Friday, March 29, 2013

Tata's on Tax Day

Some may dread April 15th every year....this year, I will not be one of those people!  Thursday I had an appointment with Dr. Fine at Northwestern.  He is my plastic surgeon.  I really didn't know what to expect.  My skin is still a little red where it was radiated and the skin is tight and actually feels tighter now than it really had during radiation.  This mixed with a deadline to have my reconstruction surgery in enough time to have a 28 day wash out period before June 4 to qualify for this trial.  I just wasn't sure I was going to be able to fit in reconstruction and the trial.  So I show up Thursday and really felt the worst news they could give me was that my skin was worse off than I thought and that I was going to require the skin grafting surgery when it came time for reconstruction.  I was not getting my heart set on him giving me a surgery date.  If you have not noticed, things don't always tend to work in my favor.....This could not be more opposite of what actually happened!

Dr. Fine was impressed at how my skin held up during radiation.  I explained my time constraints and after careful review, we both decided that I was ready for reconstruction!  His first available date is Monday, April 15th.  So I will get my new tata's on tax day!  I could not be more thrilled!  The procedure is an out patient surgery.  On my left breast they will go in through my mastectomy scar and remove the expander and put in the implant.  On the right side, they actually go in under the right breast because this skin has been radiated so they can not use the current scar.  In case you are wondering, I have also decided to stay within a normal size range.  Although Dr. Fine feels like I'm ready for surgery, he does not recommend me going with a double E look so I will stay within a normal range for Amber as far as size goes.  If this were an elective surgery, I would have to agree go big or go home, but with the circumstances, I really just want this behind me.  Dr. Fine and I discussed saline versus silicone and he explained to me that he recommends silicone unless I have a phobia of it.  Really?  A phobia of silicone....I don't think so, this girl has one fear these days and that is cancer.  So bring on April 15th and my new tata's.  I have chosen silicone by the way.

After my surgery, he anticipates 3 days of rest and then no restrictions.  The clinical trial requires a little longer.  I will be eligible for the study on or after May 13 (my deadline was June 4).  So I have talked more with the trial coordinator and the plan is to do all my pre-trial blood work and possible scans and heart tests (please start the prayers now) on May 9th.  They are researching what tests I will need to do.  Since I had so many last June, I'm hoping I don't have a laundry list of tests to do because this is just added anxiety and fear and although I feel better than ever, of course I let the fear creep in of "what if".  So prayers can start now if they ever stopped for any of you.  I need a trouble free implant surgery and good clean scans in the next months. 

After the tests, I will be entered into the system for the trial and randomized which will determine which arm of the trial I receive.  I am trying to just not think too far ahead so if you ask, I am not really sure which arm of the study I prefer.  The chemo side would obviously be good because I would feel a little more secure and feel like I have some ammo but then again, I may feel bad, weak, low blood levels, more appointments, etc.  But the other side is diet and exercise.  Do I diet now? Yes.  Do I think I am eating the best that I can? No- I am scared to eat.  So a majority of the time I eat very little if I do not think it is good for me so calorie wise, I don't think I am getting enough and anyone that has seen me can see it, I have lost too much weight!  So getting this arm and being forced to take more time to meet with a nutritionist and being forced to exercise even after putting kids to bed and trying to justify to myself daily that between taking care of the kids and working so hard during the day....this probably is not enough.  I need to get out there and sweat some more.  And I think I need to do this on my own at times so I have an outlet.  So that arm would be great too.  But if I get chemo the diet and exercise is also included.  So maybe just a tiny bit of me hopes I get the chemo arm.  I know I'm sick.  But either way, I can't find a reason not to participate.  There is too big of a risk of the cancer returning and if I do nothing, I'm afraid if the cancer returned I would have regret.  Maybe it will never return, but doing anything possible to stop it from returning sounds a lot better to me!  So the fight will begin again soon for me.  This time the fight is not to kill a tumor, but a fight to find a cure for me and for every other Triple Negative breast cancer victim out there.  So I look forward to the hard work and challenge that is ahead of me. 

The kids and Don are doing great!  We don't have a lot to report.  Justin is on spring break this coming week and doesn't really have much planned.  He is enjoying hanging out with the kids at Tiny Treasures.  Ryan is doing good.  He is still struggling with getting a mouth full of teeth and has recently learned how to use his teeth on people....Not a good thing!  I have no idea where this came from, I don't want the kid that bites!  So hopefully it is just a phase and he outgrows it fast!  But he is trying to talk, he says "go go go", if you ask if he wants a bath he will drop what he is doing and go upstairs and this week starting hugging if one of us asked for a hug.  Everyone needs a hug so this just makes me smile and almost cry.  Just the cutest thing.  We are having the basement finished and the house sided so we have a house of dust these days.  it is rather annoying but hopefully it will end soon.  And lastly, I made another huge step this past week.  I turned in my beautiful Porsche Panamera and we financed a Honda mini van.  Just another step in saying good bye to the best job ever.  It was very difficult because it forced me to realize that what I have known the past 11 years is coming to an end very quickly. 

