'Tis the Season

We had a wonderful Christmas this year! It was a group effort and it turned out great! The boys were really excited and seeing their faces full of anticipation made me look in the sky to see if Santa really was on his way! They were both so excited on Christmas Eve to pick out the cookies (thanks Aunt Carol and Mary) that they thought Santa would like best! It was so magical for them and I can't explain how precious these Christmas memories will be. On Christmas morning Santa had put out lots of presents (thanks Doug) and they were up at 4:30am to see if it was time to go downstairs! I made them wait until 5am before realizing that no one was going back to sleep (thanks dad for being a good sport).

We had a relaxing morning around the tree, with great breakfast casseroles (thanks Lisa, Teresa, and Cindy) and lots of assembling and building. My in-laws came up to enjoy the day with us and it was perfect! We are taking it easy this holiday season and we are having a lot of fun!

If you invited us to a party this season and we declined, I want to let you know that the week before Christmas I was denied chemotherapy because my white counts were too low. I had been fighting a cold and endured two back-to-back weeks of the chemo drug. My doctors asked me to be careful about going places with lots of people in close quarters. It was kind of a blessing in disguise as I was able to relax and we were able to keep Christmas low-key. I was pleasantly surprised with great counts this week and the boys continued to enjoy new toys while dad and I went to Hopkins today for chemo and the pleurix tube was removed!

We are looking forward to seeing my brothers and their families this weekend for a 'good old-fashioned Gusic family Christmas.' Then we will attempt to stay up late and watch the ball drop. I have lots of hopes and dreams for 2012. It is going to be a good year!

I hope everyone had a Merry Christmas that you enjoy many blessings in the coming New Year!

Beware the Bear

I did promise a few funny stories. This is one of my favorites and I usually have a hard time telling it without laughing.


It was Labor Day weekend, 2008. My cancer had come back in the spring and we had been dealing with surgeries and medicine changes and a little bit of stress all summer. Our wonderful friends and next door neighbors invited us to their cabin in beautiful Pocahontas County. They had asked us several times before, but this time we REALLY needed to get away. Most of her family, complete with lots of kids the boys ages, would be there and we were very excited!


There was so much for the boys to do and the first day was so much fun! We got there, unloaded, played on the swings, caught salamanders at the pond, rode the trails, walked down to the river, did a little fishing, and lots of visiting. It was just beautiful and they all treated us like part of their family. The fresh air made us all tired and well after the sun had set we headed to the guest room. There were two twin beds; one for Trent and Brad; one for Ian and I. Ian wasn't even two yet and he had a tough time falling asleep, by the time he fell asleep Brad was snoring so loud that Trent started to complain, then Trent fell asleep so soundly that we were all awakened a few hours later when Brad shot out of bed to shout, "Trent just peed on me." Needless to say, it was not a restful night.


The next day, after a lot of outside fun and a wonderful bonfire cookout, we opted to head home instead of staying another night. It was late and the boys fell asleep quickly. As we rode along, Brad and I chatted and listened to the radio. Suddenly, I started feeling like my stomach was being tied in knots. With all my meds, I never really knew why I would have these attacks, but I did know that I was going to need a bathroom...soon! It was the middle of the night and we were on some very remote roads. Brad promised that there was a store up ahead. By the time we got to the store, I was shaking and sweating. The store was CLOSED. There was nothing. Not even a port-a-pot near the picnic area.


As we pulled out of the parking lot, Brad promised that there would be someplace several miles down the road. Suddenly, I realized that I could not last any longer. After several failed attempts to find a place to pull over, he found something. As soon as that truck came to a stop, I hopped out, closed the door, ran toward the woods, and dropped trou. I didn't have any clue where we were, it was pitch dark, and I think that is the sickest I have ever been. Brad rolled down the window a little and said, "hurry up, someone is going to come." I tried to think of something clever like, 'I am having such a fun time I thought I'd stay out here,' but when I looked up to reply, the window was already rolled up. It was then I realized that the truck was shaking. Because he was laughing so hard.


I collected myself and got back in the truck. I think Brad wasn't sure if I would be mad or not so we rode in silence for quite some time. Then he started laughing, a real uncontrollable laugh that he couldn't hold in anymore. What I hadn't realized is that we were in a park-n-ride area when we pulled over. Brad could hardly contain his laughter while saying: "the DNR is going to be on high alert for some dying bear when they see that on Tuesday." Then we both laughed. And for every trip after, he was sure to point out the park-n-rides and ask if I needed to stop.

Selfless Giving

This past year has been, among other things, a huge learning experience for me. I'm sure you can imagine what I am talking about. I could spread things out and make an entire four-year college curriculum from the things life has taught me this year. But I think I learned the biggest lesson last night.

This fall and winter we have been helped by so many people. On the top of my list is always my dad and my in-laws who I couldn't live without. There are also friends and family who have taken care of mowing, cleaning, working in the yard, and helping with the kids. I haven't had to worry about where are meals are going to come from. It seems that food just appears out of no where. There is my best friend, Aly, who visits me and is always there for me to bounce ideas off of...never judging...always being the best friend a girl can have! A group of Brad's terrific friends who spent an entire Saturday working on unfinished parts of the basement and got it looking great! We had friends take us to The Lion King Broadway production (something I have always wanted to see). We have had total strangers fix the car, assessors give us values, dry clean our coats; without accepting payment. And I can't forget about the Saylor Family Fun Night that my co-workers and friends worked so hard to put together.

I guess pride makes it hard for me to accept these acts of kindnesses without being embarassed. Brad and I were always proud that we could go it alone, make things work, and get through anything. But someone once told me, "Toni, when you give to someone else, it gives you joy. So don't steal that joy from someone else. Be gracious and don't steal their joy."

