Friday, August 24, 2012

1 Down 11 More to go!

First treatment of Carbo and Taxol is behind me!  It was a long day!  Whitney was my chemo buddy today and I thought with a new face they would impress us and be on time.  Nope, not this time!  My appointment was for 10:20.  The routine is they hook me up to the IV through my port and draw labs.  While the labs are being ran, you see the nurse and go over the past side effects and they do vitals.  Then the Dr. comes in and by that point, he usually has my labs so we go over that, I try to make him laugh and then we measure the stupid tumor.  Following that you go to the chemo room for treatment and that is when the 2 hour clock starts for my old regiment of AC.  Today, after waiting until 11, they called me back to see the Dr.  I reminded them no one drew my labs, they were shocked!  So a nurse comes in while the other nurse is trying to get my previous side effects and talks about running my blood work through my arm.  They seemed to forget that trusty Michael Bolton was installed to do this for me and them A LOT easier.  So I had to remind the nurse, which was very nice so I can't really complain a lot.  So they drew labs then I saw Dr. Hantel.  We went over the new drugs.  Taxol every week, Carbo Platinum added today and then every 3 weeks.  Taxol will have little side effects so the weeks that it is just Taxol, should be a walk in the park (I sure hope so)  The week of both, he said I could have more of a problem with nausea, numbness in my fingers and toes, swelling and the dreaded FATIGUE!  When I asked how long for the turn around on fatigue he told me 4-7 days.  So just in time for Taxol!  YUCK!  But I'm trying to stay positive and realize then I get 2 full weeks of just Taxol and hopefully this will give me longer than the AC to bounce back!  Lets hope this is true!  He felt the tumor had shrunk some more and was happy to realize he could barely feel my enlarged under arm lymph node.  

After seeing Dr. Hantel, we went to the chemo room where they informed me that for Carbo Platinum, the dosage is based off of your kidney function.  So they had drawn labs on my kidney function which takes an hour to come back.  So nothing can happen until then.  The nurse came back around noon and told me she was stalking the Dr. and the pharmacy to see if she could get my chemo mixed before the pharmacy closed for lunch.  Yes, for lunch!  I get it everyone gets a lunch break, but I was on time today and didn't get mine!  I was getting a little grumpy and the steroids I had with breakfast weren't helping.  But my nurse was awesome and was able to get my stuff done before lunch!  So next came IV bags of anti-nausea, Zanax and steroids and a benadryl pill.  THEN another 45 minute wait for those drugs to run their course in my body.  Then Taxol, which a small percentage of patients have an allergic reaction.  This drug takes an hour and prayers worked once again and I did not have any reaction.  The last kicker for the day, Carbo platinum is supposed to be a 20 minute drip so I think I am just about ready to chew my arm off, but I know the finish line is near.  They tell me my trusty little kidneys are so good that I could handle more than the average person for Carbo platinum so my drip will be an hour for this drug!  Good for you kidneys, stay strong, but I was so ready to get out of there. You all know the smell bothers me so bad that I can't snack or eat while I'm there so I just sat and worked and worked and worked!  It kept my mind off of the hunger and the smell.

So the weeks I just have Taxol, we are looking at 2 hours, but the weeks of both drugs, it will be a 4 hour ho rah!  I am going to have to find a way to sneak a snack in or lunch.  Even the nurse was tempting me with the Southwest Salad that every raves about at the hospital on given Fridays, but I couldn't do it.  The smell is so clean and it just makes me sick.  The minute I pull into the parking lot my stomach turns and mouth waters.  Then when I leave, it is instantly gone.  If anyone can offer any tips, I will gladly take them.

So thank you for listening to my ordeal.  I know it is a small problem in the big scheme of things, but it is really annoying to wait around for others especially when I get so anxious there.  So again, 1 down 11 to go!  

Whitney did a good job keeping me entertained with Pins from Pinterest and enjoyed her quiet day of just surfing the Internet and watching mindless TV so I don't think she minded too much.  She is now at work at Starbucks and will then pick my parents up at the airport.  They are in until Wednesday early morning.  I am so excited to see them!  Wendy stayed with Ryan today and made us dinner and did laundry!  YAY!  Justin survived his first 3 days of Kindergarten and has done great with the transition. He looks forward to returning on Monday.  This morning he didn't quite understand why he wasn't going on Saturday and Sunday.  I am sure that won't last long!  We also signed him up for soccer again which starts the weekend after Labor day so he will have something else fun to look forward to.

