Sunday, December 30, 2012

See Ya 2012!

Merry belated Christmas and Early New Years!  This has been a fun-filled week.  My entire family arrived on Christmas Eve and our house has not been quiet since!  It is really great to see Justin play with his cousins that he does not see near enough.  How Jess and I ended up with all boys is beyond me!  They have played with just about everything imaginable in this house!  From Santa gifts to toys that Justin forgot he had!  It has been so fun!  Even little Ryan is enjoying himself and trying to fit in with the big boys!  When he isn't fitting in, there has always been a helping hand to take him to cuddle!

Yesterday Mom, Jess and Whitney spent the day in our kitchen preparing meals for Don and I to freeze and just pop in the oven.  This will be great especially after I return to work and am tired from radiation.   This will be a huge help for us.  They did this while the dads, Papa's and I took the older kids to bowl.  Ryan and my nephew Tyson stayed back.  Ryan because he has not learned to perfect his bowling game and Tyson because he has caught some sort of a flu bug.  

Mom and Dad left early this morning:(  They are going to try to drive straight through.  Jess and her family will leave tomorrow afternoon and then Whitney will ring in the New Year with us and leave on Wednesday morning:(  It will be one sad week for us Naughton's!  I always hate when family leaves and the house is quiet, but this time will be so much different.  My family has done so much to help me through this and I can't say thank you enough to them because I am sick of crying and it makes me cry to say it out loud.  And if I cry, they cry and I don't want to cry today or tomorrow so I will write it: THANK YOU AND I LOVE YOU ALL VERY MUCH!!  (queue the crying)

As far as how I'm doing, well, things are great!  It is easy to block out cancer when you are busy watching your family enjoy themselves!  But in all seriousness, I am doing okay.  I am sleeping a little better and my anxiety seems in control.  It probably has to do with the meds, but I am fine with that!  Healing is going great!  I returned to the Plastic surgeon on Friday for what I was hoping to be my first expansion.  Unfortunately that did not happen.  But the Dr. was satisfied with my healing.  It turns out a couple of weeks ago when they thought the skin on the right breast was dying, that was not the case.  When the Dr. looked at it on Friday, she confirmed it was blood stuck between the stitches and the glue they put on.  ***SKIP IF YOU ARE QUEASY**** so she had me lay down and she picked off the glue.  They are correct when they say you lose all feeling in your chest area, because I could not feel a thing, but I can imagine this would really hurt!  Whitney watched and said it looked a lot better.  It bled some which made the Dr. happy because that means it has good blood supply.  She put strips on it and I have not been able to get them off just yet so I have not seen how much better it looks.  I am scheduled for this coming Friday to do a double expansion if I can stand it and then radiation planning will be the following Monday.  I am hoping I can stand a double expansion.  I think I will be able to because I will know this is the only chance to do them until after radiation.  Although I have a little lift already, I want more.  I'm a little greedy!  I still have restrictions, but can do a little more.  I can carry and hold Ryan.  I can not do anything that requires the use of my pectoral muscles, so I can't get back into bench pressing just yet.  I also should not run or jump, both things I have also missed a lot!  

With New Years right around the corner I have a few resolutions.  The most important one is eating healthy.  I have been gearing up for this by eating anything that I want this week.  Next is working out. Again, not something I do enough of besides chasing children.  And lastly, enjoy life the way I have the past 6 months.  I can not say enough how ready I am for 2012 to come to an end!  The birth of Ryan was very special, but this cancer thing came along and just destroyed my year!  Bring on 2013.  I'm ready!!

Happy New Years To All!!

Love always,


Saturday, December 22, 2012

Week 2 Post Surgery

What a week!  It has been a week filled with all different emotions!  Last Friday I met with my Plastic Surgeon.  Tuesday I saw my general surgeon. The appointment lasted maybe 10 minutes, just the way I like it!  Dr. Bethke felt I was healing well and does not need to see me for 6 months.  Wednesday I met with the radiation Doctor and I have to say I love her already.  She is the sweetest lady ever.  Instead of shaking hands, she hugs:)  Thursday we took Ryan to his 9 month check up and a shot.  Friday, Ryan woke up running a high fever and must have been really feeling crummy because Ryan does not ever sit still and he spent Friday just cuddling with Whitney.  In the afternoon I went up to Naperville to meet Don to go over my pathology report with Dr. Hantel.

