Wednesday, November 27, 2013

Thanksgiving

I met with Dr. Phillips yesterday at the end of the day.  I hate Dr. visit days!  I started out in a great mood, who couldn't be!  I'm home with my 2 cuties just playing, watching movies, cuddling, etc.  As I would laugh or do something goofy, my smile would quickly fade as I remembered that I had an appointment today.  My heart was beating in my throat a majority of the day.  I had not noticed much change and my pain was still pretty strong that I feared all day Dr. Phillips would want to do some scans.  Although scans are not a bad thing, that is they aren't bad if you get the results that you want.  But with them comes A LOT of extra anxiety, tears and bad moods.  I thought all day how I was going to try to stall this until after the holidays.  I mean yes, I want to know right away if the treatment isn't working and we need to move on, but to be honest, I do not think I or my family can endure anything more this year.  Even if the cancer has not spread, it is still there and I just don't think I can do it.

Turns out at my appointment Dr. Phillips felt that my lymph node was smaller (I do agree with this) and that the skin looked like it has completely stopped spreading!  What great news!  She explained to Don and I why she felt the skin / chest wall has stopped spreading and I agree after she explained it to us.  If you want a full understanding of this, it will require a visual so call me if you need more detail! HA!  Before she took a look, I explained again to her what the pain feels like.  In case you forget, it feels like my skin is stretched so bad that when I touch it, it is hot, painful and feels like it is burned similiar to a sun burn.Naughton.



My final hypothesis was that if we removed the implant or put in a smaller one (not really wanting to do this, but will for comfort) maybe the skin could breath more.  She first said that wouldn't work and gave me the look like aw you poor thing.  Well after she looked she agreed that my skin is just too tight on the right side.  Her request was to give the chemo a couple more cycles to see if the discomfort and pain subsides and if it does not, would like me to consult with my plastic surgeon.  I have decided to get a head start and meet with him before and just get his opinion.  You can now call me Dr.

That is it on cancer front.  In other news, Don and I went to St. Louis to watch the Bears lose.  It was a great trip.  We went with a group of friends from college.  Although all but 2 of them live near us and we see frequently, it was nice to just get away.  It was also nice for Don and I to get away and breath and kind of sort of act like we are a normal couple without a million and one things going on in our life.

Bears Game
Justin has been off all week for Thanksgiving break.  It is really nice to have him home with me.  Don and I met with his teacher on Monday and he is doing great in school!  Ryan is talking more and more and is so busy!  My goodness!  If you have indoor activity ideas, we will take them!

Play Date with Cousin Paige
My brother and sister in law welcomed a new baby girl - Emma Grace on November 12th.  She shares the day with Don and I as it is our anniversary!  And if that isn't enough, she gets a cool birthday - 11-12-13.  She is a doll and her big sister Paige is doing a great job taking care of her.  It will be fun to have a baby around for the holidays!





















I can not believe tomorrow is Thanksgiving!  This year has flown by.  I will say for the most part, this year is right up there with last year for being pretty crappy.  But with all of the crappiness, we have had a lot of happiness! Wow, I might coin that phrase.  It has been tough, but if you don't look at cancer, it has been pretty cool.  I am thankful for all of my family and friends this year.  That is usually what I say anyways when we go around the table at Thanksgiving and say what we are thankful for, but I can't think of anything else that tops family and friends.  The cards, the gifts, the phone calls, the making strides walk, we appreciate it all and I don't know how to thank each of you personally.  It is so easy to sit and cry and feel sorry for myself and my family, but then at the right moment, the phone rings, an email comes through or recently chocolate covered strawberries.  It is like you all just know when and what I need!  We are so lucky!

Please enjoy your Thanksgiving day with your family!  Make memories, laugh and EAT!!

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!

Amber