A few weeks ago I started getting emails from a woman at our church. We are members of a large Catholic church and I hate to say it, but I don't know all our church family members by name, but I never forget a face. So, when she friended me on facebook, I knew who she was, but we didn't know each other. She had a group of 'elves' who wanted to help our kids have a memorable Christmas and she needed a little information. Well, what she did with that 'little information' was amazing.

Last night the doorbell rang and 'elves' sprinted back across the yard...trying to keep their identy a secret. The boys went to answer the doorbell and started yelling and bringing in package after package. They were happy to see the note from Santa that said they could open them right then as long as it was OK with me. As they started separating the presents into piles, I looked out the window to see people with candles walking toward the front porch. The 'elves' had picked up some friends and we had the pleasure of listening to about 60 beautiful carolers. There was a guitar and bell choir as well! Standing on the porch looking at them with their candles and santa hats, realizing some of them I knew but others I didn't; I learned one more lesson.

This lesson is called selfless giving to a total stranger. I can't believe someone who doesn't even know me would go through such great lengths to help me make this a memorable Christmas for my kids. They will remember standing there with me long after I am gone. Just like the Saylor Family night, they are going to talk about it all the time. It also made me think that selfless giving is something I do not do nearly enough. Last night I started to ask myself, if the tables were turned, would I have spent so much time during the holiday season trying to help out someone I didn't know to have a Merrier Christmas? I am really embarassed to admit that I am pretty sure the answer would have been 'no'.

I always tried to be generous, but the truth is that I could do more. It has been difficult for me to swallow my pride and be a gracious receiver this year. But, the truth is that I needed you. All of you. This has been hard and I could never have gotten through this fall without the love and support of people I know as well as those that I don't. We have been receiving, but we are in great shape now. It is time for me to give it back, pay it forward, practice what I preach. I would like to thank Marti and her elves for showing me how I too can be creative and help someone who is in need....even someone I don't really know.

To you guys who read my blog, I want to thank you. And I want you to know that we are going to be OK! But, if you would really like to help us this Christmas, look around for another family or another person who is lonely, or missing a loved one, or is sick and help them out on behalf of us. Father Brian always tells us that Christmas is not a day....it is a season. So, we still have plenty of time. I will be trying to teach my boys another memorable lesson this Christmas. Something I forget sometimes....it is truly better to give than receive.

The best

I had a huge amount of respect for her...and a little bit of fear of her too. I never wanted to disappoint her. She was a wonderful motivator and I knew she was my biggest fan. She was super organized and I always knew that she had my back. She worked so hard to make every holiday special. Each and every birthday was a celebration. She was honest and kind. She taught me everything I know about having strength and knowing when to fight. She grew up poor, but always made her childhood stories sound so rich. My dad was the love of her life. She taught me how to walk, how to study, and how to weed out 'the good ones.' She was my best friend.

It was through her fight with cancer that I learned that you can push through a lot of pain and fear to try to find a normal balance in life. In her final days she taught me not to be afraid. She gave me faith. We would have never imagined how much I would need those final lessons. I try to talk about her often so the boys will know how great she was. I was so blessed to have such a wonderful mother for 28 years. She was the best.

Gwendolyn Blackmon Gusic

February 18, 1951-December 13, 2002

Christmas Eve Chemo

One of our favorite chemo stories happened on Christmas Eve 2003. It was Trent's first Christmas and my chemo session happened to fall on Christmas Eve. We debated on whether or not to adjust the days, but it just seemed easier to go ahead and work chemo into Christmas Eve. With my original diagnosis, I had four sessions of one kind of chemo then four sessions of another type of drug. Christmas Eve was to be the first session of the second drug. So, I had already weathered four sessions and my dad and Scott had taken turns taking me. We had all just been through a year of cancer treatments with my mom and we all knew that chemo can mean a VERY long day.

If you had the pleasure of knowing Brad, you would have known that, if given the choice between a day of manual labor and 15 minutes waiting in a doctors office, he would take the manual labor. Hands down. Brad was off on Christmas Eve and insisted on taking his turn with a chemo trip. I tried to talk him out of it, but he insisted that this would be fine! He assured me that it would all work out and he could do it. He didn't mind waiting on the chemo and felt sure we could still make it home to take Trent to a family party that evening. They had told me that the chemo would take three hours and he had it all calculated perfectly!

So, Christmas Eve morning we headed to Baltimore and sat and waited to see the doctor, then we sat and waited for the pharmacy to mix the drugs, then we sat and waited for an open chemo seat, then we sat and waited for an IV, then we sat and waited for the pre-meds to drip. I thought he was doing a great job at waiting. Every so often I would see his leg bounce a little and he would wring his hands, but he didn't say anything. Then the nurse came in with a giant bag, hung it on the pole and said, "OK Mrs. Saylor, now that will drip for three hours, we will flush you, and you can be on your way." I literally thought his eyes were going to pop out of his head!

I still smile when I think of how we drove home at the speed of light that night. I don't quite remember how fast we went, but I do know that although Brad accompanied me to lots of doctors appointments after that, he didn't accompany me to another chemo! When we would laugh about it he would just say, "come on...I was 29-years-old taking my wife to chemo. It was our baby's first Christmas and I had just spent 8 hours of my life in a doctors office on a very uncomfortable chair! What heartless trooper would give a ticket to a guy like that!" He was so much fun and our stories still make me laugh!!

Chemo...round whatever...ding ding

The port went in fine last Tuesday and on Wednesday my brother and his family came in for Thanksgiving. We all gathered at Scott's on Thursday to celebrate Thanksgiving. It was a great meal and a wonderful visit. As much as I love Christmas, it is hard to beat a holiday that is all about visiting with friends and family, eating, and watching football! Brad and I enjoyed the eating and then scouring the sale ads, trying to stretch those Christmas Club dollars as far as they would go. I guess that's why I got them. The blues.

