I guess growing pains like this are normal for any family. There were years, many of them, that I never thought eating in a 'nice' restaurant with my family would be a possibility. There were the spills, the tantrums, just the hustle of getting everyone out of their coats and seated. The meals that came well after the kids were willing to sit still. The years we were limited to a buffet because we could eat in shifts while entertaining. The times we just gave up and went to a fast food joint with a play center. When they were babies, and we would just get settled just in time for a bottle (or a diaper change.) I was always armed with notepads, crayons, and stickers. Times when I got everyone's food cut, then turned my elbow just right to catch a straw in my sleeve and tip a glass into my food. Yes, I am hoping that at least a few parents of small children reading this are shaking their heads.
Last winter something marvelous happened to our family. I was still in my wheelchair and we went to Logan's Roadhouse for lunch. The boys ate peanuts and flipped them on the floor, they ordered for themselves, and they sat and ate like little gentleman. Since, then it has been all up hill. I look for coupons and use gift cards at any turn because eating out with them has become such a fun experience! We relax, take our time, laugh a little, and I love it!
It seems like such a simple thing, and we don't do it often but I do enjoy it! Last night we upped our game and went to Ruby Tuesdays. I know....we do like to live on the edge. The kids are on a salad kick so when they ordered the salad bar and a side of mashed cauliflower, I wasn't too shocked. I smiled as Ian had a little jazz step to the music as I followed him up to the bar. The food was good, the kids were good and we were just relaxing and enjoying the meal. The service was slow, but no one seemed to mind. We were just having a good time!!
After completely cleaning up all their veggies, they asked if they could have dessert. We decided a dessert split was in order! We looked it over and I ordered; some chocolate concoction with two plates for the boys and tiramasu to split for Brad and I. Ian turned to look at me and said, "Who in the world is Terrible Sue."
I'm not sure who giggled more. That Ian gets us every time! What a great date with my guys! We have come a long way!
7.24.2011
7.21.2011
Today I feel....
blessed.
Life is full of 'those' moments. You know, the ones that make you feel like you are on the edge of a cliff, about to embark on something new. There are the good ones, the sad ones, the exciting ones, those that are terrifying, and the ones that you know will change your life forever. I have had a lot of those moments. I guess we all do.
Last Thursday I had one of those moments and it was terrifying. So quickly I was in pain and worse than the pain was the fear. I was so fearful that something neuorolgically had gone so wrong so sudden and I was afraid that I was having one of those moments that would change things forever.
I feel so blessed that I work with a group of girls who know when to spring into action, and when to give me some space. I feel blessed that I have a sister-in-law who is so smart. I thank God for Aly who for some reason gets into these messes with me! I am thankful for a family who can implement 'plan b' at any moment of any day. I feel blessed because the staff at the hospital was so accommodating and worked with my doctors at Hopkins. My Doctor K was on his cell phone with me in the ER at 7pm so we could set up an 8am appointment the next day to begin a solution. And I feel blessed for my poor frazzled husband who has deal with a wife on pain medication AND steriods!
My dad and I went to Hopkins today for my regularly scheduled appointment. As you know, I have to go every three weeks to see my doctor during my 'off week' from the chemo pill. Thanks to the wonderful organization of the hospital in Martinsburg, when we arrived she already had my CT scans from my ER visit as well as my bloodwork in her computer system. And guess what? My CEA tumor marker was 12.6. Yes, that is right. I don't ever remember getting a lower score. There were no noticable changes on the CT. Nothing noteworthy. As I wrote in the last post, there may have been a slight change in the position of the lesion that just caught that nerve. It turns out any little abrasion on a nerve like that will cause pain and it will go away when the radiation has done its job on that little spot.
So, I am a little sore. I will have to work down from the steriod in the next week or so. I have to remember to take it easy as the steriod gives me energy and I want to keep moving. I will continue the chemo, and I will finish up radiation next Friday. And things are good. Very good.
