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.
Thursday, October 6, 2011
Limits
I apologize for not getting a new blog post up in a long time. I was reminded by a friend that I was overdue for a post. Feedback certainly encourages me to post more frequently.
As everyone can see the fundraising is going great and we still have a week left to get more donations together. Please try to circulate the letter/flyer that I worked up to anyone you can think of. Remember, I do not care about the size of the donation. I just want to see a huge number of donations.
This last chemo session was particularly difficult. I felt so good before this session started. I did not get to start this cycle when I would have liked to. My oncologist informed me that my blood counts had not bounced back to where he would like them to be before each session so I was delayed in starting. This was a major concern for two reasons. First, because I had the cycles timed out so that I would be as far away from the 3rd cycle as I could be on race day. Second, because it was a new hiccup I had to deal with. I had to come to the realization that I cannot control when I get to start my chemotherapy cycles.
When I did start, everything seemed the same as usual for the first three days. Day four I noticed that I felt nausea throughout the entire day as opposed to just feeling it in the morning and after taking my dose at night. Taking my last dose was very problematic. I gagged several times in trying to get each of the three pills down. I still shutter thinking about it right now. Tuesday morning I woke up and tried to start to get ready for work but could not make any progress because I had to keep running back to the bathroom and heaving. It was painful because as I mentioned in my last post there was nothing in my stomach to get up.
I still do not feel normal. I have had a lingering sense that I might throw up for 2 days now. Just think of that feeling you have when you’re extremely nervous because you’re not prepared for something really important. I have to step out side for air to try to prevent the pending threat.
Before this cycle started I was tricking myself into thinking that if I trained hard enough I could actually do the half in 1:30. Now I’m realizing how limited I am. We’re a little more than a week away from the race and as any runner can sympathize after taking a week off I feel pudgy and out of shape. I feel right now that I’d be lucky to finish the half.
I am limited because I can’t think my way out of everything with positive thoughts. As crazy as it might sound, somewhere along the way I had actually convinced myself that if I wanted anything badly enough I could make it happen.
The truth is I cannot will my cancer to go away and never come back. Nor can I force my body to be ready for a chemo cycle when it is convenient for me. These may seem like obvious statements to most of you but to me, these are hard truths I have had to come to accept in this last month
While that is certainly the case for some things I can still will myself to do more. I find it a useful exercise to take note of the things that I can control in my life. I can control how many days a week I run. I can control what time I get up and put those miles in. I can control how many people I tell about my fundraiser. I can control the attitude I face these challenges with.
I find a lot of inspiration in the life of Steve Prefontaine. For those who don’t know he was considered among the most talented American distance runners ever. However, if you asked him just what his talent was he’d gladly tell you that he just had more guts than any other person. I have always kept this mentality in the back of my head when dealing with whatever cancer throws my way. If I don’t allow something to bother me than it won’t. Now I realize that I am limited in that respect.
However, Prefontaine’s coach once reminded him “Everyone has limits. Steve be thankful for your limits because you’re as limitless as anyone.” I just need to find the balance between guts and limits.
On an entirely separate note, Steve Jobs’ death was a tragedy. He was the Howard Hughes, or Thomas Edison of our time. In a time when it is hard enough for most of us to stay current with technology he had a way seeing ahead and shaping the curve. He told us what we needed/wanted before we even knew we did. The lesson to take from all of this is that we need a cure to this ASAP!
Cancer does not care about your brilliance or wealth or kindness. Steve Jobs and I were in the same boat and unfortunately more people join this fraternity every day. Those of you who have contributed and supported me have decided that you have had enough! Now we all need to help others decide that they want to say they have had enough as well.
As everyone can see the fundraising is going great and we still have a week left to get more donations together. Please try to circulate the letter/flyer that I worked up to anyone you can think of. Remember, I do not care about the size of the donation. I just want to see a huge number of donations.
This last chemo session was particularly difficult. I felt so good before this session started. I did not get to start this cycle when I would have liked to. My oncologist informed me that my blood counts had not bounced back to where he would like them to be before each session so I was delayed in starting. This was a major concern for two reasons. First, because I had the cycles timed out so that I would be as far away from the 3rd cycle as I could be on race day. Second, because it was a new hiccup I had to deal with. I had to come to the realization that I cannot control when I get to start my chemotherapy cycles.
When I did start, everything seemed the same as usual for the first three days. Day four I noticed that I felt nausea throughout the entire day as opposed to just feeling it in the morning and after taking my dose at night. Taking my last dose was very problematic. I gagged several times in trying to get each of the three pills down. I still shutter thinking about it right now. Tuesday morning I woke up and tried to start to get ready for work but could not make any progress because I had to keep running back to the bathroom and heaving. It was painful because as I mentioned in my last post there was nothing in my stomach to get up.
I still do not feel normal. I have had a lingering sense that I might throw up for 2 days now. Just think of that feeling you have when you’re extremely nervous because you’re not prepared for something really important. I have to step out side for air to try to prevent the pending threat.
Before this cycle started I was tricking myself into thinking that if I trained hard enough I could actually do the half in 1:30. Now I’m realizing how limited I am. We’re a little more than a week away from the race and as any runner can sympathize after taking a week off I feel pudgy and out of shape. I feel right now that I’d be lucky to finish the half.
I am limited because I can’t think my way out of everything with positive thoughts. As crazy as it might sound, somewhere along the way I had actually convinced myself that if I wanted anything badly enough I could make it happen.
