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:)

Amber

August Already

I am having a hard time with knowing that August 1st is tomorrow!  For those in Illinois, you know this has been kind of a cool summer!  So to think it is August seems weird!  From the pictures on my last update, you can tell it has not stopped the fun for the Naughtons!  It is a blessing that this "break" from work happened when it did.  As most of you have told me, I now realize it completely: I NEEDED IT!  I have not only spent quality time with my kids and feel like I have made up for lost time that I was not always the happiest, healthiest and best mommy a year ago.  I have also done what I said I wanted to do: take care of me.  I have enjoyed waking up before the kids and doing yoga in our newly finished basement.  I love and need a walk or run after Don gets home from work and Ryan goes to bed:) And I have enjoyed finding juicing recipes to try.  I am juicing in the morning and make enough for 2 glasses.  So far my favorite juice is Carrot, Kale, turmeric, apple, cucumber and 1/2 of a lemon.  It is refreshing and good!  I do however fear that my nose will turn orange with the amount of carrots I am eating (like what happens to a baby eating too much orange baby food) so feel free to tell me if I do not notice!  

What is next?  Tomorrow we leave for North Carolina to see my parents.  I am thrilled.  I have not been there to visit since before Ryan.  Of course that seems like forever ago, but with our small mishap last summer, they spent a majority of the time here.  So wish me luck and say lots or prayers for me as I fly out tomorrow at 3 with 2 kids.  Justin will do fine, he loves to fly and is old enough to sit and enjoy the ride.  Ryan on the other hand....Yeah, just prayers please.  He has a mind of his own and I will not know until tomorrow at 3 how it will go.  When we return, Justin and I just have 1 full week before school starts so I'm taking ideas of outings in Illinois if anyone has ideas.  I was thinking the city one day and then who knows what else.  And then the week of Labor day: DISNEY!!  He still does not know.  He knows we are going because we have talked about it for a year, but he has no clue that it is right around the corner!!!  So excited about this one.

After our last couple of adventures, my personal goal is to start looking for work.  I have browsed, but I really have not looked hard so I'm a tad scared and it will be weird starting over, but I think it will be time.  I also will need to stop by and say "hello" to Dr. Hantel in September.  I am not sure what that appointment will entail, I just know I need to see him and check in every 4 months.  My parole officer.  I have not noticed any changes in my body or aches and pains so I take that as a good sign.  And since it is only August and I have some great things planned, I really don't need to worry about it just yet!

Lastly, I need to request some prayers for Don's aunt Jody.  Jody wasn't feeling well a few weeks ago and ended up in the hospital.  She was unable to keep any food down so they did some tests and discovered she has stage 4 pancreatic cancer.  The cancer has spread to her liver.  Jody was moved yesterday to a hospice hospital.  I went and talked with Jody at the hospital last week.  She was in good spirits, but knew the prognosis was not good.  Jody has 4 grown children, tons of grandchildren and several in-laws, and nieces and nephews pulling for her.  All anyone wants is for Jody to be healed, but if we can't get that, I ask that Jody finds peace and comfort in knowing she has an wonderful family and they are wonderful because of the way she and Don's Uncle Jack raised their kids and showed love to their extended family.  Please say a prayer for her that she is comfortable and at peace.  I also ask that you pray for her family.  This happened so quickly and they have been forced to make several decisions that nobody wants to ever make for someone.  Please pray that they can find peace and comfort in all of this.  Jody will be missed but she will soon be healed and that is the true reward for everyone.

The pictures are from my sister-in-law Lauren's sister Carrie's wedding on July 20th.  Justin was the ring bearer and that beautiful little girl is my niece Paige.

