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,

Amber

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,

Amber



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!

Amber

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!

Amber

Monday, November 26, 2012

The Dash

Good Morning,

I do not have a lot to report.  Just counting down the days until surgery.  I have mixed feelings about this date.  Am I scared, Yes, scared that a simple surgery could go wrong.  But I think everyone has that fear before they are put under for a procedure.  Am I anxious, Yes, anxious for my blood work and pre-op testing tomorrow to come back within normal levels so we can know for sure the surgery will happen on 12/6/12.  Also anxious for how I think I will feel the morning of not only before the procedure but after.  I can only imagine the nerves that will go along with that morning!  I also wonder how I will actually feel when I wake up and know the not only the cancer is gone, but my breasts.  I try to joke about this a lot and I mean it, but I know deep down, this will bother me.  They are a part of me.  They probably deserve their own blog!  I hope they can give me some good calming drugs:)  Am I excited, yes, a little excited to just have another part of this journey done and over with.  

So as the date gets closer, I notice myself thinking more about things and I'm trying to find signs everywhere that it will all be okay.  I know I am in great hands and all of the prayers that will be said, there is no other way.  My job is to rest while they perform the surgery and wake up and be thankful the tumor will be gone from my body.  The next steps will all be up to me and my body.  I think I can handle that, right?  

Since I really don't have much more to report, I thought I would share a poem.  This was read when Don's Aunt Donna passed away in March.  I was not able to attend her celebration of life as I had just had Ryan by c-section and was down from that.  But I stumbled across the poem again the other day while I was on Pinterest.  I use a lot on this site, but recently I find myself in the Quotes section, looking for the right signs.  This one showed up last weekend:

The Dash Poem, by Linda Ellis
I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end

He noted that first came the date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was “the dash” between those years

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash”

Sunday, November 18, 2012

Sunday Morning

Good Morning,

Not a lot to report this week!  No chemo, a full week in the office....It almost felt like I was a normal person!  Monday was Don and my 7 year wedding anniversary.  We came home from work to a delicious dinner prepared by Whitney and my mom. Just spent some quality time with my family before they left on Tuesday.  I was still pretty wiped from Friday's treatment, but still was able to get some family time in. During the day Monday, my work surprised me with TONS of snacks to celebrate NO MORE CHEMO!  I love my office!  They are a 2nd family to me!  Thursday I saw my counselor and actually didn't cry about anything!  It almost felt like it was not a productive session because I was doing just that good!  I'm sure I need to see it through the good the bad and the ugly, but it felt good to get through a session and be told I'm doing good!  

Friday came and went without much thought of not going to the Edwards Cancer Center.  I can't say it wasn't on my mind because it was, but like other things I have experienced through this nightmare, I feel like the anxiety build up is way worse than the actual experience.  Call me crazy, but I would still go if they called and told me they were giving out chemo like a weekly sales ad.  It just feels like it protects me and right now I'm walking around without my protection.  It also was something I could control by showing up and getting poisoned weekly and knowing it was killing the cancer.  When I'm not getting anything, I feel like I have no control over this stupid cancer until it is removed from my body!  So of course it is on my mind, but emotionally I feel like I'm doing better than I thought I would.

Yesterday my high school girlfriends, Lisa and Megan came up and we shopped!  Oh did we shop!  We hit the mall for ourselves first and then decided to take it serious and headed to the Toy Stores and kid stores!  We didn't get home until after 9 last night!  This is the first year I have really shopped.  Usually Don and I go out and get a little at a time or order on-line.  This was a lot of fun!  I do not think it would be fun if you weren't in the right company since I don't consider myself a huge shopper, but these girls and Whitney made it so special and fun!  Another great memory to put in the books!  And maybe a yearly thing girls? 

This will be a great week since it is a short work week, but also favorite holiday.  Christmas really is, because of the kids, but I do LOVE Thanksgiving for myself.  This year, as hard of a year that it has been, I still see the good in it and have a lot to be thankful for.  Family, friends, work, Doctors, nurses, research, insurance, etc.  So much that I'm sure I'm missing something.  So many new people have been brought into my life like Doctors and nurses that I thought before now would never be in my life and although they were hard for me to accept in, they, like my family and friends, have my best interest in mind and are only trying to help. So for that, I am thankful for them.  

So as much as I want December 6th to be here, I have to say that I am enjoying the down time.  I hope this week is just as uneventful as last and that I can keep my anxiety in check and enjoy the holidays with family.  

Happy Thanksgiving to all of you!  

Love,

Amber

Friday, November 9, 2012

12th and FINAL TREATMENT

I have made it!  Can you believe it?   I started this unwanted journey on June 21st when I learned of my diagnoses.  Well, actually June 19th when I was able to see a Doctor finally about my concerns.  Well, actually a day in late April, when I first initially felt a "clogged milk duct" that wouldn't go away.  Let's just say this has been a long journey, but the part that everyone warned me that would be the hardest is behind me.

I started the chemo journey with my dad and Don at a chemo class.  Learning of all the nasty side effects: hair loss, fatigue, nausea, numbness in your fingers and toes, loss of appetite, loss of taste, losing weight.  The scary list went on and on.  Of those side effects, I took them and tossed as many as I could directly out the window.  Who has time to be tired with 2 kids to care for?  Loss of appetite?  If I have to have cancer, I'm going to eat everything.  This was my initial plan, that I then read about and learned it wasn't the best thing.  But to discuss appetite a little, mine has never gone away.  Nausea, again I took the medicine while I was on the first drug, but after I switched to weekly treatments, the drugs have been so much nicer to me, I have taken anti-nausea 3 times.  That is AMAZING!  I think when people think of chemo, they think of someone hugging the toilet, I NEVER DID!  I could not get past the hair loss at first, but I have come to terms with that and it is growing back at such a rapid pace that it almost gives me something to look forward to each morning when I look in the mirror without anything on my head.  I do still do the shocked look too that I will describe as "WOW, oh my God, it is real, I don't have hair and I do have cancer".  You wake up daily as a cancer patient and hope it was a bad dream.