The truth is I cannot will my cancer to go away and never come back. Nor can I force my body to be ready for a chemo cycle when it is convenient for me. These may seem like obvious statements to most of you but to me, these are hard truths I have had to come to accept in this last month
While that is certainly the case for some things I can still will myself to do more. I find it a useful exercise to take note of the things that I can control in my life. I can control how many days a week I run. I can control what time I get up and put those miles in. I can control how many people I tell about my fundraiser. I can control the attitude I face these challenges with.
I find a lot of inspiration in the life of Steve Prefontaine. For those who don’t know he was considered among the most talented American distance runners ever. However, if you asked him just what his talent was he’d gladly tell you that he just had more guts than any other person. I have always kept this mentality in the back of my head when dealing with whatever cancer throws my way. If I don’t allow something to bother me than it won’t. Now I realize that I am limited in that respect.
However, Prefontaine’s coach once reminded him “Everyone has limits. Steve be thankful for your limits because you’re as limitless as anyone.” I just need to find the balance between guts and limits.
On an entirely separate note, Steve Jobs’ death was a tragedy. He was the Howard Hughes, or Thomas Edison of our time. In a time when it is hard enough for most of us to stay current with technology he had a way seeing ahead and shaping the curve. He told us what we needed/wanted before we even knew we did. The lesson to take from all of this is that we need a cure to this ASAP!
Cancer does not care about your brilliance or wealth or kindness. Steve Jobs and I were in the same boat and unfortunately more people join this fraternity every day. Those of you who have contributed and supported me have decided that you have had enough! Now we all need to help others decide that they want to say they have had enough as well.
Sunday, August 28, 2011
What it's like to walk in my shoes
I am in the middle of my 2nd chemo session. I think this makes the 10th session I have had overall. This counting the 8 months I did last time I was battling a brain tumor. I guess this makes me kind of an experienced hand at all of this. Let me make something clear: THIS SUCKS!
I’m sure I didn’t really need to tell anyone this but I just want to make it crystal clear how bad this is. I generally only share as much as I think people can handle because if every time people checked in on how I was doing, I actually told them I feel like people might stop asking.
A lot of people are curious what it feels like to go through this. It is an experience that I would not wish on the people I think the least of. The best terms to put this in is to compare it to a condition that almost everyone can relate to. I am fairly certain that almost all of us have had a few hangovers in our lives. It is the equivalent to having a hangover that makes you swear you won’t ever drink again. You don’t get the fun of the night before though.
The night before consists of timing your dinner so that you can take your pills on an empty stomach to avoid throwing up while you’re asleep or while you’re trying to go to sleep. You also are trying to time the taking of the meds to a moment when you can fall asleep quickly so you won’t have to be awake when they really take hold. When you take the Temodar you get a taste in your mouth as if you have swallowed some sort of toxic chemical concoction, because you have. You wake up with a headache which you are not sure how to get rid of. You feel like you’re on the verge of throwing up but you haven’t gotten to eat since about 7 the night before. This means that if you try to throw up you’ll get nothing but dry heaves. And throwing up will not make you feel any better anyway because by this time the chemo drugs are no longer in your stomach but have been absorbed into your body. When you finally feel as though you can peel yourself out of bed without having your legs buckle from being dizzy, you have a debate with yourself about whether eating something is a good idea. Throughout the day you feel as though you haven’t slept for days and you get angry with yourself about how little you feel you can accomplish. As the day winds down you start anticipating your next dose and realize that tomorrow is going to be worse than today because the effects are cumulative. The closer you get to the end the more the drugs have built up in your body and the worse you feel. So in effect the closer you get to the end of the 5 days the harder it gets push through.
The entire week of treatment you're terrified about ending up some place where you might vomit and not have access to a bathroom. The treatment also throws your digestive tract into a tailspin. The naturally occurring bacteria which helps with proper digestion is killed by the chemo drugs. This persists into the next week without drugs.
I feel better each day that puts me further from my last treatment. The catch 22 of the situation is that the better you start to feel the more the clock is ticking in your head. The better you feel the closer you are to the next round of treatment. You will never get back to the 100% that you once knew and always took for granted.
This description is not to conjure up pity or praise from people, but rather to make sure everyone understands why it is important to support research to find better solutions. I hope that I’m around to see the day when solutions like surgery and chemotherapy and radiation are thought of as archaic routes to take in the treatment of cancer.
As I said I would not wish this on anyone but unfortunately all of you will know or already know another person that has to go through something similar or something worse. In some cases some of you will have to go through something like this. Right at this moment we all have the opportunity to try to get ahead of this. The amount of the donations is not what’s important to me. As I said previously, I would prefer a million small donations to a few large ones. In order to donate you can send cash or checks to me at 506 S Curley street, Baltimore Md,.21224. It is probably easiest for people to make donations on: http://www.active.com/donate/qquest/johnpetrovick
I’m sure I didn’t really need to tell anyone this but I just want to make it crystal clear how bad this is. I generally only share as much as I think people can handle because if every time people checked in on how I was doing, I actually told them I feel like people might stop asking.
A lot of people are curious what it feels like to go through this. It is an experience that I would not wish on the people I think the least of. The best terms to put this in is to compare it to a condition that almost everyone can relate to. I am fairly certain that almost all of us have had a few hangovers in our lives. It is the equivalent to having a hangover that makes you swear you won’t ever drink again. You don’t get the fun of the night before though.
