The good, the bad, the ugly...

Well I have gotten a lot of feedback from everyone that I am so positive that there is no way I always feel like that. The whole truth is that 98% of the time I feel truly optimistic and grateful that we are able to deal with this newly discovered tumor. Seriously I do not say things that I do not mean, that's just not me! If I choose to say it then I entirely mean it! That being said last night was horrible. The most frustrating part is that yesterday I felt great, maybe looking back I over did it. But seriously it is hard to feel kinda ok and just sit on your rump. I SOOOOOO miss the gym, I so miss driving, I so miss going to my kids school... ok this could go on forever, I miss everything. So yesterday when I had a lil energy I cleaned, vacuumed, and even made a meal which made me nervous (just in the event that I do have a seizure and am holding something hot or glass in my hand? oh well) All of these very mundane motherly tasks I SOOOO enjoyed, you know just a bit of purpose is always good. Then Bryson and I laughed our way through the night while enjoying our favorite tv comedies! Then as soon as we jumped in bed I started to feel weird. At first I simply could not go to sleep, then I started to feel numbness and tingling in in my right cheek just below my eye! Then the blurred vision came to my right eye, and before I knew it I was up ALL NIGHT (lame!) This morning we checked with the dr and he again increased my anti seizure meds (keppra.) The funny thing is I have had this before about 2 years ago I was diagnosed with a sinus infection for the exact same thing? Pretty sure it was a sign of my tumor but it's impossible to tell when you have had previous CT Scans and MRI's and they saw/found nothing. And you struggle with migraine headaches which do give blurred vision? So the short story is that there were probably some early signs of a tumor? But I am grateful for where I am at now! The good news is that the steroid that I am on to help with the swelling on my brain is helping and my headaches are all but gone! AWESOME!

I have to thank everyone for their love and support! I know I keep saying it but I am in good hands. It has been amazing how in the last week many many many people have shared with me their personal stories of brain surgery with Dr. Randy Jensen. Or even just how they have worked with him! Seriously people I have not seen or talked to in 10 plus years. It is so comforting to have so many people aware of me and my situation!

Countless people have helped us in so many ways and we are SO GRATEFUL! I have learned through this whole experience not to ever ignore a thought or impression to go and help someone. I have had people call or arrive at the perfect moment and I know it was meant to be. I know that personally I have ignored some of my impressions/inspirations because I did not want to bother that particular person in need. But I am here to testify that they are on purpose and that they do make a difference, even if you just stop by to visit. Just feeling loved and cared for is a huge gift and blessing!

The goal for tonight is to SLEEP! wish me luck :)

Taylor Swift

Yesterday was most definitely the highlight of my month. I know considering my month that sounds super lame... It was my mom's bday and as a gift we all got to go to Taylor Swift. If you know my girls then you know that they LOVE swifty. We were front row just left of the stage so we saw everything happening backstage. Examples: the band coming out before they came out, the dancers, the dancers changing.............. it was the greatest! I could not imagine going to anything more exhilarating with my girls. We were about 7 Feet from Taylor at one time and were often next to the singers, dancers, and guitar players (yep I got a guitar pick, then gave one away to a girl who can't catch, turns out I can even catch w a brain tumor ha!) We ran into Skyler's best friend and took pics which one of them ended up on the big screen! Also I never had any thoughts of this silly tumor for a full night I felt like myself (miracle!) Unfortunately Bryson did not get to sit by us, poor boy he was on the floor! He touched Taylor (no worries I'm not jealous) and at one point when she was chatting away she said something kinda like "Uh hey dude!" specifically to Bryson. My girls thought it was their birthday and even said "this is so much better then Christmas!" I CAN NOT WAIT TO GO BACK!!!

could it be another good doctors appointment?

