I have been released! i apologize for not getting that information out to you earlier, but my wonderful scribe was not able to get things up on the blog. my attention span is not that long. today is the first time i felt good enough to get things up on the blog. i promise to keep it up do date. i guess since i am home, it does not matter as much. thank you all for the kind words, the calls, the text messages, the visits, the flowers and all the love you all have sent. i am truly blessed!
they let me go late Saturday night from the hospital. i have to say i was quite surprised. my heart rate is still quite slow. i have to have a monitor on to make sure it does not go too low. my heart rate has always been fairly low, but they believe that due to the surgery and the manipulation of my medulla that it has slowed it even more. it feels so good to be out of the hospital.
before i left i had to do a battery of cognitive tests. i guess i passed, but i seriously have to question my logic and how i came up with the answers. some of them reminded me of Montessori school. i had to complete puzzles, mazes, word associations, matching, word problems (i forgot how much i despise word problems), and an assortment of math problems and last but not least listing all of the animals starting with the letter 'm' i could come up with in a minute. it was a truly humbling experience. i feel exceptionally slow. like i said, i passed. i have always been a bit slow, but this is ridiculous.
i also had the pleasure of making a meal to show that i am self-sufficient. my options were limited so i made an cheese and ham omelet with toast. it would not have earned me a stop spot on Top Chef, but it looked good. i also had to walk stairs, do laps around the Cardio unit and simulate taking a shower. i did take my first real shower. i have yet to take one today (like you care).
they sent me home without giving me many bandages or tape. luckily i know people. i have to say i was taken care of exceptionally well at United. i have to say the ICU nurses were the best, but all of them were sweet. the physicians were kind. i am so glad that i do not need to be poked and prodded every hour.
i have not had as much pain as i imagined i would. i try to hold off taking any pain medication until i go to bed. this may sound strange. the pain seems to help bring clarity and keeps me grounded. i still have to take anti-inflammatory pills.
what is up with the weather? i cannot believe my eyes. thank you everyone for all of your thoughts and prayers
Monday, March 31, 2008
Friday, March 28, 2008
Slight Set Back
At 1 am this morning I was moved down 4 floors due to a slow heart rate. The nurse and doctor on the neuro floor were concerned this was due to my brain swelling. My doctor does not appear to be concerned and believes everything to be fine. Needless to say, my new room is smaller and doesn't have the great view my previous room had.
Today I am going through OT. I had my first short term memory test of the day and got 29/30 questions correct.
...I can't remember which one I got wrong :-)
Throughout the day I will have more OT life skills tests.
Will keep you posted!
Today I am going through OT. I had my first short term memory test of the day and got 29/30 questions correct.
...I can't remember which one I got wrong :-)
Throughout the day I will have more OT life skills tests.
Will keep you posted!
Post-Surgery Bliss...
The last few days have been very difficult. I was swollen beyond recognition from surgery and have had catheters and other extruding plastics, which made me feel like I was in a scene from the Matrix.
Results: Dr Kennedy resected 80% of the tumor because he determined he wasn't getting any closer until he got the pathology back and he believed the tumor to be sub ependymoma (non-cancerous---best possible tumor a person can have). Fortunately I had the best surgeon in MN, the results came back today and I have a sub ependymoma (non-cancerous). There is no need for me to have radiation at this point. I will however have consistent monitoring for the rest of my life---MRIs. This is the best case scenario and very encouraging. Now all I have to do is rest and heal for the next few months.
Below is snapshot of the last few days:
Tuesday:
Thank you to those of you who have sent flowers---they have certainly brightened my room. Not taking a shower for 3 days takes it toll and the flowers have aided in keeping my room smelling fragrant.
I will be recuperating for the next month or so and I look forward to responding to emails, returning phone calls, and updating my blog once I feel up to it...my dexterity is not quite up to speed yet.
I will post pictures in the near future. I would have had some great photos, but my brother Van prevented them from being taken :-)
Thank you again to everyone for your kind, thoughtful words, and continued support. I am truly blessed to have you in my life.
Results: Dr Kennedy resected 80% of the tumor because he determined he wasn't getting any closer until he got the pathology back and he believed the tumor to be sub ependymoma (non-cancerous---best possible tumor a person can have). Fortunately I had the best surgeon in MN, the results came back today and I have a sub ependymoma (non-cancerous). There is no need for me to have radiation at this point. I will however have consistent monitoring for the rest of my life---MRIs. This is the best case scenario and very encouraging. Now all I have to do is rest and heal for the next few months.
