2 Year Cancerversary

While reading through last years posts to reflect on my 2 year cancerversary, I have mixed emotions. So like I love to do, I will put them out there in writing to share with you and also as I say, to cry in my corner while I write and you can cry in yours (I'm hoping that isn't the angel this update is going to go but I just type it-don't shoot the messenger:)))  

 Last year I was filled with joy and curiosity as my career with Porsche came to an end and Don and I had all intentions for me to join the work force again after taking the summer off to breath and catch up on life. I enjoyed my summer so much- exercising daily, reading about eating the right foods and using my juicer, playing with the kids, visiting friends, traveling, doing our first family vacation....learning to let go of the side after the huge tidal wave tried to take me down one nasty June day in 2012. 

 August arrives and I find several lumps (mosquito bite size) on my right breast. I see a general doctor because I'm done with cancer and besides 6 month follow ups, I was cleared to my regular doctor. My general doctor takes a look and says it is mosquito bites and to use a cortisone cream and sends me on my way. Not before though I realized she didn't pass the sniff test-she asked when my next mammogram is. I get she is not an oncologist or breast surgeon, but most of you are probably scratching your heads (if you aren't, then use this as a teaching lesson) and saying why would you get a mammogram when you had all tissue removed with a mastectomy? So in true Amber fashion, I tell Don, my parents and Wendy not to worry, it is nothing and I just want to see my breast surgeon for a second opinion. I truly WAS NOT worried. August 23rd proved me wrong yet again and turned our world upside down a second time.

I remember Dr. Bethke's resident examining me and saying "yeah I don't think it is cancer but let's have Dr. Bethke take a look". If you are going into the field of becoming a Doctor or nurse, please do not share your opinion with a patient -share it with the doctor….Anyways, I sat there waiting for Dr. Bethke and was kind of doing the happy dance because of the resident and continued to plan our approaching Disney trip. Dr Bethke comes in and is reserved as it is, he wants a biopsy because of the triple negative....then he did the standard "feel for enlarged lymph nodes" armpits quick exam-seemed fine, collar bone-perplexed look and then over to the counter in the exam room I look over his shoulder and see him use a red marker and place am "x" on a picture of a females body around the right collar bone. I knew it, he didn't have to say a word! Next came the words I have heard before "Amber please take a seat"....I quickly move from the exam table to the chair and say to him, " when will I learn I can't come to appointments like these alone?" Remember I was diagnosed alone too because as much as my instinct works to get second third and fourth opinions, I guess I'm off on the going to these second third and fourth opinions on my own.  

 The next few weeks were a whirlwind because what I knew about this recurrence a lot did not. I had to explain a lot and make decisions a lot based off of the recurrence. A recurrence automatically moves you to a stage 4 cancer patient. I argued my points, which I thought were valid: the lymph node location and chest wall being the only impacted area would have made me a stage 3c if this were my first rodeo, but if you have done chemo and have a recurrence, you are looking at stage 4. Our decisions ranged from whether to go to Disney or not (2 weeks away from the recurrence diagnoses), should I go back to work ( had an interview prior to learning of recurrence so do I work and be normal or enjoy what time I have with my family and kids) accept social security as a form of income, letting Justin in on the recurrence when Justin was already having a hard time adjusting to first grade. All of these were just the initial decisions. Later came explaining to family and friends what stage 4 metastatic breast cancer means. Trying to stay positive for them while I educated them so they didn't get scared. Trying to stay positive all the while knowing that the double whammy of having triple negative breast cancer along with a grade 3 tumor (growth factors: 1 is slow growing and 3 is the highest so take it from there). Learning and explaining to others the use of chemo for a metastatic breast cancer patient is not finding the right chemo to rid the body of cancer, it is to find the right chemo to stay ahead of the cancer so it does not spread further than it already has. I would like to say looking back that Don and I did our best with our families and held things together as well as we could without looking naive at our odds and taking the news and trying to make the best of it, but I know we aren't perfect and nor would any of you if you were handed this bag of garbage or if you are living with this bag of garbage.  

