This will actually be a two week review since Thanksgiving messed up my schedule last week.
Medically - We have finally gotten my EEG scheduled for December 6th. It will be a sleep deprived EEG (I'm not allowed to go to bed until after midnight, they want me up no later than five, they prefer only three hours of sleep, and no caffeine.) They have sent the precert through for my MRI, if all goes well, I'll have that Friday the 14th. Beyond that I am still taking the Gabapentin for the trigeminal.
I think I will add it here that I finally signed up for Medic Alert again. It's been at least 20 years since I have had a bracelet. I should be getting my new bracelet soon.
Emotionally - This has been a good two weeks emotionally. I've been told by a few people that I seem to be back to myself now so that makes me feel good. I've been focusing hard on doing my meditation every night and I think that has allowed me to sleep better. Overall, other than a bit of crankiness the past few days for unrelated reasons, my emotions have been steadily normal. :)
Mentally - I have had a good two weeks productively. I've been working on preparations, actual work, getting things done at home, etc which is something I haven't been able to grasp real well since the diagnosis. I am thinking much clearer and I don't feel so bulldozed anymore which is a good sign.
Physically - There has been no real change physically other than the sinus pressure still hanging around. Tomorrow is the first day of December so I think I've already gone longer than I ever have without a full blown infection. YIPPEE!!!
Preparations - Last week I successfully finished my living will, had it witnessed, and discussed it with my Agents. It is official. I will probably put out an entry on it some time next week. I have also began gathering information such as people to call, account numbers, financial information, etc. This will be a long process but it is something I need to do since I am the primary record keeper in the house and John has no clue what is going on. Finally, I have been working hard on decluttering the house and it is looking fabulous!!!
Family - Last week was Thanksgiving and we spent it with my Mom, Dad, Brother, Grandma, Uncle and his three kids and grandchild, and of course the three of us. We had a good time eating and playing games. Then on Saturday was my Dad's 50th birthday where we had a surprise party for him. We had a great time!!!
Play - It was really a quiet two weeks. We had the party on Saturday where we saw a comedian, danced, some drank, etc but other than that it was really quiet. We have dance tomorrow night.
Ok, I think that wraps up the two weeks. This wasn't very long for two weeks... it may be that if I don't have much we do every other week more often. We'll see. *Huggles*
Friday, November 30, 2007
This will actually be a two week review since Thanksgiving messed up my schedule last week.
Wednesday, November 28, 2007
On Saturday, when we had my Dad's birthday party, we had the privilege of watching the comedian Tom Morgan aka the Rajun Cajun. He was absolutely fantastic and had us all laughing hard. If you ever get a chance to see him, jump on it.
Anyway, he touched on many topics including a rant about Popeyes, women putting on makeup, and child raising. Some of the things he joked about made perfect sense in so many ways but when you think about it, it is funny. For instance, have you ever wondered about some of the quirks with putting on makeup? Why do some women put on so much blush they look like "they had a fight with bozo the clown?" Why do we blow on the end of a blush brush when we are putting it on? Have you ever looked at the faces we use when putting on mascara? Just funny little quirks like that you never think about.
I will say he is absolutely crazy when he is up there. He is all over the stage, removed his shoe AT LEAST three times, and was very animated.
I talked with some friends afterwards and they had talked about how they had gone to see him once with some "very religious" friends/family. If you fall in this category, Tom is NOT the person for you to go see. He is NOT the PG13 that the place had rated him as. Definitely R rated so if you have problems with minor curse words or hearing the f-bomb now and then, do NOT go see him. However, if you are a good-ole folk that believes in some of the old ways and can laugh at yourself, go see him as quickly as you can. :-)
Tuesday, November 27, 2007
I wrote this over a week ago and never found the opening for it. So here it is now.
It was buried among other lines meant to bring a laugh... and so it did. It's the truth and you'll see what I mean when you read it. However, it also spoke the truth in a very different way.
I've learned that the people you care most about in life are taken from you too soon and all the less important ones just never go away.
Can you see how this can be taken both ways? It sent a chill to my bones. So innocently placed yet so much meaning. Alas, I don't know which category I fall in with most of my friends, but I fear I'll be in that first one.
I'm sorry, I'm just a bit somber today for some reason. Sometimes, the smallest words can bring you to a new perspective. Therefore, I leave you with the words: don't sweat the small stuff, stop and smell the roses, and tell those people you care for how much you love them. I love you.
P.S. I don't know if the person that sent this to me reads this frequently but I just want to make sure you know, Thank you. It may bring me down sometimes but it is a reminder that life goes on. *Huggles*
Monday, November 26, 2007
I hope everyone had a wonderful Thanksgiving. We had a great weekend and we enjoyed some nice "play" time but we also got a TON done. I'm so sorry I didn't post at all over the holiday but I'll try to fill it all in now.
Let's see. Starting with Wednesday I guess. Wednesday night I was in a bit of a "down" mood and after we finished supper and the like I decided to have a few drinks. I won't get into details but let's just say that I can now honestly say that at 28 years of age I became drunk for the first and LAST time. :) I found out that Gabapentin (Neurontin) and Cherry Vodka don't mix very well. Surprisingly after getting sick a few times before bed, I felt pretty good for Thanksgiving. (Well, I didn't feel well either Thursday or Friday but I now believe that John gave me his ickiness and it was not related to the alcohol.)