This past week, I started to get almost every side effect listed above.  My taste buds have been cashed for the past few weeks, but I am a huge fan of spicy foods, so I have been able to keep them satisfied as much as possible.  The fatigue was killer this week.  It reminded me of taking the first round of drugs where I felt like I could close my eyes where ever I was and I was out.  The numbness in the finger and toes.....HOLY COW!  I can't open things well this week and they feel like they are asleep all the time.  This is probably the most annoying thing.  The Doctor feels that since this side effect visited so late, it won't stick around too long and with my age, it will eventually go away, but OH MY!  This can disappear at any time.  I look weird and can't stand it.  So if you notice me struggling, just help me would ya?!  I caught Whitney laughing the other night as I was trying to use a fork and my food kept slipping off of my it.  I laughed too:)  Have to laugh!   I have decided that my side effects may have been around all along but maybe I have been able to block them out.  Who could complain about this stuff 20 weeks ago knowing you have 15 more cycles of drugs to get through?  If you are tired at the beginning of a race, that is going to make the race 10 times longer.  So I do wonder if I am just now allowing myself to say I'm tired or that I'm numb....So maybe I just want some attention.  Sue me:)

It was bittersweet that my dad and mom are here this weekend to complete this journey.  More so that my dad was my partner since he was there at the beginning of this too.  Again, since he was at the initial class, learning along with me and watching me cry because I was so damn scared to lose my hair and lose control of things but mainly the hair.  Then to come today and watch me go through this like watching me do a routine of changing a diaper or something.  I have come so far and I have accomplished so much!  I would still prefer to not add this stuff to my life's bucket list, but I  DID IT!  I am so proud of myself!  And as much as it was not easy for him and my mom to have their daughter do this, I know they are proud of me too.  Probably just as proud of me now as they were to watch me graduate high school and college, or getting married to my best friend or giving them 2 sweet grand boys.  The bitter part is this is not something a parent ever wants for their child.  I know this because as a mom, I would be crushed!  I would be on a lot harder of a drug than chemo to get through that.  So I am just as proud of them!  They have watched me struggle, cry, laugh, scream, crawl in bed with my mother because I was so scared those first few days.  I haven't done that in I think at least 20 years, right mom?  And let's not forget, I think I may have thrown things at first too out of anger, not so proud of this one, but it happens.  Bottom line, they have listened, cried with me and cheered me on!  l remember their words from the beginning when I said I was too weak of a person to get through this, they continued to say over and over: You will beat this.  We have no doubt....YOU WILL BEAT THIS!  I remember this and when I do forget or get scared, I think of it often....YOU ARE DAMN RIGHT I WILL BEAT THIS!!!!

Certificate of Accomplishment that I have Earned through Edwards Cancer Center Today
Mom and Dad This Morning -Dad and I on our way!
Next was Don.  Don took his wife weekly to appointments that half the time I couldn't speak through.  While waiting for a Doctor, I couldn't keep up a conversation and became a Facebook junky because it is easier to look at the crap on there than to talk about our life.  But he sat and continued to push me through this.  he continued to make small talk with me to try to take away the fear.   While he didn't always succeed in this, he was there and that is all that matters.  I know this is hard on him, I know he struggles daily with the same nightmare that I have as he wakes up to a wife without hair, it reminds him that I am sick.  This isn't what we envisioned for our future together when we said "I DO".  Don too has witnessed me kicking and screaming and yelling at him for things he has no control over.  Yes, he might yell back because everyone needs  a good fight and I shouldn't win just because I'm sick, but he has been patient, kind and caring.  That is all I can ask.  I do have to remind myself this is not all about me and he is struggling too.  But he keeps our day to day going and has been just as optimistic as everyone through this.

Whitney....Oh Whitney......I still owe a blog about her, but I was afraid someone would offer her money and take her away.  Seriously can you say Mary Poppins?  Only cuter that that!  Whitney is a mother to my children right now.  I sometimes see the way they look at her and if it were a given day, being the real mom, it would probably make me so jealous, but I know why she is here and I know why they look at her the way they do.  They know she isn't a mom, they know she is an angel!!  She has put her life on hold to care for me, Don, Justin and Ryan.  She is 25 years old.  She I'm sure complains to someone, it isn't me, because she has taken the role of a mother and wife around here and rarely gets down time and if I stayed home and did this and didn't have work, I would have some one's ear about it.  Even when we are home, she is helping out.  I feel so guilty at times, but I know that is what a sister is for and while the job is tough, she knew that going in and I will say it again, I did not tie her up here and force her to stay.  Her departure will be difficult.  While I'm sure she looks forward to going back to a 25 year old, I also know she will miss my boys like they are her own.  She will be mother of the year one day!  But for now, she is aunt of the year! She will get her reward someday!
Dinner for Whitney's 25th birthday

My in-laws Don and Wendy have also walked by my side through all of this.  They have taken on more than anyone should have to this year.  With the loss of Don's sister (big Don, my Don's Aunt) 2 days before Ryan was born, celebrating Ryan's birth and first 3 months and then stepping back into the cancer world!  Why?  That is crummy!  Having to witness their son go through this and be at a loss of words and their daughter in law who was probably viewed as stubborn before all of this.....I went from never wanting to ask for help to needing help at the drop of a hat.  They have always stepped in and have given Whitney the break she has deserved and sometimes this comes with little to no notice.  It is just amazing!

There are many of you I want to personally write about, but that will take me years and although I have those years, I need to get out there!  So I know you get it, but I hate personalizing because I am seriously at a loss for what all have done for us.  I will be and have been paying it forward because I do not know if I had not had to stop to smell the yucky roses, if I would have slowed down some and realized on a daily basis an individual can struggle through so much and sometimes a card, phone call or e-mail can just put that smile on some one's face. I am just so touched at people's compassion, effort and creativity through this.

