Saturday, September 28, 2013

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

video

Friday, September 20, 2013

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

Thursday, September 12, 2013

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.  

Sunday, September 8, 2013

Disney Magic

We are home!  Disney was magical and just what we needed!  There are so many behind the scene people that helped us with this vacation and helped make our dreams come true.  Whether it was money, helpful advise or words of kindness to help us enjoy this time as a family even with the recurrence of cancer trying to come in at the most inconvenient time to try to destroy our time!  We had a blast and could not be more happy!  So thank you!

We left for Disney on Monday.  Most of you know we were going the surprise route with Justin.  Since the trip did go up in the air these past 2 weeks, I am so glad we didn't decide to tell him about this trip.  We really didn't know for sure that it was a go until the Friday before we were leaving.  So Monday morning we woke the boys up and I put them in Disney t-shirts.  While we waited for our limo to pick us up, Justin watched the Nascar race that we DVR'd from the night before.  Not the entire race, but the last 10 laps.  Luck would have it, his man Kyle Busch won!  So while he watched, Don was busy strapping Ryan's car seat in the limo and loading the luggage.   Once we got outside and he sees the limo, he thinks that is the surprise and thinks it is super cool.  We get in and tell him "WE ARE GOING TO DISNEY".  He was excited and happy, but Don and I decided he probably didn't know exactly what that meant since he had only heard about it.  So good surprise, but not exactly as I dreamt, but that was okay.

From Animal Kingdom, Magic Kingdom, Hollywood Studios, swimming, breakfast with Mickey to Nascar, we did so much and had a blast.  This trip was exactly what we needed.  Let me tell you that being at Disney in the hot weather and walking as much as we did, it was hard to think that I have a serious cancer.  There were a few times I would think they must be wrong.  I am pushing stroller with sweat running down my face, walking miles on end, fighting a one year old to get in a stroller and  enjoying the joys and laughter of my children....No way in hell do I have cancer again.  Oh how I wish they were wrong and to put it out there, I did make several wishes at Disney that they were wrong.  But we know the news was received, so I also just made several wishes that this fight would be an easy fight and that it is easy to get through and it is just another "speed bump" in our life.

To be honest, I did not think of cancer much on our trip.  We kept things as normal as possible and just lived our life like cancer did not exist.  I know we can't ignore the huge elephant in the room forever, but I just wanted to be like the other families there.  I did think a lot when people watching: what is their story, why are they here, has the mom in that family ever cried as much as I have the past year?  Have they ever received devastating news?  Does that dad stay up late worrying about losing his wife?  Some families looked too damn happy to have anything like terrifying cancer in their lives, but I would like to think if people were people watching us, they would have thought the same.... They are just a hot, happy family from Illinois taking their kids to Disney for the first time.  I wanted that normalcy.  I wanted to pretend or imagine our life like it was now, but without cancer!  Is is easy to do at a place like Disney! In no way was I passing judgment in my people watching, there were plenty of families I saw that were not able to disguise their fears and sadness like we could.  People with a sick family member or a child that was ill.  It did make me realize we are not alone.  And even though that "one" family was happy, they might have a mother, daughter, sister, brother, father, aunt or uncle going through something. We all have our own story and our own battles.

Friday my magical experience started coming to an end.  That was when I started receiving e-mails and phone calls.  Confirming appointments, letting me know my next steps, etc.  We are still waiting to hear from Northwestern on what their tumor board has to say.  We have heard from my oncologist who has spoken with a Doctor at the University of Chicago in regards to a clinical trial for Triple Negative recurrence.  I am getting all of my records, path reports and labs sent to them so I can get in with the doctor there this week to discuss the trial and what I will need to do.  Some have asked me why I am choosing a trial.  Well, from meeting with my oncologist last week, there is not a set regiment for a recurrence.  What they do know is since I had a recurrence within the first year of my original diagnoses, they know I can not do the same chemo drugs as I did before.  This is because obviously those drugs did not do the trick to rid me of cancer.  So we are on to bigger and better things to kick cancers butt!  So the trial will be a chemotherapy, but the drugs of choice, I do not know just yet.  I will continue to learn more about our plans this coming week.  I am ready to get the show on the road. I know my cancer probably did not choose to vacation last week so it is time to get moving!

I will post more when I know more this week! I will post some pictures later, Justin has kidnapped my phone.

Love,

Amber