Love,

Amber

Our Summer So Far

This pretty much sums up our summer so far!  We are having a blast and enjoying every second of our time together!  Feeling great!  I have been doing yoga, running (more like walking with this heat) and started juicing twice a day.  I love it all!  When I'm not caring for the myself or the family, I am sleeping!  This is exhausting!  Here are some pics thank you for checking in on us!  Next up Michigan wedding, North Carolina, back to school and Disney!!  Oh and a job....let me know if anyone has found one for me!  One of those would be nice this Fall too:)

Brookfield Zoo

Cousin Paige and Justin watching the fireworks

Fireworks on the 4th of July at the Lake

First Hair cut

Park Time

Backyard Fun

Pool Time

More pool Time

More Park Time

Head Phones for the race

Boat Rides

Justin's 6th Birthday Party

6th Birthday

One exhausted but happy mommy

T-Ball

More T-Ball

ER Visit

Go Kyle Busch!

A Year Ago Today....

A year ago today I went to work as usual.  I remember it like it was yesterday.  I had a cold and was just annoyed that I was using my lunch break to have my lump in my breast checked.  I left work for lunch, without really telling anyone where I was going.  Why would I tell anyone, I wasn't worried, I was probably going to have my breast drained for all I thought.  I meet with the practitioner and she immediately says she needs to get the Doctor.  Not until she returned and told me I needed a mammogram "TODAY" and gave me a paper with the name of a surgeon, did I start to panic.  Still I was not all that scared.  Since there was a break between my mammogram and that appointment, I decided it wasn't best to return to work and draw attention to this "small little appointment".  Instead I opted for a pedicure, which was probably the best decision, since my world was about to change and pedicures were out of the question due to the risk of infection!  Next I show up for my mammogram.  Still not that worried, then an ultra sound.  Even when the tech was taking forever on my right breast and armpit I was wondering if they would drain the milk duct in the office or if it would require a surgeon like the practitioner had told me.  Finally when things hit me, the Radiologist calls me into the screening room and shows me my scans.  She tells me my entire right breast is covered in a tumor.  She scares me more by telling me it has calcification's which tells her not only is it cancer, but that it has been there for awhile.  The next few minutes, hours, days, weeks, months are a blur! 

A year ago today my life forever changed! When I look back, it was really a pretty fast year! I remember meeting with the surgeon, who I met with again today for a 6 month follow up appointment, last year he told me that it would be a long 9 months.  I remember thinking, man the last 9 months were long with my pregnancy with Ryan, now I have to do this again!  Little did I know being pregnant with Ryan was a cake walk!  Chemo was not easy, but I still smile when Doctors, friends or family asks me how I handled it.  I did great!  I don't want to go back EVER, but it was easy for me!  I mean I was tired, moody, sick, etc.  But I loved the steroids and I never threw up or missed anything because of it.  Surgery, now that was tough.  I will admit I really thought it would be easier to heal and recover from and it was not!  It is tough to go from doing everything to doing nothing!  Radiation....I considered this my morning meditation.  It was relaxing to me to drop the kids of and just lay there topless!  HA!  Not that I meditate topless, but it requires nothing but laying still!  They play any music you like and the techs are awesome!  Again, I would do without it ever again, but that was easy peasy!  Last reconstruction.  Again, not as easy as I thought, but I love my boobs!  I wish we met on other terms, but I love my boobs!

I have blogged this past year about my journey.  This is again nothing I ever thought I would do, but it has been helpful to not only my loved ones but to me.  It is so much easier to write your feelings then express them!  Believe me, if you are one I have turned to throughout this, you probably left thinking "Note to self, don't ask Amber again how she is feeling".  Nah, but I do appreciate anyone brave enough to confront the topic of cancer with me.  I can not say it enough, had I not gone through this, I do not know that I would be as good of a friend as some have been to me through this.  It is difficult to talk to someone going through something so terrible and it takes bravery, compassion, care and probably lots of water proof mascara and Kleenex to do a face to face.  So for that I am thankful that I have wonderful friends and family that talked, cried, laughed and prayed for me!  

