Countdown to Cleveland

Happy New Year to all! 2009 ended very well for me, as the last two days of the year were very good and I nearly felt normal! I took full advantage, meeting a friend at Olive Garden, eating more than my share at the New Years Eve party, even playing the Wii a little as well! Yes, I paid for it the next day, but it was glorious bliss to feel and act normal for a few days!!! I am clinging to those memories now, as yesterday and today have been about as bad as it can get, with my stomach and breathing tag-teaming me...and I think they might be winning.
Next Tuesday, my mom and I will be heading to Cleveland for my two appointments at the Cleveland Clinic on Wednesday. As I prepare for that appointment, I've been collecting papers from each of the doctors I've seen so far (a daunting task, to say the least!). Well, when the papers from my pulmonologist at the IU Med. Center arrived, along came the results from my stress test back in April and as I was reading them, I was surprised to learn that my maximum oxygen uptake was much much lower than it should have been. It went on to talk about that in more detail and how I have a high HR/VO2, and there might be an abnormality in my oxygen transport mechanism. Now, that really doesn't mean much of anything to me, but I know that none of my doctors in town have that piece of information, and it sure sounds important to me. I am hoping that it might be the missing link to solving this crazy mystery!
While we are there in Cleveland, we will be meeting up with our friends and small group leaders, Troy and Alicia. For those who are newer to this blog, Troy (27 years) is battling stage III colorectal cancer and he is having major surgery this Friday at the Cleveland Clinic. Surgeons will be removing all of his colon, several lymph nodes and possibly part of his liver (looked suspicious on the PET scan so they will examine it). Please join us in lifting this family up in prayer this week; pray for peace as they prepare, safe travels, a successful surgery, a smooth recovery, and that Alicia does not go into labor while they are there (8 months pregnant with their second son). If you are interested in sending them a card or a meal, let me know and I will get you their information.
As for the rest of our great family, Katie is back to school today and Ryan is already missing her. He, however, slept in until nearly 9AM, which was great! He will go back tomorrow, which can't come soon enough. His little body needs to run and play! Scott doesn't go back until next week, so we are still enjoying his time at home. He is taking 16 hours, all in his major, this semester in an attempt to get done as quickly as possible. I'm confident that he will do fine, but he is nervous about the heavy course load.

Christmas

It feels like forever since I've blogged! Our family had a great Christmas this year. The kids were at each other a lot earlier last week, so I wasn't sure how we would all survive (especially knowing that Santa wasn't bringing them the Wii and Nintendo DS they wanted). After a little chat about loving each other, the rest of the week went smoother and they loved their presents! No complaints at all that they didn't get the high-dollar presents they asked for. My stomach even cooperated for a few days, which I was very thankful for! The pain came back yesterday as we were leaving to visit relatives, but the first day is usually milder and that was the case this time as well. Today is a pretty bad day all the way around, health-wise, so I spent most of the day in bed and the rest of it on the couch. In two weeks, my mom will take me to Cleveland and in the mean time I have tons of paperwork to organize from the 21 doctors I have seen so far. Speaking of my mom, each year she gives us a Bible verse to encourage us or that is relevant to our lives at that point in time. For instance, my verse last year was Zephaniah 3:16b-17 "Fear not, O Zion, be not discouraged! The LORD, your God, is in your midst, a mighty savior; He will rejoice over you with gladness, and renew you in his love, He will sing joyfully because of you." That verse has brought me such comfort, just thinking that God is strong enough to handle any situation I find myself in.

I love my verse for 2010. It is Psalm 109:27 "Let them know it is in your hands, that you, Oh Lord, have done it!" Now, if it were up to me, the "it" would be a complete healing and I'd be able to do all of the things I love once again. I've learned enough over the last few years to know that I'm not the one that makes those decisions, however, so I don't know what "it" is. Perhaps "it" means my children will become compassionate adults because they have walked through this illness with me, or perhaps "it" means someone will have a deeper relationship with Christ. Possibly, "it" will mean something else, but what I do know is that God is doing something amazing through this situation and I'm excited about that!

Since Scott and the kids are home this week, I won't be blogging as much (sorry, but I'd rather spend my time with them!), so in case I don't write again this year, "Happy New Year!" I will pick up again next week, unless something major happens before then. Talk to you in 2010!

More Good News

What a week! Scott wrapped up finals yesterday, my parents started moving into their new house (only 12 minutes away), I was able to schedule an appointment with a cardiac EP at the Cleveland Clinic for the same day (1/13) and today we found out I am approved for social security disability. Can you believe it? I sure can't. We are still fighting the short-term disability company, so we thought for sure we were in for a long ordeal. We've all heard many many stories of people fighting S.S. for years to get their claim approved, too. Since I have long-term disability coverage through work, this won't affect our income at all, but it could be a major factor if I'm not able to return to work after being off for two years. At that point, I will no longer have a teaching position and will lose my insurance and my pension. Since Scott will still have one more semester of school at that point, that would be a very big deal to have no insurance. Of course, we are still hoping/planning that I will be better long before we hit the two year mark and I will be able to go back to teaching, but since the one-year anniversary is not that far away, we do have to think about such things. What a relief to know that God already has all of that worked out for us!

