Happy Holidays

It has been a few months since my last post. I was not planning to post, but i was told that i needed to post something even if it was just a simple greeting. i doubt there are many people hanging on any word that i say, but i will will put something up. so, here it is.

as for me physically, tehre is not much to report. i still have tingling. it is erratic and not as bad as it was. i have been getting some mild headaches, but nothing too severe. the worst thing has been my intestines. i am unable to take medication that helped calm my intestines due to my tumor. i have to be very strategic when i am out. i have to know where the bathrooms are at all times. it could be much worse. i am blessed.

i have to say that i am not sad that this year is coming to a close. it was probably the worst year of my life. there were so many changes that took place. it is my hope that this new year is a much better one. it would be difficult to beet 2008. i wish everyone Happy Holidays! Stay warm and positive.

Happy Labor Day Weekend

today i spent most of the day walking the fair. i did not go last year. it was nice to be back. i logged numerous hours eating, smelling and people watching. the fair is a fabulous place to people watch. such a wonderful mixture of people. although going to the fair is fun, it does conjure up memories of my first job as a dishwasher at the pancake house. i should have been the cook, but the job was stolen from me by my best friend Wade. :) i digress, i ate too much fried food. i have to say that pork chop on a stick is delicious! my feet and body are terribly dirty and sore. i am going to chill the rest of the night because my extremities are retaining water. :)

on to the medical stuff. i got the results back from my CT scan. they were negative. Dr. Parry did say that i may still have or could get sarcoidosis for it may not show up on the scan. i guess that is good, but i am still experiencing tingling. they do not know what is going on. the more i spend with doctors the more i see that they are just making educated guesses based on experience. oh well. they will continue to monitor me. i am supposed to check in if anything changes.

i hope you all have a happy labor day

More Tests and Monitoring

well, there is a bit to tell you all. on Tuesday, i played basketball for the first time in 4 months. that was interesting. not that i had skills before the surgery, but whatever i did have has gone along with my cardio. i am so out of shape. biking just does not get it done. well, the rate of speed that i bike is not getting it done. my shot was terrible and my dribbling was off. i have to say i had a great time. i am looking forward to next week

yesterday, i had my appointment with Dr. Parry. his nursing staff were entertaining and funny. Dr. Parry is a kind gentleman and is an international authority in MS and neuropathy. it sounded like he was from Australia or New Zealand, but the accent was so slight. he was exceptionally thorough. i did dexterity tests, hand eye tests, cogitative tests and walking tests. he spent over an hour with me. after all of that, he does not believe i have neuropathy or MS. he wants to check to see if i have Sarcoidosis. Sarcoidosis is a disease of unknown origin that cause the formation of nodules/lesions in the lungs, liver salivary glands and lymph glands. my uncle died of complications associated with sarcoidosis. i had a CT scan today (which was quite easy and quick). although it may not show up on the CT scan, it does not mean that i do not have it. so, he will continue to monitor me. the monitoring will somewhat mirror what they are doing with the tumor. i am so glad that i do not have to do a spinal tap. oh the simple pleasures. :)

Have a wonderful weekend. i will let you know if my hoopin' skills return. stay tuned......

OOOOOPS!

i thought that i was supposed to meet with Dr. Perry on Friday of last week. boy, was i wrong. i had the fortune of having another MRI done instead. my visit with Dr. Perry is this Thursday.

i have to say that i do not mind having a MRI. i find it exceptionally relaxing, minus the dye being injected into my veins and the clicking and banging noise. i was in the machine for approximately 45 minutes. waiting to be seen and waiting for the images to be printed took at least an hour.

i am looking forward to my visit with Dr. Perry. i truly hope he will be able to shed light on what is going on. we shall see

Under the Weather

my crohn's has raised its ugly head again. i have been home the last few days struggling for normalcy. i have had a nausea, severe headache and a slight fever. i have never had this wonderful trifecta. i have a doctors appointment.we will see if they can let me know what is going on. i highly doubt it. also, i have an appointment with my new neurologist tomorrow. i hope he can tell me what is going on with the tingling.we shall see.