I realized over the past week that when the sun came up I was wishing it would go back down again. The mornings have been hard, but once I get in a good cry I can get up and get on with my day. Maybe it is the holidays or maybe it is the coming to closure of some of the things on my enormous list of 'to dos,' or maybe it is just part of the process. Whatever it is, I've just been more on the sad side of life and I really miss Brad. I'm sure he doesn't realize it, but my dad taking the kids to school each morning has totally saved me. I could never get them there on time right now.

Then there was the start of a new chemo yesterday. I don't know why, but I always get a little anxious when I start a new chemo drug. You would think that after eight years of this I would be over it...but I'm not. Yesterdays chemo was a turn point for me. My appointment was in the afternoon so we didn't leave Martinsburg until 1pm. Which gave me time for my cry, shower, and straightening up the house. Dad brought me some crab legs. (I know that sounds luxurious but one pound tastes good and stays in. My other food is rice and bagels.) We ran some errands and were off.

We sailed into Hopkins to meet with my doctor. I have lots of anti-nausea meds and strict orders to forget everything I ever learned about eating. I keep losing weight and, although I am a pretty big girl, it is time to stop the trend. She promotes little servings with lots of calories. "Whole cream in your coffee, add a scoop of ice cream to your smoothy, eat good protiens," she said. I used to have dreams about a doctor telling me that!

By the time I was out of the chemo chair it was after 5pm and we knew the traffic would be one big snarl. So, dad and I headed to the cafeteria for some dinner. For the record I did eat almost all of a 6 inch turkey sub...go me! Realizing that it was getting close to shift change, we went upstairs to the 5th floor where I stayed when I was hospitalized. The nurses had called to say we left our phone charger. I used that as an excuse to go up. I really don't care about the charger, but I REALLY wanted to see them. I couldn't belive that they remembered me! It was so good to see them! I hated that I missed seeing some of them but the hugs and smiling faces of the nurses I did get to see made me feel so good and, well, happy!

Another thing happened during chemo yesterday. I was sitting in the chemo chair and started thinking about Brad, so I told dad a story and I laughed. It felt so good. And I thought of another on the way home and I laughed even harder. I laughed so hard I could barely finish my sentences! I love to tell a good funny story about Brad and I. So, my next blogs are going to be some our funny times. I must note that they will seem funnier to people who have taken care of a cancer patient before.

We picked the boys up from Glen and Cindy's. They had them all washed up, in their pj's and ready for us! It was late and we had time for a story and then bed. Then I sat down and went through book bags, put things on the calendar, opened mail, dad heated the compress for my arm that is having issues, and then I opted to sleep in my bed instead of the recliner. I slept great and got out of bed when the boys started coming out of their rooms! I helped get them ready and I'm getting ready to head to work this morning. This has been a much better morning! I even found my smile!

In good timing, there is a Mass for Brad at church tonight. I will be there thanking him for all those funny stories we made together. I can replay them a million times in my mind. When I get stuck with the blues, those stories will make me feel like he is right here with me, pushing me to get up and get going. Life is waiting.

The good fight

Someone asked me to give some details of the pictures of my last post. They are all from the Saylor Family Fun Night. Since I am so organized, I ended up with my camera charged and ready, but I forgot to put the memory card in it! Go figure! So, Aly was my photographer! The bottom picture is of Ian with his first face painting. I thought they did a great job and he was a pretty cute tiger! You can ask my brother, Don, how easy it was to get the facepaint off!

The middle picture shows my boss calling out raffle numbers while Trent and Ian help hand out prizes. The other gentleman helping is Mr. Randy Smith. You may see Randy on TLC's show How the Lottery Changed my Life. A little over a year ago, Mr. Smith hit the lottery jackpot. I'm not sure how much he won, but I can say that he has be extremely generous with his money. He has donated to a lot of local charities including the Humane Society, Hospice of the Panhandle, the Martinsburg Police and Fire Departments, and Martinsburg-Berkeley County Parks & Recreation, just to name a few. He has given millions back to the community where he was born and raised. The boys had a good time handing out the prizes with Steve and Randy, two great role models in our community!

The top is a picture of my friend Jim and I. I met Jim in college while he was dating one of my friends. He was one of the funniest people I had ever met. In July 2010, after reading some of his posts on Facebook, I sent Jim a message. He had been diagnosed with cancer and we started e-mailing back and forth. He and his wife Jessica also have two small boys so we had plenty to talk about. We would e-mail about the kids, about the guilt we felt putting so much pressure on our spouses, getting nervous about test results, different procedures and scans. I guess it all goes with that old, 'misery loves company' addage.

I was so surprised to see Jim at the Saylor Family Night. He drove quite a distance to be there and I think he had a good time visiting with some of our Wesleyan friends! With his treatment, he was obviously totally bald and I have my lovely patchwork hair coming back. What a great photo opportunity! The fun night was held on a Saturday and Jim told me that he was a little nervous that weekend because on Monday he would get the results of his latest PET scan. He did and it revealed two tumors in his lungs so he was scheduled for surgery on Wednesday. His very brave wife posted yesterday (Sunday 11/20) to say that Jim had peacefully passed away. I am thankful to have known him and I pray for his wife and his boys, as I know all too well what they are going through. Jim, you fought the good fight, now you can rest in peace. You will be missed.

Feelin the love!

I'm going to start this post by thanking the best nursing staff I have ever had the pleasure of working with. My stay last week at Johns Hopkins was very unexpected and I was very scared. The doctors were great, but I cannot say enough about every single nurse that took care of me in the Weinberg Center. They are the greatest. I hope some of them are reading my blog so that they can pass the word about how much I appreciated their kindnesses!

