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SHELLEY IN AR


My Story of my Dads PC diagnosis...

My dad just turned 65 in April 2012 and retired from his job as an electrician for 30 years at the local State University on June 31, 2012.

July 30, 2012 Adanocarsanomia Stage II diagnose confirmed , 2.4cm mass to head of pancreas with neck and body involved and compression of the SMV and portal vein.

My mom is alive and very involved in this story as well, She turned 65 in May of 2012 and retired from her job as well. she is a great caretaker however she is much less knowledgeable about the medical world and not very assertive when it come to doctors. She would have accepted what she was told and had no idea there were options.

My parents have been married 46 years this past January.

I am 44 years old and the only daughter, basically the only child (but thats another story). I am a single parent of an amazing 21 year old son. My son and I have lived in a home right next door to my parents for 17 years. I guess you could say I never grew up and moved out on my own. I lived at home and at 22 gave birth to my son and continued to live with my parents until he was 4 when I was able to build a house next door to them on their land. Technically we have two houses but we are a family unit, my mom, dad, me, my son.

January 2010---My dad has never been sick in his life until January 2010 when he developed a sudden onset of diabetes type II at the age of 63. he started seeing a PCP in a large group of PCP doctors which all work for our local hospital in a round about way. my parents long time PCP just retired and this new doctor come into the practice and took over his patients. did not really matter to my dad because he was never sick anyway..

July 2011--- Dad hurt his back at work and was having a lot of trouble lifting his right leg and pain. No pain meds because he just does not take them.

August 2, 2011--- My birthday, Dad has back surgery to repair rupture disc in back. Doctor says stay off 6 weeks. Dad is bored out of his mind and goes back on light duty 3 weeks later.

February 2012-- Blood sugar has become hard to control with Metformin and diet even though dad has lost 25lb over the past 2 years with diet for diabetes.

April 17, 2012-- I went with my dad to see the PCP because his diabetes had become uncontrolled with his metformin. I went not because my dad was not able to take care of seeing the doctor on his own but he is just not good at actually telling how much trouble he is actually having. He always acts like its really not a big deal and I wanted to doctor to understand. The PCP never even really looked at my dad, he spent more time explaining to me what diabetes is on an elementary level, as if I were stupid. Mind you I have an advanced graduate degree from college. He did not examine my dad at all. he just said lets increase your metformin and see if that helps and I will see you in 3 months handed him a script and out the door.

June 17, 2012---in June my dad started having some pain in his right side and through to his back after meals and his urine was dark and stools got light yellow color and my mom called and made him an appt with the PCP doc at his resistance saying things would get better.

June 26, 2012--- PCP thinks dad has gallstones with symptoms of right upper quad pain after meals and notes he is jaundice and sent him for a CT scan, telling him that most likely he would have surgery that night to take out gallbladder. CT came back normal on every organ except for enlarged spleen. Blood work showed elevated liver enzymes.

June 27, 2012--- attempted a different test on gallbladder function which was unsuccessful

June 29, 2012-- local GI doc appt with more labs and scheduled an EGD/Colonoscopy. all the time my dad is getting sicker.

July 2, 2012-- EGD and Colonoscopy are done and GI doctor reports Both are normal

July 4, 2012-- CA 19-9 comes back at 700, dad continues to get sicker, no apatite, feeling full, pain after meals. GI Doc scheduled ERCP

July 6, 2012 -- ERCP, tells us nothing but there is an obstruction of the bile duct, could not find tumor, could not stent the bile duct. took brushing of pancreas head. then he says I think he has cancer of his pancreas, he states 'if it looks like a duck and quacks like a duck, its probably a duck' then sends dad to radiology to have a tube inserted through the right side through the liver and past the bile duct to drain the bile from the liver due to his failed attempt to put in the stent. this was done with no anesthesia and my dad was in so much pain and so sick.

