Sunday, July 13, 2008

Holy crap that is long!

and full of crap literally (sorry couldn't pass that up, and yes I might still be in Junior High). My attempt at being thorough and reducing misconception on that last post just ended up being very tedious, and did I say long. Sorry in advance.

Ulcerative Colitis

I figured I had better do some damage control before the rumor mill gets people confused about my diagnosis. I just want to make sure that accurate information is out there. I don't want anyone freaking out or worrying too much, or what have you, so after a lot of thought I figured I had better get it out in the open a little. Anyone heard of Ulcerative Colitis? I hadn't until I found out I had it. And who knows maybe this could get people who have not had colonoscopies done and should a little incentive to GET TESTED! (This is where things may get a little yucky, so If you have a weak stomach or potty talk is just too much info. for you, you may want to stop reading about here.) I had some digestive problems for the last few years, and recently had diarrhea for 2 months with blood and mucus and no end in sight. I'm very slow to go to the doctor, but with our trip coming up, I knew I had to get that resolved. No one should be in Europe with diarrhea. Sorry this is so gross. But it is what it is. I don't want to skimp on the syptoms and risk someone experiencing anything similar any doubt in getting checked out ASAP. What finally convinced me was a girl on Oprah who came on the show to thank her for a show she did with Doctor Oz which convinced her to get checked out after having bloody diarrhea, and it turned out she had colon cancer.
Anyways, got the colonoscopy and they found a few polyps but they were not cancerous. After hearing that I thought I was in the clear, but after my follow up visit my world changed a whole lot. I learned that I had moderate Ulcerative Colitis (moderate means it has affected about half of my colon) with low grade dysplasia. Ulcerative Colitis is a chronic autoimmune disease where for some reason the body attacks it's own tissues. It causes inflammation and ulcers in the lining of the colon, causing it not to work correctly. The low-grade dysplasia means that the cells in the diseased areas are beginning to become abnormal it is not cancerous but can often become cancerous. So they have to watch things very carefully. My doctor was very concerned that dysplasia was present after only approx. 2 years (we're guessing) of having UC. They generally do not expect dysplasia until you have had UC for at least 8 yrs. So due to the speed at which the cells are becoming abnormal they will do another test in 6 mos. to see if it has progressed to high-grade dysplasia at which point they will likely remove my colon, or the portion that is affected. Fortunately, I guess the treatment of UC has changed dramatically in the past 5 years. It used to be that once any dysplasia is discovered at all they would remove your colon due to the cancer risk. Now they will just watch very carefully to stay ahead of abnormal cell development and wait until high-grade dysplasia is detected. It also used to mean that if your entire colon was removed you had to deal with a colostomy bag for the rest of your life. However now about 70% of people have had success with a new procedure that fashions a sort of mini colon out of your lower small intestine meaning after 2 months with a bag allowing things to heal you can have this procedure done, and just have watery bowel movements about 6 times a day. Unpleasant yes, but it definitely beats the bag! So I am very grateful that treatment options have improved so much recently, and I'm grateful that only half of my colon has been affected. The disease starts near the rectum and then progresses upward, there are not patches of the disease here and there. Also on a positive note UC can be cured by removal of the colon granted enough is taken and any areas of cancer have not spread to other organs. The only part that still freaks me out a bit is that my doctor said it is not feasible to test every area of the colon they can only take samples in a grid type pattern, there can still be areas of high-grade dysplasia or cancer in-between the areas they take samples from. He said he sampled and sampled until he was worn out from sampling during my colonoscopy and I remember waking up to a counter top full of 20-30 bottles that I didn't remember being there when I went under. From the research I have done people with UC have very good chances of survival and early cancer detection due to close observation. Typical symptoms of UC are abdominal cramps, headache, fatigue, joint pain, diarrhea, dehydration, excessive weight loss and malnutrition. Unfortunately I have not experienced excessive weight loss. It would be my luck not to have the only symptom that I would actually like to have. It has been pretty overwhelming dealing with such news at 32 (it is typically found between 50-70), but I am truly grateful that things were discovered relatively early (not early in life but early in the disease). They have me on about 4800 mg of Asacol (an anti-inflammatory medication) a day, and a slew of supplements, and I am feeling pretty much back to normal. So I have about 4 mos. before my next colonoscopy to check the dysplasia. Then I will continue to have annual colonoscopies. We are starting to get used to the idea more everyday. It doesn't mean I don't have my moments of WHY ME, but things could always be worse. I was given some pretty incredible promises through one of the most amazing answers to prayer I have ever experienced. I was having a particularly low couple of days and spending way too much time on the computer researching the disease (I think the Lord made my computer get a virus just to make me chill out a bit, there's some scary info out there meant for doctors eyes only)(am I using parenthesis enough by the way? Sorry I'll stop). After a lot of prayer, I kept getting the impression repeatedly that I really needed to read my scriptures. So I finally did and after randomly opening the book and glancing through 2 or 3 verses I just could not believe what I was reading. I have never had the scriptures seem as though what I was reading was written so precisely just for me in a place I never would have expected. In Alma 24:14 it reads: "And the great God has had mercy on us, and made these things known unto us that we might not perish; yea, and he has made thing things known unto us beforehand, because he loveth our souls as well as he loveth our children; therefore, in his mercy he doth visit us by his angels, that the plan of salvation might be made known unto us as well as unto future generations." I just knew that those words were coming directly from the mouth of the Lord to me, and that I will be okay, this was not going to end my life, and take me away from my children. My biggest concern was the thought of not being able to see my kids grow up, or maybe see my grandkids. I hate feeling so down sometimes because I know there are people out there who are way more entitled to tears than I am right now, and they are so strong in the face of things so much scarier! It is just inspiring. Hayley, Travis, Tara, you know who you are. So for now it is mostly the uncertainty of how fast the dysplasia is progressing that freaks me out from time to time. Symptoms are pretty much in check. I do however hold out the hope that low-grade dysplasia can be very difficult to diagnose during an active phase of the disease and it takes very experienced pathologist to determine indefinite to low-grade or high grade dysplasia. Many pathologists differ in their diagnosis of the samples, so maybe I am indefinite! I never wished to be considered indefinite before, and negative would be even better. So in your prayers remember to pray that I will be negative(sorry just trying to find some bit of humor, and double sorry for the parenthesis again)! I am the eternal optimist.

