Once upon a time I got really bored. So bored in fact that I probably lay in my bed on top of a heating pad and underneath 3 blankets, and I sit watching facebook and click refresh refresh refresh... hoping something will change. Nothing does. (Well, of course it changes, but not as often as I would like.) So, I rot in my room and eat candy and eat soda and it's getting ridiculous. And even doing that, I have lost a lot of weight and pretty much need to get back in shape. Why? Well, when you go through chemotherapy, the better shape you are in, the better you react to the chemotherapy. And at this rate I am going to throw my face up and feel like death because I am so out of shape. And how have I changed?... Well, instead of watching facebook or tv shows all day, I actually do real things.
Each day I pick a topic in the topical guide in The Bible and I study that topic until I have gone through all the scriptures listed, and I read accompanying talks and I study the topic until I understand what it means and how I can apply it in my life. After I find a way to apply it, I spend time thinking about how best to apply it, and I make to-do lists, and I check them off. I make it happen.
Afterwards, I spend time reading, studying, and marking two conference talks that are in the recent Ensign. I find myself discovering all kinds of insights and inspiration that are in these talks. I know they are inspired words from leaders of the Church of Jesus Christ of Latter-Day Saints and they guide me in my life and help strengthen me in areas of my life that I struggle with.
I also spend time on my knees in prayer. The time I spend talking with my Father in Heaven is some of my most treasured time. I wouldn't trade that time for anything. I am so grateful for the times I am able to spend talking with God, and for the help and strength he is able to give me.
Starting this week- I am going to start exercising and getting more in shape. In addition to that, I have registered for an Independent Study Class from BYU, a Doctrine and Covenants class, and started that tonight. I am determined to work hard and do the best I can. I would really like to get an A in the class, and personally, I am SO dang excited to be back in school. With all my friends freaking out about finals, it actually makes me miss taking classes! Therefore, today I registered and spent a couple hours studying D&C and taking notes. I am so psyched to take this class!!
Besides my lifestyle change... I have some medical news for you. First of all, I have a stinking cold. I hate it. I go through a roll of toilet paper for my poor stuffy nose a day. It's ridiculous. Secondly, I have SPLITTING headaches again. The kind that set me off about my brain tumor in the first place. Same location, same pain. But this time, it's a little more sever, and it is a lot more recurring. I took pain medicines, like the one's they gave me in the hospital after my surgery, and guess what?! The PAIN IS STILL THERE! It's kind of irritating actually.
And lastly, I met with my Oncologist today. This is my cancer doctor. She is actually quite fantastic. We discussed treatment options, and when I would start my chemotherapy. I decided it would be best if I started Chemo after the holidays. Personally, I would like to feel nauseous and tired and worn down AFTER Christmas and New Year's. But that's just a personal preference. So, JANUARY 3rd. That is THE day. The day I start Chemotherapy. 5 days on, 3 weeks off. 6 months of therapy.
And guess what? I have planned when I am going back to Utah. Excited to find out when?? Yeah, you will... eventually! :)
Anyways, that's all for now. More confessions to come.
- J
Tuesday, December 14, 2010
Sunday, December 12, 2010
I Blame the Drugs
I laughed when I realized I had written a blog post on here, especially since I had no recollection of writing on my blog. Actually, I have no real memories of my hospital visit starting with being wheeled away after pre-op until I had visitors Tuesday night. That is two days of NO memories. I am 90% sure that I sent out many texts, and facebook messages while .... intoxicated :) Along with the blog post, but still, I blame the drugs entirely. So please, on behalf of my poor self, I ask for your forgiveness.
Here are snaps taken of my hospital visit:
Anyways, that's all for now. More confessions to come.
- J
- J
Tuesday, November 30, 2010
That One Time I Got My Tumor Removed
So, I went into the hospital at 9:00 Monday morning where I met with the Surgical Center. I then walked to Radiation, back to the Surgical Center, followed by a walk BACK to the radiation. I got an MRI done, which was supposed to be a short (15 min max) MRI, that instead turned out to be an hour long MRI.... Not good for someone who is super claustrophobic. The nurses brought me to pre-op where they got me hooked up to the IV. After pre-op, I was sent over to Surgery. While I was asleep, they put in a catheter and an artery (iv) in. When I woke up, the catheter was in still, but fortunately, the artery iv was being taken out while I was slightly not really there. Although the catheter was rather painful (especially when someone leaned on it) it came out relatively easy. When I woke up, I looked up and my mother pointed out my Teddy Bear - Harry "Jeremy" Camkn Baker. He had his head wrapped in gauze, all around. And, had a little hospital bracelet. It was adorable. Not gonna lie.
I have been very anxious!! You have no ideaaa. Just now, I was moved into a regular hospital room where I had my nasty (bloody) IV taken out, and my oh my, it just hurts SO much less! Still kills of course, but I can't complain... It DEFINITELY could be a lot worse. But, I can barely keep my eyes open and focus on what I am typing or saying. It's kinda interesting :)
I sent Elder Stokes both a birthday package, and a Christmas day package- how awesome, huh? He better like those packages! In his birthday package, I sent sour candy and a letter, etc. In his Christmas package, there were mints and Christmas bows, and a brand new tie. Which is sweeeet!