On Thursday we went to my Mom and Dad's for Thanksgiving dinner. We had a nice quiet Thanksgiving and we sat around eating and playing games most of the afternoon.
Then on Saturday we had a surprise birthday party for my Dad's 50th birthday. It was really great and he was totally surprised. We had it at a local bar/comedy club and we got to see Tom Morgan the Rajun Cajun at it. He is absolutely fabulous. I might post an entry about him later in the week. We had a blast dancing with family and some of them worked hard on getting a little to polluted but that's ok... I think they all ended up finding sober rides.
Other than those things, we spent a good majority of the weekend with just us as family... oh and cleaning. We were able to finish the outside shed and put everything but the aluminum cans up. We'll have to load those in John's truck for him to take in next week for recycling. Then we worked on the "former baby, current garage sale, later game" room. This room was a total disaster with lots of baby stuff everywhere and it's getting piled in now with stuff for a garage sale next spring. However, we can now walk through it and I will be able to sit back there and sort through things all winter. After we finished getting this room done, we were able to go through the back area of our Great Room and move all the garage sale stuff that was there into that room. So now my Great Room looks like a family room instead of a garbage dump. YAY. It was a lot of work but it is so nice to have it done. We took out about 9 garbage sacks of crap from those two areas.
On Wednesday night we watched "Teenage Mutant Ninja Turtles" the movie but we weren't too thrilled with it. We intended on watching another but we never got around to it. OOPS. Then last night we played a game of risk after we were all done with supper. I won. We played mission and I was able to get all of Africa and N. America before the others could get theirs.
So overall, I'd say we had a wonderful weekend and it makes me look forward to the long Christmas holiday. I have a ton to do between now and then but we'll be able to just chill after Christmas is all over. I am having Christmas at my house this year for the first time since we moved out here. And I haven't started my Christmas shopping yet which means I'm about a month behind. YIKES!!! I'll probably do what I can online but I have to figure out what I'm going to get people first. Maybe I'll just hand out coal this year.
Well, that's enough rambling for now. I may go into more details on Dad's birthday and maybe a few other things later in the week. I don't want to overdue things and not have anything to write about. *Huggles*
Thursday, November 22, 2007
Wednesday, November 21, 2007
Tomorrow in the USA is Thanksgiving day. It is a day set aside for us to give thanks for the many things in our life and most of us enjoy a large feast with our families. Too much food aside, this is my list of what I am thankful for.
I am thankful for my family who is with me each day, shares in so many areas of my life, and whom I can enjoy the good times with.
I am thankful for my friends both online and in real life that have given me so many wonderful memories.
I am thankful for God who has given me 28 beautiful years of life and hopefully many more to come.
I am thankful for my health, both good and bad, that has reminded me that not every day is lined in gold and rather you should live each day like tomorrow will never come. Yes it seems odd but I am thankful for the tumor in which I share my head with because it reminded me that life can be taken away at the drop of a coin. :)
I am thankful for my Son who reminds me each day that youth is beautiful and some of the best gifts we receive start out in small packages.
I am thankful for the blessing I've received in living my life each day with my true love at my side. I know that not everyone is blessed enough to ever find their true love and John is that and so much more to me.
I am thankful for my life, my health, my family, my friends, and each breath I take. What are you thankful for?
Tuesday, November 20, 2007
I believe there really are people that read my blog that know me in real life. Some of you I have probably seen. Others haven't seen me for a while. However, I have had more questions of late about the newest additions to my wardrobe so I figure now is a good time to explain them so that I can satisfy your curiosity and perhaps give you an insight on what keeps me sane some days. (Ok, so I'm never sane so just my normal level of sanity however low that may be.)
First off, what I am referring to is a purple stretch bracelet that I wear on my right arm and a grey stretch bracelet I wear on my left arm. The purple one says "I'm Flying" and the grey one "Sharing Hope" and has the American Brain Tumor Association's website on it.
I can hear the question already... what do they mean and isn't having a brain tumor bracelet a constant reminder of what is in your head? I'll answer these both... one bracelet at a time.
You see, early on I did not hold up very well and even though I hide it well, I was very emotionally vulnerable all the time. One day I was cleaning my Master Bedroom and I found my purple "Flylady" bracelet that I had bought many years ago. I had looked for it before and had a hard time finding it, so this was almost like a sign. I immediately put it on and felt warm. I felt warm because it reminded me of all my friends that were out there praying and thinking about me. So what is Flylady? Well, you can check out Flylady to see for yourself. It is a group that was developed to help SHEs (Sidetracked Home Executives) keep their spirits up and dig out of the clutter we have all found. (Basically it's for those that can never seem to get ahead and it is very sensible in the approach. However, this is more than I wanted to get into about Flylady in this entry.) Check it out if you are interested. Anyway, I've been a member of the group for about 6 years now and we have group boards all across the country. One of the boards is for Illinois and I have met many wonderful ladies there. We help each other through many obstacles in life. So this is the connection between my friends and the purple Flylady bracelet. It reminds me not only of my Flylady friends but of all my friends that are rooting for me.
