Wednesday, June 19, 2013

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!



Wednesday, June 12, 2013


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!