Plastic Surgeon: Last Friday I visited my plastic surgeon and they removed my drains!  YAY!  I will have to say the pain when they remove these is right up there with child birth!  Holy cow!  I had no idea what to expect and even though my chest area is numb, I felt so much!  They did my right side first  and I got teary eyed but by the left side, she removed both drains at the same time to I think avoid extra pain and it was like Ralphy on the Christmas Story when he is helping his father change the flat tire.....It was an out of body experience and the Physician assistant you could tell was entertained with my flavorful language!  My goodness was this uncomfortable pain!  But they are out!!  I will go back on December 28th for another visit.  They are concerned about the healing on my right breast.  It looks as though some of the skin has died.  This is, I'm told "normal".  The next appointment will consist of the removal of some of the dead skin and or my first expansion.  They are hoping to do a couple expansions before they have to stop.  You can not do any expansion after a "planning" session for radiation.  (Explained below).  They will not release me for radiation until the skin is ready, which is usually 4-6 weeks post surgery.

Radiation: I am tentatively set up to have my "Planning" session for radiation on January 7th.  This consists of a CT scan to have clarification of where everything is inside of me in regards to my ribs, lungs, heart, etc.  They will also build a mold of my upper body so when I come in for radiation, I am in the same position each time.  They will also tattoo me so that they know just where the beams of radiation need directed.  If all goes as planned, I will then have a dress rehearsal on January 21st and if everything lines up correctly, radiation will start January 22nd.  I will have 6 1/2 weeks, 5 days a week of radiation.  I laugh, because they do not do radiation on holiday or weekends....Guess cancer does not grow on these days!  Just another reason it should always be the weekend!!!  The radiation will cover my right armpit, neck all the way down to below the breast.  Side effects are dry, itchy, sun-burned type skin.  Also fatigue and possibly a hoarse voice since the area they are aiming at is close to my neck / vocal cords.  I have all of my appointments set up.  The plan is for the first couple of weeks, I will go at 3:30 because that is the only appointment they have.  It is sort of a seniority thing.... Not really but the ones going through it currently have all of the good spots, but people are constantly finishing.  Starting February 1st, I will be at 8:00 am every day.  The hospital where I have chosen is right by the interstate for me to get on to go to work.  So it will just become a part of my routine.  If all goes as planned, my last session might be on Ryan's birthday.  So a reason to celebrate....I hope so!

Oncologist: My appointment was yesterday at 1:45.  Don met me there.  I have to admit it felt good to go in there yesterday.  I miss the staff.  What didn't make me happy was how busy the waiting room was.  It just makes me so sad!  We met with Dr. Hantel, I have never had such a serious appointment.  I am hoping some of it was we have not seen each other in awhile so we were just off.  I'm not quite sure though.  Dr. Hantel reviewed my pathology and explained that although I am cancer free currently, the form of breast cancer I have (Triple Negative), there is a high chance that it could return.  He explained things that I have already known, but to hear it again hurt.....Unlike hormonal forms of breast cancer, there is nothing out there proven to keep the cancer away.  Remember, a hormonal breast cancer can be plugged with a pill that is taken daily by the survivor for 5 years to keep the nasty cancer away.  Tht doesn't always mean the pill works, but it is something.  There is nothing for Triple Negative.  Again, I have known all of this so this was not news to me.  But being done with chemo and now surgery and then to hear we are at a fork in the road: Will I choose the path where I am cancer free or the path that has cancer.... I felt again like I had an out of body experience, I begged Dr. Hantel to find something to help me.  He could sense my fear and concern and I believe felt the same way. I truly have begged with God through all of this in my prayers, but never out loud.  I need help!  I don't ask for it often, but please help me!! He informed me he has talked about my case with a few colleagues and they do not believe there would be any benefit for more chemo.  And there are not many clinical trials that he would consider for me or that I would qualify for.  After begging some more and bringing out the water works, he said he has one more outlet that he will look into.  This would be a chemo pill used for kidney cancer.  There is not a lot out there that shows it does any good or bad for breast cancer patients.  He told me he would look into this and get back to me next week, but not to get too excited about it.  For now, he explained that I am cancer free and need to just focus on that.  Not very easy to do....I left there with a better sleeping pill and an anti-depressant to help with the anxiety.