The grey bracelet came later. I learned that grey is the universal symbol for brain tumors. Yes, I know, it's that reminder thing. I bought my bracelet at the American Brain Tumor Association Website. However, to me it isn't a reminder that I have a brain tumor. Instead, it has become a reminder that life is short and you need to enjoy every minute of every day. We never know when our lives or our loved ones will be taken from us. So we must cherish each day, say what needs said, leave no rock left unturned as we make our journeys each day. It's my reminder to grab the moment and never have any regrets. It's the reminder, when the day is hectic, to stop and smell the roses or watch the falling leaves. It's the reminder to live.
With the assistance of these two bracelets, I have not let anything block my path in life and I am never alone. Even when I feel that my heart is ready to break, I have this little reminder that I'm not done living.
Do you have a reminder to live? :)
Monday, November 19, 2007
When telling my story and talking about my three opinions, one of the first questions I typically get is: "How can they not know how big it is?" Well, here's the answer illustrated to the best of my abilities.
The picture on the left is of the lower portion of my brain. It is mostly normal. As you can see, other than some minor areas where there are creases in the brain (this is normal), it is consistent. This is what a brain should look like throughout an MRI scan.
The picture on the right is my brain where the tumor is located. (The right side is on the left) You can clearly see an area pointed out by the black arrow that is more than likely tumor. It is almost perfectly round, has well-defined edges, and is about 3 cm by 2 cm in size. Easy enough, eh?
The question comes in when you look at the area pointed out by the green arrow. This large area around it is also discolored but what is it? Is this tumor? Is it edema (swelling)? Just what is this area? That's exactly what we are hoping to find out at some point. In looking at the scan and looking at the fact I am having no symptoms from this, you want to believe that only the small area is tumor.
However, when you look closer, you see that the brain has been pushed from it's center point and there is pressure occurring on the other side because of it. The brain should have a straight line going up through the center of it dividing the two lobes. My brain does not. This is squishing occurring because of the tumor. Looking at it that way, it doesn't seem possible that the smaller tumor could do that much pushing and you notice that the pushing starts down where the larger area is.
Ah to ponder the human brain and it's amazing abilities. If indeed it is as large as the second mass, I have to ask myself how I am still functioning day to day. It's hard to imagine that something the size of an orange cut in half, can be placed in something the size of a cantaloupe and not cause enough damage to have some signs. I guess my brain is just doing it's job and rerouting as it sees fit. :)
Maybe this was a bit TMI for some but I do hope this helps clear that question mark in your mind about why there can be a question as to the size of my tumor.
Sunday, November 18, 2007
AKA, Game plan
If you haven't yet read the post "A Weight off of my Shoulders," you should do so before reading this one. Otherwise, this post may not make a great deal of sense to you.
Now I'm not totally unreasonable. I do realize that there is a point in time where my quality of life will lower below that 100% and there is a good chance that lowering will be caused directly by the tumor. I'm sure when that happens, I'll get a lot of "I told you so" from some people but that is a chance I'm willing to take. I have told John that I have drawn a line in the sand of what it means to me to be below 100% when it comes to the tumor affecting me. Here's what the line is:
1. Grand Mal Seizures
2. SPS (Simple Partial Seizures or Petit Seizures) that develop to the point that I can no longer live my life in a meaningful way.
3. A headache that develops and floors me for more than 48 hours or recurs for more than two weeks. (two weeks because sinus and neck problems have been known to do this to me but not usually longer than that time frame.)
4. Paralysis on my left side.
The only thing that would convince me to do it without my quality of life being affected below that barrier is a change of more than a cm in a one year period. I know that this would mean it is growing faster and it's a now or never slot.
Now, by waiting for these things to happen, I have a little more leverage when going into a surgery. One it is no longer elective. Two we have proof that there is probably more than a Grade One tumor up there and thus I can more easily convince a doctor to do a full resection instead of just the biopsy. I don't see the point in going in there once, taking a sample, finding out it's a tumor of a higher grade, and then turn around and do it all again. They have to realize that this will be a one time opportunity and if they don't take what they want the first time, they won't do it again.
So by waiting, not only will I be able to feel that it is time to do this, but I will also have a little leverage in doing this thing the first time.
I have promised John and I am telling you all now, that if any of the above occurs, I will be in surgery as soon as the hospital can squeeze me in. In my heart I know that there comes a time when you have to sacrifice a bit of your quality of life for the greater good. When that time comes, I will recognize it and I will tighten my grip on the bull's horns and stare him directly in the eyes. Until then, I will continue to take this battle one step at a time and I won't be running to fast.
Saturday, November 17, 2007
Many of you saw that I have made a final decision on whether I will be doing the open biopsy or not. (For those that haven't seen this I have decided not to do the open biopsy.)
For my entire life, I have been against many different things when it comes to the practice of medicine. I don't agree with tests that are just done as routine and I am not afraid to go against what a doctor says and carve my own path into the practice. I am against some forms of treatment that are considered "routine" and there is no such thing as a minor surgery in my eyes. I believe those that undergo elective surgery are taking a risk not worth taking (nothing against those that do choose this path) and that type of thing is not for me no matter how much it will benefit me or make me feel better. Most importantly, unlike many people, I do not fear death. It is a natural part of the cycle of life and there is nothing to fear about it. I don't want to leave those I love behind, but at the same time this lack of fear allows me to face situations head on and with a clear head I wouldn't normally have.
