Super Powers

"You never know how strong you are until being strong is the only choice you have"

I am slowly but surely making my way back from being "under the weather"....Wow, last weeks chemo really kicked me while I was down.  Sister Jess came in last Wednesday night just in time to join me for chemo Thursday.  It was also a special day because Ryan turned the big "2"!  Back up some, I had went Monday through Wednesday last week for a shot in order to get my cells to produce more quickly so my counts would not be too low for the 2nd round of treatment.  Lucky for me, the shots worked from just Monday and Tuesday and Wednesday they just did the blood draw and confirmed chemo was a go!  So Jess and I packed up for chemo Thursday.  I was not the best host as the Benadryl knocks me out.  I did confirm with the nurse that the dose on benadryl is like 4 times higher the dose someone would take on a given night.  Why it is so high, we are not sure....Not even the nurses, they are just following every rule that goes along with this clinical trial.  So off to la la land I went and Jess just read on her Kindle and made friends with the nurses.

Thursday evening we celebrated little Ry Guy's birthday.  With Jess here, she summoned me to the bedroom all day Friday to rest since we were having a small get together on Saturday to celebrate Ryan's birthday with family and friends.  Saturday has been my rough day and this past Saturday was no different.  I was sleepy!  My tiredness did not go away as the weekend progressed.  Jess left and Whitney came in and still no energy.  In fact I was so tired and weak that I was very depressed and spent a lot of time crying.  I hate to put my sadness in my blog because I worry that others will worry about me, but I was really down!  I wanted to spend my time with my sisters here having fun, not putting the entire burden of the children, dinner, dog etc on them.  I tried acupuncture and that didn't really boost me at all either.  In fact, from the teeny tiny needles, I bruised on my hand!  So Wednesday I went for blood work and confirmed my red blood cells were low and I needed a transfusion!

Those local know we were lucky to receive more snow on Tuesday night so when I arrived at the cancer center on Wednesday for a blood draw, the parking lot was not plowed and just walking from my car up to the building (jumping a few snow drifts) I was exhausted!  My heart was beating in my head type of exhausted.  So at first when Dr. Phillips explained the cancer center doesn't do the transfusions and you have to go to the hospital for them so the time and date for the transfusion was out of her hands, she quickly got on the phone and called when I told her how weak I was.  Thank goodness!  She probably doesn't hear me complain enough so when I did, she probably was about to call a code red on me!  The transfusion was painless - not short, but painless!  A transfusion takes around 4-5 hours.  Thank goodness I was so tired, because guess what I did?  You got it - SLEPT!  Slept as I received super powers or as some call it "tiger blood".

Today I woke up feeling refreshed so Whitney, Ryan and I attempted to hit the mall and run some errands.  We were able to do about 1/2 on our list of errands before nap time was calling both Ryan and I.  I napped this afternoon and now I feel good.  I just hope with this boost, my levels will rise enough for chemo to start back up next week.

Tuesday is a dreaded PET scan with results on Thursday before treatment.  In order to stay in the trial, the PET must show that the cancer has not progressed more than 20% and it must show some improvement.  So I am scared of course.  I feel like this chemo is working some, but my skin is still red and I still am medicating every 4 hours.  So I do feel like we need some more time, so I guess my hope is that with this next PET scan, there is some positive results from the chemo and that the cancer has not moved elsewhere.  This part will never get easy for me.  I thought after my last one and getting not so great news was going to be the last time I worried about scans, but that is not the case.  I am scared and know that while we still have other options, we will be picking another one off and that my friends is scary!  So I am trying to concentrate just on today and today, I feel better than I did yesterday so that is a plus, right?

