Medically - Nothing new on the medical front. We've entered the calm between MRIs so unless I have a doctor's appointment for something else, it should be a quiet few weeks. YEAH!!!!!
Emotionally - I won't deny that this has been a tough week emotionally. I'm not going to go into details here because I wrote a whole entry on it yesterday. :) I'm hoping the weekend is what I need to recoup my mind and hopefully come to terms with the remainder of what is bothering me. I'll have a good report next week... I hope.
Mentally - I can't honestly say that any forward progress was made this week. The best progress was in some conversations John and I had and I am not more confident he is actually grasping things. He's a kid at heart and would sometimes rather deny something is wrong than to face it but I now know we are on the right track.
Physically - The sinus pressure has returned AGAIN and I'm still fighting the shortness of breath from the bronchitis but otherwise I'm doing ok physically. I am hoping to do some walking tonight to try to finally get the workout going again. I hope to report that I did my walking all week when I give my update next week.
Family - We have a lot of activities planned for the weekend but I plan on having some family time as well. We'll see how it all works out. My son has been doing well lately and I think he deserves something fun. We have scheduled his bowling birthday party for the 9th so that should be fun and something for him to look forward to.
Play - John and I have been watching a lot of CSI lately. I've always liked the show and didn't realize how much of the Las Vegas series I had missed. I just like that one the best. I like the characters and the dynamic they bring to the table. Ok, I admit it... I think Grissom is awesome!!! (and not just by looks *wink*)
We have a busy weekend with a 4H thing and square dancing so I won't be around here much.
Talk to you all soon. *Huggles*
Friday, February 29, 2008
Medically - Nothing new on the medical front. We've entered the calm between MRIs so unless I have a doctor's appointment for something else, it should be a quiet few weeks. YEAH!!!!!
Thursday, February 28, 2008
I will not deny that this has been a rough week so far emotionally and for no reason other than I'm just trying to stay above the water. I think it is a combination of the weather, the continued fight with this sinus pressure/bronchitis, a lack of motivation, and reality that has me here.
I am sure the weather has been a huge instigator. I hate not being able to step outside if I want. The cold air aggravates my bronchitis so doing so is not a good thing for me. Even if I did go outside, what's there to see? Yes the snow is beautiful... the day it falls but then it quickly becomes nasty and slushy. Heck this last snow we had never did get that beautiful look because the ground was so wet it went instantly to slush. I am ready to see the flowers bloom and the trees come back. I am ready to sit out on the front porch to write my blog again. Soon enough I hope. We are supposed to be in the upper 40s to lower 50s this weekend. I just hope it stays there and doesn't end up in the teens again next week.
My sinus/bronchitis issues continue. I've been fighting them in one degree or another since before Christmas. Bronchitis really sucks when you get it ongoing and yearly. My son and I have both been down with it most of winter and only spring will end it for us. Come on Spring!!!
The lack of motivation comes as no surprise. The timing is definitely normal and with feeling cruddy from the sinus it is pretty much expected. Otherwise, a ton of things are probably not helping the issue any when you look at everything going on in my life right now. I'm hoping to nip this in the backside again real soon.
Reality is probably weighing on me as much or more than anything else. The reality has always been there it just sometimes is a little stronger. Every now and then I get into swings where I start down a new avenue of thought and this just happens to be one of those times. The avenue isn't always a bad one to explore. I would have never discovered Gamma Knife if I hadn't explored its avenue but sometimes it is tough to read what is before you and realize that it all applies to you. So what has been my latest avenue? Something I probably should have explored long ago... How to cope with the changes that are likely to be caused over time with my tumor. Don't read this wrong. I don't feel there is any need for this at this very minute but at the same time the reality is that I have something in my head that can be as large as 6 cm and it's not causing me any problems yet. When is it going to start? It could start years from now, months from now, weeks from now, or tomorrow. I am one that likes to be prepared. Thus why this is something I NEED to do NOW. When I am done doing my research, all will be well and I'll continue to not think about it. In the meantime, I just need to deal with my current reality and continue to take steps forward.
