Monday's Procedure and History of the Tumor
Hi everyone and thanks for all of your support and well wishes. Unfortunately, I have found myself out of time to get everything done I wanted to do before being admitted to the hospital. My last resort is to send this global Email to give everyone an idea of what procedures will be taking place at the hospital. I don't want to catch anyone off guard, but I was recently diagnosed with a brain tumor and this could be the worst way to let people know, but it happens to be the easiest technique. There are no gory details here, but if you're sensitive to potential unpleasant news, please disregard this message. Note that I am not expecting unpleasant news, I just don't want to upset anyone.
I really wanted to get a website or two up and running to provide a lot of background on my symptoms, diagnoses, and expected treatments, but I didn't have the time. The closest thing I have is this site http://marksmelon.blogspot.com/. I can update it from my cell phone with comments and pictures, but I don't know when I'll get to it. Under the "MRI Post Attempt" entry, clicking on the word "link" toward the bottom of the paragraph will open an animated scan of one of my MRIs. I colored the tumor red in this scan.
My surgery is being performed at Moffitt Cancer Center in Tampa. I have to be there at 6:15AM Monday morning and the surgery is scheduled for 8:15AM. The surgery will last 6 to 10 hours and then I will be in intensive care for 3 days. After that, I will be in a private recovery room for at least a week. I don't think it will be Club Med, but the room will supposedly have high speed internet access which could come in handy to stay in touch with everyone.
Laura has been taking excellent care of me. My father, Bud, and his girlfriend, Karen, are in town for the duration of my hospital stay. My brother, Scott, is also in town for the week. Tomorrow will be a much rougher day for them than it will be for me since I will be unconscious. I should regain some consciousness in the evening.
The tumor is located in the fourth ventricle of my brain, which is centered toward the rear of my head, in between my medulla oblongata and my cerebellum. The medulla oblongata controls involuntary functions such as breathing and heartbeat and the cerebellum has a lot to do with motor skills. To see it on an MRI, the tumor is obviously impinging on the surrounding structures quite a bit. It is roughly 3.5cm in diameter, or nearly the size of a golf ball. The surgeon does not expect to get it all out as it's not worth the risk to the surrounding critical functions. They will attempt to get as much as possible, erring on the side of safety. "Maximal safe resection."
The doctors will be shaving the back of my head and drilling a hole about an inch in diameter. When I was in the hospital Friday for pre-operative consultation, they stuck "fiducials" or points of reference on my head with adhesive. Had I known they were going to do this, I would have shaved my hair back quite a bit to make it easier for them. As it turns out, they DO NOT want me to attempt any type of shaving so as not to introduce any chance of infection. I couldn't leave well enough alone, so this evening I had Laura trim my hair to about 1/4 inch. No chance of nicks there.
Due to the location of the tumor, the doctor suspects it is likely an ependymoma. This type of tumor is normally benign, but the doctor was very hesitant to give any definitive answers because they can't tell exactly what it is until they extract it and perform a full biopsy. Depending on the type of tumor it is and how much they are able to remove, further courses of action may very well need to be taken. The most likely would be to target the remains with concentrated levels of radiation. This process cannot start until 3-4 weeks after surgery, but it is done with precise instrumentation that does its targeting without intruding into the brain.
I guess I'm gradually working backward, so I'm just going to jump back to the beginning and then move forward again. My initial symptoms showed up in the middle of May. I suddenly became nauseous all of the time. I also had some dizziness, but not enough to be alarmed. My Primary Care Physician pursued stomach issues and prescribed Nexium for me. After 10 days of Nexium, I insisted that it had no effect, but he kept me on it for another month. When he finally referred me to a specialist - a gastroenterologist, it took me a month to consult with the specialist due to his scheduling and then almost another month to have an endoscopy, which basically put a camera down my esophagus into my stomach. By this time, it was the second week of August. The endoscopy was negative for any stomach irregularities. I didn't think I was imagining things...
From May through now, the nausea has been persistent and strange. I've had a lot of heartburn in the past, but the nausea was accompanied by a worse kind of pain deeper in my stomach. We went on several small trips throughout the summer and none of them came close to being as enjoyable as they should have been. I had to eat bland food and a lot of physical activity would wear me out. This culminated, unbeknownst to me, in July when Laura and I spent a weekend in Sedona, Arizona prior to a business trip I had. When we arrived in Phoenix, it was 118 degrees. Luckily, Sedona dropped back to about 100 degrees. We spent about 4 hours hiking on red rock formations on Saturday afternoon and toward the end of the hike I was feeling weak and delirious. We went back to our car and I lost my portable GPS, but I didn't even car to look for it, which should have been a sign. Luckily, a good samaritan found the GPS and returned it, but my hiking was done.