I can't go much further without thanking my dad for dropping everything to take care of me. This is a very different kind of recovery because I find myself pretty lost without Brad. He was good at guiding me through this part. Dad has been a huge help at bridging that gap. Plus I am still not driving or staying at the house by myself. I remember promising my mom that I would take care of my dad when she died. I haven't been very good at holding up my end of the deal. I don't know what would have happened if Glen and Cindy hadn't come in to take the boys and Casey to their house. I had no worries about their care! Don, Jackie, Scott, and Michelle came for visits, bringing the boys when they could. It is kind of sad to realize that we don't sit down and talk one-on-one. I really enjoyed having time with them and getting to know each of them better!

I do have to admit, though, that I was happy to get home. I was so glad that I was able to make it to the Saylor Family Fun Night. It is hard to describe the feeling you have when you walk into a huge building like that and realize that all the activities and raffle prizes, all the food and activities, all the people and kids running around, they are all there because they love our family. There were friends from Wesleyan, friends from high school, aunts, uncles, cousins, co-workers, board members, teachers, friends from church, people who worked with Glen, people who worked with Brad, people who worked with dad, friends of the boys, and people I had never met. I would like to thank my boss, Steve and my friends in the office for all their hard work.

I have always thought that it was a shame that so many people gather at a funeral to celebrate the life of a person they love. I always say a prayer that they can see how many people come to pay their respects. I feel like this was our chance to celebrate our lives WITH friends and family. I really wish Brad could have been there, and I know, in a way, he was.

We are adjusting to a new 'normal' right now. I do have a blood clot in my left leg. I am taking shots to keep my blood thin and the clot should dissolve with rest. The pericardial window will keep the fluid from building up around my heart again. The fluid goes into my chest so their is a chest tube there that dad drains (daily this week, then as needed.) I will be going to Hopkins on Tuesday for a quick inpatient surgery to put in a port line. I will also see my oncologist to find out what kind of chemotherapy I will be changing to, the frequency, side effects, etc. The port line will save me from some of the arm 'sticks' that are common with chemo. I'm playing 'catch up' with all the estate paperwork and even went to work today to take minutes for the Board Meeting. I am taking tomorrow off as I feel like my body just needs a day of rest!

I cannot believe that Thanksgiving is next week! I am dreading the holidays without Brad, but do realize that I have a lot to be thankful for this year. The last couple of years have been tough ones, but when I look back on my life I see it as a very happy one. I have always felt loved. Not very many people can say that.

November 2011 Surgery Update

Although surgery got started a little late, everything went well and Toni is recovering. A small tube will stay in to allow for drainage and a larger one will be removed tomorrow during a minor procedure. As of right now, there are no obvious signs of what caused the fluid to build on the heart, but samples were taken and have been sent to biopsy. A blood test shown that her tumor markers are still at about 17, which is low. Hopefully tomorrow will hold more answers as to why the fluid started building up on the heart.

Thank you for all of your prayers, well wishes, and many kind words. Please continue to pray!

Dull? Whoever said my life was dull?

Let's start with Monday. It was Halloween and I went to Trent's Halloween Part, ran around a little while then proceeded with Trick-or-Treat. I think it is fair to say that we walked about a mile and a half, handed out candy, and visited before heading home. We literally just dropped our 'stuff' in the kitchen and got on with our week. On Wednesday at work I started feeling super tired. The kind of tired that makes you think you are getting a cold. By the afternoon I had my head on my desk and felt so fatigued! On Thursday I made it to take the boys to school just to return home and sleep and by Friday I knew something was going wrong as I was experiencing shortness of breath. So, Friday morning, dad took the kids to school and me to the Hagerstown Meritus Hospital Emergency Room. After a battery of tests, it was determined I had a large amount of fluid around my heart.

Between the coordination of both hospitals, it was decided that the safest thing would be to life flight me to Hopkins. Yes, that's right. Lifeflight. Now there is something I've never done before. It was really quite a nice flight and I was being wheeled into Hopkins before I knew it. We started with a needle to drain the fluid around my heart and now I have a drain. Yesterday they did several tests on my liver. So today we wait to see what is going on with my liver. They are going to remove the tube and surgically implant a 'window' intomy heart to assist with further draining. I'm not sure where we go from here, but it sounds like I will be here for a while.

Of course, my major concern is for the boys. Scott brought them to Baltimore yesterday and they stayed for a quite a while. Trent really wanted to come back so Michelle may be our shuttle bus today. I can't imagine how scary this must be for them. And so begins a new adventure for us. Please pray for me, Trent & Ian, my dad, Glen & Cindy, Michelle, Scott, and Don & Jackie. Something tells me it is going to be a long week!

Proud Mom

For the past two years Trent has been aiming for straight A's. Trent is smart and I know he is capable of anything he decides to do. He has had to work on concentrating on each task on his school work and not rushing through. We go over the papers that come home and we are working on good study habits. Each grading period he has ended up with at least one 'B,' typically in English. But this time he did it! All A's.

I'm not sure what made it so sweet: the fact that he achieved his goal or the fact that he was just so proud of himself. I could see the confidence in his eyes. All I could think of is that this kid has had his life turned around and upside down over the past six weeks and he did it! I believe he can do anything...and I'm hoping that now he thinks so too.

I was also super proud of what his teacher told me at our conference. She talked a little about his friends and how supportive this group of kids is of each other. Then she said that Trent is always the first one up to help. If she is carrying a box or someone needs help, he is up and ready. I saw this the other night when we went next door to join a big 'moving' party. Ian was running around with the kids and when I looked for Trent he was carrying things to the moving trailer. He is Brad. Brad was never much for standing around when there was work to be done. I see him in Trent so much and it makes my heart feel good.

It is so rewarding for me to watch him grow. I do depend on him for his strength, his help and his memory! Straight A's in 2nd grade may not seem like much to most people, but after these last couple of weeks that he has weathered, I couldn't be more proud!

(By the way, in the pictures above, Trent is in the top picture and the others are Brad.)