Today I just feel super blessed and humbled and happy to have another day! Today I plan to enjoy every breath! Today I am going to remember to focus on what is important because as we all know, one of 'those' moments can be right around the corner.
Life is full of 'those' moments. You know, the ones that make you feel like you are on the edge of a cliff, about to embark on something new. There are the good ones, the sad ones, the exciting ones, those that are terrifying, and the ones that you know will change your life forever. I have had a lot of those moments. I guess we all do.
Last Thursday I had one of those moments and it was terrifying. So quickly I was in pain and worse than the pain was the fear. I was so fearful that something neuorolgically had gone so wrong so sudden and I was afraid that I was having one of those moments that would change things forever.
I feel so blessed that I work with a group of girls who know when to spring into action, and when to give me some space. I feel blessed that I have a sister-in-law who is so smart. I thank God for Aly who for some reason gets into these messes with me! I am thankful for a family who can implement 'plan b' at any moment of any day. I feel blessed because the staff at the hospital was so accommodating and worked with my doctors at Hopkins. My Doctor K was on his cell phone with me in the ER at 7pm so we could set up an 8am appointment the next day to begin a solution. And I feel blessed for my poor frazzled husband who has deal with a wife on pain medication AND steriods!
My dad and I went to Hopkins today for my regularly scheduled appointment. As you know, I have to go every three weeks to see my doctor during my 'off week' from the chemo pill. Thanks to the wonderful organization of the hospital in Martinsburg, when we arrived she already had my CT scans from my ER visit as well as my bloodwork in her computer system. And guess what? My CEA tumor marker was 12.6. Yes, that is right. I don't ever remember getting a lower score. There were no noticable changes on the CT. Nothing noteworthy. As I wrote in the last post, there may have been a slight change in the position of the lesion that just caught that nerve. It turns out any little abrasion on a nerve like that will cause pain and it will go away when the radiation has done its job on that little spot.
So, I am a little sore. I will have to work down from the steriod in the next week or so. I have to remember to take it easy as the steriod gives me energy and I want to keep moving. I will continue the chemo, and I will finish up radiation next Friday. And things are good. Very good.
Today I just feel super blessed and humbled and happy to have another day! Today I plan to enjoy every breath! Today I am going to remember to focus on what is important because as we all know, one of 'those' moments can be right around the corner.
7.15.2011
When plans go awry
So things have been rolling along. I am getting used to my Xeloda side effects which are turing out to be quite predictible each week. So much so that I know this coming Tuesday afternoon I will get a mouth sore on my bottom right gum. I will have to chew on the other side of my mouth until Thursday afternoon when it disappears. Strange, but true!
We took the boys to the drive-in theater last weekend to see Cars 2, I have been trying to arrange my schedule so we can do bible school in two weeks, we have been working the Thursday night concerts, and swimming in our neighbors pool. Other than a few projects around the house, we have been taking it slow and thinking about what kind of activities the boys want to participate in this fall.
On Wednesday I was driving home from work when it felt like I got stung on the top of my thigh. I looked down and didn't see anything. It happened one more time on the way home from work and I made a mental note to check it when I got home. I thought maybe there was a pin in my shorts or something. When I got home I forgot to check. This happened again on Thursday morning in the same place, but I didn't think much of it until lunchtime.
I was on my way down the hall at work when a shooting pain went through my right thigh and almost dropped me to the floor. I felt like I was being stung by a 1000 bees and my skin was on fire. I looked down expecting to see a giant expanding bruise, but there was nothing. I shook it off enough to make it back to the seat in my office. I called my sister-in-law to describe my pain. After listening to me for a few minutes she said it sounded like meralgia paresthetica. Huh? She said she was going to look at something and in 5 minutes I had an email with information about this condition. She is going to make one heck of a doctor because she was spot on!
