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!!

A Fitting Phrase For Me

I received this in a piece of email from a site I subscribe to called: gratefulness.org. I thought it was a very fitting message that describes my life over the past two years.


"Though you may not be able to change it, you can handle an ugly situation beautifully."

-Pir Vilayat Inayat Khan
Alchemical Wisdom

What I Am Thankful For!

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

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

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

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

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

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

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

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

*Huggles*

Trying to Keep On Track

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

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

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

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

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

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 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!!!)

I Really Screwed Up BIG-TIME

I'm sure my son won't take this as hard as I am but I feel like I really took something major away from my son this week. I just feel like a bad mom right now and I'm hoping that by putting it out there for the world to see, maybe, if even a little bit, I can get rid of the guilt that I have right now.

Let me explain.

My son has always done really well with his woodworking projects for 4H. Monday was his 4H show where he showed his bow rack that he made for his woodworking project. He had already talked to the judge and they were probably less than a half hour from awarding the purple ribbons and announcing who would go to the State Fair. However, we decided to leave, thinking that if he did get it, we'd find out.

Well, I did find out yesterday afternoon when his 4H leader said something to us. He won the purple ribbon and State Fair delegation. However, the sign-ups were Monday afternoon and we had missed them. (I honestly had not looked into what had to be done for State Fair sign-ups because I didn't think we would be going so I had no clue it was that afternoon.) I called the extension office this morning and entries had to be turned in by 1 PM yesterday.

My heart sunk instantly. I feel like I took a possibly once in a life-time experience from my son because we didn't stay at the show another 30 minutes or so. It's not like I even have a good excuse. I felt fine. We could have easily stayed. John did have to return to work and we had work to do at home but none of that was as important as what I took away from my son. I feel like a horrible mom. Did I even try to see if he had won anything as the week progressed? no. I failed. I was too caught up in work and things that needed to be done.

Well, I'm not sure this whole thing has made me feel any better but at least I don't feel on the verge of tears now. I just feel so bad that I took this opportunity from him. He was so proud of his project and all I could focus on was the fact he waited until the last minute... again... to finish it and that there was a run on one side and the bottom had paint from the tarp it dried on. I was focused on the wrong things. You'd think by now I'd know that none of that is what is really important. *sigh*

I'm sure he will be ok with the news. The purple ribbon to him is just as important as going to the State Fair. I'm not sure he's actually ready for that maturity wise anyway but it would have been a good experience for him.

Do you ever sit back and think to yourself when you have been less than what your child deserves, Is this how he is going to remember me when I'm old and grey? I'm having one of those moments right now. I feel like I've already robbed him of so much in his youth that this is just one more moment we've lost forever. I mean it could have been very rewarding in the shadow of what we have all gone through over the last year.

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!!!

Poem - Fly High Little Ones

To start this post, if you are not a long time reader of my blog, I encourage you to read about another amazing little boy who touched my life very early on in my journey. You can read about King Julian here and here.

I have continued to follow Julian's Carepage as his mom let's us in on the world of Childhood Cancer and her own feelings as she copes with the loss of her baby. She is an amazing woman. This morning she made a post about Coleman's Celebration of Life in which she was able to attend and she shared with us a poem she had written after Julian earned his wings. She has granted me permission to share it with you as well.

The Day I Buried My Son
By Mimi Avery

The sun was beautiful that day
The wind pretty chilly…
People came from afar,
To celebrate his life.

He was so little
But his heart so big,
He touched so many ,
He helped them find God.

His smile was like no other,
Brightening the darkest souls,
His eyes shared the biggest secrets,
On how life was all worth it.

But on that day ,
That cold but sun filled day,
Our hearts were aching,
His eyes were closed.

Smiles only appeared thru tears,
As we stared at his sweet face.
We were all standing together,
With very little understanding .

Why do loving little boys,
Full of beauty and strength ,
Have to leave theirs mothers,
fathers and brothers way too early.

Balloons went up to Heaven,
Faces turned up to the sky,
Beautiful, bittersweet times,
Fly high little ones…

Surrounded by so many ,
Friends, family , strangers,
All gathered around…
Why this overwhelming feeling of loneliness?

The sun was brightly shining ,
The tears freely flowing
My world stopped turning,
The day I buried my son…

Posted in honor of Julian Avery and Coleman Larson

I know many of you have been following Coleman's story with me. For those that want to help do something about it you can join the fight by joining or supporting the following sites:

People Against Childhood Cancer (PAC2).
CureSearch
People Against Childhood Cancer
Alex's Lemonade Stand
St. Baldricks
Rally Foundation for Childhood Cancer Research
Childhood Brain Tumor Foundation
Texas Children's Hospital
Duke University Medical School
Issac's Foundation - Sign the Petition for Gold Ribbon Support
LIVESTRONG

The Things I Never Imagined

Just something a little fun this afternoon.

Twenty Years Ago:

I Never Imagined...

• That I would be in any profession other than teaching.
• That I would have a child.
• That I would be married by the age of 18.
• That I would ever be heartbroken that I only had one child.

Fifteen Years Ago:

I Never Imagined...

