I am feeling signifcantly better then I have recently. I am sure you will all be pleased to know I had a bowel movement this morning (I can't believe that moving my bowels has become such a significant goal in my everyday life, and I really can't believe so many people actually ASK me about it!). I was able to get through the night on no vicodin so it looks like the patch is working. I also feel less tired.
Today, I might go so far as to say I feel good. Haven't had that feeling in a while; haven't had a hopeful feeling in a while. Nice to experience that again.
Friday, February 29, 2008
Thursday, February 28, 2008
Thursday
Here is the latest update.
Yesterday I began on a Fentanyl pain patch, along with Vicodyn for acute pain. This seems to have helped. My pain is less, not gone completely but bearable. I don't believe the patch has completely kicked in yet so we'll see how that works as the day goes on.
I haven't really had a chance to write about how I am feeling about all of this. I have a strong relationship with my Higher Power and have pretty much not questioned a lot of things that have happened to me in my life. Over the past few days, I have begun to seriously question my concept that my Higher Power is unquestionable (hopefully that makes sense). It may be blasphamous to say this, but God is a bit of an asshole. Why my family and myself should have to go through this, when we did nothing to deserve it, makes me question the whole "God has a plan" idea. When you think about it, if God is supposed to be this all caring, all things are possible entity, why does He / She let bad things happen to people who did nothing to deserve them? I mean, the people in New Orleans didn't do anything to deserve Katrina. And, there are plenty of people who have horrible things happen to them that have done nothing but good things, who praise God and try to walk in His / Her footsteps. Why do we praise this entity? What has this entity really done for any of us? I mean, really - an inteligent person would have some issues with this whole praise / worship thing. I don't know what the answer is. All I know is, I am pissed. This is not fair, not to me, not to my family or to my friends. And there is a lot of unfairness I see. And if God expects me to praise Him / Her, then He / She has some explaining to do now.
Sorry if the above offends anyone.
Yesterday I began on a Fentanyl pain patch, along with Vicodyn for acute pain. This seems to have helped. My pain is less, not gone completely but bearable. I don't believe the patch has completely kicked in yet so we'll see how that works as the day goes on.
I haven't really had a chance to write about how I am feeling about all of this. I have a strong relationship with my Higher Power and have pretty much not questioned a lot of things that have happened to me in my life. Over the past few days, I have begun to seriously question my concept that my Higher Power is unquestionable (hopefully that makes sense). It may be blasphamous to say this, but God is a bit of an asshole. Why my family and myself should have to go through this, when we did nothing to deserve it, makes me question the whole "God has a plan" idea. When you think about it, if God is supposed to be this all caring, all things are possible entity, why does He / She let bad things happen to people who did nothing to deserve them? I mean, the people in New Orleans didn't do anything to deserve Katrina. And, there are plenty of people who have horrible things happen to them that have done nothing but good things, who praise God and try to walk in His / Her footsteps. Why do we praise this entity? What has this entity really done for any of us? I mean, really - an inteligent person would have some issues with this whole praise / worship thing. I don't know what the answer is. All I know is, I am pissed. This is not fair, not to me, not to my family or to my friends. And there is a lot of unfairness I see. And if God expects me to praise Him / Her, then He / She has some explaining to do now.
Sorry if the above offends anyone.
Wednesday, February 27, 2008
Update - 8:30 PM
I am in much less pain now then I have been in for the past two days. I am still in pain, but it is bearable, rather then the unbearable pain I was in Monday and Tuesday.
Morning Update
Not taking pain pills was a very bad idea. Today I am scheduled to start on a painkiller patch which should give me a steady amount of relief.
I am still in substantial pain but it's a bit less then this time yesterday.
I am still in substantial pain but it's a bit less then this time yesterday.
Tuesday, February 26, 2008
More Lucid Update
Well... not taking pain medication was a bad idea. I am going to take whatever I need, and use a bowel stimulant to help me move. Sorry if I frightened anyone with my last post.
Tuesday Morning, 7:30 am
First I want to say thank you to everyone who called me yesterday, when I was going though a very difficult time. Your love and support means a lot to me.