So, goodbye Winifred, my dear dear friend. It has been good while It lasted, but I understand we won't be besties forever. It just can't be. Not tumor and me. Not us, not we. So, Freddy, we have to start seeing other people. Me, other boys; You, other tumors or heads. ;)
Let me know if you have any questions, okay?
Anyways, that's all for now- More confessions to come.
- J
Wednesday, November 24, 2010
BRAIN TUMOR UPDATE
Name: Oligodendroglioma
Grade: 2
Well, the pathology kind of came back. The tumor is an Oligodendroglioma. It is a stage 2, which is a slow growing tumor. The oncologist says it could have been there for 6 months, a year, possibly even longer than a year. This type of tumor often develops from a with a single cell deviance on chromosome #1 or #19. However, there is still a pathology problem --the tests didn't come process correctly. But the deviance comes from at least one chromosome, either 1 or 19. It still could be both. If it is both, the chemo will work much more effectively.
For now, I am scheduled for more brain surgery on Monday afternoon (12:00- just got the call). I'll have another MRI right before to help guide the neurosurgeon. That means I'll probably have to go into the hospital by 9:30 am. I still have a fair amount of tumor in front of the hole left from the previous surgery, which should come out easily. Behind the hole is a smaller part of the tumor. But the tumor appears to be growing that direction. And that direction has critical brain function, unlike in front. So the neurosurgeon will "push" to get the tumor gone from that part, but without "pushing" too much. The area between the tumor and leg paralyzation is about 1", so there is a lot of room, he just has to be aggressive, but not too aggressive. My hospital stay should be only a few days, as before. (I am expecting to be home Wed-Fri, depending on how I recover, and how I handle the nausea, which is usually my downfall. :) They will then send new pathology out for testing (NIH) to see if they can get a clearer pathology result.
After I recover for about 3 weeks, I will start chemotherapy. It is pretty easy, as far as chemo goes. Chemo will be given once a day for about 5 days, then I'll recover for about 3 weeks. (one month cycle). This will repeat for 6-12 months. I should be able to go to school part time or work part time during the chemo, with the understanding that the 5 days on chemo, I will be much sicker than the 3 week recover afterwards. I plan on taking a class or two from NOVA while taking an independent study class from BYU. If Chemo isn't too hard on me, I am aiming to return to Utah in the summer. But, if the Chemo is harsher, and I react poorly, I might not return until next winter semester... And a year away from my home... Kills me.
We love our oncologist and are liking our new neurosurgeon better and better. They are both listed as one of the best in their fields for the Washington D.C. metropolitan area. My recovery is going great and I am anxious to get this next surgery done quickly. (One reason we like the doctor. He really listened to me and adjusted his surgery schedule to fit me in quickly since that is what I wanted....)
So, my old friend Freddy (Winifred) is being taken out in an invasive, slightly risky, surgery. And he is not too happy about it. Heck! If I were being removed piece by piece from my home, I would not be too happy about it. Especially if I was just a baby! And poor Freddy is just so young... He'll have a tough time being away from his mommy, but I'm pretttty sure that his mommy will be better off without him (as sad as that sounds).
Anyways, that's all for now- more confessions to come.
- J
Sunday, November 21, 2010
That One Time My Wig Still Fit (And Other Memories)
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| Molly + Me |
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| Molly + Me |
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| Me and Kim Hodgdon |
| Keva Cochran + Me + Amy Lacrosse |
| Me + Lindsey Bush |
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| Amy + Me + Keva |
So, worried that the wig may not fit, I put together the perfect outfit for chaperoning Mormon Homecoming (an event that I started a 3 years ago in my senior year of high school when I realized that our school homecomings didn't provide an opportunity for youth with higher standards to have an appropriate outlet):
Diamond Necklace - $35.00 - Cookie Lee (graduation gift from Yazmin Galloway)
White Rampage Pumps - $5.00 - D.I.
Forrest Green Cartigan - $20.00 - Forever 21
Creme Aidan Mattox Dress - $40.00 - Nordstrom Rack
Worthington "Snake Skin" Handbag - $5.00 - Thrifted @ the Thorley Yard Sale
Total 'Cost' of Outfit = 105.00 + tax
Are you thinking that's expensive?? Well, I bought the dress this week- 75% off!! So, it was WELL worth it. Isn't it beautiful?? Well, nice thing about owning as much clothes as I do, is that I always have perfect accessories and clothing to match whatever new clothing item I have purchased. Brilliant, I know. Haha. And for the record, the wig still fit!
Anyways, so I chaperoned MoHoc last night. First I went over to Aimee Hilton's house where I helped the girls get ready. I did Katherine Weigl, Molly, and Ariel Stong's hair. Those girls, along with Aimee, looks beautiful!! Katherine's hair turned out better than I could've ever imagined. It was gorgeous. Amy Lacrosse picked me up from the Hilton Residence and we drove to MoHoc together. Keva soon joined us, and it was so much fun. I also had the opportunity to dance with one of the other chaperones twice. He is the father of one of my good friends from high school and he is an amazing dancer. I asked if he would waltz with me at some point, so he found two songs and we danced to them. The first was long, and a Viennese Waltz, and so you are waltzing twice as fast as usual. It was SO much fun, and I've never danced a Viennese Waltz very well AT ALL, so I was amazed at how well I danced it. I was in perfect form, and I just moved across the floor with pure elegance. People commented afterwards at how beautiful our waltz was, I smiled, and appreciated the compliment. Then another waltz followed half an hour later, and it was shorter and slower, and was just so fun. Overall, a great night!
