Wednesday, February 29, 2012

Clarification

I realized that I never updated the blog with Lisa's official diagnosis from the pathology report.  I did it on facebook, but unfortunately forgot to do it here.  So, for those that aren't on facebook, two days after we returned from our Mexico vacation we received the disappointing news.  We were hoping for a grade 1 or 2 astrocytoma, but we were informed that she has a grade 3 (anaplastic) astrocytoma.  That means that it is malignant and that it is fairly aggressive.  Not what we wanted to hear, but we did receive some encouraging news that week as well.  We learned from the pathology report that she has a genetic mutation (IDH1) that should allow her to respond better to chemo.  Normally astrocytomas don't respond very well to chemotherapy, but people with the IDH1 deletion tend to have better results with chemo and tend to have a longer life expectancy.

It was probably better that we didn't receive the news when we were supposed to or that would have been hanging over our heads while we tried to relax in Mexico.  Since we didn't know the pathology results we were able to really relax and take it easy down there.

You can google it and read up on it if you want.

My top 11 list

This picture was taken Sunday after church. I tried to get a picture with all my kids, but the boys were not cooperating. I sported the blond wig last Sunday. I'll try the brunette this week.

 7.5 weeks of growth on my head. I haven't lost any hair yet from radiation or chemo. I'm sure it will start to fall out, but so far it's still growing from my pre-surgery buzz cut. Oh and notice my awesome pin. It says "Cancer Sucks!" I even got away with wearing it around my Mom. That's huge for those of you who know how she is with that word.
My top 11 things that bug me right now.
1. I wish I could drive. It's small and simple, but once your independence is taken away, you realize how much you relied on it. It'll probably be 2-3 months before my doctors will give me clearance. Darn seizures. I'll be repaying everyone back (Tracy and Sara) all next year. : )
2. So sick of the itchy head.
3. Wish the feeling would come back to the right side of my face. Hopefully with time. I've been numb on the right side of my face since I got out of surgery.
4. So grateful for Words With Friends. I love to play scrabble, so if you aren't already playing with  me, try to start a game. I'm usually maxed out. ; )
5. My appetite is almost gone. I have no desire to eat hardly ever. Except for Jamba Juice. I am loving those and Cody kindly bought me one after each treatment last Friday and Monday. I also am loving the Costco Rhodes roll dough. I've made scones daily this week. So yummy. It's the small and simple things people.
6. My motivation to clean, cook, sew, etc is almost null. I think I"m going to have to force myself to be productive and be happy afterwards. I've been a bit productive today. I actually made Blake a hooded monkey towel. I post pictures later. My in-laws took him and Cole for a couple days. I actually made two so that I'll have one ready to go when I decide to take my Etsy shop off vacation or for whatever has not sold by the time my race/auction rolls around.
7. Why do people follow my Pinterest boards. I think I've only been on once and really am not someone you want to follow. I don't think I'm even following anybody.
8. I'm so sick of seizures. I've had 4 in the past 24 hours. When I was at treatment today the docs upped my anti seizure meds to 3 times a day instead of 2. Hopefully that will help and they'll stop. I had one on my drive home (I was not driving) and then I had another one this evening.
9. Our ward has got to be the greatest in the world. They are taking care of me and my family so well. I have some awesome friends setting up a 5K run and silent auction on April 21st. You can get more details and register at www.runningwithlisa.com.There is also a fundraiser for me being held at Rock Creek Pizza Company in Sandy, on Saturday, March 10th from 6-9pm. Come enjoy some pizza, music and of course, me. : )
10. I am so sick of reading cancer books and material. I really appreciate all the information that people have given me, but I just can't read anymore. It's too depressing, everything isn't related to what I'm going through and I'd rather entertain myself with fun stuff than the depressing.
11. The obvious. I want my tumor gone and my life back to normal. I believe in miracles...it can happen.

Tuesday, February 28, 2012

Update

Lisa is now into week two of her radiation treatments.  She is going every day Monday through Friday at Utah Valley Regional Medical Center.  She will be doing this for 5 more weeks.  She is now on 6 different medications:  the ambien so she can actually go to sleep at night, the temodar for her chemotherapy, an antibiotic (dopsone) for while she is undergoing radiation and her immune system is susceptible, the Kepra for her seizures, the decadron to reduce the swelling on her brain that is triggering the seizures, and zofran to prevent the nausea that is associated with the radiation and chemo.
Here are some photos of her at her radiation appointment.  
They made a plastic "mask" for her for each treatment that holds her head in a specific position to ensure accuracy.  Kind of odd looking.