I am still in quite a bit of pain. I spoke to several chordoma survivors to get some ideas on how to handle it, since the painkillers have their own side effects, particularly constipation.
When I was active in a 12 step program, one of the things I learned was how to take suggestions from people who have been there before. Sometimes, what they said is not something I really wanted to hear. This is the case now. I was told to stop taking the painkillers since the constipation is a strong side effect and can be magnifying my pain. I was also advised to exercise a little.
Not really want I wanted to hear - I really wanted them to tell me another painkiller to take, but such is not the case. I am going to try to stop taking painkillers and also try to move my bowels. Hopefully that will make some difference.
My life is reduced to bowel movement descriptions - damn.
I am still in quite a bit of pain. I spoke to several chordoma survivors to get some ideas on how to handle it, since the painkillers have their own side effects, particularly constipation.
When I was active in a 12 step program, one of the things I learned was how to take suggestions from people who have been there before. Sometimes, what they said is not something I really wanted to hear. This is the case now. I was told to stop taking the painkillers since the constipation is a strong side effect and can be magnifying my pain. I was also advised to exercise a little.
Not really want I wanted to hear - I really wanted them to tell me another painkiller to take, but such is not the case. I am going to try to stop taking painkillers and also try to move my bowels. Hopefully that will make some difference.
My life is reduced to bowel movement descriptions - damn.
Monday, February 25, 2008
Update
I spoke with Dr. Firoozmand, the doctor who has been working with me coordinating my care so far. He informs me that on the bone scan they found significant lesions in many areas, including my spine, my ribs, my pelvis, and my legs.
This is not presenting as a normal chordoma. They are not sure what they are dealing with and can't really give me a whole lot more information. The chordoma specialist in San Francisco has been in touch with Dr. Firoozmand and has made arrangements to have all of my scans sent to him for evaluation. Hopefully he will have more to say.
I am in a great deal of pain right now and have been taking a lot of pain meds all day with little relief. This news doesn't make me feel any better.
I know this sounds matter of fact and it is. I can't deal with the emotion of this right now. I'll try to put some words together at some point, but I can't imagine what I can really say.
This is not presenting as a normal chordoma. They are not sure what they are dealing with and can't really give me a whole lot more information. The chordoma specialist in San Francisco has been in touch with Dr. Firoozmand and has made arrangements to have all of my scans sent to him for evaluation. Hopefully he will have more to say.
I am in a great deal of pain right now and have been taking a lot of pain meds all day with little relief. This news doesn't make me feel any better.
I know this sounds matter of fact and it is. I can't deal with the emotion of this right now. I'll try to put some words together at some point, but I can't imagine what I can really say.
Monday Morning, 6 AM
I am in quite a bit of pain at the moment. The pain actually woke me up last night for the first time in about five weeks. Unfortunately I had to break out the big gun pain killers so I am sort of out of it; however I did want to try to write something.
I have a lot to say, but it's going to have to wait until later in the day.
I have a lot to say, but it's going to have to wait until later in the day.
Saturday, February 23, 2008
Update -2-23-2008
I had the bone scan yesterday. When we get the results, I will post them here.
I have a CT biopsy scheduled for 2-27. We may delay this because several people who are familiar with chordoma say that a biopsy is counter indicated due to seeding of the tumor (in other words, a biopsy may spread it around). Since we are still unsure as to if my diagnosis is definately chordoma or not, we are not sure how things are going to proceed. We have a plan of action with the medical people and hope to get some definative answers soon.
I'm sort of tired today and in a little bit of pain. I'll try to post more later on.
I have a CT biopsy scheduled for 2-27. We may delay this because several people who are familiar with chordoma say that a biopsy is counter indicated due to seeding of the tumor (in other words, a biopsy may spread it around). Since we are still unsure as to if my diagnosis is definately chordoma or not, we are not sure how things are going to proceed. We have a plan of action with the medical people and hope to get some definative answers soon.
I'm sort of tired today and in a little bit of pain. I'll try to post more later on.
Friday, February 22, 2008
Update 2-22-2008
I'm going in for the bone scan today. When it is finished and I get the results, I will post them here.
I feel good today, no pain. When I got up this morning, I almost forgot I have this damn thing.
