A chemo day in the life of a diva

I have had several people ask me what chemo is like.  I am sure its a bit different for each patient but wanted to share with you exactly what it is like for me.
It always starts the night before.  I have to pack as though I am going on a day trip.........food, beverages, pillow, blanket and things to do to keep me busy.  I also pick out a cute outfitas I mentally like to tell myself I am going on a date so I like to look nice.  I just feel better when I look my best.  I am only allowed one person in the room with me at a time and it is usually my Dad.  Its a long day for both of us but we make the best of it.
The morning of chemo starts early.  I like to take a long hot shower since I know I want be able to shower for a couple days due to the chemo pack that comes home with me for 46 hours.  Then of course breakfast.........hair and make up LOL
Dad drops me off at the front door at Virginia Mason downtown by 8 or 9am depending on our appointment time.  Then he goes to park while I stand in line to check in downstairs.  We meet at the cancer institute which is on the 2nd floor.  It always has a bad odor to me when the elevators open up.  We are not allowed to wear perfumes or have any strong smelling foods since chemo patients easily get sick from odors.
I check in at the desk happy go lucky like I am checking in for a manicure or hair style. LOL. The gals always know me by name and are happy to see me.  I then sit in the waiting room and am usually sadden by the number of people that are sick and fighting for their life.  Its just not a happy place but the staff makes it pleasant.  They are angels in the building or thats how I see them anyway.
Before anything can happen they have to put me in a short stay room to access and flush my port in addition to pull all the blood they need.  The results from the lab determine whether I am healthy enough to even proceed with chemo treatment.  It usually takes at least an hour to get the lab results so its mostly a waiting game.  Really no sense in seeing Dr until he has results from which he can order the chemo.  Thats right no chemo is ordered until labwork is in.
They have dozens of little rooms set up for chemo which is where we spend the entire day.  There is a tv and wifi plus a little fridge and one recliner which I snuggle into and one chair for my Dad.  I always want to decorate and paint the rooms to be more homey but that doesnt happen.  There are what they are and its sad there is so many.  Always a reminder to me that too many people have cancer.
Im lucky the staff is so amazing.  Even the nurses that are not assigned to me that day pop in to visit me.  They always make me feel so special.  Its all these distractions that help the time pass.
For me every 10 weeks is a big check up so on those days I get a chest xray and a ct scan prior to getting into my room for the day.  I am always anxious to get my cancer marker number which is just a little piece of the puzzle indicating any progress or lack there of.  I am always thrilled to hear when the number is down but this go around sometimes the number is higher than previously so I just have to be strong and shake it off.
When Dr P comes in it is usually a very short visit unless I am not doing well.  He always takes time to be attentive to my needs and questions.  I am sure he does not like to get too close to his patients since most dont survive but I know over the past year there is a special spot in his heart for me.  This has made it easier for me to trust him that no matter what we will figure out a way to get this cancer in remission and buy me some time.........quality time.  He sees the world thru rose colored glasses just like me so our optimisim bonds us.  It is my goal with his help to be a voice and make a ripple with the pancreatic cancer organization.  I want to help others and provide hope and help with awareness.
OK back to the chemo room..........by now we have been there several hours and anxious to get started.  We know the sooner that first cocktail gets hooked up the sooner we can go home.  Once Dr P has ordered the cocktails the nurse tgives me about 7 pills that somehow play a role in me getting treatment.
The first cocktail arrives and it is verified every which way but loose.  They leave no margin for error.  Once hooked up it takes 2 hours to drip.  I dont feel anything it is just ans IV that is hooked up to the port in my chest.  I learned the hard way last year not to do chemo thru a vein in your arm.  My nurse checks on me frequently and is always just a beep away.  I have a panic button to hit if I have any problems.
By the time my first cocktail is getting low the 2nd one arrives.  This is the cocktail that has caused me so much havoc so there is some anxiety that preludes it getting hooked up.  However Dr P has lowered my dosage and I did OK last time.  This cocktail once hooked up drips for an hour an a half.  By this time I am hungry and have broken into my snacks or at least lunch.  I have to eat something every 2 hours to keep my tummy running smoothly.
Sometimes I have my laptop with me and will kill some time there and sometimes I sleep.  Chemo affects me differently everytime.  Its never the same journey twice.
I always have a visit from Dr Meghan.........I think of her as my pain and symptom management coach.  She is an absolutely amazing listener.  She gets inside my head and is able to coach me thru the mental part of this journey which honestly is a bigger battle than the physical.  If your head is not in the right place there is no way to beat cancer physically.......just no way.  I feel like she understands me and more importantly she expects me to stay true to myself which means remaining positive.  However she understands and shows compassion when I lose my way.........she is like a flashlight and shows me the way to win.  I will never be able to thank her and Dr P enough for all they have done to save or prolong my life.
Sooooo back to chemo.......they even have staff or volunteers stop by with activity cart wiith candy ice cream movies cards magazines to help fill my time there.  It is really nice.  By the time my 2nd cocktail is done I am really ready to go home..........it is late in the day by now and fortunately the 3rd cocktail comes home with me in a fannypack.  It goes everywhere I go for 46 hours.  I generally dont like to go out in public as fanny packs went out in the 90s LOL and I dont like to attrack that kind of attention.  Funny I am quick to share my story with anyone but dont want everyone knowing I am sick.  I like to pretend I am healthy.......its part of faking it until you make it attitude.
As I mentioned I can not get my port wet so no shower while I am on that 3rd cocktail.  We drive to the hospital late on the 2nd day following chemo to get disconnected.  It only takes minutes to disconnect and flush my port so no appointment needed.  I just pop inand out quickly and usually run to take. A shower when I get home.  I am tired more than usual when on the chemo pack.
Side affects to these cocktails are all over the board. I never know from moment to moment how I will feel so its hard to plan anything concrete.  I am simply living in the moment as best I can..........any time I have I know is borrowed time so I am just savoring the people and moments in my life!!
LIVE WITH PASSION!
DJ