Some of those that are closest to me, know all these things about me. They know how I feel about certain procedures and they know that quality of life is 1000 times more important to me than quantity. This is why they were so bamboozled that I could possibly like my third opinion doctor so much that I'd be considering this open biopsy. I'll admit, looking back, I have a pretty good understanding of why and it's all the wrong reasons but I'll get to that later. So it was no wonder that this completely uncharacteristic feeling would eventually push me to the brink and corner me into making a decision. I'll admit that it took the doctor answering a lot of my questions. Although exactly as I knew he would, it was the confirmation I needed to know that I was not ready for this and since there is no reason for this right now, I would not be doing it.
You see, the reason for the open biopsy is so that the DOCTORS know what is really going on in there. They can determine what the actual size and grade of my tumor is and therefore come up with the best plan to treat it. Notice I said that it is so the DOCTORS know. Here's the key point. I don't care what is up there. Whether it is a Grade One Glioma as we suspect or a Grade Two Glioma that needs to be radiated, I'm not going to do anything right now. If I am not having symptoms from this tumor, there will be no further action. Therefore, what is the point in knowing right this second what I am dealing with. I'm not going to do radiation or chemo or even have resection until I am having problems. So why go through this "biopsy" now? It's so the doctors know what is going on and so that those around me know just how bad it is. Not because I care what it is or care how bad it is but because others do. Do you see where the problem is now? Many people immediately pick up on how compassionate I am. Guess what, my compassion nearly led me to have a major surgery just to find out how serious the thing in my head is. Definitely time to back away.
My mind pushed itself into a corner and told me, "if you don't make a decision right now, then I'm going to cower into a little ball and I'm going to stay there until you take this into your hands." That's why I began looking at the whole picture instead of this tiny piece of hell I've lived in for 13 weeks. When you look at it technically, I have not found this thing. It doesn't exist. When you look at it from a quality of life aspect, it is not affecting my quality of life in any way. It is doing no harm to me. My quality of life is 110%. Because of this very thing, doing the open biopsy would essentially be an "elective surgery". Well, you all now know my feelings on elective surgery. The decision became easy when I thought of the elective surgery, the fact my quality of life would be lowered to a minimum of 50% for up to six weeks and possibly longer following the surgery, the fact my life will probably never return to 110% even after I do heal, and the fact that I am not doing this for my benefit but for the benefit of others.
I talked with John and he agreed that I am doing the right thing. In all honesty, his opinion is the only other opinion that matters because it affects he and I's life the most. (Yes it affects my son's as well but he will one day move on and have a family of his own... John won't, at least not with me if something happens.)
I've decided this ended up being longer than I intended and I still have a lot to say, so I will be stopping this one and there will be future entries with my game plan and maybe even a few other things. Until then.
Friday, November 16, 2007
Ok, I've decided that on Fridays I will give a bit of a week in review thing for you guys. I will basically give the run-down of my emotional, mental, physical state, preparation and review what happened in family, play, and other areas throughout the week. So here is the first Week in Review.
Overall this week has been productive.
Medically - I received a reply from my NeuroSurgeon, whom answered approximately 30 of my questions about the open biopsy and some other tests that I have been researching. The answers have prepared me for what may occur one day. I may go into details on this some day but it isn't for the here and now.
Which leads me to the emotional part of the week.
Emotionally - I felt good throughout the early part of the week and felt that I was finally getting over the hump. However, after talking with my doctor on Thursday and getting some things confirmed, I had a rough spell. I knew that I needed to make a decision on what to do and I needed to do it soon. Therefore, I thought hard and made the decision to not have the open biopsy unless there are problems that arise. John is on board with it so we will step away and enjoy our lives until God gives us the sign that we need to do more. I will post an entry later on this whole process with more details.
Mentally - I have been much clearer since making my decision and I am hoping that my productivity can kick back into normal.
Physically - Things are about the same. I'm still asymptomatic and the numbness on the right side of my face is at about 85% healed. (That or I'm just that much more used to it.) I had some lack of energy early in the week but that has been recovered since making my decision. I have also had some sinus pressure this week but my hayfever med is doing its trick and it's holding things down. It would probably be a first if I make it all the way to December without a full blown sinus infection.
Preparation - I have made some progress on preparing for the future and other possibilities as well. I have worked on "seizure proofing" my office at work so that the sharp edges are no longer a threat (just in case) and I sent an email to HR and my boss with pertinent medical information they may need. Furthermore, I have been working on my living will and I believe that I am almost ready to have it witnessed and to go over the details with those who will be in charge. I will go into more details on that process after I finish it all. Also this week, I obtained a copy of a software program that will assist me in writing John and I's will. This is something that I've planned on doing for a really long time and now it is finally moving forward. Again I will talk more about this after I get things figured out.
Family - On the family front, my cousin (she's actually a cousin once removed or something like that but cousin is easier to type) got through a double mastectomy without any major complications. Jazer is doing pretty good this week to my knowledge and I think he is finally settling down for the school year. I got him some books that he's started looking at that I think is helping him understand more about his ADD. We'll see if it continues to make a difference. John has been fighting some sinus issues but for the most part he is just his normal self. He and I have had a few breakthroughs this week in the medical front, however, we still need to make some progress on the "preparation" front. He is very uneasy about moving forward with these things even though he knows that it is something that needs to be done anyway, not just because of my diagnosis.
