Steroids: Necessary but Evil Drugs

I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.

It is no secret that medical steroids cause a lot of problems with just about everyone that takes them. Therefore, I am really no exception to it I'm just tired of them already and need to vent about them a while. Might also give something for others that deal with these to relate to or warn those that may have them in the future.

A little background: I am NOT a medical doctor so anything I say here should be verified with you your own medical doctor. I am no expert on steroids just someone that has had the misfortune of being on two types during different periods of my life and is a little annoyed right now at the side effects caused from her latest 13 day and counting stint on them. (Don't get me wrong I'm happy to be on the 13 day stint of the particular one I'm on rather than one that I've been on in the past but Evil is Evil!!!)

Anyway, as this post moves along please forgive me if things don't seem in a logical way. It is a cross between the steroids, the issues I am having in my head anyway, and the fact roosters aren't even thinking of getting up yet.

So what do steroids do? They help/replace the bodies natural production of corti-steroid (typically produced by the adrenal glands) to help control swelling and inflammation. While there are several forms of medical steroids, I can on speak on my experience with two: Prednisone and Decadron.

My very first experience with Prednisone happened several years ago (6+) and for all intensive purposes was pretty good. After having fought a serious attack of bronchitis/reactive airways I was put on a 10 day dose. The only real side effects I noticed with this short of dose was general mind disorientation (I don't remember how I got to work that morning) and trouble falling asleep.

My second experience was with Decadron. Dec is a very strong steroid compared to Prednisone and uses a different formula. This is typically the first choice for those with brain swelling (such as what I get) and many forms of cancer. I went on Dec the first time following my first brain tumor resection in 2008. I was on it for a 6 week time with it gradually being tapered off. At the time, I wasn't 100% sure if all the side effects I was having were from the steroid, surgery, or the anesthesia but by the time it was over, I have no doubt that 95% of the things I discuss here were Decadron related.

I went through surgery with flying colors. I had very little if any pain, mentally I was sharp as a tack post op, and generally felt great. As the days post surgery went along, my mental sharpness fell drastically with each day to the point that some days I could barely put my words together (at the time I thought it was just my brain protesting its invasion). Then the joint weakness and pain started in. I would stand up and my knees would act like they were rubber. I couldn't get out of bed without assistance from my husband because of my rubbery joints. I was in horrible pain and had to take something than Tylenol for the first time since surgery. None of this was related to my head but to my body from something. By two or three weeks in, I could no longer climb stairs, my knees could just not lift me. I actually had one heck of a time getting in and out of most vehicles because I couldn't get up if it was a lower vehicle or climb up if it was higher. While this was a pain, it was only the tip of the iceberg and lasted for me for 2 months after I was finally off of the Dec for good.

Sleep was also an issue. Despite being exhausted from anything I did during the day, I would often spend hours laying in bed trying to sleep. I tried everything to get there. Most days I would just give up on a regular sleep routine and sleep when I could. This helped but at the same time I never got the sleep I probably needed. I guess one advantage of the steroid in relation to sleep was that when I did sleep it was a dead sleep. I don't think I remember having a dream again for at least 6 months after this. (Again something I thought was surgery related not steroid until I went on the Prednisone here again)

Moods were a killer on Decadron as well. I was very mild angered compared to some of my friends I've talked to and what they were like but I'm also a very mild angered person so I guess that's not so unusual. However, it was not unusual for me to be talking to you happy as can be, be totally sad 30 seconds later, and then unable to shut me up as I talked in circles. These were annoying... yes but concerning no. The one thing that happened to me on Dec that has made me vow to only go on it if it is the absolute last option is the manic moods I got into. I wasn't just moody but would daze and get (luckily only to myself) downright hostile. I remember more than once dropping to my knees (which is a bad thing to do when you can get off your knees) and begging God to just end it. I was doing very well physically and there really was no reason for me to feel this but I just wanted it over. This scared me a lot during this time and again I wondered if this was some horrible personality I was going to have to learn to live with since my surgery. However, after the steroids finally cleared my system, things improved until finally after six months or so, these episodes stopped.

I'm going to basically combine my current Prednisone experience with my prior Decadron experience as I talk about the other symptoms rather than repeat things. Weight gain is a huge issue for most people. It's typically not your "you eat to much now you are going to pay for it gain" it's the "gain 10 pounds for no reason and in places you wouldn't normally" gain. With Dec I gained 45 pounds before it was all said and done. This time I'm holding at 15 but it's still early.

My sense of touch and the tuning I have with my body is basically non-existent. My skin feels numb, I can't feel hot or cold, my taste buds are numb, and I can't feel how much pressure I put on anything so my poor hands take a beating when I don't realize I'm too close to something and I'm ripping skin off of my nail beds. My skin is also extremely dry on my hands, lips, and most of the rest of my body but my face is oily and getting an acne issue (which I only have problems with when on steroids). Even my muscles are always tense and I can't feel anything with them because of the desensitization of my body. My body pretty much takes over on its own when it comes to the most basic functions. Basically, if it's something it does naturally it has to try harder to alert me to it (I won't go into any more details than that).

One of the things that caught me off guard within just a few days was the change in my sense of taste. I could not touch anything that had tomato in it (stopped for a burger on the way home from the hospital and about gagged from the ketchup... Yuck), things like orange juice tasted like you had just brushed your teeth and then taken a drink of it (I love orange juice... still haven't figured out if it's a citrus thing of a tangy thing though because I can drink lemonade with no problems), soda tastes flat, and various other things that I normally don't like I can eat or vice versa. I also had a major craving for protein the entire time I was on them. Skip the potatoes give me the roast... no I didn't say a slice GIVE ME THE ROAST!!! LOL

Water retention is a big issue because the metabolism of sodium is slowed. Therefore, you try to stay on low salt but even then the water collects. It is not unusual for me to weigh myself in the morning and by early afternoon I've gained 10 pounds. I remember the first time this happened was on Dec and I was have a really cruddy feeling day. I had only been up a couple of hours (long enough to eat and do my dishes from breakfast) and went into the bathroom where I saw in the mirror that I suddenly looked 9 months pregnant from all the swelling in my stomach. This made my skin hurt bad (where's the desensitization when you need it?) and I kept thinking to myself that at least when this happens when you are pregnant you get something good out of it in the end. I later figured out that I gained 11 pounds in about 2 hours in fluid.