• That I would have a son who will soon be 12.
• That I would be working on my 13th year of marriage.
• That I would have as many friends online as I do in real life.
• That I would be able to stand up in a crisis and be strong.

Ten Years Ago:

I Never Imagined...

• That I would not be the mother of twins one day.
  
• That I would still be working at the same company that I started as a temp.
• That I would one day dye some of my hair purple.
• That I would have any need to question if I would see my next decade birthday.

Five Years Ago:

I Never Imagined...

• That I would have to deal with anything worse than the year I feared a heart issue.
• That I would ever willingly cut my hair above my waist.
• That I would ever have a surgery and go into it with peace.
• That I would ever have to deal with something like brain cancer.

Two Years Ago:

I Never Imagined...

• That I would research brain tumors until it hurt.
• That I would ever handle a serious diagnosis with what would be called "grace".
• That I could emotionally handle not knowing what tomorrow would bring.
• That I would be proud of a half inch of hair.

One Year Ago:

I Never Imagined...

• How much people I've never met would impact my life.
• That I would agree to and survive radiation.
• That there was a possibility that "chemo" would become a daily word for me.
• That I would be happy to hear the words, "It is just necrosis."

Ok, so this wasn't much but honestly it's just something fun I thought of. There are many other things I could have put in here but those are just four of each "signature" year.

Did 2008 Start Like This?

I closed 2007 with the following:

Part of me is happy to see 2007 go away but part of me is scared to see what 2008 may bring. There has been many times when i say to myself that "things can only go up next year" only to be proven wrong. I no longer assume that anything can be the bottom of the line. Things can always get worse. This is not a pessimistic outlook on life, rather it is my coping mechanism. By being able to smile through the lowest points of my life, I know that I can keep positive and smile through the next year, be they better or worse than the previous year. That's the secret of life... smile even when you don't feel like doing it.

So here is a big cheers to the end of 2007 and all the obstacles that stood in my way this year. I smiled through them all and now it's time to start a clean slate in 2008 and smile through whatever may come my way. Regardless of what crosses I must bear this year, I will come through on top, with my spirits in tack, and my future in hand.

I'd have to say I hit 2008 pretty close with it. That doesn't answer my question though, did 2008 start like 2009?

Well, in short I was still adjusting to the fact I had a brain tumor and right at the end of 2008 I had an MRI that had a big question mark in it. I was mentally beating myself up and had so many decisions to make I wasn't sure where to begin. I took them on with all I had and really it didn't start too awful bad.

So what about 2009?

At the very, very start of 2009 I thought this year might be a really good one. We were coming off of some nice and quiet holidays with family. We had made it through a very tough year relatively unscathed. Then the bottom dropped out on the fifth day.

On January 5th a five year old boy that had brain cancer, joined the angels in heaven. He was a very strong little boy and I admired his "Nevva gib up" attitude as he journeyed through things I can not even imagine. I followed his story from the time I was diagnosed and watched him through chemo, radiation, surgery, stem cell transplant, and finally death. His death hit me harder than anything I could imagine. I'd never met him outside of the blog his mom wrote but he felt like a little brother to me. Godspeed, Coleman. I know you have the strongest and most beautiful wings and are now with King Julian playing a game of tag in heaven.


Then on January 6th another brain cancer crusader whom was a huge source of information and inspiration, lost his battle to a tumor that so much resembled mine. I was never as close to him as the little boy but his death reminded me that there is no cure for brain cancer. Godspeed, David.

As if that didn't make for a hard enough week, last night I FINALLY heard from my NeuroSurgeon. (It's been almost two months since my MRI and over a week since I sent him the results AGAIN.) He wanted me to be in Chicago on Monday for an MRI. After much discussion, I told him to stick it in as many professional ways as possible. Basically, his impression is that the tumor has regrowth even though others have told me they believe it to be necrosis (dead cells from radiation). I'm taking his opinion with a grain of salt because there is more than one reason I am seeing someone on Tuesday that will hopefully take his place. However, I can't deny that I fear the possibility of him being right.

I'm just now feeling good again and I'm really not wanting to jump into more treatment right now. I need to feel good for a while so I know there is a reason to fight. However, I have to do whatever I have to do. I suspect I will have an MRI within the week and what we do from there will be determined by that.

So, has 2009 come in as 2008 did, in short, yes because I have some big decisions to make early. In long, it's way to early to tell.

I love you all... Huggles

Another Angel Earns His Wings

I have just a short update this morning. Monday night Coleman earned his angel wings. Even though my heart is broken after reading this, I am taking the lead of his mom. His entire family have the strongest faith and they are remembering that he was God's child and they were simply chosen to be his family for the time he was here. I will share some of her words:

Coleman was an amazing child of God and we were so honored to be chosen as his parents.

He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.

A quick story. :)

One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.

If those words are not a sign of amazing devotion to God, I don't know what would ever qualify. His family is taking his lead in this and although they are hurting terribly they have chosen to turn that anger into action. May our world, as technically advanced as we are, spend some time trying to cure childhood cancer so that fewer of our babies have to go through the journey Coleman has. However, I am warm this morning because I know he is in heaven playing with other children who have earned their wings. To share the words of a beautiful little 5 year old, "some day I won't need NO more meds or pokes, wight mommy?” Coleman, today you will no longer have any meds or pokes. You are free to fly.