Find the joy

I consider myself to be a joyful person. A little dramatic sometimes and defiantly a type ‘A’ personality, but for the most part I’m happy. I am not good at sad. I can do it for a while, but then it gets old. Sometimes I’m good at feeling sorry for myself. Snapping me out of that was something Brad was great at. He would baby me for a little while and then let me know when it was time to get over myself and get on with my life. I would then focus on all the good things in my life and find my joy.

I remember a time last year when I had just had my brain tumor removed and my pelvis was fractured. He put the boys to bed and then helped me get cleaned up. As he was laying me in the bed I started to cry. I looked at him, still wearing his work clothes because he hadn’t had time to change; then around the room at the stacks of laundry. Then I thought about the dirty dishes still in the sink and I knew he was getting overwhelmed. He asked me if I was in pain and I told him no, but that maybe it would have been easier for everyone if the brain tumor had just taken me. He looked me square in the face and said, “you are full of shit.” And that was that. That was my queue to stop feeling sorry for myself and snap into shape. That night, when I got up I used my crutches to get to the bathroom instead of waking him up. I worked a little each day at getting better and started thinking about all the great things in my life.

I realized this weekend that I have been feeling sorry for myself lately. I’ve gotten frustrated, been grouchy, overwhelmed and whiny. It’s time to write some thank you notes and remind myself that so many people have been super supportive in so many ways.

This week I am going to work on happy. I want my boys to remember that no matter how bad you think things are, you can certainly find people who have it worse. I also want them to learn that when things are rough you really have to concentrate on your blessings. The joy is there; sometimes you just have to look a little harder to find it!

How are you?

'How are you?' is a question I get asked many times each day. I usually respond with something like, 'oh, we are making it through,' or ' taking things one day at a time,' or 'we are doing fine.' There are a handful of people that I can frankly tell that there are many times I would like to run out into my yard and yell a few choice words as loud as I possibly can.

The other evening I started to think about it. Really, how am I? Well, sometimes I am sad. Really, really sad. But I can't fall apart at the seams because I typically have two little sets of eyes on me. So I let them see me sad, just not really really sad. Sometimes I am angry. Angry at me, angry at him, angry at the world. Sometimes I look at people and I wonder what it would feel like to have your mother and your husband with you...oh and to not have cancer. I'm not even jealous, I just wonder what it would feel like.

There are times that I am just plain caught off guard. Like last week when Trent and I were having lunch and he said, "you know mom, everyone in my class has a dad." And there are times when I look around and I think of how blessed I am. Like when friends come to mulch my gardens, clean my house, mow my lawn, help me look for things, feed us dinner, fix things around the house, and meet me for lunch. So many of my family have bent over backwards to see that our needs are met. That makes me feel loved.

I remember these feelings and their phases from losing my mom. Sometimes I laugh and sometimes I cry. Sometimes the boys laugh and sometimes they cry. We talk and we pray and I try to help them through all the different ways they feel.

But, when the day is done and I put my head on the pillow at night I feel like half of me is missing. And I pray that one day when someone asks how I am doing I can honestly say I am doing great.

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.

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!

The Dish

Mary Jean Valent Gusic taught me how to play bingo. She was a short, black haired Croatian woman who was full of love and hugs with some spunk and determination added in. She was the epitome of what a grandma should be. She would get on the floor and play with us, always had food ready, and doted on us like we were perfect all the time! She was also very good at bingo. Although childhood memories can sometimes be a bit 'blurry,' I do have some memories of her that are still crystal clear. I must have been about Trent's age when I played bingo with her for the first time because she passed away when I was 10.

We were at the Greene County Fair and I don't think there was anything I didn't like about that fair. I remember the double farris wheel, betting quarters on the horse races with my cousins' Pappy, spending time in the barn with my cousins, and my Aunt Carol buying us those string bracelets with the metal clasps so we could ride all day. But mostly I remember playing Bingo with grandma under the pavilion.

In my mind I remember it being dark under that pavilion with the breeze blowing through the crowd. People, mostly women, would be sitting on the wooden picnic tables with their cards and markers. At one end was a long table filled with odds and ends...the prize table. Grandma was good. She had several cards and I remember wondering how she kept up. I played my one card and, although I don't remember calling BINGO, I do remember standing at that prize table. It was full of knick-knacks, plates, clocks and basically, well, junk. Because, after all, it was more about the socializing and playing than the winning. I remember picking out a light green dish and thinking it was such a treasure when I gave it to my mom.

Last Saturday I was telling this story to Brad and Trent, trying to describe the treasure I had won and sharing stories of grandma. On Sunday after church I went into my mom's sewing room to get a game down for the kids and there it was. Sitting on the corner of the file cabinet, filled with old buttons. My bingo prize! Of course I asked my dad if I could take it to show Brad. After all these years I can look at it and it brings back my memories of sitting in that hot dusty pavilion side by side with grandma. It doesn't match a thing in our house but it will always be prominently displayed. Everytime I look at it I will think of her and I wonder if she will have my bingo card waiting for me the next time I see her!

The Mask

After my post in January about the radiation mask, I have gotten several questions about it. The techs at Hopkins offered me the mask back then, but it was so big that trying to get me in a wheelchair with that giant thing back out to the car was a little intimiating, so I passed. But, when I finished my whole brain radiation in May, I did take the mask. The boys were so excited when it was my last day and they were truly disappointed when they saw it. I guess they thought it was going to be a spooky Halloween style mask.

So, here it is. What started out as a flat plate with small mesh holes was soaked in warm water and pressed over my face to make the impression. The base was then locked into place during each radiation treatment to ensure my head was exactly in the same position each session. To double check placement, they would take an x-ray or two each time.