I won't lie and say that is the only reality currently affecting me. There are others, based off decisions I have made, that are also sinking in right now. Recent events have just brought them to light.
Ok, this is sounding more depressing than I really am so it's time to end this download. *Huggles*
Monday, February 25, 2008
I could post this as a reply in my comments but I haven't had a whole lot to write lately and this way I am hoping she will see it.
Thank you for your comment on my earlier post. I am glad you found me in your searches. It is knowledge and awareness that is one of my prime reasons for writing this blog. I know the 38lemon site that is listed on the right hand side of my page has been a huge help to me and I hope mine will do the same for others.
I am very sorry to hear that your sister has joined the club no one wants to be a part of. However, I have learned that although it is a scary diagnosis, there are many people living good lives even in the wake of such a diagnosis. I have learned throughout the last six months that there is a fear associated with the words brain tumor. It is something that can instantly bring others to a gasp and, unfortunately, the first thing most think about is the worst. This is not always the case and it is a fightable disease.
Your sister and your family will be in my prayers that surgery goes well on the 11th and she makes a speedy and full recovery. I have seen many come through surgery and be back to themselves in a short time. I am going to pass along some resources to you and your sister if she is interested.
First is a yahoo group that is a fabulous source of information and support:
Second is the site I mentioned earlier. David has been through a lot and his website has been a source of information for me.
Third is my direct email. I have not put my actual email here but I think you can figure it out easily enough. (my name)email@example.com Feel free to email me and we can talk more detailed about things instead of typing out here. As you can see, I am pretty open about talking what is going on in my life. Trust me when I say talking about things is a huge relief.
I hope the doctors are correct and your sister's tumor is a low-grade glioma. From my understanding, it's not a bad tumor to have. Did your sister have problems that led to the diagnosis? How large do they believe it is? Is she holding up well... I know I know... considering?
I look forward to talking to you more here or by email.
Your family is in my prayers.
Friday, February 22, 2008
Another mostly busy week.
Medically - On Wednesday I received the official results that my tumor remains stable. This was overwhelmingly wonderful news since the last MRI had a big question mark over it because of the change in the coil. I didn't write about this previously but I also had a bunch of interesting conversations since my last MRI and I feel I have a better handling on what is truly going on up there. I won't go into details but I will share another photo of my MRI.
It is my understanding that these photos actually make more sense than the darker images. I am not a doctor so I don't really know but I know these lighter pics do show more the scope of what we are dealing with.
Anyway, Wednesday I also took another visual recognition test. It is my understanding the scores were not high but until it's been officially graded, we don't have anything for sure.
My bronchitis continues, I've had a runny nose most of the last two days, and I felt crappy enough on Tuesday to go home early but other than that I'm feeling pretty good physically. I've had some sneezing again today so I'm guessing we had just enough warm weather to spark my allergies and now that it's cold again I'm hauling downhill very quickly. I will get to rest most of the weekend so hopefully by next week I've got this thing beat. If not, I will try to get into my doctor Monday or Tuesday.
Emotionally - This was a rough week emotionally although I feel like I kept it together quite well. It was tough waiting to get the official results of the MRI since waiting at this stage felt like I was putting life on hold. There was just to many ranges of unknown for this MRI. However, I got the news I wanted and it truly felt like a 50 pound weight was lifted off my shoulders. I feel lighter than air now and it is carrying me through the end of the week. John and I will be celebrating this weekend that is for sure. I need this weekend and probably the next couple of weeks to rebuild myself emotionally and then I'll be ready for the next big step in the World of My Brain Tumor. :)
Mentally - I didn't do a lot of physical things with preparing this week but I did make a lot of progress mentally. I have resolved myself to what has to been done and I know how to get there. I am more mentally into this game now than I have ever been and I don't plan on backing down from where I stand.