I have promised myself to never let cancer sneak up on me again.  I started by making the decision in January to take a break.  To do that, my job decided to leave and go to Atlanta because they knew I wouldn't go on my own terms.....No, but I did use them moving as a way to justify taking some time off and getting paid to have time off.  So thank you Porsche, but I miss it daily!  I also started watching my sugar and fat intake.  I do fairly well with this, except for the past couple of weeks due to again the relocation of Porsche and needing to do one last lunch (and a drink or 2 with a select few) with just about everyone!  But I am slowly getting back on track!  I started yoga, which I still love, but don't get to near enough, especially with the nicer weather.  And lastly I started running.  This too I tied to work.  I started an app (C25K) that is 8 weeks to running a 5K.  I started it when I had 8 weeks left to work.  I am a little behind, but I can say proudly that I am running 2.75 miles without having to stop!  I recommend the app to anyone, it is awesome!  If I can do it, so can you.  I have not ran since high school and during those runs, I am not sure they were productive because it was probably through corn fields running from police during the infamous road parties that we had!  Again, I am kidding, but the app has really helped to get me there and I look forward to running my first 5K with my head shavers aka best friends: Lisa and Meg later this summer.

I am still scared daily and think about cancer way too much, but I feel so good!  I am so proud of myself and hope to continue to doing what I can to stay healthy.  It also feels good to have some extra time with my boys.  Just being off a couple of days I have already realized how much a job gets in the way from precious time with them.  Don, don't worry, I promise I will be searching for a job soon.  But going from work, to home, to dinner to baths to bed is a 3rd job.  To have some more flexibility because work isn't in the way is kind of nice!  Like last night, going outside to play catch with Justin, that warms my heart!  We are making memories!  Not because I'm going anywhere, but I long for the day that he says remember that summer you didn't go to work and we played catch, caught lightening bugs, fed the ducks, etc....I long for that and can't wait to make those memories this summer.  

So good bye cancer!  You are not welcome anymore!  You tried to destroy a year of my life.  As hard as it was, I found the good in it.  It has made me love more, laugh often and live.  Oh and the wonderful friends I have met along the way is amazing!  Some have left me, but are still cheering me on and will always have a place in my heart!

A year ago today!  Hard to believe!

Love,

Amber

Closure

Well, the week has finally arrived!  Another chapter closing in my life.  This is my last week employed with Porsche Financial Services.  You have heard it before, but I could not ask for a better group of people to work with / for.  I knew this before I was ill, but going through a life changing event solidified what a great company it is.  I do not think I made the wrong decision as the timing was not right for us to up-root to Atlanta GA, but I am a mess every time I think of not seeing some of these people on a daily basis.  But as they say "as one door closes another opens". 

This past month has been a bit crazy, confusing, anxious, irritating, etc.  Most know I traveled to New York 2 weeks ago to meet with Dr. Vahdat at the Weill Cornell breast center.  I stumbled across this trial towards the end of April and began speaking with Dr. Vahdat, the trial nurse and the office manager.  It took some time for us to connect, but we did and I went through all the scans required to qualify me for the trial.  When finding out my scans were clean, I sent everything to them and that is where it should have been my first sign that this was not going smoothly.  I sent my documents and it took a week after that for me to finally get someone on the phone.  At that point the trial nurse told me that I needed to consent to the trial within 4 weeks of my last scans.  (That meant by 6/7/13) I was one week down already and you might as well say 2 because the following week that I was talking to her, I had plans to travel to Atlanta for work.  No need to panic, she made an appointment for me to see Dr. Vahdat on 5/28/13.