So, I found these pictures that I haven't posted, so enjoy::
| Emily, Miranda, Me |
This picture is from a hang out with Jesse Wride + crew after General Conference on Saturday.
| Right after I got admitted pre-surgery - November 1 - 5:00 am |
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| Rebecca Carper, Me, Haley VandeMerwe |
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| Me, Hannah Marsh, Lisa Rowley |
Anyways...... That's all for now. More confessions to come.
- J
Thursday, November 11, 2010
That One Time I Got My Staples Removed
I've been counting down to today. Today was THE day. The day my stupid staples got removed.
I must admit, two days ago, they started REALLY bugging me. SO, without approval from the parentals or the doctors, I started pulling out my staples. I only got two out before my Father told me not to pull out ANY MORE. He found some gause and medical tape, and covered my incision so that it would not be tempting. Yesterday still bothered me though. I wanted the staples gone SO bad. Fortunately, today my mother drove me up to Connor (sister Katie's husband)'s house and with the handi dandi stapler remover the doctor gave us before leaving the hospital, Connor removed the staples.
The first one was painful. I won't lie. But once Connor figured out the best way to do it, he popped out nearly all of them with only a little pinch. One staple was being difficult and I think he wanted to stay. But despite his fight, Connor took that little bugger and threw him in the trash. Good thing Connor is a real man. I would've felt guilty and let the poor staple stay. Yes, I'm being serious.
This picture was taken after I spent like 30 minutes carefully cleaning it. The picture below was taken RIGHT after the staples were taken out.
Okay, so despite the painful (probably more painful emotionally than physically) staple removal time, I did get to see my ADORABLE niece Emmeline (Katie & Connor's) and hold her and let me just tell you. Pictures do not do this baby justice. She is just so precious. And no, i'm not just biased because she's my niece. She really is a cute baby. See for yourself:
So precious.
Anyways, that's all for now. More confessions to come.
- J
I must admit, two days ago, they started REALLY bugging me. SO, without approval from the parentals or the doctors, I started pulling out my staples. I only got two out before my Father told me not to pull out ANY MORE. He found some gause and medical tape, and covered my incision so that it would not be tempting. Yesterday still bothered me though. I wanted the staples gone SO bad. Fortunately, today my mother drove me up to Connor (sister Katie's husband)'s house and with the handi dandi stapler remover the doctor gave us before leaving the hospital, Connor removed the staples.
The first one was painful. I won't lie. But once Connor figured out the best way to do it, he popped out nearly all of them with only a little pinch. One staple was being difficult and I think he wanted to stay. But despite his fight, Connor took that little bugger and threw him in the trash. Good thing Connor is a real man. I would've felt guilty and let the poor staple stay. Yes, I'm being serious.
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| My head.... Staples GONE. Gross, I know. |
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| Gross, Huh?? |
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| Mom holding baby Emmeline |
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| Me with Emmeline right before I went home... |
Anyways, that's all for now. More confessions to come.
- J
Tuesday, November 2, 2010
That One Time I'm in the ICU
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| Just admitted in the Hospital |
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| Prepping for the MRI |
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| Post Surgery- Day One ICU |
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| Top of head... You can see the wound... |
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| L-shaped scar! |
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| Feeling like crap in the ICU... |
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| Gourmet Dinner ;) |
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| Day Two - ICU |
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| Trying to smile... |
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| Hospital Room (ICU) |
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| Mom says it looks like a turban... This is me asleep:) |
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| Day Two - ICU... Mom even made me laugh. |
When I woke up I was MISERABLE. I was in recovery and was confused and emotional and in pain. I kept trying to pull out my breathing tube, but that's all I really remember. Next thing I knew, I was waking up in the ICU and my mommy was there. I woke up a few hours after the surgery and have been doing relatively well considering all that's happened.
My dad called me yesterday and told me not to buy into labels, that even though the doctor had carved a big "L" on my head, didn't make me a loser. My dad is a funny guy.. Speaking of my dad's funny cheesy jokes. Being in the ICU reminded me of the joke my dad would tell us when we were little and how Picabo Street used to work in the Intensive Care Unit, but finally she had to find a new job because every time she'd answer the phone, she'd say "Picabo, ICU" (Picabo, I see you)... HAHA. Oh my daddy:)
Yesterday I had 3 visitors. Jodi Dahl Wilson (my dad's cousin) came first and brought my mom some food, and brought us some things to do. Later on she brought me flowers! They're not allowed in the ICU, but I'll have them in my floor room when I get transferred this morning. Next came Uncle Dave Smith (mom's brother) who was in the neighborhood and stopped by. It was fun to see him. Plus, it gave mom a chance to run downstairs and get my stuff from the car. (Aka, I was FINALLY able to update my facebook status! Ha ha.) Then a little before 9, my friend Jennie (we were friends back in the Annandale Stake in VA) came by and brought me Chunky Monkey! It's one of my favorite ice cream flavors:)
Then at midnight, they took my down to Radiology where they did a CT scan of my brain to see if there was bleeding in the brain- apparently there isn't, so that's good news! This morning I have a splitting headache... A literally head splitting headache. Meaning, my head is split... and in pain. :)
I am pretty up for visitors. I'm exhausted though, so hopefully if you wanna come visit, I'll be awake. But, I've been up and around a little bit- using the bathroom on my own, and functioning pretty well, which is a HUGE miracle cause I am always recovering terribly from surgeries. I seriously consider myself blessed.