The perfect day

Have you ever woke up to start your day and expected it to be perfect?  Of course not..........we might expect to have a great day because of a vacation or time out from the realities of life but its crazy to imagine the perfect day all the way down to the tiniest detail.  But a perfect day can happen whether you believe it or not.
I woke up sunday expecting to spend a great day with the man I love but it was unusual to wake up and not be sick.  I took full advantage of the beautiful morning and jumped in the hot tub with Tim.  It was my first time in a tub since getting my dr. Permission over a month ago.  Although I am not allowed in a public tub I had the greenlight to sit in a well cared for private tub.  Tim sits in it almost daily.  I savored the jets beating into my frozen shoulder and words can not describe how therapuetic it was.  It was the perfect morning.  Tim sipping his coffee and us enjoying much needed quality time together.
The day was hot and sunny yet enough breeze to keep me cooled down.  We drove to seattle waterfront and headed to fulfill one of my bucket list items and ride the great wheel of seattle...........just as we got in front of the wheel a gal pulled out and we slid the truck right in.  It was better than handicapped parking I just was in ahhhhhhh.
We got in line and I just enjoyed the ability to stand in line and exchange chats with the couple in front of us.  I was so proud to stand about 30 min or more and get to the front of the line.  Trust me you cannot appreciate standing in line until you are confined to a bed and toilet.  I was joyed beyond measure.
Then they opened up bubble #13 my lucky number and in we jumped with the nice couple ahead of us.  As we enjoyed the ride we learned they were celebrating her bday which was the following day.  I insisted on taking a lot of pictures of them so they would remember the special occassion.
Tim gets his daughter on the phone so she can enjoy the ride with us.  The view was priceless and I was just in heavon savoring not feeling sick.  At the top of the wheel Tim askes me if I am going to beat this cancer and I replied with enthusiasm of course I am and he pulls out a ring and says because I want to be with you a very very long time.  With tears of joy I put the ring on and felt like the luckiest girl in the world with a million reasons to live sitting right next to me.  It was a great day on the great wheel.
We proceeded to west seattle for dinner on the water and I am on such a cloud I can barely speak.........just such a beautiful day.  We headed into the restauruant to be surprised with my best friends who were very instrumental in making this engagement a dream come true.  Champagne which I was not drinking was flowing and we all shared a toast to this crazy little thing called love.
To be surrounded by so much love on such a perfect day down to the tiniest detail was just incredible........made me realize how much of the tiny detials we do take for granted in a day.  Sometimes its those little things that add up at the end of the day that make it perfect.  Why we spend so much thought into what went wrong in a day is so senseless.
I am on this journey for a reason.  A reason bigger than you and me but meant just as much for you as it is me.  I am sharing as much as I can all the good the bad and the ugly as I can so you can learn with me.
So stop and think about what is perfect about your day and it will astound you what you learn.
I am the luckiest girl you know despite cancer........remember that be happy!
LIVE WITH PASSION!
DJ

