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.

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

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!!!

Good News from Mayo Clinic

Well, we arrived safely at Mayo and saw the Neurologist. I LOVE HIM!!! He was very upfront with us, answered every question we had, and has a lot of the same philosophy as John and I. I think all the turmoil with the previous ones was so that we could finally find someone we are completely comfortable with.

Ok, ok... so what did they say? Well, there was definitely change in the June MRI and there is a good possibility of it in the October MRI. However, we are still in the 6 - 18 month window that changes occur post radiation and any changes are not significant at this time. So, we will have another MRI in Springfield at the 8 week mark and we will continue working with the doctors at Mayo to determine the best path of treatment. Should any of the future MRIs show change, I will most likely be starting Temodar but he doesn't feel it is to my benefit to start it at this time.

For those that have no idea what I'm talking about, they do not believe it is anything to be concerned about at this time and therefore we will continue to watch it. This is good news!!!

Love ya all and huggles from Minnesota!

-- Amy (Now it's off to find some food)

Adding Just One More Stressor

Today they announced at work that they will be closing the plant I work at sometime in the next year. I would be lying if I said I was surprised. We have all felt for some time that our jobs were already on borrowed time. After they announced the closure of our sister plant earlier in the year, we were even more certain it was just a matter of time for us as well.

We don't have a time frame nor do I know what this means for me. Things can go in several different ways and we'll just have to wait and see. In the meantime, I am preparing what is needed to ensure that my family is in good position regardless of what happens with my job. We are fortunate in that we can live off of John's salary and it would just be my medical expenses that would cause issue.

We'll have to wait and see what path we must go on. From what I am gathering from those making the decisions, God is truly the only one that knows what will take place at this time. We are strictly along for the ride until which time the pieces fall together. As I said, I know that we will come out stronger in the end and that we will come out on top just as we always have. Everything happens for a reason.

Results from Three Month MRI

Here's the latest from the brain front...

October 8th I had my three month follow-up MRI.  My Neurologist gave me the results saying that he didn't feel qualified to diagnose what he was seeing and therefore wanted me to see my NeuroSurgeon.  Of course, my NeuroSurgeon was formally fired back in January after the fiasco that occurred following my first post-radiation MRI.  I began researching NeuroSurgeons in the area after I had my seizure in June.  I had a few likely candidates should I need them so I was able to move fairly quickly in finding a new NeuroSurgeon and I have a backup should it be required.  Although I hope that I will strike it with this one.  Mayo Clinic is rated number 1 in Neuro in the USA so I think I should be in pretty good hands. 

I will be seeing a Neurologist and NeuroSurgeon at Mayo in Rochester, MN on the 29th and 30th of October to get their opinions on what the last couple of MRIs have shown.  If you remember my July MRI showed an area of enhancement that they were uncertain about.  My suspicion is that it's this area that is concerning them and thus why they wish me to seek a more experienced opinion on it.  This is one of the many things I like about my Neurologist and thus why I have not allowed his nurse to run me away from him.  He knows when he's in over his head and you have to respect a doctor like that. 

It will be a long drive at around 7-7.5 hours but I think it will be well worth it.  After we find out what is going on, Mayo is known for working well with doctors in the patient's area so hopefully it will not be one of those treks we have to make often.  Even if it is, to put a group you can trust running the game makes it worth it.

I guess this isn't really giving much in the way of information but I'll know more when I get the MRI report and after I see them at Mayo at the end of the month.  For now, we just have to know that it is in our Father's hands and that there are a lot more options still out there should they be needed.

Huggles

To Thirteen Years of Marriage

Today, John and I celebrate 13 years of marital bliss. It has been a wonderful 13 years and I hope we have many more to come.

So much has changed and happened in those 13 years but I would never trade a day of it for the world. True love is hard to come by and I'm glad I was blessed with it.