Whitney is here until Saturday and then my parents will tap in as she taps out!  They will be here for a week and will help get me through the dreaded wait of the PET scan and join me for chemo on Thursday.  For anyone that donated to the travel fund or have sent money to my family, we are forever grateful.  It means so much to us to have my sisters and parents here with us through this.  Not only does it give Don and I a break, it gives them the peace of mind they need to see me in person to see the "real Amber".  Over the phone or FaceTime does not do us justice.  I need them and they need me.  So thank you!  To my local family and friends, you are not forgotten!  We have received an outpouring of support around here.  Helping with the kids, food, snacks, etc.  You guys help to make our day to day continue like nothing is wrong, so thank you!

Prayers for this next week for my PET Scan results to be positive, my energy to continue to replenish and for my family as they travel in and out.

Love to all,

Amber

Chemo Round 2 cycle 1

Hello!  We are hanging in there!  I slept through treatment again on Thursday.  I must be the easiest patient there is.  Give me my Benadryl and I'm out like a light.  Wendy had Ryan during chemo on Thursday and when he woke up from a nap, he was running a fever.  Being extra careful, we decided it was best if he went to spend the night with nana Naughton until we could get him into the doctor on Friday.  Friday I woke up feeling good (I usually do the day after treatment) So I ran some errands.  Ryan's appointment didn't go like I wanted.  I wanted to hear he had an ear infection and was not contagious, but we were told he had a virus and both his doctor and my doctor both felt it was better if he was not around me until he was fever free for 48 hours.  This of course made me sad and think again how much my life stinks at times! Don went to his parents and stayed with Ryan last night while Justin and I held the fort down here with Kaner!  I felt great until about 9 this morning and then the fatigue hit.  So I slept from about 9:30 until 2.  Waking up, I was in pain due to not taking my pain medicine so I took that and then had to lay down some more.  Now I feel just okay.  Hoping tomorrow is better!

Ryan has been fever free since last night so hopefully we can bring him home tomorrow.  I am so appreciative for Don and Wendy to take him without really any notice.  I also love that he doesn't care that he is away from us and is having fun and is in great hands.  Thank you nana and papa Naughton! His birthday is Thursday so he needs to be well for that.  Not much more to update here.  Just good thoughts and prayers to re-gain energy and for my levels to stay up.  Oh, I guess one more thing.  So this cycle I did have another high dose of carbo and the plan is for me to go in Monday - Wednesday this week for a shot that will hopefully keep my levels up.  We shall see!  So positive thoughts and prayers for that!

Off to relax and hopefully going to bed soon!  I feel like such an old lady!

Amber

P.S. Triple Negative Breast Cancer Day is Monday, March 3rd.  There is a good site on Facebook for this and it talks about how every 30 minutes someone new is diagnosed with Triple Negative.  I wish they would find the right medicine for this!  Go to Facebook under Triple Negative Breast Cancer Foundation for more information!  Stop and think about us though on Monday.  It is really scary and sad to think about this!

Garrison Get Away 2014

For those on Facebook, myself along with my siblings probably did a good job blowing up your news feeds with pictures of our trip!  For those who are not Facebookers you missed out but I will post some pictures here as well!  This past weekend the Garrison's met in Asheville, NC for a much needed "Garrison Get away, 2014"  We left Thursday and returned yesterday.  I flew out of O'Hare and met Jessica who had a connection from Reno in Chicago.  Driving to the airport on Thursday our take off did not look promising.  It took me an hour and a half to get to O'Hare and it was not due to traffic, it was due to horrible fog.  Once I arrived and parked, the fog started to lift, but that is when the rain and wind started.  After finding my gate (that is a blog entry in itself) I sat next to a gentleman who told me he was trying to get to Oklahoma for the past 4 hours but his flight was cancelled due to weather.  He also told me that the plane he was supposed to be on was diverted to Indy due to the weather.  I started to panic that Jess would be sent to Indy as well, but soon this nice gentleman tapped me on the shoulder to tell me that someone was starring at me and waving.  I look up and it was JESS!  We moved from gate to gate as they kept updating a new gate for our flight.  We were a 1/2 hour delayed but we took off with the caution from the flight attendant that this was going to be a bumpy ride. Good thing she warned us!  Jess made a great point, seeing so many flights cancelled or delayed was the best sign from above that our family needed this time.

