Some bad news, and some GOOD news!

First I need to mention that the infection I had was not a staph infection, it was an infection that's like having a zit on the inside of your head, which actually has turned out to be somewhat of a blessing- since I got an infection it was best that it was contained so it wouldn't have killed me (YIKES I hate to say that!)

ANYWAY......

I just wanted to post that I found out today I don't have to wait 4 months before I can have my artificial bone flap put in. I will have a cat scan done on Jan. 5th so they can get the dimensions of the area and start making the flap. I think the surgery will be 1-2 weeks after that, but I'm not 100% sure on the exact day. I'll post again on that. We are very excited!

Staff Infection- Another Surgery- 2 Weeks

It's been a few weeks since I've posted. Almost 3 weeks ago on a Monday, a screw in my head where the bone flap is was bothering me. By the time Dustin got home from work, it was a little swollen and pink. I called my surgeon's office and went in the next morning (Tuesday). I got a CT scan done, and yep- it was a screw coming up. The CT scan also showed a collection of fluid under my bone flap, but we could see that the area had an infection because it was more red and swollen. I was put on an antibiotic and 800mg Ibuprofin and told to come back in Friday, unless it got worse. Well, by Wednesday night it was more swollen and hurt more so I went to the ER. They put me on an IV antibiotic and told me I had to see my surgeon again in the morning. Thursday morning I go in and end up needing another surgery to clean out the infection. I had surgery and thought that I would be going home Friday or Saturday. Boy was I wrong! I was in the Hospital for 2 weeks and a day. The infection was really slow growing so I was on 3 antibiotics through a picc line rotating 3-4 times during the day and night until the Infection Control Dr. (Igor Abolnik) knew what the infection was. It came back a staff infection, and something that would be like having a zit on the inside of your head. Don't ask me what that means really, I'm just telling you like Abolnik told me. So I'm finally home now, and down to 2 antibiotics. I still have the picc line and will be on the antibiotics for another month. OH- I forgot to mention that the infection was in my bone flap so they took that out also. I have a big dent in my head. Should I post a picture? It looks weird but I don't think it looks too gross or anything. Respond and let me know if you think it would be too gross or if I should post it.

Well I need to get started on my Christmas cards.

"Some loose screws"....

Monday morning I woke up and a spot where my bone flap is from surgery was bothering me. It hurt a little but at first I thought it was just me being weird (I've had some nerve damage from surgery anyway so it's been tender in that area since). Well, when Dustin came home I was really concerned with the spot and thought it looked swollen but to be sure I asked Dustin and he agreed. I immediately called my surgeon's office and left a message. Almost an hour later nobody had called back so I wondered if maybe they were closed and called thier after-hours answering. I was instructed to go see my surgeon's Nurse Practitioner the next morning to have it checked.

Tuesday morning I go see the NP and he sends me in for a CT scan to verify what the swollen bump that is now hurting me, is. After the scan, I took the images to my surgeon's office and my surgeon was there! I was glad. So he looked at my head and at the images and tells me I have a loose screw (as if that isn't obvious already.. haha). He also said that the loose screw wouldn't cause the swelling and the pain so he has me taking an antibiotic to hopefully clear up the infection, or "abscess" as he called it. I have to go back Friday morning and get it checked. If the antibiotic doesn't help, then they'll have to cut it open and clean it out. Possibly even take out all of the screws if it's the screw causing the infection. I was pretty depressed yesterday and we are really hoping the antibiotics will take care of this. I don't want anymore surgeries please.

Voice Recognition Software

This link was just sent to those of us that belong to the oligo online support group about some voice recognition software. Someone was asking about it for a friend who had a brain tumor, and another responded with this link. It's funny so please go watch the 2 minute video about it :)

http://video.google.com/videoplay?docid=-1123221217782777472

NO CHEMO!!! YAYAYAYAY

That's about it :) We saw my neuro oncologist today and he said that my MRI looks great and I don't need chemo. He wants me to have an MRI every 3 months to keep an eye on things and see him after each one. Dustin and I are VERY happy!!!

A Wal-Mart Greeter

I have to tell you about what happened to me on Saturday, it was really neat. My friend Sherry and I went to Wal-Mart to get some things. We walk in and are welcomed by the greeter. Then, after walking into the store, the greeter comes walking up to us quickly saying "excuse me". I ignored him at first thinking he was talking to someone else, but then he was looking right at me so we stopped. He came up to us and just started telling me about his own experience with having a cancerous tumor on his esophogus that was really big (like the size of an orange?). He continued with telling me how with the power of the priesthood blessings he got, the prayers from friends and family, and having his name in the Temple how he is now cancer free and his Dr. has called him a miracle. He was SUCH a cute little old guy! Okay, not that old but in his 50's. His name is Joseph. At the end of his story, he asked me for my name for prayer purposes. I was truely inspired by this man! When he left, he thanked me for letting me share his testimony. All I can say is WOW!!!!