This road has not ended, as I still have a lot ahead of me, but we are continuing down it.  It is nice to put the chemo behind me.  I plan to keep up on my weekly updates as I think it helps to let you all know how we are doing and it helps me put my thoughts out there.  So stay tuned to Chapter 2: SURGERY!

Love you all!!


My boys giving me a final pep talk before chemo


My good-bye to Taxol today!  FOREVER!!!

Amber

Friday, November 2, 2012

11 DOWN 1 TO GO!!

"You have worked so hard and come so far.  Now look what's ahead.  A finish Line with your name on it.  Only the final stretch awaits you.  So strap in.  Put on your strongest obstacle repellent and stay the course.  You can do it"  

This was posted from Christine McTaggart on my Facebook today. She is my breast cancer pen pal I have spoken about on here.  She is also fighting breast cancer and will start her 12 weeks of Taxol this coming week.  She will do just as well as I did and be on her way just as I will be soon enough.  She has 3 beautiful children and a wonderful husband.  Like me, This  is what is keeping her going daily.  Thank you for our daily e-mails Christine. 

This has been a week of information overload.  I am so glad for this week to be behind me!  A BIG DISCLAIMER, THIS Might make you blush or you may feel like this is WAY too much information.  But I'm trying to give everyone the real outlook on this and trying to do it in true Amber fashion because as hard as this will be for me, I have to find the humor in it and I just don't know how else to say it.  So if you want to skip skip *but you are missing out:) 

Let me start with Wednesday:  I met with Dr. Fine from Northwestern.  He is the plastic surgeon.  We went over the entire surgery but more importantly his part.  He will come in towards the end of a 4-5 hour procedure (around half time) and start the reconstruction.  He will put in the expanders and make me look as natural as possible for my wake up from my wonderful nap.  I don't need to tell him size or exactly what I want or envision as a final product just yet.  First we have to get past the radiation. This surgery is a 1 night stay in the hospital and 4-6 weeks out of work. He will see me the first few weeks after surgery as I will go home with drains that will come out of my arm pit area.  The first week, he will remove 1 drain per side and just check on me.  The 2nd week, he will remove the 2nd set of drains and plan to pump or inject my expanders some to stretch the skin.  Depending then on when radiation starts (it will depend on my healing and the radiation specialist) this may be it.  Once radiation starts, there is not any injections or tweaks made with him.  My next visit with him would be 4 weeks after radiation.  At that time, we will schedule my implant surgery.  Assuming all goes well with radiation, this is an outpatient surgery where they take out the expanders and slip in the implants and BAM!  I have a nice new set of boobs!   Home the same day and 2-3 days off of work!  Then 4 weeks from there, I would go back to his office and have a permanent tattoo of my nipples permanently tattooed on my body, I'm hoping they have a pallet that I can choose exactly what I want!  Maybe like going to get my pedicure where the polishes all have appealing names!   Perfect case scenario right?  But we know there is always a BUT....Now for what happens if this doesn't go as planned: 50% of the time is not so favorable.  The radiation can cause the skin to tighten which causes the expanders to not sit right / natural or cause pain for me.  If this happens, the 2nd surgery will not be as delightful.  Instead they will have to graft skin off my back (under my bra line) and put this skin on the lower part of my breasts to allow for more room for the implant.  This will be a 2-3 night all paid stay in the hospital and will require a 66 2/3 percent all paid leave from work for 6 weeks minimum!!!  NO!!  We won't know until after radiation of this is required.  

Next was this morning meeting with the Surgeon, Dr. Bethke.  He started by doing an exam and was so impressed with the results!  He told us something that we were floored by.  He felt that the tumor measured more like 10 CM when I first came in that scary day in July and now it was around 4 CM.  So still huge for tumor, but See how far I have come?  He is more than confident that he can get in there and "scoop" it out.  This is the word they all refer to as taking out the tissue.  I hate it, it reminds me of ice cream.  YUCK!  I digress, but he is so confident and this made me feel awesome!  He does not want another breast MRI before surgery because the best way to get true size is to take it out.  So no yucky tests before surgery.  Just pre-op blood work.  Thank you Sheila again for referring me to him.  I knew you were in my life for a reason, even though that freshman year in college you corrupted me and oh, don't forget, mistakenly thought my mother was me and called her a bad word as she was hard at work making my bed after a weekend at home. I have asked her through all of this to forgive you and I think she has.  Count yourself lucky!  Again I digress!  

Before surgery they will go through my nipple and inject a dye that will lead them to any weird lymph nodes during surgery (Sentinel Lymph node biopsy) They will remove these nodes and send them off to pathology while I'm still napping.  They will have the results before the surgery is over and if they are positive or the Surgeon has concerns he will decide there if an Axillary Lymph node biopsy is required, this will remove the lymph node pad in the armpit area and could cause permanent Lymphedema (swelling of the arms)  This would stink to have new implants in my arms and in my breasts, but this is worst case and I'll still take it over this stupid cancer.  I will then meet with him around a week after surgery for my healing and to go over my pathology.  If pathology is back before my appointment, he will call me to discuss.