Friday we visited the Biltmore which is amazing and I have picked out a stunning bedroom for myself, we followed this by a wine tour at the Biltmore and then finally a stop at a hotel for fancy drinks and a beautiful view of the mountains!  We then took a short rest before going to dinner and listening to live music.  Saturday we went to Whitney's favorite brunch location, which looked to me like "E-coli on a stick" (a hole in the wall restaurant) but I ate my words after we ate there!  The food was excellent!  Hats off to the chef on that one Whitney Garrison!  We then did our version of hiking - driving up the mountains and stopping at a look out point to get pictures.  This is where I surprised the family with a Jimmy Buffet Parrot Head hat that I found in Whitney's room.  Right before pictures I put it on!  We all had a great laugh at this!  The real hikers that took our pictures didn't seem to get it and some of you might not either - we were born and raised on Jimmy Buffet music thanks to our dad!  And to add to that, for those that did not know, Saturday was National Margarita day so it seemed fitting.  After our hike, we did a wardrobe change and headed to downtown Asheville.  We went to several shops and then did a comedy bus tour of Asheville.  The comedian was excellent and our faces hurt from laughing so hard!  Anyone wanting a nice place to visit should go to Asheville!  It is a wonderful city!  I hope to return for Whitney's graduation for another free stay at her apartment before she moves!

Parrot Head 

Biltmore House

Not a lot scares me these days!

Beautiful colors and view!

On the cancer front, I am in a lot of pain and would appreciate the prayers for this!  I was able to enjoy the weekend, but did not sleep well due to taking pain medication which makes me itch.  I itch and then that hurts so I medicate and then itch again!  It is a vicious cycle!  This makes me so angry and also sad because we all know it is the evil cancer making me have this pain!  So I am anxiously awaiting Thursday so I can be poisoned with chemo!  I just hope with the chemo my levels cooperate this time and that I can stay away from germs.  I also hope it will take away some of the pain or we can find a different way to manage it.  At times I feel like it is worse than contractions during birth.  No joke - it is pretty intense!  At least with child birth you get a cute little baby out of it….

With March approaching we have a crazy busy schedule.  All fun of course!  First, Ryan will celebrate his 2nd birthday on the 6th.  Jess comes in March 5-9, Whitney 9-16 and mom and dad 16-23….Although it will be nice to have company and a distraction.  I also will have chemo and a CT scan to check the progress of the trial.  So I will be extra anxious.  Hopefully we are back on track this week and the scans reveal we are on the right track.  Prayers are much appreciated!

Love to all!

Amber

Cycle 2 - Take 1

"We didn't realize we were making memories, we just knew we were having fun!"

I showed up Thursday for chemo ready to play!  Not really, I was actually still feeling a bit weak and fatigued, but I showed up and that was all that mattered.  I told my nurse I was going to enjoy my spa day by watching Good Morning America, sitting in my heated and massaging chair and reading my book on Yorkie Poos (will fill you in below)  We did my blood draw, I took my trial pill like a good girl and then waited.  You have to wait for your blood work to come back before starting chemo.  Soon Dr. Phillips came in and told me spa day would be cut short.  And yes, she called it spa day….Seems like the nurse must of told her my plans:)  My ANC count was at 520 and to be treated it had to be over 750.  For those of you that didn't take classes to become a Dr or nurse ANC means:Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.  
So Dr. Phillips thought it was best not to go forward with treatment and instead send me home with an antibiotic just in case I got sick.  Very nice of her, but another medication?  Another fear since we had a family get away planned for later that afternoon?  