MRI Results

We saw my neuro surgeon tonight for a follow up. I had an MRI last week from finishing radiation therapy so he looked at the images. He said that everything looks great, but is a little concerned with a little spot. He doesn't think it's a recurring tumor but a calcified deposit. He wants to watch it. We're hoping it'll disappear, if they can do that? Anyway, I'm doing great and feeling great so yay for that!

Oh it's been a while

First, I want to mention that I got the biopsy results on my colon, and the nurse said it didn't show signs of the ulcerative colitis, but I have mild colitis. I'm hoping that the medications I've been on and will be on for another 2 weeks will take care of it and I'll be okay. I was very glad to hear that it's not the ulcerative colitis, as you could imagine!

I had my follow-up MRI yesterday and will see my neuro oncologist next Thursday. I'm anxious to see what my brain looks like and to know what's next from here. I'll post the news next week!

Another colon update (blah!)

I went in for my flex sigmoidoscopy today and they ended up doing a colonoscopy. My colon is swollen (haha that rhymes). The Dr. thinks my immune system is attacking my colon but wants to wait for the biopsy to come back from pathology. I just want to be healthy, is that too much to ask? Yep, must be! I'll post again when I get the pathology results. I hate this :(

Update on my colon....

I saw my Dr. yesterday for a follow-up and wasn't any better at all. In fact, I was worse. So he sent me to the Orem Community Hospital for a cat scan of my stomach region. I was there for over 2 hours waiting for the cat scan! I spent a total of 5 1/2 hours at the Dr's and hospital. I saw my Dr. again after my scan and my colon looks good (yay) but why do I still have a slight fever (for who-knows how long now) and I still couldn't eat? Ugh.... now I have to go to UVRMC in Provo to get a flex sodoimoscopy or something tomorrow morning. I'm not liking this! I'm actually feeling okay right now, and it's wierd- I had Arby's roast beef sandwiches for lunch (I can NEVER pass up an offer for Arby's). It was the first thing I have eaten since my 1 slice of bread Tuesday night. Oh man it was soooooo delicious.... but now I'm afraid it will come back to haunt me! So wish me luck tomorrow. My mom and my mother-in-law each have 2 of my kids so I'm enjoying some alone time tonight.

Isn't Brain Cancer enough?

I haven't posted in a few days because I have been pretty sick. Went to my Dr. today and it looks like I'm having problems with my colon. When I asked in my last post if anyone could make my life easier, I guess I got cursed for it! I can't eat anything for about 2 days- can only have clear liquids. I'm feeling better right now (since I haven't eaten all day) but my brother-in-law is BBQ'ing pork for dinner tonight and it is SOOOOO yummy.... and I can't have any :(. I'm on some antibiotics and really hoping that will take care of what's going on. I just want to be normal, that's all.

Last Day of Radiation... Let's Celebrate

I finally made it to the last day of radiation... YAY! I'll miss gabbing with the tech's every day, but I am SO glad to be done. My next MRI is scheduled for October 11, then I see the neuro oncologist (Ali Choucair) in Salt Lake on October 25 (Madelyn's 4th birthday) and I see the radiation oncologist (T.J Blair) for a follow-up appointment that morning before we head to Salt Lake. I was always told how healthy I was and never would have thought that I would get brain cancer! My Grandpa Fisk died from an un-diagnosed glioblastoma almost 4 years ago. Glioblastoma's are the deadliest brain tumor. I never knew until just days before my surgery and I always thought he died from a heart attack. Nobody knows what causes brain tumors- I may have inherited it from my grandpa, but then again, I may have gotten it from not eating healthy enough? Now I tell my kids that eating junk food causes brain cancer. I know, I'm evil! :)

No- THINGS ARE GREAT!!!

I met with my radiation oncologist for the last time (during my treatments anyway) today and he told me that I am "sailing through my treatments better than anyone he's ever seen, with being treated to the brain".... YAY!!!!!!! I am pretty excited to hear that. I really have handled my treatments well and am grateful for it. The only thing is that I am tired. I was a little nauseous in the beginning if I didn't eat but other than that, I have been great. I have 3 treatments left then I'm done. I SOOOO can't wait!

Bald Mom!

Just making a note that I had my mom shave my head bald today. It has been falling out more in the back and behind my ears from the radiation so it's all gone. I guess you can see where it had fallen out but at least it all looks *about* the same now. I'm looking forward to the cold weather so I can wear a beanie..... not looking like it will come anytime soon though! We're still having 80*-90* degree weather. UGH!

Things are good

Met with my radiation oncologist again today and all of my counts are still normal.. yay! I have 8 more treatments left. I have to admit that I'm not happy about Monday of this week being Labor Day, because now I have to go back for my last treatment on a Monday. We'll be in Idaho the weekend before so hopefully that will be a nice break for us. I'm trying to convince Dustin to find a monitor for the van so the drive isn't so hard. Traegan LOVES to yell "Mommy.... mommy... MOOOOOOM!!!" and I don't want to deal with that right now (or ever again if I can!)