Play - This week was a bit on the busy side but wasn't overwhelming. We had a Family Reading Night at the school on Tuesday and Jazer loved seeing one of the teachers that had retired at the end of last year. He apparently has missed her more than we realized. We had a good time. On Thursday we were supposed to have dance but we found out that our caller was down with the flu. I hope he is feeling better soon. *Hugs* Saturday we have plans to attend a dinner for one of John's co-workers who is retiring and then go dancing. I am excited to get back out on the dance floor.
I think that about wraps up the week. Maybe next week will have more interesting things to read.
Thursday, November 15, 2007
It didn't take me long after talking with my third opinion doctor to decide he was the one that was going to make a difference in my course of treatment. I realized after we had only spoken for a short time, that I adored him, trusted him, and was ready to put my future in his hands. As the weeks since speaking with him has gone by, the more certain I feel he is the right choice.
Last week I called his office to ask them for an order for my EEG and MRI for December. I left a message and also told them I had some questions and would like them to call me on them. The next day I received a call from the head clinician and he left me his direct number. I called him back and told him what I needed from his office and that I had some questions typed out for the doctor. He gave me his email address so I could send them to him directly. He told me that the doctor would be out of the country until Wednesday but that'd he'd get back to me.
Well, last night I had a message on my voice mail. It wasn't from a nurse. It wasn't from an intern. It was from my doctor himself. I was nearly floored because I have only talked to a doctor on the phone once in my 28 years of life. Usually you get the nurse!!! Anyway, he gave me his direct number and asked me to call him back to discuss my questions.
I called him back this afternoon and he had told the receptionist that if I called, have him paged. Again it floored me to have a doctor care this much. I wish I could say that the conversation continued on that note but he confirmed so many of my suspicions, I am still not sure what road to take. However, that's not for this entry. In what I was hoping was going to help clear things up, I am now more confused than ever. The fact I do trust this doctor makes it even harder.
Wednesday, November 14, 2007
Hear me out here. I have had countless people say to me, "Amy, you amaze me in how you are handling this whole thing," or something like it. Believe it or not, this very thing has weighed as heavily on my mind as the fact I have a brain tumor. Am I really that different in how I am handling this? Am I handling this is such a way that I am setting myself up for a huge fall? These are questions I ask myself. Well, the opportunity finally arose today for me to ask my therapist his honest opinion on this.
And the answer is: I am handling it exactly as he would expect someone of my personality type to handle it. He didn't hesitate on the answer. He didn't think about the answer. He immediately gave me his unbiased thought on it.
Basically, every personality type handles this type of situation in its own way. My personality type takes the bull by the horns and faces it head on and makes sure that there is no avenue left unexplored in the process. He assured me that he would be worried if I was handling it any other way. It makes me feel better now that I know that, although I may be handling this differently than most of the people around me would, I am handling it as would be expected of someone like me.
I guess, in reality, I am still unusual in that most of those around me do not have my personality type but for those like me, I am normal. (Yes, it's a scary thought to think of me as normal.)
Monday, November 12, 2007
There is a song called: "Letter to Me" by Brad Paisley that I have now heard on the radio a few times. The first couple of times, I didn't listen real closely to the song but today I had the chance to listen to it in its entirety and the lyrics struck a chord with me. The song starts something like this:
If I could write a letter to me
And send it back in time to myself at 17
First I'd prove it's me by saying look under your bed
There's a Skoal can and a Playboy no one else would know you hid
And then I'd say I know it's tough
When you break up after seven months
And yeah I know you really liked her and it just don't seem fair
All I can say is pain like that is fast and it's rare.
Anyway, after listening to it carefully, I asked myself... what would you say in a letter to your 17 year old self?
I'm not a song writer so instead of sounding good in song, I am writing a real letter. I think my letter would go something like this:
I know that you believe in mystery so this will be one of many for you to keep, this letter is coming from you, 11 years from now. But you say that this can not be true, well let me prove it to you. Right now you are trying to make a choice between the easy way out and following your heart. Let me tell you that your heart is right.
You are about to journey into a few scary yet highly rewarding years. He really is the one. He will love you until the end of time. Your love will pull the two of you through the hard times to come. You will be scared. You will question whether you did the right thing. Let me tell you now that it is all worth it in the end.
Let me tell you now, to live for today. Enjoy every step, every breath, every sunrise, every sunset. There will be a tomorrow but why throw away today? If you live for tomorrow, you will miss your son take his first steps and you will let his childhood pass by much to quickly. If you live for tomorrow, you will forget how lucky you are to have a loving husband. If you live for tomorrow, you will find it hard not to regret. However, remember that everything that happens makes you who you are. And looking in the mirror at this strong woman before me, I would not regret anything.
I will tell you, as you struggle through the next few years, that it is simply a training program for the struggles to come. It is a test of your strength. It is a test of your character. It is a test of your love. You will survive it to face the next challenge head on. Do not hesitate to take the bull by the horns at each pass and rely on your strengths to make the decisions you know are right.
