Thursday, April 3, 2014

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

1 comment:

  1. Last year was the first time my family and I attended Our Kid's World Fun Fest in West Palm Beach and we had a really great time. I recently found out the event is happening on Saturday April 26 & Sunday 27 and that I can even get FREE tickets for the kids online. Not only are my kids excited about this event but they are eagerly looking forward to meeting their favorite Nickelodeon characters. Here is the link where I accessed free kids tickets www.adayforkids.com/free-kids-ticket.cfm or you can visit their website www.adayforkids.com for more event details.

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