So now I am on a 2 week hiatus awaiting cycle 2.  I asked if I came back Monday after giving my counts a pep talk could we try round 2 of cycle 1 and the response was no.  Basically if you can't do chemo, you just keep the same schedule.  She did explain to me that she gave me a higher than usual dose of carbo due to the Triple Negative so that may be why it is taking longer for my counts to come back.  I don't know why these doctors don't realize that doing this is really nice because their intentions are right (to try to kill the cancer) but this is not the first time they think I'm invincible….Remember last year round one of carbo, I ended up with a transfusion…..Her plan for cycle 2 is to give me the same dosage of carbo because it seems to be working and then going forward if my counts don't rebound fast enough, rather than canceling the cycle, she will dial back the carbo.  From her looking at my skin, I did get a good reaction out of her.  She felt the skin was definitely lighter.  I have noticed that while I still have pain and am medicating every 4 hours, I have been able to get to the 4 hour mark rather than crying and pleading for the last hour to end.  I also have noticed my collar bone lymph node is smaller.

I was not pleased about this and in fact I cried to her that all the hard work from last week is down the drain.  2 weeks waiting for another dose of chemo is agony and the cancer is not gone.  She agreed it was not the best case scenario but reminded me that with my counts so low, the chemo had to of killed some of that cancer.  She also explained if I had chemo, she was sure I would be in the hospital by the weekend with my levels.  So the smart thing to do is wait….February 27th is cycle 2 round 1.  

We escaped to Wisconsin Dells for the weekend for some indoor water park fun!  Justin has a 4 day weekend so we left Thursday afternoon and got home this afternoon.  The kids had so much fun and Don and I did too.  It was great to get away and just be normal.  Again I was doing things that I don't think many stage 4 patients do so that always makes me smile and pat myself on the back.  I climbed a million stairs to do a fun slide (by myself since Justin was being a chicken)  I reached the top and while I could feel my heart beat in my head and was winded, I still smiled because I did it….all while carrying a tube!  I held Ryan in a pool with a life jacket on while he tried to play basketball, soccer, monkey in the middle, etc.  Yes, I was wiped out, but I DID IT!!!!  There were times that I honestly forgot I had cancer.  

So we have decided to add an addition to the family.  We have had Dave the fish for a few weeks and he is great, but he just swims and doesn't really do much for us.  I mean we love Dave and take great care of him, but he just wasn't cutting it so we have decided we are going to adopt a yorkie poo puppy!  We put the deposit down a few weeks ago and today stopped to visit him since he was on the way home from the Dells.  He is 7 weeks and we can pick him up after 8 weeks so the plan is for me and my sister in law Lauren to go get him on Tuesday the 25th.  I can't wait.  Ryan was super excited!  Justin was excited but a little timid.  I know as time goes by he will fall in love with him.  We all instantly lit up when we held and played with him today.  I do believe while we may be crazy for adding another stress to our lives, he will be the perfect distraction too.  

This coming weekend will be our first Garrison vacation.  By that I mean mom, dad, Whitney and Jess.  We will be meeting at Whitney's in Asheville, NC.  We leave Thursday and come home Sunday.  It will be nice because Jess is flying from Reno and I will hook up with her at her connection in Chicago to fly to Asheville.  I am so excited.  It will be nice to get away with my family.  I will miss Don and the boys, but I NEED A BREAK!  Don can have the following weekend for anyone that wants him!  But next weekend is all mine!

Thank you again for the prayers and thoughts!  I appreciate them so much!  Our travel fund continues to grow which warms my heart and my month of March since it is already filled with weekly visits from family!!  On behalf of my family, we are forever grateful!  

Love, 

Amber

Chemo - Round 1

"At the end of the day, all you need is hope and strength.  Hope that it will get better and strength to hold on until it does"