John - I love you now and always. *Kisses*

There's Some Major Milestones Now

Ten years ago today, I became officially employed at my current place of employment under a small company known as Hobbs Corporation. I have seen a lot in those ten years here. The walls have changed a few times. My original office is now a row of cubicles and the area of our IT lab used to be Quality. I have seen three corporate employers including the latest where we also lost our Hobbs name. I have seen our company go from 204 users on a Novell network to 55 users on a corporate run Microsoft domain. I have seen co-workers and friends come and go. I have seen a good company fight its way along a sometimes difficult path. Most importantly, I have made friends here that have meant more to me in the last two years than anyone will every know. It's been quite the journey since I started here. May there be many years yet in this site.

One year ago today, I went to the hospital to take my last radiation treatment. I was excited but exhausted at the same time. It marked the end of phase two of my treatment for what turned out to be a cancerous brain tumor. Now a year after the end of it, I am still fighting the cancer and even some of the effects of that treatment. The key word is I'm fighting it. :)

On Monday, it will be 13 years since my husband and I walked down the aisle. It really doesn't seem possible that it's been 13 years. I guess it's true that time flies when you are having fun. We've been through so much together and I love him more with each passing day. How could I not when we have been through the struggles we have? This should be my lucky year. 13 is my lucky number so we'll see. We have come a long way from the two kids that we were when we were first married, living on his meager paycheck while I completed school. We have bucked the odds in so many ways as we stand united after 13 years. We are happy, have a healthy son, own our own home, and would never dream of it being any other way. Sure, we'd love to win a huge sum of money so we could enjoy the benefits of our hard work but we also realize that having each other is just as important. 13 years... wow.

The Month in Review... September

I have been a bad blogger this month...

• I am 15 months past the partial resection of my malignant brain tumor
• It has been 12 months since I completed external beam radiation
• It has been 3 months since my first complex partial seizure and 78 days until I can drive again.
• It has been over 2 years since my brain tumor was discovered

Medically - I apologize greatly for not getting the update on what happened at the Neurologist out here sooner. I've just been busy and tired and the combination of the two things just do not bode well for writing. Basically, the neurologist worked with John and I very well and understood where we were becoming frustrated. He told me to just work with reception and him rather than having to work with the nurse so much. (So far this has been easier said than done.) I told him that typically a malignant tumor is watched every three months and with all the changes that had taken place I thought we needed to keep a closer eye on it. He agreed that we would do another MRI in October and determine how often to go from there. He was pleased with the medication for the seizures and agreed we could go off the medication I had been on for the trigeminal issue since the Keppra should so the same thing. I am no off of this med. Overall, John and I felt a lot better about working with him and if I can avoid his nurse, I think we will be in good shape with him. Although, I will still be seeking a NeuroSurgeon's opinion as well as getting acquainted with a neuro-oncologist just so I'm not scrambling if something does go screwy. He also gave me a prescription med to try for my headaches when they get in that "horrid" range that would not be as harsh as the ibuprophen. Surprisingly enough, I have only had two hit that range and I was away from the med both times. Do you think it was possibly stress over dealing with his nurse that was causing them? *rolls eyes*

I still have not gotten with my first NeuroSurgeon on the insurance issue. I really need to just bite the bullet and call them. *Sigh*

The Psychiatrist's office is working on getting my diagnosis changed to a medical diagnosis. Hopefully they have that sorted out in the next few weeks.

I can't really think of anything else other than just being really tired over the last few weeks. He said that's common with the meds so hopefully it will improve as my body adjusts to them more.

Emotionally - This has been a better few weeks emotionally. The anxiety has eased and other than dealing with issues related to my son and his behavior, other areas have been doing pretty well. I have found I'm a lot more on edge emotionally but I think it's just because of being tired all the time and just overall stress. Maybe if I finally get the NS called to sort out the insurance stuff, I can work on reducing the stress level I have right now.

Mentally - I am hoping at least for now that things have stablilized a bit in my mental functions breakdown. I haven't noticed anything new and I have actually been able to work over the past few weeks on some of the things that were declining. If this thing wants to take away my mental advantage, it is going to have to work harder than that! I seem to have noticed an improvement when I went off my second medication. The neurologist said the "decline" was likely from the medication so maybe he is right and it wasn't just that I was on the meds but the combination of the two causing it. I can only hope!!!