Back to the grind

Well after 3 weeks off chemo due to blood issues it was back in the saddle on tuesday.  I don't think it went so well.  My body is rejecting the 2nd cocktail for some reason.......they tried twice but both time my stomach went into an anxiety attack so I only ended up with just under one third of the dosage.  I do think that is the cocktail that causes all the diarhea ans nausea though since I have not had any of those problems since treatment on tuesday.  Dr P says next time he will reduce the dosage and see if I do better.
You see sometimes no matter how good your plan is you have to recognize an obstacle that is in the way of your goal and go around it.  Any plan needs to remain flexible which means you have to be flexible too.  Keep your eye on the ball and admit and make a change if something is not working you toward your goal.
I can see so much clearly now that I have a plan.........it is sometimes hard to accept my best outcome is remission and not a cure but I will be so grateful and do so much with the remission time it will even amaze me!
I want to finish my book by the end of the year I am almost half way done but have to go back and revise now that I am on this journey again..........I have learned even more and have a better grip on how I can share this knowledge to help you in your life.
We all have battles in our lives and they can be won you just need the passion and spunk to take them on no matter how big or small.
I am excited about the future and you hould be too!
LIVE WITH PASSION!
DJ

SURPRISE!!!!!!

Although I am back to chemo today after  4 weeks off due to blood issues and concerns it feesl good to be getting  back to the grind.  Taking too much time off defeats our mission and allows the tumor to ernergize itself and start to grow again.  My cancer marker is down to 342, up a bit from last week but given I have not had treatment in four weeks, its to be expected.

My mission and Dr. P's is to have this tumor all taken care of so I can get my life back by the end of the year and be the first two imer face of home or come back player of the yeaar for the big gala fundraiser for pancreatic cancer in June of next year.

Thank you to my internet donar I know it will make my life easider when at home being able to communicate from my pc rather than my tiny phone................you have made a big difference and I wish you all the wonderful karma (the good kind)that you can handle.

Is it possible for you to even imagine what it feels like to be in my shoes and know this level and depth of gratitude?  My cancer has  brought out the best in all of you and you never cease to amaze me with your generosity,,,,,,,,,Ilook forward to  returning all that kindess to you when my health is back.

I am back on the chemo track andfeeling the love!!!!!!!!! xoxoxoxox
LIVE WITH PASSION!
DJ

Through thick and thin

Friends........every one of you reading this is going through some type of battle.  Now you may not think it is as big as my battle with cancer but it probably feels just as big........I know its a distraction and stresser in your life.  I hope you all know that no matter what I am going through I am still your friend and want to be your friend which means being there for you just as much as you are here for me.  Please don't deprive me of the joy of being your friend.......no matter how sick I am I still love you and want to be here for you no matter what.............through thick and thin.
I recently shared a funny story with my office about living IN the moment as best you can.  My amazing parents are up here from Alabama temporarily to take care of me again with this round 2 of cancer.  They found a cute little studio condo to rent that is not far from where we live.  Sooooo 73 year young Dad is driving my car.....a red convertible.  I asked him one day why he doesn't put the top down and he responded "It would mess up my hair" LOL. We laughed together but I realized at that moment that the metaphor was important enough to share........Life is too short to NOT drive topless!  We really have to rewire ourselves to truly LIVE in the moment and not take for granted that tomorrow will just automatically come.  Why put off till tomorrow what you can enjoy and say to make someones day today?
I also need to reach out and say a ginormous thank you to Chris and Cheryl for my special ring............I think I will call it my journey ring.  I was in tears at the jewelers when he told me of your intervention.  Your generosity never ceases to amaze me and I can not thank you enough for being my family.  Love you more than words can express and will remember that moment you gave me forever........can not wait to show you the ring when it gets here!!! 
Focusing on all the joy you all bring to my life not only makes me cry but inspires me to fight even harder so I can enjoy more memories with you.........Do you think if I write the Ellen show I could convince her to send us all on a celebration cruise to celebrate OUR victory in Novemer or December.  I just need to win the lottery..............wouldn't it be fun to all be on a cruise together?
I know my priorities are different than yours with death knocking on my door.........but I really believe yours should be the same......think about it!! For example what would you do differently if I told you that you would not be here a year from now........or even a month???
I don't think its life I am so inlove with.........its you!  I am so grateful to Val for coming up with Saturdays with Dawn where friends come over from 11am to 1pm and we visit and its just a priceless time together plus it gives me something to look forward to every week.......during chemo the quality of my life is well honestly not too good but friends make the world go round!!!!
LIVE WITH PASSION!
DJ