Talk to those much older and wiser than you. Tuck away all of their wisdom so you can refer to it when you are my age. Ask the tough questions, you might just be rewarded before it's too late.
Oh, and would you start that journal back up and keep it going? I know it's hard sometimes to think of something to write each day, but it's something you will cherish. I will see you some day when you are my age, looking in the mirror at your ever graying hair, wondering what tomorrow will bring and thinking about all the paths before you. The paths may not always be laid out in stone but thus far there has been a beautiful waterfall at the end.
I shall see you in 11 years.
Ok, so maybe this entry was a little on the strange side but I had fun writing it nonetheless. What would you say to your 17 year old self?
Sunday, November 11, 2007
Ok, I posted about how I had found a friend on MySpace. Well, I had actually found two friends on MySpace that I wanted to find again. They have both replied to me. It's kinda exciting to find those that you have thought about but been away from for so long. I think the last time I saw them was 10-11 years ago but they would frequently come to my mind. I had found one of them previously on MySpace but hadn't worked up the courage to message her. I guess if there is anything good that has come out of my diagnosis, it's that I no longer put things off to tomorrow when I can do something today. I'm so glad I did!!! It's really exciting to find out what those that meant a lot to you as a child are doing.
Anyway, I did say that I'm three for three. The third person I didn't find on MySpace but rather on my former school's website. She was a teacher I had that made a huge difference in my life. I emailed her to let her know how much she meant to me and to thank her for everything. She replied and she was happy I had done so. She really was a teacher that carried me through so many years. They say that most times there is a single teacher that can make a difference in a child's life. Well, she was that teacher for me so it meant a lot that I was able to find her and thank her. As it turns out, it's a good thing I did so now because she is planning on retiring after next school year.
Now I have one more friend from my early years that I hope to locate but I don't believe she's on MySpace. I will hopefully run into her folks again. I see them every now and then at the store. If not, I can always give them a call and see if they have any info for me. That's for another day though.
God works in mysterious but wonderful ways.
Saturday, November 10, 2007
The Internet is a wonderful tool for finding old friends and meeting new ones. I have been blessed over the years to have met tons of great people online. Some of them I have been blessed to meet in real life and we have become the best of friends. Others I speak with only online but we are able to share hardships, fun, and give each other support. I wouldn't trade my online friends for anything.
However, there is another way that the Internet can be used to stay in touch with friends. I am able to "speak" on a frequent basis to several of my friends from school, that it would be difficult to stay in touch with otherwise. This allows us to stay close even in our busy lives.
This week, I was able to utilize the Internet in yet another way. I was bored one evening and decided to see if there was anyone new from my high school on Myspace. Well, there wasn't anyone that I was interested in so I thought it would be interesting to see if there was anyone I recognized from my grade school on there. I was lucky enough to recognize a few and one in particular jumped out at me. It was my best friend. Her and I spent many days playing softball together, talking wrestling, and of course cheer on the Cubbies. Her and I eventually lost touch after I moved but our friendship never left my heart. When I saw her page, I was extremely excited and quickly sent her a message. It was definitely her and it is great swapping messages with her. :)
Do you have someone you'd love to touch base with again? You might be surprised and have that ability right at your fingertips.
Friday, November 9, 2007
Several days ago, I called my new neurosurgeon to ask him to send the order for my EEG and the next MRI, to my Family Physician so that we can push the two tests through my insurance. I also have a 3 page word document of questions for him on various things from some tests I stumbled across to the open biopsy itself.
Well, for most of the past two days, we've played phone tag. This will no longer be a problem. Yesterday afternoon the Clinical Tech left a message on my voice mail at home and the number was his direct number. So now, I can call him directly instead of going into a queue. This will make correspondence much easier. He said he would get the written order for the two tests and forward it on to my physician. I am guessing it will take a week for the insurance to ok it once they get it so with any luck I'll have the EEG by Thanksgiving. It will be nice to get the EEG out of the way and find out what my chances are of having seizures any time soon.
I told the tech that I had a list of questions that I'd like to know the best way of giving them to the doctor is. He was quick to say I could email it and gave me his email address. I prefer this method anyway because then I don't forget to ask anything and answers can be thought out and replies can be less hurried. Anyway, I sent them to him this morning before I went to lunch. He told me that my doctor will be out of the country until Wednesday but that he would expect some answers by the end of next week.
I'm very excited about this. I'm still in the stage of decision that the more information I have, the better able I'm be to choose the correct path. After some things I discovered yesterday, I'm at a deadlock on what to do. I really have no idea which way to go with this thing. However, after I get his reply, my decision should be a bit more clear. Especially after he answers my questions about the PET and MRS scans and whether they could assist enough to choose a burr hole biopsy instead of open.
You have to love being caught in the middle of your own mind. I guess the good part about that is that no matter which path you choose... you win.
I will likely take the weekend off unless I get a wild writing hair. I'm sure I'll have some new stuff for next week.