Well, here is to hope and prayers that the ugly fatigue will not rear its head too much and we get more shrinkage out of this!!  Every time I think I outsmart the fatigue, it always shows up!  YUCK!!  It is not fun, it is absolutely the most frustrating thing.  Almost more so than feeling this stupid tumor.  I am just not used to doing what I want when I want and HATE the idea of slowing down.  When I do feel better, it is heavenly!  So please pray for me!  Also for my family as they have to step up more during my slow times and I know that is a lot on them.  I also lose my patients more and they take it in stride and that stinks.  After all they do, it probably stinks to not get my beautiful smile or smart, funny, witty comments back!  So please pray for us all!  This could be a roller coaster of a week, but maybe not!  

I will touch base more after the weekend to let you all know how I'm doing!

Love to all and enjoy the weekend!


Tuesday, August 21, 2012

First Day

Just wanted to take a minute on my first "real" day off from work since I returned after maternity leave to give you an update!  Today was the day!  Justin started Kindergarten!  He was so excited and did excellent.  So did mommy!  Justin is in the afternoon Kindergarten this year.  Don and I walked Justin down the road to the school today at 1:30 to meet his teacher, put away his supplies, meet the bus driver and walk around the school.  His teacher seems so nice and is a graduate of EIU so I'm sure she is just as smart as Don and I.  She of course graduated a lot more recent than Don and I, but that is okay, that will just mean what she has learned is still at the forefront of her mind!

Justin was so excited to learn 3 of his Tiny Treasures day care friends are in his class!  This was so good to know.  He has attended Tiny Treasures since he was 9 months old and a few of the kids in his class have been there just as long. This made me think of his first days at Tiny Treasures.   He was old enough to have stranger anxiety and I felt so bad leaving him in a room filled with teachers and babies that he didn't know nor did I know!   He cried and I could hear him crying as I left the building.  So  horrible.  I thought, I will give this a week!  5 years later!!  When Justin was around 1 1/2, he would play at home with Little People.  He named his Little People after his friends at daycare and for the most part, he was right one as far as what Little Person was who at school.   Tiny Treasures has been a great 2nd home to Justin.  He looks forward to learning and playing there every day.  I love the staff and they have made Don and I so comfortable when it comes to caring for our children 5 days a week!  I would have never thought his firsts there would make todays transition so easy!  I know a lot of Tiny Treasures staff members read this, so Thank you!

Justin will take the bus from Tiny Treasures to and from school 5 days a week.  I think he looks forward to this part more than the school part.  But in all seriousness, he can not wait to learn to read!!   I can't wait to see what all happens this coming year for him!  This is huge and it felt so good to see his HUGE smile today!

I'm feeling good!  So good in fact that I did the grocery shopping last night after the kids were in bed, came home, cut and washed all of the Organic produce we purchased and even got up with Ryan at 4 am!  Today I even cleaned our bathroom!  WOW!  Don't think it hasn't been cleaned, it is just a first for me since I have been sick.  After the walk down to the school though and sitting there and getting really HOT, I decided I may have over done it.  So relaxing the rest of the day.  Back to work tomorrow and Thursday and then chemo Friday.

Enjoy your Tuesday!

Sunday, August 19, 2012

Weekend Update

It has been a long week for me!  This 4th round proved to kick me while I was down!  Usually I can say by Wednesday evening that I have most of my energy back and I feel like my "chemo brain" disappears and I can start to be me again.  This didn't happen this time!  Monday was just okay, not bad, but not good.  Tuesday.....Well, it was a bad day.  My brain didn't work and my eyes were bothered.  This side effect has not happened since treatment 1.  This time, light bothered my eyes and I could hardly keep my eyes open I was so tired.  On Wednesday I still felt sluggish, but went to see Liz at lunch to meditate and do some yoga.  Of course this was helpful and I felt so much better after leaving there.  I need to remember to take this time on my own throughout the day though and not just rely on our sessions!  Thursday, I guess I don't remember anything too much about it so maybe it was not that bad.  Friday!!  YAY!  My brain was back and functioning!!  

