NC Trip

Wow, you all know how to make a girl feel special on her birthday.  Whomever thought of the perfect idea of sending me cards on my birthday, you are AWESOME!  So unexpected!  They keep coming in and I don't know what I am going to do when I go back to the mailbox and only find the bills and junk mail!  What a great idea!  Thank you to the card fairy who remains anonymous at this point!  My birthday was super!  Don woke us up before he left for work and we had donuts, mine with candles.  After Justin was off to school and Wendy came to take Ryan to his 2 year well check -Just another small thing that a cancer patient shouldn't do since it involves going in to a facility that has more germs than those found on an elevator button I'm sure, I left for the airport.  My flight was on time, I popped an Ativin  before take off and slept like a baby the entire way there.  Once landed, the plan was for me to take the hotel shuttle over to the hotel and meet mom and dad there.  Small mishap on my part, after checking the confirmation for the hotel over and over to ensure I got on the right shuttle, I got on the wrong one.  But funny thing is, traveling without hair has some perks.  The nice gentleman was kind enough to bring me to his competitors location.  Yeah, I felt bad about it, but I'm sure it happens all the time.  Mom and Dad arrived shortly after I did and we headed to Sullivans Steak House in Raleigh.  Great service and great food!  Mom and I had steaks and dad the fish.  After dinner, they came with a HUGE piece of strawberry cheesecake with candles.  BONUS-I got to make yet another birthday wish!  One will never tell what the wishes were:)  We really didn't plan to have cheesecake because Whitney had ordered 3 special cup cakes for us to share.  Oh well, you live once right?

Naughton Birthday dinner

My cards:)

Garrison Birthday dinner

Wednesday morning we were not in a big hurry to get up and get going since my appointment was not until 11:00.  So we slept in and then the 3 of us passed around the 3 different flavored cupcakes.  Breakfast of champions, but we couldn't let them go to waste and it was my birthday!!  We left and headed to the Chapel Hill Cancer Center around 10:00.  It was great to have mom and dad with me for the day.  Them living away, they hear the details of my appointments, but I know how badly they want to be there.  First stop was registration.  That went smoothly and we were escorted to the waiting room. The staff was more than helpful and friendly.  Some also reminded me what good hands I was in with Dr. Carey so that made us feel good.  We were informed that Dr. Carey was running a bit behind and that update helped us since I had planned to fly back that day.  When we were put in a room, there was a nice couch in the room for me and my parents to fit nicely and still they kept us updated on the delay and offered us food and water.  So this facility is top notch - not many places have nurses that double as waitresses.  

First I met with a nurse practitioner who was probably about my age.  She came in with my book of previous Dr. notes and orders.  She had 2 pieces of paper and asked that I bare with her as she went over everything.  I was so impressed that she had everything right!  They had only received my entire file the Friday before so she really did her homework.  Side note - remember my trip to NY about a year ago when I showed interest in a trial.  I was only expecting a nightmare like that so even if she missed something, I didn't notice.  She impressed us all.  So back to yesterday, she mentioned to me that they had discussed my case at their board meeting that morning and wanted to know if I could stick around yesterday to also meet with a geneticist.  I was so impressed that they cared so much about my case to talk about me at their meeting that I would have stayed a week if they asked.  So at that point, we pushed my flight back (another topic for another day if US and AA don't get their act together and respond to my e-mail).  

Next Dr. Carey came in and returned with the nurse practitioner who seconded as a court reporter as she typed pretty much word for word the conversation between Dr. Carey and me and my parents.  She did an exam and then had me get dressed so we could talk.  Dr. Carey first explained the tough part that I hate hearing which is: We are not looking to cure me, we are looking at finding the right drugs to keep this disease from spreading any further.  Yes, that sucks, but it was not anything we didn't know.  I explained to Dr. Carey that I am looking to live as long as I can, but also be able to have a good quality of life.  I did tell her if there was a drug that I could take while sitting in the hospital on my death bed for 2 months, I would take it if I would be cured, but if not, I am looking for good quality of life and to live as long as possible.  She agreed with that, that I am on the right drug for now.  She also went over drugs she would recommend down the road should this one stop working.  She also talked with us in regards to a few trials.  None of which I could participate in through University of Chicago at this time, but since we just started this drug, she didn't recommend we stop this drug and move to a trial at this point.  Also since I visited there, she will keep me in mind should they start any trials in the future that I may be eligible for.  Next she asked me about Justin.  I explained to her that we are very open with him and she was happy about that.  She did inform us that sometimes a child can think they caused this to happen so we have to continue to make sure we answer his questions and let him in on as much as he needs or asks.  