Chemo started Thursday.  Being in a clinical trial, I have learned that I am going to have to just roll with the punches more.  Stinks for me since I like a plan, but that didn't seem how it was going last week.  Monday I had to go to the Cancer Center for a blood draw.  Some might ask, weren't you just there on Friday for your preliminary blood work and the answer is yes...I think everyone enjoys a $50.00 copay and they think this is hilarious - us not so much.  There is one blood draw that has to be drawn between 8-9 am.  So Monday morning (day after the super bowl - good thing I was not drinking the night before) with Ryan and Justin in tow, we headed off for this quick blood draw.  Apparently Dr. Phillips didn't put the orders in, or the other side was the phlebotimist didn't know what color of cap to put on the blood draw, it was delayed.  So the Justin was sitting still, but Ryan was touching everything in site and this was really irritating to me because he is over a cold, but his cough sounds horrendous.  So the gentleman in the waiting room I could tell was not amused.  So I was following him around picking up everything he touched.  Good news is, I'm glad that Dr. Phillips and the nurses met my sons.  In fact Dr. Phillips made a comment like oh they are so cute and I responded with "yes they are my life".  Maybe her seeing my little beauties, we won't have anymore careless mistakes.  Nope, then I am told I need to come back Wednesday morning to get the trial pill to take in the presence of the trial coordinator and nurse.  Because the drug is covered under the trial, it isn't something that can be picked up at Walgreens.  I don't get the sacredness of it, I highly doubt I will slip it in someones drink or not take it.  But whatever, I show up with Ryan after dropping Justin off at school only to find out that it had not arrived yet from the Hyde Park office.  I'm not sure if it needed a police escort or what.  So I was not amused, it had snowed the night before and a phone call to say don't come would have been nice.  Side note, I was smiling on my way through the parking lot carrying my 25 pound little boy with the wind blowing and snow hitting us both in the face.  Take that cancer - I'm still able to do everything normal people can do!  Now back to it, so around noon the coordinator called and said the pills were in.  So off we went to take the pill and head back home.

Thursday morning I reported to my chemo chair at 9:00 am.  This being a new Cancer Center, I was a bit intimidated. Most chemo chairs were in private rooms with only about 6 being out with other people.  At Edwards Cancer Center I preferred to be on the floor, because I was not "sick".  But I went to a room and I felt that some that came after me that had to sit on the floor in their chairs felt like I had not earned my keep yet.  Oh well, I will be staying in a room as much as possible.  The chairs recline, they massage, they are heated, they have a TV attached to them.  I told the nurse they better not advertise or more people will want to get in there!  Yeah right!  So I have decided to try chemo without a port.  These drugs are not as dangerous should they go outside of my vein on accident.  The problem is, because of the lymph node removal in my right arm, I can't have blood draws or pressure checks with that arm.  So please root on my left arm that the veins can keep up!

Last year I worked through chemo and didn't let the side effects get to me during treatment.  Well with nothing but pinterest and facebook, as soon as I had my benedryl (used in case you have an allergic reaction to any drugs) I was out-probably had something to do with the heated seat too!  It was awesome.  Next thing I knew, I was being woken up and told to go home!  I came home and slept most of the afternoon.  Friday I was on my own with Ryan and did fine.  I was a little uneasy because I didn't have the distraction of work to keep my mind off of things.  Well the man upstairs must of felt my anxiety, because as I was leaving to take Justin to school, the church called and wanted to know if I could work on a project for them.  So I dropped Justin off and picked up my tasks from church and came home and played with Ryan and worked on stapling 120 packets together for the church.  He knew I needed something - Thank you God!  I ended up sleeping when Ryan napped and took Justin  to a school event last night.  During the night last night I woke up sweating to death and felt really sick but was fine this morning just tired.  I slept all afternoon and then played with the boys and feel great so I'm hoping that is it for this cycle. Round 2 is Thursday and then a week off.

The kids are doing okay.  I enjoy quiet time rocking Ryan to sleep.  Probably not the best habit, but this is my only time with him where he will sit still and I can either sing (he likes it so don't judge) to him or just think and pray while he dozes off.  Then Justin lays in bed with me and lately he has been asking some tough questions so that has been difficult, but in a way it makes me feel good to have that time with him and to answer the hard questions.  One question was if I knew anyone else that has had breast cancer 3 times (he says 3 times because he must think it left and is now back again).  I asked him why he asked that question and he said if someone else did before me, that would mean I will be okay because cancer can kill you.  He also told me that family is the most important thing and I agreed and he said but right now with your cancer, you are the most important thing.  I cried to him and told him that someday he will make the best husband, friend and daddy.  He has such a big heart and has so much on his plate.  I wish he could just worry about what other 6 year olds worry about.  Sad thing is, some of them might worry about losing their parents, but don't talk about it because they don't have such a scary thing in their face all the time like we do.  He is in counseling through the school and we will see how a few sessions go and see if he needs more.  Keep that little boy in your prayers!

