I went to lunch with a friend the other day. When paying the bill, she said she'd need help calculating the tip; she generally left 20%. I asked the total, which was $17. I said "$3.40", to which she stared at me, wondering how I could calculate it so quickly. I simply explained "double the bill and then remove a zero, and you're set!"
She just stared at me and stated "wouldn't you know that the person who just had a brain tumor removed is faster than I am with math". Later she shared the story with another friend, saying, "I will never be smarter than Sally, even after a brain tumor". . . I thought it was pretty funny (and not true about being smarter).
(Marti - You can also calculate by taking 10% of the total and doubling. . . Ha ha)
I've had several good days now - FYI. Yippee. . .
Monday, December 29, 2008
Tuesday, December 23, 2008
OK, enough rest. . . I can't do that ALL the time
They said at Mayo that the best physical therapy is just living normal life. So, I have now decided that my physical therapy will be shopping and eating out.
I noticed that my friends and family are just waiting for me to be ready for stuff, and then they pounce. When I mentioned a couple weeks ago that I would consider going to Meijer, Kayla said "How about Thursday?", and we went. I told Margie, Nancy P. and Nancy D. that I would be open to going out to lunch, they said "How about Friday" and we went.
So this week, I joined my parents on Monday, and Marti on Tuesday. Just the activity of walking to the car, walking into the restaurant, talking to the waitresses and adjusting to the various noises in the restaurant are providing great physical therapy!! As well as a reminder of how much further I have to go - Think of the feeling of accomplishment that I'll have over time when I don't get dropped at the door and do my own driving. . .ha ha. . . And what a lot of the therapy I'll get when I hit the mall someday!! (AFTER the holidays)
Yesterday I walked all the way around the block (One Michigan block is about 6+ Princeton blocks). Margie came over to walk the dogs and I wanted to go along, so I bundled up and off we went into the snow. Margie had to handle all three dogs (Gina, Paulo and her dog Chester) and asked me how far - and I said around the block. AND I made it!! When we got back, Margie asked me how far I had made it prior to that walk. I said "the property line". The look on her face was priceless. She had no idea and immediately felt guilty about taking me so far. Here's my logic: I could have walked to the end of the street and back. However, that was the same distance as walking the parallel street. So I was only adding the distance of the perpendicular streets, which admittedly did stretch the distance. It felt great. I slept very well last night.
MERRY CHRISTMAS
I noticed that my friends and family are just waiting for me to be ready for stuff, and then they pounce. When I mentioned a couple weeks ago that I would consider going to Meijer, Kayla said "How about Thursday?", and we went. I told Margie, Nancy P. and Nancy D. that I would be open to going out to lunch, they said "How about Friday" and we went.
So this week, I joined my parents on Monday, and Marti on Tuesday. Just the activity of walking to the car, walking into the restaurant, talking to the waitresses and adjusting to the various noises in the restaurant are providing great physical therapy!! As well as a reminder of how much further I have to go - Think of the feeling of accomplishment that I'll have over time when I don't get dropped at the door and do my own driving. . .ha ha. . . And what a lot of the therapy I'll get when I hit the mall someday!! (AFTER the holidays)
Yesterday I walked all the way around the block (One Michigan block is about 6+ Princeton blocks). Margie came over to walk the dogs and I wanted to go along, so I bundled up and off we went into the snow. Margie had to handle all three dogs (Gina, Paulo and her dog Chester) and asked me how far - and I said around the block. AND I made it!! When we got back, Margie asked me how far I had made it prior to that walk. I said "the property line". The look on her face was priceless. She had no idea and immediately felt guilty about taking me so far. Here's my logic: I could have walked to the end of the street and back. However, that was the same distance as walking the parallel street. So I was only adding the distance of the perpendicular streets, which admittedly did stretch the distance. It felt great. I slept very well last night.
MERRY CHRISTMAS
Definition of REST (From Snowy Michigan)
It occurred to me, after being told to "rest" alot, that maybe I didn't really know the definition. S0, here it is. I think is a good word to review occasionally. I'm still working on the implementation of "rest" . . . but trying and succeeding a bit.