As a reminder, if anyone would like to visit Coleman's page and read about this amazing little boy, go to http://www.carepages.com/carepages/ColemanScott and sign up. I know his family will continue to update as they now start their journey without one of their sons.

Please keep Peggy, Scott, and Coleman's twin brother Caden in your prayers for strength and continued peaceful faith. GodSpeed Coleman.

Remember to hug and kiss your little ones today.

Love and Huggles

(After I have let the news settle in a bit with me, I will try to post a proper tribute to the wonderful little boy I have grown to know. The little boy so much bigger than his age.)

My Little Inner Strength, Coleman

Coleman on left, Caden on right with their Mom and Dad in New York

Ok, so I have mentioned this little guy a few times in the year since I've been diagnosed with a brain tumor. Some would probably say I'm wrong to dwell in the lives of these young soldiers who are traveling the same path as me, but in reality, when I feel I don't want to fight any more, I think of those who fight with all they have. One of these little pillars is Coleman Larson. The way I found his Carepage is quite a story on it's own but that isn't important in this story. What is important is that God sent me to him knowing that my strength could come from this little man's story.

I have received permission from his mom to share his story with you. I am honored to do so. Coleman's story began almost a year before my own, in September of 2006. Coleman and his twin brother Caden were 2 1/2 at the time. His mom describes his tumor as being the size of a tangerine which would be not much different in size than my own. After his surgery, it was determined that Coleman had a Medulloblastoma or a cancerous brain tumor that is a common type in children.

Coleman's second stop was chemo, which he took for a year. Unfortunately, he would have a relapse exactly one year after his initial diagnosis. This time there were two tumors and it had appeared in his spinal fluid as well.

This was about the time I began following Coleman. I prayed for him as he went through radiation (I'm working on a more detailed entry on radiation and when you'll read it you'll see how remarkable Coleman is to handle this as a "not quite 4 year old") and cried and prayed when he did his stem cell transplant. If ever I thought that my own journey was not worth fighting for, his process showed me that I could not give up.

Just a few months ago, tumors were found in Coleman's spine and it was found again in his spinal fluid. Coleman is now undergoing another form of chemo in the hopes of beating this beast yet again.

To take a section from Coleman's CarePage:

Coleman has taught us all that ATTITUDE and FAITH can make a big difference in how you choose to deal with cancer. HE has taught us the true meaning of determination. Cancer takes away so much, but it can't take away the amazing spirit Coleman has displayed each and every chapter of his journey.

Coleman says, "some day I won't need NO more meds or pokes, wight mommy? THEN I tan be NO-MAL!" Amen to that, but I don't think this kid will ever be described as NORMAL, he's way too special for that!

I don't think I could have given this small section justice but this is exactly what I've learned from Coleman.

I do need to give a shoutout as well to Coleman's Big Brother Caden. (He is 1 minute older than Coleman) Caden, like Coleman, is a gentleman beyond his years. I often read stories of how Caden will allow Coleman to get away with things, get him things, etc and you can tell how much he worries about his brother every picture you see of them.

The reason I put this out here is two-fold. One is to introduce you to the young man that has been my strength when I am unsure if I have fight left. The other is to introduce you to the real tragedy out there and that is Childhood Cancer. Please do what you can to help our littlest warriors.

*Huggles*

PS. If you find it in your heart, send a prayer up for Coleman and his family as they journey through chemo again.

PSS. Thank you Team Larson for your permission to publish your story!!!

Fate Intervened One Year Ago

It was one year ago today that my brain tumor journey unofficially began. You see, it was today that I ventured out a bit early to pick up my son from his summer camp a little early so we could get to the 4H office to drop off his project for the 4H window display. After doing this, we both were a little "energetic" when we got home so we decided to blow off some steam and toss the baseball around in the yard. We'd played for around a half hour or so and we were tossing some hard grounders at each other. Needless to say, I'm not 16 anymore and my reflexes proved it when he threw one that took a hop right of the heal of my glove. It hit me square in the left side of my mouth and it smarted pretty bad. I know I said a few choice words and we decided that was probably enough for the night.

Anyway, I didn't think much of it. I put some ice on my ever bulging lip and we carried on the rest of the night. The swelling stayed down and really it was just that nice fat lip feeling with a little numbness on both sides of my face for some reason. Again, I didn't think much of it. After a week, all traces of the fat lip were gone other than I realized that the right side of my face was very numb. So numb in fact that I burned the tar out of my mouth eating chili because I didn't realize that it was hot. The inside of my mouth was numb and I didn't realize it. Since I had a history with a whiplash type injury in my neck, my thoughts immediately went to that. I figured I had messed something up in my neck when I was hit. Sooooo... off to the chiropractor I went where we decided it wasn't my neck but rather what appears to be an inflamed trigeminal nerve. Thus the start of my journey began.

Fate made us play baseball that afternoon. Fate made that ball hit me in the face. Fate set off the chain of events that would eventually lead us to where we are now. My angels were looking out for me that day.

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*