The night before consists of timing your dinner so that you can take your pills on an empty stomach to avoid throwing up while you’re asleep or while you’re trying to go to sleep. You also are trying to time the taking of the meds to a moment when you can fall asleep quickly so you won’t have to be awake when they really take hold. When you take the Temodar you get a taste in your mouth as if you have swallowed some sort of toxic chemical concoction, because you have. You wake up with a headache which you are not sure how to get rid of. You feel like you’re on the verge of throwing up but you haven’t gotten to eat since about 7 the night before. This means that if you try to throw up you’ll get nothing but dry heaves. And throwing up will not make you feel any better anyway because by this time the chemo drugs are no longer in your stomach but have been absorbed into your body. When you finally feel as though you can peel yourself out of bed without having your legs buckle from being dizzy, you have a debate with yourself about whether eating something is a good idea. Throughout the day you feel as though you haven’t slept for days and you get angry with yourself about how little you feel you can accomplish. As the day winds down you start anticipating your next dose and realize that tomorrow is going to be worse than today because the effects are cumulative. The closer you get to the end the more the drugs have built up in your body and the worse you feel. So in effect the closer you get to the end of the 5 days the harder it gets push through.
The entire week of treatment you're terrified about ending up some place where you might vomit and not have access to a bathroom. The treatment also throws your digestive tract into a tailspin. The naturally occurring bacteria which helps with proper digestion is killed by the chemo drugs. This persists into the next week without drugs.
I feel better each day that puts me further from my last treatment. The catch 22 of the situation is that the better you start to feel the more the clock is ticking in your head. The better you feel the closer you are to the next round of treatment. You will never get back to the 100% that you once knew and always took for granted.
This description is not to conjure up pity or praise from people, but rather to make sure everyone understands why it is important to support research to find better solutions. I hope that I’m around to see the day when solutions like surgery and chemotherapy and radiation are thought of as archaic routes to take in the treatment of cancer.
As I said I would not wish this on anyone but unfortunately all of you will know or already know another person that has to go through something similar or something worse. In some cases some of you will have to go through something like this. Right at this moment we all have the opportunity to try to get ahead of this. The amount of the donations is not what’s important to me. As I said previously, I would prefer a million small donations to a few large ones. In order to donate you can send cash or checks to me at 506 S Curley street, Baltimore Md,.21224. It is probably easiest for people to make donations on: http://www.active.com/donate/qquest/johnpetrovick
Saturday, August 6, 2011
Cancer can take so much from anyone but it can only take Hope if you let it!
I attended a the 4th annual survivor's luncheon for Dr. Quinones today. It made me realize how fortunate I have been so far. You may read that and think that I have finally lost it. How does a guy who has had two brain tumors in three years say he is fortunate? I looked around the luncheon and realized that some faces from previous years weren't there this year, and its not because they were on vacation. Some individuals can barely work or have trouble speaking or seeing. Some people were wheel chair bound. One woman there had gone through some 30 different surgeries. I have graduated from law school and will run in my 3rd consecutive Baltimore running festival.
All of us at the luncheon have the pleasure of having the best surgeon in the world. But what I have is the best family and friends that anyone could ask for. Which is why I am not afraid to issue a challenge which I will explain later on.
While I have been fortunate, I will never be able to fully explain the sacrifices I have had to make in order to deal with these tumors. Among other things, I have had to give up graduating on time from law school, having the freedom to go where I want when I want, I have lost or failed to be able to earn an unimaginable amount of money through missed time or lost work opportunities, and finally I may end up losing my life. This is just the beginning of the list and I'm positive I'll have to give up more, but what I refuse to give up is hope. My hope is that we find a cure for this. Maybe it is a fool's hope but I wholeheartedly believe that there will be a cure for cancer in my lifetime; I have to. My hope is based on the research and the advancements I have seen happen in cancer treatment and the research I have witnessed in Dr. Q's lab. I watch these brilliant minds give up a plethora of opportunities to spend endless hours doing research in this lab.
Basically, I am asking that from now until race day you give something up or take a moment to put a small amount aside each day, or each week and then take that and donate it to the lab. So, the challenge that I am putting to anyone who is reading this is to give something up which you do daily or weekly. This could be getting coffee at Starbucks instead of making it, or packing a lunch instead of eating out, or taking a night off from going out. I honestly do not care how much the final amount ends up being. My surgeon says that he would rather get a million $1 donations then get a few large donations and I completely agree. I realize these are tough times for anyone and I don't want anyone putting themselves in financial trouble but setting a small amount aside each day, even if it is just the change from your pockets adds up. It could be the $5 you donate that puts the lab over the top to purchase equipment, or samples, or pay a lab assistant for their time. If this seems like a lot just think of the sacrifices I have had to make in my life at 27 yrs. old and weigh it against giving up $.50 a day or whatever you may decide to do.
I appreciate you sticking with me and all I can offer back is my friendship and my comitment to never quit trying to beat this
All of us at the luncheon have the pleasure of having the best surgeon in the world. But what I have is the best family and friends that anyone could ask for. Which is why I am not afraid to issue a challenge which I will explain later on.
While I have been fortunate, I will never be able to fully explain the sacrifices I have had to make in order to deal with these tumors. Among other things, I have had to give up graduating on time from law school, having the freedom to go where I want when I want, I have lost or failed to be able to earn an unimaginable amount of money through missed time or lost work opportunities, and finally I may end up losing my life. This is just the beginning of the list and I'm positive I'll have to give up more, but what I refuse to give up is hope. My hope is that we find a cure for this. Maybe it is a fool's hope but I wholeheartedly believe that there will be a cure for cancer in my lifetime; I have to. My hope is based on the research and the advancements I have seen happen in cancer treatment and the research I have witnessed in Dr. Q's lab. I watch these brilliant minds give up a plethora of opportunities to spend endless hours doing research in this lab.
