Thursday, November 26, 2009

What I Am Thankful For!

Looking at myself, sitting here today, I am thankful for so much in my life. I am thankful for each and every day that I spend enjoying life with my family and friends. This has been a tough year for my family but we have never failed at seeing what we are thankful for.

I am thankful for my husband, whom despite working a lot of very long, hard hours is able to try to keep up here at home as well. He has barely had a day off since I had my seizure in June and has had to be my chauffeur on numerous occasions instead of resting when he is off. He rarely complains about it and does what he can. I always knew that he was my Knight in Shining Armor but he has proven that this year.

Then you have my little savior, my son. Although he's not very little anymore. He is now credited with possibly saving my life not once, but twice. He is one of the most kind, considerate, and compassionate young men I have ever met. While he does get into trouble, is a typical teen, and struggles with school; he is always there for me and the family when it is needed most. I truly wish I could be half the mom he truly deserves for no child should have to take care of their mom but it should be the other way around. I am very thankful for him!

As I said, this year has been very trying for us and I could not write a post of thanks without thanking all of those that have assisted us in this journey. For everyone that gave my son or I rides, offered a helping hand, or just was there to talk... We are so thankful for you. My parents have been a huge help getting me to and from work on a daily basis and I am grateful they live close enough to help. My co-workers Robyn and Scott have never hesitated to give me a ride to doctor's appointments when needed, it would have been a nightmare without you. My little brother sometimes even came to spend the night at my house to give me rides when needed. I appreciate that so much. Then you have all the friends like Jamie who would fill in when it was needed. This year would have been horrendous without all of you and I am so thankful for each and every one of you!

I am thankful for all of my friends in real life and online. All of those that have just the right words to say when I'm feeling down or who just know when I need to talk. You lift my spirits when I am ready to cave and you make me laugh when it is most needed. You help me get away when I need a break from reality or give me a new way of looking at things. You guys are my angels and you know who you are.

I am thankful for finally finding a set of doctors that I can trust and communicate with. I finally feel like I'm in all the right hands and that I'm not going to be left out in the dust. Without them, I would have very little hope of a future, but thankfully they are with me now and part of my team.

Lastly, I am thankful for being able to spend time with my family, in a home that I own, with enough money to take care of my needs and even some of my wants, and, of course, to be happy, loved, and able to enjoy the fun things in life even if it does leave me tired. I am thankful for the life I am living and I hope there are many more years to come!

OOPS, of course, I am thankful for all of you my wonderful readers!!!


Tuesday, November 24, 2009

Trying to Keep On Track

Something I am struggling with right now at this very moment is keeping on track. There's several factors affecting it but I know that the mass majority of it is the pure and simple change and fatigue my brain is currently under.

I have found that I have to make lists, not just normal lists of "do the laundry", "cook supper", etc. But detailed lists like, "get the clothes from the bedroom", "sort laundry", "put laundry in the wash", etc. It's frustrating but it's easier than backtracking a dozen times just to get through the process of starting a load of laundry. I do not process sequences well anymore and when I'm tired it is even worse.

I am also fighting motivation issues. Despite having all of these things listed out, I have to fight myself to do just one piece of them. When I do get motivated, I find that I tire easily and that I'm exhausted for days afterwards. This is what I am currently suffering from. I had a really good day on Sunday and I got a lot of things done, however, this week I've been near dead at work. I've barely kept my eyes open and by the time I get home, all I want to do is sleep. Luckily, this is my last day of work this week and I'll get to stay home and rest tomorrow.

When you have to keep track of everything from work, to home, to your son's school, to medical bills, to things that need done... it's hard on anyone but it's near impossible when you are also fighting a healing and aching brain.

Monday, November 23, 2009

The Things You Don't See

In talking with one of my online support groups recently, a very important topic in the brain tumor/cancer community came up. Perhaps one of the hardest things we as patients have to deal with is helping others understand our day-to-day struggles. After the surgery is done, the hair grows back, and the visible signs of the tumor are gone those around us can often forget that there is anything wrong with us. They don't see the cycle of worry, fatigue, cognitive difficulties, anxiety, depression, and sorrow that we live with on a daily basis.

