Ups and Downs this week

OMG - I can't believe it.  I have been up since 2:00 AM - updated my blog and guess what it is in stratosphere - where oh where did it go - I haven't a clue.  So I start over - the story of what life has been about lately!

What a week it has been.  Chemo officially started in full force this past Wednesday.  I have learned that chemo is different for everyone - it depends on the cancer, it depends on where it is, it depends on what type.  My chemo is a cycle of 28 days and I have to have 9-12 cycles - so the journey just begun.  Each cycle has me taking a drug called revlimid for 21 days - what a hoot to get this medicine - has to be mail ordered, have to promise not to get pregnant, have to promise (and get this) not to give to anyone else - who would want it = oh my the world of prescription drugs.  I take dexadrone 1 day per week - 10 pills each time and then on Days 1, 2, 8, 9, 15 and 16 I have an infusion of carfilzamib - the trial drug (oh it is a good drug the trial has to do with the timing of the drug - it is usually given as second line of defense, but the trial is to see what happens when you give on the front line).  My doctor was glad I got into this trial.  After 4-5 cycles of this, I will have a stem cell transplant and then 4-5 more cycles - so the journey as I say is just beginning.

The best thing about Wednesday - Deb Livingston my friend from work came over Wednesday about 5 bearing dinner - yummy yummy beef stew, rolls and cookies - oh what a relief.  Didn't worry about dinner for two days - Jeff was a happy camper.  I was starving and didn't feel like cooking.  I have helped people out in the past with this but never knew the impact.  I wasn't sure how I was going to feel about it - but I am loving it.  It was a great help so thank you Deb and Angela.  They also brought me the most gorgeous tulips - which I will take a picture of once they bloom - my favorite color - PINK and they are blooming so next time picture will be coming.

I got cards and texts this week - oh the smiles they brought - it has been awesome.

I'm not a person who likes attention but I want everyone to know that the outpouring of love has been what has helped me through this past month and a half and as I go through this I know it will help me.

I took off this week from work - yes I know I just had two weeks off for Christmas break - but that is what it was a break.  I had a great first week but the 2nd week was not so hot - I was a physical and emotional wreck.  I couldn't get the pain under control and I wasn't sure what chemo was going to be like - so I succumbed and took the week.  It has been a good week despite everything.  I know now what to expect from chemo - Dr. Slease and his staff have me set up and everything is coming into place.  I have a dose of anti nausea meds each week and wow!! no nausea - still have weird taste buds - but no nausea.  I am exhausted which I shouldn't be but hey everything that is expected to happen - just tell me and the opposite happens.  I am having nightmares and can't sleep at night maybe because I was sleeping during the day.  Crazy though - I was up all day today busy getting some things done and I have been up since 2:00 AM.  Didn't fight it just came downstairs and decided to do some things.  Hopefully once I get this done I can get a few more hours of sleep.

I want to take a minute to thank my wonderful family doctor and his staff - Dr. John Kehagis - he diagnosed me within 72 hours back in November - unheard of.  He believed me when I told him I was feeling different than I ever had.  I am a patient and not a number - he knew something was off from my blood work and found it.  I am blessed to have the best family doctor - if you need a new one I highly recommend.  Then there is my therapist - Jenny - without her I couldn't have even started this process.  I cherish my sessions with her - she has been a lifesaver for 2 years and my life is so much better.

I had great plans prior to my diagnosis - I was going to do some heavy cleaning between Thanksgiving and Christmas and the house was going to be in tip top shape - hahaha!! never happened.  I have taken the plunge and have someone coming over this weekend hopefully to help me get this process started and moving forward to help me keep up with the cleaning.  I love to purge and organize and keep an attractive and neat home; but for the last two years I have not really done that and was on a kick to get my living room, office and spare bedroom whipped into shape - as you know I was dealing with my mom's house and her stuff is all over and I just got overwhelmed - good news I have started purging and organizing - hopefully the cleaning will get done with the help of someone else.  It felt so good today to purge my pots and pans - Jeff bought me a whole new set for Christmas and I put them all away today and purged the old ones - looks just delightful in my cabinets.

The best thing this week - my Christmas list is complete for others.  I love the hustle bustle finding the right gift for some special people and other than my family and two closest friends - I did nothing but it is done now and I can't wait to play Santa and then my living room will be a little less cluttered.  A good thing for me.

I am going to be purging lots of my Longaberger - a long time love of mine but I want to downsize - not sure how I will do it perhaps a home sale, perhaps a Facebook page, perhaps just post pictures and you tell me what you may want - not looking to break the bank at all - just want to purge.  I will keep you posted.  I love my Longaberger but I just want to make room.

 Anyone want cookbooks - I have a giant box of cookbooks that i will donate or give to anyone who wants to pick them up.  Any ideas.

