I Almost Forgot About Relay

Sorry about the flood of messages today but I just realized I forgot to post about Relay For Life in my last update. I guess I'm having a better head day than I realized. :)

I am again doing Relay For Life this year. It is on June 17th at 6 PM and goes until June 18th at 6 AM. I hope to see many of you there.

There is a Relay For Life "all you can eat" Breakfast Sunday, May 15th (This Sunday) at the Lincoln College Cafeteria in Lincoln, Illinois from 9 AM - 1 PM. You can get your tickets from me Adults - $8 or children under 12 - $4. If we can't get together before Sunday you can also pay at the door. The College puts out a beautiful spread for breakfast and it was delicious last year so I'm sure it will be this year as well. There will also be raffle items if you are interested. All proceeds go to benefit Logan County Relay For Life and if you buy your tickets from me it counts towards my fundraising goal.

I know several of you have already donated to me this year. If you would like to donate to my efforts this year to help towards an end to cancer you can donate on my page: Relay Donations

The American Cancer Society isn't just about research but also about helping cancer patients while they go through treatment. All donations are appreciated and with any luck we will be able to prevent and/or cure cancer in our lifetimes.

Note that the Relay Link on my blog does not work properly.

Please Support Relay For Life!!!

Let's face it, there are not many people that have not had cancer affect them in some way. Whether it is watching from the sidelines, caring for a friend or loved one, or fighting it ourselves we have all been touched by cancer in our lives.

Cancer doesn't care how old you are, the state of the economy, your race, religion, whether you have a job or not, have the money or insurance to pay for treatments, or the ability to take care of your family while you undergo treatment. It affects everyone equally and without prejudice. Isn't it time we start evening the odds a bit and put cancer in its place?

If you've followed my blog you'll have met a couple of the children whose lives were taken too soon by this demon. King Julian and Coleman have been an inspiration to me as I undertake my own journey. Should a 4 year old have to face this? The simple answer is no. However, there's so much yet to be done.

The American Cancer Society leads the battle against cancer at every level along the way. They tackle it at the root by investigating the causes of cancer and raising awareness on ways to prevent it. They give resources, information, and support to those that have been diagnosed with cancer. Furthermore, they grant research money to those that may be on the breakthrough of finally finding the cure for cancer. They can't do it alone. It takes the support from each and every one of us to help them reach these goals.

The Relay For Life is a magical event especially for those that have had to face cancer head on. Relay is a time to come together to remember those we have lost, celebrate the victories we have made, and pledge to fight back against the beast that has taken so much from us. Most importantly, it gives HOPE to all of those in attendance that there will be a cure found so that more generations do not have to face this dastardly disease.

As a Survivor, I really find it hard to put into words what it means to me. The very thought that all of the people on the track are there to support the cause that is very important to me is touching beyond words. Being on the track with others that have fought cancer is an inspiration and keeps hope in my heart that I can also fight and beat this thing. It helps me remember that I am not alone. Not only do I have the support of friends and family, I have the support of complete strangers who I may or may not ever really know. It doesn't matter because we are all connected and it's instant friendship.

Some have asked me in the past why I support the American Cancer Society and Relay For Life when there are many organizations out there that are specifically geared towards brain cancer. Really the answer is quite simple... if all of the friends and family that have/had cancer had brain cancer then I might consider putting all of my efforts into the ABTA (American Brain Tumor Association). However, I've lost family to breast, lung, brain, blood, throat, and various other types of cancer. I have friends and family fighting breast, brain, joint, and blood cancer. I do support the ABTA by participating in some of their fundraisers. I just hold the Relay For Life close to my heart and I can see the impact that it has on others. I support their mission and I am honored to be a supporter of the ACS and I know that the ACS has had a hand in many of the treatments friends and family have used to extend their lives or beat cancer.

So tell me, can you afford to donate to Relay For Life and support my team so that others traveling this path can be given HOPE? Can you donate in remembrance of someone you loved that was taken away too soon from this beast? What about in celebration of someone you love that has fought cancer and is here to show all that it can be done? Perhaps you just wish to donate to help FIGHT BACK against cancer so that future generations can say "When I was a little one, cancer took the lives of many good people but that doesn't happen anymore." Wouldn't that be great?