This morning Bryson and I met with Dr. Randy Jensen at The Huntsman Cancer Institute. We have been awaiting this appointment for some time. When we got there we were escorted by some nice gentleman just trying to help us out. That place is quite beautiful and spectacular SERIOUSLY. When we arrived at the drs office we were immediately escorted into a room, I then did all the standards weight height allergies... When Dr. Jensen came in he quickly scrolled through my paper work then said "You are the one I have been getting all the phone calls about!" Dr. Jensen is great. I am so pleased with our appointment. He was thorough, he worked through the MRI's with us and pointed out areas of speech activity in relation to my tumor. Everything he said is the same as what we have heard, probably a low grade benign tumor located close to the outside of my brain and should be removed. He did say that I am his worst case scenario patient. I'm healthy and have everything going for me, so the goal is not to screw anything up. Which we all ready knew. Dr. Jensen sat with us and talked out the whole process. He described the entire surgery process and how exactly they get to the tumor. He also helped adjust my medications, he thinks I have some swelling on the brain due to the tumor, which may have caused the seizure. And that I am continuing to have small seizures, I think so too. He also thinks that reducing the swelling will reduce my headaches? He sat with us for over an hour (when was the last time you had a dr do that?) He answered every question openly. And I really felt at peace as soon as he opened his mouth. Here is the short story. I have a surgery date October 7th at 7:30 am, he could have done it earlier but he will be out of town this week. He estimates the surgery will take around 5 1/2 hours. I should be in the hospital for 2-3 days just until I feel like myself and recover from anesthesia. Then I will be quite fatigued when I return home but will be able to fix a sandwich and walk to the mailbox. All of this is good news to me! My case will go to tumor Board tomorrow as Dr. Jensen is the head of Tumor Board and that is just how he does things. I will have an MRI Thursday night before surgery. I feel like I am in good hands. So now we have to just pray for the greatest outcome possible and leave it in the Lords hands. Again I am sure I sound like a broken record but thank you so much for the love, support, prayers, food, calls, texts, messages..... I am so grateful for it all. I wish everyone knew how truly loved they are!

Taylor's Cardiologist Appointment

This morning Taylor had her 3 month follow up cardiology appointment. We opted to take her to the new Riverton IHC Primary Children's Out Patient Clinic. If you need to go to Primary's and you have the possibility of going to Riverton then DO IT! It is the best, it seriously saved us 1-2 hours of waiting! It was a very simple visit. Height, weight, EKG, then meeting Dr. Puchelski (Taylor's AMAZING doctor!) He took a short listen to her heart. Asked if she noticed a difference from the surgery. Which she said that she had, and I added that her exact words are "I've never felt so alive!" Dr.P said that she sounds great, he asked about soccer and was happy that she was the fastest on the team. He then told us a magical sentence... "We will see you in a year!" Those are the golden words, as good as it gets! Then Bryson and I asked about future Echo cardiograms, he said "She will not need one for years." And in regards to MRI's, he said "Uh I don't know maybe 10 years!" SERIOUSLY it was such a great visit, so full of peace and happiness. I am so grateful that she gets to feel at peace, be a normal kid, and not have to worry about her heart. Oh Taylor how dearly and deeply I love you. You are such an example of strength, positivity, and joy! Thank you for bringing endless happiness to our family!

the biggest thank you i've got!

thank you so much...

thank you for your love, support, prayers, and fasting!

i know they are and will make a difference!

i feel so blessed and so loved!

i truly am at peace and am ready for whatever road lies ahead!

i wish i had the words to express my appreciation but simply put

THANK YOU!

Here is my current status...After a lil bit of a frustrating Thursday things are starting to move right along. I am going in to Huntsman to meet with Dr. Johnson on Tuesday. I have to keep all day open and available because they are just going to fit me in :) My doctor, Dr. Pingree went up and met with Dr. Johnson on Friday to talk about me. Dr. Johnson is the only one who does the awake surgeries in the state (there are very few dr's who do them in the country!) So I am excited to have at least the chance to meet him and to discuss further plans. I have been warned that my surgery is extremely rare ( I know I have said this over and over) but it is going to take a very specific team assembled for my surgery. There is only one anesthesiologist team that will be putting me to sleep then pulling me out of it. There is a therapist who will be talking with me and having me answer questions. There will be a number of neurosurgeons there... so it is complicated and they continue to reassure me that they are doing everything they can. And of course I want it done right.

As long as I get a normal nights sleep I feel good. But if muscle twitches keep me up then I only sleep 1-3 hours and then a massive migraine comes on that lortab can't touch then I feel like garbage. But I am excited to be getting back to normal and to feel like I can in some small ways contribute to my family.

Also Taylor has a follow up appointment with her Cardiologist Dr. Puchelski at Primary's Monday morning. I think it is a very basic appointment. She is doing great and averaging a couple of goals every soccer game, we have no concerns or worries!