 Throughout this past year, I have tried my best to live my life as wisely as possible. That included making decisions with the free time I had and who to spend it with. I didn't want negativity. I wanted people in my life that cared to understand my diagnoses. Cared about my family's well being and stepped in and did what they could to protect us. I didn't want to be a burden to others, and I understand that some might have a fear of what is or isn't appropriate to say to one going through this.  Especially when you add in there our age, most of my friends and family have not had to deal with this type of news at this stage in our life.  But I did decide that if you can't be there when I'm at my lowest, I certainly don't want you there at the grand finale that I hope someday to finally get -where we learn I beat the odds.  

I love when a friend or family member comes to me for an ear to listen.  I hate when they say "I hate to burden you with this because it is nothing compared to what you are dealing with."  You see it is something.  My something may not have answers, but everyone has their battles, so with that I say, I do genuinely care and want to understand your current struggle.  At times I feel that I am a better ear than others or than I used to be.  I will correct someone if I think it is a fruitless argument.  I will play the devils advocate to help a friend understand where the other person is coming from.  I guess my point is, I feel that going through cancer and cutting out some negativity has made me a better person and with me being a better person, I feel I have rubbed some of that off on others.  

I'm not preaching that I know I do not have this perfect life and never complain about things or don't make bad calls.  Don and I are constantly trying to remember to let go of the stressors or things that get to us that we can not control.  We sometimes find ourselves on separate pages and not communicating or understanding each others points.  This is difficult because like you hear constantly: cancer will make or break a family.  I refuse to let it break us.  We are stronger than cancer.  To make it though, we have to fight harder when we are completely worn to the bone tired.  Sad to the point where tears won't flow, but sometimes happier at the smallest thing that in our old normal life, we may have looked past because we were too busy to see it.   But most of all, we are constantly reminding one another of the things that are out of our control (insurance, cancer, scans, sudden deaths in the family, etc)

This past year, I also joined a church.  Don and I attended every once in awhile to his church growing up and we love Pastor Don, but we needed something closer. So Whitney and I made some rounds over Christmas and found the perfect church on of all nights but Midnight Mass. The music had me at hello! From organs to bells to piano to flute....beautiful! The following Sunday being greeted by Pastor Dave and him recognizing that we were returning guests helped even more. But most of all is the fact that Peace Lutheran Church does a healing service once a quarter (I believe don't quote me) at their Saturday night service. They ask if you or someone is in need of prayers you go up and announce to the Pastor your healing request and they pray right there with you. When I attended this service in January, I was only going here for a few weeks, I had hair due to the current treatment not robbing me of that. I whispered to Pastor Dave what was going on and that I needed prayers for an upcoming scan and his jaw almost hit the floor. I think this shocked him! Ever since then, Pastor Dave has followed my blog, added me to a prayer list at church and checks on me and provides me with projects to keep me busy! It is like he got me right away. He realized I wanted to join a church that felt welcoming and was right down the road. In my opinion, he kind of just took me in under his wing and has made me feel closer to God than I have in a long time. Attending his service and listening to his sermon I leave thinking "thank you, I needed that, it was written for me". At times this gives me a refreshed look at life and I change my ways. Other times I think how well off I am when you hear of others who are walking their struggles alone. So church was also added to my year and I love it! 