How about it, can you donate $5, $10, $20 dollars to help put an end to cancer and support those that do have it? http://main.acsevents.org/goto/Amy_Relay

Thank you for your support!

The Month in Review... October

So I'm running behind again. I have no excuse other than I have been VERY busy and it's taken me 5 days to write this update. (I've had to change the numbers three separate times!!!)

• I am 16 months past the partial resection of my malignant brain tumor
• It has been 13 months since I completed external beam radiation
• It has been nearly 5 months since my first complex partial seizure and 28 days until I can drive again. YAY!!!!
  
• It has been 2 years and 2.5 months since my brain tumor was discovered

Medically - I haven't had a month with this much to update in the medical category in a long time. As many of you probably are already aware, my follow-up MRI on October 8th showed what appeared to be an increase in the area of enhancement in comparison to the MRI performed in July. This prompted my Neurologist to tell me I should seek the opinion of my NeuroSurgeon to get a "second opinion" on what was going on. Of course, my NeuroSurgeon was fired back in January so it was time to take action on a few of the doctors I had been looking into. It was actually quite simple logic on my part. I figured if you don't succeed with what is considered one of the best in Illinois, then you take it up a notch and you go to the best in the country. This is, of course, what sent us on a road trip two days before Halloween to Rochester, Minnesota which is the home of Mayo Clinic.

The Neurologists that I talked with were great. I really liked their philosophies, the fact they never hesitated to answer my questions, and that they actually agreed with me on some of my views about certain things. They agreed that I made the right decision to decline Temodar after surgery as well as that my last NeuroSurgeon really should have answered the questions that I asked. They were common questions actually of "very informed" patients and they were not unreasonable. They actually seemed quite concerned that he didn't answer these questions and I could tell they were making mental notes of this for future reference. (Questions that we referred to were, "Where was the cranial plate removed?" and "What percentage of the tumor was Grade Three?")

Anyway, in the end, I felt very comfortable with them and they collectively agreed that we were still in the 6 months - 2 year window where the most post-radiation change occurs and that there was not enough change to warrant starting me on any additional treatments as of yet. We all agreed we would schedule an 8 week MRI and we also discussed possibilities that would be available to us should there be concern in any of the upcoming MRIs, including working with my Neurologist back home to line up the correct team should further treatment be required.

While I was not as impressed with the NeuroSurgeon, he was straightforward, honest, and to the point so I couldn't have asked for anything more. He is better than all my previous NeuroSurgeons, except for the one I had originally chose to do my surgery, but then again, I'm not sure there is anyone that is as effective at communicating as he was. He gave us additional thoughts to ponder about my options for treatment should it be needed but he also was in agreement that there was not enough there at the moment to require action right now.

I did finally get a reply from my first NeuroSurgeons office but I am still waiting to receive the corrected documents so that I can send the information to my insurance for claims processing. Hopefully, before the end of the year, we can finally put this issue to rest. My Psychiatrist's office is still working on getting the claims properly submitted for my medication as well. We did, what is hopefully the last, submission of the claims to insurance this past week. "Behavioral issues resulting in trauma to the frontal lobes region of the brain." (or something like that)

And finally, I had a visit with my Radiation Oncologist yesterday and I have been OFFICIALLY RELEASED from his care!!!!! That means one less doctor I need to keep updated with. This is good news and truly shows the progress I've made.

I think that finally wraps up how things went in the medical arena for October.

Emotionally - It's been a roller coaster this past month. Not only was I dealing with the unknown questions about my tumor but now I'm trying to sort things out to deal with the upcoming shutdown of the plant I work at. Not been a good month but for the most part I've managed to keep relatively stable.

Mentally - Honestly, as crazy as things have been, I haven't been paying much attention to my mental functions other than I know it doesn't take much stimulation to exhaust me.

