My blog entries are getting shorter. This is because I'm actually dictating them now. My left arm left hand left leg are so bad that I really can't stand it to type anymore.
It should be understood this surgery should relieve some of the symptoms. But I am also risking a lot of things with this surgery. I may be in a wheelchair or have to use something else before I know it. I have decided that I should no longer be driving given my symptoms. This is not easy for me to accept that at 28 i am like a life alert commercial. I am not comfortable with how I appear in public right now.
i am slightly embarrassed about the fact that my legs do not work like I want them to. I have fallen over three
times in the last two days. And then I had trouble picking myself up. The activities that I can do right now are very limited.
This week will be spent in appointments and with family. Surgery has been scheduled for Thursday now. I believe there is a get together tomorrow at bill Bateman's. This will be the last opportunity really to see me before surgery. I am no longer capable of doing things on last minute notice. Please help me out and give me plenty of notice if you want to stop by or do anything.
Saturday, January 28, 2012
Friday, January 27, 2012
The Situation/plan
The tumor has grown. No news there. I need to make it clear this is our plan. There are still a lot of risks and there is no guarantee this will work. We're pursuing our best options at this point. I am convinced this is the best course of action given the situation. The plan now is that Dr. Q will perform surgery next Friday. Surgery will not remove all the cancer cells, but will be used to reduce the symptoms and buy me the time i need to see what treatment may be effective.
After I heal from surgery. I will resume using the device from Boston in conjunction with a new chemotherapy drug called CCNU. CCNU has some side effects which will be difficult to tolerate. Eventually, we will add another drug called Avastin into the therapy regimen. Avastin is a drug which has had success in preventing swelling and growth with tumors like mine. We did not opt for it initially because the side effects, include an inability to have blood clot properly. Avastin could have prevented me from pursuing surgery and other options in a timely manner. This also why it will not be implemented immediately after surgery.
I should be out of the hospital tomorrow.
After I heal from surgery. I will resume using the device from Boston in conjunction with a new chemotherapy drug called CCNU. CCNU has some side effects which will be difficult to tolerate. Eventually, we will add another drug called Avastin into the therapy regimen. Avastin is a drug which has had success in preventing swelling and growth with tumors like mine. We did not opt for it initially because the side effects, include an inability to have blood clot properly. Avastin could have prevented me from pursuing surgery and other options in a timely manner. This also why it will not be implemented immediately after surgery.
I should be out of the hospital tomorrow.
Thursday, January 26, 2012
Breaking point
I had a seizure at my parent's house at around 5:30. Frankly I wish I had not told anyone because now I am in the hospital. I don't know why I have to be here and I don't know how long I'll be here. I am truly miserable. I hate it. I won't sleep well. Apparently I may have surgery next week, Dr. Q is out of town until thursday. I'm not sure what that means as far as my hospital stay and or date of surgery still have not gotten a definite answer on that.
I am really struggling with this: bad beds, worse food, general uncertainty about what is happening. I expect to know more in a couple days. I'll keep everyone posted.
I am really struggling with this: bad beds, worse food, general uncertainty about what is happening. I expect to know more in a couple days. I'll keep everyone posted.
Wednesday, January 25, 2012
MRI Results; It's just news
Got my MRI I results. They showed that there was significant tumor growth. I don't know exactly what that means. I don't know if that means it has happened faster than expected or if this has been pretty much as expected. The news that there is growth is not unexpected to me. As I said my left arm and leg are very uncoordinated and when symptoms pick up it's just naïve to think that nothing is wrong. So this is pretty much what I expected to hear. So I don't look at this as good news but just news. When we attached this device My Dr. said it may take some time before we knew if it was going to work. My doctors consulted when I started this with the understanding that things may get worse. They discussed what may be needed if that was the case. I don't know that we can say this therapy is not going to work based on this news. I'm not going to make guesses right now because I feel like that would really drive me crazy. I have to wait and hear what the smart people actually think. I should hear from my neurologist in Boston tomorrow, My oncologist early next week and from there we'll make a plan that I'll follow.
I am not taking it as good or bad news right now. Obviously I would have preferred to hear that there was no growth. I don't have a lot of answers right now. Still have to talk with my doctors about what we think the best treatment is. We will be in discussions next week about what we think the best course of action is. I'm not going to waste to guessing or speculating. I will keep pursuing treatments until they tell me I can't. There will be a next step I just don't know what that is right now.
Just so everyone understands, I will keep following and searching for treatments until they tell me I can't or my heart is no longer beating.
I am not taking it as good or bad news right now. Obviously I would have preferred to hear that there was no growth. I don't have a lot of answers right now. Still have to talk with my doctors about what we think the best treatment is. We will be in discussions next week about what we think the best course of action is. I'm not going to waste to guessing or speculating. I will keep pursuing treatments until they tell me I can't. There will be a next step I just don't know what that is right now.
Just so everyone understands, I will keep following and searching for treatments until they tell me I can't or my heart is no longer beating.
Tuesday, January 24, 2012
Problems
Tomorrow I have an MRI. I am not a doctor but this is not going to be good news. I am likely to find out that my tumor has grown despite this treatment. This is not me quitting. Tomorrow I'll find out what I need to do next to keep on going. I think It would just be naïve to think that nothing is going on considering my symptoms. If you feel the need to pray or tell me that you're going to pray for me that I am given the guidance to make a good decision about what to do next. This is not good news. Tomorrow a tech will likely see that my tumor has grown significantly. I won't get all the answers tomorrow because it will take time for my doctors to review and make decisions. It would be foolish to think that everything is just going to be fine. I will have a lot of work to do. These may be the best days I have left right now. But I'll have days left.
Tense Times
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.
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.
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.
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