Thank you to everyone for the blog comments, emails, texts, visits, meals... They do mean a lot and are so helpful. I could not imagine going through a situation like this and feeling like I was all alone. I KNOW I AM NOT! This thing makes me just want to go to the hospital and befriend all those people who are alone :) seriously.

I feel completely at peace. I will get through this and as soon as I do I may live my life a little differently. I am no longer afraid of anything, what is the worst thing that could happen? Seriously!

an update full of very little new news...

This morning we called Dr. Pingree's office. The receptionist had no news of the tumor board reviewing my case. But said that she would have Dr. Pingree call us as soon as he was out of operation. We waited until about 10:30 when the receptionist called us back. She told us that my Dr. had no knowledge of my Functional MRI being done?... I believed him but am bothered, at that point Bryson was also bothered (bothered is a nice word for how we really felt.)  Bryson then worked out a plan to pick up the MRI results from the University Hospital and deliver them to my dr. Otherwise it would take my dr's office days to receive them. When we dropped them off we were able to meet with my dr. He apologized for the confusion and basically blamed it on the large university program. He then told us that as soon as he heard I had the functional MRI he called the radiologist, who essentially agreed with everything he had seen in the first MRI. It appears the tumor is low grade, probably benign, slow growing. There is a possibility that it is not a tumor at all and could have been a congenital brain defect that I was born with. But they can not be sure unless they biopsy it and look at it, which takes around 2 days for the stain to fully sink in and for them to be sure of what it is. The tumor is around or near the speech center of my brain. They will not be 100% sure of location until surgery. It is not near the movement part, so no matter what I will be able to move my body and face (good news).

The current plan is... Dr.Pingree is going to call Dr. Johnson at the U (he is the only dr who does the awake surgeries, and don't worry there will be a full team there.) They will discuss if they still want to present my case to the tumor board or if a biopsy is best. If they do a biopsy then they will know exactly what the tumor is and how aggressive they need to remove it. They want to save my speech. I want to save my speech, so I am being as patient as needed. My dr explained it like this: I will still be able to think of the words and sentences but they will not process in my brain properly and will not come out the way i want. I will hear them and will know the words are not right and I will be super frustrated. I also may not be able to write them properly. His example was... I would want to say :"The pen is green." and I would end up saying "The apple is red" yep that would be frustrating. So we should know more possibly tomorrow. But we are again waiting and I beg all of you to be patient with me. There is no use if they drill into my skull and screw everything up.

Here are a few more good things. I no longer need to be baby sat/left alone, it is a good sign that I have not had a full fledged seizure since last Monday. I am having small muscle twitches, but the dr in unsure if they are small seizures or side effects of my medication. That being said I'm not sure Bryson is comfortable leaving me :) Also I asked him about my hair loss, he said he is a hair preserver and that infection has little to due with hair removal. Now he probably will not be my head surgeon but if it was him he would need to make a big question mark cut from the top of my forehead to my ear. He would then only shave around the ? incision. So will see, seriously I could care less and would just make my hair a fun crazy style and rock it! Also we asked him about how long until I could possibly drive. He GUESSED that after 1 month of recovery I could maybe drive. that sounds good to me :)

K I promise to update our blog when I have updates. LOVE YOU ALL, THANK YOU FOR ALL THE LOVE!

Functional MRI

I just barely got home from my Functional MRI. It was up at the University Research Park. I have a funny feeling I am going to get real used to that place. Basically a functional MRI is when they ask you to do or think specific things so they can more clearly understand exactly where the tumor is located. And by exactly I mean exactly. They want to have as much info before they go in as possible.

During the MRI I did things like think of as many words as I could that started with a specific letter then stop when they asked me to rest. I never spoke, the MRI machine only needs thoughts (interesting huh?) Then read a sentence and finish the last word (example: Put the dirty dishes in the ___________. ) The sentences cruised through and I just had to read them quickly then fill in the gaps with my thoughts. I also had to shut my eyes and let my mind wander for 10 minutes! That was brutal! And I had to squeeze my right hand on demand. I told the Dr. I wouldn't tell anyone (but no one reads this blog :) right?) during the MRI the screen that gave me the reading commands came crashing down, it was a lil scary. But I told him if he hurried up and worked through my functional scans that I wouldn't tell anyone ha ha.

