Friday, August 30, 2013


Just a quick update!  Dr. Hantel just called me.  Believe me, I think we all had given up a little hope.  I had my PET scan yesterday.  In "stupid / naive terms" this is a radioactive dye that is injected and you then sit for 90 minutes to let it soak in.  After the 90 minutes, you are put through a scan that will then light up if there is cancer growing somewhere.  It also has a CT portion of the scan, that will not show as much, but the Dr. can look at that as well.  My friend Christine is queen of PET's so she could explain this WAY better then I just did!

So what we found out is the PET scan only lit up on my collar bone lymph node.  That is not good, because it does signify a recurrence, but the good news is, it did not light up ANYWHERE ELSE!!  Not even on the chest wall, which was biopsied and confirmed the nightmare that my cancer has returned.  What this means is we have caught this early and there is either not enough or it is too small for the PET to pick it up.  The CT portion of the test shows a couple 2-3 mm nodules on my right lung base. We know that at least one of these nodules was there in May.  Dr. Hantel has explained that they are not big enough to test nor are they big enough to show up on the PET.  This will be a base-line moving forward and a "watch area".  Dr. Hantel has spoken with my surgeon at Northwestern who will present this to the Northwestern Tumor board next week to see if there is a surgery or anything that they think I qualify for.  He has also spoken with the Oncologist, Dr. Phillips, at University of Chicago, where I am switching to so I can be closer to home to see if I qualify for any clinical trials now that I have a recurrence.  So bad news is I have cancer and it is back!  Good news, I trusted my instinct that something was wrong and I caught this bad boy early!!!  So Dr. Hantel's instructions was to go to Disney and let them do their homework so that is exactly what we shall do!

Thank you so much for the prayers but please keep them coming, we have a long road ahead still!

Love to all!


Wednesday, August 28, 2013

Round 2 - Watch out stupid cancer!!

Well, just a week ago, I stated my fear that I was afraid "SOMEDAY" I would have to relive.  Never in my worst nightmares did I think that meant 2 days from my last post!  I have been a little shocked, mad, sad to update so did it through Facebook which a lot of you have probably seen.

So the story goes: 2 weeks ago I decided I had better establish myself with a general doctor.  I am not sick anymore and I really should have one so in the rare case that I come down with something, I can go to someone who knows my history and not to the urgent care because that was our norm.  So I made an appointment for last Monday.  I also had noticed about 2 weeks ago that I had small bumps that looked either like mosquito bites or sun poisoning over and around my right breast (previous cancer breast).  I really thought nothing of the bumps because it was likely they were mosquito bites from being at the lake or sun poisoning since I am rocking a summer tan (not really, but more sun then I have had since I life guarded in high school).  Knowing my skin on that side is sensitive due to radiation, I was not concerned.  So when I went to the general doctor last Monday I had her take a look.  She too said it looked like more of a reaction then anything cancer related and I left with instructions to use a cortisone cream.  I did that through Thursday and noticed it was not getting any better and in fact, I was starting to see a couple of more.  At that point, I called my breast surgeon and they wanted to see me Friday.  Since my surgeon is through Northwestern, I see a resident and then my doctor.  The resident comes in and takes a look and says she believes they are bites and as she is leaving to get the doctor says to me, I don't think you need to worry anything about this being a cancer.  If it were the breast cancer, it would grow on your scar from your mastectomy or your implant surgery scar.  I actually raised my hands and said "YAY" in my happy voice....Some don't know this voice, I only use it when getting good news from Doctors....Totally a fake "yay" until I can get to the car and pump some good tunes and do a happy dance after getting good news.  So next comes Dr. Bethke.  He is always reserve and since a majority of the time I see him, I have been sleeping, I am not good at reading him.  He looks and keeps saying "okay".  He decides he wants to biopsy one to be sure it isn't anything.  He did what is called a punch biopsy.  It did not hurt since I do not have a lot of feeling in the breast region.  He then had me sit up and did the ritual of feeling my neck and collar bone and arm pit region for enlarged lymph nodes.  "Okay, Okay'' was really all I heard and then "take a seat Amber''....Oh here we go.  My response was "when will I learn to not travel alone to these appointments!"  I thought it was bug bites or I would have come prepared with Don!  He told me he was very concerned that my cancer was back due to an enlarged lymph node in my collar bone region.

I leave there super confused and pissed off!  Okay, I am concerned with my health, well-being and future, but BEFORE DISNEY!!!???  Are you kidding me?!  I was so upset.  All of this planning and now I am going back to chemo and if I make it through the chemo, it takes months to re-coop, I can not believe you cancer!  How dare you take my family vacation away!  Since all that know me, know I will not sit back and just wait.  Monday morning I was on the phone with my oncologist Dr. Hantel.  He squeezes me in for 4:30 yesterday.

I meet with Dr. Hantel yesterday and the plan is still somewhat in the air.  What we do know is this is Triple Negative breast cancer showing its ugly face again.  Several times I have explained triple negative has a high chance of recurrence either locally (chest or skin) regionally (lymph nodes) or distantly (metastasised to other organs).  So my cancer has decided to show in my chest wall / skin and hopefully that is it.  I did blood work today and will have my PET scan tomorrow.  The PET will light up if cancer is located anywhere else in my body.  Right now I need strong prayers that this has not traveled any further then a local or more then likely regional (since my collar bone lymph node was enlarged) recurrence.  Dr. Hantel did agree that there was no reason to put off Disney.  He needs to converse with several doctors to come up with the perfect regiment of chemo for me when I return.