Her next question was me and Don.  I informed her we are hanging in there, but times are tough.  We are stressed to the max and neither of us are good about asking for help.  We would rather be the ones giving than receiving.  She did a good job beating on me (in a way that I could handle it) to let me know that we have to take this help in order for me to fight cancer.  I agreed and my goal is to try harder at taking you all up on dinners, help with the kids, etc.  I'm going to say this in a way that hopefully does not come off harsh.  There are times I am not up for company, I either do not feel good, I'm sad, I don't want to talk, I just want to lay in sweat pants on the couch, my excuses for blocking you out go on and on.  It is in no way a reflection of you.  It is just that.  And while most of you have kids my kids age and it is great to get the kids together, having kids in the house sometimes adds to my anxiety about germs, about craziness that kids cause and well….it is just overwhelming.  So no, this is not my way of saying you aren't invited, it is just overwhelming when someone says "Can I bring dinner".  Because my mind blows it up into something it probably isn't - my mind says it turns into a full day of entertaining you and providing fun and games for your kids and mine and staying awake and entertaining when deep down, I know that is not what it is, but damn it, cancer is overwhelming!!!  So please don't give up on us.  Don is always up for company and I know I suck so don't blame him, blame me!  So that was that, I am not super woman and I will stop trying to be.  We enjoy any pasta, Mexican, casserole, etc or take out:)

Outside the cancer center before appointment

Sorry if this is post seems long, it is not even close to being over.  I added another picture so you could grab some water and take a look at my cool new hair.  By the way, Dr. Carey complemented my well shaped melon.  Okay, back to the story: Next she asked what questions I have and I asked her about diet and exercise.  I told her I have read all about how sugar feeds the cancer and she interrupted me and quickly said "Who told you that, Dr. Nanda?  Dr. Phillips? Dr. Hantel?, I certainly didn't tell you that".  I thought this was funny because while she was being a smart you know what, it was so nice to finally hear someone say to not go hog wild, but stop beating myself up about what food I ingest when sometimes a nice Pepsi and a bagel sounds better than a freshly juiced glass of Kale, Carrots and a small amount of fruit since fruit has natural sugar in it.  So I will still watch my diet, but I won't try to follow it so closely that I sometimes think after a cheeseburger that I can feel the cancer growing while it is being ingested.  Again I will mention that cancer is over whelming!

So long story short, her goal and mine is to stop taking blame for this cancer.  I did not cause it to happen, I am doing everything I can to fight it, I am seeing every specialist possible to stay in charge and whether the cancer stays in my lymph nodes or travels further, I am not expiring anytime soon.  

Following her visit I met with what I will call Genetic engineer #1.  She came in and went over a lot of what the genetic counselor from Edwards did a year ago when we did the BRAC testing.  (I was negative which means no one in my family is at a higher risk of developing cancer) After going over my healthy family history she didn't recommend any further genetic tests, but didn't want to cross that off without having her colleague come in and give his opinion (Again, we received the red carpet and felt so loved and important)  Next Genetic engineer #2 came in and spoke with us and after speaking he too agreed no further testing is necessary, but wants me to follow up with him via email if anything were to pop up or in a year in case something new on their end is discovered.  