So first going to do some purging then can't wait to get my office done and work on my quilting and some other projects I have going on.

I am going back to work on Monday and can't wait - Monday and Tuesday full days, Wednesday and Thursday 1/2 days because of chemo and Friday will be decided each week - so far I only have one scheduled off because I have a doctor appt already.  I am hoping to be able to be there all day but if I have to start 1/2 day on Friday - that is ok.  Seems like day 3 of chemo weeks is the worse - again today I was exhausted and I didn't work all week so I just have to play by ear.  I miss my students, I miss my peeps - I just miss it.  I am blessed to work in Appoquinimink - everyone has been awesome.  A big shout out to Linda Vavala in HR who has guided me through the FMLA process - thank you so much for all your help and thank you Mr. Fallis for granting my intermittent leave.   Knowing the support I have from our district has been such a high point.

I have gotten lots of cards and smiles and texts this week - have kept me going.  My board is filling up and I love it.

I went to chemo by myself on Thursday and I was proud of myself - it was a small feat - I am lucky my infusions are only 1 1/2 hours so I can handle it - the driving afterwards was ok - just exhausted when I got home - staying up on Thursday helped a lot - because I actually slept until 7 on Friday morning.

I know I am rambling right now - not really writing just putting my thoughts down.   It is about me and my feelings - my goal is to make it about the disease and what I can do to put this disease in the forefront.

As I look back on the last month and a half since my diagnosis - the ups and down have been there but today I am up and looking forward to this time next year but am going to take the journey a day at a time.

Take the journey with me as I go through it - remember your smiles and cards and texts are what helps - keep them coming.  The trials and tribulations are going to be fun and ones that I can't wait to experience as I kick this disease and help bring it to the forefront - right now about me but I'm working on making it about finding a cure so that no one has to go through this.
Follow me as my journey continues!!

Remember - SMILE it brings happiness and I know that for sure.

Until next time....

My guardian angel

Wow!! It is real and isn't going away...

My life is scheduled for the next month.  This is a good thing.

It has been rough this last week - my emotions have been up and down.  Some days I don't even know where it comes from - but I just cry.  I have been anxious - I have been having anxiety attacks - I don't think I have been very nice to Jeff some times.  I just wanted my life back the way it was.  That isn't going to happen and I am facing it.

I have been off this week from school- to try and get myself on track and be positive for the chemo.  I also want to try and control the pain.   I think it has helped in some ways.  I slept most of this week which means I was tired.  The pain has been bad but I have been wearing my patch and I have been taking the oxicodone more regular which does help.  I just don't like taking it.  I also don't like gaining weight.  I was doing so good before all this happened but the scale keeps going up and I don't like it - not by a lot but it goes up and makes me mad.  Hopefully soon I will be able to feel like walking or excessing just a bit - getting some activity.  Just have to be careful.

I have cabin fever but the weather has been so terrible I haven't been out of the house since Sunday which I think made me stir crazy.

I have had smiles though - some very nice cards that cheer me up lots, some great texts which cheer me up a lot - just the little things are helping me smile.

Yesterday I was anxious all day - I just didn't know what the chemo was going to do to me.  I have heard so many horror stories and I was scared to death what was going to happen.  Sometimes the worse doesn't come true - and to be honest it wasn't too bad today.

Didn't sleep well last night but I think it was for two reasons - I was in pain and had to take meds in the middle of the night and I was anxious about today.

This morning my appointment was at 9:45.  I was up at 6 and at 7 had to eat breakfast and take all the meds - 16 pills this morning - yuck.  Tomorrow it is only 6.  I will be taking meds for the next year every day - some days 16 and some days 6.  One of the meds is 10 pills per day - 1 day per week - high dose steroid and should help with the pain.  Yeah I hope it does.  Got to Dr. Slease's office at 9:40 and then had to go get blookwork done - can you believe I cried simply because I didn't know I had to have bloodworm - thought I forgot and it was my fault but yeah it wasn't me.  All ok  went and had it done.  Then had saline drip for 1/2 hour and then dose of great anti-nausea meds and then infusion of the chemo drug - I'll get that name for you next time.  The infusion was about 1/2 hour - 35 minutes.  Not to bad.  So far the only side effects are some hot flashes and then being cold and being very tired.  Slept for about 3 1/2 hours when I got home.  Not much energy either but that is ok - I just took it easy.

I miss school, I miss my friends and I miss my students.  I really don't like to be out but I thought it was best for me to be out this week and get myself prepared without the hub hub of the holidays.  The hardest part besides missing everyone is making sub plans but I think it went ok.

My schedule is set for the next month - which is great.  Martha has me all set and my schedule is on paper and I know exactly what I have to do each day until February 5th.  Each cycle is 28 days and I have 9-12 cycles to do.  Will be having chemo infusion, seeing doctor, having bloodworm - all of the above or just some - every Wednesday and Thursday for the next 9-12 months.