So that Tuesday, I woke up bright and early and caught my flight to New York.  I cabbed it to the office with plenty of time to spare.  I first met with a medical student who wanted to review my scans.  She asks me about the "spots" located on my liver and lung.  The spot on my liver has been there since at least 2005 because I had a CT scan at that time and this spot showed again in 2012 and now 2013.  The lung spot is small and considered "stable" and is on the right side, which is the side of radiation.  My Doctor and the doctors that read my scans at Edwards state it is anything a healthy person could have on their lung.  Not to mention it was there in 2012 as well.  Anyhow, I explain this all to the student.  Next I meet with Dr. Vahdat.  She asks the same questions as the student.  She tells me in order to consent, she wants the CD's of my CT scan from 2005 and 2012.  I held it together in the office, but was rather annoyed.  I felt if they had read my reports that they requested and had questions, they would have requested these before I traveled to New York.

I book it back to the airport to come home so I don't miss another day of work since I was not consenting on this trip and spend my evening in the airport until finally at midnight they cancelled my flight due to weather in Chicago.  Luckily my dad had points so he was able to get me a room close to the airport.  He booked a room with double beds and told me to make sure I took advantage of both beds....The next morning I concocted a nice story to my aunt that since Dad did that I offered the other bed to a nice man I met at the airport who was selling watches!  HA!  I was a bit delirious and bored at this point.  I get home by 11:30 but I was way too tired to work since I had been up since 4 the morning before.

I came home and Don overnighted the requested CD's Dr. Vahdat's office and they are delivered on 5/30/13.  From there, I sent daily e-mails and made daily phone calls and left messages to inquire that they received the CD's and can you give me as much advance notice of when I need to be back since I will need to make flight arrangements.  All the while I still think, I'm giving them a chance, they aren't used to patients traveling maybe.  It was an oversight.  Last week comes and still no response.  Don got involved and talked to the office manager who tells him that Dr. Vahdat is at a conference, but someone will respond to me that day.  Finally last Wednesday I get an e-mail from the nurse that my CD's are still with Pathology.  I ask if I could get an extension to the 4 week consent period.  The nurse says she will ask Dr. Vahdat and then silence.....Oh and let me tell you, all the while when they would respond by e-mail, I was known as Amber, Ambar and Andrea....

Finally Monday I had had it.  I have questioned from my trip if I really wanted to invest in this.  I would be required to travel once a month to New York for blood tests.  This is not an FDA approved drugs and it does come with some toxicity issues.  If this doctor can't call a patient back to confirm receipt of a CD, will she call me back if I am sick and in Illinois?  Can I trust her to review my monthly blood work?  So when I checked my e-mail on Monday and still didn't have a response, I sent Dr. Vahdat, the nurse and the office manager an e-mail explaining to them how upset I was with the follow up.  I ended my e-mail by letting them know I was not interested.  I explained to them that this was very difficult because this is not a business transaction where I can take my business elsewhere.  This is a trial that could potentially keep me cancer free.  I also let Dr. Vahdat know that I thought by her not responding to my CD's that were sent and several patient inquiries was negligent.   It is a shame it did not work out and even after sending it, I still wasn't sure if this was the right choice, but I was losing sleep, I had that anxious feeling again that what if my doctor missed something.  Who can I trust???  I sent this e-mail and within 15 minutes I had a response from Dr. Vahdat.  She explained to me that my scans were with Pathology still and that the delay was actually caused from my Oncologist not responding to her timely and that she was at an Oncologist seminar (really, every Oncologist was there at McCormick place and I will guarantee McCormick place allowed the use of cell phones, they are doctors for Gods sake).  Anyhow, I didn't argue, I thought I said what I needed to say, move on.  Oh and also my oncologist and I had spoken last week in regards to the spots and he offered to do any test possible to speed this up, so I really don't think he was not responding to her.

To solidify that I made the right decision (you know me, always looking for a sign), I get an e-mail from the office manager at Dr. Vahdat's office yesterday and she apologizes for not meeting my expectations, but the pathology department is unable to open the CD that was sent and they are going to need to send it to the main hospital to view, but this will cost money.  How would they like me to proceed.  So I couldn't help myself, I responded and thanked them for the sign that continuing to work with them was not an option.  Dr. Vahdat flat out lied to me.  She claimed my tests had been with pathology for a week.  Did they try for a week to "open" the CD?  Wow! 