So apparently the basic MRI scans are ready to be presented to The Huntsman Round Table Group, but the functional scans can take days to review and edit? So I tried to get the Dr. to finish ASAP because my mind might blow up not because of this tumor but because of waiting, I swear if it's one more week before Huntsman reviews it I might not be able to make it. He assured me he would do it as quickly as possible... ie the screen falling down! On a positive note they told me that I was one of the quickest functional MRI's to ever take place from the time of scheduling. Apparently it could take weeks to get in? He was extremely discreet about the info he could give me but did let me decide if I wanted to see the MRI. I got to see the tumor... which was in it's own way kinda cool? And so strange to think that I was looking at my own brain, it looked bigger then I expected and I asked him to measure how far in my brain it is. The rough measurement is 1.2 centimeters. Surprisingly far in, but he also did not want me using that as fact. So let's just say it's in there :)

Now we wait. I am so looking forward to having a surgery date and moving forward and on. I will face whatever I have to face, but waiting is killing me. Hopefully I will hear from my Dr. late Wednesday night or Thursday morning.

a moment i will never forget

Skyler's Baptism

Skyler was baptized

it was such an

amazing

wonderful

special

day!

A beautiful life

Do you remember the movie A Beautiful Life? Well it has been bouncing back and forth in my mind today. I remember going to see it on a date when I was in high school. I had no idea what type of movie it was and knew nothing about it. As it began I was like "Uh we are seriously watching a movie with captions?" To say the least I was not prepared for what was to come. The lead actor simply took the audience onto a train of inner thoughts, happiness, and beauty. HE WAS HE HAPPY. He helped others who were around him to be happy. When his son entered the Nazi concentration camp he continued to see life as a beautiful place. Straight up I realize my life is NOTHING like that, and please know I am not comparing. But I can not help but compare my mind to his. It has been such a powerful tool. I truly wish that every single person could experience the love I have felt without going through any struggles. I have felt the love, kindness, prayers, compassion, positivity, service and the plain old happiness of the world. I am here to tell you that it is such a GORGEOUS place encompassed in JOY! In five days I have learned a lot about myself and I can honestly say I am proud of the person that I am. And I'm sure I am going to grow so much from this little trial. It's funny because I have always prided myself of being the toughest girl I know :) But sometimes strength is shown is different ways, so for now I am going to focus on growing and becoming more refined. If there is one thing that "something scary" can do it is put life into true perspective. Only the big things matter and it's up to us to discern the big things.

My family and my friends are my world. And somehow it seems like people either show up at the perfect moment or send me the perfect message. Honestly feel free to just stop by. I have had so many requests and I can not respond to them all. But you are welcome and I would love to see old friends :) Also for all you cyclists please come and pick bryson up for a ride. we are going to need moments of normalcy to get through this and I have countless friends who can come and hang while Bryson gets a break :)

As for me I want to not only be positive but truthful so... I have great times where you would hopefully know nothing was wrong. I also have times where my headaches are so severe I can not even get out of bed or fall asleep. My migraines come on like lightening and have no warning. My muscle twitches are also making sleeping nearly impossible. I do have to think quite hard to sound normal and smart.  Last night Bryson and I went out on a date and it was AMAZING, for a brief time I felt like Summer and it was such a blessing. Unfortunately around 2 am everything turned and i felt like my head was going to explode. I am looking forward to having my case go to Huntsman and finally have some type of surgery schedule.

no news is no big deal? right?

So one of the things my neurologist pounded into my head was to be patient. He kept focusing on the fact that this tumor is in a very rare location (the speech center of the brain) and that it is going to be a very complicated process even figuring out the right procedures for removal. So I have absolutely no news. My Dr did not present my case the the Huntsman Cancer Board Wednesday and has decided that he would like the results of a functional MRI to present. Thus I have an MRI scheduled on Monday afternoon where during the MRI I will talk, read, move, answer questions... Then my Dr will present my case to Huntsman. So Our best guess is that my surgery is anywhere from 1 to 2 weeks away. They are much more concerned with doing it right then doing it quickly. So Bryson and I are both doing our best to stay positive, calm, and patient :)

Just a lil status update. To my knowledge I do not think I have had another seizure. But I feel so strange it is unexplainable. I have had extreme muscle twitching which can even move a limb. My sense of balance is out of whack and is making walking difficult. The guess is that the medications may be causing this. I am also having to think 3 times as hard to sound smart (ha ha) and kinda have moments of blank thoughts. And it turns out that a seizure is harder on your body then any soccer game ever could be! Surprising I know!