Again, nothing he told me yesterday I have not researched or been told previously.  I think what was so difficult is yet again I am helpless and do not have any control of what path my body will take in this.  Since June, I have been able to rely on chemo to fight off the bad guys.  Then there was surgery that removed that unwanted tumor and even though I had lymph node involvement, I felt good about things, that big nagging tumor that I woke up to daily and felt was gone.  That was reason enough to celebrate!  It wasn't until yesterday and being told there is nothing to keep the cancer away that I panicked and I think let myself come down from my high and back to reality that I will NEVER be the same Amber that I was before.  I have not let the fear of death creep in for so long, but I have to say it is back!  I just can not understand why there is not anything else that can keep me cancer free!

So yesterday was one big pity party for myself which I again, have not done in a long time!  I am trying to remind myself of all I have been through these past 6 months and if it were not for the missing hair, I would think I could still fool most people that I am not fighting for my life.  I will get back my fighting attitude and continue my goal which is to continue week after week, month after month and year after year, to walk into Dr. Hantel and Dr. Bethke's office and have them shake their head at me that I am still around.  I know the odds are not in my favor and that really sucks a lot, but no one knows my fate and that is what I have to remind myself of every minute, day, week, month or year.  However many times that I need to.

So I woke up this morning and cried at first, then I got up and decided I have to live like I was living before seeing Dr. Hantel yesterday.  It is his job to inform and educate me to the best of his ability, but it is my job to live my life.  So I'm not back on track, but getting there!

My mom and dad are driving in from NC.  Please pray for them.  They will spend today through Christmas Eve with their mothers and then drive up to our place after Midnight mass with my Grandma Freeland on Christmas Eve.  Jessica and her family fly in on the evening of Christmas Eve too.  Please pray for their safe arrival and an uneventful flight for her and Eric since traveling with 3 kids does not sound too appealing.

Please continue to pray for my family.  They are what keep me going, but I know they struggle just as much as I do.  I need extra prayers for myself for the continued healing, emotional stability and for me to just trust that my body will do what it is supposed to do for once and keep the stupid cancer far away!!

Merry Christmas to all and Happy New Year!  Since the world did not end (I have say I didn't want it to end, but I was hoping for a do-over or something where all evil disappeared which included cancer, diseases and bad people)  Here is to a cancer, disease and evil free 2013!!

Lots of Love,


Thursday, December 13, 2012

A week Has Passed

A week ago today at this time I was under anesthesia and had no idea what was going on.  My family sat in the waiting room awaiting to hear from the surgeons that everything went well.  It did, our prayers were answered!!  This week my prayers have also been answered because each day I feel a little better than the day before.  My last request for prayers was for my pathology reports to not be too scary and those were answered (in my opinion) as well.  Thank you to everyone for the prayers and continued support!  

I will start with my pathology because that I know is what everyone has been waiting for.  Dr. Bethke called last night around 5:30.  So nerve wracking to wait around for a phone call that then lasts a matter of seconds!  He explained to me that the tumor in its largest area ended up measuring 5.5 cm.  He said they took 19 lymph nodes and of those, 9 tested positive for cancer.  So I am staged at 3A.  At first I was discouraged, so if you are by reading this, go ahead and be discouraged, but read on....There is no time to be down after you put it all in perspective.  

First I went to Justin's Christmas concert and didn't think much more about things, then when I came home, I did do some research.  Of course I was originally thinking, I was a 3 before this and after 16 rounds of chemo, you have got to be kidding me!  I won't lie, this is still a thought, but the tumor shrunk by half and 9 nodes out of 19.....It could have been more and maybe they took the only 9 that were cancerous.  I also am a 3A, not a 3B, 3C or stage 4.  So no better, but no worse.  

As far as the staging goes, here is the best I can do: 3A means it is bigger than 5 cm and has spread to lymph nodes in the arm pit.  3B, it doesn't matter the size of the tumor, but it has spread to the chest muscles and also the skin.  Stage 3C, spread in the arm pit lymph nodes and behind the breastbone, neck and clavicle.  Stage 4, it has moved to other organs of the body.  So take the information and panic for a second, but then come back with a positive attitude and outlook because that is what I am choosing to do!