Needless to say, I will not be participating in any clinical trial this summer in New York.  I am open to ideas so if you hear of anything, please let me know as I still am looking for the right thing to do to stay cancer free.  It really is a shame that this happened.  I know I get more out of this then they do, but I can not operate this way.  On top of it, like I said, it was causing anxiety issues because she opened up a concern and then left me hanging.  I mentioned this in the e-mail and I truly mean it :" I hope none of you or a loved one are ever on the other side of cancer".  It is so true, they were wreck less with my information and in my opinion are not taking the trial serious.  Trials are not for everyone, they are time consuming and may be pointless, I would think if a patient volunteers, they would jump on it.  Just sad.

Everything else is GREAT!  Justin graduated Kindergarten and starts T-Ball tomorrow night.  He told me that he is excited for first grade, but doesn't think he wants to go to 2nd grade because he heard the math is challenging....Ryan is talking more and more every day.  He knows where is nose and belly is.  And is obsessed with animals.  They both keep me going!  I'm excited to spend the summer with them.  Disney is planned (Still a surprise so don't mention it if you see them) and we have a trip to North Carolina booked for August as well.  Other then that, we are going to explore Illinois.  If you want us to visit, let us know!

Love,

Amber

Scans

This week has been about as trying as the week I was diagnosed.  I am glad I can get the first set of scans behind me and hope and pray this only gets easier as time goes on.  I think what made it extra difficult was the timing with everything else going on in my life!  My job with Porsche ends on June 14th and as the date gets closer, I hear other co-workers talk about their plans whether that be Atlanta or parting ways with Porsche.  I didn't have plans....My life is seriously minute by minute day by day.  I hate to live it that way, but I had no idea if the scans were going to give me closure to cancer, like they did Thank God, or if I was back to chemo and fighting for my life.  I finally can breath and start to plan my wonderful summer with my family and move forward with this trial in New York and eventually start a job search.  Thank you God!!!

So most know, I am pretty routine and look for signs where ever I go and try to go through the same motions each time to ensure a positive outcome of a previous experience.  So Saturday was my CT scan....My previous CT was done on a Thursday so that was throwing me off.  My last CT I wore Navy shorts and a teal tank top (yes I was a hot mess, I had just been diagnosed and had not slept in days and if you remember, it was one of the hottest days of the year, I remember this)  Since I realize now that outfit was probably not the coolest in my ward robe and it is also not that nice out, I opted for a blue shirt and gray yoga pants.  Maybe it is the blue that keeps my scans clean, right?  Next I drove to the hospital and oddly, I remember where Don and I parked that day last June for my CT so I tried to park in the same location.  I do not recall what floor of the parking garage, but I do know the area so I found the same area and parked.  After that it was a new experience and I reminded myself that this was not last June so some things can not be re-lived.  After my scan I tried to get some information from the tech and as she should, she told me she could not tell me my results.  I left and re-played in my head over and over the rest of the weekend if her words held any meaning one way or the other. 

Monday morning I went back to the hospital, wearing the same blue shirt and gray yoga pants from Saturday (yes, it was washed) I parked in the same spot as Saturday (2nd floor facing West)  and went into the hospital to have my radioactive dye injected for my bone scan.  Again last year this scan was done on a Thursday and this was a Monday, yes, I wrestled with this all weekend.  After the injection they told me I could leave and that I needed to return at 11:30 for the bone scan.  So last year while I waited for my bones to soak up this radioactive matter I ate lunch with Don in the hospital cafeteria and then I went to sit outside because remember my navy shorts and turquoise tank top?  Yeah, I was freezing so I went outside.  Last year I went out to a serenity garden and prayed and prayed and well prayed.  I also read a prayer card given to me from a high school friend who had lost her new born son, Evan.  When I left the garden last year, I realized I was in a serenity garden dedicated to angel babies.  Yes, I still think that was a sign.  So back to this year, after the injection I decided I needed to visit the serenity garden.  Unfortunately the prayer card from my friend was destroyed when the car was totalled in October and this was bothering me, but I still can go out and pray before I go to work for 3 hours.  I walk outside and the garden is fenced off!  I can't enter it because of construction!  I panicked!  What should I do?  I have to go there and pray.  So since I could not get in there, I walked to the other side of the gate which was actually inside the parking garage and stood facing the garden and prayed.  It was super loud with the construction, but I did not care.  I needed to keep my routine.

