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!



Friday, October 11, 2013

The New Normal

Oh what a week!  Actually last 2 weeks.  Start with the fun stuff!  Lisa and I had a blast at the color run.  I would suggest this run to anyone if you like to have fun.  It is not competitive and it is a great 1st 5K run/walk!  Of course being with the right people for the run is also important.  If you can't have fun, this is surely not for you!

I saw Dr. Phillips today.  She was impressed at my body's ability to tolerate Xeloda.  I mean I must be the best chemo taker in the universe.  I should not brag because my body may just not have a clue yet what this chemo is doing to it.  But I do not have any of the side effects that they discussed with me 3 weeks ago.  My blood work looked fine.  Although my chest skin does not look much better, it has not gotten worse.  Eventually the Xeloda should cause the redness in the chest area to shrink and hopefully disappear and take the stupid pain with it.  But for now, it does not look any worse and that was enough for her to tell me to come back in 3 weeks.  We discussed my pain and she felt that if I can manage it with Tylenol or Advil that is good.  And again she feels that as the drug takes over the cancer, I should not have as much pain.  Hopefully this is the case soon.

In other news, I am back to the best job on earth....Being a mom!  Yes, that is correct!  I started and have left a job within 3 days!  While the hours and location were wonderful, the people and atmosphere were not.  I knew Porsche would be hard to match, but this was not even close.  Not all of my years at Porsche were rosy either.  I was put through hell there by a nameless person for several years, but I kept my head up and did what I was told and out-lived her and that is when the heavens opened up and I realized wow, working there was great, it was working for someone that was horrible.  Working for this horrible nameless person I hate to admit but I learned so much....I learned how not to treat people.  And with that my friends, that is how I was successful at my previous job at Porsche. Now back to this new job....It was toxic and negative. Had I not made a promise that I would never work that way again and maybe had I not had a dangerous cancer walking around with me, I may of tried to out-live it again.  But life is too short and precious to be scared and miserable at your place of employment. I think I could write a book on productivity in the work place when working with evil.  In my 11 years since college, I really think I could top the cake!  So Thursday morning I woke up and decided that this was not the place for me.

For now, I have decided to explore other avenues that are open to me due to my diagnoses for a source of income.  Hoping that this comes through for me, I plan to use my time wisely and raise my children the best I can, volunteer at the school as often as I am able, go to the local cancer center and volunteer my knowledge and kind heart to someone that needs a pick me up and to just live my life  how I want to live my life.  I could later decide I want to go back to the work force if I choose. Wish me luck on the income side of this so I can make the rest happen.

So this post may sound like it was an easy decision to make to quit the job and to stay home and do this.  It was not.  In fact, part of me feels like I kind of hit rock bottom.  I wish it was due to drinking or something that I could manage to make go away, but it isn't....Although I had made that promise to myself to not work in a negative atmosphere, I struggled with not going back.  See I am a hard worker. I learn something and don't stop.  I strive to do the best to earn recognition for my work even if it isn't monetary because believe me, it isn't always appreciated with money, but that was okay.  I am one of those that kind of looked forward to work on a Monday morning and what the week had in store for me.  I liked the routine of kids up, fed, school, work, home, dinner, bath and bed.  Wake up and do it again.  As sick as it may sound, it was more of a challenge for me last year after I was diagnosed to see how I could handle the day to day with cancer: chemo, kids, work, blood work, etc.  I mean it wasn't what I had dreamt or asked for, but challenge was accepted and I felt that I handled it the best I could and saw people shake their head at my strength and courage.  That was like gas to me, the more people were amazed, the more I tried to take on.  Not until I was home this summer did I realize how tired I was.  That was okay, that got me through my first fight with cancer.

This time after I was diagnosed I was so scared.  Scared because I was not working.  What would keep me busy and my mind off of being sick?  What if the treatments beat me down and I want to take a nap.  I thought being home it will be easy to fall into a trap of tiredness and I could see the cancer consuming my days.  That scared me.  So I jumped into the first thing I found.  After accepting the job and learning around the same time that I could get other income assistance because of my diagnoses, I struggled with what was right.  Was it right to get back to the grind of a routine or was it right to be home and spend time with my kids and concentrate on me.  I was getting mixed opinions from people on this.  Finally I decided that work was best and I jumped in.  As this past Monday approached I was starting to get excited but also scared.  I knew Monday morning this was probably not going to work.  But you know what, it was the normalcy that makes us all comfortable.  The normalcy to say if Amber is working, she must be okay.  She must not be in pain, she must not feel sick.  She is doing well.  I liked that.  The last I want is a sympathetic look.  I want people to accept me as Amber 2 years ago and I want things to be normal.  Well on Thursday morning I let myself live in the true reality.  Things are not normal and I am not okay all the time and that is okay.   I am sad, scared and exhausted a majority of the time.  But rather then giving into these fears and doing the old normal, I have to find the new normal.

I envision my new normal to be making sure that I am fighting cancer the best way possible by staying up to date on trials, drugs and just health, taking care of my family, making someone elses cancer experience easier and helping out at Justin's school.  This list could probably go on and on.  I have to do what I want to do and stop worrying about what others think if I am not being the old Amber.  I am a new person and this is now our life.  I know in my heart this is the right decision for now.  It does not have to be forever, but for now, I need to do this.

So wish me luck on this new journey.  I thank you for the continued prayers.  Can't wait to see a lot of you next weekend.  If you are walking, remember I have rented space at Charlestons Bar and Grill after the walk for lunch and drinks for the Bears game.

Love to all!