I have to take a minute to thank the cutest guy I know. Bryson has taken on every single responsibility around here. He is amazing. I knew when I married him that he was my perfect match, and now after nearly 11 years of marriage I love him more then I ever knew I could. He is my world and has stood by my side through the good and the kinda ugly :) I am not allowed to be alone due to possible seizures so we are together, and it is so comforting to know he is here! Babe you are the greatest hubby in the world! LOVE YOU!

Also thank you to everyone for all the love, support and prayers! I wish people could feel this cared for without going through such a struggle! I know they are making a difference and I feel so blessed to be so cared for. I can honestly say I have cried more out of feeling loved then feeling sorry for myself. THANK YOU SO MUCH! LOVE YOU ALL! I so wish I could thank each one of you individually but I know I would leave someone out.

Sometimes life gives you lemons.... I am for sure making lemonade or even how about a lemon chiffon custard :)

I wanted to give a quick update of everything that happened to me and my family on Monday. I actually have been feeling quite bad for a week. I've had a severe headache and was concerned but just hoped it would go away. On Monday night I had loaded the kids in the car for soccer and was trying to put the keys into the ignition when I began seizing. I remember very small tidbits... shaking in the front seat, my brother Konnor at the door, and then the paramedics. So in a time span of 10 minutes i remember less then 3 seconds. But this is not normal for a seizure, normally you remember nothing and no not come out of it for 10 minutes and on.

I have to look back at the whole situation as a COMPLETE MIRACLE. Seriously what if I had been driving with all of my kids? My siblings Starr, Sharwan and Konnor had been staying at my house and all were home. I KNOW IT WAS BY DIVINE APPOINTMENT! I know that the Lords hand was in everything and helped everyone to be safe in the situation. I will be forever mindful of the Lords hand and of his love and concern for my family!

While I was seizing Taylor sent Skyler into the house to get help. Skyler ran into get help and yelled to Konnor "Something is happening to Mom!" They ran outside and Konnor ran to the car door then sent Sky to get Starr. Sharwan came out to the car followed by Starr.I was convulsing in the drivers seat. Starr and Konnor pulled me out and carried me to the back of the car, I began foaming at the mouth. Sharwan then called 911 and they realized the ambulance was coming so they did not need to drive me to the emergency room. They then layed me onto the grass. Then Konnor and Skyler ran to the neighbors to get help. When they got back my convulsing had stopped and I had passed out. I stayed passed out for about 1 to 1 1/2 minutes. When I woke up I was still very out of it and had extremely slurred speech. I demanded I get the kids to soccer and soccer pictures I fought Starr and pushed and started to stand up. Then Konnor grabbed me and made sure I could not stand up. From this point it took roughly 3 to 4 minutes until the paramedics arrived. At this time we had a lot of neighbors here to help. I remember talking to the woman paramedic who was giving me a choice to ride in the ambulance or get a ride from my family? How bizarre is that???????????????????????????????????????????????????????????????????????????????????????????  I must of sounded ok but I definitely was not all there. At that exact time Bryson had the impression to call . He was on a work trip in Minnesota and I was scheduled to go out for my first time on Thursday :( Sharwan returned Bryson's call and Bryson was able to take charge of the situation and tell them to take me directly to St. Marks. They decided on st. marks because of the cat scan/ mri/ and the specialists and the fact that it is closer the the University Hospital.

As I drove all the way to St. Marks I was all there and the paramedic talked tome all about seizures and explained tidbits of why my seizure was not "normal". I remembered small mili-seconds of it and I came out of it and started communicating. This was also the reason they wanted to "look for something else". Sweet Starr followed in her car and I could see her the whole drive.