On the same or similar note be in weight gain or water that causes it, I often find it difficult to breathe when on the steroids. It makes my check feel like someone put a huge weight or heavy water filled sack on my chest. This is often very uncomfortable and it makes me labor to breathe especially with my history of reactive airways and bronchitis. I use a lot of my tricks from dealing with the other issues to get through this but as if everything else isn't enough? LOL

You also have moon face which is swelling in your face making it very round and moon like. I think it took well into 6 months for me finally to look normal again.

At around the time I was nearly done taking the Dec I started getting muscle cramps (charlie horses) in my calves. I had not had trouble with that since I was pregnant with my son. Steroids can mess with your electrolytes and was causing me a potassium deficiency. So, of course, out come the bananas and heat which would eventually help after you are put into tears a few times.

Energy is also an issue on steroids. They pump you up, make your heart race, make you raring to go even when your mind and body want to shut up and sleep. It's a strange feeling to be laying there without the energy to open your eyes but yet your body is running a marathon. Just another one of those joys of steroids.

I really want to believe that some of the issues I had with Decradon the first time could have been made more minimal if I had a doctor that could communicate or gave a darn. However, the NeuroSurgeon that did my first surgery was anything but that. I was never prepared for what the steroids would do at that point other than that they would probably make me moody (and this was thanks to being told by my tumor buddies not my doctor). I guess you chalk my first (and hopefully last) experience with Decradon up to learning. This time I have plenty of bananas in stock, am drinking juices to help keep my electrolytes up from the beginning instead of having to try to rebalance them, controlling my sodium and water intake, taking the proper medications to manage symptoms (gastro symptoms mostly) before they start, and maintaining just the right combination of moving and not to keep me limber and strong without overdoing it.

I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)

Anyway, enough ranting and whining for now. I'm going to go grab another something to tie me over for a few hours then go back to bed.

We All Have Our Weaknesses

No human is exempt from some weakness. Some of these are physical, some are trivial, some are serious, and still others are almost stupid to those who look in from the outside. My biggest weakness falls into the final category. A completely uncalled for anxiety that directly involves my hubby. The fastest way to send me into a complete panic attack is to tell me something is wrong with John or that I will be separated from him for some reason.

I've had people hear my story or read my blog and comment about how strong I am. Yet I don't consider myself strong at all. I know that it just takes one minor change in things to set me into a pathetic maniac. John has had to deal with a lot from me because of this. Honestly, there is no reason for me to have the reactions I do most of the time but the worst anxieties I have ever felt has all been centered around him.

Brain surgery didn't bother me at all. Yes, I was a little nervous from another uncalled for anxiety of IVs (which I am proud to say I have successfully overcome and it is now just an extreme dislike) but other than that, I was pretty calm considering the magnitude of what was going on. Also, I was able to deal with things my way and didn't have to worry about how others would react to how I felt. I could research all I wanted, take my treatment into my own hands, and not have to worry about stepping on others' toes.

I believe the above gives a good clue to why I have such severe anxiety about things surrounding my husband. While I can still research and learn everything I can about something... ultimately it isn't my decision about what is done. This causes me to panic about things that should be relatively minor... such as a hernia repair or seeing an urologist for male infertility. I know that sometimes I don't give John enough credit for what he does know but sometimes the side of me that says, "I've been there, he hasn't" takes over. He doesn't feel the need to go out of the way to find a minimally invasive and as painless as possible way of taking care of medical issues. He's never had to experience any of it so he just doesn't realize. A prime example of this is the IV he was given in the ER. He often gave me a hard time about being more nervous about the IV than anything. After he got his first IV, he realized what I hated so much about it.

Anyway, I guess I just needed to get some things off my chest so I could move on with some things and hopefully not drive John crazy until he gets his hernia taken care of. I want to believe that it all just stems from me loving him so much, I don't wish for him to have to experience some of these things if it is in any way avoidable. I also believe it is so much worse with him because I know that regardless of what happens, it is ultimately his decision and I have no say in the end.

MRIs: We Hold Our Breaths

I have a bit of time so I'm going to write this one up. I started the year with a few entries about the things that I had not revealed that we as brain tumor/cancer patients go through that others don't really understand. With my next MRI looming on the horizon on Monday, I thought this was a good opportunity to reveal the uncertainty we go through when the MRI is within sight.

Even when we are almost certain that everything is fine and nothing has changed and we'll get a good report, there is always that lingering feeling in our minds that things are going too well. That this MRI is going to slap us across the face and throw our worlds back into turmoil. A lot of us have fought the cycle for 5, 10, 15 years and each time we tell ourselves we have nothing to worry about but that thought still works its way in to our subconscious..."what if it's not fine"? While some of us never fully get used to our new normal and the limitations we now have, some of us have accepted and learned to thrive with that new normal. However, that one MRI that shows something wrong again can throw us back into a place we are not ready to be back in.

I'll be the first to admit that, while the time it starts varies, I hit that period of time where just about the only thing on my mind that I can focus on is the results of my MRI. The days leading up to it is full of uncertainty thinking about all the little things that occurred since your last MRI and whether they could be indications of regrowth. Often we feel like we have to put life on hold for days, weeks, or even longer prior to the MRI. This particular MRI has done just that to me. We have put off putting the final arrangements on our trip until the results from the MRI are in. All just in case something isn't right and we have to move the trip around to accommodate treatments or specialist visits.