Physically - I have seen a HUGE improvement with the headaches and have not had to take ibuprophen in over two weeks. Honestly, I'm not taking the Tylenol anymore either but I am on some cold medicine with acetaminophen in it to combat my allergies/sinus that is trying to break over the edge and act up. I think I could probably go off the Tylenol entirely at this point but I will do it gradually after I go off the cold meds.

Really, physically, my biggest complaint is the tiredness. I'm sure I'm just overdoing it. We are busy at work and with John working longer hours, I have to try to do more including handle our son's attitude spells and "not wanting to do homework". Honestly, trying to convince him to do what he HAS to do is harder on me than physical work. It takes half as much mental work to wear me out as it does physical. I think that's just a part of my new normal I need to get used to. Of course, you hit the "during the week 9.5 hours of sleep isn't enough yet on the weekend I'm wide awake after 8" syndrome. I find it extremely hard to sleep in on the weekend and typically only manage 8 hours and if I'm lucky 9. Yet I will be exhausted on weekdays. I know this is just a fact of life but it's still annoying. LOL

Work/Family/Play - Work has been... busy. We are working on several different projects and I've got the constant "computer refreshes" as well. It's going rather smoothly even if I don't always get as much as I hope done each day. Some days I just struggle to find that little bit of energy to do what needs done. It seems either I have a productive morning and "can't do anything" afternoon or the other way around. I can't seem to put both morning and afternoon into the same day. Again, it's probably just a limitation on my energy levels. I try to spread it out and do physical type things during one half of the day and mental the second half but even then I tend to feel the slump. I am making progress and I am getting things done so I guess that's the important part!

John has been working major hours. We barely see him at night. He gets home about an hour and a half before I go to bed so it doesn't leave us very much time. He's also going to work earlier and working long Saturdays. Last night he didn't get home until 8 PM after starting work at 7 AM. Don't get me wrong, the paycheck will be nice but I do hate the long days.

On top of John working longer hours there was the murder of an entire family not far from where I live. I didn't know the people who were killed but I do have a friend and her family that lives in the same town. The police are giving us very little information at this point so you can't help but look over your shoulder and double-check your windows and doors when you are home. I hate being home alone with just my son and I.

Speaking of my son, he is more and more into the attitude each day. I think I should have not bragged about him doing well in school. He decided to pull a really stupid move around Labor Day and now he is seeing the penalties of it. He is barely passing all of his classes now due to the "0"s he received and he is finding out what it was like to live before TV and video games.

As for play, we haven't been doing a whole lot of it recently because with John in busy season there really isn't time. We did break down recently and take off just the two of us and went to the Riverboat not far from us. We had a good 4-5 hours, came home just $40 poorer (I lost, John won), but had a blast and it was nice and relaxing. We had fun and both agreed we need to do it more.

I think that is just about all for now. I'm not even going to put that I will try to send more updates because that is a certain way of jinxing myself!

Huggles

The Progress of My Hair

One year ago, this is what I was left with after completing radiation (ignore the markings on my head, this is from Halloween last year. I realized that these are really the only good pictures of my bald head that I have...):






















This is the proof that I have a huge bald spot still... even if I'm much better at hiding it now:
















When I have a good hair day I can hide it quite well, although the 30 minutes it takes to get this really sucks when you are used to it taking about 5 minutes:

















And the answer to the question I am asked the most... Did you perm your hair or is that what treatment did?

Nope, it has always been naturally curly thus why I always had long hair to pull out all of the curl!!! :D

I think it's made some pretty good progress overall. Now to just get that large bald area to get some hair that isn't as light and hopefully encourage it to thicken some. (Or the other side to hurry up and start to straighten so I can do a comb-over!!!)

The Month in Review... August

Ok, so it's late... Does it count that I started it in August?

• I am 14 months past the partial resection of my malignant brain tumor
• It has been 11 months since I completed external beam radiation
• It has been almost 3 months since my first complex partial seizure and almost 3 months until I can drive again.
• It has been 2 years since my brain tumor was discovered

Medically - I think I'm just going to make updates on the entry I made August 25th because I sure don't want to have to go into the entire story again.