Basically, I am asking that from now until race day you give something up or take a moment to put a small amount aside each day, or each week and then take that and donate it to the lab. So, the challenge that I am putting to anyone who is reading this is to give something up which you do daily or weekly. This could be getting coffee at Starbucks instead of making it, or packing a lunch instead of eating out, or taking a night off from going out. I honestly do not care how much the final amount ends up being. My surgeon says that he would rather get a million $1 donations then get a few large donations and I completely agree. I realize these are tough times for anyone and I don't want anyone putting themselves in financial trouble but setting a small amount aside each day, even if it is just the change from your pockets adds up. It could be the $5 you donate that puts the lab over the top to purchase equipment, or samples, or pay a lab assistant for their time. If this seems like a lot just think of the sacrifices I have had to make in my life at 27 yrs. old and weigh it against giving up $.50 a day or whatever you may decide to do.
I appreciate you sticking with me and all I can offer back is my friendship and my comitment to never quit trying to beat this
Monday, July 25, 2011
Chemo session 1
I am about to take the 4th dose out of 5 for this session. I would be lying if I said this was easy. It sucks! Best way to describe it is like being car sick or motion sick; not like you're going to get sick right away but you just feel off.
My chemotherapy is not taken by iv, instead I am prescribed pills for five days and take them before I go to bed. The idea is that I sleep through the worst side effects. The problem is it makes for an awful morning and it gets worse as the 5 days go on. I do this once a month for the next 12 months. So I am feling pretty crummy right now.
I am going back to work on august 1. It will feel good to have a purpose again.
Been feeling a little lost and aimless lately.
A lot of people have been asking me to do things in the fall or winter. Unfortunately, my chemotherapy schedule and my financial situation will not allow me to commit to a whole lot.
The best thing anyone can do for me during chemotherapy weeks is to help me out with dinner. I have to allow for 2 hours between dinner and my chemotherapy dose. The food tidings website seems to be gone. But just call, text or email.
Training tip of the week: sign up for whatever race you want to enter fee will go up and spots will fill up soon!
My chemotherapy is not taken by iv, instead I am prescribed pills for five days and take them before I go to bed. The idea is that I sleep through the worst side effects. The problem is it makes for an awful morning and it gets worse as the 5 days go on. I do this once a month for the next 12 months. So I am feling pretty crummy right now.
I am going back to work on august 1. It will feel good to have a purpose again.
Been feeling a little lost and aimless lately.
A lot of people have been asking me to do things in the fall or winter. Unfortunately, my chemotherapy schedule and my financial situation will not allow me to commit to a whole lot.
The best thing anyone can do for me during chemotherapy weeks is to help me out with dinner. I have to allow for 2 hours between dinner and my chemotherapy dose. The food tidings website seems to be gone. But just call, text or email.
Training tip of the week: sign up for whatever race you want to enter fee will go up and spots will fill up soon!
Wednesday, July 20, 2011
Training time
It was brought to my attention that we have under 90 days now until the half marathon on October 15. There are also other options in the baltimore running festival for those of you who are concerned about doing the half. The relay is an option that i know is a great way to put together a team while limiting the distance for each person.
The ideal training time to start from 0 is about 90 days. So we're already a little behind if you haven't started training yet, then time is now! We still have plenty of time to get everyone to the goal. The important thing to remember when starting is that distance is always more important than pace. As you go along picking up the pace will come because you'll be in better shape and much better equipped to add some speed. Remember the goal in all of this is to finish the distance; I hate to say it none of us are gonna win this thing.
There are 2 kinds of runs during training.
Maintenance runs= runs you do either 3 or 4 times a week (Mon.-Fri.)
Stretch Runs= runs you do once a week to push the distance you are doing. It is preferable to do these on Saturdays so you can allow proper time to hydrate the night before, eat/hydrate the morning of, and then relax/ice afterwards.
Here is the training Schedule that I recommend. Once again I am not a trainer so adjust this as needed.
July 18-22 maintenance run- 1 mile; July 23- 2 miles
July 25-29 maintenance run- 1mile; July 30- 3 miles
Aug. 1- 5 maintenance run- 2 miles; Aug. 6- 4 miles
Aug. 8-12 maintenance run- 2 miles; Aug. 13 - 5 miles
Aug. 14-18 maintenance run- 3 miles; Aug. 20 - 6 miles
Aug. 22-26 maintenance run- 3 miles; Aug. 27- 4 miles
Aug. 29- sept 2 maintenance run- 3 miles; Sept 3- 7 miles
Sept. 5- Sept. 9 Maintenance run- 4 miles; Sept.10- 8 miles
Sept. 12- Sept. 16 Maintenance run- 4 miles; Sept. 17- 9 miles
Sept. 19- Sept. 23 Maintenance run- 4 miles; Sept. 24- 5 miles
Sept. 25- Sept. 29 Maintenance run- 4 or 5 miles; Sept. 30- 10 miles
I recommend at least one week of scaling everything down before the race in order to let your body be 100% on race day but some people may need 2 weeks. You're maintenance runs should be 3 miles, no more than 3 times a week.
Don't worry about the fact that the schedule does not go all the way up to the full 13.1 miles. If you stick to the schedule and are capable of doing the 10 miles before hand you will have enough to get 13 on race day I'm sure of it. It is very rare for anyone to train all the way up to the full distance for any long race.
Here are a couple of tips to start off.
DO NOT skimp on shoes; it is always tempting to go to a discount store and try to get cheap running shows or to get the wrong size because they're on sale. Don't do this, you'll pay for it at some point during training; There are some good running stores that will get you fitted and tell you which type of running shoes are ideal for you (they will always tell you the most expensive ones are the best). You don't need to opt for the most expensive model but don't go for the cheapest either.