Below is snapshot of the last few days:
Tuesday:
- 10 hour surgery, laying flat on my stomach
- 6 inch scar on the back of my head/neck. I believe they glued my skull back together
- First memory: woke up at 3am to Edwin (RN) giving me a sponge bath
- I was moved from ICU to my own room on the neuro floor
- Catheter Free
- IV free
- Growing a mean beard
- Wearing leg stockings to simulate leg motion since I have been inactive for 3 days.
- Experienced many firsts:
- First solid food meal consisting of breakfast (scrambled eggs and muffin) lunch (turkey sandwich, gravy, and zucchini) dinner (beef stroganoff, carrots, bread, and chocolate chip cookies). Never until today did I know how much I like solid food!
- Took my first bowel movement
- Stood up, walked, and sat in a chair
- Brushed my teeth
- First Shirley Temple
- Will begin Physical Therapy and OT
Thank you to those of you who have sent flowers---they have certainly brightened my room. Not taking a shower for 3 days takes it toll and the flowers have aided in keeping my room smelling fragrant.
I will be recuperating for the next month or so and I look forward to responding to emails, returning phone calls, and updating my blog once I feel up to it...my dexterity is not quite up to speed yet.
I will post pictures in the near future. I would have had some great photos, but my brother Van prevented them from being taken :-)
Thank you again to everyone for your kind, thoughtful words, and continued support. I am truly blessed to have you in my life.
Monday, March 24, 2008
13 Some Odd Hours To Go
thank you to all that have attempted to call me. i wish that i had time to speak to everyone. Please know that i appreciate your calls and will attempt to get back to you after the surgery. i have to say that i am blessed with the most amazing friends. thank you!
What a day and it is still not over. i attempted to take care of everything in the office before my MRI. i know i missed somethings, but i am glad that i left everything to my fabulous staff.
i had my final MRI before the surgery. it was rather comical. the dressing rooms were full. they put me behind this curtain. there were no gowns to put on so the MRI technician told me to strip down and get in. little did i know she was being facetious. nakedness never bothered me. as i disrobed, she quickly threw me some scrubs. another technician came in and shaved small holes in what little hair i have. he put these markers on my head (see photos above) they look like the pads you put on a wart or a corn. i feel like a cartoon character, but i cannot place him if he was member of the Superfriends legion of doom or someone from the Jetsons. maybe someone can help me out with that. then again, i could be totally off. it would not be the first time. these markers are used to help them map my brain. i really want to check what is missing in those images. :) i then entered the machine. i find those contraptions to be quite relaxing minus the banging and knocking. as i walk out of the hospital, i am getting numerous double takes and it was not because of my eyes. needless to say, i immediately went to my car and put on a cap.
i want to thank you all again for your kind words. they mean the world to me. as i said before, i am lucky to have so many incredible people in my life. thank you!
i was asked to give the hospital information. i am at United Hospital located on Smith Ave N., St. Paul, MN 55102-2389. their phone number is 651-241-8256.
What a day and it is still not over. i attempted to take care of everything in the office before my MRI. i know i missed somethings, but i am glad that i left everything to my fabulous staff.
i had my final MRI before the surgery. it was rather comical. the dressing rooms were full. they put me behind this curtain. there were no gowns to put on so the MRI technician told me to strip down and get in. little did i know she was being facetious. nakedness never bothered me. as i disrobed, she quickly threw me some scrubs. another technician came in and shaved small holes in what little hair i have. he put these markers on my head (see photos above) they look like the pads you put on a wart or a corn. i feel like a cartoon character, but i cannot place him if he was member of the Superfriends legion of doom or someone from the Jetsons. maybe someone can help me out with that. then again, i could be totally off. it would not be the first time. these markers are used to help them map my brain. i really want to check what is missing in those images. :) i then entered the machine. i find those contraptions to be quite relaxing minus the banging and knocking. as i walk out of the hospital, i am getting numerous double takes and it was not because of my eyes. needless to say, i immediately went to my car and put on a cap.
i want to thank you all again for your kind words. they mean the world to me. as i said before, i am lucky to have so many incredible people in my life. thank you!
i was asked to give the hospital information. i am at United Hospital located on Smith Ave N., St. Paul, MN 55102-2389. their phone number is 651-241-8256.