Physically - Since I am now off of the antibiotics, my trigeminal has gotten back to its typical "Am I really still having problems with it?" feeling. It is still there. I know it is since I still have a very dry right eye but I am so used to it at times it takes something crazy to make me remember it. (Like eating and not realizing that you have food trailing down your face. LOL)
I did not get back to working out this week like I intended. I felt good enough physically that I used what time I felt good to work on my house. My house has fallen apart since I came down with the bronchitis and it needs A LOT of work so I've put my energy in there. I guess that's better than sitting on the couch watching tv.
Family - The boys are both doing well. John is gearing up for the planting season since it is honestly just around the corner. My son is doing well with his school work for the first time all year and he seems to be growing up a bit. I hope he's finally getting there. I need to make some arrangements for a late birthday party for him. He wants to go bowling. With his birthday falling around valentines day, we decided to wait a few weeks to have his party. Now I guess I need to get moving and set a date.
Play - I've been spending most of my free time this week working on a slide show for my son's 4H group. We are having a big Grandparent's dinner and I volunteered to do a slide show with pictures of the kids, their projects, activities, etc. I have used PowerPoint several times in the past but this is the first one I've done with it strictly being aimed at a slide show. It's going ok so far, I just hope my lack of visual ability doesn't make it look bad. LOL
Test - I really don't want to say that I never even picked up a single one of my games all week so I will say No Comment instead.
So that was my week in a nutshell. I continue to look ahead to the future and be prepared for whatever life brings me. I know you have to play with the hand you are dealt and if you keep your heart about you, you might just surprise everyone including yourself.
Please keep the families of the teens that were killed last weekend in your thoughts and prayers. The next several weeks are going to be difficult for them as they try to reconstruct what caused the accident.
If you are in the MidWest (or anywhere getting poor weather this weekend) be careful driving!!!
Thursday, February 21, 2008
The six month anniversary of finding my tumor will be tomorrow. In some ways it is hard to believe that half a year has passed since the day my life changed forever. In other ways it seems like it has gone on forever.
Certain moments will forever be etched in my memory. The look in my doctor's eyes when he said "You have a brain tumor"; The question of the unknown that would quickly appear in everyone's eyes when I told them; The days of waiting; The overwhelming relief I felt when the first neurosurgeon told me that it was a small tumor that would most likely not cause me any problems over the course of my life; The discovery of Gamma Knife and the "miracle cure" I believed it to be; The sudden heartbreak I felt when I was told that it is possibly not as small as we were originally led to believe; The feeling of being lifted up to the clouds by all of my friends when I was ready to walk away from the entire thing; The comfort I get from those closest to me; The look in my husband and son's eyes that remind me what I am fighting for.
Some things never leave you and one of those things for me is the amazing support I have gotten from EVERYONE. You truly don't know how many times I have been pulled from the brink of losing it by a simple word or a hug from an unexpected place. Just today I wrote a post on a message group that has a lot of very good friends that has become family to me. I'd like to share a portion of that message:
I often find it improperly placed when people tell me I am handling my situation with admirable strength. Deep inside, I know that is not the truth. Anyone with the kind of support that I have, would be able to do the exact same thing.
Every time that I feel like the fight is not worth it or the stress is too much, I come out here and read posts from my FlyFamily and I can feel my faith being refilled and my heart feeling positive again. Whenever I feel like breaking down into a blob and just crying my life away, I look down at my purple bracelet and think to myself that I can't let those that care about me down. My personal strength carried me through the first several days of diagnosis. It took me through to the point that I had actual answers instead of simply words, but after that time, it has been the strength that I draw from all of you that has kept me strong.
Without my many friends across r/l and the internet and the wonderful tool I lovingly call my blog, I probably wouldn't have the composure to sit here and type out this message. This wouldn't be a post that shows strength, love, and determination. Instead, it would show someone who feels defeated by life and willing to step aside and give up on it. Yes, I would have stayed strong for a while on my own, but by the time that I reached this point I would have crumbled. Instead, what you are able to see is someone that is determined to beat this thing and actually feels like she has reason to. Someone that feels like they have a reason to fight because there are people that would miss her if she didn't.