My friend Megan and Linda have put together a funding that will help my sisters fly in when they want to or need to.  I am shocked that in the 2 days it has been up on Facebook, the outpouring of support we have received.  I now realize that growing up in a small town and keeping small town friends has helped us so much.  Not only my small town folks, but also my Garrison / Freeland and Naughton / Pondelicek family and friends up here.  I am not posting this for more money (believe me, we are off to a great start), but I have added it here for those that are not on Facebook.  I don't like to leave anyone out!  It is hard to ask for things and Don and I have been fortunate to have the financial support we need and assistance with kids, but as I have said before, this is hurting them just as much - especially because they are so far away and feel so helpless at times.

Also for those not on facebook, I have a new song, which I have also copied to here.  It has been a big hit on Facebook with my friends that have listened to it, so it is below for you all non-facebookers as well!

Well, I hate to over do it so I'm off to bed in hopes that I feel well enough in the morning to attend church and the grocery store.

Love you all!

Amber

Click here to support Amber Garrison Naughton Travel Fund by Megan Jeremy Deckwww.gofundme.comSo many people have asked what they can do at this time to help Amber Garrison Naughton while she goes through her...

Bomshel-Fight Like A Girl Lyricswww.youtube.com***I DO NOT OWN THIS SONG! NONE! ZIPPO!*** Fight Like A Girl BY!!! Bomshell I decided since it was a hard song to find i put it with lyrics. I am taking requ...

PET Results

"I am learning to trust the journey even when I do not understand it"

This was a quote I found today and I think it pretty much suits my current situation.  I had my PET scan last Tuesday.  If you remember from a year ago, I am always looking for signs.  Well, Tuesday I got a positive sign after the scan.  I had the day to myself thanks to my mother-in-law for watching Ryan since I was radioactive and had strict instructions not to hold him, hug him, swap spit with him, urinate on him, etc.  So after the scan I decided to venture over to Walmart for some groceries.  I am not a Walmart person, but we had a gift card from some Christmas returns so I figured I would use the card on groceries.  As I was shopping, I ran into Pastor Dave from the Lutheran church I have joined.  I am a new member to the church and most there do not know about the cancer, but he does.  So we chatted for a bit and after I walked away, I was so giddy!  It just felt right.  I felt that this was my sign that everything was going to be A-Okay!  Wednesday my parents came in to help with the kids and to keep my mind busy.  That was very helpful since I do not do good waiting for a Christmas surprise, let alone waiting for sentencing.  (I have decided that waiting for PET scan results must be what it is like for a convicted murderer to hear their prison sentence)

Don and I met with Dr. Phillips Friday evening.  Note to self, make an early morning appointment going forward....Anyhow, she came in and informed us that my PET scan was not that different than my one in August, but there were some changes.  My right breast was showing lit up, which it did not in August because I discovered the cancer was back pretty quickly.  So I was expecting to hear this - also because that is where the pain is so this made sense.  She then told us that there are 2 lymph nodes around my lungs that are showing cancer.  She did say that the 2 small spots that they saw on my lungs back in August were not lit up, so it is safe to say that if that was cancer, the Xeloda wiped those out.  Or it could just confirm that they are / were scar tissue from radiation.  Next she informed us that there was also a "hot spot" on my left hip bone.  Dr. Phillips said this spot is so small I would not know it was there by pain or any other symptoms.  So that is under "watch", but was not determined to be cancer in my bones at this time.  Don and I went over the actual scan and saw the spots she was speaking of, which I think was helpful to us to know exactly where she was talking about.  I asked Dr. Phillips what this exactly means as far as my prognosis and if this is considered "bad news"- it is to me, but I wanted to know / hear from her, it could be worse.  She explained that it is not in my liver, lungs, spleen or other organ so that is good and that there are plenty of other drugs out there for us to try.

