Cancer Can Kiss It

I have been thinking a lot of what I want to say about the wonderful benefit and I still feel like I am at a loss for words.  It was so overwhelming (in a great way) and there are so many beautiful faces that were behind it that I just don't know that my words in my blog could describe how Don and I feel.  I can not say enough how much our friends and family that put this together mean to us. We knew they cared deeply about us, but what they put together (again very little experience in this field) was amazing!  We will never forget this day!  And to those of you that attended (746 people was the final count I'm told) we thank you so much. We know the band and the atmosphere was awesome, but you came for us.  You came because some how somewhere you have heard our story and wanted to show support.  My God!!!!!  We love you all!  And the generous donations we received was out of this world!  So generous and so genuine.  We can't wait to pay it forward and we already have some things in the works.  

I did not get much time with any one particular person on Sunday, it was so busy, so I apologize if we didn't speak or if our conversation was cut short.  I told Dan and Joe (The master minds behind the benefit) that I felt like I was a Kardashian or something.  I even talked to people through the stalls in the bathroom!  It was a great problem to have so I am not complaining and I know you all understand if we didn't get much time together.  We are still on such a high from the event.

Please stay in touch with us as we continue our journey.  The benefit has given us the strength and the courage to keep reaching.  We are not at the end of any roads and we feel like we now can not see any end.  This is because on Sunday there was such a feeling of love and of God in the room.   I know I am not healed, but I do know that I have at least 746 people praying and pulling for me.  And I know more, because several have reached out to me that could not make it.  Several have sent cards of encouragement.  We feel it, and the Lord works in mysterious ways and I do not think he is done with me here!  

Chemo tomorrow before Don and I leave Thursday night to see Whitney graduate from the University of North Carolina Asheville.  We can not wait to hear her named call.  She is our angel on earth.  She gave up a semester at school and put her social life on hold to take care of us and our children when I was first diagnosed.  I know the saying, you will do anything for family, but this was a courageous thing for a young women to do when we all know how important college is but also how important our social lives are when you are in college.  I hope and pray that she gets the best job she could dream of.  She deserves only the best!  She is beyond amazing!  

I have included a video of my speech from Sunday since there was a lot of my family that could not attend because of the distance.  So I hope it will download and you can enjoy it.  If you can't, I will try to find a way to get it to you. 

We love you all!  Keep up the prayers and the support!

Please go to the following address to view the speech: https://www.youtube.com/watch?v=0y6rXTcKQdk&feature=youtu.be

Amber

https://www.youtube.com/watch?v=0y6rXTcKQdk&feature=youtu.be

Busy Week

Good Afternoon!

What an eventful week for the Naughton family!  Well, as eventful as Lisa visiting, grandparents day, fundraising, chemo, egg decorating and blood transfusions go!

Wednesday was an eventful day for me as Lisa came up to visit.  She cuddled and played with Kaner all day.  (yes we still have the puppy)  It was great to catch up with her.  We text all the time, but her busy graphic design company (longfellowdesign on Facebook) and my busy schedule of chemo keep us apart far to often.  Wednesday was also grandparents day at Justin's school.  Nana and Papa Naughton both joined Justin for a fun game of bingo and then went to his classroom for more fun and games.  We ended the night with Justin's final basketball practice.

Thursday I was privileged to have our good friends Al and Jill join me for chemo.  They were so fun to have there to talk to and keep my mind busy.  Chemo starts every time with blood work to make sure my levels are okay for treatment.  This week was a little different because they put me in a room that had a GIANT chair….Don't believe me, check out the pictures!  Quickly after my blood work one of the lab workers came to the room and showed my nurse some reports and I knew then I was in trouble for something.  Come to find out my red blood cell levels were low.  My nurse explained this is probably from the previous chemo drug since your red blood cells don't mature and die off (I may not be saying this right) for 90 days.  So I was quick to point out that this is not my fault since my last blood transfusion was 90 days or fewer ago.  So in fact it was that poor donors blood that caused me to have low levels and not Amber!  The good news was I was still able to get chemo, it just meant that I would need to return on Friday for a blood transfusion.  Chemo went well and following that Al and Jill took me out for lunch.  It was great to just catch up with them and talk about something other than what is going on with cancer.

Thursday evening was spectacular!!  With our friends helping arrange for donations for the benefit on May 4th, our friends Dan and Michele were cool enough to get a local restaurant to set up a fundraiser Thursday evening where 10% of every bill was donated to us.  Don and I went with the kids.  Earlier in the week the New Lenox newspaper came out and interviewed me about my cancer story and the upcoming benefit.  They wanted to get some pictures at Gatto's Thursday night so we attended to eat, take pictures and visit with friends and family.  Following dinner our great family and friends stayed and had a follow up meeting for the upcoming benefit. 

Friday I reported to my infusion chair at 11:00.  I received 2 pints of blood which takes about 4 1/2 hours.  The first half I slept through but eventually woke up and was pretty bored and I have decided I am not a fan of TLC's "Say Yes to the Dress".  Horrible show!  After my transfusion I had to head to the cancer center for my shot to help boost my levels and then off to Target to get some last minute Easter treats:)  Nana and Papa Naughton kept the kids last night so Don and I rented Wolves of Wall Street and I stayed up for the entire movie!