I then met with his nurse.  She showed me the drains that I will have for the first 2 weeks and a quick over view how to care for them.  She also gave me this way sexy camisole that zips up and has cool little pockets stored in them where I can keep the drains so they don't get in the way or cause problems with the little ones.  It really was a great invention and I want to google the inventor and send her a kudos!  It really isn't bad looking, but the purpose is wonderful.  The nurse then told me since the plastic surgeon is taking a vacation the week Dr. Bethke would prefer to do the surgery (week of December 10th) we were looking at around December 20th.  I begged her to see if we could go to the week before.  I agreed to get his favorite treat and bring it in.  She said she would check with him and call me later that day.  (I'm going to leave it at that so you feel the anxiety about this date that I had today)

We left there and went to see Dr. Hantel at the Edwards Cancer Center.  He walked in the room and said "Long time no see".  I replied with "I could really do without seeing you today" and we both laughed.  Again, let me say I am sure he has a great personality, but to get the Oncologist to laugh just makes my day!  He then felt and was more than pleased as well and felt has shrunk in all to a 1/4.  Next we chatted.  I then braved up and asked the hard question.  Well, I actually whispered it.  "What happens if it comes back".  I know he knew what I meant but since he knows me so well and knows I'm on a need to know basis, he used my whispering to ask me 3 times, "what are you saying, I can't hear you".  So the third time, I got it out in a normal tone, what if they don't get it all or it comes back and I couldn't hold back, I started crying and said to hurry before I changed my mind in knowing the answer.  Then out of no where, my phone rings and it is Northwestern.  So Don hands me the phone and it is the nurse telling me to report to surgery on DECEMBER 6th at am.  So not only did I get my date, I get to be the first surgery of the day!  So back to Dr. Hantel, he reaches for, only the best for his best patient, the nice Kleenex and says to break the silence and get back on track by saying "all patients complain about my shitty Kleenex so here is the good stuff" and it did click with me, I'll bet people cry so much there and their Kleenex are the hard stiff ones.  Probably cheaper, but I did tell him, they should invest in the good stuff.  So back to him answering my question.  He told me in all seriousness, he isn't concerned with the cancer coming back in my breasts since they will be gone, but he is concerned because of it being Triple Negative that we have to really watch for this cancer spreading to another part of my body.  His plan will be to see me every 3 months and do blood work in between.  I need to watch for symptoms that last longer than a week.  This includes a cough or ache or problems walking, etc.  He said this would warrant further testing (CT, MRI or Bone scan)  This stinks because it would more than likely confirm it had spread,  but then he will come up with a new chemo treatment and the fight would re-start.  That isn't good news, but he said it and I listened.  This is important the first 2 years again.  After the 2 years, my chances of recurrence anywhere lessons, but still is not normal until 5 years.  God please!  Even though I find humor in this week, that is so scary, but I knew this and it is now out there.  We just have to pray that this won't happen.  His only advise was a baby aspirin a day, healthy diet and exercise.  So this is what I will do.  I just have to keep up the fight that I have done so far with chemo.  It will be hard because I have to admit, I have never had to work for my awesome body:0  but in all honesty, I haven't been a huge exercise person, but I HAVE to be and I will!  We ended it by me asking if he is bringing treats next week for my final treatment or am I.  I didn't get a true answer from him.  So maybe he will surprise me!  I will follow up with him a month after surgery right before radiation.  For the first time in awhile, I am excited about next week and envision leaving there.  It will be hard, and sad because the nurses, Dr and staff are my friends.  But I can't say that I feel like I will be in a big hurry to go in and visit them.  

Next was Taxol and Carbo.  This was uneventful.  And then home.  This was a very overwhelming day / week.  The good the bad and the ugly.  But I made it!  I got the hard answers to my questions and found some humor in all of it.  I feel at peace.  I don't know my outcome, but I kind of do.  I feel like I'm going to do this and make it.  But I still have the fear that what if I don't.  The only way to explain if I am taken away and please go back to the humor part because this is hard to say: If I can't make it out of the darkness, I can at least say that because of this yucky cancer, I have learned to live my life and not take for granted my days here.  Not everyone nor did I really do this pre-cancer.  I have to remind myself that something could take me out at any given minute and what if I didn't have this warning call to make me wake up and enjoy the day to day more? I would regret that so much more than having this time to enjoy every minute of my life.  So take that advise and instill it into your own life.  We all sweat the small stuff and shouldn't.  If your not happy, fix it!  Life is too darn short!!!  But again, I'm going to fight this battle and win!  So my message above will be instilled into my life for a long long time too.  I will find myself living a long long life, but I think it will be much more happier if I can always remember what I just typed.  

So that is way too much information for tonight and I need to relax.  Good night!

Lots of love,

Amber 

Saturday, October 27, 2012

10

Good Morning!

Had Chemo #10 yesterday!  Chemo went smooth as can be.  I arrived a little early, they got me back there and boy was it a crowded Friday.  They told me I could have my own room, but I have kind of liked to sit on the floor with other people lately.  I don't talk to anyone, but I feel like taking a room for such a short treatment is a little selfish.  Some of these people are there a lot longer and may need more time to rest and relax and I am sitting there logged in to work and talking to almost all the nurses these days about my boys and amaze them when I tell them I don't have to take any anti-nausea medicine, my hands and feet are not tingly, I have not lost my taste of smell and taste and I do not get short of breath doing things.  Yes this is all amazing stuff and I think I enjoy hearing this from them, it gives me the support I need for the week from them to look past these small side effects and keep going!

My blood levels are about the same.  Hemoglobin back to 8.7 from 8.6 and WBC , what am I talking about, they went from 2.3 to 2.7 so they are on the rise.  Still would have a lot to rise to get me to surgery if that were approaching and still have one more Carbo scheduled for next week which will probably knock them down one final time before surgery.