The whole brain radiation was much more tolerable than the three long treatments in December. Eventhough I went for 15 sessions, they each only lasted a few minutes. The techs were very kind and quickly snapped the mask into place and rushed into the room to unsnap it as soon as treatment was over.

This was my sixth round of radiation treatment since my diagnosis. Most of my treatments were given Monday through Friday at the same time each day. Once a week I would see the doctor to discuss side effects. After my first week of brain radiation my doctor once again explained the side effects and complications. I asked him if, back in December when he saw the CT of my fractured pelvis and the lesion, he thought I would ever walk again. He promptly answered 'no.' I am glad he knew me well enought to NOT tell me that in December and it made me smile when I returned my wheelchair last week!

Up to speed

The Relay for Life was such a wonderful event and the next day I was TIRED! Originally I thought I was just tired from the day, but as the week progressed I realized that the radiation had finally caught up with me. The fatigue is perhaps the most annoying side effect I have ever experienced. After a full night of sleep I would still feel like I was moving through mud. Ten minutes of straightening the kitchen and I would have to sit down and rest for a while.

Compounding my frustration with the fatigue was the fact that on Sunday we met with my family to celebrate Trent's birthday since everyone was in town. That week was also filled with the boys' annual physicals, a trip to Hopkins, a summer concert, trying to work, and getting our family ready for a week at the beach. To add insult to injury, I also received my Zometa drip at Hopkins on Wednesday and it always makes me achy and sore.

I did take the computer to the beach thinking I would blog on the deck in the sun while listening to the waves. However, I found visiting with our friends and reading my book more relaxing! I did make a list on my cell phone of blog topics and as life settles down a little in the next few weeks I will start chipping away at those.

For now, I do have some great news to report. My CEA this time was a 31! (Normal is anything under a 32.) This is fantastic news for me! It means the Xeloda is working and I will continue taking it until things change. I have made some dietary changes and have been taking my anti-nausea meds continuously. This has made a HUGE change in my stomach issues! So, I will battle the fatigue for a little while longer and continue looking for signs that my hair is coming back!

Relay for Life

The Berkeley County Relay for Life was Saturday and it was fantastic! Since the event, I've been thinking about this blog and trying to decide how to describe how wonderfully awesome I thought it was. So many people came out to support our team! It was a little like my wedding. A day filled with people who have been part of my life in so many of its different stages.

My best friend from college, Maria, drove from Lancaster to walk. As fellow survivors we are able to share stories and laugh about things that people who haven't been so closely involved with cancer just don't understand. My aunts, uncle, and cousins made the trip from Western Pennsylvania. My brother and his family and my cousin and her family came from Philadelphia. Brad's parents, sister, aunt and cousins all came to walk. Our team members came throughout the day (many of them staying ALL day) to visit and walk. My dad, brother, co-workers, neighbors, friends, and so many people who have helped us get through the past year came.

And, like my wedding reception, it was all a little overwhelming. The day seemed to move along so quickly and there were so many people to talk to. It seemed like there was always something going on, someone coming or going, and kids running everywhere. I was so tired! I truly appreciate every single person who came out to walk. I feel very blessed and loved.

This was the first time I experienced the luminary ceremony. It was very touching and emotional. There were luminaries in memory of my grandma, my mom, and many friends who have lost their battle. As I walked my final lap that evening holding the hands of my boys, I relized that was the fourth lap I had walked that day. Not too shabby considering my doctor didn't think I would ever get out of the wheelchair. The day reminded me that I have not been on this journey alone!

Thank you to my team, my friends, and my family! We couldn't fight this fight without you!

Graduation Season!

Graduation season is upon us and I know this because my counsin's daughter is graduating from high school today. She was born the year I graduated from high school and it doesn't seem possible that 18 years have passed already. I remember the first time I saw her. It was 1993 and my parents were taking me to visit West Virginia Wesleyan College so we stopped on our way through to meet her. My mom sat and held her while we watched her little face pucker up then smile and I wondered what she could possibly be dreaming about. I did a lot of babysitting in my day, but that was the first time I had gotten to spend time studying a newborn. I was totally captivated and amazed by her.

Now, eighteen years later, she has accomplished so much and grown into a confident, kind, beautiful woman who makes our family very proud. I am left feeling old since I can remember my graduation day and it doesn't seem like it was 18 years ago. (And now I sound old too.)

I want to wish all the graduates good luck! One day when they realize that the babies born this year are about to cross that stage I hope they can look back on 18 years of happiness and remember their graduation day, 'just like it was yesterday!'

Congrats!

The sun is shining!

After several weeks of rain, this morning I am looking out the window at a lush green lawn with streaming rays of sunshine! It is going to be a beautiful day! We are going to do some housework this morning and then head to Trent's baseball game this afternoon. Glen and Cindy are going to take the kids to a cousin's birthday party this evening and the boys are all packed for their sleepover with 'Memaw and Pepaw' tonight! Brad and I are going out to celebrate with a nice dinner. (And maybe a trip to the grocery store.)

We are celebrating because I saw my medical oncologist on Wednesday and she delieverd some very good news! My tumor marker (CEA) has gone from 189 to 62! The normal person would register a 32 so I am SOOOO headed in the right direction! My 15 days of brain radiation ends on Tuesday so we will celebrate that as well!

I started my Xeloda again yesterday. My doctor and I discussed some ways to better deal with the side effects and so far they seem to be working! My radiation side effects haven't been that bad. My head is burnt, my mouth is dry and my hair is pretty much gone. Last time I just shaved it, but this time my scalp is much to tender for that. There was something oddly cathartic about standing in the back yard, rubbing my hands through my hair and watching it all float away on the breeze.

I have decided that life is way to unpredictable and busy to spend too much time worrying about things like side effects. This week some very good friends of ours lost their father to a sudden heart attack. I can't in a million years imagine how they must be feeling so if you have a few minutes, I would really appreciate a quick prayer for them as they go through the grieving process. Life is just way too short and very fragile. And it is so important to enjoy each day.... celebrate all those little victories while the sun is shining.

