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!!

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

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

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!

Amber

Weekly update

Things are still going fine.  I am on my second week of Xeloda, which means next week is a break week.  So far, still no side effects.  Although I have read that sometimes it is accumulative so the more meds, the more likely they might show up.  I have not noticed a lot of change, but Dr. Phillips did tell me it could take a couple of cycles.  I still have pain on the right side, which is rather annoying, but I have been able to stay on top of it with Tylenol or Advil, just wish there was not any pain!

This past week was a good week.  I accepted a job!  I was in the midst of my job search when this all blew up in my face!  So when I was called for a 2nd interview at a company I used the "you don't have to worry about accepting it until you are offered it" approach.  Well I was offered the job and I have accepted.  They are aware of my previous cancer battle and that I am fighting again.  They understand my family and health comes before them and hopefully it will remain that way.  I have mixed emotions about this.  Part of me thinks getting out and back to a routine is good.  The other part is scared.  This is a new company, new people.  I am ill, whether I look it or not.  Will I have the support like I did at Porsche?  I sure hope so!  So I have one more week off to prepare for this new adventure.  The office is close to home (about 15 miles) and the hours are pretty decent (7-4).  So pray that we all get over this adjustment since it will require early mornings and a more strict night routine then what we are used to.

Well, in case you have not signed up or donated, I wanted to plug the upcoming Making Strides walk!  It is October 20th.  I have one of the largest teams and that makes me so happy!  Remember if you sign up, you can request co-workers, friends and relatives to donate to you or to "Amber's prayer warriors". You do not have to walk to donate.  Seeing the money my team has raised alone makes me feel so loved.  This is not just about me, it is about anyone struggling with a breast cancer diagnoses or who has lost someone to this stupid and ugly disease!  Enjoy my video.  Please note: chemo brain may have won, I spelled niece wrong, I probably shouldn't have pointed it out, but I will:)

Tomorrow is race day!  My bestie Lisa and I are running the Color run in Chicago.  Wish us luck as we run / walk with about 5,000 + other people!  I have heard awesome things about this run so we are excited and have a few tricks up or sleeves to stay entertained!

Have a great weekend!

Love,

Amber

Making Strides Against Breast Cancer

It has been a pretty uneventful week-just the way I like it!  I visited my new Oncologist on Monday at the Silver Cross hospital by my house.  She is with the University of Chicago but sees patients at my hospital so it is very close and easy!  We agreed that I would start Xeloda.  4 pills in the morning and 3 at night.  I will see her every 3 weeks for blood work and every 6 weeks for an appointment to access the skin and lymph node.  Assuming Xeloda is working, there is not a need for a scan for a couple of months.  If we don't see progress with the skin and lymph node size, we will do a scan and move on to something else.  She did say it would take a couple of cycles to see if it is working.  A cycle is 2 weeks of taking the meds and 1 week of rest.  So I'm hoping and praying it is working!  I feel okay, I do have pain in the chest area.  From meeting with doctors, they said it is nerve damage pain and possibly why it feels like it does is due to the cancer trying to bother this area.  The pain feels how it feels when you have a bad sunburn and put clothes on.  Also I have explained it like how it feels when something on your body falls asleep - that tingly feeling.  Also if you haven't gotten it yet, feels like you hit your funny bone.  The pain comes and goes.  It is rather annoying though and painful.  The pills help, but if I don't time them just right (every 8 hours) it takes awhile for it to kick in and sometimes I am taking Tylenol on top of that.  So I'm hoping this goes away as the chemo works.  I don't want pain.

Dr. Phillips also gave me the news that I am considered a stage 4 cancer patient.  In cancer terms, there is no stage 5 so that sounds scary.  This is very scary because stage 4 is considered not-curable - WE WILL SHOW THEM!  I am considered this because anyone that has a recurrence of the same disease that was previously treated is considered stage 4.  I don't think this is fair since it is not in a distant organ.  I told her this and while she sees my point, she said I can't change it.  So it is very scary because if you look at the statistics for a stage 4 breast cancer patient, the outlook is not great.  I cried about this and am still having a hard time accepting it, but I am doing my best to stay positive and remember as of right now, I do not have cancer anywhere else besides a lymph node and chest wall.  This is way more then most of you reading this, but in my opinion, it could be worse.  There are several treatments out there still to try if this one does not work.  Just keep the prayers coming!  I can beat the odds, right??

Justin had a great week at school.  I was asked to come to the school today to be a "mystery reader".  I had to give 5 hints about me and the kids were to guess who the reader was.  Justin was so excited and happy to see me.  He told me he is so lucky to be the first one in class to have their mom read.  That made me so happy!  After reading, the kids could ask me questions.  Some were interesting, but man, first graders are adorable and so innocent.  I would love to spend more time in his class and hope to do so.  Ryan is busy as usual.  He is trying his best to talk.  While I can make out some of it, the other is still gibberish.  He has mastered "Sponge Bob" and when Nana and Papa Garrison were here this week, he did combine 2 words and said "oh Papa".  Those that know my dad can only imagine what he may have done or said to get a response like that!  He wants to be outside from sun up to sun down!  Don is holding down the fort!  Keeping busy at work and doing everything he can to keep the normalcy going at home!

So my subject is Making Strides Against Breast Cancer.  I am doing a walk at the Joliet Speedway on October 20th.  I have started a team called "Amber's Prayer Warriors".  If you go to the site: www.makingstridesagainstbreastcancer.com, the home page will try to locate a walk, a member or team.  I have family and friends flying and driving in for this and I am so happy for this support.  I would love to have a team like I did last year!  If you are free and can join us, please sign up under my team.  It is $25.00 / person.  Kids are welcome and we walk rain or shine!  Won't you please join us?  If you are unable to join in, I would love a donation under my name.  Now more then ever we need money to go towards this ugly disease and what better way to help!  If you ask me right now how to help us, I will say this.  Now some of you I might still hit up for a sitter, or pick up for Justin if something comes up, but this is what I really need right now.  I need a cure for cancer!  Any bit helps!  