The next steps will be determined by my Oncologist, Dr. Hantel.  According to Dr. Bethke, he does not believe this will involve anymore chemo because I am probably maxed out on the current treatments.   He thinks my next step will still be radiation.  Radiation should work just as aggressively as chemo to ensure all of those stupid cancer cells are gone if any were missed.  So I have called Dr. Hantel and left a message to set up an appointment.  I know nothing can be done until I am healed so I am really not going to rush around and try to get in there before the holidays because even if he tells me the plan, I can not start until everyone is okay with my recovery.  

As far as how I am feeling, I can tell I am getting stronger every day.  I have been able to shower and dress myself which is huge considering on Saturday, I could not do either.  I am also able to reach further.  I still can not lift and I learned last night, I still can not reach over my head.  I tried to waive to Justin on stage last night and realized I could not do it.  Last night was the a test for me, we left to go to Justin's Christmas concert.  I took some pain medicine before we went, but I felt pretty good there.  I was concerned I was going to get there and not be able to handle the pain, but I think I did fairly well.  It must of wiped me out though because last night was my best nights sleep that I have had since the first night home from the hospital.  

My week of rest is coming to an end!  Starting tomorrow, I have a busy schedule again and I am not so sure I am liking it!  It will be busy and will take a lot out of me, but I'm hoping as the days go on, my healing will continue and they will become easier and easier.  Tomorrow is a follow up with the plastic surgeon.  I am hoping he removes these drains!  They are so annoying and my out-put has been minimal, so I am hoping they will just remove them!  If they don't remove all 4, at least 2 but really, give me all 4 please!  Next Tuesday I have a follow up with the surgeon, Wednesday an appointment with the radiation Doctor and let's just throw one more in there, Ryan has his 9 month on Thursday.  So even if Dr. Hantel wants his time with me, I am not quite sure next week is good for me!  I am one busy lady!

Things are going well though.  Justin has been staying home from daycare since my parents have been here.  Someone just drives him to and from Kindergarten.  Tomorrow he will go back to his normal routine, which I will secretly say, as sad as I am to see my parents leave, it is time for him to get back to daycare / routine.  Ryan is curious as ever and is in to everything.  The one good thing about me being out of commission since he was 3 months, he will go to anyone.  So with me not being able to lift him has not been a big problem.  But really he prefers to just roam rather than being held by anyone!  Don went back to work on Monday since I had plenty of help around the house.  My parents will leave tomorrow morning.  Whitney will still be here to help with Ryan and with me.

I am off now to do something, I am not sure what, but something!  This sitting around is so hard for me, but I will admit I am kind of enjoying the daily naps and just being able to breath some!  The stupid tumor is gone and even though I did not have a clear pathology, I can breath more than I could before knowing my enemy was still inside of me!  

Thank you for the continued prayers and support!


Sunday, December 9, 2012

Day 3

Not a lot to report.  Today was a little better than yesterday.  This weather is not helping.  It is rainy here which made me just want to nap all day.  I did take an extra nap today, but made myself get up to play a family game of "Life".  Justin won.  Little does he know, life isn't about the money you make.....It was fun!

Yesterday I had my first shower.  This was more difficult than I would have originally expected.  I think it is hard to imagine just how little you can do when you can't raise your arms up over your head.  Don had to help more than I thought he would have to.  We also removed my pain pump.  I thought I was going to pass out.  I don't have much feeling in my chest area, but you could tell he was removing something and I could picture it, so it was making me sick. I'm glad that part is over with.  I wasn't really utilizing the pain pump on my own so it was time to go.  

Yesterday I also took my first look....They have warned me that this first look should not be taken serious.  I look like I was used as a punching bag, I'm bruised everywhere I look.  I will say it took my breath away.  I know over time, this will get easier to look at, but it is overwhelming at this time so I am going to boycott showers until it is time to get my implants.  Just kidding, but I do hope as the pain goes away and I continue to heal, I can bear looking at myself in the mirror again. I do not have any feeling right now and I am not really sure how much will return.  It is just weird and I will leave it at that right now.  I'm kind of  focusing on the healing part and trying not to think much more about my appearance as I still have a ways to go with the cosmetic part. 