Saturday, March 22, 2008
The Waiting Game
i have to thank all of you for your prompt posts. i deeply appreciate the kind and warm words. they most certainly help.
i figured you all would take a look at the blog wondering why on earth i would create a blog and how did he ever gain the knowledge to create one. it most certainly will not be a high tech blog, but i will do my best to make it entertaining. i will post some scar photos. needless to say, my aspirations of being a top model have been dashed. :)
last night was a tough night for me. i had an excruciating headache that was accompanied by tingling in my arms and legs; eye pain (i have Iritis, which is inflammation of the iris); and the resurgence/flair up of my Crohn's. as you can see, i am the poster child of good health. :) i had difficulty sitting still. so, i went for a long drive/loop around lakes Calhoun, Cedar, Nokomis, Harriet and Isle. it conjured up some pleasant and not so pleasant memories of high school. it did give me time to reflect about my about my life. i believe i have gained better insight into myself and in regards to what i am currently experiencing. as a result, i am exhausted both mentally and physically. before last night, i believed i was handling all of this in stride, but after last night, i am not so sure. i just want to have the operation and get this all over with.
thank god for march madness to help aid me in my search for sanity. although they are painful to watch and i did not pick them to go much further, Go Badgers!
i figured you all would take a look at the blog wondering why on earth i would create a blog and how did he ever gain the knowledge to create one. it most certainly will not be a high tech blog, but i will do my best to make it entertaining. i will post some scar photos. needless to say, my aspirations of being a top model have been dashed. :)
last night was a tough night for me. i had an excruciating headache that was accompanied by tingling in my arms and legs; eye pain (i have Iritis, which is inflammation of the iris); and the resurgence/flair up of my Crohn's. as you can see, i am the poster child of good health. :) i had difficulty sitting still. so, i went for a long drive/loop around lakes Calhoun, Cedar, Nokomis, Harriet and Isle. it conjured up some pleasant and not so pleasant memories of high school. it did give me time to reflect about my about my life. i believe i have gained better insight into myself and in regards to what i am currently experiencing. as a result, i am exhausted both mentally and physically. before last night, i believed i was handling all of this in stride, but after last night, i am not so sure. i just want to have the operation and get this all over with.
thank god for march madness to help aid me in my search for sanity. although they are painful to watch and i did not pick them to go much further, Go Badgers!
Wednesday, March 19, 2008
Crani Prep
i had my dry run at the surgery unit today. they took numerous pints of blood, asked the questions regarding my medical history for the umpteenth time, chest x-ray and gained a deeper glimpse of what to expect during and after surgery. the nurses i have encountered have been exceptionally kind. all of them have raved about the neurosurgeon performing my operation, Dr. Jerone Kennedy. Although he is supposed to be the best brain surgeon in Minnesota, i have to admit i am a bit anxious about the surgery. what i am dreading most is the thought of not being able to do ANYTHING athletic for three months! that is uncharted territory for the kid. i can only imagine how irritable i will be. i feel sorry for anyone that will be spending any amount of extended time with me.
The Skinny
i guess i should have explained why i am posting a blog. i was diagnosed last tuesday with an ependymoma. Here is a brief explanation of what an ependymoma is.
Within the brain and spinal cord, there are nerve cells and also cells that support and protect the nerve cells. The supporting cells are called glial cells. A tumour of these cells is known as a glioma.
Ependymomas are a rare type of glioma. They develop from the ependymal cells which line the ventricles (fluid-filled spaces in the brain) and from the central canal of the spinal cord. They can be found in any part of the brain or spine, and are particularly common in the cerebellum (see diagram) in children. They are the second most common spinal cord tumour.
Tumours at the base of the brain, in an area called the posterior fossa, are more common in children. this is what i have. i knew i was still a child.
i have my procedure on tuesday, March 25th at 8:30 a.m. at United Hospital in St. Paul. i will be in ICU for one to two days and in the hospital for a week.
Tuesday, March 18, 2008
Damn Health Care System
This morning i went to have my pre-op physical only to be told that i scheduled my physical to a provider outside of my network and would cost me $1000 out of pocket. I wish they would have informed me of this when I gave them my insurance information and prior to my drive out to Arden Hills. oh well. luckily, i was able to find a no alternate location to get my physical done.
Subscribe to:
Posts (Atom)