Tuesday, July 8, 2008

Summer Fun!

We were so excited to have Aunt Candice up here from Colorado to play with us. We played in the pool and the slip'n'slide at our house and then continued the water fun at Cherry Hill on Saturday. The kids had a blast. The hardest part was keeping track of all of those kids, who wanted to be a million different directions at once. It was so fun to visit, play, and just have a great time! We just hated seeing the Eborns go home again.

Monday, June 23, 2008

An update at last!

I intended to blog while we were away, but it was ridiculously expensive ($60 and hr.) on the ship, and we were too busy in Venice. Then after arriving home I couldn't justify it until I had finished the laundry, mostly weeded my yard and found the floor in Cai and Cole's room. We left the house in a pretty disgraceful condition. After preparing for girls camp, doing a wedding cake, dealing with my new diagnosis, and getting ready for a long trip, my house took some abuse. Oh, well just my pride I guess.
What a dream come true, being over there was just like a fantasy. It was great to spend some one on one time with Chris. We are so lucky to have such a supportive family that lets us get away together from time to time. Every couple, especially with young children, NEED to get away and reconnect.
Well I can't very well give an update on everything we saw and ever picture we took, so I'll run down the hightlights of each city. Just click on Chris and Courtney's Travels in the sidebar under "sites we like to visit."

Wednesday, June 4, 2008

Bonjourno!