I have had some pain and this ranks up there pretty high. It is like having a pinched nerve that just won't go away with sudden knife like stabs, burning and then stinging. Thanks to Aly who following me around with my office chair and her mom (a nurse) who urged me to get it checked out, we ended up in the Emergency Room about 3pm yesterday afternoon. Aly was a trooper. I know that it must be hard to see a friend in so much pain, but she and the folks in the office hung in there with me and got me where I needed to be. Aly even stayed until Brad could get there and then she covered the concert last night. Thankfully the boys were with Cindy and Glen and they kept them all evening and had a sleep over.
So, here is the deal on this one. A CT of my head revealed that it is looking good! Yeah! All my other lesions in my body are either the same or smaller than my last CT in April. Yeah! Except, there seems to be just the tiniest bit of growth of a lesion on a vertebrate in my lumbar spine. I was aware it was there, but at this point they just can't treat everything until a problem arises. This lesion is very close to where the lateral femoral nerve leaves the spinal column and goes to the leg, giving your leg feeling and the capability to communicate with your brain. Somehow this lesion is hitting the nerve causing the pain and now numbness in my right thigh. Funny thing is that this is my 'good leg' and hasn't had all the trauma of my left leg (femoral rod, blood clot, lots of radiation.) Anyway, as long as I am sitting I am fine. Sometime I can walk a little and it is fine, but then it hits and it is rough!
Luckily the emergency room doctor was very thorough and talked to the oncologists at Hopkins and then called my radiation oncologist, Dr.K. Dr. K spoke to me at the ER last night and told me to be in his office at 8am this morning for radiation set up! He knows me...he knows I like to move FAST!
What does all of this mean? Well, I am on steriods and some pain meds. Although I am not a fan of steriods, they are making me VERY hungry and it feels so good to be hungry! (Someone remind me of this when my face gets fat again!) So far they seem to take the edge off the pain, but I am still doing a lot of sitting. This morning they set me up for yet another round of radiation to get that spot on my lumbar vertebrae. I start Monday morning and will continue for 10 treatments. I have a scheduled appointment at Hopkins on Wednesday so I will take my scans and get my bloodwork for that. Dr. K promises to have me back to work next week!
Brad and I left the ER last night around 8:45pm and went to get my perscriptions filled. While we were waiting we went to Dairy Queen to get a little snack. We started discussing the timing of this sudden change. At least we weren't at the beach, at least the kids don't have school, at least all the activities are done right now, at least it wasn't Relay for Life weekend or someone's birthday weekend, at least we didn't have big plans this weekend, at least I don't have a fractured pelvis AND a brian tumor this time! I said a big thank you prayer last night that it is something they can fix and not a neurological issue. But I do wish we could have a date night that doesn't start with, "after they let Toni leave the hospital!" LOL! As Ian says...no worries mom!
Please note that this was written by me...on steriods. Please excuse any typos, or missing words, etc.
We took the boys to the drive-in theater last weekend to see Cars 2, I have been trying to arrange my schedule so we can do bible school in two weeks, we have been working the Thursday night concerts, and swimming in our neighbors pool. Other than a few projects around the house, we have been taking it slow and thinking about what kind of activities the boys want to participate in this fall.
On Wednesday I was driving home from work when it felt like I got stung on the top of my thigh. I looked down and didn't see anything. It happened one more time on the way home from work and I made a mental note to check it when I got home. I thought maybe there was a pin in my shorts or something. When I got home I forgot to check. This happened again on Thursday morning in the same place, but I didn't think much of it until lunchtime.
I was on my way down the hall at work when a shooting pain went through my right thigh and almost dropped me to the floor. I felt like I was being stung by a 1000 bees and my skin was on fire. I looked down expecting to see a giant expanding bruise, but there was nothing. I shook it off enough to make it back to the seat in my office. I called my sister-in-law to describe my pain. After listening to me for a few minutes she said it sounded like meralgia paresthetica. Huh? She said she was going to look at something and in 5 minutes I had an email with information about this condition. She is going to make one heck of a doctor because she was spot on!