Sorry for the Delay

i want to apologize for neglecting my blog. i do not know what to tell people. i plan to update teh blog every time i meet with a phsician. i am sure that will be every few months or so. if something else happens around my health, i plan to post it. i have to admit that i am feeling much better. i still have the tingling, but i feel about 89% myself. i plan to play basketball next week. that will be intersting. we shall see

i finally have an appointment to see Dr. Perry. i will see him on July 31st. he is teh head of the neurology department at the university of minnesota. he specializes in ms and neuropathy (sp). now i am working on getting all of my MRI photos to give to him. at least i have my entire file from Dr. Dahlquist.

i am also attempting to schedule my MRI follow up. that has been quite intersting. they were supposed to have that scheduled a long time ago. i called and they said someone would call me back, but they have not. i need to call them again today to see when it will be. crazy!

Stuck @ the Doctors

Last week was a week full of doctor's appointments. i finally met with the cardiologist. i also had an appointment with my neurologist. i am growing tired of visiting them.

the cardiologist told me nothing i did not already know. i new i had a slow heart rate, which he confirmed. it was interesting seeing the rhythm of my heart beat and when it spiked and dropped. it did drop a few times or skipped a beat once or twice during the night. it was cool seeing how it would go up if i exerted myself.

Friday, i spent almost the entire afternoon in the doctor's office. he was running 2 hours late! At least i ran into an old family friend and was able to get caught up with her while we both waited to see him. once i got into the back room, he made me wait for an additional hour. i understand people running late, but his bedside manner is terrible. he is a brilliant guy and does care for me and his other patients, but he does not know how to convey information in a warm way. he stated that he is concerned that i am still having numbness. he ordered additional blood tests. when i have my next MRI, he wants them to take photos of my lumbar. he believes i may have a swollen/inflamed spinal cord. that is difficult to see on a MRI. they took an image of that before, but he said that it might not have shown up and he has seen that happen before. he is worried that it might be ms, myelitis or neuropathy. he is going to refer me to the head of neurology at the University of Minnesota to continue my care. i will see him whenever i can get an appointment. He does not want me to use the drugs that my GI doctor wanted me to take. that is a relief for i did not want to take them. i would have to have a lot of blood drawn and it might adversely affect my liver. i do not need any other problems

Many Thanks!

i want to thank all of the individuals that attended the gathering on Saturday. it was a phenomenal event, one that i will cherish for the rest of my life.

as i was driving over tot he hall on Saturday, i was thinking to myself that there would be just a handful of Kicker's. to my surprise, it was packed. the event was surreal. i had to pinch myself for i did not believe it to be real. one never knows how much one is loved until you get sick. i truly felt the love. what was the most amazing aspect of the event was the generosity of individuals that i did not know until Saturday. when i have doubts about the world, i will look back to Saturday night and i know that there is hope left for this world. Thank you to all that planned the event, attended and dontated items and time. i am a lucky man

More Appointments

i trust that you all had a wonderfully long weekend. it went by too quickly for my liking.

last week was quite interesting. returning to work was more challenging than i thought. my head begins to hurt after lunch. i am able to cope with it.

i was able to speak with my GI doctor. i have an appointment with him next Tuesday. he has some options for me. i have no idea what that means, but i will find out. i plan to speak with my neurologist this week. at this rate i should have all of my medical stuff in order. i just need to get my body in order. :)

Stupid Heart Monitor

yesterday i was fitted with the stupid heart monitor. it truly gets in the way. luckily the nodes are fixed fairly strongly to my chest. the monitor has gone flying when i take off my shirts. at least i only have 5 more hours to wear it. i cannot wait to take a shower. i cannot get the monitor wet. i am dying to bathe. spraying cologne on and taking sponge baths is for the birds. i am dying to take a long hot shower. if you see me today, beware of my funk. :)

i received my blood test results. everything was negative. i do have slightly elevated LDL. i better exercise more. it is tough when you have limited energy and cannot play the ports that give you pleasure. oh well. i better bike more. i do not know what to think since all of the tests came back negative. now what? i cannot wait to see my neurologist to see how he will determine what the cause of my tingling is. the tingling does not occur often. i still want to know what is going on.

