My tribute

When I was in 6th grade I had my first crush on a tall thin freckle faced 7th grader. In high school we became an item for a while and while I was away at college we would get together for dinner every so often. When I moved back to the area, we met up again and Brad and I got married on July 7, 2002. Our lives always led us back to each other. If that isn't divine intervention, I don't know what is.

We were soul mates. Boy we could make each other mad, but we sure laughed ourselves through some rough times. We could sit across the room, and with one look, know exactly what the other was thinking. We would sit on the front porch after the kids went to bed and solve all the world's problems. When my mom died I was devastated and he stood beside me, quietly being my support. He gave me two wonderful boys who will always remind me of him.

Eight years ago today, while Brad was flying back from business in Germany, I was diagnosed with breast cancer. When he got home, he looked at me and said, "Don't worry. It will be OK. We will get through this together." After my diagnosis, he found himself with many responsibilities that no new husband should have to do. But he did them. He knew when to hug me and when to give me some space. But most importantly he knew when to kick me in the butt, remind me when to stop feeling sorry for myself, and to get on with it! He got used to sudden plan changes when my cancer would flare up and I would often tease him about picking a lemon like me. Then we would laugh and move on!

It is easy to make promises, but Brad was a testament to keeping them. To a friend, a neighbor, a relative, a friend of a friend, it didn't matter. He was always ready to solve a problem of fix a need. Last night so many people turned out to give their condolences. My boys and I were so proud to see how many people cared about Brad. I hope it creates a memory for them that will last their entire lives.

People keep telling me how strong I am. To be honest, I think my strength came from him. He was my pillar of strength. He is still with me as he will forever live in my heart and in the hearts of the boys. We are soul mates, connect on a level that a lot of people don't understand. And I still feel him with me. I will miss those strong arms around my shoulders and now I will laugh alone. But I see him in the eyes of my children and he will help us through each day.

Thanks to everyone for their thoughts and prayers. I cannot thank my brothers, Don and Scott, and their wives Jackie and Brittany enough for putting their lives on hold and helping with so many details. To my dad who lost his father when he was 9 and has weathered the death of my mom. He has been a total comfort, sounding board, and source of information to us. I am thankful for Brad's parents and sister who have been so supportive and helpful. And to all the people who have brought food, mowed grass, filled the water softener, helped me clean. I just can't say 'thank you' enough for all the help I have received.

It is time for me to take a deep breath and get ready for the day.

Brad, you will always be my heart and I will love you forever.

Back to school

School started on August 23rd for my boys. With almost three weeks under our belts, we have fallen back into the 'old' routine of getting up early, reviewing school work at the dinner table, and going over spelling words in the car. This year, I was really sad to see them to go back to school and it wasn't just my normal dread of getting into the routine. This summer I really enjoyed hanging out with them and I knew I would miss our time together.

Trent is in 2nd grade this year and Ian goes to Pre-K four mornings a week. They are really growing up. I loved when they were chubby little babies, but this summer I realized how much I enjoy them now. We can go places without having to haul diapers and bottles and plan around nap schedules. I enjoy hearing their conversations and observations about the world and now they ask some of the funniest questions. They have each developed such unique personalities that make me wonder how two kids that came from the same parents can be so different.

Sure, toward the end of the summer they were getting a little tired of each other. On those days, I felt more like a referee than a mom. But for the most part we just enjoyed being together. We did bible school, went to a local water park, swam in the neighbors pool, went to baseball games and birthday parties, enjoyed the Outer Banks, went to a drive-in movie, spent time at the park, and sometimes just played at the house!

So now that we are back to the routine I have become the enforcer of bedtime, homework, clothes that match (thank goodness Trent wears a uniform), early morning rising, and chores. Trent still wants me to volunteer at the school . (Yes, he still kisses me in front of the school when I drop him off.) We have gotten our morning routine down to a science and are working together on a scrap book to remember all the fun we had this summer!

I must admit that I am looking forward to fall because it is my favorite season, but I do already miss those hot lazy days of summer and hanging out with my boys!

I really like your hair!

So, the other day a vendor came into my office and, as soon as she saw me said, "oh, I really like your hair." I wasn't in the mood to go into the long story about how it was a wig and then explain that I have cancer, so I just said 'thanks' and we moved on. When she left I started thinking about it and decided being bald isn't so bad. I have two wigs, both about the same color. One is straight and the other is curly so I do have a little variety. Wigs make getting ready in the morning super quick and I haven't had a frizzy hair day all summer!


With that said I still stand by my mantra from my first go-round with baldness all those years ago...'a bad hair day is better than a no-hair day.' So, I was excited last week when I realized that my head was itching! I had noticed that my eyebrows were growing back a few weeks ago and was so excited at the possibility that my hair was making a comeback. When you have spent time being bald, even the shortest hair seems lush and luxurious. The boys were happy to inspect my scalp and report that indeed stubble was starting to appear!! Visions of hair clips and blow drying starting to fill my head until Brad took a closer look. It seems that for some reason my hair is coming back in a 'male pattern baldness' way. The sides and back are full of stubble, while the top is still as smooth and shiny as a baby's behind!

I really thought that like last time, it would be an all or nothing thing: bald or hair. It never occurred to me that it would grow back half way. Good grief. It is really funny to look at though! I guess for Halloween all I will have to add is a red nose and a bicycle horn!

I wonder what the vendor will have to say the next time I see her!

Strength and Courage

Lately I have been doing a lot of thinking about strength and courage. Over the last eight years I have heard a lot about them. To be honest, I would kick strength AND courage to the curb if someone would tell me my cancer is gone. It makes me wonder if people always have them or if they somehow develop within you when you don't really have a choice.


Several weeks ago our neighbors and good friends lost their son in a automobile accident. Through the weeks that have followed, I have watched them become a true example of strength and courage. His sister gave the most beautiful tribute at the memorial service. I sat there thinking that I could not imagine speaking to that large group of people during such an emotional time. As a parent, I cannot imagine losing a child no matter how old or under any kind of circumstance. It just seems unnatural. His parents, though, through their grief, were open and honest about his stuggle with addiction in hopes that their message would reach another family working through the same issues. I really can't imagine being in such pain and having the strength and courage to think about trying to help others.

I was sitting with them a couple of nights ago, enjoying the fresh evening air and talking. His sister said something to me that really made me think. She said, "it is funny, but by him dying I have found my faith." I have thought a lot about her comment and how it makes sense to me.

After giving it lots of thought, I think faith sets a foundation for strength and courage. Faith becomes your building block that gives you the strength and the courage to fight through the tough times in life that no one warns us about. And that is why faith is one gift I am really trying to give my boys. I hope it will give them the strength and courage that they will need to navigate this thing we call life...just as it has for me.

Sue who?

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!

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.

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.