The last step was meeting with a clinical coordinator in regards to a test (pardon me, I forget the name) that would take a sample of my tumor and a sample of my blood and have my genetic make up reviewed to see if it can pin point any targeted therapies that might work for me.  The bad news with this is, they are usually only 5% successful in finding a targeted therapy with this test.  But since it is a trial, it will not be charged to my insurance company and since I have had my tumor checked for 2 different things that it has failed to suppress, maybe this is the 1 thing that will give us some good news.  I mean, enough bad news is enough so maybe just maybe this is it!  This test can take 3-4 months for results so stay tuned!

After this, we were 5 hours in.  So off to get some food and to the airport we went.  It was a great visit with my parents.  While we shared tons of tears, we also shared tons of laughter and like I said 12 pages back, it was great to have them tag along and witness first hand what Don and I go through almost weekly.  So kudos to them!  So home sweet home.  Back to see Dr. Phillips tomorrow for a check up.  I am expecting blood work and probably just a quick check up.  Scans will be done after 2 more cycles.  I feel good as far as my energy.  Pain was minimized some, but today has been giving me trouble.  I'm chalking it up to traveling since these past few weeks I have almost felt a lift on the pain front.

Lastly, those on Facebook have probably seen this site called "www.cancercankissit.org".  This is a website and benefit that is being put on by friends and family of Don and I.  We are completely amazed at our family and friends around here.  Again, we hate to ask for help, but we get everyone loves us and everyone wants to help.  So this wonderful benefit will be held on May 4.  Please check out the website and if you can make it, we would love to see you there.  Looks like tons of entertainment, games, drinks, raffles and donated items to bid on or buy.  We would love to see you there.  If you have questions in regards to it, please see the flyer for people to contact or you can reach out to Don or I and we can get you to the right people.  

Thank you for the continued prayers and support.  We can feel it, keep them coming!

Lots of Love,

Amber

Update and Prayer Request

Well I have been putting off my blog for a couple of reasons.  One, I'm exhausted and two, I really don't know how to put into words how I am feeling. My PET scan was Tuesday and while I was not overly confident, I was not letting it bother me.  It could have been because I was still feeling a bit exhausted from my previous chemo round and that my parents were here and we were busy researching some fun things that did not involve cancer.  It is still a family secret I believe so I can not disclose our research at this time:)  If you know already, consider yourself special!!

Thursday we unfortunately did  not receive the news we were hoping for.  After only 3 cycles of on this trial, we learned that this stupid cancer decided to set up shop in a new lymph node in my lung / chest wall.  I had wondered if there was something going on as I was having some pain in this area, but from the previous scan knowing there was already a node close to there, it made sense to believe it was the chemo knocking out that cancerous node.  Nope, that wasn't what it was.  It was very emotional for Don and I to find this out.  Dr. Phillips gave us the news and informed me I was no longer eligible for the trial since I had progression in a new spot. At first I stared at her and waited for her to say something positive, when that didn't happen, I broke down.  Dr. Phillips is so sweet and as I mentioned before, I believe we are about the same age, so I know this is not easy for her to give this news to us.  After she rubbed my back for awhile, she decided to give Don and I some time alone.  After what seemed like forever of me crying, she returned and we went over the next options.  She had already consulted with a few other doctors including Northwestern and they all felt the next drug of choice was Eribulin.  It is given for 2 weeks on and 1 week off - same as what the trial was.  We will do 3 rounds (9 weeks) and then repeat a scan to ensure we are on the right path.  I was anxious to start and Dr. Phillips was able to get our insurance on the phone and approved and we went off to the infusion lab for my first treatment.

My parents were anxiously waiting in the waiting room.  I think they too were hoping for some reassuring news that the current drug was working.  I was able to text a few words to my mom to prepare them since my eyes were about welted shut from crying.  On the way to the infusion lab a few nurses stopped to hug me.  It makes me feel good that the entire team at the University of Chicago is rooting for me and when I get good news, they are happy and when I don't, they are there for me to give me a nice hug. I think it was also nice for my parents to see what good hands I am in.   I hope soon we can all high five, fist bump, hug, and cry tears of happiness.  I am due I believe.  This new infusion is very fast.  It takes longer to get my blood levels than the treatment.  The treatment takes 10 minutes.  I was a little let down with this - I do enjoy my Benadryl induced coma.  Oh well, after treatment I was able to crawl into bed and sleep the afternoon away while mom and dad tended to the kids.