Back to Work

today was my first day back in seven weeks. time has flown by and much has changed since my last moments in the office. it was wonderful to get back to see my staff. i did not enjoy coming back to over a thousand emails and countless phone messages. i will not get into the crises that need to be addressed. i spent much of my time speaking with my colleagues and hearing what is and has been going on. i missed a lot. the staff did a wonderful job addressing situations that arose while i was out. i am lucky to have them. being in a work environment was a lot more taxing then i remember. it ended up giving me a headache. that being said, it was good to be back

i also had a doctors appointment. i had a TB test and they had to see if i had a reaction to it. obviously, i did not. that was a wasted test and wasted my time. tomorrow i go in to be fitted with another holter heart monitor. i hope it is only for a 24 hour period and not longer. we shall see. i still do not know why they insist that i do this again. i have a slow heart rate. get over it. oh well. what is another co-pay

it was the last Friday before i return to work. of course, it is finally getting nice out. seven weeks have flown by. i have to say i am feeling much better. i am a bit apprehensive about returning to work and being in meetings and such. it will be a radical transition.

i spent much of the morning with my primary care physician. she checked me up, down and all around. she was supposed to have received information from my neurologist but she had not. she inquired with the records department, but there was nothing. i really cannot believe that they did not send anything to them. they were very good in getting information to my GI and ophthalmologist. at least this time i brought all of the letters and documentation i received from all of the doctors. together we pieced what type of blood work i should have done. i had 8 test tubes of blood drawn, tetanus shot and a TB scratch. needless to say, i am tired of needles. i should have the results next week and i am able to access them online. i have to say that it is pretty slick even though i have no idea what some of the tests are or what is good or bad.

it is my hope that all of the mother's out there had a wonderful day. i spent most of the day with my mother.

my intestines are still not very good. i have a couple of appointments with the doctor this week. i hope that i have a greater understanding of what is going on. we shall see. i just got off the phone with the heart doctor and he wants me to wear a heart monitor again and see him shortly there after. i was not expecting that. i figured since i had not heard form them in quite sometime, that i was free and clear on that one. i guess it could be to check me out again since i do have such a low heart rate. that is all speculation

Oh So Tired

i was unable to get a wink of sleep last night. i was up all night going to the bathroom because of my stupid intestines. my GI nurse neglects to return my phone calls. unfortunately, the tingling in my arms came back with a vengeance. my neck is exceptionally stiff. i feel like i have taken a step backwards.

needless to say, i am exhausted. it is my hope that i will be able to nap today. we shall see

The Many Looks of Patrick

i awoke to an extremely stiff neck and a headache. i decided that i needed a change. i shaved some of my facial hair. i figured i have not posted any pictures in quite some time. here they are.

Health Care Cronicles

today was another day attempting to understand how anything in health care gets done. after learning that i have to track down my various doctors to have blood work done, i left messages with my gastroenterologist and neurologist. my neurologist got back to me (i wonder if it is because i used to cut his grass as a kid). he was dumbfounded that my GI doctor did not call the labs in. he agreed to send all of his records to my primary care doctor for my labs next week. my GI doctor has not returned my call. he is usually pretty good at getting back to me, but not of late. when i spoke with his nurse last week they told me that my primary care doctor needed to call it in. if i was not on top of all this, nothing would get done. i hope to speak with my GI doctor tomorrow in order for him to send his files on me to my primary care physician. we shall see.

