I can't believe how much life has changed in the last 2 months. One day I was living my life and the next day I found out that I had a brain tumor. Little did I realize how different life would be.
I had my brain biopsy on September 2nd. It was a bizarre experience. They didn't put me totally asleep. They just gave me some medicine so that I knew that there was something going on, I just didn't care. I knew people in the OR were talking and working on my brain, I couldn't feel it and I don't remember what was said. I do remember every once and a while they would ask me if I was okay. It only took about an hour to enter my brain and take out several pieces of the tumor. I had a cat scan afterward to make sure that there was no bleeding and then I was off to my room. I was up walking that night and home the next day.
Ever since then I have been feeling tired and my thinking gets cloudy very easily. Being able to concentrate on more than one task is thing of the past.
My leg is worse and my balance is off, so I use a wheelchair to get around most of the time. I have gained 25 pounds in the last few months from all the steroids that I am taking. One of the hardest things is the way that people look at me when we are out and about. Some people outright stare with a look of pity on there faces. "Look at that poor woman, I wonder what's wrong with her, " I imagine them thinking. It's a small thing, but one of the adjustments that must be made in my new reality.
We are in Houston at MD Anderson Cancer Center getting a second opinion. We met with the neurosurgeon on Friday. It wasn't what I had hoped. He doesn't want to operate on my tumor. I is too close to my speech and motor center. In a way I am glad that he isn't taking chances that would leave me incapacitated, but there is a part of my that just wants this thing out of my head. We met with the neuro- oncologist. She thinks radiation is the best course of action. The next step will be to meet with the radiation oncologist. We are hoping that I can do radiation in Denver, so that we can be closer to the kids. They have access to the same specialists there as they do in Houston. So now we wait to plan our trip home until we have that appointment. I am having an MRI on Friday night in Houston, so we are hoping to fly home for a few days, but are not sure that is going to work out. They are also supposed to get me appointments with the Social Worker, Nutritionist and Physical Therapy. I just want to get the ball rolling. I'm tired of waiting around.
The good thing is that I have been able to talk to other people who are "in treatment." The ones I have talked to don't necessarily have a brain tumor but they are playing the same waiting game and know what it's like. They have offered some good advice on what services are offered here, like accupuncture, support groups, and information.
Unfortunately, it's not like I am going to get radiation and life will go back to normal. I will have to be followed for the rest of my life. There is a chance that the tumor could come back in a more aggressive form and I will need more treatment. I am may never be able to go back to my nursing career. Being a nurse is part of who I am and have been for a long time. It makes me so sad to think that I will be leaving that part of my life behind. Sometimes it just overwhelms me and I wonder how I am going to make it through this. I don't want to have this brain tumor. I want to go back to life the way that it was. That, of course is not an option. I don't have choice, but to take care of this and be the best new me that I can. In one minute, I am certain that there is a reason for all of this and the next I wonder "why me."
So now I wait until tomorrow and see what it brings.
Sunday, September 28, 2008
Friday, August 29, 2008
Still waiting for the big day
It has been another crazy week. For someone who isn't working, I am really staying busy! Actually, it doesn't take much to tire me out these days, so I a little each day. Things got kind of rough at the end of last week and into the beginning of this week, but they are smoothing out now.
By last Friday, I had a built up a pretty significant sleep debt and was feeling pretty cranky. I have been on some medication for anxiety that was supposed to help me sleep, but I was still waking frequently during the night or waking up for several hours each night. I called my doctor's office last Friday for a change in medication. Unfortunately, the person on the other end failed to mention that my doctor was not in the office that day and so I wouldn't be receiving a call back. In desperation I went a bought Advil PM and took that Friday night. I had the best sleep that I had in a month. I felt like a different person.
The nurse from my doctor's office called me back on Monday to suggest an increase in medication. Unfortunately, I wasn't here to take her call and couldn't tell her that I thought I needed a sleep aid rather than anti-anxiety medication. When I called back I got the same rude person who answered the phone on Friday. She was just awful and without an ounce of compassion!! I let her have and then asked to speak to a manager. The manger unfortunately got the brunt of my ire. I tried to come at it from a professional standpoint, but I couldn't help crying. I explained the situation to her and how everytime I spoke with this one person, she was rude and sounded like she could have been taking my order at McDonald's. I said, " Maybe you see patients with brain tumors all the time, but my whole world has been turned upside down and I could use a little compassion." I also told her that dealing with their office has been one of my biggest stressors. She was extremely nice and let me vent and said she was sorry I had to go through so much. I felt a lot better just being able to let someone know how hard it has been. Tuesday I finally talked to my doctor's nurse and told her I thought I needed a med change. When Keith went down to pick up my prescription, he ran into my doctor. Keith told him that I wasn't doing well and he told Keith to bring me in that afternoon. Dr. B is so wonderful. We went down there that afternoon and he talked to me, checked out my neuro status and got me all calmed down. He gave me Rozeram to help me sleep. I have gotten a good night sleep for the last 3 days and I feel like a different person.