Here she is in place ready to get zapped.

A photo of her radiation team.

Last Friday I had work off so Lisa and I ran a lot of errands.  Now that she can't drive we try to maximize our time together when I'm home to get everything done that we need to.  We took a trip down to South Jordan and after going to the temple we went to a wig shop to help Lisa pick out some wigs.  Her hair should start falling out next week and she will probably be without hair for many months, so we wanted to get her some wigs before it happened.  We ended up going with the blond and the brunette.  It is weird for me to see her with a different hair color.  I often have to do a double take when I walk in to a room and see her.  Cole doesn't like the blonde one apparently.  Whenever Lisa puts it on he says, "No, not that one!".  I think my favorite is the brunette wig because it's fairly similar to what she had before, just a different color.

I decided to try on a wig for fun, and I felt like a rock star.  Maybe for Halloween this year.

Also, we have updated runningwithlisa.com and encourage you to go check out the latest information with regards to her race.  We can't thank Paul Barker enough for getting the website up and running.  Also, a very big thank you to everyone who has donated so far.  We are so grateful and emotional to see the outpouring of love and support for Lisa in all this.  Thank you everybody!

Sunday, February 19, 2012

Website

One of our good friends from our newlywed Provo days set up a website for me. You can see it at
www.runningwithlisa.com

You can make online donations and find out about upcoming events like fundraisers, my story and more.

Saturday, February 18, 2012

Update and Seizures

What a week this was. Tuesday I had an appointment at the Huntsman Cancer Institute at the University of Utah. My Grandpa worked some magic and got me in with a doctor Howard Colman. It made my Mom super happy and I couldn't complain that I was seeing one of the top neuro oncologists. I didn't learn much new though. Obviously I know I have a tumor and he just looked me over and determined with me that I should do both chemo and radiation. I've been planning on that since my surgery. It turns out that the chemo medication, Temodar, is outrageously expensive. Like for 4 days worth of pills, it cost me over $1000. I'm trying to get financial assistance through the Cancer Cares Copay Foundation. We didn't get approved yet, but are hoping to on Tuesday or Wednesday. That should drastically reduce our cost.
So Tuesday was also Valentine's Day. I bought Cody a mango slicer. We love mangoes and ate a ton in Mexico so I thought it would be fun. I also bought myself a new watch. I've managed to lose mine since the hospital. I checked with their lost and found, but no one has turned in a watch. I bought a cute white blingy OXOX one. It's super cute, but needs a notch taken out of the band.
I had a super bad headache most of Valentine's afternoon/evening plus I was freezing cold. My temperature has been very off since my surgery. Dr. Colman did labs on me while I was at HCI to check and see how my thyroid was acting. I still haven't heard back on the results of that. I am cold a lot now. I'm typically wearing long sleeves, a jacket and a beanie. So, needless to say I was not the best Valentine for Cody. I went to bed at 7:30pm with my Ambien. It has been helping me to sleep through the night. I felt bad, but my headache was not allowing me to function very properly. I was ornery and just needed to sleep because I had been gone most of the day.
Wednesday and Thursday were pretty good days and yesterday I had another bad one. Actually Wednesday night I threw up, not sure why, but I did in the sink. I had forgotten until the next morning I got up and had to clean the sink out. My good friend, Laura Jorgenson took me out for frozen yogurt Wednesday night. I don't think I got sick from that, just my messed up head and body.
Friday I spent most of the day on the computer. I started out my visiting teaching, picking Aubrey and Ridge up from preschool and taking Tucker and his friends to kindergarten. After I put Blake down for a nap I was emailing my advocate for the CCCF. I remember being in the kitchen and started to text Cody that I didn't feel well again and that I was weird and tingly feeling. It washed over me and I sat on the couch trying to let it pass. I eventually went back to the computer and put the garbage can next to me in case I was going to be sick. Aubrey tried to take it back from me, and I could not speak to her and tell her no. I ended up falling off the chair and that's all I remember.
Tracy Apostol came over around 4 or so to bring me something from my Mom. Tucker told her that she didn't want to talk to me because I was talking funny. I didn't even remember him coming home from school. Then I panicked because I realized I didn't know where Aubrey or Cole were. Aubrey was playing at Jordan's house and came home a few minutes later and Cole was asleep on the floor in his room. I remember sending him there because he dumped an entire water bottle on the floor. Blake was just waking up. I must have blacked out because there was at least an hour that I don't remember. I started to piece it together that I must have experienced a seizure. I sent Cody a text, but he was at the Utah Dental Convention and couldn't leave the middle of his lecture. Finally he told me when he'd be home. After he arrived home, I had another seizure. It was not nearly as bad as the first, I didn't black out, but I got the weird tingly feeling again for about 5-10 minutes. He had me lie on the ground so that I wouldn't fall down.
After speaking to Tucker and Aubrey about how I was acting earlier in the day, Aubrey told me I was drooling when I was on the ground. That makes sense because I knew I was trying to speak but I could not talk. She said that I told her she could play at a friends house. Tucker just thought I was talking funny.
I actually had a friend/neighbor come by at the beginning of my first seizure, although I had no idea that's what it was at the moment. She later told me that I had some slurred speech and didn't seem to be able to make eye contact.
I spoke to my surgeon today and he prescribed me anti-seizure medication. The downside to it, is, I will have to be on it forever once I start it (which should be now - I'm a bad patient, but I haven't had any seizures today.) I'm just adding it to my pile of pills I start taking tomorrow. Yippee! The following are 2 pictures of me with my wig on. It's very cool, because it is actually my real hair, I can wash it, style it etc. The only problem with it is, there isn't any hair on the top of the wig, so I must wear a hat with it, or else it looks like I'm wearing a nylon on my head. I'll try to get a picture of it on here soon.