The Shoe

When my cancer came back in 2008, my oncologist gave Brad and I some advice. She said, "Now that you are stage 4, you need to think about the things you want to do and do them. Don't wait and say you will do them next year." Shortly after that doctors visit, I told Brad I really wanted to take the kids to Disney. It took almost a year, but we saved, studied and planned and made the trip happen. At the time Trent was five and Ian was two. In a perfect world, I would have waited until they were a little older, but it turned out all right and we had a great time!

A couple of days ago I unearthed the scrap book I made from our Disney trip. The boys and I huddled in bed looking at the pictures and talking about our wonderful memories we made. When we got to the end of the book, Trent motioned to the very back which has a picture of a shoe with writing on it. I had totally forgotten the shoe story, but it made me laugh as I read it to them. The story on the shoe said:

'When Brad looked at this scrap book he pointed out that one key story had yet to be told. The story consists of a shoe, a hotel safe, two little boys, and one security guard. Our first morning Brad tried to lock the laptop in the room safe, but couldn't get the door to open. So, the second morning when I saw that Ian had opened the safe my only thoughts were of what a bright two-year-old he must be. Both boys then huddled around the safe while Brad and I finished getting everything ready for the day. Once we were dressed, the backpacks were packed and the room straightened we asked the boys to put on their shoes. That is when Trents started laughing and said, "Ian put his shoe in the safe and closed it, that means he can't go." Upon further investigation, we discovered that Ian was FRAMED! To add insult to injury, clever Trent had locked not Ian's, but his OWN shoe in the safe. It quickly became the scene of chaos. Trent sobbing that he was going to be left behind, Brad yelling about how we can't take the boys anywhere, and Ian with both shoes, jacket and backpack on repeating, "I ready to go now." We had to wait about 10 minutes for the stoic security guard to come and open the safe. That's when I could finally start laughing.'

A LONG distance call

My mom and I went through our phases throughout life, just as I would guess most mothers and daughters do. As I matured and grew we became what I considered best friends in my 20's. When I lived in Charleston, we talked several times a day on the phone. When I moved back to Martinsburg and long distance calls were no longer an issue, we talked all the time. Dad and my brothers used to tease us about our frequent calls so much that I started keeping track. The average was five calls a day. I have no idea what we had to talk about so frequently, but I do wonder if she were here today if I would have to 'up' my texting plan. When I was traveling and she was sick, I would call her in the morning before class, when I dismissed the class for lunch, and at at least once in the evening before I went to bed. It was just what we did.

My mom died on December 13, 2002. Trent was born on June 14, 2003. Looking back on my life prior to then, I believe they were the most profound events with the largest impact on me. I still think about how close they were to meeting each other. I will never forget the warm day in April 2004 when Trent took his first step in our family room. I grabbed the cordless phone and hit the talk button before I realized what I was doing. We had experienced so many of his 'firsts' that year, but it was something about him walking that made me grab that phone. I slowly put it down with a smile.

In the years since her death I realize she has been with me many times, but it isn't the same as being able to pick up the phone. We never shared a Mother's Day and I feel like I should have made a bigger deal out of the day when she was here. I hope she knew how much our entire family appreciated her.

Tomorrow Brad is cooking a big meal and our families are coming over to celebrate all the 'mothers' in our lives. So, to everyone who has lost their mother, is celebrating with their mother, is a mother, or serves as a mother figure to someone...I hope you have a wonderful Mother's Day!

Wednesday...the beginning AND the end...

This morning dad and I traveled to Johns Hopkins to review my most recent brain MRI with my radiation oncologist who had treated me after my brain tumor. The findings weren't too favorable this time. The membrane or 'saran wrap' around my brain is more swollen this time indicating that the cancer has spread. Unfortunatley the chemotherapy is not very effective against this kind of metastasis so she recommends whole brain radiation. I quickly shot out a few questions about this radiation, but I was a little unorganized since I wasn't really expecting news like this. Whole brain is a daily radiation and she recommended seeing my radiation oncologist here in Martinsburg for treatment. That worked well since I was due at his office at 4pm for shoulder radiation.

So, good old Doctor Kiggundu has scheduled me for whole brain radiation setup tomorrow afternoon. I have a list of questions for him. I do know that I will have severe fatigue, get another wonderful mask, and will lose my hair. But truthfully, I am more interested in driving restrictions. So, tonight I am headed outside to hang out with the boys and tomorrow I am going to work. And Wednesday will mark the end of my shoulder radiation and the beginning of my whole brain radiation. I can't believe I just bought a giant new bottle of shampoo. Dang!

Time With Trent

As I get used to the new side effects, I am finding that mornings tend to be the worst, they are random and there is little notice when the morning is going to go downhill. A few weeks ago, I got out of bed and knew I wasn’t feeling the best. I managed to get myself ready, got the boys up, and the cereal bowls on the table before I started getting sick…really sick. As I was starting to think about how I would get Trent to school on time, I heard him in the kitchen. He poured the cereal and milk, got the spoons, and made chocolate milk for both he and Ian. After they ate he fed the dogs and played Simon Says with Ian (a common trick we use to hurry him along when he gets dressed.) I sat in the chair and helped him put toothpaste on the toothbrushes then he helped me put on my socks. He put everything in his book bag, put his shoes on, and got his jacket. Then he turned to me and said, “Mom, I really want to go to school with my friends, but if you need me to stay here with you I can.” I could see the worry in his face and it reminded me of the days that I was in the hospital. I took a deep breath and told him I was already feeling better and had sent a text to Pappy and he was taking Ian for the afternoon so I could take a nap. I guaranteed that by the time school was over I would be good as new! Then I crossed my fingers in hopes that I wasn’t telling him a big fat lie!!