The other big story this week is that my mom got here on Monday. I started balling like a baby as soon as I saw her. She jumped right in and started helping out. She's been taking the kids to school and picking them up, doing the laundry and the dishes and just being there when I go on my crying jags. We even went to the spa on Wednesday and had lunch out.
Tuesday was significant because I went and got my haircut short in preparation for having to shave it off for the biopsy. I felt really bad, because I sort of sprung it on my hairdresser that I had a brain tumor. It's still weird when I tell people, because I feel bad that I know and they don't. A brain tumor is just not an ailment that you expect people to have. Anyway, she was great. She hugged me and offered to say a prayer for me and gave me the perfect haircut. She is also going to come to the house on Monday and shave my head for me. It means so much that she is willing to go out of her way to make me feel better. Thanks Sheri!!!
My husband also surprised me this week. Keith and Colin went out for a haircut and Keith came back with his head completely shaved!! He has really been acting like it is no big deal for me to have to do this, so when he came home with a completely shaved head, I was really touched. To think, under that tough scottish exterior, there really is a teddy bear!
So, now I just need to get through the weekend. I am a little nervous about the biopsy and as the time gets closer I think about it more. Of course, next week for the kids is super busy. Allison starts dance Tuesday and Thursday next week. Colin starts soccer on Wednesday. There is a back to school night on Thursday,too. It does make me sad that I will probably miss those things. My mom and Keith have it all under control and will do well. The kids are really excited that my mom is here and participating in their activties with them. More next week probably after the biopsy.
Tuesday, August 19, 2008
The Latest Update
I just don't know where the last week has gone!Between getting the kids ready for school, going to doctors appointments, calling the doctors office to make sure that all the forms are filled, last week just flew!
So, here is where we stand so far. I had an appointment with the neurosurgeon on Tuesday, the 12th. He did an exam and looked at my films with me again. He feels that it is what is know in the business as a low-grade probably benign tumor. The plan is to do a biopsy of it on September 2nd. The results of the biopsy will determine the treatment plan. It could possibly involve some chemo or radiation to shrink the tumor. Why cancer treatment if it is a benign tumor? This will help shrink the tumor and restore some of the function that I have lost. Unfortunately, because of where the tumor is located, he can't just take it out. That would mean that I would end up possibly partially paralyzed, unable to speak or think very well. That is just not what I am going for here!
I know many of you have asked about a second opinion. They have done everything to determine what is going on. The undeniable fact is that I have a big tumor in my brain. The second opinion will come after the biopsy when we have results to help determine the best plan of action.
The biopsy only requires an overnight hospital stay, so that's good.
As anyone can imagine this has been a tough time emotionally and physically draining. I am still incredulous that I actually have a brain tumor. The chances of developing a brain tumor in a person's lifetime is less than 1%. So, why me? Who did I piss off? I keep saying "A brain tumor, reallly??!!" We are finally at a point in our life where things are going well. We live in this wonderful community. We have friends. Our kids have friends. We're fixing up our house, living the American Dream and then BAM, it all turns around.
Most days, I accept it and I know that there is a reason God chose me for this path. Some days, I get really angry and sad. I have no doubt that I am going to beat this thing and be a better person for it.
The most trouble I am having is in accepting the fact that there are just certain things that I can't do or that take 10 times as long as they used to. When I was working, I usually had 3 projects I was working on at the same time, answering email, going to meetings, dealing with a small crisis, making decisions with no trouble. Now, a simple trip to the mall or a store is completely exhausting. I can't walk very far, because my leg just decides that it's not going to work. When I get into a store and it's crowded and there are lots of displays up, I can't remember what I was there for. I had a near meltdown in Wal-Mart the other day, because of all of the people, and what I neded wasn't easily accessible. We ended up leaving. Granted, it's not a far stretch to have a meltdown in Wal-Mart on a good day.