Speaking of surgery, This week is going to be information overload and I know will cause a lot of extra anxiety for me so I will need a lot of extra prayers!  Wednesday morning we meet with the Plastic surgeon.  I have not met him before, Dr. Fine out of Northwestern.  My understanding is he comes in after the removal of my breasts from the surgeon to do an hour or so of work to reconstruct as much as possible and put in what are called expander's.  The expander's will allow my skin to be stretched some so that when I get my implants, they will fit like a glove:)  Again, I only know from others and books I have read but it sounds like every so often I will see him to have saline pumped into my expander until I am the size I want to be so it seems like he and I will be getting extremely close since I have decided I should shoot for the starts and request double EE implants some day!  Totally kidding!  My plan is to go as natural as possible and just thank God that they can do things like this to still make me feel like a women after having so much taken away.  But like someone posted on my Facebook awhile back, "Heck yeah, these are fake, the real ones tried to kill me".  Plus who else gets a all paid night in the hospital and implants paid for?  Okay, don't answer that, because Most breast cancer patients do get this, but I'm trying to find the positive in getting fake boobs!  After this appointment Don and I will probably try to go to Gino's East and have some yummy pizza and process as much as possible.  Then we head home and the first time in the history of kids, I will be home for Trick or Treating!  YES!  I could always have requested off at work to leave early in years past but I never have.  I work with a lot of people who have kids and have always had others request and did it on a first come first basis, but always put them ahead of me and had I been working this day, I would have done the same thing because I know myself too well.  But I need and deserve this so this appointment being rescheduled for this day was meant to be!

Thursday will be a normal work day with just blood work at lunch time. Then Friday it is back to Northwestern to meet with Dr. Bethke who is the surgeon.  His appointment is at 8:30 in the morning so this will be an early morning.  I need my brain to work and I need to have as many questions out there that I can think of.  He has one shot to go in and remove this stupid cancer.  So this appointment will be difficult not only to pick his brain but also I know it will entail seeing a lot of pictures of mastectomies and this might actually raise more fear in me.  I have researched and act brave, but this surgery I know will have an emotional impact on me and seeing pictures and picturing myself waking up at a hospital and have lost some of my women hood, as easy as I say it will be to have that stupid tumor out, I know it will be emotional.  Plus he needs to get it all?  What do you give a Dr. to bribe them?  Anybody have any ideas?  That is the important part, he needs to get it all!  I was thinking I could find out his favorite treat and bring it to him the day of surgery?  I can't pay for a trip to the Caribbean for him right now, but ideas?  Or do I just bring 2 gorgeous pictures of my boys and threaten him?  Maybe that is the best bet! After this appointment we head to Naperville for a noon appointment with Dr. Hantel where I have a lot of questions as well and then a double treatment that day.

So a huge week approaching and my throat is closing just thinking about it.  Please pray that there is no negative in any of these appointments.  I need to hear we are moving forward with surgery and that is that.  I do need to ask the tough questions of what if it is in more lodes than originally thought or if they don't get it all so I know the next steps for that too, but more importantly, I need my next steps if they get it all and I go to radiation and my follow ups that will be required to keep me cancer free.  Again this is the only way, but this lump in my throat will not go away until I know and I may just ask one of these guys for some meds to get me through the four weeks between chemo and surgery.  Those weeks will be long and painful for me.  No treatment and my fears will be sinking in I'm sure.  Plus a breast MRI to get size will put into perspective the size of this stupid thing for real!  Right now we go by my feeling it daily and analyzing the size and Dr. Hantel feeling it every 3 weeks and always being happy with the results but following it up that some women you can't even find the tumor at this point.  So good mixed with bad news.....

So prayers is all I can ask from everyone during this time.  I do have some things planned with my head shaver friends to get my Christmas shopping completed and wrapped and Thanksgiving is in there....I love Thanksgiving and have a lot to be thankful for this year, but I will be more thankful that this year is coming to an end.  It started out wonderful with the arrival of Ryan, but I would have to say the bad has outweighed the good.  I love him to death and I know he lead me to discovering this tumor, but I have missed so much of his growing up.  He is cruising furniture for Gods sake.  When did he learn this?  It makes me want to rewind to watch everything he has done, but I never want to look back and that is sad because that means not looking back on a lot of his firsts!  Some day I hope I can.  The good news is he won't remember this bad time and someday we will have to tell him all about it.

Justin had a good week, but not without injury.  He was enjoying recess at school earlier this week and stood up under a bridge outside and bumped his head causing a screw or bolt of some sort to go into his head.  Yes, it went in his head.  The school nurse called and told me they had controlled the bleeding, but I needed to get there.  When I told her I was about 30 minutes away since I was up at work, she scared me more by saying I needed to send someone closer.  Good thing Whitney is at our house and is mother of the year!  She was able to load up Ryan and go get him to meet me at the Pediatrician office. If she weren't here, I am not sure what they would have done since no one would have been able to get there any quicker than I could have.  Oh well, the Dr. cleaned it up really nice and decided there was not a need for stitches.  Justin of course was worried because his Khaki's were covered in blood and so was his shirt.  He wasn't sure I could get it cleaned up, but I did!  He was also worried because Thursday was picture day. Good thing this was on the top of his head.  I think all of the blood was due to a head injury, but he is fine and we are thankful and remind him most little kids by this point have been to the Dr. several times for falling or need stitches, so he is good!

One story from treatment and then I'm off to get some door busters shopping while the roids are still kicking!  Yesterday I sat next to a women who looked about my age.  She had on a pink shirt so I will imagine she is a breast cancer fighter like me.  Because I spend so much time in there, I can tell sometimes based off of the drugs what they are fighting.  Well, she wasn't getting drugs she was getting blood.  So this made me realize she was probably there all morning and had some time to go.  I thought, I should strike up a conversation with her. She was alone and Don was parking the car.  Then I thought, no I'll just log in to work and glance at her a few times in case she wants to talk to me.  Eventually she fell asleep so I knew talking wasn't the right thing, she was wiped out.  Finally the nurse came to wake her up to tell her it was time to go.  She was trying to wake up and I stand up and was struggling so bad.  I hope it was just because she was awoken, but I am not sure.  Her poor voice was so weak and the nurse had to help her up.  It was almost to the point where I wanted to un-hook my stuff and go help the nurse get her out.  Then it clicked, I am a patient, I am probably just as sick as her or possibly more sick.  I feel good about this next comment, but I just don't get it.  How is it that I can walk in there and open my lap top and work and be unfazed by the chemo side effects?  How do I not need help walking out of there every week with treatments and a transfusion under my belt?  I go in and walk up and down 2 flights of stairs every Thursday and Friday.  For God sake I just discovered 2 weeks ago that there was closer parking for the cancer center.  Before that I was parking usually on the third floor and running in heels to the cancer center for testings.  I walk up and down 3 flights of stairs to get to my counselor's office each week.  Am I really a super hero and don't know it?  Have I blocked this out completely that I don't recognize the side effects?  If so, is that something good to do?  I don't know, and I am not wanting to compare myself to this poor girl who looks to be going through hell, but I did thank the good Lord for my strength and not taking that away from me through this ugly fight.  People tell me all the time, my mindset is perfect and I'm strong, but I always say yes I know but I have my moments of weakness far too often too, but this was a wake up call for me.  I'm an strong like bull!