Thursday, November 8, 2007
Ok, so it's usually "Stop and Smell the Roses" but this isn't exactly the time of year to do that. So instead, I will send you a challenge and then tell you my story. I want you to take some time this week to stop and look at all the trees and their changing colors. I want you to watch the leaves fall to the ground and not dread having to rake them. I want you to watch as each little leaf makes its journey through the air to the ground. Finally, if you do have leaves to rake, I want you to rake them up into a pile and toss some into the air letting them fall onto you like you did as a child. So tell me, are you going to take my challenge? If you did, tell me about it.
Today I was waiting patiently for someone and I noticed the rapid speed at which the leaves were falling from the trees. I quickly became lost as I watched them. Some leaves fell quickly to the ground like lead weights but others floated through the air, gently fluttering as they fell to their destination.
After watching them for a good 10 minutes, I got out of my car and stood under the tree and laughed as the leaves fell down around me. Some would land in my hair, others would find their way to the top of my car, and one had the audacity to thunk me in the head. I'm still trying to figure out what hit me that hurt so much but luckily it didn't give me a bruise... yet.
It was so surreal standing there watching the leaves and it made me feel good about being alive. Even though I've been enjoying things like the full moon, a gentle spring rain, and the power of lightening all my life, I've never really stopped to watch the normal, subtle things in life. The leaves falling are just one of many of these.
Sometimes, in our busy lives, we need to remind ourselves of the small miracles of nature that occur around us all the time. I also realized, standing there under the catalpa tree, that even the small things in life have a lesson attached to them. The leaves looked so beautiful and free as they fell to the ground to return to the earth in which gave them life. There was no fear, no remorse, just beauty. I told myself, as I stood there in the slowly piling leaves, that I wish for my own end to be as beautiful and free. Most importantly, I know that if I continue to look at the positives in everything tossed my way, I will accomplish this goal when the time comes.
Remember, we all will have a time in which we will have to face death. Will you be able to face it with no regrets, no fear, and accept the beauty of eternity?
Wednesday, November 7, 2007
LOL Ok, I'm sorry but I have a feeling I could begin a lot of posts that way. As of today, November 7, 2007, I am not going to be having the open biopsy. (I warned you all that my feelings on it would likely change a million times between now and the time I actually agree.)
So the question running through all of your minds is: Why did you change your mind?
There's actually two major reasons for this change of feelings. Both are different yet meaningful.
1. I feel there may be more tests that can be performed before we take this "drastic" step.
I've been doing my research and I discovered two tests that, have not been mentioned in any way, but seem to possibly be something I should look into.
One test is a PET scan. My understanding is that this test has the ability to show the consistency of the tumor. This does not necessarily tell us the grade, but it would tell me if my tumor is likely all the same grade or not. If it all shows as the same grade, we could get by with simply a burr hole biopsy instead of the open. To me, this would be a much better process.
The second test is a functional MRI. Again, my understanding is that it is good at distinguishing between edema (swelling) and tumor. This would essentially answer our question of whether this thing is the size of a grape or half an orange. Again, it's a test that could probably be beneficial without going in there.
Therefore, I want to talk with my neurosurgeon about these tests prior to changing my mind back to doing the open biopsy. If I can safely determine consistency and size, I would much prefer the burr hole biopsy to the open.
2. Even though physically I am right handed, I have always been right brained when it comes to creativity and other traits thought of with a right brained person. Recently, I have seen no fewer than four tests that are supposed to judge which brain is your primary side. Well, interestingly enough, all four tests showed me as either divided or right brained. This concerns me that perhaps my tumor isn't in the "quiet" area that they believe. This brings me back to my original feelings of: "If it ain't broke, why fix it." (Yes I know ain't isn't a word!!!)
So now you know why today my mind has changed. I'm sure it will continue to change as we move along. I guess the other thing that has constantly been lurking in the back of my mind is why I am actually thinking of doing it anyway. Everyone that knows me has been shocked by me even contemplating it. The only thing both John and I can figure is that my caring for others is pushing me that way. If that's the case, do I really want to do this?
Ok, enough. I'm going to lunch.
Monday, November 5, 2007
This has not been a very positive day in the slightest and to top it off, it's all on the day that I decided to try to get back into the swing of things and try to lose these extra pounds I've put on since we haven't been eating correctly. Of course, stress = eating things you shouldn't.
My son woke up this morning and threw up before he even got to breakfast. I drew the straw to stay home with him since I can work from home. I started working early this morning and had a 10 AM meeting so we really couldn't do anything until after that. Just before my meeting, John calls with news I was not happy with and it immediately put me in a poor mood. Some days I think he does it without realizing its affect on me, other times I feel he does it on purpose. He knows what pushes my buttons so why does he continue to bring it up. Especially right now when emotionally I'm am on the edge of the ledge. *sigh* Luckily, he agreed to drop the thing and tell his boss no for now. So this issue is now mute but it still irked me off all day and all the things I planned on doing became null.
Anyway, by the time my meeting was over and I planned on taking my son to the doctor, he was sound asleep. I didn't have the heart to wake him so I snoozed as well. We didn't wake up until two hours later. I guess we both needed it.
Finally, we had a really healthy supper of PB&J sandwiches and that was sooooo not on my eating plan but... you can't win them all.
Unfortunately, I'm caught up in about six things right now so I'm going to wrap this up for now. Today was one of those days that made me think that I'm not up for the surgery in June. For one, these guys aren't ready to have to take care of me for a few weeks and two, I'm not sure I have the emotional stability for it right now. I told you I'd change my mind a million times between now and then. Well Huggles.