So now I find that I need to plan out my days and make sure that I take breaks in between all I am trying to do. I am not driving now either, so if I need something, I can't even get it myself. Keith has become my chauffeur, which he has been great about. This is very tough stuff for a type A such as myself.
I finally figured out on Friday, that I am so busy trying not to think about what is upcoming, that I have been staying way too busy. So now that the kids are back in school I decided that this week is about me dealing with this. So if phone calls go unreturned or emails aren't answered, it is just that I need time to lay around and do nothing and try to process all of the info that I have received lately.
That's all for now!
So, here is where we stand so far. I had an appointment with the neurosurgeon on Tuesday, the 12th. He did an exam and looked at my films with me again. He feels that it is what is know in the business as a low-grade probably benign tumor. The plan is to do a biopsy of it on September 2nd. The results of the biopsy will determine the treatment plan. It could possibly involve some chemo or radiation to shrink the tumor. Why cancer treatment if it is a benign tumor? This will help shrink the tumor and restore some of the function that I have lost. Unfortunately, because of where the tumor is located, he can't just take it out. That would mean that I would end up possibly partially paralyzed, unable to speak or think very well. That is just not what I am going for here!
I know many of you have asked about a second opinion. They have done everything to determine what is going on. The undeniable fact is that I have a big tumor in my brain. The second opinion will come after the biopsy when we have results to help determine the best plan of action.
The biopsy only requires an overnight hospital stay, so that's good.
As anyone can imagine this has been a tough time emotionally and physically draining. I am still incredulous that I actually have a brain tumor. The chances of developing a brain tumor in a person's lifetime is less than 1%. So, why me? Who did I piss off? I keep saying "A brain tumor, reallly??!!" We are finally at a point in our life where things are going well. We live in this wonderful community. We have friends. Our kids have friends. We're fixing up our house, living the American Dream and then BAM, it all turns around.
Most days, I accept it and I know that there is a reason God chose me for this path. Some days, I get really angry and sad. I have no doubt that I am going to beat this thing and be a better person for it.
The most trouble I am having is in accepting the fact that there are just certain things that I can't do or that take 10 times as long as they used to. When I was working, I usually had 3 projects I was working on at the same time, answering email, going to meetings, dealing with a small crisis, making decisions with no trouble. Now, a simple trip to the mall or a store is completely exhausting. I can't walk very far, because my leg just decides that it's not going to work. When I get into a store and it's crowded and there are lots of displays up, I can't remember what I was there for. I had a near meltdown in Wal-Mart the other day, because of all of the people, and what I neded wasn't easily accessible. We ended up leaving. Granted, it's not a far stretch to have a meltdown in Wal-Mart on a good day.
So now I find that I need to plan out my days and make sure that I take breaks in between all I am trying to do. I am not driving now either, so if I need something, I can't even get it myself. Keith has become my chauffeur, which he has been great about. This is very tough stuff for a type A such as myself.
I finally figured out on Friday, that I am so busy trying not to think about what is upcoming, that I have been staying way too busy. So now that the kids are back in school I decided that this week is about me dealing with this. So if phone calls go unreturned or emails aren't answered, it is just that I need time to lay around and do nothing and try to process all of the info that I have received lately.
That's all for now!
Monday, August 11, 2008
Mad Props
So I realize that up to this point I have been mostly regurgitating my story for all to read. We have now reached the point in the story called, waiting to for the next appointment. I have an appointment with the neurosurgeon and the neurologist today. Hopefully, by this afternoon I will have the date for my biopsy set and I can start making some plans. Normally, life runs pretty smoothly. I go to work every day, I have meetings scheduled for certain days and times, I deal with things as they come up. The kids have their activities that they participate in and Keith has his work schedule. Well, that's all out the window. Right now I am at the mercy of the neurosurgeon, an OR schedule and bed availablility in the ICU. Fortunately, work is not a concern right now and the kids summer activities are done, but there are some things coming up. The kids start school next Monday. For those of you who didn't realize how grown up my kids are, Allison starts 1st grade and Colin starts Kindergarten (ACK!!!). I really want to be there for his first day of school. I have become pretty involved with our PTA. We have a BBQ planned for Friday and a Kindergarten breakfast planned for the first day of school. I hate having to say, I'm not sure if I can make it, I might be in the hospital getting a slice of my brain taken out. A pretty lame excuse, I know!!! Anyway, I am very fortunate that Mel,my good friend and our PTA president is very understanding. Probably because I volunteered to bake the cookies for the BBQ, so she doesn't have to worry about it!!! Also, my poor mom has been on pins and needles trying to plan her trip out here to coincide with my hospitalization.