Don and I have decided at this point, we need more confidence that we are on the right path.  As I told Dr. Phillips, I feel like we are picking these drugs off way too fast and every time I get a scan I learn how much closer I am to death rather than how much closer we are to recovery.  She has reassured me that we have more to go, but we have decided that it is time for a 2nd opinion.  Back in January when I started the trial, I had reached out to Dr. Lisa Carey through Chapel Hill, NC.  She is listed on-line as a triple negative guru.  At that time, we e-mailed back and forth and she agreed with the trial and knew Dr. Nanda (Dr. Phillip's boss)  At that point we were comfortable, but now that we are on to the next drug, I think it is good to get in front of her and have her look at me and review all of my scans and prior treatments.  I was able to get in with her on April 2nd.  I will fly out on my birthday (April 1st) and my parents will meet me there to take me to a nice dinner.  We will stay at a hotel and then go to my appointment the next day and then I will fly home.  It will be a quick trip, but I'm really looking for more reassurance or another option for treatment.  The hope is they all agree, but if not, she can hopefully concoct a plan and have Dr. Phillips treat me here for it.

Since a lot have asked (I'm grateful for your questions because it shows how much you are truly invested in my recovery and well being)  Why don't they know what to give me.  It is not easy to explain, but here I will try.  Triple negative means the cancer is not hormonal.  Because it is not hormone related, there is not a set treatment.  Triple Negative patients are grouped under one huge umbrella of "We don't know yet what to do with you so sit tight".  Not funny, it is true.  There are probably several different forms of triple negative, but science has not yet been able to detect each one so that is why we are just throwing things at this cancer and hoping me get a bulls eye.  It is super aggravating as a patient and I know it is for you too.  Next time you think of donating to something, remember breast cancer or more particularly a triple negative foundation.  More research is necessary to detect what we need in order to survive.  I have met several triple negative patients.  Some are in remission and some like me are fighting for our lives. I am not down playing hormonal breast cancers because like triple negative, some women have recurrence or do not respond to treatment.  It just goes to show how much more work is needed to cure this stupid disease.  So hopefully this helps.

Don and I are doing okay.  We are down, but trying to stay hopeful that the third time is a charm.  We are exhausted physically and emotionally.  I can speak for myself here and not him when I say that I am   having a hard time getting through the day with out tears.  I feel like I was overly confident with the trial since I had done carbo before and responded to it.  I feel like my body is failing me and it is easy to blame myself.  I know I am doing everything I can.  I may not do yoga daily anymore or juice regular like I should be, but I am doing what I can physically do daily and that has to be enough.  So see, I know this, it is just hard to remind myself of this all the time.  I also know that I set the mood these days at home which is extremely difficult.  Everyone- parents, friends, Don and the kids follow my emotions.  So that is difficult because I'm human-I break down, but when I break, so does everyone else.  And when everyone else breaks down, it makes it all real and scares me because it shows me that they are scared too.  I'm not saying don't cry in front of me, but this hell has got to end.  My faith in God has grown stronger and I have not lost hope, but this is beating me down.  I need your prayers now more than ever.

Some has asked about my hair, my hair is getting weaker by the moment and will probably be gone by weeks end.  I'm actually okay with that.  I will miss it, but I left it short for this reason - I did not want to become attached to it.  My fear is Ryan.  He was too little to remember me without hair last time, so I do get concerned on what he will think.  But I'm ready and my hair dresser is as well.  Justin reminded me it is just hair.  Sweetest boy around if you didn't already know that.  He also has reminded me not to get upset because it might make my cancer cells grow.  See, cancer is on all of our minds, it is a word used several times during the day here.  I wish it was a swear word that I could tell him you can't say, but we have to teach him about this unfortunately and we have to educate him since he is forced to go through it with us.  Someday this will all make sense….Until then, keep praying.

Treatment #2 on Thursday and then a week off.

Love,

Amber

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...