While those around us can move on with their lives once the surgeries and treatments are "done", we always have that lingering in our mind that it can all change with just one MRI. It just takes one cell to make the mutation and cause us to enter the world of uncertainty again.

I think one of the most torturous things doctors do is to wait weeks to give the results of tests such as these. While they might not be concerned, it's the patients that sit around wondering, "Is there something wrong", "am I worrying over nothing", "why aren't they calling". It's the very reason I've gone out of my way to ask a lot of questions of the NeuroSurgeons and Neurologists and to very carefully compare the written report to my MRI so that I can get a good understanding of what to look for when comparing my MRIs and thus, be able to at least partially calm these feelings before I get that call. I never fully ease until I get the official results but at least I'm prepared to the best of my abilities for what might be said when I do.

Whether it is a kicking in of our "Fight or Flight" response, a coping mechanism in case the worst is determined, or an unnatural feeling that things just aren't going our way but it's something we go through and often silently fight so we don't concern those around us. While we all cope with these feelings in our own ways, keep this in the back of your mind when you know that an MRI is coming up for someone fighting a brain tumor/cancer. Follow their lead. Making light of the situation when the person is genuinely concerned about it, can cause them to feel like no one cares. On the other hand, being overly concerned about it when the person is not outwardly showing any concern, can cause them to have panics about it they shouldn't. No two MRIs are handled the same way just as no two people are alike. :)

For those of you that know me, you can guess which method I take. Let me do the worrying about it and don't get overly concerned about it. It's my natural tendency to worry more about others than myself so let me worry over the MRI in my own way. Remember that the smile on my face is sometimes just a facade that is hiding my true feelings but if you reveal that, it could break.

Huggles all and shall Monday hurry up and get here!!

He was Listening to Me... :)

Well, I guess the frustrations that I expressed earlier went straight to God's ears! I have heard from the DMV and effective immediately, I am approved to drive again!!!

It feels like a HUGE weight has been lifted from me! I can't wait to get back behind the wheel. :D

This means that I WILL be at the Relay meeting on Monday and whomever is parking in my place at work... I'm back!!!

Thank you to everyone for your prayers and support through this long six months. I love you all!!!

I Should be Driving Again...

The key word in that subject appears to be SHOULD. Today it has been six months since I had my last seizure and legally that means I should be able to legally drive again. However, it took a month for me to get paperwork filled out at my Neurologist's office and I suspect the DMV didn't get the paperwork until maybe Tuesday or Wednesday of this week. Therefore, if I do get notification today that I can drive again... I would be seriously shocked. Truth is, with the holidays and everyone at the State taking last minute vacations and the like, I will probably not get official word until mid-January. :(

I've attempted calling them to ask if I can drive until they give the final approval... no luck there. I've attempted emailing them to ask... again no reply. I guess I'm just doomed to waiting until I get the paperwork back from them giving me permission to drive again. I guess they just truly don't understand what kind of a hardship it puts on someone, that is already going through a lot, when they can not drive. It adds at least three times as much stress on me because nothing is easy. It's not like I purposely had a seizure to lose my license. It's not like I did something illegal. *Sigh* I guess this is just another lesson in patience.

I've been looking forward to today for the past three months and now it's not happening as I envisioned. It's a bit depressing. As if it hasn't been hard enough to fight that for the last two years now it's getting even harder.

God, grant me the patience to get through this stage and the strength to come out stronger for it. - Amen

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

A Milestone that is Thirty

I sit here today, ten days before I start my fourth decade of life thinking about all of the things that 30 years has allowed me to do. Some of those things are positive and some are not but they all make me the almost 30 year old that writes this blog today.

In my first decade of life, I witnessed the explosion of the space shuttle Challenger upon take off on January 28, 1986. This is the first major event that I remember. You know, those things that you never forget where you were when... Then in my third decade of life I sat with my son, just a few years younger than I was for the Challenger, watching the space shuttle Columbia explode on re-entry. In three decades I saw two space shuttle disaster, of which neither I will ever forget.

I have witnessed the ridicule that comes with being a teen mom, the joy of hearing your baby giggle, the pride of watching your preteen turn into a respectable young man.

I have experienced 12 years of marriage and all of its ups and downs. I have cherished the 14 years, almost half of my life, that I have spent with my True Love. I have stood up against the odds to make sure it all worked.

I have been blessed with friends from many different levels who provide an ear to listen, encouragement to continue, and a shoulder to cry on. These friends have always appeared when I need them most with the words I need to hear. Be they for a reason, a season, or a lifetime they never fail to be there when I need them.

I have been honored with many awards and from various means. There have been physical rewards such as trophies or ribbons for writing, education, and 4H. There have been personal rewards such as a meaningful letter, a special prayer, or a note of encouragement. There have been spiritual rewards such as strength, courage, and recognition for grace under fire.

I have felt the fear, the anger, and acceptance of being diagnosed with a brain tumor and eventually cancer. I have witnessed the fear in my loved one's eyes, the respect of those that can't believe their eyes, and the tears of knowing your life is fragile. I have looked in the mirror and seen the scars of surgery, the loss of radiation, and the person who is still looking back at me and fighting.

I have been gifted the strength to endure, the knowledge to accept, the innocence to believe, and the faith to be at peace with my decisions, the crosses I've been chosen to bear, and my life.

I think the past three decades has been good to me and I wouldn't change any of it if I could.

Attitude Really Makes the Difference

I was talking with my therapist today and we got on the topic of personality and attitude. Now not attitude in a bad way but the outlook and attitude that allows you to overcome major obstacles. I have thought about this very thing a lot in recent months. It never fails, at least once a week and sometimes more, I will hear someone say, "I don't know how you do it. I don't think I could have the outlook you do if I were in your shoes." Most don't believe me when I tell them I used to feel the same way. I fully believed that when faced with something like brain cancer, I would curl in a ball and turn my back on the world. Just the thought of cutting my hair shorter than my shoulders would almost put me into tears. So what changed? When you are given no other choices you have to make the decision or in some cases die.