I digress from the reason for this post! Without certain people, I think I would have been be curled up on the couch in the fetal position for the last 3 weeks. So here are some mad props to the people that have helped me out:
Keith: He has been my rock since this whole thing started! I don't know what I would have done without him over the last few weeks. He has been at every appointment and test, he's held my hand, he's listen to me sob about cancelled doctor's appointments and bad news and more tests and not sleeping and not being able to do what I normally do. Always with the appropriate amount of sympathy and humor. I could go on and on, but i don't want to bore you with my gushing!
Allison & Colin: They are young and don't know exactly what is going on, but they know that there is something. We have told that that mommy has something going on in her brain that is making her leg hurt and that the doctor is trying to fix it. They know that I am on some medicine that makes me sad and grouchy (Steroids) and they accept it. Allison will randomly ask "Is your leg better today mommy?" Mostly, they are just happy that I am home. We read stories, watch movies, go swimming and go to the library. It's been fun getting to spend time with them and not have to think about rushing off to do something else. They are sweet and beautiful and I am so blessed to have them in my life!
Mom & Dad: Unfortunately, they have had to hear about all of this over the phone. Not the ideal situation. I know that my mom's first instinct was to jump on a plane and come out here when all of this started. However, she smartly realizes that I will need her more in the coming weeks, with school starting and being hospitalized and whatever else that is going to transpire. I can hear the worry in their voices, but they have done a good job of hiding the fear I know that they are feeling. I am grateful that my mom is willing to put her life on hold and fly out here, so that I know that the kids can have some semblance of a normal life. She will get to re-live the elementary school years on the fly. Take heart mom, my friends all know that you are coming and are willing to pitch in and provide any advice needed!
Kathleen: My boss, my friend!!!! She has been extremely supportive during this time. We have been working on the big hospital move for basically since I started this job and I have this happen 3 weeks before the move!!!! She has been there to support me through this roller coaster, listening and laughing/crying with me, even though I know that she has so much other stuff going on. It is so nice to have a boss that cares about my emotional well being as well as my professional well being.
Mel, Craig, Katie, Aidan, Elyssa: Melissa, et al. have hosted my kids on several occasions over the past few weeks, sometimes on short notice. I am so grateful to have a friend like her who takes such great care of my kids. Plus, our kids have a great time playing together! Melissa has also helped me tremendously by just being able to talk about kids, back to school, work or watch a movie. My saving grace has been organizing and planning and thinking about other things, so I have ben doing some PTA projects that help fill my time. Also, a shout out to Rick, the nanny for taking on extra charges! I feel so lucky to count you all in my circle of friends!!!!
My Co-workers: You guys have been great listeners and supporters and prayer sayers!!! I will never forget on Mock Patient Day that I was having such a hard time. You all surrounded me with your presence and helped me get through that day! You are all a part of my family. Even though I am not with you physically helping with the move, I am thinking about you. I know you are going to continue to make the NICU a very special place.
Ami, Amanda & Kaitlyn: Thanks for pitching in and watching the bambinos! Also, thanks for the yummy dinner!! It was so nice to not have to think about what we were going to make for dinner and that was the best rice and beans I ever had!!!!
Rhonda, Cade, Colton, Kaleb & Kevin: For offering support and encouragement and watching the kids on short notice, too!!!!
So, obviously, I could go on and on!!! Everyone has been so supportive and encouraging. I guess you don't realize what a strong support system you have, until something like this happens. I better go!!! I have an appointment today and will hopefully have some more answers.
I digress from the reason for this post! Without certain people, I think I would have been be curled up on the couch in the fetal position for the last 3 weeks. So here are some mad props to the people that have helped me out:
Keith: He has been my rock since this whole thing started! I don't know what I would have done without him over the last few weeks. He has been at every appointment and test, he's held my hand, he's listen to me sob about cancelled doctor's appointments and bad news and more tests and not sleeping and not being able to do what I normally do. Always with the appropriate amount of sympathy and humor. I could go on and on, but i don't want to bore you with my gushing!