I hope everyone has a happy Easter and it is spent with wonderful family and or friends.  I will keep you posted with the upcoming surgery and of course, please pray for me and for the family. 



Friday, March 15, 2013

Clinical Trial Update


What a great week!  Whitney was here visiting us and it felt like old times!  We found it hard to believe that she has only been gone for 3 months!  It sure does feel like it has been longer.  It seems like Ryan remembered who she was and of course Justin was just thrilled!  We had Ryan's party last Saturday.  It was great to get to see some family and friends!  For those of you that were there, thank you for sharing in our special day.  For those that couldn't make it or are wondering where your invite was, we kept it to local family and friends, I promise it was not personal:)

This week was fairly uneventful.  Of course as much as I was looking forward to a break from Doctors and hospitals, my mind won't sit still, so I met with a new Oncologist in regards to a clinical trial.  Dr. Hantel is still my primary Oncologist, but he referred me to Dr. Phillips who is with the University of Chicago to see about doing a clinical Trial.  So I met with Dr. Phillips on Thursday. I liked her a lot. Of course opening back up my story to her was difficult.  I immediately had a lump in my throat.  This news is almost a year old, but when you don't have to explain it to someone in months, it was like ripping off a band-aid or having drains removed for anyone that has had drains.  I just hate every detail of cancer!  I want to be able to give the time frame, how I found it, when I was diagnosed, etc. without getting that lump!  I held it together for the most part! 

The study is for Triple Negative breast cancer patients who had residual cancer after chemo and surgery.  There are 2 arms to the trial, which it is a flip of a coin as to which one I get.  The first is Observation, diet and exercise.  The other arm is Chemo, diet and exercise.  I am not quite sure which arm I hope to get....The first you are just observed with scans, log your food intake and work with a nutritionist and are required to work out for so many hours per week.  The second is chemo every 3 weeks for the first 6 months then chemo every 6 weeks for the remainder of the 2 year study with diet and exercise.  Now my first question was, if I get chemo, does that mean I lose my hair for 2 years???  Not that this would make me consider not trying this trial, but it did take my breath away.....2 years?  Well, I guess the chemo does not attack all cells, it is focused more towards blood vessels.  So I would get to keep my hair!  It also does not impact your blood counts (although I heard that with Taxol and ended up struggling to keep my counts up).  This arm also has 2 other chemo drugs that are oral.  One is taken daily and another is taken only 2 times per week.  The biggest side effect they warned me of was it could cause high blood pressure.  No one, including myself, is too concerned with this.  I may have failed to mention, but all during radiation and even at this appointment the other day, my blood pressure is hovering around 90/50's.  I am awake and my ticker is beating but that is low for as busy and stressed as I feel a majority of the time.  They think it is low from my anti-depressant I am on.  Fine with me, I feel fine and haven't passed out!

The study has not been signed off on at this particular hospital so I can not start just yet.  First that has to happen which will probably be within the next couple of weeks.  I have a few things I need to check in to first as well.  One being my reconstruction.  If I get the chemo arm, I would not be able to do reconstruction during this 2 year period.  I meet with plastics in 2 weeks.  Best case scenario, plastics is happy with my skin and they say they can do reconstruction within the month.  If that were to happen (throw me a bone here, I think I deserve this God), then I would get the easy procedure of taking out the expanders and putting in my implants and then could start the study mid-May.  If plastics does not think I'm ready to have my reconstruction, I will need to wait because I have to start the study by June 9th.  The study has to start within 6 months from my mastectomy surgery.  Another thing for me to review is my insurance.  I will be able to keep my work's insurance through December, but after that, I go on Don's.  Certain things will be covered by the trial, but some stuff is billed to insurance.  I need to check to ensure that everything under Don's policy would be covered or as close to covered as possible. So stay tuned!

This coming week should be quiet and uneventful! No appointments.  Here's to hoping this remains the new us!!  At least until I'm ready to start the study and or do the surgery!  It is my terms now cancer.  It isn't up to you!

Love to all!


Friday, March 1, 2013

Good-bye Radiation!

Since I have been slacking lately and I have a quiet house, I thought I was due an update.  Don took Justin to the Blackhawks game (hockey) and Ryan is in bed.  I did some work and now it is time to do an update and then relax.