So much for trying to make that a small introduction. LOL Anyway, our conversation continued down that way and I voiced something that I have only thought about until now. I'm sure everyone knows someone who is or was a survivor of cancer or some other "terminal" illness. So let me ask you... What Who is a survivor? A survivor is someone who looks at the odds then chews them up and spits them out. Sure, they may still fall victim to their element but it wouldn't be due to a lack of fight. For those that fight to the end, we don't believe in saying they lost the battle, instead we say that they won and are now in heaven and are healthy again.

Besides the obvious things of when it was found, type, etc... The obvious difference between those that survive and those that don't is attitude. Seriously. How many survivors do you hear utter the words, "After I was diagnosed, I quit my job and just sat around the house waiting to see what would strike me down next"? How many survivors do you know who found a corner somewhere and curled into a ball for days at a time? How many survivors say "When they wanted me to walk around the hospital wing, I told them I hurt too much"? The answer is not very darn many and possibly even none.

A survivor might have bad days where they don't want to get out of bed, but they do anyway. A survivor stands up and takes what comes their way and researches for the future on their own time. A survivor takes that extra lap around the hospital wing even though they are tired and their whole body aches. A survivor knows that the most powerful of treatments are meaningless if you do not have a positive attitude and a will to fight and live life. A survivor knows that if you are going to sit around feeling sorry for yourself while life passes you by, why live?

I would also bet that a vast majority of survivors didn't think they had it in them before the doctor uttered the words, "You have... I'm sorry." It railroads them just as any bad news tends to do to a person but they reach within themselves and find that will to live. Some do it for their spouse, some for their children, some for our family, and others our friends. No matter where the motivation comes from, we all find it and soon we know that WE want to live.

Before long we find ourselves comforting others, telling them everything will be fine. Before long we are presenting the doctors with clinical trials we want to look in to and treatments they haven't mentioned. Then we have the doctors telling us that we have made a wonderful recovery and that we are handling things well. We have friends and acquaintances telling us that we are an inspiration and that our outlook has changed theirs. I don't know about others, but I don't wish to be anyone's inspiration but if my journey can help someone else through a bad situation... then it is all worth it.

I may not see my 100th birthday, dance at my 50th wedding anniversary, or possibly even reap the benefits of retirement. However, I know I will live my life to the fullest, will be fighting to the very bitter end, and will be looking to the angels to heal me on the other side.

Remember Attitude is Everything!!!

I Really Am Just Human

LOL Ok, so the title is a bit strange. I'm just in one of those moods I guess. I guess I need to give a bit of background to explain before I go on...

I get told, several times a day, that people are amazed at how I have handled my journey through brain tumor, surgery, learning it's cancer, and radiation. I've been called (and I quote) "Superwoman, Amazing, Unbelievable, Crazy, etc." As much as I try to explain that I am none of those things, still someone else will read or hear my story and repeat the statements.

I will admit that I have had people who have been through it say similar things. I honestly don't know how else I could have handled this ordeal. Any other way seems completely foreign to me. I think my catch response has been, "When you are diagnosed with something like this, you have two choices. You can crawl into a corner and cry 'woe me' or you can take the bull by the horns and face it head on." I've always been the type to confront problems with a head-on approach. I've always been the type to do things a bit differently than most. I've always been one to push against the odds. I think that MAYBE these things all worked together to give everyone the look at me they have gotten.

I think a friend said it best a few days ago. She told me that she admires the grace in which I confronted this whole thing. To me, that was a compliment with the highest regard. It touched my heart. (Not that I have an issue with everyone saying it's amazing but...) It felt like someone truly got it. It's not that I'm amazing. I'm just like everyone else. I just handle things a bit differently. I'm one that would be faced with a crisis and be the first one to try to jump in there. Mind you, I would have to have a plan worked out in my head but what's that take... 30 seconds in a crisis? Anyway, this is taking me off track from the purpose of this post.

The real purpose of this post is to let down my shield just a little bit. You see, I have become a pro at placing a shield up so that I am difficult to read. Even before all this came about, I always had my shield, in the form of a smile, up. It very rarely comes down... even when I'm very sad or angry. Not all of my days are good ones. I do have my bad. (I have alluded to this a few times in updates.) I have days when it takes every ounce of my soul to get out of bed because I just feel there is no point. I have days when my mind wonders to what I will say to those special in my life when my tumor does take a turn for the worse and I know my days are numbered. I have days when I crawl into bed at night and find my pillow wet before I actually manage to fall asleep. I am just human. I have the same down spots others do, I just handle them with a more positive spin. Instead of staying in bed and dwelling on my "lack of future", I get up and put a smile on my face. Before the end of the morning my smile has convinced me that every day is part of my future so why waste it. When my mind wonders, I let it. I don't dwell on what it is thinking but rather pretend it's my creativity needing an outlet. When I need to curl up and have a cry (I hate for people to see me in tears), I sneak to my bed and let myself go. However, I also tell myself that crying is healthy sometimes and do to myself what I do with others... I think of something funny to make me laugh.

So you see, I have my down points as well. It's how I look at them that is different. It's how I cope with it that is the key to being able to handle this "with grace". I also can't take all the credit. I have been extremely blessed with wonderful friends and family who have provided A LOT of support. I have been blessed with a therapist whom I had the opportunity to get to know well before I was diagnosed. (Would you believe I have dealt with anxiety and depression for many years? See what I mean about the shield?) I have been blessed with faith that has brought me what I need when I need it. Sometimes it's an unexpected phone call, a simple email, a smile from a friend, and sometimes those people don't even realize they are doing anything to help me.