Allison & Colin: They are young and don't know exactly what is going on, but they know that there is something. We have told that that mommy has something going on in her brain that is making her leg hurt and that the doctor is trying to fix it. They know that I am on some medicine that makes me sad and grouchy (Steroids) and they accept it. Allison will randomly ask "Is your leg better today mommy?" Mostly, they are just happy that I am home. We read stories, watch movies, go swimming and go to the library. It's been fun getting to spend time with them and not have to think about rushing off to do something else. They are sweet and beautiful and I am so blessed to have them in my life!
Mom & Dad: Unfortunately, they have had to hear about all of this over the phone. Not the ideal situation. I know that my mom's first instinct was to jump on a plane and come out here when all of this started. However, she smartly realizes that I will need her more in the coming weeks, with school starting and being hospitalized and whatever else that is going to transpire. I can hear the worry in their voices, but they have done a good job of hiding the fear I know that they are feeling. I am grateful that my mom is willing to put her life on hold and fly out here, so that I know that the kids can have some semblance of a normal life. She will get to re-live the elementary school years on the fly. Take heart mom, my friends all know that you are coming and are willing to pitch in and provide any advice needed!
Kathleen: My boss, my friend!!!! She has been extremely supportive during this time. We have been working on the big hospital move for basically since I started this job and I have this happen 3 weeks before the move!!!! She has been there to support me through this roller coaster, listening and laughing/crying with me, even though I know that she has so much other stuff going on. It is so nice to have a boss that cares about my emotional well being as well as my professional well being.
Mel, Craig, Katie, Aidan, Elyssa: Melissa, et al. have hosted my kids on several occasions over the past few weeks, sometimes on short notice. I am so grateful to have a friend like her who takes such great care of my kids. Plus, our kids have a great time playing together! Melissa has also helped me tremendously by just being able to talk about kids, back to school, work or watch a movie. My saving grace has been organizing and planning and thinking about other things, so I have ben doing some PTA projects that help fill my time. Also, a shout out to Rick, the nanny for taking on extra charges! I feel so lucky to count you all in my circle of friends!!!!
My Co-workers: You guys have been great listeners and supporters and prayer sayers!!! I will never forget on Mock Patient Day that I was having such a hard time. You all surrounded me with your presence and helped me get through that day! You are all a part of my family. Even though I am not with you physically helping with the move, I am thinking about you. I know you are going to continue to make the NICU a very special place.
Ami, Amanda & Kaitlyn: Thanks for pitching in and watching the bambinos! Also, thanks for the yummy dinner!! It was so nice to not have to think about what we were going to make for dinner and that was the best rice and beans I ever had!!!!
Rhonda, Cade, Colton, Kaleb & Kevin: For offering support and encouragement and watching the kids on short notice, too!!!!
So, obviously, I could go on and on!!! Everyone has been so supportive and encouraging. I guess you don't realize what a strong support system you have, until something like this happens. I better go!!! I have an appointment today and will hopefully have some more answers.
Friday, August 8, 2008
And So It Continues...
My neurologist sent me for an MRI of my head, and the rest of my spine. I am not that claustrophobic, but spending 2 hours in an MRI machine is enough to drive anyone a little batty. I got through it though. When the tech finished scanning my head and took me out of the scanner to change the equipment, she informed me that I would be having a CAT scan of my head before I left. Of course, she couldn't tell me why, but I knew at that point they must have found something in my head. That was on a Monday and my appointment wasn't until Thursday. Talk about time standing still!
SOOO finally Thursday rolled around and I got the news. He took me out into the hall where my films were posted and showed me the results. Suffice to say that i don't read MRI's, but I knew that s***t wasn't right. At that point he started talking Multiple Sclerosis, but there was also some type of cyst in my head near the sclerotic region. At this point I started to loose it. All I could see was this abnormal picture that was supposed to be my brain and the doctor was talking to us. It was surreal.. all I could here was "wah wah wah." About the time I almost passed out in Keith's arms, here took me back into the exam room. When I was able to get myself a little more together, we started talking about what it all meant. Both he and the radiologist felt that I had something called "tumefactive MS. " Normally MS presents with symptoms such as double vision or blurred vision. Also, the is usually more that one lesion on the brain, which I didn't have. the cyst is also typical of tumefactive MS, but it could also be a brain tumor. Like the god little nurse that I am, I went home and researched MS on-line, because I was not going to let some stupid disease stop me! I had a whole list of questions when I went to see Dr. B. the next day.The next step was ANOTHER MRI, the very next day. This time, they did something called a spectroscopy. Basically, they measured the chemistry of the thing in my head, while I was in the MRI scanner. After my MRI I had to go see Dr. B again. He wanted to put me on steroids to decrease the swelling in my brain and gave me something to help me sleep. This would probably be the time to mention that we are moving into a brand new hospital on August 16th, so life is absolutely crazy and insane. Dr. B. put a stop to that. He took me out of work because he thought the stress was adversely effecting my health. It turns out to be for the best, because my stress level has gone down, you know, as much as that's possible while your waiting for a diagnosis of brain tumor versus chronic illness!!
