I was reflecting recently about a phrase that I feel like I know well. It's called the "point of recognition," and it is the absolute moment when you know nothing will ever be the same again. Many times it is for better, and sometimes worse, but never the same. These moments happen all the time and we've all had them. When you propose to your girlfriend you know that things will be forever changed, when you have a baby you undoubtedly know this feeling. It is a very powerful feeling to experience and one should try to step back and reflect on it, and maybe write about it in a journal or diary, or blog. These are the moments that shape and define our lives - they'll never be forgotten.
The day the neurosurgeon walked into the room and immediately said that, "this is pretty darn serious," was the point of recognition for me. Everything immediately before or after that piggy backs on that one particular moment. The seizure that kick started this was a fleeting moment of uncertainty but wasn't a moment when everything in my life and myself changed.
It is human nature to adapt and form a new reality that we move along with. None of us would be here if it weren't for our unbelievable abilities to adapt. It has been 1/3 of a year since I had the seizure that started this whole thing and while everything is still pretty new I'm learning how to deal with this new reality around me. I am dependent upon anti-seizure medicine, I am not allowed to drive, and I definitely have the occasional thought of impending doom, and fear but these are all good things if you look at them properly.
While there are many seemingly negative new factors of my new reality there are twice as many new pieces that I am proud of. I've never been a very empathetic person, but I've changed in that regard at least three fold if one can measure such things. I've commented to several people that I feel part of a community. Those living with cancer and survivors who wonder if it will ever come back. I am connected in the most unbelievable way to people I hardly even know. I have rekindled friendships with childhood friends. I learn something new everyday about my body, and everytime I go to the 12th floor of the hospital I see people who are enduring and fighting. I look around and know why each and every person on that floor is there. Little people and big people, old and young, people with hair and without hair, but all trying to see one more day - all fighting and coping.
My new life is about to change again as I take chemo tomorrow for the first time. Thanks for all of the cards and well wishes. I certainly don't want to take these little pills that pack so much weight, but sometimes you have to do things you don't really want to do in order to accomplish what you really want.
The battle began at the point of recognition and maybe even before. I had to decide right then and there what the outcome was going to be. There are many miles still to go, but I will get there in one form or another. I simply try to remember to be positive. You'll get back what you put into life.
Sunday, May 3, 2009
Thursday, April 9, 2009
Montana Section Recognized
JKA,
The Golden J subcommittee would like to inform you that it has recognized Jesse, Sarah, and Ripley Berwald as the new Montana Section Representatives. However, the Berwalds have broken a major JKA rule and voted for Michigan State the other night thus forcing the subcommittee to reduce their voting power to 1/2 a vote. What was the score Jesse? Geah.
The Golden J subcommittee would like to inform you that it has recognized Jesse, Sarah, and Ripley Berwald as the new Montana Section Representatives. However, the Berwalds have broken a major JKA rule and voted for Michigan State the other night thus forcing the subcommittee to reduce their voting power to 1/2 a vote. What was the score Jesse? Geah.
Sunday, April 5, 2009
Latest news April 2009
Hey all,
Thanks again for all of the support - it has really been tremendous and has kept my spirits high. I wanted to write a quick update as I've not actually written on the blog where we're at with everything.
So...the diagnosis all along is that we think the tumor is a lower grade (with some higher grade components) but it is really big and I've probably been living with it for quite a while. Like 5-10 years. Its weird to think that I've had cancer for such a long time - kind of changes the perspective a little for me and is interesting to think about. When I was first diagnosed with brain cancer I was acting a little like I was going to go any minute. Thinking about my mortality frequently and even making sure Becky knew where to find passwords to pay certain bills and stuff. We're taught to think of brain cancer as a 2-6 month type of situation and many are. Many primary brain tumors are typically very aggressive. Mine has some aggressive components to it but I've been living with it for a long time. Of all the brain tumors I think this one is the best to have.
*BTW - anything I have ever done to any of you which was unkind, ungrateful, or anything else was because of the tumor. I apologize on its behalf.
Anyway, the treatment plan has been really complicated to come up with because the standard way to treat this normally would be to do radiation therapy (RT) and chemo therapy to begin. But, the fact that the tumor is so large (the entire right frontal lobe, and stretching across the the midline into the left a little) means that we'd have to radiate a boat load of my brain. This has really made me uneasy from the beginning but how does one choose between survival and side effects?! Difficult.
My radiation oncologist was nervous about this all along and made it very clear at the beginning that he was going to get as many people involved in the case as possible. Because the standard of care is to radiate it eventually won out and we prepared the radiation mask and everything and were ready to go.