I am going to try and work on Monday and Tuesday full days, Wednesday and Thursday 1/2 days because my appts are after 11 on those days and Friday will play it by ear.  I have to see how I handle everything and my hope is that I do good - so far based on today it hasn't been to bad and I think I am going to be ok.

The fight is just beginning but today is the first day since November 25th that I feel positive and know that all is going to work out.  I am blessed to have many people in my life who care about me and are supportive of this journey.

Love hearing from everyone - the texts, messages and cards are the best ever and keep me going.  My card board is getting filled and I love it.  A big shout out to Jeff - I know its hard on him but he is doing everything for me.

Thanks everyone for being there for me.

Remember to smile for me and for you !!

What a pretty view I have for my treatments

There is a Plan....

I haven't posted since the 28th - been ups and downs.  I'll catch you up.

Sunday - December 28th

Mall Shopping just to get out - too much cause came home and was in pain.  Pain is excruciating at time because I have a hard time controlling it and working through it.  Yes I am a baby.  Problem is with the fentanyl patch and when I have to put a new one on.  I have the tendency to take off the old one and not put a new one on because I get sick.  Not the thing to do - I will never get used to it.  Sunday night - finally put on a new patch and stuck through the nausea.  Yuck - I hate it and I hate how I feel.

Monday - December 29th

Been talking about a new car - something more comfortable to drive - since this diagnoses I have a hard time in my car sitting for any period of time - car is low and I have been wanting to get a small SUV - decided on looking at a jeep but really wasn't sure - looked Sunday night on the web and found one at BCP in Smyrna.   Jeff took a drive down on Monday to see it and then we both went down - pretty much what I wanted and I feel in love with the car and the way it drove.  I decided to take the plunge and bought a new car.  What am I thinking - I'm thinking I like it and wanted to be comfortable.

Tuesday - December 30th
Emotional!! Only word I can think of.
Doctor appt today and overwhelming - THERE IS A PLAN.
Chemo will start - Dr. Slease wants it to start on Monday, January 5th; not going to happen because of holiday.  Overwhelming - thought it would be couple times with chemo and then it would be over - hahahaha - that isn't the case.
Today I was told the ins and outs of the chemo and how it is administered - there are two different trials and depending on registering for chemo - it will put me in one or the other.
Won't find out which one till later in the week.  Went through the paperwork and lots of it there was  and financial issues and all I did was break down.  Day was terrible and all I did was cry in the doctor's office, in the car, at lunch, at home - you name it I cried.
Weird - because of one of the drugs I have to take during chemo - I had to swear on the bible (not literally) that I wouldn't get pregnant - what a hoot - me get pregnant same sentence - not going to happen.  So..this is happening - need to wait to registration - will hear later in the week.
Saw mom today and wasn't thinking of her - only me - and I feel bad and guilty about it.

Wednesday - December 31st
There is a plan and today was a good day.
What a great day today was - stayed home all day but had the loveliest visits.  Erin Lovergine and the twins - Kayla and Rocco - came to visit me today and what a smile they put on my face.  It was so much fun.  Erin is a doll and made me feel so wonderful.
Laurie came to visit and we had such a nice visit.
Good news - Martha from Dr. Slease's office called today during my visits and CHEMO is starting on Wednesday, January 7th.
Chemo routine - iv infusion chemo - will take place on Wednesday and Thursday.  Take about 2 hours the first time - iv saline solution, then iv infusion and then more saline.  In addition, dexadrone and remefid (weird drug).  9-12 cycles of chemo - each cycle is 3-4 weeks - so the journey will begin and we have a plan.  Just want to get it started so I can get rid of some of the pain.  Dr. Slease, Sandy, Martha - once the chemo starts the pain should be alleviated - will take some time but it will be going away for the most part and there shouldn't be any side effects to speak of  Haha - what a joke - bet you I have some but hoping I don't.

Still having an issue eating and keeping things down.  Still have pain but haven't been stupid with pain meds.  Trying to keep up with it.

Glad I had these two weeks off to rest but not ready to go back to school.  Too much anxiety with what is going to happen with chemo - the unknown makes me scared.  There is a lot of unknown by me - Dr. Slease is very encouraging and I have tried to be positive.  Just want to keep positive and know that I will beat this - the length of time is a monkey on my back - can't believe it will take so long to get back on track.

Pictures are coming and more thoughts are coming.

Sending positive thoughts to all my friends - love to hear from everyone - Have a wonderful 2015.

The plan is in place and can't wait to get the party started.

Ruby - our new family addition

Kayley and Rocco - my smiles for the day

Some more smiles of my new friends