Anyways, that's all for now. More confessions to come.
- J
Monday, November 1, 2010
That One Time I Went to the Hospital... More than just a routine check..
By the time most of you read this blog post I will be in the middle of a surgery. I don't know a better way to tell the world what's going on.... So you are the lucky ones who get the first update. At 5:30 am I am admitted into the hospital and after paper work, MRI's, and other prep, I will undergo a minimal 3 hour operation where they will cut into my perfect head, cut through my skull, and dig around in my pre-frontal lobe. Sounds fun, eh? You're thinking "no"? Well, some of us are trying to think positively!
Well, Friday I went in to the hospital for 2 hours where I got branded and had blood tests and an ekg done prior to my admittance. I was told if I removed my bracelets I'd have to pay another 125$ to have the tests redone. Not letting that happen. So, the entire weekend I've felt the bracelets, and seen them, and just been freaked out.
In 4.5 hours I will be in the hospital. Crazy huh??? Wanna know something else crazy? I wasn't allowed to eat after 11:00 pm, so I made some pasta, and even though I finished it going "I feeeeel so full!"As soon as it hit 11, I was instantly starving again because I must admit I love food.
Anyways, more updates to come. But, for now.. Thank you for your prayers and thoughts- they mean a lot to me.
Anyways, that's all for now. More confessions to come,
- J
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| My Hospital Tags |
In 4.5 hours I will be in the hospital. Crazy huh??? Wanna know something else crazy? I wasn't allowed to eat after 11:00 pm, so I made some pasta, and even though I finished it going "I feeeeel so full!"As soon as it hit 11, I was instantly starving again because I must admit I love food.
Anyways, more updates to come. But, for now.. Thank you for your prayers and thoughts- they mean a lot to me.
Anyways, that's all for now. More confessions to come,
- J
Friday, October 22, 2010
The One When I Got a Tumor..... Not a joke......
SO.... What is this tumor I speak of?
Ladies and Gentleman, I'd like to introduce you to my new friend Winifred....

Yes, Winifred is a man... Despite his girly name. Winifred just must be a boy. He is the little.... okay, not so little.... blob in my prefrontal lobe. Aka, the very top right part of the front of mybrain.
Winifred is most likely a pilocytic astrocytoma- which is a low grade glioma. BUT they aren't sure yet.... It's still up in the air. I see a neurosurgeon on Tuesday morning. The doctor I am seeing is in the practice with Dr. Howard R Reichman who is supposed to be one of Utah's premier neurosurgeons. So, I feel I am in good hands. After Tuesday, I'll have probably a lot better understanding of what the HECK Winifred is doing in my noggin. He was not invited.
SO.... How does Winifred affect my life?
Well, my dear friends, I have some interesting news regarding the influence of Winifred in my life... I shall call him Freddy.... Freddy has made my life a little too difficult, so in the next two weeks, I will be home and in the loving care of my wonderful family. GOOD news for you people in D.C. I will be free for partying in a few weeks. BAD news for you Utahns... I'm gone... for at least 10 months... if not more. :/ More updates regarding this info... later....
SO.... How did they find Freddy?
Well, the past few weeks I'd been having memory issues. Like, I'd be somewhere and not remember getting there. Or someone would hand me my ID or credit card, after I had apparently given it to them at the store or wherever. I'd send texts or make calls without remember a single second or single word. How about that time I remember putting on my brown flip flops by the door way, and then twenty minutes later I am walking around BYU campus and I look down and I am wearing my orange flip flops... What the heckkkkk happened in those 20 minutes?! Weird. Anyways, so my short term memory is SHOT.
Then I noticed my mood was a little sketchy.. Like I was having crazy random outbursts of anger or sadness or just frustration, etc. and I couldn't control it.
At first I thought I was just going crazy.... I was like... I am LOCO. BUT, then on Sunday night while I was at work I fell to the ground and grabbed my face and just couldn't say or do anything. It only lasted about 2 minutes but it was INSANE how much it hurt. Then, over the next 2 days they started happening a little more often. Then while I was in class on Wednesday morning I got one of my headache episodes, so I called up the doctor and had them squeeze me in, in the next 10 minutes. So I left class and went over there. It was 9 am.
The doctor was a little concerned but told me not to worry because out of the hundred patients he'd sent to the hospital for CT scans, no one had a brain tumor. I took my paperwork and I was sent down to get the CT scan. They did one and then as I was waiting for results, pulled me back in, put an IV in and put a contrast in my blood stream and did another CT scan. The contrast was the weeeeeirdest thing. It felt like I was peeing my pants, drowing in boiling hot water, and unable to breathe all at the same time. The sensation only lasted for like 3 minutes, but it was a weird 3 minutes. The technician kept saying that he knew I'd think I peed my pants, but I didn't. As soon as the sensation hit, I was like... "Oh my gosh! I just peed my pants... this is embarrassing. I'm the one person who couldn't hold it in.... Awkward!" But much to my (rather pleasant) surprise, there was no peeing of the pants!! Hooray!