I feel good today, no pain. When I got up this morning, I almost forgot I have this damn thing.
Wednesday, February 20, 2008
Telling The Truth
I have spent a lot of time trying to convince myself and others that I feel ok and that I am confident that everything is going to end up fine. Right now, the truth is I am scared shitless. I am frightened. I don't know what is going to happen to me, and I don't want to pretend like I am strong and confident anymore. I really don't want to be strong right now, I don't feel strong right now. Maybe in a few minutes I will feel strong again, but right now I can't handle this and I don't want to handle this anymore.
What I'm Listening To - Second Edition
I've been asked by several readers to make this a regular feature. I'm only too happy to oblige.
The Hoosiers, "Goodbye Mr. A" (EP)
This song grabs me from the start. The opening line is, "There's a hole in your logic / You who know all the answers / How you can sigh and say 'magic' / And expect me to buy it?" Now how can I resist a song with an opening like that? Bouncy, bright, with a honky tonk piano driving it forward, this is a song that gets stuck in my head, that I find myself humming at odd moments, and I don't mind a bit.
The Tellers, "More" (EP)
I believe these guys are from Wales. They sing an accented sort of English that I can kinda sorta understand. This song belongs in a John Hughes movie, in my opinion. It's just the sort of song I can imagine Molly Ringwald dancing to.
The Hoosiers, "Goodbye Mr. A" (EP)
This song grabs me from the start. The opening line is, "There's a hole in your logic / You who know all the answers / How you can sigh and say 'magic' / And expect me to buy it?" Now how can I resist a song with an opening like that? Bouncy, bright, with a honky tonk piano driving it forward, this is a song that gets stuck in my head, that I find myself humming at odd moments, and I don't mind a bit.
The Tellers, "More" (EP)
I believe these guys are from Wales. They sing an accented sort of English that I can kinda sorta understand. This song belongs in a John Hughes movie, in my opinion. It's just the sort of song I can imagine Molly Ringwald dancing to.
Tuesday, February 19, 2008
More Random Thoughts
I have been reading the Big Book of Alcoholics Anonymous lately. I realize that I have the tools I need to get through whatever the future brings me. If there has ever been a time in my life where taking things "one day at a time" is more important, I don't know when it would be. Physically, my life is governed by the fear of the pain this thing causes me. It is totally unpredictable and there is no associated action that either brings it on or removes it. I could be sitting here right now, pain free, and in five minutes when I go to get up be in a lot of pain. Since there is no rhyme or reason, I obviously can't control it, so I've stopped trying to. Perhaps trying to control one's physical pain is a foreign concept to some. Perhaps it is obvious to many that sometimes, physical pain is not something within one's control. To me, I want to control everything, including managing my pain, and to abandon that concept is a hard thing.
I have also given up trying to manage the future, what my treatments will be like, and what the results might be. It is not for me to manage anything. I can only control what I am able to control, which is my attitude and outlook. Someone said to me today, "You seem to be handling this quite well." As I've said before, my mind simply cannot conceive of what has happened to me, so it shuts down. My handling of this situation is not a choice. My mind simply can't comprehend, so I don't even try. I just try to be where I am, keep my sense of humor, not be afraid, be grateful, and try not to go into the dark places my mind takes me (food, impulsive behavior, etc.). I have experienced fear and pain in my life. I realize now that I am equiped with the tools I need to not only survive this thing, but thrive.
Also, let me briefly clarify something: if I do have chordoma (which I was informed today they are not entirely sure I have), it is a slow growing tumor which is not going to kill me today, tomorrow, or this year. It will kill me eventually. But I am not making a "bucket list." The treatment is going to be a bitch, but it has to be done. I hope that this puts my situation into some perspective.
I have also given up trying to manage the future, what my treatments will be like, and what the results might be. It is not for me to manage anything. I can only control what I am able to control, which is my attitude and outlook. Someone said to me today, "You seem to be handling this quite well." As I've said before, my mind simply cannot conceive of what has happened to me, so it shuts down. My handling of this situation is not a choice. My mind simply can't comprehend, so I don't even try. I just try to be where I am, keep my sense of humor, not be afraid, be grateful, and try not to go into the dark places my mind takes me (food, impulsive behavior, etc.). I have experienced fear and pain in my life. I realize now that I am equiped with the tools I need to not only survive this thing, but thrive.