REST: noun
1: repose , sleep ; specifically : a bodily state characterized by minimal functional and metabolic activities
1: repose , sleep ; specifically : a bodily state characterized by minimal functional and metabolic activities
2 a: freedom from activity or labor b: a state of motionlessness or inactivity c: the repose of death
3: a place for resting or lodging
4: peace of mind or spirit
5 a (1): a rhythmic silence in music (2): a character representing such a silence b: a brief pause in reading
6: something used for support
— at rest
1: resting or reposing especially in sleep or death
3: free of anxieties
(ref: Merriam-Webster Dictionary Online) http://www.merriam-webster.com/dictionary/rest
I return to Mayo for my Three Month Checkup! on February 17. I will make an effort to REST until then and am dedicated to getting as good a report at that point as I can (BTEP Milestone?) . One Milestone will be to see an MRI that is tumor free. I am feeling better all the time and instead of my energy going into "existence" my energy is now going toward building strength and trying to "rest".
Status check: It has now been 7 weeks since surgery.
Walk: I now walk pretty good. Still slow, but straighter and more confident. I have managed to not fall :)
Head pain: My head hurts less now (headache instead of frozen with pain).
Hearing in one ear: I find that living with hearing loss is mixed. In a quiet setting I'm fine. But the more background noise, the harder it is to distinguish what I want to hear.
Face: the muscles seem to be slowly strengthening, but there is a long way to go.
Chocolate: Yes! It tastes good again.
Attitude: I am grateful to be here and I do love life. It did sink in at some point that this really was a BRAIN tumor and that I'm lucky to be alive and have my intellect intact. The physical stuff is just a project that provides great opportunity for improvement.
HAPPY HOLIDAYS!!!
Thursday, December 18, 2008
Change Tools or Find New Ones to Compensate. . .
1. The Straw Story
Earlier I promised to share the straw story, which I think is pretty funny. I hope I can tell it right so you see the humor. . .
In the hospital, it seemed that nurses were constantly in my face with more pills to take. I was laying in bed, and struggling to drink from my flat and motionless position. Pills kept getting caught on my tongue. Drinking always ended up in a bath. And sitting made my head hurt. So I used straws. I was laying down, heavily drugged, struggling with my facial muscles. But I perservered and managed to drink using a straw.
Day Four - I was confident that everything was under control. But all morning, it was a major struggle every time I tried to use a straw. The nurses were encouraging and patient, "no rush. . .", etc. because it was obviously me.
Finally, I said "bring me a new straw, maybe this one has a hole". They "humored" me and brought a new straw. No problem! It worked great. So all morning I had been frustrated, thinking I was going backwards. . . and I just needed a new straw!
2. The Milk Jug
I am still resetting my vestiblar system, as my balance was messed up by the surgery. I have made great progress and just need to walk carefully as I continue to re-calibrate. When I walk, sometimes I randomly veer to the left. So one day Kayla and I stopped at the grocery store. We had two bags and a jug of milk. So when we headed out to the car, Kayla grabbed the bags and made a suggestion. Since the jug is "legal weight" (i.e., under my 10 pound limit), how about if I carry the jug of milk. Her suggestion was that if I carried it with my right hand, maybe it would balance me and I wouldn't veer left randomly. Well, it worked. We are still laughing at the uniqueness of the "balance tool".
Lesson for the day "Sometimes you need to get a new tool or find a new use for an old one"
Earlier I promised to share the straw story, which I think is pretty funny. I hope I can tell it right so you see the humor. . .
In the hospital, it seemed that nurses were constantly in my face with more pills to take. I was laying in bed, and struggling to drink from my flat and motionless position. Pills kept getting caught on my tongue. Drinking always ended up in a bath. And sitting made my head hurt. So I used straws. I was laying down, heavily drugged, struggling with my facial muscles. But I perservered and managed to drink using a straw.
Day Four - I was confident that everything was under control. But all morning, it was a major struggle every time I tried to use a straw. The nurses were encouraging and patient, "no rush. . .", etc. because it was obviously me.
Finally, I said "bring me a new straw, maybe this one has a hole". They "humored" me and brought a new straw. No problem! It worked great. So all morning I had been frustrated, thinking I was going backwards. . . and I just needed a new straw!
2. The Milk Jug
I am still resetting my vestiblar system, as my balance was messed up by the surgery. I have made great progress and just need to walk carefully as I continue to re-calibrate. When I walk, sometimes I randomly veer to the left. So one day Kayla and I stopped at the grocery store. We had two bags and a jug of milk. So when we headed out to the car, Kayla grabbed the bags and made a suggestion. Since the jug is "legal weight" (i.e., under my 10 pound limit), how about if I carry the jug of milk. Her suggestion was that if I carried it with my right hand, maybe it would balance me and I wouldn't veer left randomly. Well, it worked. We are still laughing at the uniqueness of the "balance tool".