Okay, one more story and then I'm going.  Last week we were at Kohls getting a winter coat for Ryan. Whitney was off looking at some other coats and I had Ryan on the floor putting a coat on him.  A women approached me with tears in her eyes and said "I just need to hug you" I didn't know what to say but I accept her hug and a kiss on the cheek.  I tell her I am almost done with chemo and I'm feeling good and then she tells me her husband is fighting stage 4 brain cancer.  She tells me all the places she has taken him to try to heal him.  She had 3-4 kids (I don't know, I was trying to let my eyes water but not break into tears).  So add this family from Kohl's to your prayers.  Here she is living hell every day with traveling everywhere for a cancer that will probably take her poor husband from her far to soon and she was concerned with helping me get Ryan in a coat.

With that, I leave you with some prayer requests, for the family above.  For my good pen pal that I have found through my cousin Amy who was diagnosed in September and just completed the first 4 rounds of the hardest drug I think in the world....A/C.  She is off to weekly treatments like me and I we are helping each other every step of our journey together.  So prayers for her.  Prayers for my sister in law Lauren and her family.  Her mother was diagnosed about a month ago.  The tumor is very small fortunately, but she will have her surgery this Thursday.  Prayers for her surgery and recovery to go smoothly and most of all for her and them to get the piece of mind that the tumor is gone and that it did not travel to any nodes and she will be DONE after Thursday!  And of course for us that we get the answers we need this week and I can control my anxiety.  Most of all shrink this damn thing so I can feel like I have that under my belt!!!

I will post an update with pictures from Halloween this week so stay tuned!

Lots of Love

Amber

Friday, October 19, 2012

# 9

Another Friday checked off!  Almost hate to see the day come to an end.  That means 1 more step closer to ending chemo.  I hope to never go back to it EVER, but you know why I say that!  This month being Breast Cancer Awareness month is good and bad.  I'm so sick of the commercials, but yet the articles being published are coming at just the right time.  They are touching on all of my fears recently and also showing young survivors!  Why is this happening to younger and younger women?  Next, why is this Triple Negative form being found more and more after a women gives birth and stops breast feeding?  I just came across a 3rd blog this past week of a women that was diagnosed the same as me.  She was a cancer research Doctor.  It is always diagnosed late and blamed on breast feeding complications at first by the OB.....I see a need for more research on this since it is not linked to hormones and also promoting for testing after a pregnancy and finally an OB taking their patient serious whether or not they are nursing.  I'm sick of hearing this. Hmmmm anyone with me?  

Some have heard, but Saturday started this next week with a bang!  Literally!  Don and Justin went out bowling for the afternoon and on their way home were involved in a car accident.  A guy going North (Don going south) lost control and spun over a median and Don couldn't stop in time, it was raining so I think this might have caused it.  Thank GOD no one was hurt.  Don and Justin were untouched and the guy in the other truck was taken to the hospital but released.  I think he hit his head on the windshield.  Very scary for all, but since no one was injured, I am letting it go.  Don was able to go work out a deal and get a new / used car today.  We went with a Hyundai Santa Fe.  We just took delivery of my work Porsche Panamera and turned in our SUV that was well on its way to SUV heaven and used what we made on that to pay off our  Saturn.  Doesn't that always happen to people?  So 2 new cars in our driveway in a month.  Not exactly what we had planned, but again, let it go!  Life is out of my control.  And I have to learn that.  We discussed in counseling yesterday.  I have to get used to that.  

Other than that little but big mishap, it was a good week.  I started out tired and a little emotional but again, see above.  Justin had a dentist appointment without any cavities and Ryan had his flu shot.  Whitney and Wendy helped out with those.  Thank God for both of them.  They have really allowed Don and I to stay at work as much as possible and do afternoon appointments rather than scheduling around or consuming an evening at the Dr. when I'm so tired!  Oh and shouldn't be sitting in a Pediatric office with low counts!  Speaking of, my counts dropped a little this week.  WBC went to 2.2 from 2.7 and hemoglobin went from 8.6 to 8.4.  This is normal after Carbo, which was last week.  I just hope they start to rise or don't lower more next week.  

Treatment took a little longer today. Started at 1:30 and I think the pharmacy was at lunch so I had to wait around.  They can't mix chemo until you are weighed so I get it, but it is a little annoying.  Whitney met me there for a nice break from little kids to take care of her big sister! Love that she did that for me.   We did talk and catch up without chasing Ryan around, which was probably nice a nice break for her.  She is my "Soldier" (new favorite song from Gavin DeGraw)  This song does not fit completely because it talks about others not being there while she is and that is far from the truth, but love the song and has a good message, but don't take that the wrong way, I have so many Soldiers that I am smiling thinking about it, Just another song to plug!  Maybe this song is old news, but I don't think so.  Soon it will be over played like "Home"!  