Wasted Trip

my stomach and intestines are still not doing that well, but they are much better then last week. i am glad i have my doctor's appointment.

i had an appointment with my primary care physician. i needed some blood work done and also to find a new internal medicine doctor. due to changes in my insurance, i had to find a new doctor. i have only had to primary care physicians in my life. the clinics and individuals i wanted to be seen by were not accepting new patients for quite some time. i called a clinic near my home and got an appointment today. my appointment today is with a female physician. i have never had a female primary doctor. i have to admit i was a bit nervous about seeing one. not that i think that she would not be good. it has all to do with the comfort factor of telling her about any male issues i might be having and having. after seeing her, my apprehensiveness was ill founded. she was delightful. however, i need to return next week to have the blood work done. she did not have the proper information of what tests to order. i have to contact my neurologist to have them relay to her what i need done. i thought this was going to be easy, but obviously it is not.

On the Road Again

my range of motion is improving each day. nevertheless, my neck is still stiff. it feels as if there is not enough skin back there to allow me to move properly. i know the muscles are tight and not used to moving. i do experience some sharp pains toward the top portion of the incision. i cannot complain. my headaches have not been severe in quite some time.

although my head has been okay, my stomach and intestines have been giving me problems. the last few days, it has been my stomach that has given me the most problems. i am not sure if it is something i ate, but if that is the case, it should have gone away by now. i have an appointment with my primary care physician to have my blood work done. i will ask her what on earth is going on if it is still bothering me.

i have started to drive a bit on the side roads. beware drivers! :) even with a stiff neck, i am better them most of the terrible Minnesota drivers. i had no problem adjusting back to driving. everything is a bit more labored, but it feels so nice to have some semblance of control. i felt like a sixteen your old after passing the driver's examination. freedom of movement without the curfew. the potholes do not feel good on the neck, but it is nice to be able to run to the store if i want to.

Pain in the Neck

i do not have too much to report. the last few days my neck is getting more stiff. i attribute that to attempting to move it more. there is some swelling at the base of my neck. i have been icing, but i need to do it with more frequency. the incision has also been a bit tender of late. i also attribute that to the muscles under the scar. that is a very uneducated guess.

my intestines have not been cooperating as much as i would like. i will be going in for some additional blood tests ordered by my neurologist and gastroenterologist. i hope the tests will shed some light on my numbness and my Crohns.

i have begun to receive some summery of services/benefits from my stint in the hospital and various doctor's appointments. health care is exceptionally expensive. i am so lucky to have health care. i cannot even imagine having the procedures i did and not having insurance to cushion the blow. i truly hope that the politicians will universalize health care. any major illness and it will ruin a persons life.

How the Time Goes By

it has been a few days since i last wrote. snow, high winds and doctors visits have come and gone. well, the flurries may not have gone. i met with my surgeon last week. let me rephrase that. i met with his nurse practitioner and he came in to admire his stitching work. she was late to work because of the weather. in the waiting room there were exceptionally old magazines. finally, she walked into the room. i had never seen this person before. i was expecting to see Dr. Kennedy. :) i should have known better.

with her southern drawl she asked me a myriad of questions about my symptoms prior to the surgery and what has gone on for the month since i had the procedure. i asked her numerous questions about exercise, returning to work, driving, how much longer will i have headaches and what the severity of them might be, to name just a few. she removed some of the stitches that were sticking out of my neck. she rubbed her hand forcefully over my scar. i have to say it was a bit unnerving. my neck had never had such forceful contact. it is numb and so it gave me a strange sensation that made me quiver. she was impressed with Dr. Kennedy's work, as am i. she stated that i need to wait 6 months to participate in an contact sports. i did not hear that. i am going to go with Dr. Kennedy's original suggestion to wait 3 months to start playing ball again. she indicated that i may start driving if my range of motion with my neck allows me to do that, but only on side streets. she informed me that i may go back to work in three weeks. i am excited yet there is much trepidation returning. the trepidation is around the volume of emails and my ability to be able to be lively in meetings for 8 hours a day. i am sure i will return to form fairly quickly.