There are many other things we have accomplished between my first and second cancerversary, but I don't want this to be a book, just a blog…..In January, learning that my chemo pill had stopped working, mom and dad were here with me for those results. That Sunday I took them to the airport and I was sad and so were they. We learned that I was invincible and that I wasn't going to walk away with just a few scrapes and bruises and that my fight was going to continue to get harder and harder. Two days after they were home mom called me from work and told me they had talked to a realtor and pending the house selling, they were moving up. I wanted so badly to kick and scream and tell them not to do that for me, but my life was crumbling before my eyes. I knew from previous experience, chemo was going to fatigue me and I was going to need more help with the kids. I knew with the cancer moving on us was just another step closer to the end prognosis-I'm still not able to see the end of the road, but know it will someday come-for all of us, but mine is maybe just a little more clear than yours. So with that, I want my mommy and daddy! I want them around to pal around with. I want them to come here or us go there and hang out on a weekend. Have sleep overs with the kids, have them get to Doctor appointments with me to help them fully understand all of this so I don't always have to be the messenger. So the house went up and a day later it went off the market because it was purchased- is this not a sign that they made the right decision? I know it was a HUGE decision. Being close to retirement but needing benefits, leaving 2 jobs that they had security with. But who would not do that for their daughter or son?! I was thrilled and even more thrilled that I didn't have to make the request that they and God made the decision and God is walking them through all of the remaining steps along the way. Dad is here and mom will drive up after July 1st. They have a verbal sale agreement on a home that is gorgeous, but as of right now, not the actual contract yet. Dad has had a couple promising interviews with some great companies and hopefully within the next couple of weeks he will be back out there working.  He asks to save your prayers for something else, but I do request prayers for this.

On the cancer front for this week, I had chemo yesterday and received both drugs.  This will be my first full round of receiving 2 drugs the first week, 1 drug next week and 2 drugs on week 3.  I did learn that my Cancer Antigen number has increased significantly - this is a blood test that is done to kind of gauge if the chemo is working and killing off the cancer.  It is done once a month and from last month, it did spike.  Dr. Phillips is saying she does not use this solely in making decisions on moving to another drug.  And my thought is considering I didn't get the right meds last month due to the insurance and hospital mishap, maybe it rose due to that and then previously being on a chemo that didn't work.  So prayers please - this has to be the drug (if not we aren't done) and I need this number to go down.  I also am asked for a monthly urine sample because one of the drugs can cause you to have protein in your urine.  While I don't have that, they did find white blood cells in my urine so this hopefully means an infection.  So adding another prescription to my night stand!  

So in closing, I ask for prayers for my numbers to decrease, dad to get a job and for me to be typing about my third cancerversary next year.

Love Always, 

Amber

Sunday Funday

Happy Sunday!  Not a lot to report.  We have had a nice relaxing weekend at home.  Friday after Justin"s soccer game Don and I went out to a friends family party.  As much as I had to talk myself into going, it was nice to get out.  Saturday was more soccer and then fun in the backyard sprinkler and basketball.  Today was more outside creative fun which I hope is a sign of how the summer will go.  Summer break officially starts at noon tomorrow!  While Justin is excited, I am not quite sure I am....I just want him to be busy and have fun and I"m not always up for much these days.  We do have him signed up for some camps so that will help.  In fact the first one is a week from tomorrow.  It is called Camp Hope. It is a camp for children who have a family member going through cancer.  I have talked to one of the social workers and she said they do normal camp activities but then do break out sessions which include yoga, meditation and other ways for kids to handle the situation.  I am hoping he meets some friends that will last a life time and that he will learn that while it is scary, he isn't   alone.  So wish us luck!  

On the cancer front I am hanging in there.  My treatment on Wednesday was uneventful, which I like.  I did learn that my red blood cell count was just hanging out low, so since I was feeling sluggish, Dr. Phillips decided we would do a transfusion.  So I went back on Thursday for 1 unit of blood.  Usually I get 2 which takes close to 5 hours.  With the 2 units, because of the Benadryl, I usually sleep through the first half and watch TV the second half. Well, they gave me the Benadryl and I was out.  Out so much that I guess there was a fire alarm going off for a good 20 minutes and I didn't even stir....Good thing it wasn't real!  The nurse basically woke me up 2 hours later and told me I could leave.  I was a little upset that she disrupted my nap, but home is always better than the hospital.  It did perk me up some, but again with the increase in pain meds, I find myself napping a lot.  