So, I waited for like an hour... (missing my 2 classes now).... And finally the technician came and pulled me into a room where my doctor had called in. He talked to the radiologist and they saw something that concerned them. The technicians told me not to worry, it was probably nothing, and they showed me the CT scan. Lucky for me, I have taught myself how to read the CT scans, so I knew what to look for, and even I was concerned and worried. Those technicians need some practice. That's all I'm saying. It was this giant dark spot on the prefrontal lobe on the right side of my brain. I was like... uh... that's HUGE! But they assured me I'd be fine. So, I waited there with the IV in my arm for about half an hour more. It was now about 1:30.
They called the Radiology wing of the hospital and asked if they could squeeze me in for an immediate M.R.I. So I walked myself down to radiology and got drugged up (I am EXTREMELY claustrophobic) and waited for the M.R.I.. It was weird, for sure. I knew something was wrong. I could just tell. I was alone in the hospital all day, and I was scared, and I was crying, and I was freaking out. I talked to a few friends, and they told me not to worry, but it didn't help. After the drugs kicked in, about 2:30, I went in for the M.R.I.. They made it as easy on me as they could, and I did about 3/4 of the M.R.I., and then they woke me up and put more weird stuff into my IV. I did not like the waking up part, IV part, or the whole, going back in to the M.R.I. part. The whole experience was displeasing. Entirely.
Rani and a few friends picked me up from the hospital at 3:30, so that 1) I could get home, and 2) Someone could drive my car home ... since I drove myself to the hospital.
When I left, the hospital peoples told me that I'd get my results probably by tomorrow. That made me worry, because at 5:30 I got a call from my doctor.... He said he hated to tell me this over the phone, but he thought I should know that I had a low-grade glioma. I was alone in my apartment, and just started frantically walking around as I started blocking out everything else he was saying. Responding with "okay" and "uh-huh" to everything he said. A tumor. A freaking tumor! He then said, "Well, looks like you beat the odds, cause you're the one patient that has actually had a tumor." It would've been funny......... If I hadn't just been told I had a tumor.
SO.... How do I feel about Freddy?
I just went outside and started bawling. Uncontrollably. I tried calling my house. No answer. Tried calling my dad. No answer. Tried calling my mom (about a dozen times).... No answer. But hey! Eventually I got a text that said she was in a meeting and she'd call later. I texted her and told her "No. Call now!" Next time I called, it went straight to her voicemail. REALLY MOM?! I tried calling Natalie. Tried calling Katie. No answer. So feeling scared and desperate, I called my friend Mike. He actually answered, and I told him I had bad news..... I told him what I just told you, but while crying like a little baby. (Okay, not my baby cry- for those of you who LOVE my baby cry... More like crying like a little kid who just fell off their bicycle cause some craaazy person ran over them with a car. Like hysterics. Mike listened, and that meant everything to me... I don't know what I would've done without him.
Finally my mother called and I swear for 5 minutes I had to convince her I actually had a brain tumor. Pretty sure she thought I was joking. I was like "Mom, way to stay in your meeting when your daughter has a brain tumor." And she responds, "A little girl is about to get baptized..." blah blah blah.. Mean while, I'm freaking out, and I'm like "I HAVE A BRAIN TUMOR." She did not believe me... Until FINALLY, I said "MOM. The doctor JUST called. I have a BRAIN TUMOR." Then she reacted like a mother should react. Concerned. Thank you mom for finally believing me. Love you.
Anyways, so the next morning I was told what type of tumor they think it is, and they set me up with the Neurosurgeon. My Aunt Carol was nice enough to come with and ask those "mom questions"... questions that little brain tumored bald girls don't think of asking. All I could think was .. DANG THAT'S HUGE.... and at least if I get chemo I don't have any hair to loose.... and even Crap! There goes my perfect head.... All the thoughts a girl in denial should think.
I swear. I bawled uncontrollably all Wednesday. Laughed most of Thursday. Even told the Doctor I thought he was pulling a joke. He assured me he wasn't. And Friday I alternated between crying and laughing. Still completely in denial. I keep telling myself that I'll wake up and it'll all be gone. I'm just faking it.
DISCLAIMER: I am NOT faking it. There really is a brain tumor. His name is Winifred "Freddy", and he is causing me great pain. Physically and emotionally. I hate him.
Anyways, that's all for now. More confessions to come.
- J
Ladies and Gentleman, I'd like to introduce you to my new friend Winifred....

Yes, Winifred is a man... Despite his girly name. Winifred just must be a boy. He is the little.... okay, not so little.... blob in my prefrontal lobe. Aka, the very top right part of the front of mybrain.
Winifred is most likely a pilocytic astrocytoma- which is a low grade glioma. BUT they aren't sure yet.... It's still up in the air. I see a neurosurgeon on Tuesday morning. The doctor I am seeing is in the practice with Dr. Howard R Reichman who is supposed to be one of Utah's premier neurosurgeons. So, I feel I am in good hands. After Tuesday, I'll have probably a lot better understanding of what the HECK Winifred is doing in my noggin. He was not invited.