Hello all, we just wanted to quickly post a few things to say hello. We are having a fantastic time. I have finally caught up to Italian time. We had a long layover in New York, so the couple we went with had a sister in New York and she took us to Julliard, the temple, central park and to the Museum of Natural History(the one from Night at the Museum). then we took another red eye to Rome. Which means we literally went two nights without sleep wearing the same clothes. But after one night of sleep I quickly adjusted to the time change. We were a litte nervous when we arrived in Rome because it was pouring rain. We were lucky enough to find an awesome cab driver who we hired out for half the day to drive us around. We saw a ton of stuff, and he was so great. We never would have seen so many things so quickly on our own. Not to mention the rain factor. But the driving in Italy, AHHHHH! I must say that I have NEVER held on so tightly. whipping around streets and cars that he thought were too slow. Honking and cussing in Italian. He was pretty hilarious, but it seemed that this was the style of all Italian drivers. He could get right up to the sites on restricted streets and knew a ton about the history of Rome, the best views, the best restraunts, the best gelato! We had so much fun! Just got into Florence tonight and we'll post more later, we get charged by the minute for internet access. Can I say the dollar SUCKS right now!


le n

Sunday, May 18, 2008

It's Birthday Season!




I haven't posted forever! Our computer got a virus and has severely limited my internet time. Hopefully we'll be back in business today. Anyways May is a busy month for us, with Chris, Cai and Cate all only a week or two apart. So Cai celebrated with friends on Friday and then we celebrated Cate and Cai with Grandma's, Grandpa's, Aunt's, and Uncles on Saturday. Cai has been very into Ben 10 lately so he wanted an omnitrix cake (the watch Ben wears that turns him into different aliens). So his party was all about aliens, his friends were the star commanders and we did a comet toss, a rocket race, a Q&A game with space trivia like red light green light, and of course we had to launch bombs at the aliens (water ballons) and each other of course. He had a great time and got lots of loot.

Saturday we went to Cai's last game (they won!). Then off to Pizza Plus for lunch, Casper's for ice cream, and then home to open presents and have cake, our house looked like a birthday bomb went off. Holy Cow we are going to need an extra room for all the loot. Every year we think now why did we think they needed this extra or that extra so they'll have enough. Grandparents, go crazy, Uncle Gabe (who is on leave from Iraq, horray!) went crazy, and the kids definitely had the time of their lives as a result. Cate got the most darling gift from my mom. Cate is named after 7 Catherines in our lineage, one of whom is my mom. So my mom gave her a cut crystal sugar and cream bowl from Cate's great great Grandma Catherine Hayes King. She also gave her a history of her life, and some old pictures of her and the most heartfelt letter it was really sweet.


Thanks to everyone! The kids may get a little (okay alot) spoiled but they really do appreciate what they have. Mom makes sure to remind them about kids in Africa almost daily. In fact Cai almost went for the idea of having a service party with his friends, there comes a point when we just want to celebrate and not necessarily get more toys, so he was going to have his friends bring supplies for the local animal shelter in lieu of gifts, and then he could use it as a chance to give back to people or animals that really need it(family would still give Cai gifts of course). But at the last minute his 6 year old instincts just weren't ready, and I feel strongly that he should have the choice and be then one to decide. Our neighbor across the street did a service party and gave art supplies to the local family support center and emergency nursery. It was an awesome experience for her. Maybe next year.

Friday, May 2, 2008

Happy Birthday Daddy!


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Happy Birthday Chris! This is it your last birthday you can say you're in your twenties! Thank you so much for all that you do for our family. You are such a great dad and husband. Your kids think the world of you, I am continually having to remind them when daddy is coming home, because they want to wrestle, play games, or just give you a big bear hug. We are so proud of you and all of your accomplishments. I am continually amazed by everything you do and how well you do it. I hope you know your hard work and sacrifices are deeply appreciated and admired. You work so hard for our family to provide us a great life. We love you so much.
I couldn't ask for a better companion, I know I always joke about how I have no idea how we ended up together because we were so different when we first met, but I hope you know I couldn't be happier with my choice of companions. We are truly soul mates, we couldn't be a better fit for each other. Have a great birthday!