On a side note, we have a good friend that set up a website in my behalf today. It's called www.runningwithlisa.com. People can donate money, items for an auction and see what my story is. Cody's office staff ladies are going to set up a fundraiser 5K for me in March or April. Just today, since the website went live, friends have donated over $2200. That is going to help so immensely - it's amazing!
Thank you to all for your love and support. My battle is just beginning again, so thank you for keeping us in your prayers.

Mexico

Mexico

I have been putting this post off for awhile knowing it would take me some time to write. Cody and I spent a very relaxing week in the Caribbean January 28th through February 4th with his parents, my parents and Cody's brother and wife. Cody did some trade work with his hygienist's husbands family for a house they own in Akumal, Mexico. It is located between Playa Del Carmen and Tulum. Cody and I actually stayed in this town on our honeymoon almost 9 years ago. We were so excited that I was healthy enough to take the trip and that we were able to share it with our family. After all the stresses associated with the surgery and my tumor, we were very anxious to get away and relax.  We had this vacation planned since last summer, but when I was diagnosed with a tumor, we weren't sure I would even be healthy enough to still go.  Thankfully my surgeon gave me the good to go, as long as I physically took it easy and didn't dive under the water and be exposed to that pressure.  The house was right on the beach and had 4 bedrooms, so there was plenty of room. We left on a Saturday morning and had direct flights into Cancun. We met Carson and Marisa at our car rental place at the airport and then we zipped down to our house. The first night I was amazed by how many little crabs were EVERYWHERE!!! Of course, Cody has to touch everything, so he picked one up for a picture.
This was our view from the beach looking up at the house Sunday morning. Just gorgeous!
We had kayaks available to us, so one of the first things my parents did was try them out. They really were a lot of fun!
The Calderwood men. Cody worked out for a couple months prior to this vacation and you can tell. He's had many people joke that he did spray on abs. Nope. He really has them. Too bad he can't tan, lol.  His brother, Carson, is on the left and his Dad is on the right.  No Carson isn't a giant, the way the photo turned out makes him look a foot taller than the other two.  It's kind of funny.
My parents and me.
The snorkeling was awesome right in our little bay. The coral reef is right there. We saw many tropical fish, most of which I don't know the name.
This is Cody snorkeling. He went every day and saw lots of different animals like octopus, sea turtle, manta ray, barracuda, and many of the typical colorful fish like sergeant major, butterfly fish, blue tang, and more .
Our pool. I think only half of us actually used the pool. It was too cold for me vs. the ocean. I love the turtle on the bottom with the blue tile.
One of the best past times of the trip. Reading in the hammock or on the lounge chairs.
Again, Cody has to touch everything and managed to capture this little gecko one night. Too bad Tucker wasn't there, he would have loved the animals.
So Sunday we hung out at the house and got some much needed relaxation.  On Monday we ventured out. Cody's parents and brother went to Tulum and Coba. Cody and I have been there twice  before and my parents have been their before as well. Cody took us to a ruin that isn't visited as much called Muyil. It is about 20 minutes south of Tulum.
I tried to catch some rays whenever the sun was out!  The weather was fantastic the first 5 days, then some rain clouds rolled in at the end of the trip.
Look how much hair I have! I believe this is about 3 weeks of growth. Way more than Cody!
We drove to Playa Del Carmen one day and took the ferry over to Cozumel. We took all our snorkeling gear so that we could check out some of the best diving places in the world.
We saw barracuda, needle fish, angel fish, parrot fish, stingrays and many little colorful fish. 
This is a crazy rock fish of some sort. Surprise, surprise that Cody is holding it!
 