SO.... How does Winifred affect my life?
Well, my dear friends, I have some interesting news regarding the influence of Winifred in my life... I shall call him Freddy.... Freddy has made my life a little too difficult, so in the next two weeks, I will be home and in the loving care of my wonderful family. GOOD news for you people in D.C. I will be free for partying in a few weeks. BAD news for you Utahns... I'm gone... for at least 10 months... if not more. :/ More updates regarding this info... later....
SO.... How did they find Freddy?
Well, the past few weeks I'd been having memory issues. Like, I'd be somewhere and not remember getting there. Or someone would hand me my ID or credit card, after I had apparently given it to them at the store or wherever. I'd send texts or make calls without remember a single second or single word. How about that time I remember putting on my brown flip flops by the door way, and then twenty minutes later I am walking around BYU campus and I look down and I am wearing my orange flip flops... What the heckkkkk happened in those 20 minutes?! Weird. Anyways, so my short term memory is SHOT.
Then I noticed my mood was a little sketchy.. Like I was having crazy random outbursts of anger or sadness or just frustration, etc. and I couldn't control it.
At first I thought I was just going crazy.... I was like... I am LOCO. BUT, then on Sunday night while I was at work I fell to the ground and grabbed my face and just couldn't say or do anything. It only lasted about 2 minutes but it was INSANE how much it hurt. Then, over the next 2 days they started happening a little more often. Then while I was in class on Wednesday morning I got one of my headache episodes, so I called up the doctor and had them squeeze me in, in the next 10 minutes. So I left class and went over there. It was 9 am.
The doctor was a little concerned but told me not to worry because out of the hundred patients he'd sent to the hospital for CT scans, no one had a brain tumor. I took my paperwork and I was sent down to get the CT scan. They did one and then as I was waiting for results, pulled me back in, put an IV in and put a contrast in my blood stream and did another CT scan. The contrast was the weeeeeirdest thing. It felt like I was peeing my pants, drowing in boiling hot water, and unable to breathe all at the same time. The sensation only lasted for like 3 minutes, but it was a weird 3 minutes. The technician kept saying that he knew I'd think I peed my pants, but I didn't. As soon as the sensation hit, I was like... "Oh my gosh! I just peed my pants... this is embarrassing. I'm the one person who couldn't hold it in.... Awkward!" But much to my (rather pleasant) surprise, there was no peeing of the pants!! Hooray!
So, I waited for like an hour... (missing my 2 classes now).... And finally the technician came and pulled me into a room where my doctor had called in. He talked to the radiologist and they saw something that concerned them. The technicians told me not to worry, it was probably nothing, and they showed me the CT scan. Lucky for me, I have taught myself how to read the CT scans, so I knew what to look for, and even I was concerned and worried. Those technicians need some practice. That's all I'm saying. It was this giant dark spot on the prefrontal lobe on the right side of my brain. I was like... uh... that's HUGE! But they assured me I'd be fine. So, I waited there with the IV in my arm for about half an hour more. It was now about 1:30.
They called the Radiology wing of the hospital and asked if they could squeeze me in for an immediate M.R.I. So I walked myself down to radiology and got drugged up (I am EXTREMELY claustrophobic) and waited for the M.R.I.. It was weird, for sure. I knew something was wrong. I could just tell. I was alone in the hospital all day, and I was scared, and I was crying, and I was freaking out. I talked to a few friends, and they told me not to worry, but it didn't help. After the drugs kicked in, about 2:30, I went in for the M.R.I.. They made it as easy on me as they could, and I did about 3/4 of the M.R.I., and then they woke me up and put more weird stuff into my IV. I did not like the waking up part, IV part, or the whole, going back in to the M.R.I. part. The whole experience was displeasing. Entirely.
Rani and a few friends picked me up from the hospital at 3:30, so that 1) I could get home, and 2) Someone could drive my car home ... since I drove myself to the hospital.
When I left, the hospital peoples told me that I'd get my results probably by tomorrow. That made me worry, because at 5:30 I got a call from my doctor.... He said he hated to tell me this over the phone, but he thought I should know that I had a low-grade glioma. I was alone in my apartment, and just started frantically walking around as I started blocking out everything else he was saying. Responding with "okay" and "uh-huh" to everything he said. A tumor. A freaking tumor! He then said, "Well, looks like you beat the odds, cause you're the one patient that has actually had a tumor." It would've been funny......... If I hadn't just been told I had a tumor.
SO.... How do I feel about Freddy?
I just went outside and started bawling. Uncontrollably. I tried calling my house. No answer. Tried calling my dad. No answer. Tried calling my mom (about a dozen times).... No answer. But hey! Eventually I got a text that said she was in a meeting and she'd call later. I texted her and told her "No. Call now!" Next time I called, it went straight to her voicemail. REALLY MOM?! I tried calling Natalie. Tried calling Katie. No answer. So feeling scared and desperate, I called my friend Mike. He actually answered, and I told him I had bad news..... I told him what I just told you, but while crying like a little baby. (Okay, not my baby cry- for those of you who LOVE my baby cry... More like crying like a little kid who just fell off their bicycle cause some craaazy person ran over them with a car. Like hysterics. Mike listened, and that meant everything to me... I don't know what I would've done without him.