If this post sounds depressed, don't read it incorrectly because I am actually quite joyful today. It has been six months since I was diagnosed with something that most people find truly terrifying. It has been six months since they discovered the thing in my brain that sends chills down most people's spines. It has been six months since I rediscovered the meaning of life. It has been six months since I reached out for support and received it back in tenfold. It has been six months that I have reached inside myself for strength I didn't know I had. It has been six months that transformed me from a stubborn young lady to a mature individual with a will to live. It has been a scary six months. It has been the wildest roller coaster that I have ever ridden on. It has been six months that has defined who I am. It has been six months that will carve out the path to the rest of my life.
Ok, enough of this. Remember, leave no stone unturned. Leave no word unspoken. Live each day to the fullest of your ability. Give a smile to a stranger or a kind word to a friend. You never know when it will make the difference in their life. I love you all. *Huggles*
Wednesday, February 20, 2008
I received the call from my doctor today. As I predicted, my MRI showed that my tumor is stable so I can breathe a sigh of relief for another 8 weeks. Actually, I'm breathing an even bigger sigh of relief but I can't really go into details right now. I promise, I will fill you all in real soon. I've just got to have some conversations and then you all will know what I've been thinking about the past several weeks and the real reason I've been so quiet of late. In a few weeks some major decisions should be finalized and I can finally give some back story. Honestly, I have my reasons, you just have to believe me.
So anyway, the tumor remains stable and that means I can remain in my current mode. I will talk to you all later when I have more time to write.
Sunday, February 17, 2008
Ok, so this one is late but I'm hoping it's worth the wait. It was a busy week so hopefully I don't forget anything of importance.
Medically - Where to begin, where to begin... I had my fourth MRI on Friday. At first glance everything looks good but I won't have the official results until Wednesday or thereabouts. I continue to pray that I am right and the MRI looks good. :)
On Tuesday I took a cognitive test and the results were interesting to say the least. It is our first "non-MRI" proof that there is definitely something wrong with the right side of my brain. The numbers are humbling. This is the first physical sign of any neurological deficits and it's strange because it still doesn't hamper me in life. This is probably because my mind has adjusted to this over the years and because it wasn't a sudden decrease in this ability, it was never noticed. It was never there so there was never a decrease. It will be interesting watching these numbers as my life progresses in the world of brain tumors.
My bronchitis continues. It was getting better for several days and now it seems to be going backwards again. I will give it another few days and if it doesn't start recovering again soon, then I will go back in for more meds. Yes I will wait if I can because I know the next step is the steroid Prednisone and I'm not anxious to go on that again. I am not a fan of it even if it does take care of the bronchitis. In the meantime, I continue using my inhalers and hope that it has plateaued and will go back down.
My sinus infection seems to have cleared up so that is a good sign. My tooth also appears to be healing quite nicely so that can be put to bed soon. It still has a small area that hasn't started healing over yet but as long as I keep food out of that area, it doesn't bother me. I can't wait until I can eat on that side again. :)
Emotionally - I won't deny that the week was an emotionally draining one. I haven't typically gotten nervous about the MRIs but with the big question marks from the last one, I won't deny this one had me worried. I came through it with the help of some great friends, however, and soon we'll have the official results of it and I can put it completely behind me for another 8 weeks.
Mentally - I made some good progress this week. I was able to get some more important documents sorted out and I have been able to reconstruct most of my list of things I still need to do. I have also laid out some plans for the future and written out what I am willing and not willing to do. Some of these plans will be in the near future, others are lifelong plans. I'll share them as time moves along. Right now there are still a few big question marks that need to be answered before I start sharing them.
Physically - I'm feeling much better than I did last week and my energy level has been back to a normal. I have always had very defined energy patterns and I'm just fortunate that my illness coincided with my natural low and now (even though I'm still fighting it) my natural high is stronger than my illness. I am hoping this high remains through the week and I can get things caught back up from being down.