We then discussed potential drugs for me to go to next.  Xeloda was very easy for me.  Not only could I tolerate it, I also was able to stay out of the hospital / cancer center as much as possible and I could hide the illness from outsiders.  So she started by telling me, the convenience is now out the door as we move on and so is the slim to no side effects.  Her and Dr. Nanda (Triple negative expert at the main University of Chicago Hospital) felt that a trial that has one open spot looked like the best option for me.  The trial consists of 2 drugs by IV given weekly - Gemcitabine and Carboplatin.  I have been on Carboplatin before and handled it fairly well minus the blood transfusion I needed after my first cycle.  The third drug is an oral medicine which is the drug that is under a clinical trial.  It is called Mifepristone.  This is taken on day 1 and day 8 of each cycle.  A cycle is 2 weeks on and 1 week off.  So going to the hospital once a week for 2 weeks for the first 2 drugs and then a rest of 1 week.  The IV drugs are known drugs for Stage 4 breast cancer and specifically Triple Negative.  The oral medicine is under trial to find the safest dose when given with the other 2 drugs.  It is an approved drug by the FDA, just is not proven to be a drug used for breast cancer.  So my consenting to the trial, I will receive the oral drug, I just do not know the dosage amount that I will receive until I start.  Sounds a bit scary, but she stated we can make adjustments if we need to so their plan is not to cause me to OD.

Obviously this is not the news we were hoping or praying for and I have sunken into a depression of some sort, but I have not given up.  I'm sad because I can no longer shelter Justin from what is going on.  I will lose my hair, which makes it obvious to him and everyone else that I see at play groups, church, Justin's school, the grocery store or even myself that I am sick.  But mostly for Justin.  Ryan is still little enough to hopefully not realize anything, but Justin gets it.  So if you see him out and about, a smile, a hug or a sucker would be nice!  We also have him seeing a social worker at school.  Since this isn't my first bout with serious news, I keep reminding myself that the beginning is always the hardest part.  There are so many unknowns with how much, how often, what do we need, what if this, what if that, etc.  Then once I start going I get out of my funk and can usually keep up with the day to day.  So my hope is this funk is short lived and I can get moving as soon as possible.

Tomorrow I should hear from the clinical trial coordinator to consent to the trial and will then hopefully hear when I can start.  Some trials require a "wash out" period.  This means being off of all drugs for a certain period before you start the trial.  I'm hoping this is not the case and I can get this going, but if not, I will do my best to enjoy the next couple of weeks.  I appreciate all of the kind words, cards, texts etc.  It helps to keep going when you know you have so many caring supporters out there!  As far as what we need - I do not know right now, I'm finding it hard enough to figure out dinner!  I know we will need help with the kids and possibly meals on my crummy days with chemo, but until I start, I do not know when or if I will have crummy days so for now, keep your phone on:)

We can not thank you all enough for your support and prayers.  Please keep them coming!

Love,

Amber

SCANS!

The holidays have come and went and I think I am still catching up on things around here.  Doesn't help that since I am home, I catch myself a lot saying "I will do that tomorrow".  But all with a good reason why I didn't do it today....Justin was home due to the weather last week and then also due to a case of bronchitis for even longer when school did start back up  Whitney has been here and was to leave last Tuesday but due to the weather she stayed until Wednesday.  Thank goodness since Justin was sick.  It was nice to have 2 of us here to keep the kids from each other.  So far so good, Ryan has not gotten it.  (Knock on wood)

I know a lot of people around here did not particularly like the cold weather and blizzard conditions last week.  I on the other hand, thought it was wonderful!  I had no place to go so let it snow.  I know if I worked I would have been just as angry as the rest of you that had to get out or worse yet, had to get their children out.  But for me, It was extra time with Justin and extra time with Whitney!  