On the way to school I realized that, without the help of my 7-year-old, I would not have made it out the door that morning. We weren’t even late for school. And, as I watched the other kids get out of their cars, I wondered how many of the first graders had taken care of their mom and brother that morning. There were a lot of things I thought about that morning and I decided that it was time that I sat down with Trent and had a very frank discussion about my disease. It is a conversation I have been dreading since he was four months old.

This week Trent is on spring break and on Tuesday we dropped Ian off at preschool and I took Trent to breakfast. It dawned on me that I don’t make time for the two of us to spend together, so this is going to be the first of many outings for Trent and me. Although I consider our conversation private, I was struck by some of his questions and some of his ideas. Maybe he will be the one who unlocks the mystery of cancer one day. Sometimes he seems so grown up. I do feel guilty because I am not the mom that I thought I would be when I had children, but I realized that this is his normal and he doesn’t know any different. He is used to the fact that his mom spends all kinds of time at the doctor’s office and he doesn’t realize that other kids don’t sit in the phlebotomy lab and wait for mom’s blood draws. I know it scared him when I was in the hospital and it bothered him when I couldn’t drive and when I was in a wheelchair. But he is brave and he is strong. He is carrying a lot of weight on those seven-year-old shoulders. And, even if he was the best athlete in the area with the top grades, I couldn’t be more proud of him.

Made it through the first 14 days!

Last night I finished off the Xeloda for the first 14 days of my 21 day cycle! So I am now on my 7 days off and then will start another 14 day cycle. I don't really think anyone wants to hear the details, but I am having some stomach issues and fatigue. Mentally, my biggest issues with these side effects is that I haven't really figured out a pattern. After over seven years of cancer drugs, I know to look for the patterns and work around them. So far all I have figured out is that mornings are the worst and I never really know until I wake up how I will feel for that day. This makes planning a little tricky!

I saw my doctor this week and we discussed my side effects. I really like her, but she was somewhat of a killjoy. I thought my seven days off would be like a vacation, but she said that some side effects don't even start to show up until the seven day break. Then she told me that the side effects tend to accumulate and get worse as you go through the cycles. Bummer. But, she did say if my stomach issues continue, she will adjust my dosage so that it is more tolerable. This is common for this drug and I have had to have d0sage adjustments with drugs before. They tend to base the 'standard' drug dosages on body surface area and I am a big girl with a very low tolerance for drugs.

I also started radiation on my shoulder yesterday. This has been something that has bothered me since my surgery in November and was irritated by the use of crutches, the walker, and the cane. There have just been so many other issues to deal with that this was on the back burner for a while. I have pretty much lost the use of the arm and have gotten tired of trying to put mascara on with my left hand. I will have ten days of radiation on the shoulder and hope to have it working again in no time! If this radiation works as well as that on my pelvis, I should be in great shape as I am now walking independently!

So, for now I am going to try to enjoy my afternoons, get through my mornings, and concentrate on some fun things we have going on this weekend!! We are having a fun family Easter weekend! If the weather cooperates, Trent will participate in baseball opening ceremonies and will play his first baseball game on Saturday!

Thank you to everyone for so generously donating to my Relay for Life Team. I have fallen behind on my thank-yous, but I do appreciate all your support and you will be hearing from me soon! Have a Happy Easter!!!

Hummingbird Rescue!

We live on a wooded lot and get a lot of chances to observe nature. The boys have bug boxes for caterpillars (which sometimes do make their cocoons and turn into butterflies). We watch the deer and watch robin eggs hatch in my hanging baskets. Each year we have several hummingbirds that come on a daily basis to enjoy my coral bells, petunia waves and, of course, our hummingbird feeders. Our birds aren’t afraid of us as they have a daily time that they visit and if I happen to be gardening then, they just work around me. The picture is from last fall and I was just sitting on the deck with a regular digital camera.

At least once each summer though, one of these small birds ends up stuck in the garage. We try to have a butterfly net on hand for such occasions so we can catch and release them. Last summer when Brad brought the boys home from their day, they found a poor hummingbird in the garage. We suspect he got trapped the night before and wasn’t able to escape when we closed up for the night and then left in the morning. Brad caught the bird, but when he got him out of the net, the bird just went limp. Trying to think quickly, and with both boys watching, Brad sent Trent inside for a glass of sweet tea. Trent returned with a tall glass of tea complete with lots of ice cubes. (I guess our literal thinker figured Brad was going to enjoy a refreshing glass while contemplating what to do with the bird.) Brad fished out some of the ice, turned the bird over and stuck his beak into the glass. He said in seconds the birds tongue came out of his beak and he started drinking the tea. He pulled the bird out for a breather then stuck his little beak back into the glass for another drink. Suddenly, the hummingbird perked up and when Brad loosened his grip, he flew away.

When I got home from work, the boys were so excited to tell me about their big rescue! We hung our feeder this week and the boys started with, “hey mom, do you remember the time the hummingbird drank the tea?”

Oh how I have aged him!

Today is Brad's 37th birthday! I can remember my mom saying that her gray hairs were well-earned, given to her slowly by her children. I must say that I'm pretty sure that I have given Brad cause to have a few gray hairs of his own.

It is true that life comes with its fair share of pressures and responsibilities for everyone, but over the last seven years I feel like we have weathered a lot together. Growing up is hard, running a household is hard, raising kids is hard, keeping up with things like jobs and bills is hard, and marriage is a lot of work. We aren't always laughing and sometimes we just flat out tick each other off, but when push comes to shove I know he always has my back. I tease him about marrying a lemon like me on occassion and he just laughs and we go on!

Who would have guessed when I was in seventh grade at St. Joseph Grade School making eyes at the tall boy in eighth grade that I would be watching him blow out the candles today! Happy Birthday!