Stretch, Ice, hydrate and eat:
This sounds like the most basic advice in the world but taking 10-15 minutes before and after to stretch will allow your joints and muscles to feel much better during runs which ultimately allows for better form. If something hurts after a run, then put ice on it for 20 minutes. It makes a huge difference. After my long runs I actually take ice baths; if you can handle them they make a huge difference.
Allow 20-30 minutes before a run to hydrate/eat something; it really will help you to make it through runs.
I'll post at least one training tip a week with my usual post.
Anyone who has any questions should feel free to ask me. Good luck
The ideal training time to start from 0 is about 90 days. So we're already a little behind if you haven't started training yet, then time is now! We still have plenty of time to get everyone to the goal. The important thing to remember when starting is that distance is always more important than pace. As you go along picking up the pace will come because you'll be in better shape and much better equipped to add some speed. Remember the goal in all of this is to finish the distance; I hate to say it none of us are gonna win this thing.
There are 2 kinds of runs during training.
Maintenance runs= runs you do either 3 or 4 times a week (Mon.-Fri.)
Stretch Runs= runs you do once a week to push the distance you are doing. It is preferable to do these on Saturdays so you can allow proper time to hydrate the night before, eat/hydrate the morning of, and then relax/ice afterwards.
Here is the training Schedule that I recommend. Once again I am not a trainer so adjust this as needed.
July 18-22 maintenance run- 1 mile; July 23- 2 miles
July 25-29 maintenance run- 1mile; July 30- 3 miles
Aug. 1- 5 maintenance run- 2 miles; Aug. 6- 4 miles
Aug. 8-12 maintenance run- 2 miles; Aug. 13 - 5 miles
Aug. 14-18 maintenance run- 3 miles; Aug. 20 - 6 miles
Aug. 22-26 maintenance run- 3 miles; Aug. 27- 4 miles
Aug. 29- sept 2 maintenance run- 3 miles; Sept 3- 7 miles
Sept. 5- Sept. 9 Maintenance run- 4 miles; Sept.10- 8 miles
Sept. 12- Sept. 16 Maintenance run- 4 miles; Sept. 17- 9 miles
Sept. 19- Sept. 23 Maintenance run- 4 miles; Sept. 24- 5 miles
Sept. 25- Sept. 29 Maintenance run- 4 or 5 miles; Sept. 30- 10 miles
I recommend at least one week of scaling everything down before the race in order to let your body be 100% on race day but some people may need 2 weeks. You're maintenance runs should be 3 miles, no more than 3 times a week.
Don't worry about the fact that the schedule does not go all the way up to the full 13.1 miles. If you stick to the schedule and are capable of doing the 10 miles before hand you will have enough to get 13 on race day I'm sure of it. It is very rare for anyone to train all the way up to the full distance for any long race.
Here are a couple of tips to start off.
DO NOT skimp on shoes; it is always tempting to go to a discount store and try to get cheap running shows or to get the wrong size because they're on sale. Don't do this, you'll pay for it at some point during training; There are some good running stores that will get you fitted and tell you which type of running shoes are ideal for you (they will always tell you the most expensive ones are the best). You don't need to opt for the most expensive model but don't go for the cheapest either.
Stretch, Ice, hydrate and eat:
This sounds like the most basic advice in the world but taking 10-15 minutes before and after to stretch will allow your joints and muscles to feel much better during runs which ultimately allows for better form. If something hurts after a run, then put ice on it for 20 minutes. It makes a huge difference. After my long runs I actually take ice baths; if you can handle them they make a huge difference.
Allow 20-30 minutes before a run to hydrate/eat something; it really will help you to make it through runs.
I'll post at least one training tip a week with my usual post.
Anyone who has any questions should feel free to ask me. Good luck
Monday, July 18, 2011
This only takes a minute
Hey Everyone--
I really want to thank you guys for doing everything you have done for me so far. I want to say again, You really are the best collection of friends that I could ask for.
I hate to keep asking you guys to do stuff, but I'm going to, particularly when it comes to supporting research causes. My doctor has been up front with me in saying that I'm the underdog in this fight. I am confident that my treatment will work, but it is not a cure. My Doctor and I have discussed this in terms of it being a chronic condition. I really hope I won't have to, but the reality is that even if my chemotherapy is successful, I may have to deal with a brain tumor again in my life. The reason I tell you this is because I want to stress how important the research aspect of everything is to me at this point. I fully believe that it is possible to find a cure to cancer within our lifetime. Below is an email from the Livestrong foundation and essentially it is asking for support in signing a letter to the UN.
Did you know that six out of 10 deaths globally come from diseases you can't catch like cancer? And that we can prevent millions of these deaths with tools we already have?
This September, world leaders are meeting for a historic UN Summit on cancer and other non-communicable diseases. I just signed onto LIVESTRONG's open letter calling on world leaders to make the world's top killers a top priority.
Will you add your name as well?
http://www.LIVESTRONG.org/SignOn
If we can get 100,000 signatures before the summit, LIVESTRONG will hand-deliver the letter to the UN Secretary General and key Heads of State.
Thanks.
I really want to thank you guys for doing everything you have done for me so far. I want to say again, You really are the best collection of friends that I could ask for.