On the health front, I am still on Xeloda.  I have finally discovered that I am not immune to the side effects of the drug.  One was red feet and hands.  This is my rest week on chemo and I think that is a good thing!  Yesterday when walking I had some pain in my right foot and when I took my sock off I discovered that along my heel,the skin is cracked and in one area it was completely cut open.  My hands are doing okay, although they tingle and around my cuticles they are peeling.  So hopefully this week being off of chemo, it will be just enough time to heal before I start back up next Sunday.

I did see Dr. Phillips on Tuesday.  I think I was extra emotional with the holidays being over and Whitney getting ready to leave.  I cried through out my appointment.  I couldn't mask the fear and anxiety I am experiencing with my pain.  No one can seem to explain it or understand when I explain the feeling to them.  I know I have had bad luck these past couple of years, but I don't think it has been that bad, that I have a cancer pain that no one can fix.  I did visit plastics before Christmas and their recommendation was doing a surgery where they would graft skin off of my back and attach it to my breast area to allow for more space for my implant.  They felt there was a 50/50 chance that my pain could be from my damaged skin from radiation.  This risk I have known since I had my implants and there is not a dead line of when if you don't feel pain, you are considered in the safety zone.  I didn't like their answer since 50/50 isn't huge odds and to undergo a surgery that may do nothing for me....yeah no thanks.  So meeting with Dr. Phillips I asked what she thought about this and she explained she did not feel comfortable with me doing this.  With skin grafts you are at risk of infection and even though I feel good, I am extra susceptible to infection and I would also have to stop chemo for some time to do this surgery.  So that brought on the tears.  Even though I had determined on my own the surgery was probably not for me, her saying it and not offering any further resolution to stopping my pain, plain pissed me off!  So she came up with the plan to do another scan.  It has been 6 months since my last one so it is time, but also to help my anxiety to make sure we are still on the right path as far as chemo goes.  Of course this brings on more anxiety than I have originally had.  So scans are scheduled for next Tuesday the 21st and an appointment with her is scheduled for next Friday, 1/24 at 4:20.  So I ask for extra prayers throughout these next 2 weeks.  

I am on edge.  I feel like as scans approach you start to put your life on hold.  So much weighs on the results.  Will I be able to continue my plan to have Ryan involved in activities daily if I for some reason need to start a different chemo?  Can I dye my hair or is that a waste of money?  And from following another stage 4 breast cancer pal, "Can I continue to buy the green bananas".  When I saw this I originally though oh how morbid, but it is the truth as I wait for the scan. I hate to go there and I know you all hate to read it ,but I have to prepare myself because my future rides on the scans.  I can still control my mood, my mind, and emotions, but I can not take back what the scans could reveal.   So mom and dad have graciously agreed to come see me next week.  With the scans being Tuesday and no results to Friday, I need them here to keep me busy and to keep the kids busy.  I don't know that I am the best mommy when I am waiting for test results.  I kind of go into a daze and just go through the motions.  So they will come in Wednesday night and stay until Sunday.

Lastly, I have started acupuncture!  I did my first treatment on Saturday and I am in love!  The lady I am seeing is so knowledgeable and spent a lot of time explaining things to me before sticking me with needles.  I fell asleep during the treatment and slept better than I have in years.  I have to say I will be having a twice a week affair with acupuncture!  It is pricey, but if it can rid me of some of this pain or better yet, rid me of cancer, I will pay what I have to!  

So if you can please please please keep me in your prayers these next few weeks.  I could definitely use them.  And please also pray for a little boy Mason Whitaker.  He is the nephew to my friend Megan.  He is 1 1/2 and was diagnosed with leukemia last week.  He is being treated in St. Louis and is in great hands, but has started down a long road along with his family.  They do have a blog under caringbridge.org under his first and last name or you can find their page on Facebook under Prayers for Mason.  

Love to all!

Amber