To those angels out there that has been sent my way... THANK YOU. I can never repay you enough. **Huggles**

Faith is half the battle, Attitude and support is the other half, doctors get about 5% credit and only because I don't want just ANYBODY operating on my head. :)

The Art of Convincing Myself

This particular post might change some people's minds about how things are going with me... but that is not its intention. I just want to express my feelings and this is how I am feeling right now.

I wish I could sit here and tell you that I feel that radiation is the logical and best next path for me. Unfortunately, I can not do this. Yes, I am doing it and I will continue the therapy but I can not honestly say that I feel it is the right path for me at this time. I believe I need to just trust the doctors and 100% of everyone else but in my heart I am not yet convinced. Will I ever be convinced? I wish I could answer that right now. So why am I doing it if I am not convinced it is the right path? For once, I just have to trust the doctors. Do I trust the doctors? I trust very few in the medical field. Is it important that I eventually convince myself this is the right path? Yes, it is very important for my mental health. Why? If radiation doesn't work or the side effects get severe, I will always question why I didn't follow my instincts. It's not like you can undo it once it begins.

So why am I not convinced? I really wish I could answer this. I'm typically a very logical person and this is good and bad sometimes. It's good because I weigh out all the options. It's bad because sometimes I pick up on things and ask questions that have no answer. I believe this is where the current problem lies. I have questions that just can not be answered and because of this, I can not convince myself that this is the right choice. This is just one of the many things I feel are working against me in convincing myself of this being the right path. Others include the fact I am still not having any symptoms, this tumor has not showed change in the past year, I have not received "my" sign that this is the right path (I have every other time prior), I had less time to contemplate this decision, and I'm not sure the benefits can truly outweigh the side effects.

So you see, I'm in a very confused mental state right now and this will probably be even more affected by the fact that I will probably never get myself convinced of this choice. Unfortunately, if I come to the conclusion that this definitely isn't the right choice... it's a bit too late.

Just Some Monday Morning Musings

Wow, it really has been 12 days since I last updated. I am so sorry. I have good reasons though. Last week I started back to work and I was absolutely beat when I got home each night. I am hoping I'll be able to increase my stamina just a bit as this week wears on so hopefully that will mean more updates this week.

Anyway, as I said, I did start back to work last Monday. After much twisting of arms, I was able to get approved for restricted return of only four hours a day. It's working out pretty good for the most part. I am able to get through my day and get home without too many problems. I have the option of dropping by my Grandma's house and taking a nap if I really need to but I only needed to take advantage of that last Monday. Otherwise, things have run smoothly.

On to the big issue... I start radiation with a simulation on Wednesday at 2 PM. I am told this appointment can take up to 1.5 hours. Basically, they do lots of scans and things with a "simulation" machine to make sure they have things laid out where they need to. I'll admit, for the first time since surgery, I am a bit nervous. I'm still not confident I've made the right decision on radiation so that is weighing heavy on my mind and my nerves. I guess I just don't trust doctors very much and I question whether he will really tell me what the odds to damage on my optical nerve are. I know that legally they have to, but that doesn't make me feel any more confident. Doctors have a way of wanting to stick with protocol regardless of whether that is the best path for the patient or not. We live in a "quantity of life" society and I'm not in that mindset. The only thing that matters to me is quality of life. I am worried that the "side effects" of radiation may impact my quality of life. I would not be happy if that were the case. Again, this comes through because I HAVE NO DEFICITS. If I had any deficits, it'd be much easier to accept. Are you beginning to see a pattern here? Me too. However, I have to believe this is the way that God wants it to be or he would have revealed a deficit to me at this point. He's testing my resolve. :) Well, I'm up to the challenge and I know I will get through this... even if the path ends up being a little rougher than I want.

In other review, as already mentioned, mentally I'm struggling a bit with the decision to do radiation. I know I just have to believe it is the right thing to do but that is hard when you don't really believe that. However, I have to focus on why I agreed now is the time in the first place. I decided that I would rather "recover" once instead of twice. You see, I'm recovering well from surgery but I have a long ways yet to go. By doing radiation now, I will be brought down from fatigue and the like now so that I can recover from both things simultaneously. If I wait until we see change in the tumor or I develop deficits (which is my preferred method) I would be allowing myself to get back to 100% only to turn around and be knocked down again. That's a hard journey to have to start over. Therefore, I've decided I would rather do it all once than to work my tail off to get back to 100% and be knocked back down. *sigh* I'm sure it's the wrong reason to do this and it may come back to haunt me but for now it's the path. We'll see where it leads from here.

It felt good last week to return to work. I honestly feel that physically I am at about 90% of what I was previously. Stamina is the role in the remaining 10% and I realize that I may never get back to what I feel is 100%. However, that won't keep me from trying. One of the reasons I knew I needed to return to work was that mentally I am more in the 70's of percent. I can't recover that part of me without getting back to a normal routine. Thus why I had to return to work in order to recover more. I know that radiation will probably bring both of those numbers back down but as I said, I'd rather do it once than twice.

Motivation and initiative continue to be problems for me. They are slowly improving but I'm worried about the damage that will be done before they recover enough. (Bills have to be paid no matter how little motivation I have.) I have also noticed strange little things like my temper not being as long and me being unusually snappy. I am hoping both are just temporary. We'll see what the outcome is in a few months time.

Ok, I think this is long enough now. I have to get my son on the school bus then head to work. *huggles*

What I Would Do Differently

I'm just sitting here procrastinating working on what I really need to so... Here's the question I asked myself: If I had to do surgery again, what would I have done differently?

1. I would have cut my hair a lot earlier. This would have given me more time to get used to the length of my hair before surgery and thus brushing it now would have been less awkward.

