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!