October 2, 2011 - Miscellaneous Thoughts

Some miscellaneous thoughts today.  I don't write as often as I did right after my diagnosis because I'm simply not feeling well.  Here goes...

Today is Sunday, October 2, 2011.  It is LIVESTRONG day.  The fifteenth anniversary of Lance Armstrong's cancer diagnosis.  I'll be wearing my yellow LIVESTRONG t-shirt today.  He is an amazing advocate for cancer research, care, advocacy, and so much more.  I contacted the Lance Armstrong Foundation and an advocate contacted me personally to speak about my diagnosis, and provided me with resources.  Thank you, Lance and LAF.

As I write this, I'm just turning on football and am happy to see all of the coaches, referees, football players, cheerleaders, and fans wearing pink to acknowledge Breast Cancer Awareness Month.  It's the 25th anniversary of National Breast Cancer Awareness Month.  I love it.  Yesterday, at the Idaho State University homecoming game there were even ISU players with hot pink gear on.  It was awesome.  ISU lost, but put up a great fight.  It was exciting, great to be in public, and I had a great time with Bonnie and Essy!  

Also remember it's Domestic Violence Awareness month.  Here is a great article about breast cancer and domestic violence awareness month. Awareness is Strength: Breast Cancer and Domestic Violence  Just for you, Sarah.  So proud of the work you and your staff do for southeastern Idaho victims of Domestic Violence.  If you are in SE Idaho and needs services related to domestic violence, you can contact Family Services Alliance.  

So, I had a rough week.  I was only able to work 10 hours.  That is upsetting to me.  My major complaints are bone pain (mainly in my pelvic bones and OUCH), the dreaded muscle spasms in my back, and FATIGUE.  One day after being at work for two hours, I collapsed in my kitchen after hauling in a few bags and my purse from my car.  Not the way I'm used to my body reacting.   I know it won't be like this for long, but it is still frustrating nonetheless.  Tuesday...chemo...anxiety about it already.  It is my first Taxol treatment.  It has to be infused very slowly in order to avoid adverse reactions.  

But, on to some good things that happened this week.  Some good, some bad.  The good first!  Most importantly, they didn't have anything to do with cancer!  

1. I was contacted by Michael's unit in Utah.  They are nominating me to go to Washington, D.C. to speak at the Congressional Military Family Caucus Summit to speak about my husbands injury and the difficulties we've encountered navigating his care.  If I do somehow get the nomination, I would go to D.C. at the end of this month and be speaking to members of Congress and high ranking officials from the Pentagon.  Wow! It would be on my non-chemo week or I wouldn't consider it.  We'll see.  I hope to find out soon if I'm going or not. 
2. I am a contributing author to Physician Practice Management, 2nd Edition, Dr. Lawrence L. Woper, and I was contacted by the publisher this week.  I worked on a chapter about Disaster Preparedness and am the lead author of the chapter with a group of people from around the country.  It is set to be published in May 2012.  They were requesting my bio for the book.  Too cool. 
3. I went to see my daughter perform in a halftime performance called "Extravaganza."  It is done every year by junior and high school students to acknowledge our nation's veterans.  It was AWESOME.
4. I went to ISU's homecoming parade and game.  I got to see Conor perform in the marching band for the first time.  Today is the day after and I'm exhausted - but it was worth it.  
5. Olivia performed in Utah at a marching band competition and they took 2nd place.  My Dad and Ellen went and supported her and Dad took photos!  Can't wait to see them. 
6. Michael is coming home soon!!!  I thought he would be home next week, but I've decided it will likely be the next week. Things related to his discharge typically take longer than I want.
1. Unfortunately, Michael was diagnosed with what I think is likely considered severe sleep apnea.  When on his back he stopped breathing 57 times in an hour for more than 10 seconds each time.  That's almost once a minute.  He will be fitted this week for a C-Pap machine.  He's upset about it, but I think it will help him a great deal.  Perhaps his cataplexy will go away.
2. Equally disappointing, he went to UCLA and met with the neurosurgeon.  He said he does believe Michael continues to have a CSF (cerebrospinal fluid) leak, based on his signs and symptoms (PAIN).  But, he doesn't want to perform another major brain surgery at this point.  He wants to wait until he leaks more fluid.  We were hoping for a surgery to perform a miracle for him. 
7. Michael is coming home.  I know, I already said that, but I'm so excited about it.  I haven't seen him since my breast cancer diagnosis.  I've missed him so much.  I'm thrilled he'll be here to make some of Conor and Olivia's performances.  He didn't see any of Olivia's performances last year and she was devastated. 

I'm heading to see the movie 50/50 today.  Looking forward to it.  I have something in common with it.  The oncologist said without chemo and radiation, my chances were 50/50 as well.  It's getting great reviews.  I'll let you know my thoughts on it later!