Grateful for my Health

I met with my radiation oncologist this morning after my treatment, and I just wanted to say that I am very grateful for the health that I have, and how well I am responding to my treatments! I'm not on a steroid for brain swelling which was the first thing I wanted. Also, my skin isn't red or irritated from the treatments which I didn't really care about if it did get irritated but the fact that I have that 1 less thing to worry about it awesome! Plus, all of my counts have been normal (platelet counts, white cell, red cell, etc.) Other than losing my hair and being tired, I think I'm doing great. YAY!



Today was my 4 week "anniversary" for my treatments. I have finished 21 treatment and have 12 left. I will be SO glad when I'm done!

Brain Cancer Depression

When I was pregnant with Brody, I started getting these horrible headaches. I started drinking Dustin's Vanilla Pepsi's to help with my energy so I could manage my 3 little kids on top of being pregnant. The headaches would get so bad that taking a full dose of Tylenol or Ibuprofen wouldn't do A THING for them. My mom kept telling me I needed to get them checked so for once I listened!

In May 2006 I went to our family doctor, Dr. Marc Udall, about them. He told me that they were probably just migraines because "you're about that age". He sent me in for a CT scan which came back abnormal and recommended an MRI. So I had the MRI done and when I called the next day for the results, I was told I had to make an appointment. I knew it was bad. How bad though? I NEVER would have thought that I would get a brain tumor! Dr. Udall had already called a neurosurgeon for me and told me to wait for his call. The next morning was Friday and Dr. Paul Gardner called. He had me come in to see him the next morning, on a Saturday. We looked at my MRI images again and he showed me where the mass in my brain was and what it possibly was (a tumor, MS, and some other things I don't remember). Told me my options so I asked for another MRI that would tell us more definately if it was a tumor or maybe something else. That MRI came back that it was for sure a tumor. Oh geez, I was still absorbing that my CT scan 2 weeks prior was abnormal. Again, Dr. Gardner told me my options: a biopsy to test the tumor or surgery. My heck, if you're going to cut my head open you may as well take the whole tumor out! So on June 6, 2006, we scheduled my surgery for June 19 which was the day after Father's Day.

I have to add here, that we were in the process of buying our first home in the middle of all of this! We were waiting to close any day- and ended up closing on June 14, moved in the 16-17, had Father's Day on the 18 and my dear friend, Wendy, came over to cut my hair in preparation for my surgery the next morning. She cut it just like Dustin's and I thought we looked cute :)

So Monday, June 19 2006, I go in for my surgery. Everything went well I assume because I'm here today, writing this blog on it! While waiting for surgery, I visited with Dustin, my parents, sister Tina, and Dustin's parents. The hospital staff was fun too. I was nervous, but at the same time I knew everything would be okay. At this point I had left everything in the Lord's hands and prayed that I would handle surgery since I had never had surgery before. The last thing I remember before my surgery was giving Dustin a hug and kiss and telling him I love him. Dr. Gardner was wheeling me off for what he would consider fun I'm sure! (not really)

I stayed in the hospital all week. On Thursday June 22, Dr. Gardner came to see me with some news. The tumor, though it was only about a centimeter in size, came back from pathology an Anaplastic Oligodendroglioma, grade 3. It was a surprise to all of us because we expected it to come back a low grade tumor being that it was so small and I had been having symptoms for as long as I had before getting checked. Brain tumors alone are pretty rare, but the type I got is even more rare! But, everyone keeps telling me that it reponds the best to treatment so I guess that's good?

Friday, June 23 is the day I went home. Dustin's mom, Trish, was staying at our new house with Traegan and Brody while my mom had Abbie and Madelyn at her house. They're help was really great! I was a grumpy mess because of the steroids I was on. I don't remember much of the first few weeks I was home other than I had a hard time with loud noises, I got cranky fast if I didn't eat ever 3 hours, and my poor family had to put up with me! After a month and I was off the steroids I was doing more and more on my own and finally was taking care of the kids alone and was pretty happy about being about to do it! (By the way, Abbie and Madelyn got confused about where they lived since they had slept in our new house only 2 nights before they went to my mom's, so they came home the Wednesday after I came home from the hospital)


My new ward has been incredible! They bring us dinner 3 times a week, and have been since I came home from the hospital. It has really helped us out and we appreciate it so much! (and our new Bishop is John Johansen... lol... Uncle Bishop)0.
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I started my radiation therapy 3 weeks ago on August 2. Dr. T.J. Blair is my Radiation Oncologist at the Utah Valley Cancer Center which is in Provo, part of the UVRMC. I have 3 1/2 weeks left of radiation.. YAY! A month after, I'll have another MRI done then I'll go to Salt Lake to see the Neuro Oncologist, Dr. Ali Choucair, and he'll tell me if I need to to chemo therapy or not.

Well I think I've handled everything pretty well, until this past Sunday when my hair started to fall out. It really made me sad! I've liked having my head shaved short, my scar from the surgery is healing nicely and all. I knew my hair would fall out from my treatments but I guess it came sooner than I thought. I broke down and cried Sunday night for the first time. I just want this all to be over with and I want my life back!