Lesson for the day "Sometimes you need to get a new tool or find a new use for an old one"
Monday, December 15, 2008
My omission
It was pointed out that I have pictures of Gina and Paulo (in the right column), but none of Gabby. Here she is, in all her glory:
Sunday, December 14, 2008
Life Lessons from the PETS
I have been home for quite some time now and have been observing the pet world. I would like to share what I've learned. Please note that all quotations are from the pets. (Sorry Kendra, I know that embarrasses you, but it is the most effective approach)
1) Live for the moment - "what's up? Wanna lay down for awhile? ok", followed by nestling into the blankets as if for a lifetime. "What? You moved? Let me jump up just in case you wanted to go somewhere - the next room counts as going somewhere"
2) Life can change in an instant, be optimistic - "Let me outside! Really, it is important! Maybe it was snowing 5 minutes ago, but it MIGHT be spring now. Really, I promise! If you get up off the couch and walk over here I'll go outside THIS time."
3) Sometimes you need a thick skin (From Gabby) - "I'm here! Let me lay on top of you with my whiskers in your face. OH, sorry, I know you didn't MEAN to push me off the bed. Here I am again in your face"."
4) Sometimes our goals differ - We think we are on the same page but we aren't. We think we see things the same but we don't:
Gina: "Let me out - look at that", while jumping excitedly at the door
1) Live for the moment - "what's up? Wanna lay down for awhile? ok", followed by nestling into the blankets as if for a lifetime. "What? You moved? Let me jump up just in case you wanted to go somewhere - the next room counts as going somewhere"
2) Life can change in an instant, be optimistic - "Let me outside! Really, it is important! Maybe it was snowing 5 minutes ago, but it MIGHT be spring now. Really, I promise! If you get up off the couch and walk over here I'll go outside THIS time."
3) Sometimes you need a thick skin (From Gabby) - "I'm here! Let me lay on top of you with my whiskers in your face. OH, sorry, I know you didn't MEAN to push me off the bed. Here I am again in your face"."
4) Sometimes our goals differ - We think we are on the same page but we aren't. We think we see things the same but we don't:
Gina: "Let me out - look at that", while jumping excitedly at the door
Paulo: "Just a minute, let me get out from under this blanket. Oh yea, I see it. Let me out too!!"
After both fitting out the door at the same time, they both run in different directions. . .
5) Unconditional Love - When I got home from Mayo, Gina jumped into my lap and quivered for about 20 minutes. She didn't care how bad I was feeling, she just wanted to be with me.
6) Sometimes there's nothing like a groan - Sometimes Paulo just groans. Well, since my surgery, I have groaned a lot! I have to admit that it relieves pain and stress. Sometimes Paulo and I groan back and forth, which also provides comic relief!!
7) Sometimes things can serve two purposes - Gina constantly reminds me that I need to do "Right Hand" therapy. . . by petting her nonstop! It seems rather self serving if you ask me.
Friday, December 12, 2008
But without BAD days, would we appreciate Good days?
I have had a good week. I am feeling much better!!
Monday, December 8, 2008
Good days and yes, BAD days
Sometimes I feel like I update this blog through rose-tinted glasses. I tend to be a people pleaser and more concerned about the reader's comfort than sharing the tough parts of this path I am on. I feel that I sometimes make things sound so positive that people will be lining up for brain tumors! Well, my advice is DON'T. While I want you to celebrate the great progress with me, I realize that I also have to share some of my struggles.
Sunday was one of those bad days that I expected. I had a great few days last week and celebrated getting out. I had a pretty uneventful day Saturday. But wow, Sunday hit like a brick wall (or as one of my colleagues and I learned from a client, like a brick ON MY head - now I know what he meant!!). I got up and felt ok with no headache. However, one hit at 10 am. I could barely get to the couch, as I had to stop every step for brain pain. I took a nap, assuming relief would follow. I woke up at 11:30 to even more pain. I knew that food would help, but the kitchen seemed 5 miles away. Fortunately, I had the phone with me and called my parents, who live 2 miles away. Yes, it had to be bad for me to call for help!!
