Wednesday, October 23, 2013

Making Strides Walk

Thank you to all who walked and donated to the American Cancer Society Making Strides Against Breast cancer walk!  Some may not have heard, but my team raised the most money for this particular walk (approximately $7,500.00)  That is awesome!  I had walkers anywhere from old co-workers, the kids daycare, friends from high school, parent's friends, aunts, uncles, cousins, local friends and people I have not seen since I was a little kid that gave me their Sunday to show their support.  My guests ranged from Nevada, New Jersey, North Carolina, Illinois, Indiana, Nebraska, South Dakota, Tennessee , St. Louis to Georgia.  If I forgot, I am sorry.  This was the reminder I needed that I have support all over!  If I did not personally thank you for coming, I am so sorry!  Not to mention, the other close friends and relatives that are also breast cancer survivors: Christine, Sarah and Aunt Marilyn. So many people and not enough time for everyone!  But please know that my family and I are so grateful and appreciative of the support.  It will give me that extra boost to keep fighting!  Not like I would give up, but you know somedays, it does feel like the odds are against me!

My group of walkers!
My sisters and parents were here for the week and it was great having company.  Justin and Ryan do not see their cousins often enough so spending time with them is precious.  Justin had school but played every night with his cousins.  The rest of us enjoyed the pumpkin patch, movies, walks through the Forrest preserves and just visiting.  My house was rather quiet and depressing Monday afternoon.  What would the week be if we didn't also pass around the flu bug.  Yes, a majority of us got it, but luckily it ran its course fairly quickly.  The latest victims were Don and I.  I am feeling a little better today, but not 100% (whatever that is anyways).

I was asked to start the race by cutting the ribbon
On the cancer front, I am on my week off of Xeloda.  I will start back up on Sunday for 2 weeks straight.  I will see Dr. Phillips next Tuesday for blood work and to do a visual look.  I have noticed the skin part continues to fade, but is still there and I want it gone!  I am told to be patient and to remember it will never be "gone" so just be happy that it is showing signs of improvement and that it is not getting worse.  The pain has subsided some so that has to be good news too, right?  The bad news I received this week is that my tumor tests have come back for the 2 clinical trials that University of Chicago had for Triple Negative Breast Cancer.  Remember one called for the tumor to suppress something and 60% of tumors do.  The other needed to suppress something else and only 10% of tumors do.  Well a smack in the face, mine does not suppress either things that they were looking for.  The good side is we were not forced to make a decision as to whether we stick with Xeloda that seems to be working or do a trial.    The bad side is if Xeloda stops working, which it eventually will, we have 2 less drugs that would work in helping to extend my time.  While we are reminded there are still several drugs they can try, these 2 will not be beneficial to me.  Yes, I have to be different all the time and put myself in situations that are hard to get out of.  I have been that way my whole life so why change now?

Again I scratch my head at this Triple Negative.  My Doctor has explained it to us that helps me understand it a little better.  If the tumor does not suppress a hormone receptor, it is thrown into this Triple Negative category.  There are several sub-types of triple negative.  They just have not figured out all of these sub-types and who should get what given the tumor information.  That is so frustrating to me since I know they will get this figured out eventually, I just hope it is time to be beneficial to me!!  Yes, that may sound a little selfish, but I do.  In the mean time, I want to do whatever I can to help doctors....So I will continue to allow them to test my tumor and if it comes to it, apply for clinical trials to help me or other triple negative patients.


Justin adding my name to the survivor wall 

My smallest supporter - "I wear pink for my hero, my mom"

Kids are doing well.  Justin is loving school and Ryan and I are trying to get into a routine without work.  Having guests here helped and then being sick has held us back.  Hopefully next week we can start a routine of library, museums, gym time and anything else that we can think of.  It is nice to have a lazy day inside, especially with the cold weather approaching, but we have to stay busy!!

We appreciate the continued prayers and will update soon!

Love,

Amber

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