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.
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
I share your love of a neat, well organized home, and (sadly) your current status of "overwhelming mass of chaos sprawling everywhere." If you need help with your clean & purge, just let me know. I love doing that! (Friends have asked me to do their offices/kitchens/dens for them.) Then, when you're all healthy & energetic again, you can help me shovel the mess out of my place. :-)
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