An Update from Relay Weekend

Wow, this weekend has been wild, crazy, and a lot of fun!

I'll post a full fledged monthly update some time next week. For now I just want to talk about the weekend and how Relay went.

Friday afternoon around noon, we began setting up our campsite for the Relay at Lincoln High School. It was crazy trying to get everything done and the plan for having Relay inside wasn't fully figured out so there was quite a learning curve and things had to be moved around a few times at the campsite. We were able to finish setting up before the Survivor's Dinner at 4:30 with the exception of some minor details. At 4:30, I went with my Grandma and her friend Ida to the survivor's dinner. We are all three survivors. Of course, you know my story. My Grandma had a tracheotomy 12 years ago from throat cancer and her friend had breast cancer around the same time. The meal was catered by John Guzzardo and it was absolutely fabulous.

We had walking tacos we were selling throughout the night thanks to a very generous donation by my cousin (he owns Kicks and a few Subways). They were a pretty good hit although it would have been great to sell 100 more or so! At 6, the Relay started with the team lap and the Survivor's lap. It's really quite overwhelming when you walk the survivor's lap. Everyone claps as you walk the track and it really makes you realize that THIS is what Relay is about. Celebrating those still with us and later in the luminaria presentation, remembering those we've lost.

Around 8:30 the square dancers were on the floor until the luminaria event began at 9. We were supposed to start at 8 but the auction ran longer than they expected. It felt good being out there dancing again. We've been so busy with Relay and stuff that we've only been dancing twice all year. I wish to thank all of the square dancers that came out to support Relay and me. It really meant a lot to me to see such a wonderful turnout.

At 9, we started off the luminaria lighting with some words/stories from some of us touched by cancer. I was privileged to be one of the speakers at this and I hope that my speech helped drive home some of the messages that the American Cancer Society wishes to send about cancer. At some point in the future, I will post what my speech was so you all can read it. It's actually quite funny. I told the chair that she needs to be careful when she sends out a speech for something, you never give a writer the permission to embellish. LOL I basically rewrote the entire thing but the message was still there. She said she loved it and I did get some applause at the end of my part. It helps when you have one of the more exciting parts and are able to end it with a shouting chant of "FIGHT BACK".

The rest of the night was filled with varying activities, specialty laps, etc. It really started dying down around midnight and continued throughout the remainder of the night. However, John and I stayed all night and were there to release the balloons at 6 AM. I really found it to be awesome and I loved captaining the team this year. We were awarded the silver team award for the money we raised and we finished second of all the teams before putting in the fundraisers from Relay.

John and I both crashed until around 1:30 PM and we agreed we would go dancing Saturday night. When I took my shower, I realized that a fall I took early in the day of Relay, did quite the number on my ankle. It was quite purple and John almost wouldn't let me dance. I'm glad he changed his mind though after I convinced him it really doesn't hurt and that it's probably just bruised.

We went dancing Saturday night. I think we were able to get in three tips and it felt good to be back on the dance floor. I didn't realize how much I had missed dance. It really is one of the best date nights you can have and there are a lot of very wonderful people that square dance as well.

Today is Father's Day so Happy Father's Day to all of you dads out there!!! We are getting ready to go grocery shopping and then over to my parents to unload the trailer from all the Relay stuff we shoved in there Saturday morning. I am very sore today from the knees down. I think I should have stretched out better or need to get back to walking nightly so that I don't have this problem. :)

It's been over a week now since my last seizure so I do believe that we've got the right dosage of meds going into my system now. Now I just have to wait out the 6 months grounding from driving and I'll be back to normal.

Well, I've got to wrap this up. I'm sure there will be more updates now that Relay is over and I have that time back.

We Had a Great Time

Last night we got to dance and I had a fabulous time. Dancing really is food for the soul. :)

We ended up having to sit out a few extra dances because I couldn't breathe from my stuffed up nose but we had a ball on the dances we did do. I also enjoyed meeting up with my dancing friends. They are all such great people and we have so much fun. Besides, dance is one of the few places I can go, be completely me, and forget everything else going on in my life for a few hours. Sometimes dance can give me a lot of strange feelings because of my age. You see, I am the youngest adult dancer in our club. (my son is the youngest dancer) I have always gotten along with those much older than me and honestly, most the time I fit in better with older generations. So I get along with everyone in dance very well. So most times we are equals, they are just older and wiser equals. However, since my diagnosis, they have become support and strength, they are almost like lots of Grandparents supporting me through the time. It feels good to have 60+ Grandparents.

Anyway, we had a great time and I hope to do it a lot in the next few weeks. I really want to get back into the swing of things. (no pun intended) Well, that's good for now. I just wanted to check in since I didn't yesterday.

Care Team and Square Dancing

Ok, so that probably doesn't make a lot of sense and no they are not related. LOL

Today I spoke with my family physician and updated him on what is going on and what my current thoughts and plans are. He felt I was doing all of the right things. I also asked him to be the liaison between my local and remote team. Since I am considering treatment at a facility that is 3.5 hours away, it isn't feasible for me to have all of my MRIs, scans, etc up there. Because of this I need a few members of my team here locally. He agreed to be my liaison down here so now my team is mostly in control. He also agreed that the neurologist I picked out for down here would be fabulous. Therefore, it looks like I'm set to go with whatever road this tumor takes me. Now all I have to do is let my local neurosurgeon know that I have found another doctor to take over my care. I don't handle confrontations of this type well so it will be a character building moment. (Yes this is a huge character flaw of mine and my husband will be the first to acknowledge it!!!)