This week will be my off week for chemo.  I am ready to get back at it already as I am not a fan of off weeks.  Plus because of the insurance issue, I really didn't have the right concoction this first round.  So my pain is still pretty constant and the same.  I was hoping it would decrease by now....So pray that I get through this off week and the pain doesn't get worse and nothing new pops up.  

On my down time I am having a good time hanging with my dad and Whitney.  I hope they find work soon, but I will miss them.  We are also spending time looking at houses online and in person. Ryan is still going to daycare twice a week and as much as he cries when we drop him off, he has so much fun!  Mom will be moving up after July 1st just in time for Jessica and her family to get here for a week.  I know them being here will keep my spirits up.  I just want my energy level to be up too so I can do fun things with them all.  

Well, it is almost time for dinner and a movie.  Even with a day left of school, it seems a good summer routine has started.....evening grilling and movies.  Nothing like it.  

Enjoy your week ad pray for me and everyone else going through a hard time.

Love,

Amber 

New Meds All Around

Thank you for those that have called or texted to check on me.  I am as a matter of fact doing okay.  Fell off the grid for a bit, but hopefully getting back on track.  Like the saying "I fell off the wagon, but I'm back on."  That is me.  I didn't see it coming either.  For as high as Don and I still were from the benefit, I really didn't see a bad time coming for awhile, but like cancer is unpredictable, so is my life I guess.

Last week I was to start my new chemo of Avistan and Abraxane.  I knew I needed my fix as my pain was getting worse and worse.  That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time.  So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going.  I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco.  It has to be a paper prescription.  So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication.  When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs.  Finally Dr. Phillips came to chat  about my pain and prescribed me a stronger pain medication.  This was when I learned that my insurance had declined Avistan as a drug for them to give me.  I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear.  The hospital had almost 3 weeks to work with my insurance to get this approved.  Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation.  I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment.  I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy.  It is just so sad.  Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink.  Just doesn't make sense and is so unfair given my circumstances.

Okay I'm off  my soap box….So Wednesday I received one drug and was sent on my way.  Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years.  We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do.  I say great, so will they fill it?  Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location.  I am off my soap box, but just imagine what was going through my mind.  So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription.  Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities.  So off I went for a milkshake and a stop at Walmart.  Why not feed my pain with more pain of going to Walmart….

Home Wednesday night and I start my meds and I'm loving them.  Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired.  I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank.  So I was left to just take medicine and sleep it off.  I woke up Friday and mom had arrived but was feeling about the same.  We were heading to Don and Wendy's lake house that evening for Memorial day weekend.  Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away.  It got so bad and I was so tense that my back cramped up and my toes were stuck curled up.  I was crying hysterically so we turned around.  This scared me so much. I am not a weeny in my opinion.  I feel like I push myself more than some that have not gone through something nearly as close to what I have.  So this was very unusual for me.  Because it was after hours, I paged the Doctor on call.  She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone.  So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.

Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free.  Mom and dad had gone to visit their mothers.  The quietness of the house was awesome.  I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again.  Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense.  I have signed up for monthly massages just for that and to keep me in check.  Something that used to be a luxury item for me has turned into a necessity.

Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours.  So Dr. Phillips and I discussed and she completely agreed.  She also hopes it will take away some of my anxiety.  I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier.  (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day.  So far it has gone okay.  I'm still needing to take some norco for small amounts of break through pain.  It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday.  Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained.  I don't like that because I feel like I'm on guard at all times and scared it will happen again.  I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug.  (Applause)  So far I feel good.  I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo.  All I know is I am getting the best help around here with dad and Whitney.  My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around.  I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important.  When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:)  But they are awesome!