The brain is a very sensitive organ and when it is affected, it affects every part of your entire body. While we might look normal on the outside and maybe even act normal at times, on the inside we are often facing many things we don't quite understand or know how to deal with. Tasks that once came so easily to us, we now have to struggle to do. We worry about what the next scan will show and that each new "tremor" or change in ourselves can be the beast returning. While we try not to focus on statistics, we are aware of them and that there is no known cure just lots of hopeful ideas. Everything we do is a struggle and when we have our good days we often pay for them with days of fatigue because our bodies and brains no longer recover as they once did. I often find that I either have a good "brain" day or a good "physical" day but rarely do I get both in the same day. Doing everyday tasks like balancing the checkbook and paying bills can be the mental equivalent to running a marathon without first training for it.

Finally, while many of us know that we have to accept a "new normal" when we enter surgery, radiation, chemo, etc... just as you grieve for a lost loved one, we sometimes grieve for the piece of ourself that we have lost. Along with this comes depression, anxiety, and frustration. While we all know that life is never the same after a brain tumor diagnosis, it isn't always something that we want to accept but we have no choice. While some types of cancer or even illnesses can be cured or handled by medication or surgery, these are only temporary solutions in brain cancer. I've heard it said many times with other cancers, "Give me a year of your life and you can go on with the rest of your life," this isn't so with us.

Some of the people close to me would say, "but you are always upbeat and you never show any of this." Yes, you are right. I am perhaps a master of wearing a mask over my emotions. I find it easier to hide my feelings and struggles and discuss the superficial things in my life that I do to show my emotions and talk about what is really going on. It's easy to get caught up in the web of "no one can understand unless they've walked in my shoes." I'm hoping that with the change of my blog, this is something I can slowly help change.

Perhaps the hardest thing to openly deal with is the knowledge that there is no cure. Once diagnosed, we have constant reminders of this for the rest of our lives. It will perhaps never go away entirely. It's hard when we attempt to deal with the issues we know need to be dealt with. The things that everyone should deal with at some point in time to make things easier on their family when their day comes. However, when someone in the younger years aims to do the same thing, we don't always get a lot of support. We hear "death is inevitable and it can happen to anyone at any time." Isn't that all the more reason to start thinking about arrangements when you are younger because... you never know? One thing that must always be remembered... While everyone will die some day and no one knows when that time will come, those dealing with brain cancer not only knows this but they also know their days are numbered and no one has bothered to tell them the number.

Sunday, November 22, 2009

I Have Failed My Readers

After having some discussions in one of my support groups recently, I realized something about how my blog has changed from its original intention. My goal was to give the uncensored journey of dealing with a brain tumor in order to keep family and friends up-to-date, give valuable information and insight to those who must also take this journey, and to help others understand just what really happens along the way. Of course, the goal of all bloggers is to have people read their blog.

Ironically enough, my blog started doing these things and that's when a process that I didn't even realize took place. My nature is to protect those I care about from harm and unpleasant situations. As more people began reading my blog, I started thinking more about what they are reading and unconsciously began protecting my blog and not saying everything that really should be said. I even found myself at one point, creating a private blog on another site to get the bitter truth off my chest without taking any chances of someone reading it and suddenly growing severely concerned. In other words, I began blogging about the things you WANTED to know and not the things you NEEDED to know.

I am not going to vow to write every feeling I have, I don't have time for that. Nor am I going to even promise to write daily. However, I do promise that I will begin writing the full story and not pulling any punches along the way. Therefore, if you can not handle reading about my break-downs, issues, and the cold hard facts... I've enjoyed having you as a reader but I ask you to not read my blog in the future. Brain cancer is not an easy journey and often things are happening that only the survivor and their closest caregivers know about. Sometimes not even the caregiver knows what is going on. Therefore, I will begin my effort to start vocalizing these things that so few ever really understand unless they themselves are going through it.

So finally, I shall close the inadequate chapter of my blog and open a new one. I hope my Readers follow along with me on this journey.

"We must never forget that the highest appreciation is not to utter words, but to live by them." - John Fitzgerald Kennedy

Friday, November 13, 2009

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!!!