Physically - I think exhausted is the best word. I've been (successfully so far) fighting off bronchitis and sinus issues, an increase in the number of headaches, and some cases of insomnia of late. None of the three go together well when you are also more or less a "single" parent, dealing with several projects at work, trying to make decisions that affect you and your family's whole future, and just basically swamped with things you need to get done at home. Since John has been working the major hours (He has been putting in 30-50 hours of OVERTIME in each two week paycheck) the house has pretty much fallen apart. I get home an hour later than I did when I could drive so that by the time you get home, relax for a few minutes, eat supper, do dishes, throw in a load of laundry, and take a shower... it's way past bedtime. Soon enough we'll get back into our old routine again. I can't wait to get the ok to drive again. It's been a long 6 months. However, we are almost through it and there is no way I could have done it without my parents and the help of many friends. Mom, Dad, Andy, Robyn, Scott, Jamie, Michelle, Hillary, and everyone else who has given us rides where we have needed to be... THANK YOU!!!

Work - This earns its own topic category this month. Just before I went to Mayo, it was announced that my parent company is going to shut down our plant and move the product to Mexico. We do not have a definite time-line yet but there are several that have said that June-August is the estimated time-frame. I'm really not too worried about it. I have several options open to me and it's really going to be a matter of weighing which option is the best for me. There are both full-time and part-time options in my future and they both have their pros and cons. The good news is that John and I can live off of his salary if needed with the exception of what it would cost to have me added to his medical insurance. Therefore, I know that I just need to make enough money to cover the "fun extras" and my medical costs. I can't recalculate those numbers until his plan information is available in a few weeks but I think it can be met pretty easily if I can find either seasonal or part-time work. Might even be able to make it with money I can make with my own "business" by working on computers for people. I'd have to look into the headache that would be first. I will keep this issue posted after I know more but for now, I'm not too concerned with it. We have a solid savings and have already begun cutting back so regardless of what I choose, we will be ready.

Along with the site closing has come many new opportunities for me at work. For the first time in my career I have started "officially" leading a project. One of the projects is within my group of teammates and the other is at a higher level where it will be visible by a lot of people that are pretty high up in the company. I won't deny that I'm scared as hell about the higher level project. I'm not as confident in my abilities to lead projects as I might have once been. I can't deny that there is enough change in my mental capabilities that I'm not sure I'm fully capable. However, I don't back down from challenges and I'm not going to start now! I look forward to the challenge and I hope I'm both physically and mentally able to handle the projects. I figure, if nothing else, it will look good on the resume.

Family - John continues to work the crazy long hours. He's exhausted every night when he gets home and usually I see him long enough to direct him to where supper is and kiss him good night. Luckily, the weather has been decent for the last several days so the farmers are finally making some good progress in the fields. I'm hoping it will stay good long enough that they will be done before the Christmas holidays and therefore John will have no trouble taking his week off between Christmas and New Years like we always do.

My son is still struggling with attitude AND school. He's doing decent in the actual academics if he can just keep himself out of trouble. He's managed to get himself another day of "0" this quarter. I would have thought he would have learned last quarter when what should have been B's and C's ended up being D's. I know this summer/fall has been as hard on him as it has been on the rest of us and I really want to believe that is part of it. Hopefully, when we get back to a normal routine, he will start getting back to a little more normal.

Play - Haven't been doing a whole lot of play although I'll take this opportunity to talk a bit about our trip to Mayo and some of the things we did while there. I have to give them credit, they have made the area a really nice place for patients and their caregivers to be should the need arise. The buildings are beautiful, very well designed and thought out. Beautiful architecture, history around every corner, and really had more of a feeling of home than I ever dreamed a hospital/doctor's office could have. We enjoyed our time there even if it did rain most of it and yes we did have a bit of time for site-seeing. That Thursday night we decided to celebrate that they didn't feel there was any concern of yet and we ate at a fabulous restaurant not far from our hotel. It was definitely ritzier than anything I've ever been to but hey, we were celebrating! We had a great meal with fabulous staff and it really just made me feel wonderful. It was our splurge and after the 7.5 hour drive to get there, I think it was very deserved.