I realize that I may sound a little flip about this whole thing, but the only way to get through this is with a little humor and a lot of tears!! Keith has been my rock through the whole thing, telling we "we are going to get through this, no mater what." I'm sorry if anyone is offended by gallows humor, but if your in the medical profession, it's the only was to get through a crisis. Medical professionals are made to help other people through their crises, we're not good at managing our own!
The next step in this process was to meet with the neurosurgeon, to schedule a brain biopsy. Yes that's right, they actually drill a hole in your head and take a piece of this thing in your head to get a definitive diagnosis. That appointment was supposed to be yesterday, but I got a call that Dr. S was called away to an emergency and had to cancel, could I come in next Friday August 15th, instead? Are you kidding me? Put my life on hold for another week??!!! Of course being the polite, understanding patient I am I said yes and promptly started balling my head off. Once again, Keith was left to put the pieces together.
After a crying jag that lastedmore than a few minutes, I pulled myself together and called Dr. B's nurse. She and Dr. B. took pity on me and we went to the office to see him that afternoon. He was very apologetic about my appointment being cancelled, which wasn't his fault anyway. I told him that I get surgical emergencies, I just didn't think it was fair to have to wait another 8 days to even schedule the biopsy. My god, couldn't they bump somebody else who didn't possibly have a brain tumor???!!! It's not like I had an ingrown toenail that could wait a little while. Dr. B, being the awesome doc that he is, got me an appointment on Tuesday (8/12) with the neurosurgeon. Just spending time talking to him was enough to calm me down.
We also talked about the spectroscopy. Apparently, the chemistry of it makes it look more like a brain tumor than MS. He suspects that this tumor could have been growing slowly inside me for 20 years!!! This is actually a good thing. The tumors that are worse are the ones that show up suddenly. So, next Tuesday I should know when my biopsy will be scheduled and can start making some plans. I still can't believe that this is happening to me, it feels like some kind of dream. More Later
SOOO finally Thursday rolled around and I got the news. He took me out into the hall where my films were posted and showed me the results. Suffice to say that i don't read MRI's, but I knew that s***t wasn't right. At that point he started talking Multiple Sclerosis, but there was also some type of cyst in my head near the sclerotic region. At this point I started to loose it. All I could see was this abnormal picture that was supposed to be my brain and the doctor was talking to us. It was surreal.. all I could here was "wah wah wah." About the time I almost passed out in Keith's arms, here took me back into the exam room. When I was able to get myself a little more together, we started talking about what it all meant. Both he and the radiologist felt that I had something called "tumefactive MS. " Normally MS presents with symptoms such as double vision or blurred vision. Also, the is usually more that one lesion on the brain, which I didn't have. the cyst is also typical of tumefactive MS, but it could also be a brain tumor. Like the god little nurse that I am, I went home and researched MS on-line, because I was not going to let some stupid disease stop me! I had a whole list of questions when I went to see Dr. B. the next day.The next step was ANOTHER MRI, the very next day. This time, they did something called a spectroscopy. Basically, they measured the chemistry of the thing in my head, while I was in the MRI scanner. After my MRI I had to go see Dr. B again. He wanted to put me on steroids to decrease the swelling in my brain and gave me something to help me sleep. This would probably be the time to mention that we are moving into a brand new hospital on August 16th, so life is absolutely crazy and insane. Dr. B. put a stop to that. He took me out of work because he thought the stress was adversely effecting my health. It turns out to be for the best, because my stress level has gone down, you know, as much as that's possible while your waiting for a diagnosis of brain tumor versus chronic illness!!
I realize that I may sound a little flip about this whole thing, but the only way to get through this is with a little humor and a lot of tears!! Keith has been my rock through the whole thing, telling we "we are going to get through this, no mater what." I'm sorry if anyone is offended by gallows humor, but if your in the medical profession, it's the only was to get through a crisis. Medical professionals are made to help other people through their crises, we're not good at managing our own!