2. I would have brought the list of questions that I asked my NeuroSurgeon with me to ask the "replacement" NeuroSurgeon prior to surgery. Then maybe a few of the things that I was surprised at after surgery wouldn't have been a shock. What questions in particular? Where would the incision be? How much would you shave? What if any anti-seizure meds will you put me on? What is the plan for recovery both in the hospital and at home? When will I be allowed to get up after surgery? What can I expect following surgery? Ok, that is enough because it would take about two feet to list them all.

3. I would have gotten my surgeon's "right hand man's" email while we were in the hospital instead of waiting until later.

4. I would have insisted that my questions get answered before I left the hospital instead of them being brushed off. They might not seem important to the surgeon but they were important to me.

5. I would have given John instructions on what to ask and to be persistent with them. I was just too foggy when leaving the hospital to keep pushing.

6. I would have tried to slow down a little more in the early days after surgery and relaxed. Unfortunately, I felt good and staying in bed didn't so... I have a feeling I'm paying for that decision now.

7. I would have asked more questions on the steroid and its side effects. I was not expecting to have more problems once I was off of them than when I was on them.

8. I would have implemented gentle exercises for my legs (including knees and ankles), arms (including elbows and wrists), and back (especially neck) from the beginning. I think this would have prevented some of the weakness in them and my muscles. I would have also continued my walks as much as possible. I would have had to listen to my body and stop when I needed to but I would have hopefully kept as much of my stamina as possible.

Ok, I think that's enough. I think that rounds it out nicely.

We're Five Weeks Out Now

Five weeks ago today I was in surgery to have my brain tumor removed. Part of me feels like there is no way it's been five weeks and another part of me can't believe that it's only been five weeks. I guess it's just one of those things.

In technicality, I am scheduled to return to work next week but since I haven't seen my doctor yet, that will have to be pushed out another week. (Note to self, if you haven't heard from your short term disability you need to find out what is going on.) I'm not sure I could return to work yet at this point anyway. I'm building my stamina at this point but I'm still pretty weak and I'm at about 5 hours of activity before I have to lay down. Anything over that and I start getting a little... weak and uneasy and I definitely can not afford to fall at this point in time. (Which brings me to the other thing of I am unable to get up off the floor if I did fall. Don't ask me how I know but it wasn't a fall just a weak thinking moment.) Don't get me wrong, I'm actually looking forward to going back to work but right now I'm still enough in recovery mode that I'm just not sure what I'd be able to handle. We'll have to see what happens.

Let's see. At some point today we are going to go have a venous doppler done on my legs. I woke up yesterday morning with an awful pain in my legs. We are hoping that I'm just having some muscle spasms from officially being off the steroids but they want to rule out a late breaking clot. It's better to be on the cautious side. I am also hoping to get into my GP and if everything is good on the doppler, get a dieretic or something for this darn swelling. It is really starting to get on my nerves and when there is something that can be done to combat it, what's the use in dealing with it?

I will say I am happy to be mostly back to normal as far as mental capabilities go. Believe it or not the thought of being on the computer turns my stomach right now (not a good thing when you work on them for a living) but other than that I'm just as sharp as I have always been. About the only major thing I've noticed is concentration and motivation. It really takes a lot of my concentration to do most tasks. I have to really set my mind to things and give it my complete focus. Multi-tasking is not one of my strong suits at the present but I'm sure that will come back with time. I am only five weeks out after all.

Ok, this ended up having no real rhyme or reason so I guess I'll wrap it up. I have my first follow-up with my NeuroSurgeon next Monday and I'm sure I'll have tons to report after that. I am also determined this week to finish writing out my "surgery experience" and I have some very special pictures to post soon. FrankenAmy anyone? Anyway, talk to you all soon. *HUGGLES*

I Finally Wore Myself Out

... and it was just what I needed!!!

I had a fabulous day yesterday. I got a fair amount of stuff accomplished including making a nice meal for my family. It felt really good. I also accomplished several meaningless... errr productive tasks that made me feel like I'm actually living again instead of just existing. That means a lot to me and I'm really looking forward to seeing things start fitting back into place.

I will admit that I think I both mentally and physically exhausted myself yesterday but I knew when 8:30 rolled around and I was tired, that it was just what my body had ordered. (For those that maybe don't know... pre-surgery I usually went to bed between 8 and 9 PM every night. I'm just one of those people that need that 8-10 hours of good quality sleep to be in prime working order and I've done it my entire life.) Anyway, I slept about 9 hours solid and it really was the best sleep I've had since surgery. I was just out and I've awaken this morning feeling truly rejuvenated.

It's still very early in the day but my mind in clearer this morning than it has been in weeks. I like being able to sit here at my laptop and words just flow to my fingers. I have struggled with this fog enough the past few that it just feels good to be feeling normal.

I think I will have to take it relatively easy today because I don't want to go reverse by overdoing it too often in a row but if this is any indication, I have a feeling things are starting to look even more up in the days to come.

Well, just a short and sweet blog post. Who knows, maybe today will be another good day and I'll get some more of my surgery blogs written.

*huggles and God bless*

We Are Really Home Now!!!

We arrived home around 8 PM last night. It was a long drive and we had some problems getting my steroids at the local drug store so it took a bit longer than we expected. However, we made it and it was wonderful to sleep in our own bed last night. I slept very well, despite having to wake up at 3 AM to take my steroid. Luckily, when you plan things right, it only takes a minute and then you can slip back to sleep. :)

We know that the journey is still a long ways from over but I don't think we could have asked for a better outcome to this first stage of the journey. I could not have written the surgery and recovery to go any smoother than it did. I was positive that it would all turn out great, but even I did not think it would go as smoothly as it did. I feel fabulous today despite probably not getting the amount of rest I probably should have yesterday. My biggest issue today is that my head is itching like mad. There's a bunch of "gunk" in my hair from surgery and several days of not washing it and it itches like crazy. I have a week or better to go before I can do anything about that. I really can't wait though.