BUT...in breaking news, I received word of an opening in the neurooncologist's schedule at UniversityHospital on Friday. We talked in depth about my situation and I think everyone in the room came away feeling like the downside to beginning with just chemo is minimal. We'll get to see how the tumor responds to treatment and hopefully shrink it to the point where if we do have to radiate we'll have much less surface area to deal with. It is unlikely that we'll lose critical time by not radiating to begin. Nothing is for sure and part of this is science and part of this is "feel" so lets all pray that this thing responds well to chemo.
It is interesting because I feel much better about this. I think I have a resonably good gut feel for things and this just "feels" better. We'll see.
The chemo I'll be starting is called Temozolomide and is taken in pill form so I'll be able to do chemo at home which I quite like.
I will likely start next week. I'll do 5 days on and bout 25 days off for about 6 months. We'll be taking MRIs frequently to stay on top of it.
Thanks for reading and for your support. Go Heels tomorrow night in the National Championship!!
Thanks again for all of the support - it has really been tremendous and has kept my spirits high. I wanted to write a quick update as I've not actually written on the blog where we're at with everything.
So...the diagnosis all along is that we think the tumor is a lower grade (with some higher grade components) but it is really big and I've probably been living with it for quite a while. Like 5-10 years. Its weird to think that I've had cancer for such a long time - kind of changes the perspective a little for me and is interesting to think about. When I was first diagnosed with brain cancer I was acting a little like I was going to go any minute. Thinking about my mortality frequently and even making sure Becky knew where to find passwords to pay certain bills and stuff. We're taught to think of brain cancer as a 2-6 month type of situation and many are. Many primary brain tumors are typically very aggressive. Mine has some aggressive components to it but I've been living with it for a long time. Of all the brain tumors I think this one is the best to have.
*BTW - anything I have ever done to any of you which was unkind, ungrateful, or anything else was because of the tumor. I apologize on its behalf.
Anyway, the treatment plan has been really complicated to come up with because the standard way to treat this normally would be to do radiation therapy (RT) and chemo therapy to begin. But, the fact that the tumor is so large (the entire right frontal lobe, and stretching across the the midline into the left a little) means that we'd have to radiate a boat load of my brain. This has really made me uneasy from the beginning but how does one choose between survival and side effects?! Difficult.
My radiation oncologist was nervous about this all along and made it very clear at the beginning that he was going to get as many people involved in the case as possible. Because the standard of care is to radiate it eventually won out and we prepared the radiation mask and everything and were ready to go.
BUT...in breaking news, I received word of an opening in the neurooncologist's schedule at UniversityHospital on Friday. We talked in depth about my situation and I think everyone in the room came away feeling like the downside to beginning with just chemo is minimal. We'll get to see how the tumor responds to treatment and hopefully shrink it to the point where if we do have to radiate we'll have much less surface area to deal with. It is unlikely that we'll lose critical time by not radiating to begin. Nothing is for sure and part of this is science and part of this is "feel" so lets all pray that this thing responds well to chemo.
It is interesting because I feel much better about this. I think I have a resonably good gut feel for things and this just "feels" better. We'll see.
The chemo I'll be starting is called Temozolomide and is taken in pill form so I'll be able to do chemo at home which I quite like.
I will likely start next week. I'll do 5 days on and bout 25 days off for about 6 months. We'll be taking MRIs frequently to stay on top of it.
Thanks for reading and for your support. Go Heels tomorrow night in the National Championship!!
Saturday, March 28, 2009
Diagnosis - The Short Version
I've told this story many times now so I'll be brief:
Begin: 1/22/09
Super healthy >> go to work>> Driving home>> seizure>> close call>> we're okay!>> paramedics>> what the???>> hospital>> CT scan>> "you have a brain tumor">> No, just kidding its an arteriovenous malformation>> Becky and Parents arrive>> go home>> wait>>wait>> wait>> wait>> wait>> appointment with neurosurgeon>> "this is pretty darn serious">> uh oh>> am I going to die?>> we all die>> but not at 28>> well, some of us>> fuck that>> hospital>> brain biopsy>> intensive care>> listen to Beatles, talk with nurse, visited by wonderful people>> get catheter out>> go home>> wait>> wait>> wait>> emails, cards, and food from amazing people>> wait>> go back to work>> wait>> wait>> get results>> Grade II>> yea!>> but extensive>> oh.>> oligodendroglioma>> huh?>> of the options available that's good>> oh okay good>> meet with neurosurgeon>> meet with radiation oncologist>> meet with medical oncologist>> meet with another neurosurgeon>> another seizure>> another ER>> Dilantin level super low>> up the dosage>> up the dosage again>> dizzy pretty much all the time>> get chromosome results>> mostly good>> Close to treatment plan>> Primary Wave II of Cycle wave (c) of Supercycle wave (a) of Grand SuperCycle wave (IV) begins in the stock market (that's a rally)>> NCAA Tournament starts>> Carolina wins>> Carolina wins again and again>> Carolina Wins National Championship and I know I'm going to make it!
