh another 5 pounds. It is very conspicuous, and cumbersome, and bothersome. The battery packs last for about 3 hours at a time.
In essence I am carrying around a 10 pound device which has 3-4 hrs of battery life in a purse that holds nothing besides the device.
The electrodes cause skin irritation, and on occasion cause a burning sensation on my scalp.
I have a braid of cables, which hangs, off my head and attaches to the device, basically like the movie avatar. The goal for treatment is to have the device running for 80% of the time it is attached. I can plug the device into a wall charger but then I limited in how far from an outlet I can walk. More treatment is better but 80% is what the company would really like to see.
At this point I don’t know anything. I don’t know that this will work. The only certainty is that if I don’t do anything this tumor will kill me.; one time table said within 6 months. I have high hopes this will work. But if we knew this worked it would have been what we did first. I may have to tolerate this device or another form of treatment forever. It may take some time to make a determination of whether this therapy is effective. In the mean time the tumor will likely grow and if the symptoms get worse then another surgery may become necessary. Surgery was not the option initially because, it limits the other therapies I can pursue. In the time it takes to heal from surgery the tumor could grow back and I would be in the same spot as I am now but have risked another brain surgery. There may come a day when I’m “in the clear” but to think that way may just be wishful thinking
At this point I need to have everyone understand what I have come to understand these last few weeks: I will probably spend the rest of my life fighting against cancer. Not sure how long that will be but that’s the situation. This is literally a fight for my life and I won’t be able to look myself in the mirror if I can’t tell myself I tried everything that seemed reasonable. Not sure how long that will be but that is the situation. This will not be an easy or convenient life, but it is what I have to do. Concepts of easy or convenient left a long time ago. My activities and energy will be devoted to trying to beat this.
I’m telling all of you this because I need you to understand that I’m going to be going through a lot of changes as a person. I’m anxious, upset, and impatient. I’m not happy with the changes that I’ll have to make because I feel like, in some way, they’re going to change part of me. Although I may have been awkward or stood out a little before, the truth is I considered my ability to be comfortable in my own skin one of my best traits. That is no longer the case.
Doing activities of any kind will be a big deal for me, because I’m not sure what I can do and the planning and effort it takes just to leave the house are fairly significant at this point. Fighting like this will take it’s toll on my ability to be the friend that I would really like to be.
I know all of you have told me that I don’t owe you anything for your support. Unfortunately, that’s not the truth. I promised my friends and my family that I would never quit this fight and I won’t.
Wednesday, January 4, 2012
This may sound crazy but Told myself this when I woke up this morning
Dear Cancer,
I know what you want. I know you want me to curl up and cry and just give up. There will be days when I do that, but they will be limited. For each day I have where I curl up and cry I’ll have another 2 days where I am rejuvenated to beat you.
You snuck into my life and have tried to make yourself part of it. You’re not my friend, you’re not my family, you do not get to
decide how I live my life. You’re a pest, a nuisance, and an unwelcome tenant.
The problem for you is this is not your decision. This is still my body. No matter how much you might like to disagree. I thought I made this clear to you twice before. You can keep coming back and I’ll keep telling you to go fuck yourself. You can make it as hard as you want, but the harder you try, the harder I’ll fight.
I’m not gonna do the job for you. You’ll have to literally kill me before this is over, and you might. But the lines have been drawn and I’m gonna keep crossing the ones you draw until I can’t.
This is your 3rd eviction notice.
Your host,
John Petrovick
I know what you want. I know you want me to curl up and cry and just give up. There will be days when I do that, but they will be limited. For each day I have where I curl up and cry I’ll have another 2 days where I am rejuvenated to beat you.
You snuck into my life and have tried to make yourself part of it. You’re not my friend, you’re not my family, you do not get to
decide how I live my life. You’re a pest, a nuisance, and an unwelcome tenant.
The problem for you is this is not your decision. This is still my body. No matter how much you might like to disagree. I thought I made this clear to you twice before. You can keep coming back and I’ll keep telling you to go fuck yourself. You can make it as hard as you want, but the harder you try, the harder I’ll fight.
I’m not gonna do the job for you. You’ll have to literally kill me before this is over, and you might. But the lines have been drawn and I’m gonna keep crossing the ones you draw until I can’t.
This is your 3rd eviction notice.
Your host,
John Petrovick
Tuesday, January 3, 2012
Worse than I imagined
This device has been awful today. I am sure iwill make adjustments but right now this is horrendous. I cannot imagine it being worse unless it actually caused some sort of physical pain. It is incredibly annoying. I have an array of electrodes on my head that is powered by a battery pack which is about a 1 ft square package. It weighs about 10 lbs. And has a life of about 3 hrs. I have 3 backup batteries which sit on a charger that weighs about 20 lbs. I can plug into a standard 3 prong outlet but I can't get far from the outlet. The array makes my head warm and I have to instantly lay attention for low battery alerts or disconnection alerts.
As is plainly obvious I am less than thrilled about this. I have no idea how I'll deal with this. Irate the thought of this and n it may not even work. If it does work. I'll have to have it going 80% of the time.
Mean time the coordination in my left hand is not getting better, I'm having trouble seeing as far as I once did and I'm not sleeping well.
2012 started off on an amazing note. My friends sending ne to the patriots game was awesome. As high as I was from that I'm feeling really low right now. I have the terrible feeling of having limited time left and not wanting to do anything all at once because I have this device now. It makes for high anxiety.
Seriously questioning whether this was worth it or not. If it doesn't help than it is an incredible burden that has wasted valuable time. Just feeling very confused.
As is plainly obvious I am less than thrilled about this. I have no idea how I'll deal with this. Irate the thought of this and n it may not even work. If it does work. I'll have to have it going 80% of the time.
Mean time the coordination in my left hand is not getting better, I'm having trouble seeing as far as I once did and I'm not sleeping well.
2012 started off on an amazing note. My friends sending ne to the patriots game was awesome. As high as I was from that I'm feeling really low right now. I have the terrible feeling of having limited time left and not wanting to do anything all at once because I have this device now. It makes for high anxiety.
Seriously questioning whether this was worth it or not. If it doesn't help than it is an incredible burden that has wasted valuable time. Just feeling very confused.
Saturday, December 31, 2011
Timing is everything
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.
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.
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.
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