Thursday, September 5, 2013

Long wait...

It's been a LONG time waiting for this day. I wanted to wait and write this blog more so on my "1- year" diagnosis date anniversary...but couldn't wait! This might be a repeat to some of you...others you may not know "my" story... Looking back to 11.30.12 it seems like only yesterday...but on the other hand it seems so long ago.  I sat in my hospital room at Banner Thunderbird getting the diagnosis of "C" again...this time it was not breast cancer I was going to be dealing with...it was much more of a fight I was up against...pancreatic cancer.  With some of my family and friends gathered around my bed...I knew what needed to be done.  All I could do was see my baby girls' faces and knew that they both needed me.  It had been just the "3" of us by the time I was diagnosed...we were adjusting to life not easily...but as strong as we possibly could. 



I hadn't been "feeling" well since September but related it to all that I was going through...then came the gall bladder surgery...still didn't solve my "issue"...so on that Thanksgiving weekend I knew something was seriously wrong as my body began to itch (increased bilirubin) and my eyes were as yellow as urine (I know-gross)...My Mom came over to watch the girls who were by this time both asleep and  I was taken to Banner Estrella by "my" Ally-Kat...I knew in my heart something was seriously wrong and I might be up for a stay in the hospital...just didn't expect to hear what I would hear next...

It was that sweet-petite preggo ER doctor that took my medical history and all my signs and symptoms so seriously.  She ordered an immediate CT scan...it was then that she asked that A-Kat move her purse so she "Dr. OnTop of Things" could sit down and be right by my "bed" that was in the hallway-yes that's how crazy busy the ER was on that particular night. 







As A-Kat and I joked around and took self portraits of ourselves sharing my bed together and then I was taking pictures of my nasty-yellow eyes to pass the time...I had that nasty gut feeling and it wouldn't go away. As tears began to form in the doctor's eyes...I knew she had news that was not going to be what I wanted to hear.  "Jamie, we have found a mass on your pancreas...with your cancer history we are very concerned...I want to admit you for further testing"...sitting there now with a look of a deer in the head-lights...I was in shock. She proceeded to give me 2 options...do I want to stay at Estrella, or be transferred to Thunderbird?!  My answer was pretty immediate...I knew that my oncologist and her team, along with my surgeons work out at T-bird. Next came by other option...did I want to be transferred by ambulance (didn't know if insurance would cover it)...or ride with A-Kat who by this point had been up for 29 straight hours. Well that answer became clearer when the RN on shift working with Dr. On Top of Things literally ripped her badge off...handed it to A-Kat and demand that she use it to swipe it for coffee...that she wanted to do something and that's the least she could do. 



It was off to Thunderbird where "after" hours and weekend staff is short...so you follow the signs where we needed to be or at least where we were told to go.  I remember being told to go straight to the main registration..but we would have to take the hall through the ER at T-bird...the ER registration gal insisted on we pretty much take a number, have a seat and we will be called when available.  I wasn't being the "patient" patient by this point. I wanted to rub her body in poison ivy and color her eyes with a yellow sharpie and maybe she would understand how my body itched so bad...and my eyes looked so abnormal.  FINALLY...A-Kat speaks up once again and says...we were sent here from Estrella..."she" (that would be me) is a direct admit.  Oh-Duh! Light bulb turns on in the lovely registration gal's head and it all clicks-oh yes...go directly to registration-wow! Never been so happy in my life...after waiting for a good 20 minutes which seemed like 2 hours...we were moving...

Then what seemed like a whirl-wind of events...well actually that's what really happened.  I was scheduled for 5 out of my 6 days inpatient for different procedures...to determine if it truly was cancer, location and if it was primary pancreatic or breast cancer that had metastasized. 2 ERCPs, U/s, CT scans, MRI, etc, etc, etc...I may have been in there for 6 days...but round the clock I had support from those that love and care about me and they helped my long days and nights seem shorter...and kept my mind off a lot of what I was going through and wondering about all the "what-ifs"...
I still say I love all my nurses and staff that I had at T-Bird...BUT...my angel nurse that sticks out in my mind and  the one that sat on my bed and held me as I cried after receiving my diagnosis...Thank you!!!