The next step in this process was to meet with the neurosurgeon, to schedule a brain biopsy. Yes that's right, they actually drill a hole in your head and take a piece of this thing in your head to get a definitive diagnosis. That appointment was supposed to be yesterday, but I got a call that Dr. S was called away to an emergency and had to cancel, could I come in next Friday August 15th, instead? Are you kidding me? Put my life on hold for another week??!!! Of course being the polite, understanding patient I am I said yes and promptly started balling my head off. Once again, Keith was left to put the pieces together.
After a crying jag that lastedmore than a few minutes, I pulled myself together and called Dr. B's nurse. She and Dr. B. took pity on me and we went to the office to see him that afternoon. He was very apologetic about my appointment being cancelled, which wasn't his fault anyway. I told him that I get surgical emergencies, I just didn't think it was fair to have to wait another 8 days to even schedule the biopsy. My god, couldn't they bump somebody else who didn't possibly have a brain tumor???!!! It's not like I had an ingrown toenail that could wait a little while. Dr. B, being the awesome doc that he is, got me an appointment on Tuesday (8/12) with the neurosurgeon. Just spending time talking to him was enough to calm me down.
We also talked about the spectroscopy. Apparently, the chemistry of it makes it look more like a brain tumor than MS. He suspects that this tumor could have been growing slowly inside me for 20 years!!! This is actually a good thing. The tumors that are worse are the ones that show up suddenly. So, next Tuesday I should know when my biopsy will be scheduled and can start making some plans. I still can't believe that this is happening to me, it feels like some kind of dream. More Later
The Story So Far...
August 8, 2008
It all started out simply enough. I was having some weaknes in my right leg several months ago. I noticed at the gym when I was working out that my right leg wasn't as strong as my left leg. No big deal. One leg is usually stronger than the other. However, as time went on, I started to notice that I was tripping a lot and almost broke my right toe four or five times. My balance also seemed to be off. Then people started asking me if I hurt my leg, because I was limping. Crazy, right???!!!
I went to my family doctor, you know, when I finally made the time 8 months later,thinking that I was having a problem with my knee. She did a few tests in the office and thought the most likely was a slipped disc. She was definitely concerned and ordered an MRI. If the MRI didn't show anything, she was going to refer me to a neurologist.
I had an MRI on Sunday July 20th. On the 22nd of July, she called with the results. It was not my back that was causing the weakness and she was referring me to a neurologist. It's always a red flag when the don't even let you make your own appointment!! The call came in late that day, I had an appointment with the neurologist 2 days later.
The neurologist did a bunch of tests in the office. We found out that I have terrible balance, I can't hop on mt right foot, and I can't tap my right toe quickly. "how long have you not ben able to do these things?" he asked. I don't know, has anyone else in their 30's or 40's recently attempted to hop on 1 foot, I thought to myself.
So he was thinking that I either had Multiple Sclerosis, Venous Malformation or a Brain Tumor...OMG!!!!
It all started out simply enough. I was having some weaknes in my right leg several months ago. I noticed at the gym when I was working out that my right leg wasn't as strong as my left leg. No big deal. One leg is usually stronger than the other. However, as time went on, I started to notice that I was tripping a lot and almost broke my right toe four or five times. My balance also seemed to be off. Then people started asking me if I hurt my leg, because I was limping. Crazy, right???!!!
I went to my family doctor, you know, when I finally made the time 8 months later,thinking that I was having a problem with my knee. She did a few tests in the office and thought the most likely was a slipped disc. She was definitely concerned and ordered an MRI. If the MRI didn't show anything, she was going to refer me to a neurologist.
I had an MRI on Sunday July 20th. On the 22nd of July, she called with the results. It was not my back that was causing the weakness and she was referring me to a neurologist. It's always a red flag when the don't even let you make your own appointment!! The call came in late that day, I had an appointment with the neurologist 2 days later.
The neurologist did a bunch of tests in the office. We found out that I have terrible balance, I can't hop on mt right foot, and I can't tap my right toe quickly. "how long have you not ben able to do these things?" he asked. I don't know, has anyone else in their 30's or 40's recently attempted to hop on 1 foot, I thought to myself.
So he was thinking that I either had Multiple Sclerosis, Venous Malformation or a Brain Tumor...OMG!!!!
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