I see my Neurologist on the 8th and John and I plan on having a very long discussion with him. If I don't feel comfortable with the way he handles things, I will be seeking out other doctors. (I might be doing this anyway.) I have some names of people to talk with at Mayo as well as one here locally so I will be seeking further opinions and possibly firing my third doctor since this whole thing began.

I have not yet had the will to confront my first NeuroSurgeon about the "malignant" tumor in my records. I hope to do it some time this week but things have been quite hectic at work so I will have to wait and see.

I have spoken with those at the Psychologist office and they were going to investigate to see if they can give my condition a medical diagnosis versus a behavioral one or not. I can't see why it will end up being a problem but I haven't heard back from them yet. If this fails, then I will have to file an appeal and hope that it goes through. Otherwise, I'm likely stuck paying the bill. I did finally find where they say they are "two different entities" but it is buried in a 20+ page document under "exclusions". Had I not been having focus issues, thus the reason I sought him in the first place, I would have probably seen this and known to verify it elsewhere but alas they take advantage of that to get more form their patients. I will basically have three choices of what to do if this ends up not being covered: find an in-network doctor (which I don't want to do), talk my doctor into keeping me on the meds with visits limited to twice a year, or wean myself off the meds entirely and learn to deal with the side-effects of surgery and radiation without it. Obviously, I would lean towards the second option but I would take the third before I would the first.

As if that isn't enough... I think that is it medically this month.

Emotionally - It has been another rough month in this category. The combination of a flare up of my anxiety (the reason I sought out my therapist, who is not to be confused with my psychologist two years ago), a sudden realization about what all I've lost with the combination surgery/radiation I've undergone, second guessing decisions I've made over the past two years, being depressed about not being able to drive for another three months, and just overall stress has made things quite ugly of late.

My anxiety rared up a few times and it's not about the type of thing you would expect. I don't have anxiety with things regarding myself, only when it has to do with my husband or son. You can rest assured that if something is going with them that is out of the ordinary, it will throw me into an anxiety attack. The thing with the State Fair 4H show, John doing his training, John doing jury duty, etc. They seem like nothing at all but the anxiety usually shows through even when I try to ignore it. Can I explain to you what would cause me anxiety about John serving in jury duty? No, I can't. It just does. As my therapist says, "Beware of Attack Frogs" and that's what it is. Something that can't really hurt you but causes anxiety anyway.

Actually, I did misspeak when I said none of it concerns me. I have been anxiously awaiting the right moments to deal with the medical things. Here's something about me that I bet not many people know... When I stall to make a phone call to someone (such as a doctor or insurance agent or someone along those lines) it's because I'm working the conversation out in my head so I don't panic and not say everything when I call them. As long as it is researched in my head, I can usually get through the call with no problems. However, it takes every ounce of my courage and determination to make these types of calls. Perhaps it's a big of a social anxiety but one that I've successfully dealt with and hidden most my life. I mean once the ice is broken, I'm pretty smooth sailing but until that ice is broken, I'm an anxious wreck.

Off the anxiety and more to the next thing. The 22nd, while at the State Fair Square Dance, it dawned on me just how much I lost with surgery and radiation. I literally hit it like a brick wall. You see, I love square dancing. I have a great deal of fun with it and I meet a lot of wonderful people. I used to be the first one ready to hit the floor and "whine" to the caller in lessons about wanting to learn more. I'd be out there each and every dance whether I knew how to do all the calls or not. Well, not anymore. I still love square dancing but the combination of mental fatigue, struggling to get into the flow, stamina, and pure loss of mental focus has made it a struggle for me to dance and it was never more apparent than that Saturday night. It was the kind of dance I used to love. Fast, lots of spinning, tossing in of seldom called calls, etc. I would have loved that before. Instead I felt mentally drained, dizzy, and exhausted after just four tips. This just slammed into me after the months of feeling myself go backwards again in the memory, mental reflexes, and other brain functions. All of which became more apparent following my first seizure. It's possible it is a byproduct of whatever caused the seizures, maybe it's the headaches causing me to be unable to think clearly, maybe it's the radiation doing that 10 year aging thing. Whatever it is, it hit me all at once that night. Needless to say, it was a bit depressing and made me second guess some of my decisions over the past two years. None more so than my decision to do radiation.