after answering all of my questions she went to grab Dr. Kennedy. he came in and looked at the scar. he was impressed. he said that i have to have an MRI in three months and if that has no sign of growth, have another in three additional months. if that one looks good, they will have another one in six months. if that one is negative, i will have them yearly. i should not have to see him again unless thee tumor grows quickly. he also wanted me to set up an appointment to see a neurological oncologist just in case. this physician will take a look at me and might get me into some studies, but more it was to get to know him and if the tumor recurs, he can set up some treatment options with chemo or radiation. all in all, it went well.

If anyone really cares, i apologize for the tardiness of my post

it has been a few days since my last post. i did not want to bore you with the mundane aspects of my life. i have been enjoying the weather. i have been sitting on the porch resting and reading. i wish i could do some planting and cleaning of my yard. it needs it big time. i finished the book Three Cups of Tea. i highly recommend it. i have started the book entitled Miraculous Health. the thunderstorm was fabulous. i truly enjoy storms. it most certainly satisfied.

i was tiring of some of my facial hair. it was itching a bit. i cut a portion of it. you can see that i am looking quite rough. :) it is challenging taking pictures of yourself. i will post one of my scar tomorrow.

i have not been able to sleep well due to my intestines. they have not cooperated as much as i would like with the medication. i hope it will respond soon so i do not have to take steroids. we shall see. i see my surgeon tomorrow. i am anxiously awaiting that meeting. i do not know what to expect from the visit. nevertheless, i hope he will let me know when i can drive and when i am able to return to work. we shall see. i will keep you posted.

For your Amusement

i wanted to give you a glimpse into my new look. i have a side shot, but i cannot get it to rotate properly. here it is. as you all know, i usually keep my hair short and easy to maintain. my situation has allowed me the opportunity to explore my ability or lack there of to grow facial hair. not many of you knew i still had the ability to grow hair on top of my head as well. i still have it. having a beard is not as bad as i thought, but it does not feel like me. i will continue to grow it for a bit longer. i find it rather amusing and it takes minimal effort to maintain. i do need to obtain the proper clippers to make it even easier. my head clippers and razor do not allow me the ability to properly manage my look. we will see how long i keep my hair. i am going to wait until i see my entire scar. some of the steri strips are coming off. once i see it in its entirety i will decide if i should go back to short an easy or attempt to hide the scare with hair. i know my hair will not grow there, but we shall see if i should give myself a fade. enjoy the pic!

i had a headache for most of the evening and morning. it has subsided a bit. i thought i was out from under the headache spell, but i guess it will be something i will be coping with for some time to come.

i watched a wonderful movie today. i encourage you all to watch it. it is called Sharkwater. it is about saving sharks and thus our ecosystem. i do not want to get on my preachy horse about the environment and politics. we are a world in peril and we have nobody to blame but ourselves. we need to be better stewards of ourselves, the land, water and air to assure future generations can thrive. so, i will just encourage you to view this and other documentaries. it is a short documentary but especially powerful. i guess i have always had a love for the ocean and sharks. too bad my experience with Mr. Miller in biology in high school ruined my chances of becoming a marine biologist. i guess i am still harboring a grudge because he did not assist Tony, my friend and lab partner, in dissecting our fetal pig or answering any of our other questions he had about biology. we were both destined to a life outside of science. :)

Overtired

again, i was unable to sleep well due to my intestines. i was able to sleep for a few hours this morning. it looks like everything is back to normal on the sleeping front. i cannot remember the last time i slept though the night before the surgery. it has been years. the inflammatory and pain killers allowed me some solid sleep. i guess those days are over.

i dropped off my stool specimen. i hope to have results by the end of the week. i left a message for my neurologist to see where and when he has scheduled my blood work. i hope he will get back to me soon.