I hate to keep asking you guys to do stuff, but I'm going to, particularly when it comes to supporting research causes. My doctor has been up front with me in saying that I'm the underdog in this fight. I am confident that my treatment will work, but it is not a cure. My Doctor and I have discussed this in terms of it being a chronic condition. I really hope I won't have to, but the reality is that even if my chemotherapy is successful, I may have to deal with a brain tumor again in my life. The reason I tell you this is because I want to stress how important the research aspect of everything is to me at this point. I fully believe that it is possible to find a cure to cancer within our lifetime. Below is an email from the Livestrong foundation and essentially it is asking for support in signing a letter to the UN.
Did you know that six out of 10 deaths globally come from diseases you can't catch like cancer? And that we can prevent millions of these deaths with tools we already have?
This September, world leaders are meeting for a historic UN Summit on cancer and other non-communicable diseases. I just signed onto LIVESTRONG's open letter calling on world leaders to make the world's top killers a top priority.
Will you add your name as well?
http://www.LIVESTRONG.org/SignOn
If we can get 100,000 signatures before the summit, LIVESTRONG will hand-deliver the letter to the UN Secretary General and key Heads of State.
Thanks.
Sunday, July 17, 2011
Getting Started
I have been back at my house in Baltimore for the last week and everything has been going really well. I have been able to resume with a light workout schedule, which has really helped with how I am feeling. It is still pretty far off, but I have made the decision that I will be running the Baltimore half marathon this year. My surgeon Dr. Q is running, and together we will be fundraising. Anyone who wants to run with us let me know and I will give you some details about the team we're putting together. I'm also willing to help anyone with a training regiment. While I am not a professional trainer I do know from personal experience what it is like to try to start from scratch and get ready for a race. I prepped for my first marathon after not being able to run at all for about 4 months. I am also about 20 lbs. heavier than I normally am and so my training has started off very light as well. I am going to be doing at least 3 chemo sessions between now and the race so there should be opportunities for people to keep up with my training regiment. Let me be clear I want people to run with me and Dr. Q but I don't want anyone to do anything they know they shouldn't or which will be detrimental to their well being. 13 miles is a lot, and I'm confident i can help get just about anyone get there, but I don't want anyone to do so in spite of their own health.
I am going to return to work this week and I will start my first round of chemotherapy on Friday this week. This is the tough part. The weeks where I am doing Chemo are very hard on me. I am tired, and just do not feel like myself. This is when I need reminders about why it is worth keeping such a positive attitude and how many great friends I have. I need everyone to remember that this is likely to go on for about a year and I'll need help the whole way. Right now I am still on high about how well everything is going. Everyone wants to help right away, but when I really need everyone is when I get 6, 8, and 12 months into this.
At this point I am feeling really great, unfortunately I go from feeling great to exhausted on a minute to minute basis so I am subject to changing my mind about what activities I am up for fairly quickly. So I want to apologize for times when I "flake out" on doing stuff with people.
A lot of people from out of town have asked about ordering dinners for me since they cannot be here to do so in person. I will put some places and some new dates on the food tidings website, so please check there.
I am going to return to work this week and I will start my first round of chemotherapy on Friday this week. This is the tough part. The weeks where I am doing Chemo are very hard on me. I am tired, and just do not feel like myself. This is when I need reminders about why it is worth keeping such a positive attitude and how many great friends I have. I need everyone to remember that this is likely to go on for about a year and I'll need help the whole way. Right now I am still on high about how well everything is going. Everyone wants to help right away, but when I really need everyone is when I get 6, 8, and 12 months into this.
At this point I am feeling really great, unfortunately I go from feeling great to exhausted on a minute to minute basis so I am subject to changing my mind about what activities I am up for fairly quickly. So I want to apologize for times when I "flake out" on doing stuff with people.
A lot of people from out of town have asked about ordering dinners for me since they cannot be here to do so in person. I will put some places and some new dates on the food tidings website, so please check there.
Monday, July 11, 2011
Getting Back to normal
I have been back up in Baltimore the last 2 nights. Feels really good to be getting back to normal. I have another Doctor's appointment tomorrow morning where they will remove my stitches and perhaps set a schedule for my chemo schedule. I am hoping to get back to work some time this week. A lot of people have asked what I need people to do to help me. A lot of people have provided dinners so far and it has been a tremendous help. I want to thank all of you that have already done so.
I am going to set up the food tidings website again. Please feel free to sign up. If you do sign up I really enjoy eating with whoever brings the meals so try to allow for an evening where you may have some time to hang out though it is not a requirement. I enjoy everything except bananas so feel free to be creative. I appreciate everything that people have done for me to this point. I am still open to visits at just about any point. So feel free to stop by, just let me know before hand so I can make sure to be home. If you haven't been to my house before I am at 506 S Curley street, Baltimore Md.
The schedule will have more days added, particularly once i figure out the chemo schedule because those weeks will be especially exhausting.
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=287f6bd2-1c2c-4095-9421-df29cd569729
I am going to set up the food tidings website again. Please feel free to sign up. If you do sign up I really enjoy eating with whoever brings the meals so try to allow for an evening where you may have some time to hang out though it is not a requirement. I enjoy everything except bananas so feel free to be creative. I appreciate everything that people have done for me to this point. I am still open to visits at just about any point. So feel free to stop by, just let me know before hand so I can make sure to be home. If you haven't been to my house before I am at 506 S Curley street, Baltimore Md.
The schedule will have more days added, particularly once i figure out the chemo schedule because those weeks will be especially exhausting.