The incision looks fabulous and other than a bit of minor tightness as it heals, it feels pretty good. I've found that the trend continues and the majority of the "pain relief" I am taking is more to ease the itching than any actual pain. Luckily a single tylenol dulls the nerves just enough the itching becomes manageable.

For those interested, I have lost a total of 6 pounds since the day I went into surgery. I guess that liquid diet can do more for you than you realize. :) It's not an easy way to lose it and I know the steroids will likely reverse the trend yet but at least I know of something sorta positive coming out of it.

John has agreed to help me shower here in a little while. I can't get my head wet but I can at least work on a bit more of the tape that is covering most of my body. I will probably try to sleep a lot today to finish catching up on my sleep and I'd like to spend some time on the porch today but otherwise, I'm just taking it easy.

We will be home most of the weekend and every day next week but Wednesday. I have a doctor's appointment on Wednesday and I plan on stopping by work to prove that I really am feeling as good as I look from my posts. Seriously, this ended up being a piece of cake compared to what I expected. I am also hoping to "visit" dance next Saturday. I won't be able to dance and my visit may be for only a few minutes but again, I think it will be great for the spirit to see my friends. Otherwise, for the most part I am up to visitors. I do recommend giving us a shout before you come over though in case I'm taking a nap. I wouldn't want anyone wasting a trip to see me. Also, if you are squeamish, be sure to call before you come over. I have taken to not covering my head already and it is a bit much for those with a squeamish tendency. I have no problems covering it, you just have to let me know ahead of time. :)

I know a lot of people has asked what they can do to help us out. Right now, I really can't think of anything major. We picked up a few things last night while we waited for my meds so we have fresh fruit and veggies in the house and bread. The only thing we forgot is milk but John plans on "getting out of the house" to get that a bit later. Otherwise, we really are pretty caught up still for now. Your words of encouragement, you notes of get well, and your emails of strength have done more for us than any of you will ever realize and I will never be able to repay you all for it. I have thousands of angels looking over me and I can hear their wings beating quietly.

I love you all and I thank you for everything.

Huggles

The Countdown is in Full

Well, it's to the point now that I officially feel comfortable counting down by days instead of weeks. LOL 13 days to go. I guess it's just my lucky number that is making me feel this way. :D

Anyway, this week we are busy packing for our busy next few weeks. We will be spending four days in Ohio at Cedar Point riding roller coasters until my face turns blue and then IOWA later in the week where I will have no interruptions to finish some paperwork. Then the next week it's up to Chicago for surgery. I'm just ready for it. I want it to be over not because of the surgery but because I'm tired of dealing with other things. (I'd rather not get into it right now.) I'm very ready for the surgery and that doesn't bother me a lick. I know it's the right thing I just sometimes wonder why God has given me other things to annoy me while I prepare. I thought he wanted me to be strong and set for this but apparently he is trying to teach me a lesson that I just haven't yet figured out. Maybe that lesson will reveal itself before surgery and maybe it won't. Either way, I know what I must do and that is learn some tolerance. Tolerance to accept that not everyone thinks or feels the same way and we have to accept that difference even if it is showing itself in a situation you should have a say in.

Ok, enough of this. 13 days and counting. WOOHOO!!!

Four Spokes of the Wheel

I hope the title of this post makes sense once you read through this. I guess I've just been in one of those emotional states lately that it feels I have to justify every decision I make. I know that this is because of some "unfinished discussions" that have taken place and will probably never be brought up again but I just feel the need right now to prove that I am a mature adult capable of making my own decisions even if some feel I do not yet have the "life experience" to make this type of decision.

(Ugh, sorry that sounded way more irritable than I intended but I still think it's good.)

Since I was first diagnosed with a brain tumor, I have used every resource possible to determine what the "right" decisions are. I am not one nor will I ever be one to blindly accept answers given to me by doctors. I believe they don't call it practicing for nothing. A doctor is no different than you or I, he has just been trained in a specialty. (Just as you are probably trained in yours) I value the knowledge and training they bring to the table. Trust me, I wouldn't want just anyone working on my brain so I value their training wholeheartedly. However, I also know that there is no professional in any profession that knows everything there is to know about it. In most areas you are either the "Jack of all trades and the master of none" or you are highly specialized in one specific area. (For instance, I am the Jack of all when discussing computers but I am highly specialized in Microsoft Office.) All this means is that a doctor does not have all the answers nor are they necessarily intimate with all the options.

With that said, I have based my decisions and research on four areas or spokes if you will. Medical professionals, Internet research, Blogs, and Support groups (particularly online). Each area brings something important to the table. A well-informed decision could not be concluded without all four areas. Now let me explain a bit about each one.

Medical Professionals - These guys bring experience, education, knowledge, and the specifics to you. They are the ones that can tell you that your MRI appears to be a 4cm tumor with blah, blah, blah. They are the ones that can give you the technical details to the questions you have. Of course, they are also the ones that will provide the treatment you receive. However, other than the rare cases where a doctor is also a brain tumor survivor, they can not tell you with experience things such as: How painful will the surgery be? How hard was it to get a brush through your hair? Will there be personality changes? Yes, they can give you the "text book opinion" but unless that person has actually been in the shoes of the patient, they can't give you first hand knowledge. I wouldn't want someone who has never built a computer before to walk me through it. I'd want someone who has first hand experience at it. The other limitation with doctors is they only have experience with what they know. And that's the case in all professions.

Internet Research - The internet brings the knowledge gained from any place in the world. You can tap into medical information from China or review experimental medical procedures in the UK. You might "stumble" across something that you doctor has never heard of yet might be that "miracle cure" you are looking for. However, the Internet has its flaws in that you can't always believe everything your read. Sometimes things that are merely opinions come across as facts. However, you wouldn't even know it's possible without seeing it. You then take this information back to your doctor and you never know. (Remember I would have never been introduced to Gamma Knife if I had not used this avenue. Yes it ended up being not an option for now but it is still something to tuck away for the future.)