Also, let me briefly clarify something: if I do have chordoma (which I was informed today they are not entirely sure I have), it is a slow growing tumor which is not going to kill me today, tomorrow, or this year. It will kill me eventually. But I am not making a "bucket list." The treatment is going to be a bitch, but it has to be done. I hope that this puts my situation into some perspective.
Monday, February 18, 2008
Some Random Thoughts
There are times when I feel anticipation over what is going to happen next. It may sound strange, but in a way, this whole thing is kind of a big adventure - I don't know what is going to happen, I don't know when it's going to happen, I wonder what the treatment is going to be like, what my life is going to be like - and I feel almost excited. But then, just as quickly, the impact of having this hits me, and I remember - I'm not working, the treatment will be painful, my pain may not go away, my days are beginning to blend into one another - and that feeling of anticipation is replaced by a feeling of depression. My life is so interupted right now...
The roller coaster is going down the hill; and I am just a passenger. The only things in control are gravity and God. I don't know what will happen next; I can only control those things I can control, and the rest is not up to me.
The roller coaster is going down the hill; and I am just a passenger. The only things in control are gravity and God. I don't know what will happen next; I can only control those things I can control, and the rest is not up to me.
Saturday, February 16, 2008
My Friend Chordoma
POST EDITED ON 3/28/2008
AT THE TIME THIS WAS WRITTEN, I THOUGHT I HAD CHORDOMA. I DO NOT HAVE CHORDOMA. PLEASE READ MY MOST RECENT ENTRIES FOR MORE INFO.
Apparently the type of tumor I have is called chordoma. Here is a link to an F.A.Q. about chordoma: http://www.chordomafoundation.org/chordoma/
AT THE TIME THIS WAS WRITTEN, I THOUGHT I HAD CHORDOMA. I DO NOT HAVE CHORDOMA. PLEASE READ MY MOST RECENT ENTRIES FOR MORE INFO.
Apparently the type of tumor I have is called chordoma. Here is a link to an F.A.Q. about chordoma: http://www.chordomafoundation.org/chordoma/
Friday, February 15, 2008
Update
The doctor consulted with the bone endocronologist and is recommending additional tests: a CT guided biopsy and a bone scan. The bone scan is scheduled for next Friday, Feb. 22nd. They are still working on getting the biopsy approved.
More to follow.
More to follow.
Thursday, February 14, 2008
Some Unwanted News
I had my consultation with the doctor this afternoon. He got the MRI results and in his words, they threw him a curveball. Here's how I understand the situation:
I have a tumor between my tailbone and my rectum; I knew that for a while. There are also lesions in other places which are likely connected to this tumor. It is likely that this tumor may be malignant. The question now is, to what extent has this tumor spread and how to deal with it?
My doctor is consulting with a bone endocronologist and will call me tomorrow. Probably what will happen next is I will have a CT scan biopsy so they can see what they are dealing with. I may have radiation, or go straight to surgery, or some combination. When I have more information, I will post it here. Obviously this has been very overwhelming and I am still trying to comprehend what has just happened to me. I am not OK. I feel sad and scared and pissed off that I have to go through this. But I will try to live in the now and not go down the road of assumptions. When I get more information, I will let you all know. Please think good thoughts for me and if you feel like it, e-mail me or call me. I feel alone even though I have wonderful family support. Thanks.
I have a tumor between my tailbone and my rectum; I knew that for a while. There are also lesions in other places which are likely connected to this tumor. It is likely that this tumor may be malignant. The question now is, to what extent has this tumor spread and how to deal with it?
My doctor is consulting with a bone endocronologist and will call me tomorrow. Probably what will happen next is I will have a CT scan biopsy so they can see what they are dealing with. I may have radiation, or go straight to surgery, or some combination. When I have more information, I will post it here. Obviously this has been very overwhelming and I am still trying to comprehend what has just happened to me. I am not OK. I feel sad and scared and pissed off that I have to go through this. But I will try to live in the now and not go down the road of assumptions. When I get more information, I will let you all know. Please think good thoughts for me and if you feel like it, e-mail me or call me. I feel alone even though I have wonderful family support. Thanks.