Today was soccer and resting.  It is gorgeous outside so we all went to soccer practice and Ryan met some friends at the park right by the soccer field.  Justin was excited to get his soccer jersey.  He is #4!  His team is the Panthers and he is so far really enjoying it!  Games will start at the end of the month. Easter Sunday tomorrow at the Naughton's house with the Goodnights and Marrone's (My sister in laws mom and dad and sister and husband) It looks like another nice day so hopefully we can spend the day outside.

This week is Justin's spring break.  He is booking up fast which is awesome!  I am treatment free this coming week.  Just an appointment on Thursday for a check up.  I am looking forward to spending some time with Justin while he is off school and hopefully having some extra energy since I received some good blood yesterday!

Happy Easter!

Amber

P.S. If you live in New Lenox, don't forget to check out the New Lenox Patriot on Wednesday!  Also, if you haven't already done so and plan to go to the benefit on May 4th, please do your best to purchase your tickets in advance.  My friends and family planning this are trying to be as accurate as possible when giving a head count to Bourban Street.  Also to ensure there are plenty of volunteers to work the event the day of.  It will be the best event in 2014 so you don't want to miss out!!

www.cancercankissit.org

I started round 2 cycle 1 of chemo this morning.  My levels rebounded wonderfully with the help of a shot after my last round so there were no problems to report.  Just hoping to relax and stay ahead of the fatigue.  So prayers for that are appreciated.

Since I don't have much other news, I thought I would use this blog entry to plug the upcoming benefit being held for Don and I on May 4th.  Our friends are going crazy posting fliers.  I am entertained by friends sending me pictures of myself in a lot of bar establishments some that I used to frequent and others that I have not heard of.  Our friends and family are working like crazy to get the word out about this event.  They are also coming together with several restaurants, spas, golf courses, etc to get awesome raffle give aways the day of the event.  On top of the raffles, there is also a silent auction that will be held for items such as 2 condos in Florida and a  house rental in Michigan.  Oh and BIG SCREEN TV's.  If this isn't enough to make you want to attend, I don't know what is.

Kids and adult are welcome on May 4th.  There will be several events for kids to partake in and our favorite local band is playing "The Walk-ins".  Not only are they the best band, Our friend and Ryan's Godfather is the lead singer! (We were not paid to say this, they really are THAT GOOD!)  Check out their website at www.thewalkins.com.  Also the ticket price includes beer and wine and a buffet.  Please go to the website www.cancercankissit.org to get your tickets today. 

The website set up for the benefit talks about what the money will go towards, but to personalize it some, I thought I would share for you here as well.  Don is fortunate enough to work for a great company that offers health benefits, but like anybody with benefits, there usually is a deductible that you are required to pay out of pocket before insurance will cover 100%.  2 years ago, I would not have known what my deductible was nor did I really care about my health benefits.  Just so long as I carried my card in my wallet and took it with me to my once in a blue moon appointment, I was just fine!  I paid my piddly co-pay and went on my way. After being diagnosed last year, we started to see what 1 round of chemotherapy could cost.  Last year my insurance paid approx $300K for my chemo and surgery.  This year being on now 3 different types of chemotherapy, Don and I have reached our deductible and in fact, we did so in early March.  Insurance will now pay 100%, but our portion is not  a few pennies.  We are paying what we can and going along our way, but we get that me having Stage 4 cancer, when January rolls around, we will be expected to meet the dreaded deductible again.  So even if we could pay off this year, this is going to be a yearly expense.  

Along with insurance, we have also decided to enroll Ryan in day care a couple days a week not only for him to build strong social skills, but also because with this chemo, I have days of severe fatigue.  Being a one income family now, we are watching our money more closely and if I were not ill, he would not be attending daycare.  So this will help ease the financial burden of him being there and should we need to increase the number of days he attends, we can feel like we can do that.

Lastly it will help Don and I should we decide we need to travel somewhere for another opinion.  Last week I went to NC for an appointment and it was a rather cheap trip considering my parents had miles for me to fly and they paid for our hotel room.  Unfortunately we do not know someone in all 50 states and nor will I expect my parents to front the bill.  So money raised can be used for travel and hotel accommodations.  As I mentioned Dr. Carey at Chapel Hill gave me a few trials that I may qualify for, but none are local.  The closest one they found was in Ohio at this time.  So while I am not going on this trial, it shows that in the future a trial may require me to travel.

So in a nutshell, that is what we are up against.  We are so appreciative for all that have donated and would LOVE LOVE LOVE to see as many of you there as possible on May 4.  Don and I have the most supportive network and not only would I love to see all of you, I want our family and friends that have been working so hard towards this benefit to see it pay off.   So if you can, go on the above website and purchase your tickets in advance and come out that Sunday to see friends, family and US!!!

We love you all!

Amber 

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!