Saturday, November 3, 2007
Well, John and I have both worked hard on the house both inside and out today. Needless to say, the last ten weeks of chaos has taken its toll on more than just our minds. The house looked like a tornado ran through it. I worked inside most of the day and we can now walk through the kitchen, great room, and our bedroom. John worked outside on some projects that were delayed by harvest and my diagnosis. With any luck by the end of November our shed will be officially updated and tied down. (long story)
We also were able to catch up all the dishes and the laundry is about 80% done now. That's huge because we were getting desperate for clothes!!! I still have a bit to do on the house tomorrow so that it's back to what it was pre-diagnosis. Then I can focus on the things I need to work on before I'll consider surgery. I have a nice little list started so hopefully I can start checking them off soon.
Tomorrow we have a 4H meeting and we have to go to town to supper at Grandma's and the hardware store. I hate days we actually have things away from home to do but at least we had the day home today. We did get a lot done despite sleeping in until 9 and I took an hour nap on John's lap early afternoon. :)
Ok, enough of my boring life.
Friday, November 2, 2007
While discussing my tumor with my new neurosurgeon, the topic of seizures came up seriously for the very first time since I was diagnosed. First off, he wants me to have an EEG. It's a pretty simple brain wave test that will tell us if I am having seizures and not really aware of it. I'm actually pretty interested in this test because I'm curious if it is possible I'm having some signs I'm not aware of. Beyond that, he reminded me that after surgery seizures are possible and honestly right now I am a high risk for them because of my tumor and its location. His advice to me was to educate myself AND those around me so that if I should have a seizure it doesn't take anyone by surprise.
Well, here's the information I have and passed onto those that I work closely with at my job. I figure the chances are if I have one, it will be there so they need to be aware.
First off there are over 60 different types of seizures but they can essentially be divided into two main categories: Grand Mal and Petit Mal.
A Grand Mal seizure is the type of seizure that usually pops into someone's mind first when they think of a seizure. The body stiffens, they lose consciousness, fall to the ground, have convulsions that are usually violent... If you should see someone with a Grand Mal... DO NOT TRY TO STOP IT!!! Instead you should make sure there is nothing near by they can hurt themselves or someone else with, make sure they are away from danger like stairs, step back, and let them have it. You do not want to put anything in their mouth. You do not want to try to stop the seizure because you will only cause harm to them or yourself. You do want to step back in case they get violent so they don't hurt you.
If they are conscious when it is over, don't allow them to get up to quickly and rather make sure they are ok before letting them leave the ground. If they are unconscious, roll them to their side so it is easier for them to breathe. If this is not common for them, call 911
The second type is the Petit Mal seizure. These types of seizures are typically minor and often go unnoticed by the person experiencing it. Some of the things that would be common in my case would be a sudden spacing in the middle of a conversation that lasts 1-90 seconds and then the conversation is completed as if nothing ever happened. Garbled words, distant stares, twitching, and odd sudden change in behavior are also possible seizures. Since the person this happens to doesn't always realize anything happened, it is important that when you are sure they are back to themselves you notify them of what happened. This will allow them to make the decision that they need to on what to do next.
So there is a quick and dirty explanation of seizures and what I have learned about dealing with them. Since I currently am not having them (to my knowledge), I really can't give much information beyond that and know that I am accurate. I realize that most of those that read this don't see me on a daily basis but now you know what to do should you witness anyone having a seizure.
Thursday, November 1, 2007
Ok, so that probably doesn't make a lot of sense and no they are not related. LOL
Today I spoke with my family physician and updated him on what is going on and what my current thoughts and plans are. He felt I was doing all of the right things. I also asked him to be the liaison between my local and remote team. Since I am considering treatment at a facility that is 3.5 hours away, it isn't feasible for me to have all of my MRIs, scans, etc up there. Because of this I need a few members of my team here locally. He agreed to be my liaison down here so now my team is mostly in control. He also agreed that the neurologist I picked out for down here would be fabulous. Therefore, it looks like I'm set to go with whatever road this tumor takes me. Now all I have to do is let my local neurosurgeon know that I have found another doctor to take over my care. I don't handle confrontations of this type well so it will be a character building moment. (Yes this is a huge character flaw of mine and my husband will be the first to acknowledge it!!!)
Second thing on the agenda, after a few hour nap, is square dancing this evening. It's been a few weeks since we went dancing so it should be fun to get back into the swing of things. (no pun intended) I really love square dancing and we need to start doing it more often if I am to meet my goal of shedding a few pounds. I figure that I no longer have the excuse that I don't want to lose a ton of weight only to gain it all back with pregnancy. Besides, now I have an incentive since the less weight I have, the easier my recovery will be when I choose to do the open biopsy.
Speaking of open biopsy. Yes, I have decided I will do it but the big question mark is when. Unless something shows up in an MRI, the soonest it will be is next June. Even then, I reserve the right until the day of surgery to change my mind so... don't count on it!!!
Alright, that's it for now. I have been quietly working on some legal documents that are of concern for the future but I will fill you all in on that as I finish each document. I'm hoping maybe my entries on it will convince some of you to work on your own important paperwork.