Last night I had a difficult time sleeping.  I have been sleeping in silky pajamas, which help me to get in and out of bed on my own in the middle of the night.  They slip right off of the sheets.  I have tons of pillows propping me up too because it also makes it easier to get in and out of bed and also it seems like when I lay myself all the way down, the skin feels tighter and that hurts some.  I have been taking 2 pain pills at bed time and last night I was itching like crazy.  I am blaming this on the pain medication so starting tonight, I will only take 1 and see how I can do.  During one of my midnight scratches, I was wiggling to sit up and realized not only do I not have full use of my arm and chest muscles, but I also never really regained use of my stomach muscles.  Being pregnant and then having a c-section, 9 months later, most are probably fully recovered, but I started chemo when Ryan was only 3 months so I was nowhere near being fully healed from that.   So what works is I use my fists and plant them into my bed and take a deep breath to get to the sitting position and then I just wiggle until I am at the edge of the bed.  It probably looks hilarious, but it is so not funny, but I'm smiling thinking about how I do this right now because it has to be a funny sight!  So this should be toning up my stomach muscles no problem!  

I still have not focused too much on the next steps.  I have to be honest, there are times that I forget I'm recovering from a surgery for cancer.  I am just so focused on healing that it is easy to block out that there is still some unknown questions that we will get answers to this week.  I just know that no matter what, I have to continue on so just tell me what I have to do and I'll do it!  

Tomorrow I am hoping to get out of the house.  I am getting a little stir crazy.  Probably just to take Justin (with more help) to get a haircut and maybe to get some more camisoles that hold drains.  I will have drains for about another week and I have found one I really like and one I really hate so I need another one.  So we will call around to see if any of the wellness centers around here can refer me to a place and if not, I will just order another one on-line.  

That is all for tonight!  Hopefully tonight will be a better nights sleep for me!

Saturday, December 8, 2012

Good Morning,

2 days post surgery and I'm doing good.  Still a lot of pressure across my chest and pain in the armpits, but it is being managed by my pain medicine.  Thursday was a blur to me.  We drove 2 cars up to Northwestern.  1 car was Wendy, my dad and Whitney.  The other was Don, me and my mom.  I was so surprised how on time they kept us.  My direct supporters took the best spot in the waiting room.....2 couches I think and a TV.  Don and I went back to a pre-op room.  Sheila (my friend from college and one who used to work at Northwestern in nuclear med) had her friend Jennifer do my injection test and brought me a bag of post surgery goodies.  This being a teaching hospital, I had several students come in and then the surgeon.  The last guest was the plastic surgeon who just like the show, drew all over my chest so they knew just what to do.  They then drugged me pretty good, because the last thing I remember was being wheeled to the operating room and holding hands with my surgeon.  Sounds awkward probably to some, but I thought it was a sweet gesture!  

Next thing I knew I was waking up in the recovery room.  I was full of questions and my head was freezing!  They informed me that my body did great during surgery and in recovery.  I wouldn't expect anything different, but you know you never know.  You hear or see on Gray's Anatomy how the pressure drops or other odd things happen.  I know it is a TV show! Back to my freezing head, I asked for a warm blanket for my head and the nurse wrapped me like a mummy.  It felt awesome until I had a hot flash!  Then I told the nurse to get it off of me quick because I was getting nauseous!  

We were moved to a room around 2 hours after surgery.  This is when I started to really come to because the pain and pressure was unreal.  I had a morphine pump that helped, but the pressure was so weird.  It was hard to breath and felt like what I would think a heart attack feels like.  I asked one of the students at one point when she came to check on me.  She confirmed it was not a heart attack.  This is all normal as the expanders were placed behind my chest muscles so this is added pressure and soreness from them moving things around.  I also felt pretty nauseous!  

Yesterday I woke up still nauseous but as the day went on, I started to feel better.  In fact, when I woke up, I didn't think I would want to come home yesterday.  I just still felt sick and sore and couldn't think about being home that way.  But as they switched me off of the morphine and put me on oral pain medicine, I started to handle things a lot better.  So after several naps, I decided home was going to help me more than the hospital.  The constant interruption and the noise was bothering me, plus my kids are the best medicine!