Cleveland Clinic

We finally heard from Dr. Barbish's office today and my appointment at the Cleveland Clinic is January 13th at 10:30! I am very pleased that we get to go that soon. I had no idea how long it would take to get in there. We also got the biopsy results back and they were normal, yea! He also prescribed a new medicine to control my stomach, which helps a little bit. While I was looking up Dr. Su (the woman I will see in Cleveland), I also discovered a Dr. Detnat-Tarazi, who specializes in orthostatic hypotension and fatigue. Jackpot! I am going to see if we can meet with her while we are there. Speaking of "we:" if you think of it, please pray for the logistics of this Cleveland appointment. I cannot drive myself that far, so I will need someone to go with me. Scott is taking a heavier than usual class load next semester, so I'm not sure if he will be able to go with me, plus we will need to stay over at least one night (probably two) because of the long drive. That probably means babysitter(s) for the kids at some point as well as figuring out who can take off of work long enough to go with me. I'm not a very detail-oriented person, so all of this is a little overwhelming for me. Other than that, Scott is just about done with school for the semester (two finals tomorrow) and the kids are having tons of fun at school this week as they gear up for Christmas break. It is so amazing to see Christmas through their eyes!

Conflicting reports

I don't remember where the last post left off, but my endoscopy was bumped up to this Tuesday instead of next Tuesday because of the rapid weight loss. It showed food still in my stomach after 13 hours of fasting, so my GI ordered a stomach study where I ate radioactive oatmeal. That test was yesterday, and it showed my food moving through my stomach at a normal rate. In other words, we have completely conflicting reports. Dr. Barbish is at a complete loss, and recommended that I go to the IU Med Center. Since we will be asking for a referral to Cleveland Clinic for the fatigue/chest pressure/whatever-else-has-been-going-on-since-February next week at the internist, we asked if we could go there instead. They said absolutely, and will be calling tomorrow to schedule the appointment. In the meantime, he wants me to drink something like Boost or Ensure to slow down the weight loss. Lucky for me, the Floor's just gave me a whole case that Troy won't drink because he thinks it is "too vitamin-y" tasting. Thanks, Troy and Alicia! I am having a hard time staying hydrated, though, as even water is still very painful. I am so thankful for the friends and family members who have stepped in to help this week (some at the very last minute!) with food, prep for Ryan's birthday, babysitting, and helping me mentally think things through. I realize that I'm getting older and all, but checking to make sure I have clothes on as I drive to pick up Ryan from preschool is not usually something I have to think about! Yet, that is how scattered and disjointed my thinking is some days. We have so very much to be thankful for this week, including a special little boy's 5th birthday tomorrow!

Endoscopy

My MRCP from last week came back fine, and the pain continues to get worse. On Friday, Dr. Barbish called in an Rx that is a combo of Mylanta and Lidocaine to numb my stomach so that I can eat and drink a little. It feels sort of strange, since it numbs my mouth and throat too, but it works (a little). Unfortunately, I am losing a pound/ pound and a half a day even with the medication, so my endoscopy that was scheduled for December 15 has been moved up to tomorrow morning. I am so tired and weak, please pray that the doctor who does it (Dr. Barbish is out of the office this week) finds something so we can move towards healing. I'm all for losing a few pounds, but this sure isn't how I'd like to do it! I also see my new neurologist this afternoon and go back to the internist next week. Being sick has become a full-time job!

Also, Troy and Alicia Floor are travelling to Cleveland Clinic this week for his appointment before his surgery next month. Please pray for safe travels and that the appointment goes well. Troy had a blood clot in his neck last week and spent the week in the hospital. They were mentioned in Ron William's sermon "God is still... God." It was an amazing and powerful sermon that everyone should hear. I highly recommend that you podcast it from ITunes or from the website (www.pathwaycommunity.org). Sometimes it takes a few days to get to the website, but it will be worth the wait!

Heigh-Ho, Heigh-Ho, It's Off to the GI's I go...

The sharp stomach pain is back with a vengeance this week, so today I went to my GI, Dr. Barbish. He ordered an MRI of my pancreas, pancreatic ducts, etc (the test is called an MCRP? MRCP? something like that) which I had today and an endoscopy which will be on the 15th. It is so painful that I can barely eat or drink anything (even water is very very painful), but I make myself do it anyway so that I don't have to do to the hospital. The magic number seems to be four pounds. If I lose more than four pounds in a week, I think they will make me go there, so my goal is to stay above that magic number (or lie, which at this point I might be willing to do...after all, they really can't do much at the hospital to help me at this point). Please pray that the pain goes away and/or we find the source. Gotta run, Ryan is just ITCHING to play on starfall.com!
PS Swagbucks fans, don't forget that gift cards are on sale now through the end of the year, new one each day!! Whoo hoo!