I have had some pain and this ranks up there pretty high. It is like having a pinched nerve that just won't go away with sudden knife like stabs, burning and then stinging. Thanks to Aly who following me around with my office chair and her mom (a nurse) who urged me to get it checked out, we ended up in the Emergency Room about 3pm yesterday afternoon. Aly was a trooper. I know that it must be hard to see a friend in so much pain, but she and the folks in the office hung in there with me and got me where I needed to be. Aly even stayed until Brad could get there and then she covered the concert last night. Thankfully the boys were with Cindy and Glen and they kept them all evening and had a sleep over.
So, here is the deal on this one. A CT of my head revealed that it is looking good! Yeah! All my other lesions in my body are either the same or smaller than my last CT in April. Yeah! Except, there seems to be just the tiniest bit of growth of a lesion on a vertebrate in my lumbar spine. I was aware it was there, but at this point they just can't treat everything until a problem arises. This lesion is very close to where the lateral femoral nerve leaves the spinal column and goes to the leg, giving your leg feeling and the capability to communicate with your brain. Somehow this lesion is hitting the nerve causing the pain and now numbness in my right thigh. Funny thing is that this is my 'good leg' and hasn't had all the trauma of my left leg (femoral rod, blood clot, lots of radiation.) Anyway, as long as I am sitting I am fine. Sometime I can walk a little and it is fine, but then it hits and it is rough!
Luckily the emergency room doctor was very thorough and talked to the oncologists at Hopkins and then called my radiation oncologist, Dr.K. Dr. K spoke to me at the ER last night and told me to be in his office at 8am this morning for radiation set up! He knows me...he knows I like to move FAST!
What does all of this mean? Well, I am on steriods and some pain meds. Although I am not a fan of steriods, they are making me VERY hungry and it feels so good to be hungry! (Someone remind me of this when my face gets fat again!) So far they seem to take the edge off the pain, but I am still doing a lot of sitting. This morning they set me up for yet another round of radiation to get that spot on my lumbar vertebrae. I start Monday morning and will continue for 10 treatments. I have a scheduled appointment at Hopkins on Wednesday so I will take my scans and get my bloodwork for that. Dr. K promises to have me back to work next week!
Brad and I left the ER last night around 8:45pm and went to get my perscriptions filled. While we were waiting we went to Dairy Queen to get a little snack. We started discussing the timing of this sudden change. At least we weren't at the beach, at least the kids don't have school, at least all the activities are done right now, at least it wasn't Relay for Life weekend or someone's birthday weekend, at least we didn't have big plans this weekend, at least I don't have a fractured pelvis AND a brian tumor this time! I said a big thank you prayer last night that it is something they can fix and not a neurological issue. But I do wish we could have a date night that doesn't start with, "after they let Toni leave the hospital!" LOL! As Ian says...no worries mom!
Please note that this was written by me...on steriods. Please excuse any typos, or missing words, etc.
7.04.2011
How can he be 8 already?
This year Trent lucked out! He celebrated his 8th birthday three times! Typically we have one big party with family and his friends but this year we were at the Outer Banks for his birthday! So we had a little party at the beach, lunch when our family was in town for the Relay for Life, and some of his friends over on Saturday for a playdate complete with scavenger hunt, water balloons and dogs cooked over the firepit!
As a January baby, I only got to celebrate at the beach when our family lived in Hawaii so I thought it was really neat for him to spend his big day playing in the sand! But, when asked, his favorite part of his birthday celebrations were the water balloons with his friends at the house. Ian, however, insists that we will be spending his birthday at the beach....on January 11th.
No matter how we celebrate, it is important to me that we make birthday memories! This year I hope he remembers his family sticking around town after a very long day at the relay to celebrate with him. I hope he remembers waking up at the beach on his big day and being buried in the sand. Finally I hope he remembers the simple summer fun on a hot summer day with his friends.
It is hard for me to believe that he is eight already! Happy Birthday Trent!
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