Please pray that this new chemo is doing its thing.  Pray that my pain medicine will finally work to keep me out of pain.  Pray that dad and Whitney find work.  For dad so mom can get up here as we all miss her so much.  For Whitney so she can begin her life as a big girl.  Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be!  Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding!  They will find something close so they are there when we need them.  Just like Don and Wendy.

Love to all!  Have a great weekend.

Amber

Home Sweet Home

Well, it is official, Whitney Garrison has graduated from University of North Carolina Asheville.  We had a great weekend away in the mountains and seeing some good spots in Asheville before Whitney moved.  Don came home on Sunday morning and I stayed another day to celebrate mothers day with my mom and drive the moving truck with Whitney's stuff back up on Monday with dad.  Dad and I made the most of the 10 hour drive home.  I can not complain about the drive one bit.  Although I did not drive so he may see things differently.   I was able to get a couple naps in and make a pit stop in Columbus IN to see my Uncle Rich and aunt Tam's "new" house.  They have lived there for 6 years so I guess what may not be new to them, but new to me.  Beautiful home on the lake.  They surprised dad and I with a baby!  Yes, a baby….my cousin Jill was there with her daughter Quinn who is 2 months.  Beautiful surprise!  It was sad to learn at the benefit that my aunt Tam's father was diagnosed with cancer.  We received an update on him and it seems he is handling his chemo like a champ!  So good to hear.  Cancer at any age does not come welcoming. So do me a favor and please add my aunt Tam, her father and her family to your prayers.

While away, Don and I learned that his Uncle Ron passed away.  This was sad news to learn because we just saw him at the benefit volunteering.  He has 3 grown children and 4 grandchildren.  His services were held Tuesday and Wednesday.  It was a beautiful service. So another prayer request for the Pondelicek family.  Especially Ronnie Jr and Kathy, Brian, Trish, Sean and Molly and Adam, Kristi, Jeremy and Zoey. And also Uncle Ron's brothers and sisters and mom. 

On the cancer front, this is my off week.  Last week I received my chemo but also spoke to Dr. Phillips.  I could tell my nagging pain was coming back in between my regular pain pill time.  It was becoming worse and worse and I was also noticing some new red spots on my chest wall.  This told me that the chemo I currently am on was probably no longer working.  So I made the brave decision to call out the cancer this time rather than it calling me out.  What I mean by that is I was scheduled to have a repeat PET scan to see if this drug was working before moving on.  But after the uplifting benefit, I decided I was not going to let a chemo regimen that decided to fail bring me down by getting a scan and learning of a possible new location that the cancer had set up shop.  Rather I asked Dr. Phillips if we could just move on without a scan.  See my chemo treatment does not change whether the cancer stays put or travels to an organ or new nodes so my new opinion is, what I don't know can't hurt me.  I know to some this sounds like a small victory, but for me, it was huge.  Hearing we have to move on makes you feel like things are out of your control.  For me to make the decision and basically come to terms with it rather than being told by someone else, is my small way to feel in control and to feel in control to me meant not losing any of my high from the weekend of the benefit.  So there you go!  I also feel that sometimes knowing or hearing something makes me anxious and that feeling is hard to shake.  For example, when I fell playing soccer a few weeks back, I fell on my hip that has a spot that has not been ruled as cancer but has also not been ruled out.  So I limped for a week and told myself that this was it, it probably is the cancer blah blah blah.  Well, a week later, my hip does not hurt and I am not limping.  See?  See what a scan does to me?  I just would rather not know right now since my treatment plan stays the same.  

So new chemo starts next Wednesday.  I will be doing 2 drugs for 3 weeks and the 4th week off.  Week 1 I receive both drugs.  Week 2 I receive 1 drug and week 3 I receive both drugs again and week 4 is a week of rest.  I am told I should be able to tolerate these drugs about the same as the other drugs.  No new side effects that seem too scary for me.  The drugs are called Avistan and Abraxane.  

So wish us luck!  Have a great weekend!

Amber

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