I come to work and I get a call from the Cancer Center from Maria, she tells me my CT is clean!  I literally was sitting at my desk in a sitting fetal position.  I don't know if you can picture this, but I was sitting in a chair, knees to my chest, hands tucked under each knee (I don't know if I could even sit this way ever again) I was shaking and crying and I tell Maria that I love her and no matter what the other nurses say, she is my favorite.  By the way, I do not know who Maria is, but she just checked off one of my scans.  

At 11:30 I reported back to the hospital for the actual bone scan.  I could not for the life of me find a parking space on the 2nd floor facing West so I went to the 3rd floor and faced west.  Don met me there for support.  Now just a little background, since December my back aches at different times of the day.  Nothing that causes too much pain, but enough for me to notice it.  Of course it has always been in the back of my head, what if this is cancer.  But it was also in my head that I lift a 20+ pound child several times a day, I do yoga, I run (yes run) and try to squeeze in as much cleaning as I can.  Not to mention it could be stress, it could be aging, it could be chemo residual stuck in joints....Several other things that a normal person would consider, but I have thought recently, what if.  When we walked into the Nuclear Med waiting room, the tech Carl came to get me.  Immediately I recognize him!  He was the same tech as last time!  HOORAY!  This has to mean good news, plus last year after my scan he told me "although I am not a Doctor I do not see anything to worry about".   He told me this only after he gave me the technical response that he could not disclose the results to him and I basically looked at him and burst into tears and told him my horrible story.... I have a new born and 4 year old at home, you will tell me my results today!  So he did.  So I lay down on the table and he asks if I have had a bone scan before and I tell him yes, all the while I'm smiling because I think I get my answers today because he told me last year.  So I lay down and the scan goes as usual and after I ask Carl for my results.  He tells me over and over he can not tell me.  I tell him I have never liked Christmas because I don't like surprises, he won't budge.  I tell him I have 2 young children at home that need me....Nothing.  I then start asking him would it take longer if there was something wrong, NOTHING!  Man Carl, I thought we were buds.  Nothing.  So I leave there a little defeated.

Monday night Don and I headed to another hospital location at 9:15 for my brain MRI.  I have never been to this location so I have no routine to follow.  All along I have not been that fearful of the brain MRI because I think to myself if there was something wrong, I would surely know.  My only concern here was that my eye sight is horrible.  It surely couldn't have anything to do with me aging, having a baby, having 16 rounds of chemo.  So we go in to the scan and the tech tells Don that I will be in the scan for about 45 minutes.  Off the tech and I go for the scan.  So I lay on a table and they enclose my head in a cage looking thing.  He tells me to lay there as still as possible and to close my eyes because any sudden movement can cause the test to take longer.  So I lay there and the damn MRI noises start up.  I mentioned this after my breast MRI, but I can not believe there is not a better system than a stupid MRI.  I laid there and said about a million Hail Mary's.  I also realized the noises of the machine sound like the beginning of a Black Eye Peas song!  They imaged me for about 45 minutes and then injected more dye and scanned another 15 minutes.  By the end I was exhausted.  Not only was it almost 11 at night but also because of the noise, I didn't even try to break this tech for answers.  I just wanted to go home and sleep.  

