Monday, February 24, 2014

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!


Saturday, February 15, 2014

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!  



Saturday, February 8, 2014

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!


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***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...