Oh, and we were able to enjoy a good ole A&W restaurant as well on the way home! It appears there are a lot more of them up that way than there are down here. I haven't been to one in ages. Nothing beats a good ole diet A&W and burger!

That's really all of the serious "play" we've been able to do. We didn't really get to do anything for Halloween since harvest was so crazy and I couldn't drive. I told John we'll have to make it up next year. JJ and I will do it without him if he's too busy! I haven't been to a good haunted house in some time so I'm WAY overdue and I've never made it to the Haunted Hayride so that's definitely on the list for next year even if there is a three hour wait!

We have missed the last few dances as well. Unfortunately, when John doesn't get home until 10 minutes before the dance is supposed to start, it makes it difficult to attend. There's a dance this weekend if he gets off in time but I'm not going to get my hopes up even if I'd love to be at this one because we've never danced to this Caller before.

Relay - Yes, the Relay season has started anew! I'm super excited about it now that I actually know what I am doing. I had the privilege of attending the Relay Academy this year and I've got tons of things floating through my mind about it. (More behind the scenes stuff than actual team stuff although some of that too.) I'm determined to have a full 15 person team this year! So, if anyone would like to join me, do let me know. You all know if you are in my area or not. ;)

Also at Academy, I was able to give my first "public speaking" presentation. I was asked to tell my story at the Survivor portion of the Academy. I loved doing it and I really hope that I'll have many more opportunities to speak. As you all know, I love to talk so it really comes naturally to me. I have already been asked to speak at one of the local Relays that I attended last year and I'm really excited about that. Now I have 9 months to think about it before I get to give it!!! I need to talk with them about what angle the want me to take though. Honestly, this is something I've thought about doing as a "side-profession". What more can you ask for than to spread the word about brain tumors/cancer, Relay For Life, the Fight of a Survivor, and just plain motivational speaking? It's something I would love to do so if you need someone to speak at something and you are looking at anything down one of these paths, let me know. I might just be available. :)

I will be putting up donation banners when I get it all sorted out so be on the lookout!

Don't ever say "I can't" always say "I will"!!!

Love ya all and many huggles!!!

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.

The Seizures Have Stabilized Now

After having between 30 and 40 simple partial seizures on Wednesday and only 9 on Thursday, I have not had a seizure since 9:30 on Thursday night!!! You don't realize how good something as simple as not having a seizure in 36 hours can be until you've dealt with them with high frequency for a few days.

Now my attention turns do other things. I need to get my son ready for camp and John and I will take him there Sunday evening. I am also doing final things for Relay. I have trees to finish, posters to make, packing to do, and of course the final team email to prepare and send. Monday I get to go get my partial fitted for my teeth and I'm hoping that I get to keep a set. We'll see how it turns out. I also have a graduation party tonight for my Harry Potter group Plano Hogwarts. I am the first ever graduate at the site and I'm throwing a huge party. There will also be a surprise but I can't tell you what that is or it wouldn't be a surprise.

Other than all that and hopefully no more seizures, I see the neurologist on Tuesday and I'm pretty sure there will be an MRI in the coming week. I will report what I find out after Tuesday. Friday is Relay For Life. If you are in the area, please come out and support us!!! I'd love to see many of you there. It's at Lincoln High School and it's from 6 PM til 6 AM! From 8 PM until 9 PM I will be square dancing as part of the entertainment for the night so for those that have not seen me dance, come on out and get a good laugh.

I am also hoping to attend our first square dance in several months Saturday night but it will completely depend on how tired I am following the all-nighter on Friday.

My First Ever Survivor Walk

On Saturday I attended a Relay for Life in a town local to where I grew up. I was a "member" of the team, although a rather inactive one. My primary goal was to get a feel for what Relay was all about before being a captain in my local Relay. I will say that it was a very special night for me.

The Relay was launched with the traditional Survivor Lap. This particular Relay was set up in a high school gymnasium so everyone crowded into the gym as the survivors took their lap. It felt good to be walking with the other survivors and the crowd was amazing as they gave round of applause. The second lap, we were joined by our caregivers. I squeezed John's hand tight as we made this lap. I think, in total, I made 55 laps that night. (I was feeling it the next day!)