It is hard to believe but this coming week is my last week of Radiation.  I am burnt pretty bad, but I was complemented on handling it like a trooper!  When you don't know if this is the worst of it, or if the burn could get worse, it is easy to just sit back and enjoy the ride.  My armpit has taken the brunt of this.  It is peeling and irritated which it doesn't help that shirts or my compression sleeve cause rubbing and probably is making it a little worse.  All along the radiation has been shot in 3 different directions.  One to the right armpit area, one aimed straight above me and one aimed from the left.  Today was my last treatments like this.  Next week for 5 days they are called "scar boosters".  This is one shot that is aimed directly on my mastectomy scar. Then Friday I will graduate from another life event that I never expected to go through.

So what is going on in my world??  Actually a lot!  The house is busy.  Justin is learning away in Kindergarten.  He wrote and illustrated his first book for Kindergarten's "Young Authors".  He is taking Chess lessons on Monday nights through the Park District with the transportation provided by Nana Naughton. And is so loving that NASCAR started back up this past Sunday.  He knows every driver and continues to have races with his NASCAR Cars before and after the races, keeping Don and I informed of every last move!

Ryan is going to be ONE on Wednesday.  This brings a tear to my eye.  I feel like this last year as hard as it has been has just flown by!  I do not remember a lot of his "firsts".  I am so sad about this!  I keep thinking  back to last year this time.  We were anxiously awaiting the arrival of Ryan.  He didnt' have a name until we were driving to the hospital.  In fact I had downloaded an app and that you shake your phone and it gives you a name.....Oh the good times!  That was one of our biggest concerns with his arrival.  So funny how that is a problem that I would take in a heart beat compared to what we didn't know at the time was lying ahead of us. I am happy that his birthday this week will also signify the end to my cancer journey.  The journey started on Don and Justin's birthday and will end on Ryan's.  A little Ironic, huh?

The biggest news for our family is we have decided not to relocate to Atlanta with my company in June.  This was probably one of the toughest decisions I have been faced with.  Queue a prayer at this time for me please.  How much more can I take is right!  During my leave of absence for my surgery, I spent a lot of time (I think)  just finding myself.  As I have mentioned in the past, I really feel like I was diagnosed and I dove so deeply into water and just swam and didn't come up for a breath until surgery.  After surgery when I was healing, I was just able to put things into perspective.  That perspective was: I NEED A BREAK AND I NEED TO TAKE CARE OF AMBER.  Still that decision was easy to make while I was at home during the day with the kids at day care and still getting paid, driving my fancy Porsche and running errands by myself.  Then I went back to work and fell in love all over again with my supportive co-workers and my job.  I realize when I am working, I can put aside the daily struggles and just put my heart into my work.  But during this return to work, I was struggling so much too.  This decision was weighing so heavy on me.  Don and I had gone back and forth with so many scenario's.  I wanted to make it work so bad, I am not afraid of changing hospitals, Doctors, day cares or houses.  What I am afraid of is the stress.  I do not think my poor little body can take anymore.  Moving to a new place, getting the family situated and our house here sold and then on top of it working with a new staff, just seemed like it might be what finally causes me to break.  So one Tuesday afternoon I found it within me to talk to Brian (my boss) and let him in on my decision.

I do not have regret because I know that this is the right thing for me and my family right now.  My employer has been wonderful throughout this small little issue and that is what I will always be grateful for.  I do not know that I could have handled the chemo, surgery and radiation with so much ease if I did not have the support that I have at Porsche Financial Services!  Some of my biggest supporters are there.  As we all know, we spend more time with our coworkers then we do with family and I will say that I don't really consider my coworkers as coworkers, I consider them family. It will be a sad day in June when I say good-bye to them.  Thankfully I have the support of all of them on my decision and have been told maybe it is just "See you later", rather than good bye.  I won't count that out.

There are no big plans for me come June 14th  just yet.  I plan to take my summer off.  I want to get to my parents house and Justin wants to get to Whitney's apartment because he just needs to see where she lives.  So some traveling is in store. I also want to spend some time on healing.  I continue to hope and pray that I will remain healthy and follow up appointments are the only reason for me to walk into a Cancer Center again.  And lastly I just want to enjoy my family and get that Disney trip planned.  Hopefully by early fall I will have found what I want to do work-wise and I will be back to working full time, but until then, I just want to slow down and enjoy life more.

This should be a memorable week!  Ryan's birthday is Wednesday and then Whitney arrives on Saturday!  It will be great to see her again and for her to get to spend the week with us and enjoy the kiddies!

I thank you all for checking in and continuing to pray for me.  With radiation coming to an end and me closing the chapter of cancer, I ask that you keep me in your prayers.  I am still very fearful of the unknown, but I feel that I am handling it the best I can.  Prayers are much appreciative.

I have attached a picture that I took when Justin was around 6 months.  I had sent it to my mom at the time and it resurfaced today because she told me that when something happens at her work that is not planned, this picture is attached and sent around to different people.  I feel that the picture sums up how myself and my family feels about cancer.....

Enjoy your weekend!