We headed up to the lake this weekend in MI.  It was just what the Doctor ordered!  We left Friday after work.  Both boys were awesome on the car ride and I dozed a little, which isn't like me in the car.  Yesterday was great!  The weather was perfect.  Too chilly for me to swim, but not too chilly for Justin!  We spent the afternoon on the boat and even Ryan enjoyed his time and took a nice snooze in the middle of the calm lake.  Last night we had s'mores by the fire and Justin and his friend Lucy told scary stories!  It was just a great relaxing weekend.  We headed home early today so we still had some time today to watch NASCAR and well, take naps.  

Weekly treatments start on Friday.  The thought of entering the cancer center these days makes my stomach hurt and my mouth water and this stinks because I still have a long way to go!  Last Friday when Don and I pulled into the parking garage I started crying.  I told him I wanted to go into the hospital and have another baby.  He didn't get it at first.  I don't really want another baby, but what I was getting at was I wanted to be pulling in to the parking garage for something exciting like we had 5 months before all of this to have Ryan when our biggest fear was what are we going to name him.  Those days were not easy days and I am not making light of having a child and the daily concerns that come with it, but this just sucks!  There is nothing rewarding about having the job of cancer.

I know there will be an end reward when I can burn everything that I have now associated with the cancer center or chemo: my water bottle that I can't even look at because I swear there are drugs in it from just being with me at the cancer center.  My pink sweatshirt that I have to wear on treatment days because it is so cold in there that I freeze, but then sweat (thank you early on-set menopause) and the latest happened today..... I went to put some paid bills in my "cancer binder" and when I opened it, my mouth watered and I thought I was going to get sick.  Really my binder?!  I guess this will be a long 12 weeks!

This is a big week for the Naughtons.  Tuesday starts Kindergarten for Justin.  He is so excited and so are we (although taking on this too makes me wish we had 1 more year of just pre-school) but he is ready and I can't wait to watch him learn this year!  Friday starts my new chemo regiment of Taxol every week and add in carboplatinum every 3rd week.  I am anxious about this.  I am scared that I won't be able to bounce back quick enough to be hit weekly, but I plan to get my mind set straight this week and just fight through it the best I can.  It is what I have to do to get to the end result.  Just pray for me that I can do this!   

Well, it is time to close up shop and relax some before a great week ahead! 



Friday, August 10, 2012

Quick Update

Just a quick update because I need to feed Ryan and go to bed!  I'm tired!  I woke up at 3:00 am this morning and could not sleep so I did some research and prepared for my appointment, so that is what I think the tiredness is about....Not the treatment;)

Met with Dr. Hantel and he asked my opinion like usual if I felt a change.  To be honest, I did last week, but by Sunday night last week, I almost felt like things were back to before.  So I told him this.  He examined me and said he felt the tumor was softer and a tad bit SMALLER!!!  I will take it!  So we decided that I would finish the last round today of the original chemo regiment.  So I get 2 more weeks before my next treatment!!!  YAY!!

This won't last though.  In 2 weeks, I will go in and start to get 12 weeks of Taxol.  This was the next drug regiment, but it was supposed to be bi-weekly.  He has decide that he will lower the dose and make it weekly to be a little more aggressive.  Add into this treatment another drug, carbo-platinum every 3 weeks.  So a total of 12 Taxol treatments and a total of 3 carbo-platinum treatments every 3 weeks.  Both of these drugs hardly cause any nausea and should not impact my blood counts.  Therefore, I will be fatigued, but from treatment and not from counts.  So I am hoping to keep my spirits up like this week and trudge through!  The good news was my counts today were higher than pre-chemo so they continue to be impressed with how I am handling this!  I know it is the prayers!  So keep them up.