So the main question is, did they get all of the cancer?  Well, all of the breast tumor was removed of course with the mastectomy.  During surgery they tested my lymph nodes and unfortunately, they did find cancerous lymph nodes so they had to remove the first 2 levels of my right armpit lymph nodes.  I guess you have 3 levels.  Per the Doctor, they really don't know how much they remove, but they were sent to pathology to be tested and we should know more on Wednesday.  This was discouraging to hear, but I guess came as no surprise to the Doctor and quite honestly, I kind of had a feeling this could happen since the tumor was not completely gone after chemo.  The number of positive nodes will kind of determine the next step.  They mentioned radiation, which was already a part of my plan after surgery so if that is it, that will make me happy.  If it means more chemo....well, I will do it, but I was kind of liking growing hair back, no but this will be frustrating, but again, I will do whatever is necessary.  

So prayer warriors, we need you to continue to do your thing!  Obviously for results next week that the lymph node involvement is not too scary and a plan is put into place.  And of course that just because the cancer was in my lymph nodes does not mean it spread anywhere else in my body.  And also that my body continues to respond well to the pain medicine and I continue to heal.  Thank you for the prayers getting me through the surgery!  

Sunday, December 2, 2012

Well, the week has finally arrived!  4 more sleeps until surgery!  Probably more like 3 more sleeps, I don't see a lot of sleep happening on Wednesday night and even if my Ativin allows it, we have to be at Northwestern at 5:30 so we will be needing to leave here around 4:30.   2 more days of work which will probably be a blur with all that needs done and updating that must happen for my 4-6 week vacation.

This past week was a great week!  Nothing new to report.  Don and I stepped out of reality for a few days which was nice.  It was nice to get away and "forget" that I was sick.  Not that we forgot, but during the day we were so busy being normal people that it was easy to set our fears about the past 6 months or this next week aside!  Friday night on our return home, I noticed all of the fear and anxiety crept back in.  We started to be short with one another, I put back on my turban and I was very tired!  All which are constant reminders of my illness.  Back to reality!

Yesterday before we went to pick up the boys from Don and Wendy, we decided to get our tree and put the lights on it.  Don came home with it and it all hit me how scared I am for this next week and for my future.  I was overcome with emotions and it started out to be an extremely hard day.  Christmas is a time to do or start family traditions and enjoy time with friends and extended family.  I intend to do all of the above, but my God does it mean so much more this year.  I will not let this be my last Christmas, but starting family traditions, seeing family and friends all have been moved higher on my list of things that maybe last year I thought, not this year.   I was able to get past the weeping and pick up the boys and enjoy my last Saturday with boobs, but it started out pretty rough.

When we got home, Justin had a great time decorating the tree and helping Don set up the train board.  Ryan had a great time being told "NO, Don't touch"!  He laughs when he hears those words so I take it that he had a great time!  Today I'm taking them to see Santa.  Justin is obsessed with Santa.  He has written letters and is convinced he is watching all the time.  It is so cute to see him get so excited about Christmas!  I hope he believes until he is 20!  Not really, but a kids imagination is priceless!  Ryan won't understand it but probably won't cry when he sits on Santa's lap since he is my little prince that has no fear!  We will see though!

My family will need a lot of prayers this week.  We appreciate all of them.  Mom and dad will get in Wednesday evening so prayers for their safe arrival.  Prayers that my blood counts continue to increase.  I learned Wednesday before our trip that my counts are still abnormally low.  The nurse says we are still on for surgery, but I need my WBC to increase because I can not afford to get an infection of any sort before or after this surgery!  Prayers of course for the day of surgery.  I know my fears and anxiety will be out of control.  Prayers for the surgeon and plastic surgeon that they go in and do their thing!  And most of all, that they can go in and get the stupid cancer and rid my body of it FOREVER!!!  And lastly a prayer for me!  I have to sleep through all of this which doesn't seem hard, but I need prayers that my body does just that and nothing out of the ordinary happens during the procedure.

So I leave you with a lot of requests this week, but I know all of you pray for me daily and it means so much!  I know you will do as I have requested and my hope is next week I'm up and blogging again about the experience and how simple it was!

I love each and everyone!