Finally my mother called and I swear for 5 minutes I had to convince her I actually had a brain tumor. Pretty sure she thought I was joking. I was like "Mom, way to stay in your meeting when your daughter has a brain tumor." And she responds, "A little girl is about to get baptized..." blah blah blah.. Mean while, I'm freaking out, and I'm like "I HAVE A BRAIN TUMOR." She did not believe me... Until FINALLY, I said "MOM. The doctor JUST called. I have a BRAIN TUMOR." Then she reacted like a mother should react. Concerned. Thank you mom for finally believing me. Love you.
Anyways, so the next morning I was told what type of tumor they think it is, and they set me up with the Neurosurgeon. My Aunt Carol was nice enough to come with and ask those "mom questions"... questions that little brain tumored bald girls don't think of asking. All I could think was .. DANG THAT'S HUGE.... and at least if I get chemo I don't have any hair to loose.... and even Crap! There goes my perfect head.... All the thoughts a girl in denial should think.
I swear. I bawled uncontrollably all Wednesday. Laughed most of Thursday. Even told the Doctor I thought he was pulling a joke. He assured me he wasn't. And Friday I alternated between crying and laughing. Still completely in denial. I keep telling myself that I'll wake up and it'll all be gone. I'm just faking it.
DISCLAIMER: I am NOT faking it. There really is a brain tumor. His name is Winifred "Freddy", and he is causing me great pain. Physically and emotionally. I hate him.
Anyways, that's all for now. More confessions to come.
- J
Sunday, October 3, 2010
That One Time I Had A Birthday!
After the picture was taken I asked Cosmo why he wasn't looking at the camera...
He motioned that he was kissing my head. Best picture ever.
So once upon a time I bought a ticket to the last football game and I went with my fantastic roomie Kailee. We went to the beginning, then at half time went home for snackage, and went back for the end. It was sad how bad our team was. BUT we had fun, and got a picture with Cosmo, so that's pretty awesome I think:) This Saturday is the Homecoming game. It should be sweeeeet!
"Giraffe"
On my birthday! :)
Jake, Miranda, Emily, Kailee, MeMy Birthday Celebration @ Jake's apartment!
Laughing roomies... We're like best friends:)
It was an excellent birthday:)
Jake, Miranda, Em, Me, Kailee (& sadly minus Mike)Notice the beautiful JW (j.wride) antlers on Em's head ;)
My actual birthday this year was AMAZING!!!!!!!!! I woke up and went to my 8 am class. It was a good class, and after I had a meeting with my professor Peter (a good friend of Heidi's), and he wished me a happy birthday and we had a super good chat. Then I went home and watched Glee!!
After wards, I went to my diving class and Natalie Luehr had brought me two flowers and a note, and the entire diving class sang me happy birthday in front of a huge group of people. I was able to actually do the back dives we'd been working on, even though I was scared to death.
Then, I went on a little lunch date with Ethan Watts. We went to Chick-Fil-A and got some DELICIOUS food!! And then I got a free shake from Iceberg because it was my birthday! I got a birthday cake shake, of course :) It was delicious. On the way back to classes, I was driving my stick car, so Ethan decided to feed me... It was the most ridiculous thing of my life. He started out giving me reasonably sized bites, and it was all good until he started stuffing my face quicker and quicker with bigger and bigger bites until I was laughing so hard that icecream was literally everywhere in that car. It was gross. But some of the most fun I've probably ever had.
After I dropped Ethan off, I went and got changed for my last class of the day. When I met up with my class, a friend Jenny gave me a flower:), my TA brought cookies for the class, and my class sang me happy birthday! This is my Intro to Outdoor Recreational Activities, so for class we drove to Utah lake and went kayaking!! It was absolutely incredible!!!! I kayaked halfway across the lake, then on the way back we went through thousands of reeds where I was only a few feet away from a Great Blue Heron. It was beautiful and was so still. Then I spent thirty minutes kayaking out of the reeds to find the rest of the class. It was remarkable. And lucky for me, since it was my birthday, no one tipped my kayak! :) Just as I was kayaking up part of Provo River, I kayaked through probably 100 ducks. They were on both sides of me, and they were right next to me. I've never been so close to so many beautiful ducks. It was remarkable. The entire night was AMAZING. What an incredible experience.
Michael and I then went to a talk by Brother Randy L. Bott about the Family. I was so glad I went, it was a really well given talk and it was a good reminder of the importance of families.
I then picked up Emily, Miranda (who I met that day), and Kailee and we drove over to Jake's apartment where we met up with Jake and Mike. At this point we'd been spending a lot of time with these boys. We met Mike on Friday (Jake i've known for a long time now), and hung out with Jake and Mike Friday, Saturday, Monday?, Wednesday (then Thursday, Friday, and Saturday!). It's been a really fun week. Let me just say. We ate lots of yummy food and played guitar hero and just hung out. Jesse and Brittney stopped by and Brittney played Phase 10 with us for a while, while Jesse and Jake hung out some. I was so lucky to have all of my favorite people over at Jake's for the PERFECT ending to the most wonderful Birthday I've ever had.
After wards, I went to my diving class and Natalie Luehr had brought me two flowers and a note, and the entire diving class sang me happy birthday in front of a huge group of people. I was able to actually do the back dives we'd been working on, even though I was scared to death.