Justin completed his first Book It Month at school so after treatment I picked him up and ordered his free pizza and stopped to pick up Madagascar 3 while we waited for the pizza.  So our evening was nice together watching his movie and just relaxing.  He is still loving Kindergarten and is really catching on to the site words!  So cool to watch him learn!  Wendy is going to go this week to help his teacher with some testing.  This is great because she will get to use her principal skills and spy on Justin! Ryan is crawling and has found out he can go from the laying position to sitting on his own this week, He was also caught by Whitney standing up against the couch while she turned around for just a few seconds!  His teeth that I talked about right after I was diagnosed decided to break the skin so you can kind of believe me now that he was and is getting teeth!  Oh and the race is on between he and I.  His hair started growing so quickly all of a sudden, but guess what?!  So did mine!  I have sprouts coming back!  I know it will take awhile before the wig will come off, but 2 weeks ago I asked Don and Whitney to look and they both I think just said they saw it, but didn't.  Now I look like an old man that is balding!  Still super thin and sparse, but it is coming back and taking out the garbage a week or so ago, I felt the wind in it!  So the race is on to see who needs a hair cut first!

Well, it is time to catch up on the DVR and fall asleep!  Roiding it again tonight so may be an early morning for me.  Just to let you know what I did at 2 this morning when I got up was clean out the refrigerator.  How fun does that sound?  It was nice!  It needed it, we cooked up a storm this past week and it was garbage day!

Good night to all and enjoy another weekend!  Prayers appreciated.  No more mishaps for us.  We need a good trouble free worry free week!

Amber

Saturday, October 13, 2012

8 down 4 to go---OH NO!

Good Morning,

Early morning in the Naughton house!  Ryan is not sleeping well these days!  Maybe he assumes I'm up roiding and should keep me company.  What he doesn't understand is this roid time is one of my favorite parts of the week that I look forward to.  I love my kids to death, but to be awake and choose what Amber wants to do is kind of fun!  

This week caught up with me.  Jess was in all weekend and with my girlfriends that came Saturday, I didn't get a lot of extra rest.  This is nobody's fault but my own, but I knew if I laid down they would talk about me:)  So I tried to hang out the best I could.  On Sunday after the walk I did get a nap in and as sisters we just vegged all day.  Monday morning I woke up with every intention to go to work.  I took my nice long shower and while in the shower realized my muscles ached like an older women from the walk.  So I did the quick calculation of what time I would have left if I stayed home.  I know I know, with everything going on, is one day off going to hurt?  And the answer was no!  So I decided to get out of the shower and find the most comfortable lounge wear possible and came downstairs to surprise Jess (my older sister) who had been up with Ryan that I was going to stay home.  I took 2 naps that day and that was when it hit me that staying home to regain my energy and laugh with my sisters what just what I needed.  Justin didn't have Kindergarten, but at 10 decided he wanted to go to day care to see his friends so he was off to play for the day so we only had 1 little one roaming (when I say roaming, I mean it) the house with us!  The rest of my week was smooth.  I felt a tad tired but really refreshed.

Thursday was blood work and they actually called which scared me because I missed the call.  But the message was my hemoglobin has risen to 9 (last week 8) and my WBC are still just hanging at 2.7, but both were good for me to get my double drugs yesterday Carbo and Taxol.  Funny story about blood work....So I will remind you on treatment day I wear a turban, yoga pants and a hooded sweat shirt.  There is no need to dress up when you sit in a recliner and are getting poisoned.  But Thursdays for my blood work I am going on my lunch. So I have my wig on and am dressed in work attire.  Well I had to get a new wig and it came in the mail on Wednesday so Thursday was my first day breaking it in.  It is the same exact wig, but of course just like going to a hair dresser for a hair cut, usually it is a tad different.  My new one is a tad longer than the last and the bangs need broken in so they go to the side like I like to wear them.  I think the cut on my new wigs bangs are a little shorter so they are getting in my face more.  So I was a little nervous about this at work on Thursday because like I told the girl that I got the wig from, I wanted the exact same so no one would notice.  She is wonderful and has a great shop in California called "Lemonade Locks".  I was referred to her from her wonderful aunt and family friend Diana!  I could not thank you enough.  This wig is a hit and I get tons of compliments!  If you know someone in need, I would definitely recommend her, especially if you are in the CA area!!! So back to my story, one of my favorite nurses was doing my blood work and she said "I love your hair" so I think she has noticed the new wig so my response was "yeah, it was time for a hair cut".  She looked at me with such confusion that I realized she has never seen me without a wig since I usually don't see her on Thursday when I'm dressed.  So I decide to play some more.  "My bangs are a little shorter than usual, but they grow so fast, in no time they will be back to where I like them".  HA!  again, still confusion. She finally said, you were a turban on Fridays so I assume that is a wig.  I then came clean and told her it was and explained new so I felt it similar to getting a cut and having to fix your hair.  Okay, maybe not that funny, but it was to me!  

Thursday night I met with my counselor for the first time.  Very nice lady and I think we will do well together.  The first appointment she learned about me, my situation, my family, my support group (she was impressed everyone), my fears, anger, what makes me happy.  She has decided that I should start weekly so I have a standing Thursday evening appointment for now.  I may share some from our talks, but I have decided this is my place to share with her and unless I am comfortable, this will be one of my only private outlets that I have these days so I don't mind if you ask if I'm going, but unless I share, assume things are going well.  