Update
I will write an update tonight after the consultation with the doctor.
I'm in a lot of pain today after not being in pain for a few days.
I'm in a lot of pain today after not being in pain for a few days.
Wednesday, February 13, 2008
The Very Latest
I had the MRI done yesterday. I was under a sedative and everything went well. We should have the results on Thursday when we meet with the doctors.
I'm feeling a bit better. The pain is less and not as constant, which I'm thankful for. I haven't had to take pain medication for a couple of days, which is great.
I have the Roger Clemens / Brian Macnahee congressional hearings on in the background. What a complete waste of time and money. Who the hell cares if Clemens did sterioids, who the hell cares if he did HGH? If I was a member of congress at that hearing, I would probably say something like this:
"This is a waste of everyone's time and resources. Our economy is in the tank; homeowners are getting foreclosed on because of other people's greed; we are completely dependent on oil, which comes mainly from countries that are run by dictators; our auto industry is failing; we're not winning the war on terror; and our government is limiting our citizens' rights more and more each day; yet somehow we feel it necessary to have a hearing about a baseball player who supposedly took performance enhancing drugs. Can we please stop being stupid and get back to trying to run the country here?"
I'm feeling a bit better. The pain is less and not as constant, which I'm thankful for. I haven't had to take pain medication for a couple of days, which is great.
I have the Roger Clemens / Brian Macnahee congressional hearings on in the background. What a complete waste of time and money. Who the hell cares if Clemens did sterioids, who the hell cares if he did HGH? If I was a member of congress at that hearing, I would probably say something like this:
"This is a waste of everyone's time and resources. Our economy is in the tank; homeowners are getting foreclosed on because of other people's greed; we are completely dependent on oil, which comes mainly from countries that are run by dictators; our auto industry is failing; we're not winning the war on terror; and our government is limiting our citizens' rights more and more each day; yet somehow we feel it necessary to have a hearing about a baseball player who supposedly took performance enhancing drugs. Can we please stop being stupid and get back to trying to run the country here?"
Sunday, February 10, 2008
Non Medical: What I'm Listening To
This is a non-medical related post, but you know me, I gotta let you know what's on the Ipod these days...
Cymande, "Bra", Renegades of Funk
I first heard this on Spike Lee's "25th Hour" soundtrack and quickly fell in love. This song is burning a groove in my hard drive, I listen to it so much. Reminds me of the best of Fela and James Brown, with a little Bob Marley thrown in. Download this. Now.
Talking Heads, "Crosseyed and Painless", More Songs about Buildings and Food
The Heads are one of my favorite bands, and this song is in my top five list. David Berne and Brian Eno collaborate and turn african rhythms into a New Wave classic. Contains one of my most quoted lyrical phrases, "Facts all come with points of View / Facts don't do what I want them To." Well said.
Chuck Berry, "You Can't Catch Me", Best Of
John Lennon quoted this song in "Come Together." The song describes Chuck's purchase of a custom "Air Mobile," complete with hideaway airplane wings and a powerful motor. These accessories come in handy when Chuck, drag racing another car, encounters the State Police on the New Jersey Turnpike in the early morning, enabling him to outrun the fuzz by taking off ("bye bye, New Jersey, I've become airborne"). You have to hear it to really appreciate it. Makes me smile when I hear it, even for the umpteeth time.
George Harrison, "What Is Life", All Things Must Pass
This song is described in Wikipedia as "a groove based number." What an understatement that is. The opening guitar lick gets me every time. The lyrics are powerful too, but I can't seem to get past that lick. It stays with you.
OK, enough indulgence on my part for today.
Cymande, "Bra", Renegades of Funk
I first heard this on Spike Lee's "25th Hour" soundtrack and quickly fell in love. This song is burning a groove in my hard drive, I listen to it so much. Reminds me of the best of Fela and James Brown, with a little Bob Marley thrown in. Download this. Now.