Piecing Healthcare Together

i slept terribly last night. it had nothing to do with headaches. it had everything to do with my crohn's. it is back and in full force. i was up every hour for most of the night. i guess if it is not one thing it is another. this is something i am used to and can tolerate.

my gastroenterologist called me back. we had a wonderful conversation. he is a gentle soul. he agreed to speak with my neurologist in order to integrate treatment. i am sure i will have to set up an appointment in the near future. he prescribed Asacol for my intestines. i have taken it in the past and i do not believe it works well. i suppose i will actually listen to my physicians this time. this may be a bit too much information, but i will tell it anyway. i have to give some stool samples to him as well.

the weather is improving. it was absolutely gorgeous out today. it is about time. spring has sprung!

First Doctor's Appointment After Surgery

i have hot water! the repair guy came early evening and fixed the water heater. the thermostat was the problem. so, i am clean and so are all the dishes that were piling in the sink. what a relief.

i just returned from my appointment with the neurologist. his bedside manner is not the best, but he is good. due to the fact that the tingling in my arms is not constant, he is not that too concerned. he wants to continue to monitor me. he does not know why i am still tingling. finding the tumor most likely had nothing to do with the tingling. he is glad that we were able to take care of that. he is concerned with the fragmentation of care that i have received. i need to contact my GI doctor and ask for all of the blood work i have given over the last 8 years. also, i need to have many additional blood tests done to rule out some other possibilities such as: Vitamin d and B12 deficiencies, MS, Lyme's disease, TB, HLA-B27, FANA, ACE, RPR FTA and CBC. i have no idea what some of these acronyms mean, but i need to be tested for them. i believe they are auto immune type diseases. i have to see him again in six weeks.

Back on Track

i finished the book that i was reading. it felt really good. it took longer then i thought, but it is a milestone. i am now reading Three Cups of Tea by Greg Mortenson and David Oliver Relin. i have a few other books in the queue. i cannot wait

last night i decided not take pain medicine to see if i could make it through the night. bad decision. it took me forever to fall asleep. my head was throbbing but i still did not take any medication. i eventually feel asleep. i am a bit tired. i hope to be able to nap today

it is sad that i am still without hot water. the home plus service people came out at 3:50. they gave me a window between from 8 am to 4. he was here for two hours. he had to call in reinforcements. they informed me that i need a new thermostat. it is three months old and i need a new thrmostat? that is ridiculous! the part will be couriered over sometime today. once i receive it, i have to call home service plus over to install the part. i hope the part comes early. i really need to shower.

Still a Day Late

I awoke yesterday with a mean headache. i continued to sleep and when i woke up, the headache had subsided. i got up and read and relaxed. as always, i ate a ton of food. i have a voracious appetite. if there is food in my general vicinity, i devour it. although i have tons of fruit and other healthy items, i tend to gravitate toward the chocolate and other sweets. i wish i could do something athletic even though i do not have the energy or stamina to do anything remotely athletic.

i did go out grocery shopping yesterday. it was my first shopping foray since the surgery. it was nice to get out. i wish i could have walked around outside, but it is a little too cold for that. i hope to get out for a walk today.

last night, my water heater pilot light went out. i was unable to restart it. i just purchased a new water heater in January. they could not come out last night even though i have home service plus. they said they would come today between 8 am and 4 pm. they have not arrived yet. i am sure they will come close to 4. needless to say i am a bit ripe not being able to shower in anything besides cold water. as a result of the water situation, i will be sitting on the couch. i guess i would be doing that anyways. :)

I Cannot Get Caught Up

i realize that my blog is stagnating. i guess my life is just not that interesting. i will plod on and give you updates. i wish i had more excitement to share with you. this is all i got. :)

yesterday i awoke to a brutal headache. i slept in and relaxed. thankfully by late afternoon, my head was feeling better. i took a shower and washed my hair. it felt so wonderful lathering my head up. i am able to get the incision wet. the incision feels numb. my neck is extremely stiff. i need to increase my range of motion by doing simple head movements. i hope that sensation goes away. we shall see. i also attempted to read a book. low and behold i was able to read a couple of chapters of Come on People by Bill Cosby and Alvin Poussaint. it felt wonderful to actually read more then a few page article. it did take its toll. by the bedtime, my headache returned but it was worth it.