I had tremendous treatment and care while in the ER. They took blood and did a CT scan and saw a mass so they then did an MRI. I knew something was up when the MRI tech asked me a million questions about what happened, so i was slightly prepared for some type of news. My father in law Tom and my parents quickly came and entertained me :) When the results of of the MRI came in my er Dr came in and turned off the TV and backed up to the wall, clearly she had news and it was not that good. she very simply said she had seen a mass probably a tumor in my brain and that she would let the Neurologist come in and explain further. We waited about 30 minutes for the neurologist and it was clear he was not on duty when he came in. He explaining out of all the tumors to have this was a very good one. It does not appear to be cancerous and is the size of a quarter or smaller. I may have had this for years or longer? They will not know for sure of if it is cancerous until it is removed. It is in the left side of my brain about 2 inches above my ear. This is in the speech center of my brain, which is the bummer. So they need to do a lot more tests to verify it is in the speech center and if they are correct (which I am sure it is because words are not coming out that easily) the operation will be will me awake so I can communicate as they touch different parts of the brain and they nay not be able to remove the entire tumor? To me that is the only scary part :) Today my neurologist is presenting my case to the Huntsman Tumor Board and he is assuming they will agree with him (he was at Huntsman for 10 years) and have my operation at Huntsman Cancer Institute. He is going to need to research and as he said "get all his ducks in a row" for my surgery. This is quite rare and his estimate is I will have surgery in 2-3 weeks. He has asked me to be patient, which I will try to be.

There was actually 2 earlier little seizure episodes but they only occurred verbally. Roughly 4 months ago I said a prayer and the correct words simply could not come out of my mouth, once I said amen I made sense again. But I was scared by it and joked that I had had a brain aneurysm and after Taylor's surgery I said something to bryson that did not make sense but knew it did not make sense and would not repeat it. The Dr guesses that this was a seizure but only in my brain. The one good thing is that I now know I was not loosing my mind haha!

I was only in the hospital for 1 day. And since I am on anti seizure medicine I have not had any physical seizures. But I am still having them in my brain. Which means a loss of words or absent of thoughts or even kinda zoning out for a few seconds. It is super strange to not feel like myself and even a little frightening. I feel quite horrible. My body is thrashed, worst then any sporting event. My muscles and joints kill and are super soar. I am able to walk am supposed to get my body back but I can not be left alone. I am not allowed to drive obviously. And I can not lift anything heavy/myles :(

Another true miracle occurred while I was at the hospital. A dear long time friend of ours is a Dr at st marks Greg Anderson he stopped in to visit me and then pulled my parents into the hall. President Thomas S. Monson (the prophet of the LDS church) was scheduled to visit him in another location earlier that day but had to cancel and was going to try and stop by st marks later. Greg had told President Monson about me and we hoped I would get to see him. I was released and President Monson was visiting Dr Greg so I waited in Greg's private office with my parents and every sibling but Season (we miss you but know you were there in spirit). President Monson came in shook each of our hands and then sat next to me. He talked and told lots of funny stories. He thought my name was humerous and kept joking "Where is winter?" He then rubbed my hand for ten minutes as he talked. After 25-30 minutes he gave me a blessing. I will remember the spirit I felt for the rest of my life. He left my healing in god's hands but said he would be on my left side and my right side. He then said that he was sent there specifically for me. Once the blessing was over he said I was pretty, then said I should not say that but I'm an old Navy boy :) and he kissed my hand. I WILL NEVER EVER FORGET THE LORDS TENDER MERCIES AND THAT HE KNOWS ME AND IS AWARE OF ME!

My kids have been amazing truly inspirations. I'm sure we will all go through our own moments but they are strong and we are going to be positive through everything. Bryson is such a great pillar of strength I am so blessed to have him! He hoped on a flight home from Minnesota as soon as he could to get home to be with me. And now for the first time ever he gets to totally take care of me :) he is ready to be hot nurse! I am choosing to only have positive thoughts and words. I will be just fine. I WILL MAKE IT THROUGH THIS and be back to the same old summer soon. I know I have been blessed, guided and even supported by Heavenly Father every step of the way. He has been on my right hand and on my left! And I am so grateful for his love and support!

I have to thank everyone for all the help love and support. there is truly no way I would name names. My family has taken over. I have received endless texts, emails, phone calls, visits of love and support. And they have meant the world to me.

I am a strong girl with endless faith and I am positive that I will make it through this. Maybe I'm just being turned into a diamond and that is going to take some serious work :)