Monday, November 4, 2013

Another Day

An update on my Dr. appointment last Tuesday.  I met with Dr. Phillips last Tuesday.  She was not happy to hear that I am still having pain in the chest area.  Her thoughts are that as the chemo works, the pain should subside.  I think, she did not say, that she is getting concerned that the chemo isn't doing what it is supposed to be doing.  That of course is my brain at work.  I did not ask and she did not tell.  Some appointments I am strong enough to ask the hard questions, Tuesday I could not.  She has asked at every visit if I wanted pain medication and I have always rejected it.  I don't enjoy being in pain what so ever.  In fact, when the pain comes on, it destroys me until the Advil or Tylenol kick in.  I get quiet, I can't really eat, I get irritated easily and if it is at night, I can't sleep.  All of this information made Dr. Phillips prescribe me a low dose pain medicine.  She thinks it will help with just my well being.  I agree with her, but I hate to give up on the over the counter meds.   I feel like going to the stronger stuff is losing a little bit of control of this tough game of cancer.  I know this is not a game, but to me I have to play it somewhat like it is.  Taking more medicine is letting cancer know it has gotten to me.  I hate that!  So I am now taking a pain med at night and during the day I'm sticking to my over the counter meds.  I realized yesterday that I really was not taking Advil during the day.  Interesting....maybe the cancer is getting the point.  Then last night, another pain attack.  Right when it was time to sit down for dinner.  It is just so frustrating.  There could be multiple causes: cancer, nerve damage, nerve pain, lymphadema, etc.  I could go on and on.  I just wish we knew exactly what it was.  Pray that it will go away.  It is no fun!!  It makes my mind wonder to places that I don't like.

I have finally gotten involved with a group that I hope helps me and other young breast cancer survivors.  I am co-organizer for a group called "YSC" - Young survivor coalition -for the south suburbs of Chicago.  If you get a minute, check out their website.  It is for women that were diagnosed with breast cancer in their 40's or younger.  I was drawn to this group from another breast cancer survivor that I started following this summer.  Unfortunately, her journey ended a month ago leaving behind a 6 year old little boy.  She co-organized the group in Champaign IL.  My first meeting will be held on November 20th.  What I like about this is depending on the other women that join, I can plan events that meet all of our needs.  I'm excited for this first meeting so I can understand what the other members needs are.  I am sure I will not be surprised that a majority of us need or want the same things.  So far I have 8 members and it was only opened 2 weeks ago.  If you know a young women who had or has breast cancer, please direct them to this group.  If they aren't in the South suburbs, they can check on the website if there is a group near them.  My goal is to make this a positive place for young women.  If you remember, I attended a support group initially when I was diagnosed.  It was a great group of women, but some meetings I left there more in fear.  The looks on the women's faces when I would say my age or my children's ages.  I knew then I needed to be with women like me. Young, with kids, or no kids, married, or not married.  But going through the same struggles, fears and changes a young women faces with breast cancer.

I am meeting with a young breast cancer survivor, that I was fortunate to meet during radiation, for breakfast later this week who also works for American Cancer Society.  She has a few ideas up her sleeve for discussions for the support group and also ideas of where and how to network this group.  Then on Friday, I am meeting with the clinical trial coordinator at the University of Chicago so she can understand the group and help me network as well.  With the HIPPA laws it is hard for me to do this on my own and fortunately, going to the doctor so often, I have met wonderful people that are ready and willing to help me.  So wish me luck on this fun journey!

Other than the group, I am just trying to stay busy with Ryan.  He is learning so much and is talking up a storm.  I still struggle with if he is getting everything that Justin did with Justin attending day care daily and getting the social skills from being around other small children.  But I will say when he does something new I am so proud, because I know he probably has learned that for me.  As long as it is positive stuff, I am proud to take credit, but if he does or says something bad....I didn't teach him that and I have no idea where he got it from:)  I also enjoy being there for Justin before and after school to work on his homework and read with him.  He is excellent at math and most of you know, that was not my strong point so it is fun!

Although that sounds good, I'm sugar coating it a little....It is also tough for me!  Tough to just find my place, tough to be in pain, tough to realize my life is forever changed!  I can not get through the day without crying.  I try not to look back at what our life was 2 years ago because that time did not include my little Ry guy.  But I look at what we had -health, happiness, good careers, happy worry free Justin.  Just makes me realize how much everyone, including myself, needs to count their blessings.  You never know when or what could happen.  You just have to enjoy life! I am doing my best to do so.  And I have to say always remember that everyone has their story so be kind!  Although my side effects on this drug are minimal - I'm keeping my hair, I'm not pale as a ghost, my blood counts are not in the toilet.  I still have a lot going on with my life.  In fact, this fight is way harder than the last time.  The stakes are higher.  My fight is not to attack a tumor and move on with my life.  my fight is to prevent my cancer from spreading any further in my body.  Prevent it from taking me away from my kids and my family way too soon.  So remember that, not just with me, but for everyone.  Everyone has their own battles and even though some are not noticeable, they have something.  Don't hold grudges, don't be too proud to say you are sorry or you were wrong.  Pick up the phone and call someone to tell them hello, say you love them!  Okay enough of the mushy stuff but hopefully you get the point.

So to end, I please ask that you continue to pray for me and my family.  I need some strength, I need some energy, I need positive thoughts that this chemo is working!  Thank you for those that have helped out these past couple of weeks.

Love always!



  1. Amber,
    As I read your posts, I can definitely relate. Those thoughts cross my mind everyday living with a life-threatening illness called Lupus. I thank you for having the courage to be so transparent. I want you to know your posts really hit home to those who are dealing with illness or even their caretakers. I continue to pray for you and your family. If you ever need to talk to someone near your age, I am a good listener and would be happy to pray for you. I know your new support group is going to be an answered prayer for many young ladies. I'm glad you are creating a safe space to laugh, cry, share your fears and successes with each other. Thank you for taking on that responsibility to lead that group. I know it can't be easy with the low energy levels and range of emotions you go through daily. Way to be strong and courageous! Continue writing and sharing, because you are an inspiration to many! God bless! I'm always a message or call away =).

  2. Amber, I go to church daily. You are my main focus of prayer. It works in many ways. I got 20 years of proof. Keep strong and keep fighting. Jim Gannon

  3. I'm so glad to hear you are hooked up with Jen's group YSC. I knew her from working at Parkland and I know of you from your parents. I will pray for you all and hope that you get lots and lots more fun times with your family and friends. Thank you for sharing your blog.
    Nancy Gaumer