Blogs - The day to day roller coaster that is the world of brain tumors. Blogs give you that inside look on what is really going on in the world of a brain tumor survivor. Sometimes they are hard to read because it tears you apart to see what they are going through. Sometimes it makes you see which path makes more sense. Still other times it makes you realize that this thing can be defeated. A blog is a first-hand perspective on what the future holds. I can't go to blogs and ask questions. I can't get explanations of major medical issues. I can draw strength from them, understand things I may be going through, and understand what is normal.

Support Groups - I have two main groups of support. I have the "patients" and the "supporters". The patients are my online support group. They are the ones I can ask real questions to and get honest answers. These guys have gone through it. They aren't reading the answers in a book or giving an opinion. They KNOW how painful a procedure is or what the undocumented side affects are because THEY HAVE BEEN THERE. They have already been where I stand today. If a doctor tells me something but my support group says something else and it is related to what the patient deal with... I guarantee you that I will take the opinion of the support group. In my feeling they are the plain and simple no holds barred truth. They are not in it for anything but to give answers. If they say something that convinces you to not do a treatment, they are not out hundreds of thousands of dollars. If a doctor does, he's out money. So tell me, which one has reason to not tell you to gory details?

The supporters do not add brain tumor knowledge but rather they give their thoughts on the situation but regardless of what you decide they give you their full support. These are very important people. They don't push their ideas on you, they don't tell you what to do, they don't pretend to know what you are going through, and they don't get mad when you don't include them in an important decision. This makes these people extremely important because they realize that the only one that can make these decisions and the only feelings that matter are yours. They make a patient feel special because they don't have to justify their decisions and they are allowed to maintain their privacy and dignity because the person understands that the patient is what is important not them. As you can see, I wouldn't be writing this entire post if everyone around me fell into this last category.

These four spokes are put together by a wheel. The wheel is actually more than just one piece. It is me, my caregiver (John), and God. God makes sure I am able to find the information available to me, he assures me that I am on the right track, and he guides both John and I's heart.

Anyway, I hope now you can see how each of the four spokes makes the wheel go round. Each is important and without all of them, I would not be able to make the decisions I have. Knowledge is power and that knowledge is found in many different places. Sometimes you just have to be willing to look outside of the box.

I'm sorry this post ended up a little on the bitter side but I just felt some things needed said. I'm sure the people this is directed to will never read this but if they do I hope they are able to see where I am coming from. I am not making a "fly by the seat" decision. I have not taken the first opinion I hear and running with it. I am making a decision based on every fact I can lay my hands on and sometimes it is hard to accept that even someone as young as I am can make life altering decisions.

Ok, time to wrap this up. *Huggles*

I'm on the Right Path

As much as I sometimes have my doubts that I'm on the right path, I know with subtle pushes from God that I am on the path he wants me to be. He is with me each and every day and he is giving me the gentle nudges I need when they are most needed. He has been determined to not give me the "painfully obvious" sign that I have looked for from day one but I have no doubt that he is giving me the signs I need when I need them to push forward. How do I know?

I have had thoughts of changing my mind a few times over the past few weeks. When things don't lay into place the way I want them to and my mind gets into a "what in the heck am I doing?" phase. Well, each time I get this way, God sends someone or something my way to gear me up again for the fight. It's like when a team has lost heart and out of no where the fans start cheering. It gears them up to go out there and fight again.

Last night, it was a call from a tumor buddy. I was really struggling and really ready to back out but my tumor buddy called me out of the blue. We talked. We discussed surgery. We discussed our thoughts on diagnosis. Through it all she reminded me that she is happy that I am doing this because she worries about what may be going on up there. I guess that is the kind of kick I need now and then. I have said from day one that I don't give a rip what is in my head. I really don't. Whether it is a grade one or a grade four I don't care. But I know that there are many people out there that are worried about what it is. They need to know so they know how to help me. Truthfully, I know that I need to get ahead of this thing and get it before it gets me but that doesn't make the decision any easier. That's why God has sent me angels each time I need that reminder.

Besides, His angels reminds me that he is holding me during all of this and that he will be right there beside me through it all. I will get through this with the help of God and all of my angels. Some signs don't hit you upside the head but are given to you gently and silently. *Huggles*

We're at Five Weeks Now

Five weeks from today is our planned surgery day. Am I nervous? Yeah, I'd have to say I am. Am I ready? Not really. I still have a lot I need to finish. Am I going to beat this thing? Hell Yeah!!!

It's been a somewhat rough emotional roller coaster the last week but I'm as ready to tackle this thing mentally as I'll ever be. I sometimes have my doubts but, who wouldn't?

There's a Soccer Game Tonight

Our son plays soccer for the YMCA and tonight their coach is going to be holding a practice disguised as a parent/kid game. I look forward to it. Our son hasn't played in a whole lot of sports so this will be the first one of its kind. I remember all the times in sports that we played against the parents, teachers, or others. I am pretty sure that the "adults" always let us win just as we will probably tonight but it will be a lot of fun all the same. I can't wait.

However, this first parent/child game is also a bit on the bittersweet side because I don't honestly know if there will ever be another. They are telling me that after my head heals, I can do everything I do now but I have to keep in the back of my mind that it might not be the case. I mean honestly, is it truly safe for me to play sports such as soccer after I've had a piece of my skull removed? Maybe it is but it just seems a bit... odd. I don't know. I trust my doctor but I have to believe that after this surgery, whether I like it or not, my life is going to be changed forever. *sigh*

Ok, I'm getting off this subject. Wish me luck keeping up with a bunch of 11 year olds tonight!!!