July 10, 2012-- have to use a wheel chair to get dad in the PCP office for appt because he is so sick and weak. THE PCP LOOKS AT US AND STATES 'well the brushings show no cancer evidence.... BUT it sure seems like that is the case, THE TUMOR MUST BE SMALL BECAUSE IT WAS NOT PICKED UP ON THE CT SCAN AT ALL.'

PCP continues with 'PC IS VERY AGGRESSIVE AND NO ONE SURVIVES, I ESTIMATE YOU HAVE ABOUT 6 MONTHS SO I SUGGEST YOU GET YOUR AFFAIRS IN ORDER. THE GOOD THING IS YOU WONT HAVE TO SUFFER LONG BECAUSE IT TAKES YOU REALLY QUICK. I WOULD NOT SUGGEST ANY TREATMENT BECAUSE THE CHEMO WILL ONLY MAKE YOU SICK AND WILL NOT CHANGE THE OUTCOME. WE MIGHT WANT TO START YOU ON HOSPICE'

My dad looked at him and asked 'SO YOUR TELLING ME I AM TERMINAL AND THERE IS NO HOPE FOR TREATING THIS??' PCP DOCTOR SAYS IN A VERY HATEFUL TONE, 'THAT'S WHAT I AM TELLING YOU.' PCP adds 'LOOK AT STEVE JOBS, HE HAS TONS OF MONEY AND HE COULD NOT BE SAVED'

I collect my parents and look the PCP in the eye and tell him we will find a doctor that will help us treat whatever this might be and I tell him I want a referral to MDA.

July 13, 2012-- GI doctor number 3 in the same office as GI doc #1 and GI Doc #2 decides he wants to do an endoscopic ultrasound and attempt to biopsy. I am waiting to hear from PCP doc on referral to MDA. GI doc 3 says he thinks he sees a tumor at the pancreas head that is about 2.5 cm and he did biopsy certain we would have some answers and for us to call the office in 3-4 days for results. So we wait,

July 18, 2012 --- again biopsy shows no cancer. at this point my dad has lost 25lbs due to not being able to eat from being sick and being put to sleep so many times in the two weeks.

I call MDA and ask if they have received the referral for my dad from his PCP (now been 8 days since I asked for this to be done) and how soon can we be seen. MDA searches and tell me they have not received any referral on my dad. thank goodness they tell me it is not required and take his information and ask me to gather the medical records and fax to them.

July 23, 2012-- we are at MDA seeing doctors and having test. Our first visit with the surgeon at MDA he is not even sure but what it might just be pancreatitis due to all the trauma over the past 3 weeks. However, CT at MDA does indeed show the tumor at 2.4cm and the endo ultrasound biopsy comes back as adenocarcinoma, also diagnosed with pancreatitis due to all the trauma to his pancreas over the past 3 weeks from procedures.

Inoperable at this time but shows no spread to local lymph nodes and appears to be contained to the pancreas (stage II per oncologist at MDA)... MDA oncologist says we can come home and do chemo and see her in 8 weeks to see if the tumor responds. They give us hope that if it does decrease in size and back off the SMV and Portal Vein he might be able to have surgery.

August 2, 2012--- My Birthday again,--- However before we can leave MDA and come home for chemo first we have to drain the abscess on the liver at the site where the biliary cath was inserted (at our local hospital) and get the infection cleared. When the culture comes back on the abscess it is determined STAPH.

August 4, 2012 --- we return to Jonesboro, AR on flagl and leviquin

August 15, 2012 -- see local oncologist, he agrees to give chemo ordered by oncologist at MDA, Abraxine 125mg, Gemzar 600mg every other week. I wonder if this treatment is aggressive enough...

August 22, 2012 -- first chemo treatment, first two days he does fine, day 3 body aches, fatigue which is not really new, fever 101, day 4-7 rash and itching

September 5, 2012 -- will be chemo session 2




Posted 09/01/2012 09:38 pm by Shelley in Ar
E-mail Address: sailor.shelley@yahoo.com

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