Hopefully beginning treatment soon. Almost certainly a combo of radiation and chemotherapy. Not operable. More soon.
Begin: 1/22/09
Super healthy >> go to work>> Driving home>> seizure>> close call>> we're okay!>> paramedics>> what the???>> hospital>> CT scan>> "you have a brain tumor">> No, just kidding its an arteriovenous malformation>> Becky and Parents arrive>> go home>> wait>>wait>> wait>> wait>> wait>> appointment with neurosurgeon>> "this is pretty darn serious">> uh oh>> am I going to die?>> we all die>> but not at 28>> well, some of us>> fuck that>> hospital>> brain biopsy>> intensive care>> listen to Beatles, talk with nurse, visited by wonderful people>> get catheter out>> go home>> wait>> wait>> wait>> emails, cards, and food from amazing people>> wait>> go back to work>> wait>> wait>> get results>> Grade II>> yea!>> but extensive>> oh.>> oligodendroglioma>> huh?>> of the options available that's good>> oh okay good>> meet with neurosurgeon>> meet with radiation oncologist>> meet with medical oncologist>> meet with another neurosurgeon>> another seizure>> another ER>> Dilantin level super low>> up the dosage>> up the dosage again>> dizzy pretty much all the time>> get chromosome results>> mostly good>> Close to treatment plan>> Primary Wave II of Cycle wave (c) of Supercycle wave (a) of Grand SuperCycle wave (IV) begins in the stock market (that's a rally)>> NCAA Tournament starts>> Carolina wins>> Carolina wins again and again>> Carolina Wins National Championship and I know I'm going to make it!
Hopefully beginning treatment soon. Almost certainly a combo of radiation and chemotherapy. Not operable. More soon.
J Karma Army Walk for Epilepsy
Members,
The J Karma Army Golden J Sub-Committee has approved our first charitable event to be held in conjunction with the Epilepsy Foundation's Strides 5k on April 19th. Come out and join the JKA! Simply visit www.epilepsycolorado.org and select the J Karma Army from the teams list. Get your official shirt by selecting the link in the upper right corner of the blog. A shirt and/or North Carolina blue is a requirement of participation.
The J Karma Army Golden J Sub-Committee has approved our first charitable event to be held in conjunction with the Epilepsy Foundation's Strides 5k on April 19th. Come out and join the JKA! Simply visit www.epilepsycolorado.org and select the J Karma Army from the teams list. Get your official shirt by selecting the link in the upper right corner of the blog. A shirt and/or North Carolina blue is a requirement of participation.
Friday, March 27, 2009
The Golden J
I believe that killing this tumor in my head has to start with me. Any extra help like chemo and radiation is great, but it has to begin with me. This isn't a religious theory but is something which has been demonstrated to me through years of beating my body up. I figure that looking at my diet is the logical first step. Even if its all just placebo I figure that it helps me think I'm killing it which can only help, right?
I believe this goes for a lot of things. We've all heard the story of the guy who was diagnosed and then just watched comedies for 6 months and was miraculously healed. Attitude makes a big difference in everything you do. At least it does for me. So with that I'm introducing the "Golden Js."
The Golden J award represents the highest level of cancer-fighting properties and has been selected by the J Karma Army Golden J Sub-Committee. Each item on this list has been thoroughly screened and tested for quality and results. You can trust that anything you find on this list has the official endorsement of the J Karma Army.
My friend Rob turned me on to an article written by David Servan-Schreiber that I quite like. It is about foods which have proven cancer killing properties. This is for cancer prevention too so check it out even if you don't have cancer. Here it is. http://www.msnbc.msn.com/id/26559677/?pg=1
I'll break it down for you because I have switched over to a cancer-killing diet, but it is an official recommendation of the J Karma Army Golden J Sub-committee that you read it. I can hear the little bastards screaming with terror every time I drink a cup of tea.
Please reference the sidebar at right for selections made by the J Karma Army Golden J Sub-committee. These items meet our rigorous standards and have been given the esteemed "Golden J" for their quality in cancer fighting. I personally recommend them.
I believe this goes for a lot of things. We've all heard the story of the guy who was diagnosed and then just watched comedies for 6 months and was miraculously healed. Attitude makes a big difference in everything you do. At least it does for me. So with that I'm introducing the "Golden Js."
The Golden J award represents the highest level of cancer-fighting properties and has been selected by the J Karma Army Golden J Sub-Committee. Each item on this list has been thoroughly screened and tested for quality and results. You can trust that anything you find on this list has the official endorsement of the J Karma Army.