Yes...very jaundice indeed...but happy to have had some of the best doctors and nurses.  Reading my medical records now...I see how passionate my GI doctors, my oncologist team and the surgeons were.   Here they had at the time a 34 year old...Mama to 2 little girls, a nursing student and someone with a future ahead of her...who was just given the diagnosis of  "PAN-CAN"...they didn't know what to think, the prognosis, or if I would be able to be around for another year of holidays.  Instead they gave me encouragement and Hope...that I could do this...I know in the back of their minds there could have been hesitation...but they NEVER let that show. Instead Dr.P (head of GI) shed tears as he began a procedure, Dr. G. came with his handsome smile, and Dr. V (not bad on the eyes) would check on me each day...I knew that these trained men truly had a passion for helping others and took my care and well being very serious.  They knew what was best and what needed to be done...all of course depending on my "liver" biopsy...they had tried not to "worry" me...but they had found a spot on my liver. So once they determined there was "C" on the pancreas...I was off for a hot date with Dr. Drew...ha! He would be the one performing my liver biopsy...I remember the beginning of our "date" going something like "Well Jamie...I am Drew it is very nice to meet you...sorry we have to meet under these circumstances...hopefully next time it will be different...then I was off to la-la land for a minute only to be woken by his voice saying...I just can't get to the spot on your liver...it is too close to your lung and I can almost guarantee I would end up having to give you a chest tube. The risks are too great...so back to my room I go. 

Dr. V. came back in and informed me that I would be discharged and seen at Good Sam by the famous surgeons. I said ok that is all nice and dandy...but I want a port placed in my chest before I go home...if I am going to get chemo...I am going to be prepared.  So it was placed...and a few hours later it was off to my home...to sleep in my own bed, to hug my girls a little tighter and to pray harder than I ever had before. 

Then it was onto Sunday...just 2 days after being d/c'ed from T-Bird.  I knew that I wanted pictures of the girls and me...and know that pictures are worth a 1000 words...if this outcome not be favorable...I would want the girls to have pictures of "us" -Thank you Jobrina again for such a short notice and capturing us at such a vulnerable/emotional time.


Well the next day couldn't come soon enough...I had an appointment with Dr. Koep who's associate is Dr. Brink and I just so happen to know his sweet sister...so they pulled some strings and that is why I believe I was able to be seen so soon...sitting in the exam room and meeting these doctors face to face was almost like getting glimpse of heaven...I knew that my life was going to be in their hands...they had performed numerous surgeries that saved lives...from transplants...to the whipple surgery (if I was able to be a candidate...all depended on the outcome of my liver biopsy and Dr. Koep would be performing that-STAT).

Dr. Koep didn't mess around...I was in his office at 1pm and he mentioned that he wanted to take me to Good Sam right then and there and do the liver biopsy on me...ugh! My heart sank... literally was just home from the hospital for not even a full 48 hours and now this...he informed me it would be out patient. Oh praise the Lord...the books were full and I would have to come back the following  day. So my Mom drove me to Good Sam and I was prepped for yet another procedure...seemed like my life was all being lived in la-la land...as I was drifting off to sleep yet again. Procedure didn't last long...but the next few days to follow took FOREVER...that was to get the biopsy results.  I got a personal phone call from Dr. Koep a few evenings later...the biopsy revealed that it was NOT cancer...the pancreatic cancer had not metastasized-oh thank you dear Jesus.

My next step was to have a PET/CT scan...we needed to determine if the cancer was only on my pancreas or had spread...Thanks be to God...it was truly on my pancreas...so Dr. Koep got those results and gives me yet another call..."Here's the deal kiddo...I need you to give me 2 weeks inpatient...it's right before Christmas and we don't know the outcome or your prognosis...so do you want to spend it with your girls at home...or have surgery right away?"...the answer was obvious-I wanted to spend every bit of time with my girls before I would go in for a surgery that was going to change my life forever.


 Pancreaticduodenectomy (say that 10 x) or Whipple Procedure...don't realize how serious it is till you see it on a diagram like this.