i awoke this morning to a healthy amount of slush on the ground. i cannot believe the weather. i was expecting to be able to sit outside and read. that most certainly is not going to happen anytime soon. i feel good this morning. too bad the weather will prevent me from taking a walk. i was hoping to walk the dog this morning. it has been a few days since i have taken a walk. i need to get more exercise.

Still a Day Behind

yesterday was a lazy day. i was incredibly tired. i slept well. actually, i have been sleeping fairly well excluding this past evening. getting out of bed was a chore. i was greeted with some not so good work news. it made me want to stay in bed. as the day went on, i came to terms with it. today is a new day.

i want to thank everyone again for all of the support. it means so much. thank you. i am so blessed.

i have scheduled an appointment with my neurologist for Tuesday of next week. i hope Dr. Dahlquist will be able to shed light on the tingling in my arms and legs. i spoke with his nurse and he was livid that my surgeon did not keep him in the loop about my surgery.

A Day Behind

i apologize for not posting anything yesterday. i did escape the confines of my house. i went over to my brother's house and hung out with my niece. she is doing much better. other then that i slept most of the day. it was so dreary and i was tired as all get up. it was a mix of just being plain old tired and having a headache that you want to escape and sleep was the logical solution. at least the headache is not like the melting helmet. that was brutal. the one i have currently reminds me of someone pulling the two hemispheres of the brain apart. i am still tired. i could sleep all day. we shall see what i end up doing today

my Holter monitor was just dropped off. a physician will take a look at the data. if they find something startling, they will let me know. if not, they will contact me in a week or so. i truly believe they will find nothing. my low heart rate is natural and was reduced a bit further because of the manipulation of the Medulla.

i still have tingling in my arms and fingers, but it is intermittent. i did have some tingling in my legs and toes yesterday. that was a bit surprising. we shall see if that continues. my wound is not weeping anymore. that is great. i cannot wait to be able to wash the wound. maybe that will happen this week. i am not going to hold my breath.

Not Much To Report

it was a non eventful evening. i had and still have a headache. the Holter monitor did not prevent me from sleeping. i did not sleep through the night, but it was much better then the melting helmet sensation from the night before.

i just removed the Holter monitor. it is nice not having anything connected to my chest. i am still tired and am winded easily. all in all, i am a lucky person.

i expect to log in some serious hours watching basketball tonight. my appetite is ferocious. i cannot stop eating. i want to blame it on the medication, but i think it is just the way i am. :)

i hope everyone is enjoying this beautiful day. i want to live vicariously through you all.

OUCH!

i had the most intense headache i have ever experienced last night. i still do not believe i can accurately describe the pain. it felt as if i had a helmet of pain on and it was vibrating or melting pain into my brain. it was the strangest sensation i have ever experienced. i took some pain medication, but it just displaced it. the pain moved from encompassing my entire head to different positions of my brain. my brain felt as if it was a piece of clay that an artist was attempting to remove the air bubbles out of before shaping it. i was trying to find a position in which i could find some relief, but i could not find one. needless to say, it was a difficult evening.

i finally forced myself to get out of bed to get ready to go to the St. Paul Heart Clinic. i have not been very steady on my feet today. i get light headed and dizzy easy. i went to the clinic and they attached this monitor with electrodes to my chest. i have to wear this for 24 hours and document all the various activities i do or do not do during that period of time. it will be fairly simple documentation consisting of nap, eating and taking pain medications.