Symptoms started to get worst toward the second week of August. I stopped going to the gym because the exertion would make me physically sick. Then I started to get pounding headaches. Then the headaches started to occur more often and more severely within a couple of weeks' time. On Monday, August 21st, I set up an appointment to see my PCP on the 22nd. I told him about the headaches and he did some routine tests. Toward the end of the exam, I mentioned that I thought my balance might be off, so he focused on that. The telling test was a DUI-style walk a straight line, heel-to-toe. I almost fell over. He schedule a CAT scan for the next day.
I had my CAT scan around 2:15PM on Wednesday, August 23rd. I threw up when I arrived for the appointment, and then again as I left in the parking lot. I made my way home and laid down. My doctor called me at 3:28PM to tell me I had a brain tumor. He scheduled me for an MRI the following day and recommended a local neurosurgeon, but he wasn't available for a week. It turns out that Laura's boss knew a neurosurgeon in the same practice and he was able to fit us in the following Monday morning at 9:00AM. This initial neurosurgeon was very straight-up and said he wouldn't be offended if I got a second opinion. It was a nice way of prodding me along. He recommended I see the top neurosurgeon at Moffitt Cancer Center and got me in there Wednesday (8/30) morning at 9:00AM.
Dr. Steven Brem at Moffitt has outstanding credentials and prior to meeting with him, my father was able to drive down. Together with Laura, the three of us asked as many questions as possible and Dr. Brem had answers for all of them. We had immediate confidence in him. Just to be thorough, we also researched other options as well. In Florida, our second choice was Jackson Memorial Hospital in Miami and our third choice was Shands Hospital in Gainesville. A friend of a friend also got me a consultation with a neurosurgeon at the Cleveland Clinic, which is widely renown as the number 5 brain tumor hospital in the US. Unfortunately, the Cleveland Clinic introduced many other extenuating circumstances, not the least of which was potentially having no insurance coverage there. We spent so much time in a whirlwind of research that we just had to make a decision and move forward with it. So I'll be at Moffitt.
I'm going to wind this down as I probably should try to get some sleep. Since I'm going to shotgun this message to a lot of people, I'm not going to give any contact phone numbers. If you have one, you can call, but things will be hectic for a while. I suggest Emailing or referring to my blog - although it may not be updated for a while. If I can't do it, I'll have Laura or Scott update it. I'm not all that familiar with Blogs myself, but if you visit the blog, you can leave comments that other people can read and provide feedback on. It can be a nice community. I'm still going to try to post a few pics tonight. One last shameless plug since I have lost casual touch with some of you. Cards are welcome, although blog entries can suffice. Anything will take my mind off of the situation...
Hopefully, I will be able to talk to some people within a few days. I don't know how quick I'll ounce back, but I do hope it is quick.
Thanks again for everyone's support.
-Mark
I really wanted to get a website or two up and running to provide a lot of background on my symptoms, diagnoses, and expected treatments, but I didn't have the time. The closest thing I have is this site http://marksmelon.blogspot.com/. I can update it from my cell phone with comments and pictures, but I don't know when I'll get to it. Under the "MRI Post Attempt" entry, clicking on the word "link" toward the bottom of the paragraph will open an animated scan of one of my MRIs. I colored the tumor red in this scan.
My surgery is being performed at Moffitt Cancer Center in Tampa. I have to be there at 6:15AM Monday morning and the surgery is scheduled for 8:15AM. The surgery will last 6 to 10 hours and then I will be in intensive care for 3 days. After that, I will be in a private recovery room for at least a week. I don't think it will be Club Med, but the room will supposedly have high speed internet access which could come in handy to stay in touch with everyone.
Laura has been taking excellent care of me. My father, Bud, and his girlfriend, Karen, are in town for the duration of my hospital stay. My brother, Scott, is also in town for the week. Tomorrow will be a much rougher day for them than it will be for me since I will be unconscious. I should regain some consciousness in the evening.
The tumor is located in the fourth ventricle of my brain, which is centered toward the rear of my head, in between my medulla oblongata and my cerebellum. The medulla oblongata controls involuntary functions such as breathing and heartbeat and the cerebellum has a lot to do with motor skills. To see it on an MRI, the tumor is obviously impinging on the surrounding structures quite a bit. It is roughly 3.5cm in diameter, or nearly the size of a golf ball. The surgeon does not expect to get it all out as it's not worth the risk to the surrounding critical functions. They will attempt to get as much as possible, erring on the side of safety. "Maximal safe resection."
The doctors will be shaving the back of my head and drilling a hole about an inch in diameter. When I was in the hospital Friday for pre-operative consultation, they stuck "fiducials" or points of reference on my head with adhesive. Had I known they were going to do this, I would have shaved my hair back quite a bit to make it easier for them. As it turns out, they DO NOT want me to attempt any type of shaving so as not to introduce any chance of infection. I couldn't leave well enough alone, so this evening I had Laura trim my hair to about 1/4 inch. No chance of nicks there.