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=287f6bd2-1c2c-4095-9421-df29cd569729
Thursday, July 7, 2011
Test Results
I just got back from a Doctor's appointment. The doctor had my oncology reports which was unexpected. The results were not good. Last time I was diagnosed with a stage 3 Anaplastic Astrocytoma which is serious and fairly aggressive tumor. This time I am facing a stage 4 Glioblastoma which is a more aggressive and faster growing tumor. This is as high a grade of brain tumor as there is. I will be forced to undergo a regiment of chemotherapy again. I will be taking a drug called Temodar. This is the same form of chemo I took last time. Most likely I will take it for 5 days in a row each month for approximately a year. The good news is that there is no sign of the tumor remaining but this also means that there is not really a way to tell how effective the chemo is on the cancer cells. It is not likely I will be doing radiation this time, which is a good thing because that was the part of treatment which was devastating last time.
I'd just be lying if I said I was fine with all of this. I did this once though and I'll do it again, this time I have the advantage of having a better idea of what is ahead of me. This part of the process is the real grind and this is where I'll need all of you to help me more than ever. I am reluctant to take help so please be insistent. Not sure I am really up for talking about it because it is a little hard right now. The good news is that surgery was incredibly successful, there is no sign of the tumor remaining right now, but this is the problem with a glioblastoma; it is something which cannot be predicted about when it may recur. I am not exactly sure when we're going to get started on chemo but it should be in the next two weeks. I plan on trying to get on with my life as normally as possible during this process; last time I completed a semester of law school and trained for a marathon while going through this process. So I intend on doing somethings and beating this again.
I'd just be lying if I said I was fine with all of this. I did this once though and I'll do it again, this time I have the advantage of having a better idea of what is ahead of me. This part of the process is the real grind and this is where I'll need all of you to help me more than ever. I am reluctant to take help so please be insistent. Not sure I am really up for talking about it because it is a little hard right now. The good news is that surgery was incredibly successful, there is no sign of the tumor remaining right now, but this is the problem with a glioblastoma; it is something which cannot be predicted about when it may recur. I am not exactly sure when we're going to get started on chemo but it should be in the next two weeks. I plan on trying to get on with my life as normally as possible during this process; last time I completed a semester of law school and trained for a marathon while going through this process. So I intend on doing somethings and beating this again.
Monday, July 4, 2011
Updates will be more regular from now on
Happy fourth of July Everyone! I am going to try to update the blog every week on Sunday from now on so that it is a little easier to keep up with.
I am back from the beach and hanging out at my parents house again completely open to visitors and invites to just about any event. It feels great to get out of the house every now and again although I get tired more quickly than I'd like to admit. Getting places is a bit of an issue right now because I am not sure when I will be allowed to drive.
For those of you who are unaware some of my friends got together and collected money and purchased me an ipad. I was blown away by this! Not only the gift itself but short period of time they accomplished it in. They also had enough left over that they donated approximately $500 to Dr. Q's research group. I am mentioning all of this because they deserve a lot of recognition. This gesture absolutely had a real effect on why I was able to recover so quickly.
This goes for everyone that has called, or stopped by, or dropped something off; You have given me so much to want to fight for. It means so much, I feel as though I owe all of you something which I never will really be able to repay. The best I can do is to never let any of this get the best of me, and I promise you any part of this I have a say in will be fought with unbelievable determination.
Thanks for everything to this point you have been an inspiration on what it means to be there for a friend.
I am back from the beach and hanging out at my parents house again completely open to visitors and invites to just about any event. It feels great to get out of the house every now and again although I get tired more quickly than I'd like to admit. Getting places is a bit of an issue right now because I am not sure when I will be allowed to drive.
For those of you who are unaware some of my friends got together and collected money and purchased me an ipad. I was blown away by this! Not only the gift itself but short period of time they accomplished it in. They also had enough left over that they donated approximately $500 to Dr. Q's research group. I am mentioning all of this because they deserve a lot of recognition. This gesture absolutely had a real effect on why I was able to recover so quickly.
This goes for everyone that has called, or stopped by, or dropped something off; You have given me so much to want to fight for. It means so much, I feel as though I owe all of you something which I never will really be able to repay. The best I can do is to never let any of this get the best of me, and I promise you any part of this I have a say in will be fought with unbelievable determination.
Thanks for everything to this point you have been an inspiration on what it means to be there for a friend.
Tuesday, June 28, 2011
Pardon my confusing texts
I have gone from a very regimented schedule to doing virtually nothing all day. a side effect of all of this is that I have completely lost track of dates and days of the week so I probably have sent some confusing textxs regarding visiting dates and times to people. Bear with me. I am lucid. that being said I am leaving for the beach tomorrow morning and coming back friday morning so obviously the only people here to visit will be my mother and sandy. While they appreciate company, visiting for the next few days may not be as exciting. Thanks for everything everyone, feeling better every day.
Sunday, June 26, 2011
Don't feed the bear!
I appreciate the visitors and the company at my parents so this next request will seem very odd. But from this point forward I am asking that anyone who comes to visit me avoid bringing snacks. the dinner schedule is very much appreciated. Unfortunately, I am on some meds which make me hungry non stop and I cannot have cookies, brownies, cakes, candy, and all sorts of other desserts readily available to me. You'll be helping me greatly by not bringing such items despite the fact that it seems nurturing. Once again I am happy to visitors at any time i just want to make sure my arteries make in through the next few weeks
Friday, June 24, 2011
Just hanging out
I am resting at my parents house now and visitors are welcome. The most exhausting part is actually scheduling visitors. Shoot me a text if you wanna swing by not really an issue. I am not much entertainment but i'll be here. Thanks again everyone. the love and support i have received is a huge reason why i am doing so well
Thursday, June 23, 2011
heading home
Hey everyone sorry I have not updated this in a while. the internet connection at the hospital is spotty at best. I am headed home in a couple of hours. I'll be open to visitors but keep in mind that I need to get a lot of rest. This process has gone even smoother than last time, but i still have a long way to go. The best news in all of this is that my surgeon told me that for this operation he was able to dehydrate my brain so much that it was small enough that they were able to remove the tumor without taking any more blood vessels or brain tissue. This should make for an excellent recovery without a lot of side effects. Really exhausted now but I'll see all of you soon.