Yesterday I went to work and knew to be expecting a call because the Cancer Center told me Monday they would call after they knew the results.  So knowing I was going to get a phone call, it was stressful.  Finally around 10, a nurse called me and said my bone scan was CLEAN!  I then asked if she had my brain MRI since it was so late so she checked and sure enough CLEAN TOO!! YIPPPEE!!  I went out and celebrated with my staff and I think told everyone I came into contact with. including 2 gentlemen at our office to pick up boxes for us!  Later in the day I received a call from another nurse with the same news.  I told her I had already been notified, but who cares, since it was just a 2nd confirmation that my scans were clean!

Today I met with Dr. Hantel and we went over the trial in New York.  He supports me and the decision to move forward with this so I will call the coordinator in New York tomorrow and set up my first meeting to go out and sign the consent and start the process of sending all of my tests, specimens, scans, etc. to their location to pre-qualify me for the trial.  Once I am approved and in the trial, I will need to travel to New York every other week for appointments until my body reaches the right levels, then I will be expected to travel once a month and eventually every 6 months.  One more test is standing in the way, I have to have DNA extracted so they can study a gene.  I'm making the call tomorrow, but I am hoping my insurance will cover this.  If they don't, I hope it is not that expensive of a test.  I know my initial genetic test was covered, but that was because of my age at diagnoses, I am not sure how the insurance will react since it is for a trial, but we shall see!  It feels good to finally be back in the drivers seat of making decisions with my life!  For the past year I had to take a back seat and do as I was told.  It was very hard for me!  

I appreciate all of the prayers and support this past week.  Now that they are behind me, I feel such a relief!  Thank you all for helping me through them! 

Lastly a quote that showed up at just the right time on Monday when I was at the hospital:

"Surrender to what is
Let go of what was.
Have faith in what will be."

Scans and Prayers Please!

Well a few updates since my last post.  The day after my last post I learned that the trial I was going to participate in was cancelled due to low enrollment.  I was disappointed and a little nervous because I felt like this was my next step.  I pouted around the house for awhile since I was still off due to surgery and then I decided to indulge in a chocolate milk shake.  Most know, I have tried really hard to cut out dairy, sugar and fats from my diet.  I splurge every once in awhile, but I have never really turned to food during stress so this was new to me.  I then got over it because I reminded myself that one arm of the study was just diet and exercise....I can do that on my own, right?  Sure I can....(In the garbage went the more than 1/2 drank milk shake) I was not guaranteed a cure, it is a trial.  I will get through this.  I e-mailed a cancer buddy that I will address later on and asked her if she could offer me some encouragement and I decided move on.  Look for the next best thing.  

Saturday, 2 weeks ago, I spent some time while Ryan was napping and Justin was watching a movie researching some trials and came across one that is out a New York hospital.  The trial is a copper depletion pill that is being offered to breast cancer patients, specifically Triple Negative.  The trial is in a 2nd phase and the point is that this pill brings your copper levels in your body to where they should be.  I guess they tend to be higher when or if you have cancer.  So the trial is looking for candidates that have a high chance of re occurrence (check), triple negative (check) and cancer free (better be check)  So I e-mailed Dr. Hantel and e-mailed the coordinator of the trial to learn more about it.  Basically assuming my scans are clear, I will need to travel to New York one day a week every other week for 2 months.  The point is they are giving you a dosage of the copper depletion pill to get me to a level that is normal for my body.  Once I reach that point, could be earlier or could be later, I will go once a month for a 1 day appointment to have blood draws to ensure I am still at the right level.  This will go on for 2 years.  Count me in!!  This was a good day!

Fast forward to last Wednesday, I get an e-mail from the coordinator of the first trial that is local.  We may have enough enrollment, if you want in, you are in.  Let me know soon.  I then e-mail Dr. Hantel to get some advise.  I wanted his thoughts on the copper trial versus the diet and exercise trial.  I was not expecting him to jump up and down and praise me for finding a cure, but his response was not what I expected.  He basically told me that while the copper trial looks promising, it is a very small trial and that he has been around for awhile and knows that these drugs come about a lot and they never get passed as a method of treatment.  In his opinion, he would not put his family in financial stress by traveling back and forth to New York.....Thank you very much you jerk!  Was my first thought.  I was very confused on what I should do.  I finally just disconnected and thought the answer will come to me.