Two minutes later, (well, maybe 5) they were there springing into action. Dad warmed up some soup for me (that I couldn't eat) and Mom found some pain medication for me. I didn't improve (I will spare details here) but I felt comforted by their presence and support. Mom spent the night. Even at 51 years old, there's nothing like the love of parents and being fussed over.
Today, Monday, I was very tired and weak, but back on track. And tomorrow will bring another day. Where this path will lead I do not know, but I do know that I still need all your love, support, and prayers. So keep them coming!! And I'll try to keep the funny stuff coming. . .as well as the real. (Like the broken straw story. . maybe I'll share that knee-slapper next time)
Sunday was one of those bad days that I expected. I had a great few days last week and celebrated getting out. I had a pretty uneventful day Saturday. But wow, Sunday hit like a brick wall (or as one of my colleagues and I learned from a client, like a brick ON MY head - now I know what he meant!!). I got up and felt ok with no headache. However, one hit at 10 am. I could barely get to the couch, as I had to stop every step for brain pain. I took a nap, assuming relief would follow. I woke up at 11:30 to even more pain. I knew that food would help, but the kitchen seemed 5 miles away. Fortunately, I had the phone with me and called my parents, who live 2 miles away. Yes, it had to be bad for me to call for help!!
Two minutes later, (well, maybe 5) they were there springing into action. Dad warmed up some soup for me (that I couldn't eat) and Mom found some pain medication for me. I didn't improve (I will spare details here) but I felt comforted by their presence and support. Mom spent the night. Even at 51 years old, there's nothing like the love of parents and being fussed over.
Today, Monday, I was very tired and weak, but back on track. And tomorrow will bring another day. Where this path will lead I do not know, but I do know that I still need all your love, support, and prayers. So keep them coming!! And I'll try to keep the funny stuff coming. . .as well as the real. (Like the broken straw story. . maybe I'll share that knee-slapper next time)
Friday, December 5, 2008
Meijer - One Stop Shopping
When I was in Princeton, I missed Meijer. There is no other store like it. It is huge and has EVERYTHING. (kind of like a WalMart superstore). So it was appropriate to be my first Shopping experience since before surgery!!
Kayla drove, and I got one of those silly electric wheelchairs to conserve energy. It was a miracle that I didn't run her over, but I eventually got the hang of it. If you have ever been in a Meijer you will understand that I would have been exhausted trying to walk the store. I felt good and we had fun picking up miscellaneous Christmas gifts. (Have to get Kendra's box sent to France early!)
To follow we actually went to a restaurant for lunch - Bilbos - Pizza and salad - yummy.
Then I had a rest in the car while Kayla went to Petco, but I felt good enough to walk through Hardings as our last stop to pick up some frozen foods.
I think this qualifies as a BTEP milestone!!! I actually had fun. . .
Kayla drove, and I got one of those silly electric wheelchairs to conserve energy. It was a miracle that I didn't run her over, but I eventually got the hang of it. If you have ever been in a Meijer you will understand that I would have been exhausted trying to walk the store. I felt good and we had fun picking up miscellaneous Christmas gifts. (Have to get Kendra's box sent to France early!)
To follow we actually went to a restaurant for lunch - Bilbos - Pizza and salad - yummy.
Then I had a rest in the car while Kayla went to Petco, but I felt good enough to walk through Hardings as our last stop to pick up some frozen foods.
I think this qualifies as a BTEP milestone!!! I actually had fun. . .
Tuesday, December 2, 2008
One Month Down. . .
Technically, yesterday was 4 weeks and tomorrow (3rd) is one month. So let's split the difference. I'm continuing to see steady (but slow) improvement. Nothing exciting to report. My head hurts less, and I can now get up from a chair and walk further before I have to stop for what I call a few seconds of brain freeze, or waiting for my brain to catch up (a throbbing of my brain with a full spasm of my head and neck muscles). I am no longer using a cane to get around but still have poor balance. I was expecting more improvement after 1 month, but am adjusting to my status and timeline. We'll get there when we get there!! Right?
Details: Some people have asked me questions about the surgery experience itself, which was fascinating. Here's a summary of what I remember/know.