The Headache Strikes Back

my day was marred with a brutal headache. i have to say that i was expecting to have much more pain then i have had. i cannot complain. i am not sure if i attribute my headache to my attempt to read articles longer then a page or that it was just time for me to experience pain. it made me rest virtually all day. it prevented me from sleeping particularly well.

i do feel good this morning. it looks absolutely gorgeous outside. i hope to venture a few steps outside today. we shall see how that goes. i have this nice new hat/cover up that i wish to sport to protect my wound and to hide my nappy hair. i will take a picture of that as well. it has some cute butterflies on the back as well. it also conceals my hematoma from the frame that was screwed into my head. the swelling has gone down considerably. i have some bruising above my left eye and on the side of my head , arms and on my shoulders. other then that, i am fairly bruise free. i have yet to actually see my incision. it is still covered by steri strips. i do know it is not weeping as much as it did. the swelling is going down as well.

i am still experiencing tingling, but it is not as constant as it was the other day. i believe that to be a good sign. tomorrow i go in to the St. Paul Heart Clinic to get set up with the Holter heart monitor. i will have to wear that for a few days to get some readings. it looks like i will be able to enjoy the sun and warmth that we are supposed to experience tomorrow. who knows how long that will last since it looks like we might get some more snow and rain this weekend. what is up with this place?

i am sitting here writing and eating some fruit and i am disappointed with my inability to open my mouth as wide as i am accustomed. i am sure my mother likes that i am no longer able to open up and shove huge portions of food into my mouth. i am a bit a disappointed in having to show eating restraint. it is my hope that my tongue, jaw and mouth will return to normal. if not, i will be a much more refined eater with no taste buds.

On the Catwalk

Here are some photos. it took me a while to get one of them off my phone. i am also having difficulty placing them where i want them to go on the blog. i am still a blogging neophyte. i hope these images are not too disturbing or risque. the second photo was taken prior to my surgery. they had hooked me up to a few IVs and set up the electrodes on my head to monitor Brain function. i felt like i had a ponytail. it might be inspiration for a future hairstyle. at the time this was taken the anesthesia was beginning to kick in. a few minutes after this picture was taken, i remember the nurses asking my parents to say goodbye. things began to get blurry and i do not remember a thing until the following day. my tongue and mouth are still not the same since they intubated me.

the first photo was taken yesterday. i was about to take a shower. i just wanted you all to know that i still have a sharp sense of style with my bonnet. i am unable to wash my hair or get my neck wet for 5 more days. needless to say, my hair is a bit ripe. too bad i do not have the ability to grow a proper beard. my face looks ratty. i will be calling on all of you to assist me in deciding what type of hairstyle to have moving forward. i will work on some possible options.

i did not sleep very well last night. my mind was racing about silly stuff. i am still experiencing tingling, but not to the extent that i was yesterday. i take that to be a good sign.

D'OH! D'OH! D'OH!

in the words of one of my favorite cartoon characters Homer Simpson, D'OH! it was not a good night before i went to bed and while i was in bed. my niece, Grazina, who is 9 months old was admitted to the hospital with the flu. she cannot hold down food or fluids and has lost weight that she can ill afford to loose. poor thing.

in addition, i found out that Toby Rapson's father Ralph Rapson, the famous architect passed. my thoughts and prayers go out to the Rapson family.

to finish off the trifecta, while i was staring at the ceiling trying to fall asleep, the tingling in my arms and hands returned last night. this was the first time i felt tingling since the surgery. at least it was not in my legs and feet as well. we will see what is going on there after i see my surgeon. needless to say, it was not a good evening. at least in my case i hope that it was just how i was positioned while sleeping. time will tell.

at least it is sunny outside and the snow will be melting away soon. i cannot wait to go outside and take a walk. there are some photos that i need to post that will lighten the mood. i will work on getting those up soon. i believe you all will be amused

I Have Been Sprung

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

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!

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:

• 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

Wednesday:

• First memory: woke up at 3am to Edwin (RN) giving me a sponge bath

Thursday:

• 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

Friday:

• 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.

13 Hours and Counting...

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.

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!

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.

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.