Due to the location of the tumor, the doctor suspects it is likely an ependymoma. This type of tumor is normally benign, but the doctor was very hesitant to give any definitive answers because they can't tell exactly what it is until they extract it and perform a full biopsy. Depending on the type of tumor it is and how much they are able to remove, further courses of action may very well need to be taken. The most likely would be to target the remains with concentrated levels of radiation. This process cannot start until 3-4 weeks after surgery, but it is done with precise instrumentation that does its targeting without intruding into the brain.
I guess I'm gradually working backward, so I'm just going to jump back to the beginning and then move forward again. My initial symptoms showed up in the middle of May. I suddenly became nauseous all of the time. I also had some dizziness, but not enough to be alarmed. My Primary Care Physician pursued stomach issues and prescribed Nexium for me. After 10 days of Nexium, I insisted that it had no effect, but he kept me on it for another month. When he finally referred me to a specialist - a gastroenterologist, it took me a month to consult with the specialist due to his scheduling and then almost another month to have an endoscopy, which basically put a camera down my esophagus into my stomach. By this time, it was the second week of August. The endoscopy was negative for any stomach irregularities. I didn't think I was imagining things...
From May through now, the nausea has been persistent and strange. I've had a lot of heartburn in the past, but the nausea was accompanied by a worse kind of pain deeper in my stomach. We went on several small trips throughout the summer and none of them came close to being as enjoyable as they should have been. I had to eat bland food and a lot of physical activity would wear me out. This culminated, unbeknownst to me, in July when Laura and I spent a weekend in Sedona, Arizona prior to a business trip I had. When we arrived in Phoenix, it was 118 degrees. Luckily, Sedona dropped back to about 100 degrees. We spent about 4 hours hiking on red rock formations on Saturday afternoon and toward the end of the hike I was feeling weak and delirious. We went back to our car and I lost my portable GPS, but I didn't even car to look for it, which should have been a sign. Luckily, a good samaritan found the GPS and returned it, but my hiking was done.
Symptoms started to get worst toward the second week of August. I stopped going to the gym because the exertion would make me physically sick. Then I started to get pounding headaches. Then the headaches started to occur more often and more severely within a couple of weeks' time. On Monday, August 21st, I set up an appointment to see my PCP on the 22nd. I told him about the headaches and he did some routine tests. Toward the end of the exam, I mentioned that I thought my balance might be off, so he focused on that. The telling test was a DUI-style walk a straight line, heel-to-toe. I almost fell over. He schedule a CAT scan for the next day.
I had my CAT scan around 2:15PM on Wednesday, August 23rd. I threw up when I arrived for the appointment, and then again as I left in the parking lot. I made my way home and laid down. My doctor called me at 3:28PM to tell me I had a brain tumor. He scheduled me for an MRI the following day and recommended a local neurosurgeon, but he wasn't available for a week. It turns out that Laura's boss knew a neurosurgeon in the same practice and he was able to fit us in the following Monday morning at 9:00AM. This initial neurosurgeon was very straight-up and said he wouldn't be offended if I got a second opinion. It was a nice way of prodding me along. He recommended I see the top neurosurgeon at Moffitt Cancer Center and got me in there Wednesday (8/30) morning at 9:00AM.
Dr. Steven Brem at Moffitt has outstanding credentials and prior to meeting with him, my father was able to drive down. Together with Laura, the three of us asked as many questions as possible and Dr. Brem had answers for all of them. We had immediate confidence in him. Just to be thorough, we also researched other options as well. In Florida, our second choice was Jackson Memorial Hospital in Miami and our third choice was Shands Hospital in Gainesville. A friend of a friend also got me a consultation with a neurosurgeon at the Cleveland Clinic, which is widely renown as the number 5 brain tumor hospital in the US. Unfortunately, the Cleveland Clinic introduced many other extenuating circumstances, not the least of which was potentially having no insurance coverage there. We spent so much time in a whirlwind of research that we just had to make a decision and move forward with it. So I'll be at Moffitt.
I'm going to wind this down as I probably should try to get some sleep. Since I'm going to shotgun this message to a lot of people, I'm not going to give any contact phone numbers. If you have one, you can call, but things will be hectic for a while. I suggest Emailing or referring to my blog - although it may not be updated for a while. If I can't do it, I'll have Laura or Scott update it. I'm not all that familiar with Blogs myself, but if you visit the blog, you can leave comments that other people can read and provide feedback on. It can be a nice community. I'm still going to try to post a few pics tonight. One last shameless plug since I have lost casual touch with some of you. Cards are welcome, although blog entries can suffice. Anything will take my mind off of the situation...
Hopefully, I will be able to talk to some people within a few days. I don't know how quick I'll ounce back, but I do hope it is quick.
Thanks again for everyone's support.
-Mark
posted by Mark at 9/18/2006 01:21:00 AM
1 Comments:
Our thoughts and prayers are with you. Will watch for recovery updates! Love to all of you. Lu & Gene.
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