I had no drugs prior to surgery. They put the brain surgeon's initials on my head (right side) with magic marker to ensure that they got the correct side. They had me on a gurney and wheeled me into the operating room. I was strangely calm. As we approached the operating room, I knew we were getting close when I saw my surgeon in the hall, and sinks outside each room for scrubbing. The nurse told me that the operating room was dedicated to acoustic neuromas (scary that so many people go through this). I heard a lot of instruments clinking. The nurse told me that she would be massaging my side every hour. The anesthesiologist put my first IV in. One of the interns was in the background to watch and he did a great job of staying out of the way! A commanding voice was in the background telling people how he wanted the operating room arranged ("move that over here, move that over there"). I was reassured by his confidence until he said "because if we need to resuscitate we need this area clear". I told the nurse that many people were praying for the entire surgical team all day. Then someone said something about a nap. I remember looking at the bright lights thinking "I have to remember this". Then I must have been out because I remember nothing until I woke up that night.
After I was asleep the surgical team had a field day. Here's what I know about:
IVs - They started a second IV in my right hand. And they started "arterial" IVs in each wrist. So I woke up with four IVs. I think the arterial IV was used to measure my blood gasses?
Blood pressure cuff - put on my right arm and it was automatic all day.
Calf compression - I had put on compression socks that morning, but they added something to each leg to inflate and deflate automatically to keep the blood flowing. I was stuck with them for several days.
Catheter - Self explanatory.
Monitors - they wired up my face and neck. The brain stem was stimulated regularly through the day to see if the signal was still flowing. This deteriorated through the day, so they knew before I woke up that my face would be weak (the term for not moving) and that my right hearing was gone. (However, they reassured me and my family that the facial nerves are intact and will heal in time.) The monitors were gone when I woke up.
Bolted head - they bolted my head into a vice-like frame to ensure that nothing moved. That was gone when I woke up, but it left three small spots that have since healed.
When I woke up, I still had the blood pressure cuff, 4 IVs, oxygen in my nose, and a clip on my finger. The first sensation that I had was extreme back pain, followed by my left side hurting and feeling hard as a rock, and eventually my head aching. I had to lay on one side motionless all day during surgery, thus the side and back pain. And the rest is history.
Details: Some people have asked me questions about the surgery experience itself, which was fascinating. Here's a summary of what I remember/know.
I had no drugs prior to surgery. They put the brain surgeon's initials on my head (right side) with magic marker to ensure that they got the correct side. They had me on a gurney and wheeled me into the operating room. I was strangely calm. As we approached the operating room, I knew we were getting close when I saw my surgeon in the hall, and sinks outside each room for scrubbing. The nurse told me that the operating room was dedicated to acoustic neuromas (scary that so many people go through this). I heard a lot of instruments clinking. The nurse told me that she would be massaging my side every hour. The anesthesiologist put my first IV in. One of the interns was in the background to watch and he did a great job of staying out of the way! A commanding voice was in the background telling people how he wanted the operating room arranged ("move that over here, move that over there"). I was reassured by his confidence until he said "because if we need to resuscitate we need this area clear". I told the nurse that many people were praying for the entire surgical team all day. Then someone said something about a nap. I remember looking at the bright lights thinking "I have to remember this". Then I must have been out because I remember nothing until I woke up that night.
After I was asleep the surgical team had a field day. Here's what I know about:
IVs - They started a second IV in my right hand. And they started "arterial" IVs in each wrist. So I woke up with four IVs. I think the arterial IV was used to measure my blood gasses?
Blood pressure cuff - put on my right arm and it was automatic all day.
Calf compression - I had put on compression socks that morning, but they added something to each leg to inflate and deflate automatically to keep the blood flowing. I was stuck with them for several days.
Catheter - Self explanatory.
Monitors - they wired up my face and neck. The brain stem was stimulated regularly through the day to see if the signal was still flowing. This deteriorated through the day, so they knew before I woke up that my face would be weak (the term for not moving) and that my right hearing was gone. (However, they reassured me and my family that the facial nerves are intact and will heal in time.) The monitors were gone when I woke up.
Bolted head - they bolted my head into a vice-like frame to ensure that nothing moved. That was gone when I woke up, but it left three small spots that have since healed.
When I woke up, I still had the blood pressure cuff, 4 IVs, oxygen in my nose, and a clip on my finger. The first sensation that I had was extreme back pain, followed by my left side hurting and feeling hard as a rock, and eventually my head aching. I had to lay on one side motionless all day during surgery, thus the side and back pain. And the rest is history.
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