Another part of the Relay that I found really special was the Luminaria. They had a screen set up at one end and all of the luminaria were "lit" and the screen scrolled all of those whom had luminarias as well as all of those that were survivors. It was quite emotional to see my name up on the screen with all of the other names of those who have walked the same path.

We only stayed until 1:30 AM for this one because of the very little time I'd have to make up my sleep. (This was on a Saturday night where my local Relay will be on a Friday night) If I don't get the opportunity to get enough sleep, not only am I at higher risk for seizures but I'm pretty much useless the next day. As much as I would have loved to stay the whole night, I knew it just wasn't possible for me to do.

It makes me even more excited for my local Relay. I can't wait to captain my team as we continue to raise money and awareness for the American Cancer Society.

Help Support Relay For Life

I’ve decided to take a stand and fight back against cancer by captaining a team in the American Cancer Society Relay For Life^® event right here in my community. Our team has pledged to raise $1000 to support the Society's mission to save lives and help people who have cancer. I'd love to reach that goal and be able to increase it. Remember every dollar counts when it comes to fighting cancer.

To steal my words straight from my Relay For Life Personal Page:

I Relay because I know that cancer doesn't care if you have a young child at home, have adequate health insurance, or are still in the prime of your life.

I Relay because I don't want to see any more children like Coleman, Julian, and Finn lose their childhood to cancer and earn their angel's wings way too early.

I Relay because I don't want my son and grandchildren to have to worry about losing their spouse, child, or parent to the beast we call cancer.

I Relay so that those that do have to travel this roller coaster have access to invaluable resources, support, and weapons in the fight against cancer.

I Relay because I want to see an end to cancer during my lifetime. Relay gives me the unique opportunity to celebrate the lives of those who have battled cancer, remember loved ones lost, and support the American Cancer Society’s lifesaving mission by fighting back against a disease that has already taken too much from too many families.

I Relay because on August 23, 2007 I had an MRI that was resultant of being hit in the face with a baseball while playing catch in the backyard with my son. The MRI changed my world forever. Five little words changed my life when I was told I had a "benign" brain tumor.

I Relay because in June of 2008, the surgery that was to remove my "benign" brain tumor revealed that I had a grade three Anaplastic Astrocytoma. Malignant. Brain Cancer.

I Relay because I don't want others to have to hear those five words, "You have a brain tumor."

I Relay for me, my family, my friends, and those I have never met that have struggled alongside me or someone they love who is dealing with cancer.

I won't be alone in my efforts. Relay For Life^® brings together more than 3.5 million people worldwide to:

CELEBRATE the lives of those who have battled cancer. The strength of survivors inspires others to continue to fight.

REMEMBER loved ones lost to the disease. At Relay, people who have walked alongside people battling cancer can grieve and find healing.

FIGHT BACK. We Relay because we have been touched by cancer and desperately want to put an end to the disease.

I hope you will support me in this important cause by making a secure, tax-deductible donation online.

Whatever you can give will help - it all adds up! I greatly appreciate your support and will keep you posted on my progress.

Huggles,

Amy

Captaining Relay For Life Team

Wow, I can't believe it's been over a week since I posted. I must have really fallen off the update wagon there!!! Sorry about that. Anyway, today I come to you after having some soul searching over the past few weeks and God working over time to make sure I knew I was in the right direction.

Since I'm hoping to go on a six month schedule following my February MRI, I feel now is the time I can relax a bit and get more involved with advocacy and awareness of cancer and brain research. Well, the first of these attempts was presented to me on Monday when I was asked to become a Team Captain for the American Cancer Society's Relay of Life. I attended a meeting on Wednesday about it and I'm really excited about it. I am working on creating a team for it and I've had a few volunteers already but I need quite a few more. You will probably see a lot of posts about it on here in the coming weeks as I try to figure out what in the world I am doing. Don't worry, I hope to also figure out ways for all of you to contribute as well if you wish.

So, that's what I've been up to the past week. Hope all is going well. *huggles*