Then, I went on a little lunch date with Ethan Watts. We went to Chick-Fil-A and got some DELICIOUS food!! And then I got a free shake from Iceberg because it was my birthday! I got a birthday cake shake, of course :) It was delicious. On the way back to classes, I was driving my stick car, so Ethan decided to feed me... It was the most ridiculous thing of my life. He started out giving me reasonably sized bites, and it was all good until he started stuffing my face quicker and quicker with bigger and bigger bites until I was laughing so hard that icecream was literally everywhere in that car. It was gross. But some of the most fun I've probably ever had.
After I dropped Ethan off, I went and got changed for my last class of the day. When I met up with my class, a friend Jenny gave me a flower:), my TA brought cookies for the class, and my class sang me happy birthday! This is my Intro to Outdoor Recreational Activities, so for class we drove to Utah lake and went kayaking!! It was absolutely incredible!!!! I kayaked halfway across the lake, then on the way back we went through thousands of reeds where I was only a few feet away from a Great Blue Heron. It was beautiful and was so still. Then I spent thirty minutes kayaking out of the reeds to find the rest of the class. It was remarkable. And lucky for me, since it was my birthday, no one tipped my kayak! :) Just as I was kayaking up part of Provo River, I kayaked through probably 100 ducks. They were on both sides of me, and they were right next to me. I've never been so close to so many beautiful ducks. It was remarkable. The entire night was AMAZING. What an incredible experience.
Michael and I then went to a talk by Brother Randy L. Bott about the Family. I was so glad I went, it was a really well given talk and it was a good reminder of the importance of families.
I then picked up Emily, Miranda (who I met that day), and Kailee and we drove over to Jake's apartment where we met up with Jake and Mike. At this point we'd been spending a lot of time with these boys. We met Mike on Friday (Jake i've known for a long time now), and hung out with Jake and Mike Friday, Saturday, Monday?, Wednesday (then Thursday, Friday, and Saturday!). It's been a really fun week. Let me just say. We ate lots of yummy food and played guitar hero and just hung out. Jesse and Brittney stopped by and Brittney played Phase 10 with us for a while, while Jesse and Jake hung out some. I was so lucky to have all of my favorite people over at Jake's for the PERFECT ending to the most wonderful Birthday I've ever had.
Anna Tomaselli, ??, Ethan Watts, Catherine Caramella, Lisa Mackley, Karrae Brunner
Me, Miranda Johnson, Emily Snow, Michael Slawson
Jake, Me, Mike, Court
(*Notice that face on the bottom of the shirt is Court's)
Michael, Me, Ethan :)
So Thursday was the Kailee + Jenna Birthday Extravaganza! Before the party I got a call from Michael Slawson who told me to meet him in the parking lot... I walked out to find him in a car with Catherine Caramella... I got in the car and we started driving. To my pleasant surprise!! On the fence as you drive up towards I-15/the mall, my name was spelled in the cups there. If you know Provo, you know what i'm talking about. It was awesome!! Especially since I've always wanted my name up there, and Michael knew that:) When I got back we headed over to the party. There were actually a LOT of people who stopped by at different times of the night, and I was super excited about it. It actually shocked me that no one from my freshman year stopped by, but I was more than satisfied with who showed up. It really meant so much to me that so many people were willing to stop by even though they were busy! SO THANK YOU FRIENDS!! (And I apologize if you are not pictured... I still adore you.)
SOOOOOOOO.... Emily and I have been getting all dressed up the past few days. It's been super fun. And these are a few pictures from our random adventures.
Kai and I went to Women's Night at the Bookstore where we got autographs and pictures with authors, musicians, artists, etc. It was a suuuper awesome night. And I was so glad to have Kailee with me:) I even got to meet her family!
As for the events not pictured... That would consist of the hang outs with Jake, Mike, Miranda, Kailee, Em and I. So I will summarize them here: Kailee and I went to Jesse's house last Friday where we hung out with Jesse, Brittney, Austin, Court, Jake, and Mike. We went out for ice cream and just had a good night. Then Saturday after the football game, Mike and Jake invited us over to Jake's apartment were Em, Kailee and I went and watched Angels and Demons after taking an outrageous trip to Macey's for some snacks:) Monday night we all played games at our apartment (Em, Kailee, Me, Jake, Mike)... Okay, we played phase 10. But hey! It's my favorite game! Then Wednesday was my birthday hang out mentioned above. Thursday after the Birthday Party Extravaganza- Court, Kailee, Me, Miranda, Emily, Mike and Jake all went to Jake's apartment where we watched Prince Caspian and all hung out. Friday, Mike came over after his Mission reunion and we set up and played Book of Mormon Who, and Let's Go Fishing. It was super random, but quite fun. Saturday afternoon we went to Jake's parent's house for conference. His family was great, and his mom even made us sandwiches and brought out snacks! Mike, Me, Em and Jake were there. After wards we went to Target so Em could shop for some new work clothes (SHE GOT TWO JOBS!!). It was fun, ha ha. We then re met up with them, and Jesse, and Nate Day, and brought along Miranda and we went to Chili's in AF where we all just hung out and talked, and ate food (thanks to Mike sharing!).
Anyways, that's all for now. More confessions to come.
- J
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