This one is probably our favorite fish we saw. It's a juvenile damsel fish and it had very fluorescent blue spots.  The reef and water off of Cozumel was fantastic!
 
After snorkeling we took a taxi back to downtown Cozumel to do more shopping and we ate lunch at Carlos and Charlies.  It was a very festive environment.
 
The following day we split up again. Cody's parents went to Chichen Itza and the rest of us hungout at the house. Then on Thursday his parents and Carson and Marisa went to Rio Secreto while Cody and I and my parents went to a free shipwreck museum in Puerto Aventuras. It was interesting to see the equipment that scuba divers originally used to use and it was so cool to learn of the shipwrecks through the ages that happened off the Yucatan coast.
 
So many ships sank because of the reefs and there were many artifacts that had been brought up on display.
 
Of course more shopping was involved after
 
One of the days we were there, I think Wednesday, all the men went on a deep sea fishing excursion. I really wanted to go, but the waves and rocking boat would not have been good for me. Unfortunately they didn't catch anything, but they had a great time and no one got sea sick. We bought dramamine for the boat rides. Us girls hungout at the house, layed out when the sun was out, went into Akumal for more shopping and had fun together.
And that's it for our Mexico trip. It was a lot of fun and we did Skype with some of the kids almost nightly, but the trip was a bit too relaxing for me. At this point I'd been sitting around for almost 3 weeks and was ready to go for a run on the beach, the boat ride or anything else. I know it's good for me to rest, but sometimes too much drives me stir crazy. Thanks everyone for a great time!

Wednesday, February 15, 2012

Hat hanger

I'll admit it, I have a lot of shoes, and I like them. When I clean my closet out I sometimes think about getting rid of some, but they all go with particular outfits and if I get rid of a pair or two, then I'll regret it later. When we used to live in small apartments and condos, I had one of those over the door shoe holders. I've hung on to it for years and finally decided to pull it out again...but not for shoes.
 Now I am a collector of cute hats and beanies!
It's perfect! It fits all my beanies, scarfs, headbands, etc. Now I don't have to rummage through them all to find the one I want each day. Genius! (BTW, a post on our Mexico vacation should be coming soon!)

Sunday, February 5, 2012

Cole turns 3!

Last week Cole turned 3 years old.  We had just a little party at our house for him with our immediate family because Lisa was instructed by her doctor to avoid large crowds and parties for a while.  So although it was a small gathering, it was still fun and special for Cole.

He has been in love with all things "Angry Birds" lately thanks to his older brother Tucker.  We got him a stuffed doll of the yellow angry bird.  And as you can tell from his facial expressions, he loves it.



We also got him his own Leapster and Leapster games so he doesn't have to battle his older siblings any more to play them.  Again, he approved of the present.

Lisa made a simple cake for him.

He struggled to blow out the candles but had fun anyway.  Oh, and if you're wondering why he doesn't have any pants on, it's because we are trying to potty train him.


Happy birthday little buddy!  We love you.