Talking Heads, "Crosseyed and Painless", More Songs about Buildings and Food
The Heads are one of my favorite bands, and this song is in my top five list. David Berne and Brian Eno collaborate and turn african rhythms into a New Wave classic. Contains one of my most quoted lyrical phrases, "Facts all come with points of View / Facts don't do what I want them To." Well said.
Chuck Berry, "You Can't Catch Me", Best Of
John Lennon quoted this song in "Come Together." The song describes Chuck's purchase of a custom "Air Mobile," complete with hideaway airplane wings and a powerful motor. These accessories come in handy when Chuck, drag racing another car, encounters the State Police on the New Jersey Turnpike in the early morning, enabling him to outrun the fuzz by taking off ("bye bye, New Jersey, I've become airborne"). You have to hear it to really appreciate it. Makes me smile when I hear it, even for the umpteeth time.
George Harrison, "What Is Life", All Things Must Pass
This song is described in Wikipedia as "a groove based number." What an understatement that is. The opening guitar lick gets me every time. The lyrics are powerful too, but I can't seem to get past that lick. It stays with you.
OK, enough indulgence on my part for today.
Issues with the MRI
I wasn't able to get the MRI done. I am extremely clostraphobic and was not able to complete the procedure. The doctor says he will send me to an open MRI on Monday. More to follow.
Thursday, February 7, 2008
Surgery Date Confirmed
The surgery has been approved and is scheduled for Wed. February 27th at Cedars Sinai. I have a consultation with the doctor a week from today, Thurs. February 14th, where he will discuss the MRI results and I'll have more of a sense of what to expect.
Wednesday, February 6, 2008
Tentative Surgery Sechdule
I've been notified I have a tentative date for the surgery of Wed. February 27th.
More to follow.
More to follow.
Tuesday, February 5, 2008
Update: MRI
After quite a battle with the insurance company, my MRI was approved and scheduled for Saturday Feb. 9th. Once this is done we should have a better idea of what I'm dealing with. Until then I guess I'll be waiting around trying to keep busy and out of trouble.
Sunday, February 3, 2008
Welcome / Introduction
I've created this blog to keep my friends and family updated as I go through my upcoming medical adventures. As I move through the process, you will be able to find out the latest by logging on here.
THE STORY THUS FAR...
I've been having pain in my lower back (ok, let's be frank: my ass has been hurting) for some time now. I thought it might be related to crohn's disease, or perhaps muscle pain; and whenever I mentioned it to the doctors they never seemed to think it was that big a deal. Also, the pain would come and go. But it never quite went away, and sometimes the pain was quite bad. About two weeks ago, I went bowling, and whatever I did made the pain unbearable. In addition, I was not able to go to the bathroom, so I knew this was not your ordinary pain. It was at this point this particular medical adventure began.
After seeing several doctors and having a CT scan, it was determined I have a growth between my tailbone and rectum, near the base of my spine. They tell me it's about 8 centimeters long. Whatever it is, it needs to be removed. This blog will attempt to document my journey through surgery and recovery. Also, I want to direct my friends and family here so I don't end up telling the same story eighty-five million times : ) I will continue to keep this updated as I know more and get closer to a resolution, whatever that may be.
THE STORY THUS FAR...
I've been having pain in my lower back (ok, let's be frank: my ass has been hurting) for some time now. I thought it might be related to crohn's disease, or perhaps muscle pain; and whenever I mentioned it to the doctors they never seemed to think it was that big a deal. Also, the pain would come and go. But it never quite went away, and sometimes the pain was quite bad. About two weeks ago, I went bowling, and whatever I did made the pain unbearable. In addition, I was not able to go to the bathroom, so I knew this was not your ordinary pain. It was at this point this particular medical adventure began.
After seeing several doctors and having a CT scan, it was determined I have a growth between my tailbone and rectum, near the base of my spine. They tell me it's about 8 centimeters long. Whatever it is, it needs to be removed. This blog will attempt to document my journey through surgery and recovery. Also, I want to direct my friends and family here so I don't end up telling the same story eighty-five million times : ) I will continue to keep this updated as I know more and get closer to a resolution, whatever that may be.
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