I haven't been able to work out since early part of January. (It's hard to do cardio exercises when you are struggling to breathe because you are coughing with every other breath.) I am hoping to slide back in to at least my strength training exercises this week. We'll see if I'm able to manage or not.
Family - Everyone seems to be doing ok. My son is over his bronchitis/sinus infection and is back to his normal self. John seems to be avoiding the worst of sinus season so I'm hoping he gets through the rest. He's had a few flareups but nothing requiring a doctor.
We did have a scary event not far from our house Friday night. A truck with six teenagers in it was in a crash and four were killed when the truck exploded. The accident occurred about 2-3 miles from my house. I believe details are still coming out about the crash but it has been tragic for the community. Please keep their families in your thoughts.
Play - I'm tempted to take this section out because really there isn't a whole lot to write about here that isn't constantly repeating. Because of my bronchitis, we haven't been dancing because the activity is too much. I haven't even been on Puzzle Pirates more than a few times over the past several weeks and that was more to keep my employment labor alive than anything. Tribal Wars has probably taken the most of my time but... well I've got some decisions to make on that game. There will be more on that once I finalize them.
Test - Well, because of the long absence from playing, I will be hopefully starting this over this week. I need to come up with a workable plan so that I'm not taking hours a night trying to do this. I think I may separate it out into two of the testing a day so that it takes six days to get through all of the tests. That should help me keep it all down to 10-15 minutes yet still get in my practice and find good patterns. I'll work it out and report next week on it.
Anyway, it was a busy week and I'm glad it is over. We will see if this week is as busy or if it is back to a calm week.
Friday, February 15, 2008
It's late, it's been a busy week, and I'm tired so I'm going to make this a quick entry and I'll write the week in review tomorrow since it will take a while.
My MRI was today and it went well despite what might have been a slight reaction to the contrast. Nothing major just some minor breaking out. Anyway, I am not a doctor but side by side comparisons look like there is no change and this is a good thing. I won't have the official results for a few days but when I have then, you can bet you guys will be one of the first to know. We're hoping for no change and a continued nice and quiet tumor.
Well, I'm tired now so I'm going to bed. Talk to you all soon.
Thursday, February 14, 2008
As I am coming ever nearer to the six month diagnosis of the discovery of my brain tumor and I have caught myself looking back and thinking about all the many ways my life has changed because of it. Six months ago, John and I were still trying to conceive our second child, my biggest worry was how the Cubs would do, and everyday life almost felt like a nuisance. After August 22nd, all of that changed. Having a second child no longer became a priority but rather it felt like a burden, the Cubs season became a welcome distraction instead of something I truly cared about, and every single day became a gift that I cherished.
Beyond all of this, my diagnosis had some very positive things, none of which were more positive then the friendships that have developed and the warm feeling I get as I continue each step of this journey. This entry is for you... my friends.
Some give the listening ear when you just need to vent and whine, others give you that encouragement you need to make the next step, still others offer of their prayers with all of their heart. These are the people that support me through thick and thin in this journey and beyond. Without them, I'm not sure where I'd mentally be today.
Without further ado, I wish to make a special shout out to the following people:
Jessi - Now and forever my best friend
Jim - Much more than just a boss
Robyn - A new friend made since my diagnosis who has been a huge help to me when I am at work
Jennifer - A friend from online who has been there through much of this journey
Randy - More than just my therapist but a friend
Kate - My neighbor, walking partner, and friend
Katke - A friend from online who has been a huge supporter in this journey
John - My best friend, husband, and soul mate.
And everyone else who has supported, prayed, listened, and lifted me through out this process. Sometimes you really don't realize how many people's lives you touch until you truly need it and they show you how much you mean to them. I have been blessed with so many friends in my life and I value each and every one of you. I do not know where my journey will take me next but I know I will never be alone in it. May God bless you all.
Tuesday, February 12, 2008
Today I took the WAIS (Wechsler Adult Intelligence Scale) test of intelligence. It is a series of 14 tests that test your verbal and performance intelligence. Typically the verbal numbers would be indicative of the left side of your brain and the performance would be indicative of the right side of your brain. The results in this test didn't really surprise me but I find them very interesting.