My friend Rob turned me on to an article written by David Servan-Schreiber that I quite like. It is about foods which have proven cancer killing properties. This is for cancer prevention too so check it out even if you don't have cancer. Here it is. http://www.msnbc.msn.com/id/26559677/?pg=1
I'll break it down for you because I have switched over to a cancer-killing diet, but it is an official recommendation of the J Karma Army Golden J Sub-committee that you read it. I can hear the little bastards screaming with terror every time I drink a cup of tea.
Please reference the sidebar at right for selections made by the J Karma Army Golden J Sub-committee. These items meet our rigorous standards and have been given the esteemed "Golden J" for their quality in cancer fighting. I personally recommend them.
Tuesday, March 24, 2009
? is for chromosome
Results of my chromosome test are hot off the presses. I've been waiting for this information since my brain biopsy on February, 9. Things move a little slower in Colorado apparently.
Anyway, looks like I have double deletion of the cromosome 1p and 19q which is favorable for oligodendroglioma. I think this means we have a better chance of fighting it, but PLEASE SPARE ME THE RESULTS YOU FIND ON GOOGLE ABOUT THIS OUTCOME. I have already worked myself into a tizzy several times by doing this and I'll take the feedback of the neurooncologist over wikipedia.
So that's good news.
Bad news is that I also lack P-ten. The lack of this chromosome is usually associated with more aggressive tumors.
My biopsy sample came back as a Grade II tumor (low grade), but there is some evidence to suggest now that parts of the cancer may be acting more aggressively than others. The genetic markers are just another step in the (glacial) process and I'm hoping to get in to see the neurooncologist this week to add her recommendation for the treatment plan. We know that the tumor is inoperable due to its size and nature.
Overall, good news for the most part. but just more reasons to bee positive!
Anyway, looks like I have double deletion of the cromosome 1p and 19q which is favorable for oligodendroglioma. I think this means we have a better chance of fighting it, but PLEASE SPARE ME THE RESULTS YOU FIND ON GOOGLE ABOUT THIS OUTCOME. I have already worked myself into a tizzy several times by doing this and I'll take the feedback of the neurooncologist over wikipedia.
So that's good news.
Bad news is that I also lack P-ten. The lack of this chromosome is usually associated with more aggressive tumors.
My biopsy sample came back as a Grade II tumor (low grade), but there is some evidence to suggest now that parts of the cancer may be acting more aggressively than others. The genetic markers are just another step in the (glacial) process and I'm hoping to get in to see the neurooncologist this week to add her recommendation for the treatment plan. We know that the tumor is inoperable due to its size and nature.
Overall, good news for the most part. but just more reasons to bee positive!
Proper Hospital Ride Etiquette
I am not allowed to drive since suffering a seizure on January 22nd. This means that I either use my legs like a sucker or get a ride where I need to go. Unfortunately I need rides to medical appointments pretty frequently which is no small task given that I have to go to Denver for even the most minor of appointments. I commute via vanpool though so sometimes my coworkers let me bum a ride.
Today I had to go to the hospital to get the dilantin level in my blood taken(anti-seizure meds) from Lovely Jacqueline over at Kaiser. My boss graciously offered to give me a ride. As we sat at the corner of 17th and Downing I pompously recommended that she maybe take a left as it was an easier way to get to the hospital. The look she gave me would have killed a small moose but she very patiently reminded me that she lives about 2 blocks from St. Joes and that it was her hospital too. I thought there would be bloodshed but we continued on down 17th to Lafayette.
Turns out, this is a much better way to go...
Apparently, I'm a really awful backseat driver. My wife is already tired of this and I fear I may not be receiving rides anymore. I apologize freqently, but continue to think I could do better.
I remind all of you suffering from epilepsy or who can't drive to hold your tongue and display the proper etiquette when riding to your appointments. Failure to do so may have dire consequences. I'll have to diversify my ride givers.
Today I had to go to the hospital to get the dilantin level in my blood taken(anti-seizure meds) from Lovely Jacqueline over at Kaiser. My boss graciously offered to give me a ride. As we sat at the corner of 17th and Downing I pompously recommended that she maybe take a left as it was an easier way to get to the hospital. The look she gave me would have killed a small moose but she very patiently reminded me that she lives about 2 blocks from St. Joes and that it was her hospital too. I thought there would be bloodshed but we continued on down 17th to Lafayette.
Turns out, this is a much better way to go...
Apparently, I'm a really awful backseat driver. My wife is already tired of this and I fear I may not be receiving rides anymore. I apologize freqently, but continue to think I could do better.
I remind all of you suffering from epilepsy or who can't drive to hold your tongue and display the proper etiquette when riding to your appointments. Failure to do so may have dire consequences. I'll have to diversify my ride givers.
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