So I will close with requesting prayers for me of course and for the family!  We are settled back into a routine with chemo and doing great, but mom and dad, sisters, in-laws and immediate family are all hit by this and need the prayers and support.  It is a living nightmare!

Love to all!

Amber

University of Chicago

Yesterday Don and I met with the triple negative expert, Dr. Nanda, at University of Chicago. She is a nice young lady that seems to know a lot about the disease so that was comforting.  She talked to Don and I about 2 different trials that she thought might work for me.  There are a few more steps for each that need to happen to confirm qualification.  The first trial is not an FDA approved drug, but it has been in a trial phase for melanoma, lung and head and neck cancers and showing good outcome so now they are trying it on triple negative breast cancer.  In order to qualify for this my tumor has to suppress a certain "something" (Sorry, Amber terms!)  She explained that 60% of Triple Negative breast cancers do suppress this.  Also to qualify, I must have a measurable tumor for them use to confirm the treatment is working or not working.  This is an intravenous drug given every 2 weeks and I would need to go to Chicago for the treatment and appointments.  (Not that this is bad, but it is not close to our house, and is a bad neighborhood and is HUGE so I feel like a treatment would take all day rather then the 90 minutes they state it lasts.)  The 2nd trial they need to test my tumor to see if it suppresses "something"  Not the same something as the one above!  Only 10% of Triple Negatives suppress this.  This is a FDA approved drug used for prostate cancer, but is considered a trial since it is not approved currently for breast cancer.  This is an pill that is taken daily.  Both trials would require scans every 2 months to confirm the work of the drugs.

So the next step is they will request from Northwestern my tumor slides.  They will send them off to be tested for the specific "somethings" and then get in touch with me.  This could take a few weeks.  In the mean time, she recommended that I start a chemo drug called Xeloda.  Xeloda is given in a pill form and is taken twice a day.  (4 pills in the morning and 3 at night) I would take this for 2 weeks straight and week 3 is continued a "rest".  on week 3 I would also meet with the doctor for them to view my skin to see if the redness and dots are going away and also for them to feel the lymph node in my collar bone area to confirm it is shrinking.  I would also have scans every 2 months to check to make sure nothing is spreading.  The time frame of taking Xeloda is unknown.  

Dr. Nanda explained to me that we are not trying to prevent my cancer from coming back, we are preventing it from spreading.  This was hard to hear, because last time it was you have 16 rounds of chemo, then surgery and then radiation and you are done.  This time, not so much!  The goal at this point is to find the right drug to stay ahead of the cancer.  The chemo may work and the cancer may disappear, but there is not a way to rid myself for good (it sounds like) of cancer.  This is scary because eventually my body could become resistant to this drug.  She did explain that there are plenty of other drugs to try and we are not at the end of our rope....It is just going to be a race to stay ahead of cancer cells.  I may not be a sprinter, but I will sprint through this and beat cancer.  It will not win this race!

Since I really do not want to drive to the city unless I have to, we agreed that I will see Dr. Nanda's associate, Dr. Phillips, who works for the University of Chicago out of the hospital by my house.  Before starting to Xeloda, I will need to see Dr. Phillips so she can view my skin and get an idea of the size of the lymph node so she has a base line for appointments after stating chemo.  Everyone is working with me to get this appointment scheduled as soon as possible.  So hopefully within the next week I will be starting chemo, but it will not require my veins at this point! Oh and I will not lose my hair either!

Once my tumor testing is back, I will then meet with Dr. Nanda again to decide if I want to stay on the Xeloda (Assuming it is working) or if I go off of that and go on one of the trials.  This is going to be a huge decision.  Do I stay on a drug that is approved and is used daily to kill cancer cells, or do I try a drug that isn't approved but is showing some promising results....So pray again for us.  All I see is opening up a door and the fear that we pick the wrong door....All have their pros and cons and this will be hard, but there is a chance still that my tumor will not have what they are looking for and I won't qualify, or they will decide that my lymph node is not considered "a measurable sized tumor".  In that case, the decision will be made for me.

Lastly let me share with you just how lucky of a day yesterday was. When the hospital called to confirm my appointment for yesterday the nurse I talked to told me to do valet parking when I arrive.  She stated that the first visit they cover the valet since I am a new patient.  In typical Amber fashion I said "wow, free parking, I have cancer but I can park for free!"  I laughed and her not knowing me, laughs a little, but I could tell she really didn't know what to say to that.   Yesterday when meeting with Dr. Nanda's nurse we were discussing whether my tumor was considered measurable or not.  So she said that is good, you might not qualify because your tumor isn't large enough....Again I still have cancer, so I say "well between not having enough cancer and free valet, this is a pretty good damn day!"  My mom and I decided I should play the lottery.  Sorry, this situation is not funny AT ALL, but I have to find the humor in anything I can.  If I can't laugh through this, I don't want to play!

We will keep you posted, until then, prayers please that my body LOVES Xeloda and kills this cancer once and for all.  Prayers for our decisions that we will need to possibly make these next few weeks and finally for my family!  I know this is not about just me.  These decisions impact everyone.  Everyone wants Amber to be here until she is 90.  The weight has to be taken off of all our shoulders and given to God.  I feel that I have 60% done that, the other part still wants to try to control the situation.  I'm slowly realizing though that I can only do so much.