So tomorrow I will go through a dreaded scan and we will then leave Monday for Disney and then return for chemo.  We have no idea how long or how often for chemo just yet.  He has given me some drugs that they may include, but no ideas how often or the side effects.  Chemo may be followed by another surgery, but he is not sure.  He explained that cutting out skin is a major surgery to have the cancer hiding and reoccurring again.  So we are not sure this might be a long term battle for me to stay ahead of the cancer.  Hopefully not!  Hopefully it remembers how rude and uninviting I was to it the first time.  It will not stay!  I have 2 kids that need me daily and I refuse to be taken from them.  I will not go down without a fight!  You all know that!  I hate to bring the crazy out but I will!

 I think it was somewhat of an easier blow the 2nd time around.  I was very educated about the likely hood of the return so I kind of was like "aha, this is when you choose to show back up".  So bring on another long and scary fight.  Please walk with us and keep us in your thoughts and prayers!  We have not told Justin yet if you are wondering.  Only because we are not sure to what extent I will have effects.  We will tell him something, we just don't know what yet so pray for that little man.  He is such a caring child, this will be harder for me then hearing the diagnoses myself.

Lots of Love to all!


Wednesday, August 21, 2013

First Grade

What a day!  Justin started first grade today!  Wow is he growing up so fast!  To start the school year with a bang, Justin and I had a date day on Monday.  In the morning he had orientation where we met his teacher Ms. O'Leary, visited his classroom and put away his school supplies.  Next we headed go cart racing.  Justin then told me he wanted to see Planes for a 2nd time, but later changed his mind and decided he wanted to play with our neighbors.  Yesterday Justin was the same ol Justin.  He went to the neighbors to swim and was just enjoying another summer day.  Mommy on the other hand....I had a rough day.  There are a few reasons: 1.  It has been an awesome opportunity to stay home with my kids this summer and just "play".  Seeing that school starts means summer is ending and well, I need to start my job search soon.  And I will probably never have a summer off again.  2.  Justin is growing up so fast.  Laying with him in bed Monday night I had a thought.  Most will say "they grow up in a blink of an eye".  Although that is a true statement, I selfishly want him to grow up.  That means I am further out from diagnoses and closer to the "safety zone" and it also means that if the worst were to happen and my cancer took me away from him and Ryan, It is more I was able to experience with them.  I am in no way rushing time, but I want to soak in every moment I can with my boys and anyone that has been through cancer will agree that the thought is constant.  What if this is the last year I prepare him for school, what if this is the last Christmas, WHAT IF??  It gets old, but no matter what, this is a fear! 3. My third reason for having a sappy day was I read on a Triple Negative site that I follow about one of the founders who lost her battle with cancer over the weekend.  This saddened me and also made me angry.  So of course in typical Amber fashion, I researched to see how many differences I could point out to prove that this doesn't mean Amber will relapse...."I'll bet she didn't have a mastectomy"....She did.  "I'll bet hers was further progressed at her initial diagnoses"....It wasn't.  Lastly "I'll bet she didn't diet and exercise"....Incorrect again, in fact she ran a marathon 10 months after chemo.....So this left me too with that fear and annoyance of if she can't beat it, how the heck can I!  I know and just needed to remind myself that this is "Amber's story" not hers.  Only the man upstairs knows how it will play out! Let it go, I am doing everything I can to balance my life between health, fitness and happiness.  I slip and cheat on my diet at times, I don't work out every day, but that isn't a sin.  That is human!  I still have to be a human....I can't be a machine, right?  I have to enjoy my time on earth!!  

I texted back and forth with my cancer buddy Christine yesterday.  Funny that she was having somewhat of the same thoughts as me yesterday!  I told you cancer peeps think alike.  I do think this was a sign because I was really feeling sorry for myself and then the text came in from her.   just talking to her and knowing I'm not alone, helped perk me up!  As of right now, I am healthy!  I have remembered that all summer!  Yesterday I somehow let fear take over.  I am blaming it on Justin's start of school.  And her and I reminded each other that  Others may not have cherished their children's first day of school like we do.  They don't think this could be their last, but in actuality, it unfortunately could be. But because of our past, we are forced to think about death more then others.  Today I have been fine, so please don't call in the Doctors to take me to a padded cell.  I promise I am okay!  

Ryan and I kept busy today and played a lot.  He is roaming looking for Justin and so am I.  I keep looking at the clock to see if it is time to get him.  I can not wait to hear about his day.  Last night he told me he was worried he would not have friends since a majority of his daycare friends will be at a different school.  I reminded him that he is such a nice, funny boy that he will not have any problems.  I also told him how it was around first grade that I met my friends Megan and Lisa.  He knows how close we still are and that brightened him up.  I am lucky that I have great friends and can give him real examples to take his fears away!  I mean when he tells me he is afraid of monsters under the bed.  I sometimes am too afraid to look for him because I have the same fear, but last night I could fix his fear!  This made me so happy!

2 more weeks until Disney!!!  We have decided we will take a limo to the airport and in the limo is when we will tell Justin where we are going!  If we can keep it in that long!!  As it gets closer, I am getting more and more excited! I think the plans are all in place, we just need to get there. 

I hope everyone has a wonderful school year with their children!  Remember to enjoy all of it because they grow up too fast:)