Then you've got the lack of being able to drive. I hate having to arrange a ride to do everything. If I have a doctor's appointment to schedule I have to do it, not just when it is most convenient for me but when I have someone who can take me and it doesn't put too much hardship on them as well. John is going to be more stressed this fall because I can't take off and do the shopping or whatever needs done while he is working. The more stressed he is, the more stressed I am. Not to mention the weeks of not being able to really get out much that will inevitably occur. I keep telling myself, you are lucky, you've got people willing to help and you can get to work with no real issues but that is beside the point. I miss chatting with my best friend on the phone while I'm driving home in the early evening. I miss getting home almost an hour earlier or being able to stay at work late if I'm right on the edge of a breakthrough. I miss running to the store to browse or going to a FLYfest with my friends. I miss being able to call up my chiropractor and make an appointment for thirty minutes from now and know I could make it with no problems. I know, it's not forever but I miss it all. I just keep telling myself I'm almost half way through. I just have a feeling the second half is going to be very difficult.

I don't think I even need to go into the details of why I'm stressed!!!

Mentally - I've already addressed this quite a bit. I'm slipping some whether it's from stress, fatigue, or just the physical factor of what is going on in my head. In quidditch, I used to be a nearly unbeatable player but now I find myself missing simple questions on a regular basis. I used to be able to do semi-complex math problems in my head, now I'm lucky to add together four or five numbers without writing it down. My memory is slipping again to the point I think I'm going to have to start carrying around my notebook again or utilizing my iphone more. Mentally I'm just not right and I hate being anything less than full capacity.

Physically - The headaches still continue at the constant, low-grade level. Luckily, they are being managed by routine Tylenol for the most part. I only have to occasionally supplement it with ibuprophen. I am hoping that I will be able to wean the Tylenol down to one every five hours instead of two but we're taking it one step at a time. I want to manage on just Tylenol for a bit before I start introducing reductions.

My hair continues to come in. I really do need to take a picture and post it. I'll try to do that before the next update.

Work/Family/Play - Wow, I'm not even really sure where to start here. Last week was not a good week on the work front either. On Monday, they announced they would be shutting down our sister plant and on Friday we lost one of our own in a motorcycle accident in Wyoming. He had been with our company for 35 years and was once the "head" of our department and the president of the company for a time. All I can really say is "RIP, Mike. You will be missed."

Onto some happy thoughts. My son seems to be doing well in school so far this year but it's still early. He has told us that he wants to be able to join BETA club and he must have good grades to do that so we hope he has turned over a new leaf when it comes to grades.

For the remainder of his 4H things over the summer (this may be repeat for some of you), he won the purple ribbon in both his woodworking and electricity. He would have been eligible for the State Fair in one of them but I goofed and we didn't know about it until it was too late to sign him up. However, we were all very pleased with it and as it turns out, it would have been difficult for him to show that weekend anyway. Just one more of the mysterious ways in which God works.

John has been busy at work but running around at home has him crazier than anything. With me unable to drive, all the errands falls on him. I don't think he realized how often I would make stops or detours on my way home to do things. Anyway, I think we will both appreciate my ability to drive when it comes back.

As for the second week of jury duty. He had to serve for around three hours and dismissed. Now he's done for another year. I say that in all honesty. In the five years before we moved he was summoned for jury duty four times. He only had to serve once because the other three were all within a year but still. He lucked out with one of them because it was a Federal Grand Jury and they said it could take 2-3 months! Anyway, now he's good for another year.

A quick run-down for some things I mentioned in another entry. My dad is doing fine and he's back to work with no restrictions. My grandma is out of the hospital and if we can keep her from trying to do yardwork, will be just fine. And... I think that's it.

Ok, that's all for now. I've got a Memorial to get ready to go to. Huggles