I remember waking up in ICU and the nurse informing me that when I felt ready to I could walk...but only when the time was right-I looked at her like she was crazy and said come on...lets go now! I was 2 hours post-op and walking around the nurses station...I was still so loopy from the surgery meds...but so remember hearing all the other nurses and staff cheering me on.  That was the kind of fighting spirit I had...from day one. No one or nothing was going to change me...I was going to fight! They would tell me to walk so many laps a day...I would do that in a certain about a time and triple their expectations...on most days.

My experience at Good-Sam was no different from my experience at T-Bird...I still think about all my wonderful nurses and wonder if Nate-the-Great became a daddy again...or if Marvin Martian still is wearing that good-smelling cologne, or if "Halle-Berry" is still on Nate-the Greats shift...I love them all...they cared for me on I can honestly say the worst days of my life to date. 





NG TUBE in one nostril and a Feeding tube in the other-not my kind of party to bring in the New Year...but I survived the Whipple...You never know how much your abdominal muscles do...until you've gone through such a surgery-again...ouch!  Being in there for 10 days was torture and my girls' were not allowed to visit me in my room-so I would gain the little strength that I had and pull my self up out of bed and walk down the hall a few steps to anxiously await to see my babies. I don't know if it was harder on them or me...but I do know my pillow caught a LOT of tears from me each night.
So on the 10th day...Dr. Brink came in to see me and he so kindly took out my NG tube...I like to compare it to the really fat-kindergarten size pencils...that was shoved into my nose and down into my stomach to remove any gastric content.-ummm yea that removal hurt just a tad.-ha! But boy oh boy yay...another tube gone.



This was me sitting on my hospital bed...Just waiting to be sent home with the nasty feeding tube in my nose...with the 2 drain tubes also in my abdomen.  So I go home...and ugh Miserable...that feeding tube was irritating my throat so bad...it had to come out.  So I waited a day and called into Dr.Koep's office...he not only "gently"-ha removes my feeding tube he yanks out my drain tubes...ok one-two-three...wowza! Ay-yi-yi my eyes began to tear up, my stomach became nauseous, and I saw stars...Dr. Koep sits me up gently ok...you are good to go. I don't know who was in more shock the med student with Dr. Koep or myself.  Ha ha I thought let me take a minute to gather my thoughts because at that point I was pretty sure he has just removed more of my intestines. :) 

Next on the agenda...see Dr.Ondreyco for her treatment plan.  I knew I would need chemotherapy and possibly radiation...I met Dr. Taw actually at Dr.O's office and within a matter of weeks...I was hooked up to 5FU chemo in conjunction with the radiation. Once I finished that...I was then started on Gemzar...another type of chemo. I did Gemzar for 10 rounds...



(This picture was taken almost 2 months ago)

I have met so many people along this journey of mine...I have lost some too...I am so grateful for God giving me the amour that I have needed and will continue to use in this battle.  I may be down 67 pounds from when I first began this fight...but I feel that I am stronger than ever at times. Yes there are more days than none lately that I am emotional relieving the past year...but I am thankful to be able to write this blog and express my love and gratitude to all of you that have been with me throughout my journey.  I am not going anywhere...I still have so much more to accomplish in my life...I have a few projects already in the works...and I look forward to sharing more details with you all as the time comes nearer...

This battle has been a tough one...but I have done it so far and I thank you for your continued love, support, and prayers.  From scans, to hospital stays, to surgeries, chemotherapy sessions, radiation, to tumor markers out of whack, to good days and to bad days...thank you!
Continue to uplift me in prayers...as I will go in about 4 weeks for more labs...this fight is never over...just a little easier knowing my latest PET/CT results. :)



A SPECIAL THANK YOU TO...my GIRLS, my family, my friends, Mesa/Boswell School of Nursing, Banner Thunderbird, Banner Estrella, Banner Good Sam, Dr. O, Dr. Taw, their staff...and to all the numerous strangers that have supported me.  I appreciate you all.  I have a story to tell...I have now battled "C" twice...and one day you will be able to "Hear Me Roar".  Praying for a continued life of NO more "C"...as my doctors have mentioned...I am a miracle. Yes...I would have to agree. I have kept fighting and will continue to.
Thank you dear Lord for giving me yet another day to live. God is good! Until next time...think positive!