Last bit of good news!  We were driving home today and I received a call.  "This is Edwards Hospital and we are calling with some good news".  WHAT?!  Did I win something?  What hospital calls and says this with what I'm going through.....Was I cured??  Well, turns out, my genetic testing is back and I am negative for the BRAC1 and 2 genes.  What this means is my left breast is at no higher risk than anyone else to get cancer, and I am no higher risk at having ovarian cancer than anyone else.  HOORAY!!  No hysterectomy anytime soon.  But for now, the left breast will be leaving my body as soon as possible.  This also helps with my sisters decisions.  They should not have to make the decision to find out about their looming breast cancer risks through this test.  They do have to start getting mammograms though, but that is easy!  Their advise was you start getting tested 10 years before the youngest person diagnosed.  Great news, but it does leave my hands in the air because my diagnoses is now being chalked up to bad luck!  Yes, bad luck:(  

Last piece of information for tonight....Whitney has made the decision to stay with us through January.  She has been working hard all week to figure out her classes, loans and rent and it has worked!  She will take the semester off.  Don and I will assist her with her rent and she will help with the kids and is going to try to get a part time job. I didn't think when she came in June that this would be so hard.  We know there are tons of you close by that will and could help.  We appreciate that and need you around:)  But having her here helping with the day to day, making our dinner and getting up at night....I can not even explain in words.  She has also helped me emotionally and I seeing as I have never felt like a selfish person, I am now, but I think I have a good excuse. There is nothing like a sister and she is in a position to do it.  Don and I and the kids will be down in Asheville inMay 2014 to watch her walk down the aisle and get her degree!  

So I will close with thank you for the prayers!  They are working!!  Keep it up!  Also, one more thing!  Thank you to all who have posted pictures in your shirts.  Lisa and several others behind the scene people worked really hard on these.  I have awesome friends and family and brag about you all often!  Thank you thank you!  

Love you all!


Sunday, August 5, 2012

Bouncing Back

It was a quiet Sunday morning in our house.  Don was up at the lake for our annual "kid -less" weekend.  Hopefully everyone had a great time!  I am sorry I missed it and look forward to next years!  The boys were with Don and Wendy since yesterday early afternoon.  Whitney and I spent our afternoon yesterday just relaxing, watched a movie and then did dinner.  I woke up this morning and my throat was a little dry and scratchy, but I  feel good.

Yesterday before the kids went with Wendy, we took them for their pictures.   The boys did great despite the fact that Ryan decided to have an EXPLOSIVE diaper on the way there.  This incident went to show how different I have become from a month ago.  A month ago, I would have panicked and felt like the pictures were ruined because of this.  Not yesterday, I just rolled with it. He stunk so bad and his jeans belonged in the garbage after what happened, but we got through the pictures with huge smiles and laughter and even though we all knew he needed a bath!  Just memories, we will always now remember Ryan pooped his pants before those pictures and stunk so bad!  That is all!

I have felt pretty good since last treatment.  I have noticed my bad days are not Sunday and Monday after chemo like they warned me about.  Mine have proven to be Monday and Tuesday.  Those days I'm more tired, weak and maybe impatient?  Don, Whitney or Justin do you want to chime in here?   I can tell the more treatment I have, the harder it has been to bounce back to "Amber".  I was thinking about this the other day and it brought me to tears (it doesn't take a lot), but I thought of older individuals going through chemo.  I'm 33 and it takes me literally almost a full week to be back to where I should be.  How in the hell does an older individual "bounce back"?  I try to use my age to keep me strong and to keep up the good fight, but lets face it, I don't feel like a 33 year old anymore.  

Treatment after treatment I notice new things side effects, but mostly it is the fatigue and feeling of weakness.   It is understandable, but yet so frustrating!  I'm 33 and want to be super mom, super wife and super business women. I try to ignore the random side effects and fool myself into thinking I'm not tired, but the side effects seem to always win these days and it is so annoying! Still I will not give up and I'm not willing to give up on mastering my super hero skills so this past week, I have decided to add to my army to fight this stupid disease.  I have added food and meditation with the help of an old co-worker who left Porsche to teach yoga and meditation.  I'm learning a lot from her and look forward to learning more as we go.  

This should be a quiet week until Friday.  I am scared of course to go on Friday, but understand that Dr. Hantel has a back up plan.  Part of me feels like we are going on that plan and have tried to prepare myself for that.  It will be really difficult to do weekly treatments since I feel like I need that week in between treatment to "bounce back", but on the other hand, I don't want to waste anymore time and if the current treatment isn't doing what we want, let's move on.  So prayers this week for shrinkage and strength!