Tuesday, June 21, 2011
Out of Surgery
John just came out of surgery. As they wheeled him past us he gave us a wave and said "love you guys". Fantastic news! There is a long way to go, but we've cleared the first hurdle. We'll keep everyone posted as we get more news. Keep the prayers coming.
Monday, June 20, 2011
big day
First off some house keeping issues: I realize that many of you are concerned about me and want updates about what is going on instantly, but this is a slow process at times. The blog will be updated regularly by my sister and my family so please check back regularly. My sister will be available for calls and texts but please be understanding that she does not need to be overwhelmed during such a stressful process and will do her best to update everyone.
For those of you who know me even for a little while it becomes fairly evident that the best way to try to get me to do something is to tell me that I can't do it and I'll go to extreme lengths to make sure I can. Obviously the challenge which I am again faced with is of a different nature. This is a somewhat familiar challenge but nonetheless daunting. To try to say this is fair or part of a plan is honestly not something I can willingly subscribe to. To try to figure out "why me" or "what did I do" is even less productive. All I can say at this point is that I can take it. I know this because all of you have constantly reminded me how strong I am.
I wish I had enough time to talk with everyone that I have heard from this past week. The honest to god truth is that I did not have time to talk with each one of you because i have had so many people call, e-mail, text, and visit. This is for everyone. At times it could be said that I have a bad habit of not throwing things away in my life; old clothes, documents, or knickknacks of various kinds. This week and the support I have received has made me realize that I seem to have a habit of doing the same with people. This is one habit I have no regrets about. I have so many people that care about me in my life that I am literally amazed.
I can't say I have always known what I wanted to do with my life or why I'm doing things. I will say that as I have gone along throughout my life my one consistent goal has been to make impression of some kind on those that I have encountered. This week has given me a wonderful sense of fulfillment because I have realized that if nothing else to this point in life that goal is intact.
For those of you who know me even for a little while it becomes fairly evident that the best way to try to get me to do something is to tell me that I can't do it and I'll go to extreme lengths to make sure I can. Obviously the challenge which I am again faced with is of a different nature. This is a somewhat familiar challenge but nonetheless daunting. To try to say this is fair or part of a plan is honestly not something I can willingly subscribe to. To try to figure out "why me" or "what did I do" is even less productive. All I can say at this point is that I can take it. I know this because all of you have constantly reminded me how strong I am.
I wish I had enough time to talk with everyone that I have heard from this past week. The honest to god truth is that I did not have time to talk with each one of you because i have had so many people call, e-mail, text, and visit. This is for everyone. At times it could be said that I have a bad habit of not throwing things away in my life; old clothes, documents, or knickknacks of various kinds. This week and the support I have received has made me realize that I seem to have a habit of doing the same with people. This is one habit I have no regrets about. I have so many people that care about me in my life that I am literally amazed.
I can't say I have always known what I wanted to do with my life or why I'm doing things. I will say that as I have gone along throughout my life my one consistent goal has been to make impression of some kind on those that I have encountered. This week has given me a wonderful sense of fulfillment because I have realized that if nothing else to this point in life that goal is intact.
Thursday, June 16, 2011
Food schedule
We've set up an online schedule for food thanks to the many offers. Here's the link:
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=90d4011d-d2c1-4d11-8a29-a4af7db9f532
Thanks.
http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=90d4011d-d2c1-4d11-8a29-a4af7db9f532
Thanks.
Wednesday, June 15, 2011
Got sent home
I was sent home yesterday afternoon. I am not allowed to drive right now because all the evidence points to the fact that I had a seizure while running and therefore, even while on anti seizure medication I'm not cleared to drive. Surgery is scheduled for Tuesday morning. Probably going to stay at my house in Baltimore on Saturday night. Visitors are welcome whenever and are always appreciated.
I don't have a whole lot of information about what's going on and I'd be lying if I said I wasn't scared. But what I will say is that I am convinced I will come through this fine and for anyone who has ever had an argument or a conversation with me you know that once I am convinced of something I won't be talked out of it. I don't plan on starting now!
Tuesday, June 14, 2011
Hopefully Headed home
Hey everyone I'm headed home at some point today it seems. Thanks for all the texts and other messages. They are really helping me stay positive and keep my chin up. Obviously this is very important because it is the only thing I can control. My surgery is scheduled for Tuesday June, 21. I am headed back to my parents house in Arnold. Visitors are welcome as mentioned please text me or my sister before coming.
Monday, June 13, 2011
Same story just a different date
So once again, I was running, I had a seizure, I was taken to a hospital, I had an MRI and they discovered a tumor. It is a smaller tumor in a similar spot. The difference is this one may be a little more intertwined with blood vessels and the part of my brain involved with motor function but the treatment plan seems to be the same. Surgery is scheduled tentatively for Monday June 21st. I think I will be headed home today probably to my parents. Visitors are all welcome just let me know in advance so I know to be home. Text either me or my sister her #401-359-7727. If you don't hear back from me I may be asleep. The only thing is sick people should probably wait til after surgery to come because I don't want to catch anything that may delay surgery and my sister's new baby is there as well. Not up for talking yet but texts and e-mails are most welcome. Thanks for all the love see you soon.
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