Friday well, I did great with my anxiety until right before my appointment.  It was meeting with the Dr. day.  Dr. Hantel was on vacation so I was meeting with one of his women colleague's who concentrates in breast cancer.  My mind started wondering and I felt like I was being set up.  What if Dr. Hantel told her he can't fix me, can you go in and give me your opinion....I knew this wasn't right, Doctors do take days off right?  Plus, Dr. Hantel is pretty much a straight shooter, I think he would just say his intentions whether I wanted to hear it or not, but this is what my mind does.  It can't be positive all the time.  The new Dr. was great.  She didn't do a breast exam so I have no idea where I am as far as shrinkage.  I do know from self exam, but I am not a good judge and am too hard on myself because I feel it several times a day.  Her thoughts on not doing one was she has never felt it before so she isn't a good judge.  I agreed with that.  I did decide it was not a good appointment for Dr. Hantel to miss because I should only see him 1 more time before surgery and my questions were mounting.  Who is responsible for me after surgery, up until surgery.  What do I need to do to prepare for surgery, what is after surgery and expected of me on follow ups.  Will they communicate with Northwestern, who should contact who.  So while she was able to answer the questions, they were answered "If you were my patient".  I know there follow up is probably pretty standard so I expect what she said will be accurate for me, but she sensed my anxiety I think.  She got me.  She explained that it is normal to be scared for treatment to be coming to an end.  This brought me to tears.  I hate crying there.  But I am so damn scared of not getting chemo.  I went from hating it to loving it.  It helps that it is not hard on me (knock on wood) and that I can manage my day to day, but I long for Friday to get more drugs.  Although it is poison, I need it.  Sick feeling, but she understood that.  So it was nice to get that on the table.  She then told me the dreaded....I knew I wasn't done with this, she explained that I will need a CT, MRI and Bone scan (If I were her patient) before surgery.  I have been waiting and was afraid to ask.  This is the worst 24-48 hours of my life waiting for those results.  But they need to get accurate size for the surgery and to measure just how well and not from touch the tumor has shrunk before surgery.  Also to check that it is still contained.  I am scared to death!  Part of me wants it done now and the other part just wants to wait.  She was going to call Dr. Hantel to get his recommendation.  I don't know what say I will get in it.  But I HATE this thought!  So this caused extra anxiety and thoughts during treatment that I couldn't really concentrate and get through without crying yesterday.  It is a fear like I can not explain and such a sense of relief if the results are in your favor, but what if??  So prayers can be started for this because whether they say next week or 4 weeks from now, it is going to be on my mind and there is only way....I need to hear it has shrunk this much and it is contained!  

I do not know if I have put this out there, but the form of breast cancer I have is called Triple Negative.  It is a non-hormonal form.  Only 20% of young women are diagnosed with this form and of that 15% are African American.  Some that I know that were diagnosed with this form are Robbin Roberts and the late Elizabeth Edwards.  My Dr. and the little research I have done had explained to me my first 2 years after diagnoses are critical.  This is a highly aggressive form and can come back with little to know warning.  After 2 years, I am considered in the "safety zone" up to 5 years and then I am back to being like everyone else.  So this is where my fear stems from.  Unlike a hormone induced breast cancer, there are no known drugs that can be plugged in after treatment to keep the cancer away.  They are doing studies, but NOTHING as we speak.  Hence why diet and exercise HAVE to play a key role in this and my need for chemo.  Chemo is the only thing out there that fights this form currently.  Scary right?  I try to say it is just a name and whether it was a hormonal form or not, I have to fight the same way!  So that is what I try to do, but I hope this better explains my fears of what ifs when I finish up and why I think I have an addiction to poison! 

I'm still reading this wonderful book "I wore lipstick to my Mastectomy".  Anyone that has gone through cancer I think would enjoy.  She was 27 when diagnosed and she has touched on many of my fears so I have highlighted them and will try to go back to them when I have a bad day.  One that I will share is my fear of what if it comes back or if God forbid Gods plan is for me to leave this Earth before I am ready.  Her mother's girlfriend shared with her:
" She explains that since my life now has such a possible ending, it is a wake-up call          that I am mortal, which most people are able to deny.  Most people stay in jobs they hate, marriages that they are miserable, and just postpone joy because they think they have so much time left  to figure it all out.  Her friends advise does not make sense at first, but she is very smart and spiritual and when I start to think about it more I do start to realize that the potential of life is freaking me out.  If this is all there is, my one shot, I need to get it all in fast, no waiting."  I have read this over and over and it is so true.  While I remind myself breast cancer is not a death sentence, it could be, so what am I waiting for.  Get out there and enjoy.  

My aunt Rose Ann has been a weekly e-mail writer to me as well.  She like Geralyn Lucas's mothers friend is very spiritual as well.  She shared with me some hic-ups in her and her husband Brian's life that they have encountered.  Some of the more recent ones, I knew about, but there was one 20 years ago that I think I would have been too young to know.  She explained too that you do get through the days.  This reminded me 20 years ago they were living with the same fears of what if Brian (my uncle) doesn't make it through this bump in the road.  But I look at them and think, wow, I didn't even know about this!  And he is still with us! This put the thought in my mind, I can't wait to be 20-30 years out and have someone approach me and say "Hey, I just heard you fought breast cancer when you were 33" and I can say "why yes I did, it was so long ago, but here was my story".  Next time I see Brian and Rose Ann, I want to know all about what happened 20 years ago.  Even though they have moved on with life and have continued to be a happily married couple that both recently retired and are just living life together, I hope they will share this story with me and more details of how they coped with the days and years and when they were able to put the nightmare behind them enough to move on.  You can't sit in a black hole of what ifs.  I have to live for today.  No one knows their destination!  It is easier said than done, but both of the book and the e-mail came at just the right time.  

So plan one when I am off of house arrest (chemo, surgery and radiation) I am taking my family to Disney.  We have never been and while Justin is a great age, pre-cancer, I thought, I can surely push this off a couple more years so that both boys enjoy it. Well, we are not doing that.  We are going to go to Disney as soon as we know I am able to enjoy it to its fullest.  Spring or summer.  I can't wait to see Justin's smile when we get there and this is what I will focus on for now.  Oh I have several other plans up my sleeve, none involve getting tattoos or sky diving or anything too crazy.  I just want to enjoy my family!

Well, Ryan is roaming and Justin is now awake.  We have soccer and a family event planned later today that I can not speak of because it involves Christmas.  Tomorrow will be just rest and relaxation.  Probably a run to the grocery store but that is it!

Enjoy your weekend and as always, thank you for your prayers and support!

Love to all!

Amber