Second thing on the agenda, after a few hour nap, is square dancing this evening. It's been a few weeks since we went dancing so it should be fun to get back into the swing of things. (no pun intended) I really love square dancing and we need to start doing it more often if I am to meet my goal of shedding a few pounds. I figure that I no longer have the excuse that I don't want to lose a ton of weight only to gain it all back with pregnancy. Besides, now I have an incentive since the less weight I have, the easier my recovery will be when I choose to do the open biopsy.

Speaking of open biopsy. Yes, I have decided I will do it but the big question mark is when. Unless something shows up in an MRI, the soonest it will be is next June. Even then, I reserve the right until the day of surgery to change my mind so... don't count on it!!!

Alright, that's it for now. I have been quietly working on some legal documents that are of concern for the future but I will fill you all in on that as I finish each document. I'm hoping maybe my entries on it will convince some of you to work on your own important paperwork.

Beginnings - Small Town News Spreads Quickly

Knowing that I live in a small town, work in a small company, and have many friends in and around all those areas, I knew that the next few days would be spent telling the story many times. Was this necessary? Possibly not, but I wanted those close to me to hear the truth and not something through the grapevine.

Of course, as soon as I left the doctor, I tried to catch my boss and immediate co-workers before they left for the day. I was able to get a hold of everyone and they were all relieved. Then I called my Mom and told her what was going on. I will just say that my Mom and I have very different views on doctors but for the most part the conversation went well. I continued with my phone spree (John was driving) and called my best friend and left a message on my chiropractor's voice mail to let them both know the good news. Finally, we got towards home and swung by to pick up my son at the sitters. I let her know that everything was good and you could see the visible relief on her face. (I had to tell her prior because we weren't certain if we'd be on time to pick him up.)

We had plans already for this night. There was a "going-away" party for one of the ladies at my hubby's work so we didn't have much time to think about things that evening until we found ourselves in the car again. However, I did find the time to sit my son down and tell him what was going on. He took it like a 10 year old. I think he heard the news that I was going to be ok and pretty much ignored the rest of it. He did ask questions as the night moved on but really, what is there to talk about with it?

Although I really didn't want to say too much at the party, several had noticed John's "absence from work" during busy season and some had noticed one or both of our vehicles in the driveway at odd times so it really wasn't easy to keep it quiet. Eventually, I just gave in and I ended up telling most of his co-workers that was at the party. They took it well, things were fine, and they all gave offerings of support and prayers. At least now if John received an "urgent" call or had to leave unexpectedly, they knew what was going on.

I proceeded to call and "floor" some of my friends and learned quickly to start off conversations about it like so: "Listen to everything I say before you react," and end them with: "Remember, anything you read online is based on someone having symptoms that led to the diagnosis." However, I think it was a good thing because it reminded us all that life is short and we really shouldn't have let ourselves stray so far apart. Maybe this will be a new chapter in friendships and not just my life.

Finally, I called my baby brother (ok so he's 23 and taller than me) and let him know what was going on. He took it well, considering, and I had only shocked him enough he didn't even bother to tell me he had a new car!!! That's another story in its entirety, however.

We had a busy weekend planned with a square dances on both Saturday and Sunday night. I was both looking forward to our first square dance in well over a month and nervous about it because I knew questions would be asked. Now you have to understand the relationship we have with our fellow square dancers. We have danced for a little over a year and we are the youngest couple in our area. However, we love square dancing and don't let age or anything else stand between us having a great time with our square dance family. We have made A LOT of friends in square dancing and I really do see them as family. That's why the absence of us for over a month was going to raise concerns and sure enough, more than one mentioned that they had been asking about us.

Yes, I had only just found out about the brain tumor but the facial numbness that led up to the MRI had gone on for six weeks and it made me uneasy and afraid I'd lose my balance, so we refrained from dancing during that time as well. Whether I liked it or not, the two were linked and one couldn't calmly be explained without the other.

After the very first dance, I had the opportunity to speak with the wife of our local caller (the person that does the singing and calls during a dance). They are a wonderful couple that truly helped bring us into the square dancing world and made us fall in love with it. She was shocked but confident that we would be ok. As was everyone else that we talked to that evening. Some shared stories of their own battles with similar things and that was very encouraging. Several more people were added to my prayer list over the weekend as much more than a general "Please take care of all my friends".

He probably doesn't realize it, but the most touching response I received was from our local caller. He had been "on stage" when I told his wife what was going on and apparently some time throughout the night she told him what was going on. He came up to me, gave me a big hug, and said "I'm so sorry kiddo." It probably didn't seem like much to him, but it literally touched me to my very soul and gave me a new sense of strength. Sometimes the little things make the biggest impact.

I think that was the major events of that first weekend. I believe it might have been a good thing that I was so caught up in other activities but at the same time this prevented some of the details from truly sinking in. I was going to be ok. That was all that was really sinking at the time.