Next was last Thursday, I spoke above about an e-mail to my cancer buddy.  This is a lovely lady, Jude Borling.  She is Pastor Don (he married Don and I and christened both boys) wife. Pastor Don had reached out to me several times during my cancer journey and asked several times for me to reach out to Jude who had been fighting stage 4 cancer for 3 years but was proving to be winning her battle with diet.  I didn't reach out to her for awhile because I was shy about it, she had her own battle, I don't want to lean on her.  I'll bet being a Pastor's wife, she has to support a lot of people.  But after Christmas, Jude reached out to me.   We met and talked like we had known each other for years.  She was so positive.  We both quickly felt a bond and talked about how each of us were inspiring the other.  We e-mailed one another and kept in touch.  She continued to offer me advise and words of encouragement and I did the same.  Well, she e-mailed me around Easter with the news that her cancer was showing back up:(  She decided to travel to Bulgaria for a mineral that had some positive outcomes.  While she was away, I had e-mailed her a couple of times and did not get a response, never did I think she was struggling.  I was confident she was going to return home and let me know she was cured.  Last Thursday Don called me to inform me that she had passed away.  This was very difficult news for me.  I call Jude my hero.  She was truly giving me the feeling that I could beat the crap out of cancer.  I think what made me sad was I am afraid she was reading my e-mails knowing how much I look up to her and thought she could not bare to tell me that cancer was winning.  I was so sad and let down on Thursday.  How could this happen to her?   To her family?  She is a mommy, her kids need her!  Pastor Don needs her.  I was really bummed, but I know that cancer didn't win, she did!  Her obituary said it best, she fought her battle with dignity.  Yes she did, she was put in my life for a reason.  She helped many people, I am sure of that.  I know I am not the only one that lost a hero last week.  She had a heart of gold! And while she is not here on Earth to be my hero, she will still see me through this.  

So even though I did not get words of encouragement like I had expected from her when I had e-mailed her after the first trial was cancelled,  I now have a realization:  Who is Dr. Hantel to burst my bubble?  I am not putting my family in financial stress to travel to New York.  I am out of a job in June, but fortunate enough to have insurance and a pay check through January.  This is falling into place....If I had a full time job, would I be able to travel to New York every other week for 2 months?  No.  Would I be able to leave my kids to go to New York once a month and work full time without feeling guilty that I am not giving them enough attention?  No.  Do I want to prove Dr. Hantel wrong?  YES!  So guess what, I am ready to do this trial!  I just feel like things are falling into place.  This trial was found on purpose by me.  I get that not every one would be able to travel like this.  But I have the biggest support group: Offers to help with the kids, a best friend that designed t-shirts and that provided us with some extra cushion that we have tossed around what we would do with the money.  Now we know.  I have one hurdle left....I have to have my scans and they have to be clean.

So that leads me to my request.  I have a CT scan on Saturday, Bone scan on Monday morning and a brain MRI (requirement for the trial) on Monday night (9:15pm to be exact)  The results will be with Dr. Hantel when I meet with him next Wednesday at 3:00.  They are scheduled and now I'm going to try to put them out of my mind until Wednesday.  This will be very difficult and I can already tell I'm a little short tempered because let's face it, I should not have to worry about this.  But I do have to and they have to be done so what I ask from anyone, please pray for me.  I need a sense of calmness as I go through the next week and I need to have CLEAN scans.  Please pray for me!  And please pray for the Borling family.  Jude's life will be celebrated tomorrow afternoon and evening.  I know she is at peace and no longer has to try to stay a step ahead of cancer.  She won, but I also know how difficult this is going to be for her family, so please keep them in your prayers.  

Amber