In the verbal portion of the test I scored 124. This score is considered very superior and only 8 points from genius. (I will not get a big head from this number... LOL) However, in the performance portion (More based on visual cues) I had a test score of 93. There is a huge difference in the two numbers. I have always noticed that my visual acuity is not in line with my "intelligence" but I had not clue it was this much inferior. This isn't completely surprising since my tumor is on the right portion of my brain but it is an eye opener all the same. Who would have ever thought that my scores could be so significantly different? I know I wouldn't have believed it if I hadn't seen it with my own eyes.
So this test gives us a lot of interesting things to note and it will be interesting to see if these numbers change significantly over time. If they lower significantly, it would be showing the decline of my brain over time caused from my tumor.
Ok, for those that are interested, my comprehensive IQ ended up at 108 which is perfectly normal thank you very much. I will just continue to remember that my inability to judge distances, visualize concepts, and recall events is due to my tumor... oh and to stay in jobs that require brain performance not visual. :)
Monday, February 11, 2008
Friday, February 8, 2008
I apologize for not making an entry last week for the review but we had lots of nasty weather and I don't have internet connection when the weather is nasty so... Here is the review of the last two weeks:
Medically - Well, the bronchitis is doing much better now although it is still there. I'd call it a 3 now instead of the 8 it was. The sinus infection also continues to linger but it is also not as bad. It is more of an annoyance now than anything and more so because of the next thing. On tuesday I had my tooth pulled. Do you know how hard it is to not mess up an empty tooth socket when you are coughing and have a runny nose? Quite the adventure I must say.
Otherwise, I got the results of my personality test that I took and surprise, surprise, I am even keel throughout and right down the center. I guess that explains why I get along with everyone. Anyway, there's some much more specific things listed as well but I won't go into details. I'm just happy to know where I currently stand since my tumor is in an area that affects the personality.
I think the paperwork is finally on its way to get my next MRI scheduled. I am hoping it is going to be some time the week of the 17th. I don't really want to blow my son's birthday or valentines day with it.
Emotionally - I'm as cool as a cucumber and everything is going well. Honestly, some days go by where I don't think about the thing growing in my head at all. Some days I do, but for the most part I don't think about it.
Mentally - I haven't really made any progress the last two weeks since I've felt so cruddy. I hope to get started again this weekend since I am feeling much better.
Physically - Well, the antibiotics I was on made my Gabapentin almost useless so I had some reversal on my trigeminal numbness and tingling. Not a big deal. I've gotten so used to it I barely realize it is there anymore.
I will say my former tooth area has been bothering me a bit because they put a couple stitches in and it irritates the heck out of my mouth. Not a big deal. There is worse things in the world.
Family - Other than my son struggling with his grades, everything has been pretty normal. We are all just relaxing and enjoying each other. I like this kind of excitement. :)
Play - Well, I've been to sick to dance so really we haven't done much in the play category.
Test - I've been sick enough I haven't even bothered to do my testing. I hate that but I have seriously not had the energy or will to do anything the past few weeks. I'm so glad I'm starting to feel better.
Well, that ended up shorter than some single weeks. There just isn't much info when you are sick and trying to keep life as low key as possible. Next week should start getting interesting again because we have a few fun things going on.
Tuesday, February 5, 2008
That pretty much sums up the last five days here in good 'ole
Anyway, yesterday and today the fog has been horrendous. It was really horrible yesterday. You couldn't see but a few feet in front of you. Today has been much better but still not pretty. Luckily, the thunderstorms and rain last night melted all the snow so driving isn't as hazardous today. Now we are supposed to get more thunderstorms tonight and snow. Should make for another interesting week and unfortunately my internet may be touch and go so if I'm not around... I promise I'll update on Friday even if I have to stay at work late to do it.
Well, take care all. I'm off to get ready to have a tooth pulled.